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DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR 1999
Wednesday, January 28, 1998.
TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND ORGANIZATIONS
WITNESS
JEROME PAULSON, M.D., AMERICAN ACADEMY OF PEDIATRICS
Mr. PORTER. This hearing begins the subcommittee's work on fiscal year 1999 funding for the departments and agencies within our jurisdiction.
Today we begin by hearing from public witnesses. We will then proceed to each of the departments and agencies, and then finally to Members of Congress. We will also receive testimony from the General Accounting Office. We have 29 days of hearings scheduled, covering just over 3 months, and we expect to have our final hearing right at the end of April.
Congress, as all of you know, is a busy place, and Members have many conflicting hearings, meetings, and other official responsibilities. However, let me assure you that while Members may not be present, your testimony is reviewed by them and their staffs and your views provide valuable information as we review the President's budget requests.
In order to accommodate as many members of the public as possible, we have scheduled over 20 witnesses for each session and are still not able to hear from all who wanted to testify. Overall, we will hear from over 200 witnesses in this segment alone. As a result, I have to enforce the rule limiting testimony to 5 minutes very strictly. My staff has acquired a new countdown device that they are going to use, and I would ask that, as you testify, you keep this limitation in mind in consideration of other witnesses that must follow you.
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I would also remind witnesses of two provisions of rules of the House. In addition to their written statement, nongovernmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they or the entity they represent have received.
If you have any questions concerning the applicability of this provision or questions as to how to comply, please contact this subcommittee staff.
We begin with Jerome Paulson, M.D., Associate Professor, Division of Pediatrics, Department of Health Care Sciences, George Washington University School of Medicine and Health Sciences, representing the American Academy of Pediatrics.
Dr. Paulson, we welcome you this morning.
Dr. PAULSON. Good morning, Mr. Porter. I am Jerome Paulson, M.D., a member of the American Academy of Pediatrics. I am a practicing pediatrician and an associate professor at George Washington University. On behalf of the Academy and our pediatric colleagues, I would like to thank the subcommittee for the opportunity to present this statement, and I want to thank you for putting children first on your agenda this morning.
This year, as we celebrate the bicentennial of the U.S. Public Health Service, we applaud how much has been accomplished. We have conquered many diseases and disabling conditions, especially for children; for example, smallpox, and we are close to the eradication of polio.
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To continue meeting the challenges ahead of new and emerging infectious diseases, food safety concerns, and costly chronic diseases, we must continue to invest in a continuum of public health activities that includes the full spectrum of biomedical, behavioral, and health services research, invests in disease prevention and health promotion, targets health care services for vulnerable populations, and educates a primary care and public health work force.
As pediatricians, we are on the front line and we see firsthand the impact of poverty and violence on the health of our children and adolescents, and we know that the future of our work force depends on the decisions we make today.
I will focus my oral remarks on a few observations from my own practice and research. The pediatric community has strived for decades to curb children and adolescents' access to and use of tobacco. Each day 3,000 children nationally begin to use tobacco. Of those people who will ever smoke, 90 percent begin before age 19. Young smokers suffer from respiratory problems and asthma, and among teens who are regular smokers, 1 in 3 will die from smoking.
As pediatricians, we counsel our patients about the addictiveness of nicotine and its detrimental health effects. In addition, we discuss with parents the impact of secondhand smoke on their children. These facts alone confirm that tobacco is truly a pediatric disease. As pediatricians, we strongly recommend adequate support for a wide array of tobacco prevention and cessation programs, including the CDC's office on smoking and health. These programs have a proven record of success in reducing smoking rates.
Let us not forget the environmental effects of tobacco smoke. Asthma is the most common chronic disease of childhood and is frequently exacerbated by tobacco. It is a disease that is on the increase, and disproportionately affects African-American and Latino children.
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According to the CDC, asthma-related costs to the health care system are continuing to grow because of increased morbidity and mortality. The current CDC projections for the year 2000 are $12.4 billion. Added to these health care costs are days lost from school for children and days away from work for their parents. However, with increased public health education, cost-effective environmental interventions and research, such as the NIH-, NIEHS- and NIAI-sponsored inner-city asthma study, asthma-related illnesses and costs can be dramatically reduced.
Injury is the leading cause of death and disability among children and young adults 1 to 44 years of age. Every day 60 children die from injuries and countless others are injured and disabled. Injury is costly on multiple levels: in the emotional toll it takes on victims and their families; in direct medical expenses, both acute and chronic; and in long-term economic costs due to the years of potential life and productivity lost, especially with respect to children.
In direct medical costs alone, injury costs the Federal Government $12.6 billion annually, and an additional $18.4 billion each year in disability and death benefits. Therefore, measures to prevent injury and reduce its severity are extremely cost-effective. The National Center for Injury Prevention and Control fulfills a unique function in this undertaking.
The Center's work addresses many types of injuries, both intentional, such as youth-perpetrated violence, and unintentional. Additional resources would enable the Center to continue its important leadership in the Safe America Program through which the NCIPC has brought together diverse public and private sector entities to develop and disseminate injury-prevention information and interventions.
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The initial focus of the effort is to reduce injury among children and adolescents. Additional resources would also enable the center to expand efforts to reduce physical and sexual violence among children, produce a comprehensive youth violence prevention program, and ensure that every U.S. resident has access to the lifesaving and cost-effective services of a poison control center through national and State-specific toll-free numbers.
As scientists and investigators, pediatricians encourage research decisions to continue to remain in the hands of scientists at the CDC. But what happens to children or adolescents when he or she is injured and requires emergency services? As a participant in a project funded by the EMSC program, I know how important those dollars are in enabling us to develop the information that will improve the system of care for children and save lives.
Thank you for this opportunity to provide you with our recommendations for the coming fiscal year. We hope that we can continue our dialogue with this committee following the release of the President's fiscal year 1999 budget. There are many important opportunities for pediatric behavioral and health sciences research. We know that you will not forget America's children.
Mr. PORTER. Thank you. Thank you for your fine statement, and thank you for being reasonably close to your time limit.
Mr. PAULSON. You are welcome, sir.
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[The prepared statement of Jerome Paulson, M.D., follows:]
"The Official Committee record contains additional material here."
Wednesday, January 28, 1998.
WITNESS
MIKE MILLER, M.D., FDA–NIH COUNCIL
Mr. PORTER. Mike Miller, M.D., Director of Federal Relations, Incorporated, testifying on behalf of the FDA Research Council.
Dr. MILLER. Thank you, Mr. Chairman.
On behalf of the FDA Research Council, I want to thank you for the opportunity to submit testimony concerning the importance of a sustainable, predictable funding base for the NIH. Our comments in full will be included for the record.
We emphasize the importance of the NIH in improving the quality of health care for all. In past years this committee has been vitally important in addressing the funding needs of the NIH and the Council, and the entire research community is grateful for your support.
Based on the Council's assessment of challenges and opportunities the FDA is presented within the next several years, the Council supports doubling the NIH budget for the next 5 years, starting with a 15 percent increase for fiscal year 1999.
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Why does the Council and NIAMS support such an increase for the NIH's budget? The answer to this lies, I believe, in understanding the goal of the entire process. It may seem obvious, but the goal of the entire biomedical research innovation and discovery process is to improve the quality of people's lives. In our detailed budgetary discussions that we had in Washington it is easy to forget that basic fact, but it is also sometimes not easy to see that the ultimate goal is a simple cure for a disease.
What everybody really wants is to be able to go to the physician, take a pill, and be cured for whatever ails them. Getting to that goal is not easy or simple. It takes a robust biomedical research system. Worldwide the U.S. is the leader in such a system, and the NIH is at its foundation.
What I would like to briefly discuss is the historical context of our current biomedical research system, because by understanding how we came to our current level of knowledge and the treatments from that knowledge, we can better appreciate the landscape ahead and better plan how we want to proceed in the future.
Most people who support the NIH understand intuitively what potentially lies ahead, but by understanding what seems intuitive, it can help to clarify its importance and relevance to our lives, our actions, and our future.
What has been the progress of medicine for the past 20, 50, or 100 years? For example, 100 years ago, biomedical research was largely a process of observation and classification. Medical practice was largely based upon simple chemicals and even herbal extracts which have been found by trial and error over many years to have some beneficial effects.
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In fact, in 1910, the AMA surveyed physicians and asked them what they thought were the most important therapies available to them. Number one on the list was ether, which enabled anesthetized surgery. Number two was morphine, a painkiller but certainly not curative. Number three was digitalis for heart ailments. Number nine was alcohol. Number 10 was mercury.
The AMA did a similar survey in 1945 and found significant advances. Number one was penicillin and the sulfa antibiotics, ether had dropped to number four, and digitalis to number five. Insulin had been discovered and was added to the list as number eight, and number ten was vitamins.
The question is: What would such a list look like if physicians were surveyed today. Insulin might still be on the list because it is very important for people with diabetes, but its form of purity has changed. Today human insulin is available through the common DNA technology. Other innovative medicines treat a variety of ailments which were not even understood in 1945, such as cancers, autoimmune disorders, AIDS, and neurological conditions. The list goes on.
One only needs to talk to friends or their children to find out what kind of medicines are being taken that are available today that were not available 5 or even 10 years ago. What has changed in the past 20 to 50 years? Some outstanding biomedical breakthroughs have taken place to lead to these new medicines. Heart disease, for example, is based on—new treatments for heart disease are based on a better understanding of specific receptors or enzymes, how they block or activate those enzymes or receptors. Each of these advanced treatments is only possible once it is understood how the receptor enzyme controls some aspect of health or disease. This is the essential basic research which NIH supports. Without this knowledge, new medicine would only be found through serendipity, not through rational science.
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I may have given the impression with my oversimplified account simply that innovation proceeds in a linear, stepwise fashion. It is actually sinuous and weblike, with many blind paths and interlinking discoveries. With NIH in the lead identifying promising paths, the other partners in the process will be able to support the intellectual discoveries made possible by NIH funding, and to work with NIH and academic researchers to take these discoveries out of the test tube and into a form where they can provide significant benefits to millions of Americans.
To accomplish this, support for the NIH must be across its range of programs, including those which provide means so everyone in the community can take advantage of scientific opportunities. One other exciting avenue which is just beginning to be explored involves the race to develop and validate diagnostic measures and tests to diagnose or to determine the status of primary diseases before the symptoms will develop. Such steps will attempt to prevent disease progression in individuals and help researchers to determine whether an experimental treatment is or is not effective, and thus either make it more widely available, or attempt the investigation in order to pursue other opportunities or paths.
These are some of the exciting opportunities and challenges, Mr. Chairman. The Council appreciates your support for the NIH, and urges you to consider our request for doubling over 5 years and a 15 percent increase. We realize you have a tough job and many priorities, but thank you for this opportunity. We are willing to take any questions.
[The prepared statement of Mike Miller, M.D., follows:]
"The Official Committee record contains additional material here."
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Mr. PORTER. Dr. Miller, thank you, sir, for your excellent statement. Let me say that the American people do intuitively understand the importance of biomedical research, but all of us, all of you, have to somehow get the message out as to what progress has been made, why it is important to human beings. It is not only important to improve lives, it saves health care costs tremendously. It improves the quality of life in many different ways.
Somehow we need to get that message out to every American person, not just the Members of Congress but the whole population at large. All of us have to put our shoulder to that wheel if we are going to get the kinds of increases that we think are necessary for NIH.
I would say one other thing. We can only work with what we are given to work with. It is the budget process that allocates the funds. If we sit and wait until the subcommittee marks up its bill and says, oh, fine, you know, and we don't do anything up to that point, we could well have lost the opportunity to make the kinds of commitments to biomedical research that we need to make.
So the fight is right now with the budget process, and getting the kinds of allocations that allow us to make the kinds of increases that both of us and everyone in this room, I suspect, believe are our goal, and what we think will really help advance the cause of biomedical science and improve the lives of every person on the planet. Thank you, Dr. Miller.
Dr. MILLER. Thank you. I couldn't agree with both your points any more strongly. Thank you.
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Wednesday, January 28, 1998.
WITNESS
JOHN M. CRAWFORD, D.D.S., Ph.D., AMERICAN ASSOCIATION FOR DENTAL RESEARCH
Mr. PORTER. John M. Crawford, D.D.S., Ph.D., Professor of Periodontics, the University of Illinois at Chicago, College of Dentistry, representing the American Association for Dental Research.
The Chair welcomes a fellow Chicagoan.
Dr. CRAWFORD. Thank you very much. Thank you for this opportunity to address the committee.
As you indicated, I am here to represent the American Association for Dental Research and its 5,300 members. I would like to discuss the 1999 budget allocation to the National Institute for Dental Research and the Agency for Health Care Policy and Research.
When you deal with the justification of allocations, you have to look back and you have to look forward. You look back to document the successful and the productive and wise use of funds, and the consequent increase in the health of the American people. I think that the NIDR has very good evidence that it has done this in a very successful way. This evidence we will present in our written testimony, and the Director of NIDR will present more evidence for this in his oral testimony.
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However, you have to look forward, and you have to present evidence that there are problems yet to be solved. These problems can be solved with the manpower and technology available. It is this point I would like to discuss briefly today.
I would like to present a scenario for oral health management in the 21st century. I think this will focus on identification of people at risk for oral disease, and there is a lot of evidence that this is not distributed evenly through the population of the U.S. There are people at risk and people relatively immune.
We have already saliva-based tests to predict dental decay activity, and there is interesting recent work which begins to show us that we can predict the activity of gum disease as well. Having identified people at risk, we will then be able to offer them lifetime immunity from these diseases, and again, the National Institute for Dental Research has supported research which clearly shows the ability to produce a safe and effective vaccine for dental caries, and there is interesting work in the animal models for certain diseases, with mice and monkeys, that shows we may be able to offer a safe and effective vaccine for gum disease as well. So there is a scenario for cost-effective health research focusing on at-risk populations.
I would like to take a moment to describe the situation in 1997, using myself as an example. My dentist tells me to clean my teeth 2 minutes with a toothbrush at night, and added to that, 2 minutes with dental floss. That adds up to about 36 1/2 hours every year, and if I live to the age of 76, my actuarial limit, I will have spent 6 months cleaning my teeth. Life is too short.
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I would like to also indicate that if you are susceptible to gum disease, you have a lifetime of struggle combatting this disease, slowing it down, and trying to arrest it. This is a chronic, disabling disease. The treatment is very sophisticated, but it is also time-consuming, very costly, and leads to lost productivity hours.
I would like to point out that teeth are the only organs that we frequently discard before the end of our lives. And I would like to point out that periodontal disease is a major health problem in this country. Recent NIDR-sponsored research has shown that 35.7 million Americans have at least mild bone loss. But more surprisingly and more seriously, 13.1 million Americans have moderate to severe bone loss. So this is a public health problem of pandemic proportions.
I would like to envisage in the near future a longer, healthier life, but at the end of that life, we will have our healthy teeth in our mouths.
Mr. Chairman, the American Association for Dental Research supports the ad hoc group's overall recommendation for NIH of $15,695,000,000. More specifically, the American Association for Dental Research supports the request for $240,822,000 for the National Institute for Dental Research.
I would also like to take this opportunity to support the work of the Agency for Health Policy and Research, because we strongly feel that research into health care policy is essential for the oral health of the American people.
I would be happy to attempt to answer any questions that you may have.
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[The prepared statement of John Crawford follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Crawford, did you say 15.95 billion?
Dr. CRAWFORD. The figure that I quoted was $15,695,000,000.
Mr. PORTER. What does that represent?
Dr. CRAWFORD. That represents a 15 percent increase, I believe.
Mr. PORTER. Whose figure is that?
Dr. CRAWFORD. The ad hoc group's overall recommendation for NIH.
Mr. PORTER. I have already given my sermonette about how we get there, but let's all work together to achieve that.
Dr. CRAWFORD. Yes, indeed.
Mr. PORTER. Thank you very much for your good testimony.
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Wednesday, January 28, 1998.
WITNESS
DAVID RECKER, M.D., AMERICAN COLLEGE OF RHEUMATOLOGY
Mr. PORTER. David Recker, M.D., Member, ACR Government Affairs Committee, representing the American College of Rheumatology.
Dr. RECKER. Good morning, Mr. Porter. I am David Recker, M.D. I am a rheumatologist from Auburn, Pennsylvania, and I am here today to testify for the American College of Rheumatology in support of funding for the National Institutes of Arthritis and Musculoskeletal and Skin Diseases and for the NIH as a whole.
The ACR is a professional organization of rheumatologists. It includes practicing physicians, research scientists, nurses, physical and occupational therapists, and other allied health professionals. We are dedicated to understanding, treating, and hopefully one day curing the more than 100 types of arthritis and related disorders that involve joints, skin, bones, and connective tissue.
These conditions often result in severe disability and sometimes even in death. In just a few years we face the coming of a new millennium. Amid the hoopla and celebration of this event, there is a certain amount of uncertainty and speculation; but future events await us, our children, our children's children. What challenges does our Nation face in defining its existence? Will John Elway, one of the last baby-boomers, continue to be able to play into the 21st century?
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What we do know is that in the year 2000, some 20 million American baby-boomers will turn age 50. We also know that this Nation's aging population will be stricken with an ever-growing burden of arthritis unless something is done to halt the progression of these debilitating conditions. A study from the Journal of the American Medical Association revealed that nearly half of all Americans age 60 and above suffer from some form of arthritis.
Studies have shown that no condition impairs the overall quality of life in more older Americans and to a greater extent than does arthritis. Swollen and disfigured joints not only hurt, they significantly hinder effective individuals in their ability to perform even the most basic of daily functions such as bathing, dressing, and eating. I can tell you from my personal clinical experience how vibrant, happy, productive individuals have become dependent, pain-ridden, despondent, and even depressed as these afflictions rob them of their functional capacity and steal from society their irreplaceable productivity.
As I have already mentioned, our ever-aging population means more and more individuals will face the potential ravages of arthritis. Providing care for this growing number of Americans means that the government, private insurers, and indeed society as a whole will bear an ever-increasing economic burden.
While arthritis typically is encountered in older populations, in reality no age is spared from this group of diseases. Disorders such as juvenile rheumatoid arthritis, which can strike children at virtually any age, can lead to lifelong disability, disfigurement and pain. Younger adults are also subject to the pain and suffering imparted by rheumatic diseases. Systemic lupus erythematosus, for example, is typically a disease of young, otherwise healthy women.
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Through increased research into the basic pathology and origin of these diseases, as well as through increased investigation into better treatment and management strategies, we can potentially greatly mitigate the costs of these diseases in both personal and economic terms, and we can improve the overall quality of life of afflicted individuals.
I am here on behalf of the ACR to voice support for the appropriations for the NIH as a whole, and more specifically, the ACR joins with the other 200 other organizations who together form the Ad Hoc Group for Medical Research Funding to support a 15 percent NIH-wide increase in biomedical research and training, as indeed a first step to doubling the NIH budget in the next 5 years.
The ACR, along with other members of the Coalition of Professional and Voluntary Groups Concerned with the Programs of NIAMS, endorsed this increase, translated to this specific Institute's budget. This would result in funding NIAMS at approximately $316 million, $40 million more than the current fiscal year.
What can we do with this increased funding? Funded in part by NIAMS, researchers have recently discovered mutations in certain genes which may lead to an overgrowth of synovial tissue. The linings of joints in patients with arthritis have severely thickened synovia, and it is this thick synovia that is felt to be responsible for much of the disease's devastating problems. By further investigating how to control and limit the growth of synovia, we can potentially mitigate some of the ravaging effects of rheumatoid arthritis.
On a more practical matter, again, researchers funded by NIAMS have assessed the medical and economic impact of joint replacement, currently an option for Americans enduring the pain of arthritis. Joint replacement is nevertheless expensive. It costs about $48,000 for a typical hip replacement. The cost for nonsurgical intervention, however, has been shown by these researchers to be $165,000, three times more expensive. This analysis does not even consider the impact of the quality of life.
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The cooperative efforts as well, of NIAMS-funded researchers, can investigate questions that will further the mission of the Institute. Through collaboration with the Aging Institute, with the National Institute of Child Health and Human Development, and with NEI and NIRD, we can again further the mission statement.
The ACR certainly commends the leadership demonstrated by this committee, and you particularly, Mr. Porter, in support of the Nation's biomedical research effort. We strongly urge this subcommittee to continue its effort and to support the 15 percent funding in programs of the National Institutes of Health.
Thank you.
[The prepared statement of David Recker, M.D. follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Recker, thank you very much.
I have to say, sometimes, often, there is a great deal of frustration for the chair, because there are lots of questions I would like to ask you about what genetic basis for the disease, if any, has been discovered, environmental factors, mental factors, and the like. But I don't have time to ask those kinds of questions and receive your answers at this point. It is true of almost all of our witnesses, and the difficulty is, we are limited by the time we have, so we have to do the best we can.
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But thank you very much for your testimony today. I very much appreciate it. Obviously, we are going to do our very best to meet the goals that you have described for NIH and for NIAMS.
Dr. RECKER. We will be happy to answer any questions.
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Wednesday, January 28, 1998.
WITNESS
ROBERT O. KELLEY, Ph.D., ASSOCIATION OF AMERICAN MEDICAL COLLEGES
Mr. PORTER. Robert O. Kelley, Ph.D., associate vice chancellor for research and executive associate dean of the Graduate College, University of Illinois College of Medicine, representing the Association of American Medical Colleges.
Dr. Kelley.
Dr. KELLEY. Thank you, Mr. Porter.
My name is Robert Kelley. The University of Illinois, especially the University of Illinois at Chicago, and the Association of American Medical Colleges thanks the subcommittee for their continued support of the National Institutes of Health and the other programs I will discuss.
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In particular, Mr. Chairman, we want to thank you for your leadership on behalf of medical and biomedical research. I will summarize my written statement with the following points.
The Federal investment in medical research, through the NIH, continues to yield a profusion of fundamental and applied knowledge transforming the practice of medicine. In addition to its enormous benefit to the health of the American people, NIH-sponsored research also continues to provide the basis for much of the sustained success of the biotechnology and pharmaceutical industries.
Still, America faces serious health problems, and new threats constantly appear. Congressional support for medical research has produced a wealth of scientific opportunities to answer these challenges. If we are to sustain this momentum and translate the promise of science into improved health for all Americans, we must redouble our national commitment to medical research.
The Association of American Medical Colleges endorses the recommendation of the Ad Hoc Group for Medical Research Funding for a 15 percent increase in the NIH budget as the first step toward the goal of doubling NIH funding over the next 5 years. Science is changing at a breathtaking pace, and we must invest in new technologies, new personnel, and new research infrastructure if we are to take full advantage of this science.
The Association of American Medical Colleges urges the subcommittee to pay particular attention to the needs of the National Center for Research Resources, which provides support for the general clinical research centers and other essential elements of a vigorous research environment.
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The transformation of the health care system to a market-driven, price-competitive structure poses a significant threat to the ability of medical schools and teaching hospitals to maintain an environment for research and innovation. The Association of American Medical Colleges strongly urges the Congress to provide for flexible but accountable institutional support by funding the Biomedical Research Support Grant program, BRSG.
The geographic and specialty maldistributions of physicians in the United States are critical issues facing both the Congress and the Nation. The Association of American Medical Colleges urges the subcommittee to provide additional funding for the National Health Service Corps and the health professions education programs authorized under Titles VII and VIII of the Public Health Service Act, which play a major role in addressing these problems.
The Association of American Medical Colleges thanks the subcommittee for sustaining funding in fiscal year 1997 for the health professions and nursing education programs, and the AAMC joins the Health Professions and Nursing Education Coalition in urging the subcommittee to provide at least $306 million for fiscal year 1999.
The drive to cut health care costs raises concerns about the quality and appropriateness of care and the choices available to consumers. The Agency for Health Care Policy and Research is charged with sponsoring health services research designed to improve the quality of health care, decrease health care costs, and provide access to additional health care services in a rapidly changing marketplace. The Association of American Medical Colleges believes strongly in the value of health services research as this Nation continues to strive to provide high-quality health care for all of its citizens.
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The Association of American Medical Colleges endorses the Friends of the Agency for Health Care Policy and Research in their recommendation of a fiscal year 1999 funding level of $175 million for the AHCPR. As you know, it is the major Federal program supporting the widely-recognized need to strengthen our knowledge of and commitment to evidence-based medicine.
Finally, we wish to emphasize the importance of research, training, and health professions programs targeted at the racial and ethnic groups that are underrepresented in medicine and research. Support for these programs is more crucial than ever.
The Association of American Medical Colleges appreciates the continued support of your subcommittee and the support that has given to all the programs cited in my written statement. We take very seriously the charge you just gave to others and look forward to working with you on behalf of those charges.
[The prepared statement of Robert Kelley follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Kelley, thank you very much.
Now that my colleague, Congressman Stokes, is here, so that both sides of the aisle are represented, I can ask this question. Does the AAMC have a reaction to what the President said regarding research in his State of the Union Address last night?
Dr. KELLEY. We are certainly supportive of biomedical research and the goals it brings, to the benefit of the American people. I think when we represent all of the people and all of our cities, all of our States, I think everything we can do as a people to support the goals of biomedical research we would certainly stand behind.
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Mr. PORTER. What I understood from the President's remarks, and, Lou, you can correct me if I am wrong, but he said a 50 percent increase in all research, all basic research, over the next 5 years, not the 100 percent increase that our witnesses here have been talking about.
Dr. KELLEY. I think the AAMC would certainly stand behind doing as much as we could. We would certainly support the ad hoc group's recommendations and I think the position that you are representing, trying to do as much as we possibly can for NIH and biomedical research.
Mr. PORTER. Tell the President and the Committee on the Budget.
Dr. KELLEY. We certainly shall. Thank you.
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Wednesday, January 28, 1998.
WITNESS
ERIC NEILSON, M.D., AD HOC GROUP FOR MEDICAL RESEARCH FUNDING
Mr. PORTER. Eric Neilson, M.D., the C. Mahlon Kline professor of medicine and pediatrics at the University of Pennsylvania School of Medicine, and founding president of the Association of Subspecialty Professors, representing the Ad Hoc Group for Medical Research Funding.
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Dr. NEILSON. Good morning, Mr. Porter. Thank you.
I am testifying on behalf of the Ad Hoc Group for Medical Research Funding, as the first coalition of nearly 200 organizations representing patient groups, medical scientific societies, academic and research organizations, and industry.
Mr. Chairman, we thank you and the members of the subcommittee for making the National Institutes of Health one of your very highest priorities.
I would like to make the following points to summarize my written statement. As a consequence of the Federal commitment to medical research, an ever expanding base of scientific knowledge about health and diseases is being developed that is revolutionizing both the conduct of the scientific inquiry and the practice of medicine. If we are to sustain this momentum and reap the full benefits of this investment, then the Nation must commit to its plan for significant and sustained funding for the NIH.
We commend the leadership demonstrated by the congressional sponsors of proposals to double the NIH budget over the next 5 years. For fiscal year 1999, the Ad Hoc Group supports a 15 percent increase in NIH funding as the first step towards the goal of doubling the NIH budget over the next 5 years. We believe this increase is justified both by the health needs and research capacity of the Nation. Such a long-term commitment will also stabilize sensible planning through use of those funds.
Congressional support for the NIH over the past 40 years has produced a wealth of opportunities in basic and clinical science that will ultimately alleviate and eliminate many of the health challenges we currently face. In addition, medical research plays an important role in the growth of biotechnology and pharmaceutical industries.
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I personally have been supported throughout my career by the NIH. I am now a principal investigator of five NIH grants. I serve on the National Advisory Council for the National Institutes on Diabetes, Digestive and Kidney Diseases.
Permit me to make the following observations on the needs for additional funding that we are recommending. Science is changing at a revolutionary pace. It requires investment in new technologies and a renewed research infrastructure, including people with appropriate skills to meet this new science.
As someone who has trained numerous physician scientists over the last 25 years, I can say that one of the most pressing needs we face in the area of training, particularly for clinical research, is for physician scientists. We need to expand clinical research training opportunities. Additional funds could be used to raise the stipends and to lengthen the training period for clinician scientists to at least 3 years. We have a crisis in the Nation in attracting and retaining new investigators in these areas. Direct attention to this budget item would be most important.
Additional funds could also be used to enhance clinical research infrastructure, including increased support for general clinical research centers. A reinvigorated GCRC program could serve as a focal point for clinical training as well as expand clinical research activities. This would happily avoid a new administrative entity and focus initial efforts towards institutions with established records of clinical research excellence.
At the same time, of course, we must also sustain and enhance our basic research, including increased support for current researchers, as well as promoting opportunities for new investigators in those areas of biomedical science that have been underfunded.
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We particularly need to enhance the institutional research capacity, including renovation of outdated facilities, creating new approaches to support animal facilities, providing state-of-the-art instrumentation and other research equipment, promoting informational and computer technology, and substantially increasing the funding for research support programs under the National Center for Research Resources.
Finally, continued progress in medical research depends on the advancement in related fields of science, including chemistry, physics, mathematics, and engineering. We urge the administration and the Congress to consider the breadth of this Nation's research efforts as interdependent and fund them accordingly.
In closing, we recognize the difficulty of achieving the goal we have articulated under the Center spending caps. A national commitment to doubling the NIH budget over the next 5 years will necessitate additional resources to sustain the growth of the coming years. The Ad Hoc Group urges the Congress to explore carefully all options to identify new resources. We feel that leveraging other entities and other opportunities is very important to this process in bringing other individuals into the discussion.
We stand ready to work with the supporters of medical research on Capitol Hill to achieve this goal, beginning with fiscal year 1999 and beyond, and thank you very much for your time and attention. I am happy to answer any questions relating to my comments.
[The prepared statement of Eric Neilson, M.D., follows:]
"The Official Committee record contains additional material here."
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Mr. PORTER. Dr. Neilson and Dr. Kelley, I want to explain that I was encouraged by what the President had to say in his speech last night. He talked, Dr. Neilson, not only about biomedical research, but all basic research.
Dr. NEILSON. Yes.
Mr. PORTER. For the reasons you have stated, but also for the strategic political reason that I do not think we can set one type of research against another in our Federal budget, they have to go relatively hand in hand.
I think that the President's remarks were very encouraging, and all of you probably realize—at least this is the way I think about it—that when the President of the United States gives support for a figure for NIH that is an increase of about 8.2 or 3 percent, that becomes, to us, a floor from which we perhaps, if we get the resources, can work and even do better.
So I feel very encouraged by what the President had to say. I said that publicly, both to the electronic and print media, and I think it indicates a new commitment from the White House to put this at a very high priority.
Having said that, all of us have to realize that the President's budget has about $100 million of new revenues that very possibly could never materialize. There are many in the Congress who are very opposed to any kind of new revenues, even tobacco taxes, which I think are very justified, and whether we can get the revenue increases to support the spending increases is at this point, I think, very problematical.
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I was very encouraged by what the President had to say, and I have to say, Lou, I said that to everybody who asked and, in fact, some who didn't ask.
So thank you, Dr. Neilson, for your very good testimony. We appreciate it, and we are going to do our very best to work very closely with the Ad Hoc Committee and push very hard to put biomedical research at a high priority within all of the programs of the administration.
Thank you.
—————
Wednesday, January 28, 1998.
WITNESS
ROBERT R. RICH, M.D., THE AMERICAN ASSOCIATION OF IMMUNOLOGISTS
Mr. PORTER. Robert R. Rich, M.D., vice president and dean of research, Baylor College of Medicine, Houston, and chairman of the Committee on Public Affairs, representing the American Association of Immunologists.
Dr. Rich, welcome.
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Dr. RICH. Thank you very much, Mr. Chairman. It is a pleasure to have the opportunity to represent the 6,000 scientists of the American Association of Immunologists.
I would like to begin this morning by simply saying how much we are indebted to you and to this committee for the extraordinary support you have given to the biomedical research efforts over the past 3 years.
Indeed, at a time when you have been mandated to cut more than $50 billion from the allocations to this subcommittee, you have managed to provide important increases in the allocation to NIH in every year, and we are very, very grateful for that.
We are also very grateful to you and to Mr. Miller for your attention to an issue that we called to your attention several years ago relating to the regulatory burdens that we face as we try to make the research that we do with your appropriated dollars increasingly more efficient. We understand that this is going forward now, as you have called for a private sector study from NIH to look into this issue. We are anxious to work with that study in any way we can to be helpful.
Mr. PORTER. Dr. Rich, I want to say that Dan Miller has taken the lead on that and done, I think, a very, very fine job of putting that issue before us and pushing hard to get it resolved.
Dr. RICH. We are very grateful for that, and we very much appreciate that.
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What I would like to talk about today are two issues. The first is a problem and the second is an opportunity.
The problem we have already heard about from the AAMC. That is, with the increasing competitive managed care environment, we find that our academic medical centers really can no longer afford to support the research faculty which is so vital to the activities of NIH.
Interestingly, as they indicated to you, a solution already exists in the law; that is, the Biomedical Research Support Grant program, or BRSG. Indeed, in 1990, NIH said, this program recognizes the need to support new investigators, to explore new and unorthodox research ideas and techniques, to respond promptly to opportunities that develop in the course of active and diverse research programs, and to provide central shared resources.
For the 27 years of its funding, the BRSG program received a median of 2.4 percent of the research project grant budget that was given to the institutions. This year, that would equate to approximately $186 million. However, in 1992 funding for the BRSG program was discontinued over concerns regarding its accountability.
Mr. Chairman, I submit that that is a problem we can fix. Last year, I advocated that we reestablish the BRSG program with full peer review and accountability. The subcommittee agreed with this proposition, requesting that the NIH study the feasibility of reestablishing a revised Biomedical Research Support Grant program.
I come before you today requesting an appropriation for a new BRSG program on an experimental basis for a 3-year trial period. I would suggest an appropriation of $155 million in the first year, which would be about 2 percent of the research program grants budget.
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I would further suggest that such a program be established based on three fundamental principles: One, that the monies be used for currently defined purposes; second, that the funding be distributed according to a process of strict institutional peer review; and, third, that the NIH be charged to develop a mechanism for accountability. I provided details of each of these principles in my written testimony.
This brings me, then, in closing, to the opportunity. This year we celebrate the 20th anniversary of Edward Jenner's discovery of the principles of vaccination. Within the past 50 years, we have seen many of the historical scourges of mankind essentially disappear. Indeed, the target of Jenner's work, smallpox, has been eradicated from the Earth.
Yet, I need not remind the members of this subcommittee that we still face formidable threats. We all heard about the bird flu from Hong Kong in very recent weeks. And recognizing that the only way we are going to really confront the problem of HIV and defeat it is to develop an effective vaccine, the NIH last year established a vaccine research center on the campus in Bethesda. The AAI supports this initiative of vaccine development but would like to make some suggestions to you in terms of how it might be modified, because we believe that, first of all, the time is now to extend it beyond the NIH campus and to extend its focus beyond HIV.
Indeed, we recognize that there are many important scourges of an infectious nature that remain before us. Perhaps more excitingly, however, is the idea that the principles behind vaccination can now, with new scientific opportunities, be turned to diseases of a noninfectious nature. We are very excited, at AAI, about the possibility that the human immune system might be programmed to attack a variety of diseases before they develop.
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What kind of diseases am I thinking about? I am particularly attracted to the notion of autoimmunity and cancers. That is right, Mr. Chairman. As an immunologist, I can tell you that we can look to the day when we might be able to vaccinate our children against lupus, multiple sclerosis, diabetes, and rheumatoid arthritis, much as we vaccinate them against measles and polio today.
Thank you again very much for the subcommittee's support. We appreciate the opportunity to testify before you.
[The prepared statement of Robert Rich, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Rich, thank you very much.
I have one quick question. Is the BRSG program going to appear in the President's budget? In other words, is he suggesting that we provide this funding, do you know?
Dr. RICH. We have not seen that. I would be surprised if we see a line item appropriation. I think that—but we have not seen the details of the President's budget.
Mr. PORTER. Thank you very much. We appreciate your testimony.
—————
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Wednesday, January 28, 1998.
WITNESSES
CLAUDIA E. MILLER, Ph.D., M.T., AMERICAN SOCIETY OF CLINICAL PATHOLOGISTS
SARA BROWMAN, JOHN EDWARD PORTER SCHOLAR
Mr. PORTER. Dr. Claudia Miller, director of Medical Technology Programs and chair of Allied Health at National Lewis University in Evanston, Illinois—that is my hometown—accompanied by Sara Browman, the Porter Scholar.
Hi, Sara.
Welcome, Dr. Miller.
Dr. MILLER. Good morning, Chairman Porter, Mr. Stokes.
I represent the American Society of Clinical Pathologists. I have served on their Educators Committee, and I have been a regional representative and recruiter.
The American Society of Clinical Pathologists, the ASCP, is a medical not-for-profit society which has as its goal scientific and educational purposes. It has 75,000 members, and they include not only board-certified pathologists but other physicians, Ph.D. scientists, and board-certified technologists and technicians.
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The allied health professions serve 60 percent of the health care work force today, and we serve in all different tiers, from hospitals to health care, extended health care, skilled nursing, and even physicians' offices.
The Allied Health Grant program, which is under section 767, Title VII, of the Public Health Service Act, has been very effective in dealing with allied health needs, but more resources are needed simply because we need more allied health professionals to serve the United States population. Shortages are evident by vacancy rates, and I will give you some examples of those.
In laboratory medicine, we have in histotechnology an 11.7 percent shortage. These are the people who prepare tissues for examination. In cytotechnology supervisors, the people who look at cells to assess the status of cancer malignancies, there is a 14.1 percent.
Some people argue that it is not the responsibility of the Federal Government to aid allied health programs. We agree. The private sector does have to take responsibility. The ASCP does this by offering 50 scholarships annually to medical technology, medical laboratory technicians, histotechnology technicians, and also cytotechnology students.
I have here beside me Sara Browman, who is the 1998 recipient of the scholarship named in your honor, Mr. Porter, because of your support to allied health.
But there is a difference. The ASCP gives monies to students like Sara, but the Allied Health Project Grant program gives money to schools so that students like Sara will have the opportunity to receive an education and be able to work in allied health.
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We have very many success stories. One is at the University of Nebraska Medical Technology Program, where, with the third $358,000 they received in 1992, they were able to start a world health program. Fifty-three medical technology students graduated, and 94 percent remained in the rural area to serve people in clinical laboratory medicine. They are now self-sufficient, and many of their students from the regular on-campus program are actually seeking employment in rural areas.
The University of Maryland, using a grant that they received in 1991, has addressed the problem of minority recruitment and retention. I am very happy to tell you that in 1996 the Medical Technology Program had 52 percent minority students, and they have a 95 percent retention rate. This is at a majority institution, and the retention rate is one of the highest in the Nation.
The monies from Allied Health Project Grants actually are used to help establish critical need programs. Project outcomes are tracked; information is shared with other programs so that they are able to go out and start programs that are needed using limited resources.
Keeping in mind that these programs have been so successful and that we so desperately need more allied health professionals, we urge you to consider funding the Allied Health Projects Grant program for fiscal year 1999 for $10 million and the Health Professions Training program for $306 million.
Thank you for your consideration.
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[The prepared statement of Claudia Miller follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Thank you very much, Dr. Miller.
Sara, your hometown is what?
Ms. BROWMAN. Rockford, Illinois.
Mr. PORTER. Rockford, Illinois. My wife's mother lives in Rockford, Illinois, so I am there frequently. We welcome you. I am very honored that you are the Porter scholar.
There are a number of scholarships that you have named for a number of different individuals at National Lewis; is that correct?
Dr. MILLER. We have a lot of scholarships, yes, especially Mr. Lewis, who gave us all the money for our university.
Mr. PORTER. Especially Mr. Lewis. That makes good sense.
Well, Sara, we appreciate your joining Dr. Miller this morning, and we wish you well in your career. We are honored that there is a scholarship in my name and that you are the scholar. Thank you both for being here.
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Mr. Stokes.
Mr. STOKES. Mr. Chairman, I would just like to take a moment and thank Dr. Miller for sharing with us the success of her minority recruitment program. This is welcome news, particularly at a time when, because of the assault upon affirmative action, we are finding now that throughout the Nation there has been a considerable drop in even the applications by minority students because of the fear and the actual threat of not being accepted, and so forth.
The fact that you are having this type of success with it is very encouraging, and I think it speaks loud and clear to other institutions, particularly majority institutions, as you have cited, of the absolute need to do something more in this area. I really appreciate your sharing this with us.
Dr. MILLER. Thank you, Mr. Stokes.
I think that the success of the program at the University of Maryland is because of early intervention. They start in elementary school, track them through middle school, and then continue on until they receive their bachelor's degree.
Mr. STOKES. I may want to get a chance to talk with you a little further about your program and get some information. Maybe we can help some of the other institutions in this respect.
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Dr. MILLER. That would be wonderful. Thank you very much.
Mr. STOKES. Thank you.
Mr. PORTER. Thank you, Dr. Miller and Ms. Browman.
Wednesday, January 28, 1998.
WITNESS
JOHN F. NEYLAN, M.D., AMERICAN SOCIETY OF TRANSPLANT PHYSICIANS
Mr. PORTER. Dr. John F. Neylan, President-Elect of the American Society of Transplant Physicians, testifying on behalf of the Society.
Dr. NEYLAN. Mr. Chairman and members of the subcommittee, thank you for the opportunity to present testimony on behalf of the American Society of Transplant Physicians. I am John Neylan, Medical Director of Kidney Transplantation at Emory University and President-Elect of the American Society of Transplant Physicians.
The ASTP, which receives no government support, has over 1,100 physicians, surgeons, and scientists actively engaged in the research and practice of transplantation medicine and immunobiology, and represents the largest and broadest number of transplant professionals in the United States.
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Over the past 30 years, transplantation of solid organs has moved from experimental to accepted therapy, with over 20,000 performed in 1997 in the U.S. The success of this procedure has improved greatly, and now almost all solid organ transplant recipients have an 83 to 97 percent survival rate at 1 year. Much of this success can be attributed to the basic and clinical research that has been funded by previous NIH appropriations. Our better understanding of the body's response to foreign proteins has led to countless other breakthroughs in all areas of medical science.
However, we still have a long road ahead. During the next hour, four new names will join those 56,793 individuals in this country waiting for a solid organ transplant. By the time I get home to Atlanta this evening, 10 individuals will have died because the wait for a transplant was just too long. For those fortunate individuals who received this gift of life, the long term still holds potential pitfalls and obstruction for poorly understood mechanisms of immune destruction as they exact a relentless attrition.
But, Mr. Chairman, with increased funding for research, there is hope. Research is central to all that occurs in the transplantation process. The ASTP believes that we are on the threshold of many important scientific breakthroughs in the areas of immunology and cell biology.
We are on the threshold of developing safer and more effective means of immunosuppression to combat the complex pathways of acute and chronic rejection. With further insights, we may see the dawn of conditioning regimens that may one day lead to indefinite and drug-free immunologic tolerance. In parallel, we may devise means to overcome the daunting immunologic hurdles of xenotransplantation, the transplantation of a potentially limitless supply of animal organs.
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Finally, advances in developmental cellular biology may one day lead to reconstruction of human tissues and organs damaged by disease, and restore these to health and normal function. None of these goals are possible without strong support for research.
Because of this, the ASTP strongly urges the subcommittee to continue its leadership in the area of biomedical research and provide a 15 percent increase in funding for the NIH for fiscal year 1999. By continuing to increase the level of funding, this subcommittee will achieve the goal of doubling the NIH budget in 5 years, a goal supported by the ASTP, and as you have just heard, by the societies who are members of the Ad Hoc Coalition for Biomedical Research.
With this level of support, this subcommittee and the Congress as a whole will have the personal satisfaction of knowing that they are responsible for expanding the general transplantation research authority at the NIH, and in turn will be providing new hope to the countless citizens of this country who may one day benefit by these efforts.
Thank you, Mr. Chairman and all the members of your committee for allowing me to present the views of the ASTP and the transplant community.
[The prepared statement of John Neylan, M.D., follows:]
Offset folios 132 to 139 insert here
Mr. PORTER. Dr. Neylan, thank you very much for your excellent statement. You kind of give us a hope for the future that—I remember talking to a physician about 10 years ago saying that we are on the edge of being able to replace worn-out or defective organs, and now you are telling me that that is increasingly coming true, and all we need is a stronger commitment to research to make it happen even more rapidly.
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So we appreciate very much your testimony this morning. Thank you for being with us.
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness]
—————
Wednesday, January 28, 1998.
WITNESS
DR. HARRY S. JACOB, THE AMERICAN SOCIETY OF HEMATOLOGY
Mr. PORTER. Dr. Harry S. Jacob, President-Elect of the American Society of Hematology, representing that society.
Dr. Jacob.
Dr. JACOB. Good morning.
Thank you, Mr. Chairman, for letting me meet with you today. I am a professor of medicine at the University of Minnesota and President-Elect of the American Society of Hematology. Our society has over 8,000 active members, and probably hosts approximately 15,000 attendees at our annual scientific meeting. Our membership includes physicians who treat blood diseases and scientists who study the causes of those diseases.
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I would like to begin by thanking you for your sustained support of biomedical research, and by endorsing your vision that this support should be broad and flexible.
I shall take the next few minutes to discuss how your additional support might help us in our mission to improve patient care. I shall in this forum use two relevant examples: bone marrow transplantation and gene therapy. I will provide other examples in my written testimony.
Bone marrow transplantation is an increasingly-utilized and lifesaving procedure that was invented by hematologists. In fact, a member of our society, Don Thomas, recently won the Nobel Prize for his pioneering work in this area. At present, the procedure is used to treat patients with various forms of leukemia, as well as bone marrow failure and rare immunodeficiency syndromes which affect particularly children.
Also, promising new uses of the technique have been reported in hematologic patients with sickle cell anemia and Cooley's anemia. There is also growing excitement about its ability to treat nonhematologic diseases like systemic lupus, rheumatoid arthritis and multiple sclerosis.
The major limitation in bone marrow transplantation is that the procedure works best when patients have a genetically compatible brother or sister. Unfortunately, this favorable situation occurs for only 1 in 4 transplant candidates. Others must settle for riskier transplantations from genetically matched but unrelated donors, or they may have to forego the procedure altogether. Research is needed to understand how to safely transplant partially matched marrow so that this lifesaving procedure may become available to many more patients.
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The second example I would like to discuss is in the area of gene therapy, an area of great interest to all biomedical scientists and physicians. The bone marrow is the usual source of cells for gene therapy. Sickle cell disease, many forms of immunodeficiency, and severe bleeding disorders, like hemophilia, are just a few examples that may be amenable to correction with gene therapy.
The application of this technology is impeded, however, as we are still unable to regularly transfer genes into cells at high enough levels and maintain these genes in active form for prolonged periods of time. Fundamental research is needed to improve our understanding of these processes so this technology may become more useful. This will require a larger commitment to basic research, but successful resolution will reap enormous rewards for diverse patients. I predict that the appropriate use of gene transfer techniques will soon astonish even the most cynical, and remarkably improve our Nation's health.
The American Society of Hematology is committed to research because our members constantly confront the limits of medical knowledge as they treat catastrophic diseases of the blood, like leukemias, lymphomas, and sickle cell anemia. Our members are also clear that what they are able to do for their patients is based almost entirely on the fruits of previous research.
One example of our commitment to research is that we allocate a major fraction of our limited resources to the funding of fellowships and grants to young investigators. Our members know, however, that our site, although well-intentioned, can merely seed and supplement what the Federal Government sustains through its funding of research.
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We ask that you continue your commitment to all high-priority research by supporting a 15 percent increase in NIH funding for fiscal year 1999, as recommended by the Ad Hoc Group for Medical Research Funding. We fervently hope that you can build on the administration's proposal and develop a method to double the NIH budget in the next 5 years.
On behalf of our society, thank you for your attention today, and for your very hard work and generous past support.
[The prepared statement of Dr. Harry Jacob follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Jacob, thank you for your testimony. I am sure you are aware that whenever the subject of bone marrow transplantation arises, there is always at the table in this subcommittee a champion of that cause, and that is Bill Young of Florida. So we put that at a high priority, not only because of its intrinsic need and value, but because Bill was always there telling us we should. So we appreciate very much your testimony this morning. Thank you for coming down to be with us.
Dr. JACOB. It is a pleasure to meet you finally.
Mr. PORTER. We have now completed 10 of the 20 scheduled witnesses this morning. We have done so in approximately an hour. We are going to stand in recess for about 3 minutes, and then attempt to allow the next 10 witnesses the remaining hour. We stand in recess briefly.
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[Recess.]
Wednesday, January 28, 1998.
WITNESS
DR. WADI N. SUKI, THE AMERIAN SOCIETY OF NEPHROLOGY
Mr. PORTER. The subcommittee will come to order. Our next witness is Dr. Wadi N. Suki, President of the American Society of Nephrology, representing that society.
Dr. SUKI. Thank you, Chairman Porter, for allowing me the opportunity to speak before your committee this morning.
I am Wadi Suki. I am a professor of medicine and Chief of Nephrology at Baylor College of Medicine in Houston. I am the current President of the American Society of Nephrology.
Our society is the largest professional society in nephrology. We have a membership of some 6,500 clinicians and scientists dealing with function and disorders of the kidney, and dedicated to curing kidney disease. We are here to speak in support of the increased funding of the National Institutes of Health in general, and the National Institute of Diabetes, Digestive and Kidney Diseases, in specific.
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Mr. Chairman, this country has a very heavy burden in terms of patients with kidney disease. In our country today there are approximately 300,000 patients who suffer from end-stage renal disease. Their numbers increase by approximately 70,000 new patients every year.
The cost of taking care of these patients is staggering. The total cost approximates some $13 billion, and these patients are increasing, had been increasing at the rate of some 9 percent per year. Hypothetically, due to some of the advances in research, the rate of growth seems to be slowing down, but in the last 3 years has been on the order of about 7 percent per year. At this rate, we anticipate in the next 10 or 15 years there will be something between 600,000 and 900,000 patients with kidney failure in this country.
The major causes of kidney failure are diabetes and high blood pressure. These two disorders affect disproportionately some of the minority groups in our country, particularly Hispanics and African-Americans. The incidence of kidney failure in the African-American is 5 or 6 times that in the white American. The incidence of end stage kidney failure in the Hispanic American is 2 to 3 times that in the white American. So high blood pressure and diabetes represent major concerns for our society and our membership.
In spite of the huge cost to our Nation for treating patients with end stage renal disease, the expenditure on research on kidney disease is only about 2 percent of the total cost. We think that increased spending on research in this area will bear important fruit and hopefully increase the quality of life, save lives, and hopefully in the end save our country money as well.
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Now, major advances have been made in research in kidney disease in the past several years. Experiments in Dr. Brenner's laboratory in Boston in rats have led to innovations of treatment that now has been shown to reduce the development of kidney failure in diabetes by 50 percent. This is estimated to save this country something on the order of $2.6 billion in the next 5 years. This is a testimony to how good an investment in basic research is, in that it would eventually bear fruit at the clinical level.
There have been very many other advances in recent years. The gene for cystic kidney disease and a variety of other genetic and familiar diseases have been cloned and the defects identified. It is our hope that better understanding of the functions of all of these genes will culminate in cure and prevention.
There are a lot of other studies that demonstrate exciting new findings about arresting experimental nephritis in experimental animals. These advances are about to be tried in human beings, so there is a lot of promise for new breakthroughs and new advances.
There have been many advances. When we look back to when I started in nephrology back around 1965 and where we are today, some 30 years later, major advances have been made. Dialysis and transplantation were dreams. Now they are realities. Unfortunately, as you have heard from my colleague, Dr. John Neylan, neither treatment, dialysis, nor transplantation is currently perfect. Many more advances need to be made and much more research needs to be made.
[The prepared statement of Wadi Suki, M.D., follows:]
"The Official Committee record contains additional material here."
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Mr. PORTER. Dr. Suki, our time is up. Let me say two things. First, and I say this often, but I want to emphasize it; none of us up here consider these matters in a vacuum. My wife has diabetes, so I know the dangers of that disease and how it affects the population of our country and the whole world.
Secondly, I recently have been shown some home dialysis units that promise, they tell me, to vastly reduce the cost, which is a major cost in your field. Do you have anything to tell us about that technology and whether it is as promising as I have been led to believe?
Dr. SUKI. Yes. Indeed, dialysis in the home is now feasible and has been for some time. It is practiced in most large centers and in many smaller ones, as well. Somewhere between 12 and 15 percent of patients on dialysis actually do undergo dialysis in the home, and dialysis is being perfected, but I think the point that I have tried to make earlier is that dialysis does not replace the normal kidney, and therefore, our task should be to try to prevent kidney disease.
Mr. PORTER. Absolutely. My understanding from the people that I talked to is that if this could be very broadly adopted, that it would save a great deal in terms of health care costs and, in a sense, free up dollars that could be spent for research in finding a way to prevent or cure the disease.
Dr. SUKI. Very importantly, it could save a great deal in terms of personal hardship. Patients on dialysis have to travel to a dialysis facility 3 times a week, which is a considerable hardship and cost.
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Mr. PORTER. Thank you very much for your testimony, Dr. Suki.
Dr. SUKI. Thank you for allowing me to be here and for your support of biomedical research.
—————
Wednesday, January 28, 1998.
WITNESS
JOSHUA M. JAVITS, ALS ASSOCIATION
Mr. PORTER. Joshua M. Javits, a member of the board of trustees representing the ALS Association.
Mr. Javits, it is nice to see you again. Thank you for joining us.
Mr. JAVITS. Thank you very much.
Mr. Chairman and members of the committee, thank you for the opportunity to testify before the committee on behalf of the Amyotrophic Lateral Sclerosis Association and the 30,000 Americans afflicted with ALS, most commonly known as Lou Gehrig's disease.
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Speaking for myself and ALS, I would like to express my deep appreciation to you, Mr. Chairman, and the members of your subcommittee who over recent years have provided strong leadership and support for the research projects on ALS being undertaken by the NIH and the NINDS. I would also like to offer support for congressional efforts to double NIH's research funding over the next 5 years. As we all understand, a dollar spent on the disease today saves many lives and many dollars over the years to come.
We pledge to work with you, Mr. Chairman, and your colleagues on that crucial initiative. As you know, for the last 6 years the subcommittee has included language in the Labor-HHS appropriations bill that is specifically aimed at increasing the funding for ALS research at NIH within the existing NINDS budget. All of us associated with ALS are appreciative for these efforts and we look forward to working with the subcommittee this year and in the years to come until ALS is eliminated.
Mr. Chairman, I am a son of the late Jacob Javits who proudly served this country for 24 years as a Senator from the State of New York and as a Member of the House of Representatives for 8 years. I stress this point because my father died in 1986 after a valiant struggle with ALS, a degenerative and always fatal disease. While in Washington and later in private life, my father maintained an amazing schedule of practicing law and giving speeches and writing articles despite his diagnosis with ALS. As the disease progressed he required life support, including a respirator and a wheelchair, and eventually becoming virtually paralyzed.
ALS has also claimed the lives of other notables, and took the name of the baseball great, Lou Gehrig, as well as actor David Niven, jazz great Charles Mingus, boxer Ezra Charles, and former Vice President Henry Wallace, and the developer James Rouse.
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I serve as a member of the board of trustees of ALS. And ALS, to be specific, is a progressively degenerative neuromuscular disease that attacks the nerve cells and pathways in the brain and spinal cord. Motor neurons, among the largest of all nerve cells, reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When these motor neurons die, as with ALS, the ability of the brain to start and control muscle movement dies with them. The voluntary muscle action is affected and patients become immobilized, eventually leaving the person unable to speak or to eat or to breathe. Yet throughout the degeneration the mind remains completely intact.
ALS was first identified in 1869, but only recently have there been real discoveries that significantly advance the medical and scientific community's understanding of the disease, which underscores our belief that a cause and a cure can be found. To date there are no known causes, it is not known what the cause is, nor is there a cure for those afflicted with ALS. The majority of people diagnosed live only 2 to 5 years. Over 5,000 new cases are diagnosed each year.
ALS knows no boundaries and can strike anyone, regardless of age, race, color, or geographic origin. It is not a rare disease. It is projected that about 300,000 Americans alive and well today will ultimately die from ALS, more than die from Huntington's disease or multiple sclerosis.
Mr. Chairman, I want to mention something we are very proud of. Last year, with the inspired leadership of the late Congressman Walter Capps and Chairman Ben Gilman, H.R. 2009, the Amyotrophic Lateral Sclerosis Research and Treatment Act of 1997, was introduced in the House.
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This bill was the first bill Congressman Capps introduced while in the House and we are deeply honored by that fact. We are appreciative to Chairman Gilman for carrying forward the legislation in the wake of Congressman Capps' tragic death. The bill would allow Medicare to cover the cost of drugs used to treat ALS and would waive the 24-month waiting period for disabled persons to be covered by Medicare.
The last point is especially critical for ALS patients, who on average do not live more than 2 to 3 years after they become disabled. We believe that Congress, out of a sense of fairness and sound public policy, should look favorably on this legislation. To date 61 of your colleagues have cosponsored H.R. 2009 and we are hopeful that this number will continue to grow.
In the area of research, a major portion of ALS Association's annual budget is committed to fund ALS-specific research. The Association's grant program follows the format and rating procedures established by NIH. The Association, in the last 24 months, has funded over $4.7 million in funding. I would point out that the Association's research effort amounts to about 30 percent in addition to what NIH puts into ALS research.
Mr. Chairman and members of the committee, please accept our sincere appreciation for all the support you have provided for those afflicted with ALS and their families, the 30,000 people afflicted with ALS. We strongly urge Congress to continue the subcommittee's commitment to long-term medical research and to provide the funds necessary for NIH to carry out the mission. Thank you very much.
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[The prepared statement of Joshua Javits follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Javits, thank you for again appearing before our subcommittee. You have been a tireless advocate for preventing and controlling this terrible disease, and your father was a man who very clearly made a difference in this world. I think you are making a difference as well, and we very much appreciate your strong advocacy in bringing the dangers and scourge of this disease to our attention. Thank you for being with us.
Mr. JAVITS. Thank you for your very kind words, Mr. Chairman.
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
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Wednesday, January 28, 1998.
WITNESS
EDWARD L. SNYDER, M.D., AMERICAN ASSOCIATION OF BLOOD BANKS
Mr. PORTER. Edward L. Snyder, M.D., Director of the Blood Bank at Yale Medical School and Yale-New Haven Hospital in New Haven, Connecticut, and President of the AABB, representing the American Association of Blood Banks.
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Dr. Snyder.
Dr. SNYDER. Thank you. Mr. Chairman and members of the subcommittee, my name is Ed Snyder. I am Director of the Blood Bank at Yale, and the Yale-New Haven Hospital in Connecticut. I am testifying today as President of the American Association of Blood Banks in support of increased funding for NIH and NHLBI.
The AABB is a professional society for 8,500 individuals involved in blood banking and transfusion. We represent 2,200 institutional members, including community and Red Cross blood centers, and hospital blood banks that collect, process, and transfuse blood. Our members are responsible for virtually collecting all of the blood in the United States, and more than 80 percent of the blood transfused.
Throughout its 50-year history, the AABB's highest priority has been to maintain and enhance the safety of the blood supply. NHLBI is currently sponsoring several important transfusion medicine projects. There are, however, important opportunities in this field that require additional investigation to assure the safest possible blood supply.
I would like to emphasize five of these. First is detection of transfusion-transmitted disease. Despite the great progress that has been made in selection of donors who are at low risk for disease transmission and the use of and improvements to tests to eliminate infected donors, prevention of AIDS and other transfusion infections remains a top priority of transfusion researchers and all recipients of blood.
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Each improvement to testing has led to a decrease in the window period, the period of time between infection with a viral disease and the ability to detect the virus by a screening. The risk of acquiring viral disease through transfusion is lower than ever, yet worldwide travel and demographics could spread new viruses, bacteria, and parasites into the U.S. blood supply. I call your attention to the concern about the spread of CJK or mad cow disease into the blood supply in the United Kingdom. Prevention of transfusion-transmitted disease remains a priority of transfusion research.
Secondly is the role of biologic response modifiers in transfusion reactions. Studies have identified several substances released by human cells which play a role in changing the patient's response to transfusion. These adverse responses, known as transfusion reactions, range from fever and chills to severe allergic reaction, shock, and even death. Studies on the role of these chemicals and adverse reactions to transfusion and research into how to modify and control them is now necessary.
Third is the immunology of transfusion. Even though blood transfusion is a lifesaving therapy, transfused components are still recognized as a foreign substance by the human body. Blood transfusion can produce adverse changes in the body's immune system. This includes decreasing the natural defense of the patient for their fight against bacterial infection, or by decreasing their ability to prevent cancer recurrence. Lifesaving transfused blood may thus actually promote disease. Bone marrow transplant patients, cancer patients, and other immunosuppressed recipients are all at risk for immunologic complications. Fundamental basic research is needed to gain knowledge on how to combat these aspects of transfusion.
Fourth is stem cell research. The AABB is pleased that NHLBI is funding a 5-year study of transplanting stem cells collected from cord blood. Stem cells may become the ultimate vehicle for curing diseases through gene therapy. This initiative, however, poses new questions, and we support additional research in this area.
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Lastly, transfusion medicine, research training, and its clinical infrastructure needs further evaluation. Our infrastructure is currently nonexistent. We support development of linked centers of transfusion excellence for research and training. Such centers could provide a critical mass of resources needed to accomplish NHLBI-sponsored research in transfusion medicine.
The American Association of Blood Banks endorses a 15 percent increase in NIH funding for fiscal year 1999 as a first step towards doubling the goal of NIH—doubling the NIH budget over the next 5 years. This recommendation is consistent with congressional support for doubling the amount authorized for basic science and medical research for a number of research agencies, including NIH. This level of funding would also sustain the rate of growth NIH has experienced in the past decade.
Mr. Chairman and subcommittee members, on behalf of the many NHLBI-funded transfusion scientists, thousands of health care professionals, and millions of transfusion recipients, we appreciate the opportunity to discuss Federal support for research and transfusion medicine before the subcommittee. Thank you.
[The prepared statement of Edward Snyder, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Snyder, can I ask a question? The best way to avoid the transmission of diseases through transfusion is for an individual to have their own blood preserved; is that not correct?
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Dr. SNYDER. The best way to avoid it is to avoid the transfusion.
Mr. PORTER. But if you have to have one, have your own blood supply?
Dr. SNYDER. You are absolutely right.
Mr. PORTER. How long does blood last if someone were to provide their own blood in sufficient quantity? How long could you keep it?
Dr. SNYDER. In the liquid state, it can be stored up to 42 days. Frozen, it can be stored up to 10 years.
Mr. PORTER. Ten years?
Dr. SNYDER. Ten years, frozen.
Mr. PORTER. In the frozen state, is it usable in most cases of transfusion?
Dr. SNYDER. Yes. The red cells you can freeze. It is a fairly complex issue. If you need platelets which help blood clotting, that cannot be frozen in most cases. It can in some special situations. Plasma can be frozen for up to a year. Red cells can be frozen for 10 years.
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Mr. PORTER. Are they the most significant in transfusions?
Dr. SNYDER. It depends on the illness. If someone has cancer, they may need platelets more than red cells. There is no easy answer.
Mr. PORTER. If you could, by law, require people to put aside at a certain age so much of their own blood, that might help a great deal in providing blood for transfusions if they need them, and also to prevent the transmission of diseases through transfusions; correct?
Dr. SNYDER. The Association certainly recommends that people donate their own blood for their own use wherever possible, and also those who are healthy enough and pass the required screening tests, donate for the general blood supply. We don't have enough blood donors to keep the Nation's blood needs kept going.
Mr. PORTER. Sometimes I think that people just need to be encouraged to do things that they would naturally want to do but don't have enough push to do it. I have also thought if we could simply tell people that when they reach Medicare eligibility, they have to make a decision. They don't have to do it, but they have to make a decision whether they want to leave a living will or not. They have to make a conscious choice as to whether they want heroic measures applied if they become what a doctor would determine as terminally ill.
I think most people would do that without any problem. I don't think they would have any problem with it. Some would decide they don't want to make a living will and would want the procedures, but most I think would say, no, not at that point. We will trust medical judgment and allow them to make the decision for us.
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It seems to me that maybe perhaps if at the same time we said, wouldn't it be a good idea to put aside some of your own blood if it is needed, we might accomplish a great deal in a very practical way, without any kind of intrusion on people's rights.
Dr. SNYDER. Certainly using such blood for that same individual would be reasonable. The concerns that are shared by the members of the community and the FDA would be if people were asked to donate blood for other people, with a similar sense of urgency, because of the concern over the accurate receipt of the blood donors' screening, that people are not donating for reasons other than altruism, because of the studies that have shown that when people are asked to donate and are urged to donate perhaps a little too much, that they may not be 100 percent truthful in the donor history.
It is a very complicated issue. But for autologous, as you appropriately point out, it would be reasonable to encourage people to donate their own blood for surgery that is planned.
Mr. PORTER. Thank you, Dr. Snyder. I have taken much more time than I should, but I am interested, obviously, in the subject.
Dr. SNYDER. Thank you very much.
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Wednesday, January 28, 1998.
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WITNESS
ALAN G. KRAUT, Ph.D., AMERICAN PSYCHOLOGICAL SOCIETY
Mr. PORTER. Allen G. Kraut Ph.D., Executive Director of the American Psychological Society.
Mr. KRAUT. Mr. Chairman, I am delighted to be here on behalf of the members of the American Psychological Society, many of whom receive NIH grants for such topics as brain behavior, addiction research, human development, aging, mental illness, hearing and vision research and chronic pain, to name just a few.
I ask that my written statement be entered into the record and I will just summarize here.
Let me begin by expressing our sincere thanks for the increase you have already given NIH, and to say that we will work hard with you, including visiting the Committee on the Budget, to double the NIH budget over the next 5 years.
As part of the Ad Hoc Group for Medical Research Funding, we are asking for a 15 percent increase in NIH as a first step towards that goal. But can NIH absorb this increase so quickly? I know that behavioral research stands ready. We are poised, both in terms of the role behavior plays in serious health problems and in the field's capacity to proceed in many important directions.
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Last fall, Mr. Chairman, during your hearings on the mind, body, and health, we were all encouraged to hear you talk about finding ways to open the door to increase NIH's receptiveness to behavioral science research. Let me suggest that one way would be to make this open door theme a standard part of your conversations with Institute directors as they appear here in front of you. We think that even a single consistent question from you, such as can you tell me how you might be encouraging behavioral research in your Institute, would send this important message.
Increasing NIH's receptiveness is my main concern today. Some of our Nation's most critical health questions involve behavior: What goes on in the thinking of young people that leads them to start drinking, smoking, taking drugs? When do we acquire patterns of behavior that may be with us for the rest of our lives? What about connections between stress and health? How does genetics interact with behavior? What can we do to help memory as we age?
There are many others, but NIH resistance to the science that addresses these kinds of questions continues, despite recommendations from you, the National Academy of Sciences, even from its own Institutes. One example is how NIH responded, or rather didn't respond to recommendations from the National Academy of Sciences to increase training for behavioral scientists specifically through national research service awards.
In a congressionally mandated assessment of training needs, the National Academy said that the size of NIH stipends should be increased and that the number of awards for behavioral science and for several other areas also should be increased. Since 1995, this committee and the Senate committee have been asking NIH to implement those recommendations, and after a 3-year delay in responding, the NIH now says the amount of money awarded in the NIH stipend will be increased but not the number of awards in behavioral science or in other areas. NIH cites budget concerns for this selective implementation, saying that neither National Academy members nor Congress ''fully appreciated the costs.''
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What are the costs? The National Academy's behavioral science recommendation to add fewer than 400 trainees would add about $4 million to the NIH budget, spread over 3 years and across all the Institutes. The cost clearly is not the concern here. So once again we ask the committee to encourage NIH to increase the number of their research service awards.
I should note that several Institutes have their own recognized needs for more behavioral researchers. With encouragement from this committee and from the Senate they have developed small grants called BStart that are awarded to new Ph.Ds in behavioral science. We ask you to continue to encourage the use of BStart throughout NIH.
NIH now has an Office of Behavioral and Social Sciences Research. That is the logical place to take a lead on these training objectives and on cross-cutting behavioral research priorities. But OBSSR's budget is tiny, only $2.6 million. We ask that that budget be increased, even to approach $20 million. We are in an era of exceptional promise in behavioral science, but we need a more encouraging Federal environment in order to realize its potential.
In my written statement, I have asked for your support for the behavioral science initiatives that are taking place in several individual Institutes. But despite this activity, NIH still needs to recognize that behavioral science is a core element in its mission of research and public health.
This committee has shown extraordinary largesse in the annual NIH budget and we are very grateful for that support. Now we are asking you to encourage NIH leadership to take meaningful steps to ensure that the health of the Nation receives the full benefit. Thank you.
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[The prepared statment of Alan Kraut follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Kraut, thank you for your excellent statement. I have to say that obviously I agree with where you want to go. The process by which the Congress interacts with NIH and attempts to put its opinion into their thinking is a very complex and subtle. We do not feel that it is up to us to tell NIH what to do. They are scientists and we are not.
We do have matters that we are very concerned with personally, and that we encourage them to address. The hearings or briefings that we had on the mind and its role in health and healing was meant to convey a message to them that this is an area that we think has been neglected in a broad sense, and to encourage them to be more responsive. So we will continue to press on that process without the heavy hand of direction. We will have to see what comes of that, but it is something that is part of a much broader process.
We realize also that NIH doesn't exist in a political vacuum within the scientific community either, and that scientists are at all times attempting to influence the directions of NIH and the priorities that NIH undertakes. So it becomes an even broader process where we all kind of impact this great institution that we all admire and respect and try to move it a little bit in the direction that we think it ought to go. We appreciate very much your testimony, again, and thank you for being with us. We will do our best to be responsive.
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Wednesday, January 28, 1998.
WITNESS
KAREN MURRAY, COALITION FOR HERITABLE DISORDERS OF CONNECTIVE TISSUE
Mr. PORTER. Karen Murray, member, National Marfan Foundation and Chair, National Marfan Foundation's Have-A-Heart Campaign, testifying in behalf of the Coalition for Heritable Disorders of Connective Tissue.
Mrs. MURRAY. Good morning, Mr. Porter. I am Karen Murray, a member of the National Marfan Foundation, member organization of the Coalition, which represents more than one-half million Americans affected by heritable disorders of the connective tissue. Marfan's syndrome is one of 200 such disorders which include names most of us have never heard of unless or until a family member is diagnosed with one.
My son Michael was born August 13, 1991, 6 years ago, in one of the top hospitals in New York City. He was born with a dislocated hip, long fingers bent backwards at the knuckle, and an indented chest bone. I overheard the physicians discussing among themselves, but not directly with me, the possibility of Marfan syndrome. They sent Michael and me for echocardiograms, which are scans of the heart, pronounced us fine, and released us from the hospital.
The same doctors continued to follow Michael for the next 5 years, during which time he grew faster, longer, taller, and more awkwardly than all of his peers, and his indented chest became more pronounced. I went to all kinds of specialists, all but a cardiologist. I would constantly describe Michael's symptoms: Why is he so tall, thin, awkward, loose ligamented, with an indented chest, long fingers, arms, and legs? I was told to let it go, he is a beautiful, healthy child. But I knew there was something wrong.
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For Michael's fifth birthday, I bought him an Apple computer which came with a free CD ROM called the Family Doctor. Late one night, when he was sleeping, I clicked into it. As I read the first paragraph under Marfan syndrome, I recognized the word Marfan syndrome; children with Marfan syndrome grow taller than their peers. They have indented or protruded chest bones. Fingers are disproportionately long, excessive joint mobility, muscle weakness, and so on.
The very next morning, after not sleeping, I brought him back to the same prominent New York City hospital where he was born and 5 hours later, after demanding an echocardiogram, my diagnosis was confirmed. Michael's aorta was indeed dilated and he did indeed have Marfan's syndrome.
Marfan's syndrome is a genetic disorder that affects the connective tissue throughout the body. In almost all cases it affects the heart and the aorta. Over 500,000 Americans are affected by Marfan's syndrome and related connective tissue disorders. At the time of Michael's diagnosis his aorta was already dilated. Severe dilation can lead to dissection, which is what we know as an aneurysm.
If medical personnel can't recognize the signs, the outcome is usually fatal. My point is this. Doctors at the best hospital in New York City, extremely aware of Marfan's syndrome and who suspected Marfan's syndrome at birth, failed to make the diagnosis. In the hands of the best medical personnel in New York City, my son Michael slipped away. Had I not heard the word Marfan or bought him a computer, Michael would have been another statistic in his teens.
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But it doesn't have to be that way. Although Marfan's syndrome is incurable and a progressive disorder—which is difficult for me to say those words—it is diagnoseable and treatable. So I have hope. As a parent of a 6-year-old Marfan child, I am nervous but optimistic that Michael will be okay. I now know to have his heart monitored every 3 months. I have him on medication in the hope that his aorta will be less stressed.
I live daily with the fear of when or how often will Michael's aorta dissect. Marfan's syndrome also affects all tissue throughout the body and presents orthopedic problems such as loose joints, scoliosis, elongated, uneven bones in the ribs, chest wall, spine, hips and legs. I cannot express as a mother the concern and the amount of questions I have.
There is still so much I don't know, and I am often told, I am sorry, we haven't researched that yet, especially not in children. Most children who go undiagnosed and untreated die at a young age. Today, tens of thousands of children go undiagnosed. Before Michael was born I never heard the word Marfan. I never thought about connective tissue.
Now there is not a night that I don't fall asleep without wondering or worrying about the fact that I am giving my son calcium channel blockers every single day in the hope it is helping his aorta, but what are the side effects after years of calcium channel blockers? No one can tell me. I keep asking if calcium channel blockers are okay for children. They don't know. There is no research.
Can and should Michael exercise at all? Can he take a regular gym class? They don't know what to tell me. What is more effective, surgery or a brace for his scoliosis? Do children with Marfan syndrome have weak tissues in their respiratory system? Is that why my son also has asthma, since it is not in my family? Why do Marfans' lungs collapse? Since Michael has so many orthopedic issues, what can I do to help him live a life of less chronic pain? I am scared to have another baby, but I would love to. Are there tests I can take to determine the health of the fetus?
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Research is needed in all of these areas. It is essential. Undiagnosed Marfan patients end up in the emergency room. The emergency room staff does not know what to look for and most Marfan patients die. I am fortunate that I at least know that he is diagnosed. The key is to build awareness and educate the medical community, from OB–GYNs to pediatricians to emergency room doctors, so they can recognize and diagnose Marfan's syndrome. Early diagnosis and careful daily management is critical in order to preserve and enhance the life of a Marfan patient.
Similar challenges are faced by other heritable disorders of connective issues. The advances in genetic research today bring hope to the one-half million individuals affected with these disorders. Yet more dollars are needed. The Coalition supports the proposal of the Ad Hoc Group for Medical Research Funding, which calls for a 15 percent increase in funding for the NIH in 1999 with a view towards doubling the budget over the next 5 years. Please help fund these important programs so we can learn more about how to care for Michael and so the medical community is more aware of Marfan syndrome and heritable disorders of connective tissues, so that lives can be saved. Thank you.
[The prepared statement of Karen Murray follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mrs. Murray, I can't think of a more compelling case for providing resources for both research and helping the medical community understand and diagnose this disease. We very much appreciate your testimony.
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I think Marfan's only came to the attention of the American people recently, in respect to Abraham Lincoln. There was some thought that perhaps he was a victim of that disease. I think they even were going to—and I can't remember the outcome—look at the bone, the DNA.
Ms. MURRAY. They still are. It is suspected that he had Marfan's syndrome, along with Chris Patton and lots of other famous people. They suspect John Larsen, the director and writer of Rent, and lots of other famous people.
Mr. PORTER. The fact that famous people may have such a disease very frankly often helps the American public to understand the disease better. It gets their attention. I often tell—we have a lot of celebrities come and testify before this subcommittee regarding various diseases, and I think that helps a great deal for people to understand the disease, and gets them focused on the fact that even famous people suffer from these diseases, and that I think helps build us a support base for the research that we need to address them.
Ms. MURRAY. And more awareness.
Mr. PORTER. Thank you for coming to testify. I really appreciate that.
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Wednesday, January 28, 1998.
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WITNESS
DEBORAH KLEIN WALKER, ASSOCIATION OF MATERNAL AND CHILD HEALTH PROGRAMS
Mr. PORTER. Deborah Klein Walker, Ed.D, President, the Association of Maternal and Child Health Programs, testifying on behalf of the association.
Dr. WALKER. Thank you. I am Deborah Walker, President of the Association of Maternal and Child Health Programs. In Massachusetts, I serve as the Assistant Commissioner of Family and Community Health within the State Health Department. Thank you very much for the opportunity for us to appear before you today.
On behalf of the Association, I appreciate the subcommittee's support of the maternal and child health services block grant. The block grant forms the essential framework on which States have built and maintain their systems of care for women, children and youth.
For over 60 years the MCH programs have helped to reduce maternal and infant mortality, improve the health of newborns by preventing life-threatening diseases, improve the health status of school-aged children, prevent adolescent pregnancy and other at-risk adolescent behaviors, and assist children with special health care needs.
State MCH programs carry out core public health prevention activities, as well as provide direct services for women and children who lack the necessary health care. Investments in public health, including MCH services, is cost-effective and results in improved health outcomes.
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For example, newborn screening prevents chronic diseases and disabilities through early detection, diagnosis, and treatment of disorders. In Illinois, 99 percent of all newborns are screened for at least 6 disorders, including sickle cell anemia. Tobacco use, exposure to environmental tobacco smoke, poses exceptional and immediate risk to pregnant women and children. In 1995, the estimated costs of birth complications attributed to smoking were conservatively estimated at $1 billion. State MCH programs have worked in partnership with community-based groups and the private sector to prevent and end nicotine addiction.
I would like to also add, you have heard a lot about a very important research, but it takes an infrastructure to get the results of this research to the public at the lay level in the community. The MCH block grant is such a vehicle. MCH funds have supported major campaigns like the ''Back to Sleep Campaign,'' which has drastically brought down deaths due to SIDS, and is also funding campaigns on the importance of folic acid for pregnant women, so that spina bifida will be prevented.
In addition to these public health prevention strategies, the MCH block grant directly serves over 17 million women and children, including almost 1 million children with special health care needs. The health of our Nation's pregnant women and children has improved dramatically over the 50 years.
Through advancements in medical technology and improved access to care, we have seen significant reduction in many adverse health outcomes. However, many things still fall short of where we want to be, especially in our underserved and minority populations. For example, in the last 15 years, infant mortality for both whites and blacks has decreased considerably, but the gap between whites and blacks has actually increased. Smoking rates for adolescents are going up, injuries remain the leading cause of death for children and women, and infants are at an increased risk for things like HIV and AIDS.
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Last year, and we want to compliment you, Congress took significant steps to address some of these problems through passage of the State children's health insurance program. This health coverage expansion presents States with tremendous opportunities. State MCH programs are very much partnering with State Medicaid agencies during this implementation stage to figure out best how to approach and spend those funds within each State. However, with this tremendous expansion we still know that not all children will be covered, and we also know that those who are even covered by insurance will not have all the necessary services they need. Therefore, the MCH block grant is still needed in every State.
The congressional budget estimated that the new law would cover an estimated 3.4 million uninsured children when it is fully implemented. This leaves 3.6 million uninsured children still out there. The children's health insurance program again does not provide access to care, outreach and intake, services to uninsured pregnant women, underinsured children, especially those with special health care needs, comprehensive services for special health care needs, home visiting services, school health services, and adolescent health services, just to name a few.
These are responsibilities that the MCH block grant will continue to address, in addition to the fact that the MCH programs will continue to ensure the availability of public and private providers in rural and underserved areas, support and coordinate services for children with special health care needs, and get pregnant women and children into these health insurance programs, and get them signed up so they will receive the benefit of the program.
Mr. Chairman, our Nation is making strides in the health status of women, infants, children, youth and their families, but we still have a long way to go. Through wise investment in the maternal and child health services block grant we can see further improvements in the health of mother and children. This MCH block grant is a flexible block grant to States. States have used it successfully to develop local systems of care which have addressed these issues.
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The MCH block grant is in fact the point of accountability for the entire MCH population in each State. For these and other reasons, the association recommends a funding level of $705 million, only a 3 percent increase over the last year. With sufficient funding, the maternal and child health services block grant will continue to play a vital role in improving the health status of all children and pregnant women in every community in every State of this Nation. Thank you.
[The prepared statement of Deborah Walker follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Walker, that was a very articulate statement. We will, as you know—in a certain sense you are preaching to the choir, but we will do our very best to meet that goal.
Dr. WALKER. Thank you very much.
Mr. PORTER. Thank you for coming to testify.
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
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Wednesday, January 28, 1998.
WITNESS
ROGER BURNS, PRIVATE CITIZEN, HIMSELF
Mr. PORTER. Roger Burns, a private citizen testifying on his own behalf. It is unusual, and we welcome you.
Mr. BURNS. Thank you, sir.
Mr. Chairman, my name is Roger Burns. I publish a widely read newsletter with a readership of over 10,000 on the topic of chronic fatigue syndrome. I am also a leader in the effort to change the name of this illness. I will today make some recommendations to you about the name change issue which has been a policy interest of your committee.
As you are aware, there is a strong stigma associated with the name chronic fatigue syndrome. Outdated science reports have in the past prompted misinformed notions of ''it is all in their minds,'' et cetera, on the part of the public, employers, disability insurers, and by all too many medical professionals, despite recent scientific research that underscores the seriousness of this disease.
This stigma adds a great deal to the disruption of the patient's lives, often obstructing the delivery of needed medical care, interfering with the ability to collect merit insurance claims and obstructing family life. Sadly, the scientific knowledge that has been accumulated, which does validate this emerging illness, has been disseminating very slowly to the general medical community and to the public.
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I issued a survey last year to CFS patients about the change-the-name issue, which was graciously co-published by the CFIDS Association of America. The results from 668 respondents showed that over 90 percent of those responding want the current name to be replaced, and that many specific alternatives were deemed suitable to overcome the stigma of the current name.
Many CFS patients are grateful that your committee's report for fiscal year 1997 asked the HHS Secretary to, and I quote, ''convene a committee for the purpose of examining the name change issue, and to report back within 6 months of the bill's enactment with recommendations for a new scientific name or eponym that more appropriately describes the illness known as chronic fatigue syndrome.''
Those scientists who are the most familiar with CFS do say openly at their medical conferences that they now know that this is a serious illness. But this current state of knowledge is not yet widely understood by most doctors. What better vehicle could there be to help eradicate the stigma of CFS than for the Department of HHS to hold a press conference to declare that, ''We now know, given a decade of accumulated evidence, that CFS can be a very serious illness, and to underscore our new knowledge, we are changing the name of this illness''?
To fulfill the request of this Appropriations Committee, the HHS Secretary delegated the name-change issue to her CFS coordinating committee, which, however, voted at its October 2, 1997 meeting to postpone indefinitely any change of name until such time as more scientific evidence might appear to justify the choosing of a wholly new physiologic-based name. That committee then disbanded its working group on this topic.
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The CFS coordinating committee's public discussion gave little attention to the already-established alternative names already used in scientific literature for referring to this illness, nor to the possibility that an eponym might be chosen. In short, the most difficult option was focused on. The committee did not discuss—the coordinating committee did not discuss the stigma of the current name and its burden on the patients, which was the original reason for calling for a change in name. In addition, public testimony was excluded until the end of the meeting, when the decision to suspend the name-change issue had already been made.
I believe there are two reasons why the CFS coordinating committee suspended the name-change issue. One, there was no permanent Assistant Secretary for Health during 1997, when the coordinating committee took up this issue. The Assistant Secretary for Health chairs the CFS coordinating committee. Therefore, there was not sufficient leadership within that committee to ensure that the name change was given a complete hearing.
Two, none of the scientists who serve on the CFS coordinating committee can afford, as individuals, to recommend a specific alternative name. These scientists are already putting their careers at great risk by focusing their research on CFS. They could be throwing away their careers by becoming any more prominent in this field than they already are. That is right, scientists who study CFS are stigmatized by other scientists.
With these facts in mind, I recommend the following steps to the Appropriations Committee: A, when the new Assistant Secretary for Health is in place, it will be very important to sensitize that official to the needs of the CFS community and about the name change/stigma issue in particular.
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The only way to make deliberate progress in legitimizing this disease is to have leadership from some official who has the respect of the research community, but who is also independent enough that their personal career does not depend on getting published as a researcher. The ideal official for this task would be the Assistant Secretary for Health. Please help to motivate and sensitize the new Assistant Secretary when you discuss HHS matter with him in his appearance before this committee later this year. For our part, those of us in the CFS community will work to educate the new Assistant Secretary about these issues in detail.
I have one further point to make. The CFS coordinating committee is truly incapable of recommending any alternative name in the foreseeable future because that committee is comprised largely of government bureaucrats and vulnerable researchers, none of whom can afford to recommend anything that might be perceived as too innovative in this politicized field, even merely changing the name of the illness.
Yet some participation by scientists will be essential in giving credibility to the recommendations of a name-change panel. Therefore, it would be most helpful if the Appropriations Committee were to renew its call for a new name or eponym, and to ask the HHS Secretary to appoint a ''committee or workshop or a forum'' that would include not only scientists but also general practitioners of medicine, and patients who are advocating a change of name for the illness.
I thank you for your attention.
[The prepared statement of Mr. Roger Burns follows:]
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"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Burns, I am not sure you are aware of this, but this whole issue was one that I began working on when I first began as a member of this subcommittee because a constituent of mine came to me and said his daughter had this health problem that the medical community was not recognizing for what it was, and we began then pressing on NIH, through language in our bill and later on with direction, to conduct research.
At the time it was called Epstein-Barr syndrome. No one wanted to take it seriously, and by pressing on the process a great deal, they began to do some work and found out that it was in fact a serious disease. So I am very interested in what you are telling me. We will continue to press on this process to try to get a decision.
Now, tell me why chronic fatigue syndrome is not a description that you want to stick with.
Mr. BURNS. A couple of reasons. One is that there was a lot of brouhaha in years past about CFS not being real, about it just being depression, et cetera. That has glommed onto the current name.
It can glom on easily to the current name, because although fatigue has a broad connotation in the field of science, in everyday language, fatigue just means mildly tired. So the technical scientists would say that, well, it is an appropriate name if you look it up in a medical dictionary, but it is so easy to——
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Mr. PORTER. Not taken seriously, as it should be?
Mr. BURNS. Yes.
Mr. PORTER. One of the reporters that had covered Congress from my district, but here in Washington for years suffered from this disease, was given six months medical leave to try to cope with it, and ended up finally retiring, because he couldn't cope with it. So it is, in my mind, a very serious disease that afflicts many, many Americans. Many are unaware that that is what is afflicting them.
As I say, we take it seriously here and we will do everything we can to move this process along and work with you on it.
Mr. BURNS. Yes. Thank you very much.
Mr. PORTER. Thank you for your testimony.
Wednesday, January 28, 1998.
WITNESS
GERALD J. CHADER, Ph.D., M.D.h.c., NATIONAL ALLIANCE FOR EYE AND VISION RESEARCH
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Mr. PORTER. Gerald J. Chader, Ph.D., M.D., Chief Scientific Officer, Foundation Fighting Blindness, representing the National Alliance for Eye and Vision Research.
Good afternoon.
Dr. CHADER. Mr. Chairman, for the last year I have been the chief scientific officer of the Foundation Fighting Blindness. It is based in Baltimore. It is a nonprofit foundation funding basic research and clinical research to blinding diseases. Before that I did about 25 years of research in ophthalmology at Harvard and at the National Eye Institute in Bethesda.
Today, I actually represent the Association for Research in Vision and Ophthalmology, which is an association of 10,000 members of all the leading scientists and clinicians doing ophthalmic work. In turn, ARVO and my foundation are part of the National Alliance of Eye and Vision Research, which is an umbrella organization representing 28 professional lay advocacy and industry organizations dedicated to curing blindness. So we are all in this together.
Thanks to your support over the last 25 years, a solid basis of work funded by the National Eye Institute has put us on the verge of truly spectacular increases and advances in treatments and cures of several major eye diseases.
In the very short amount of time I have, I simply want to tell you three things. First of all, the magnitude of the problem of blindness; secondly, that indeed, we do have a superb, long-range plan. It pinpoints the very best opportunities in curing blinding diseases, as well as addressing the economic and societal impact of blindness and impaired vision. Third, I want to give you just one example of an area where new funding can have a huge impact in the next year or two.
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First of all, what about the magnitude of the problem? In the United States today, with over 1 million legally blind Americans, 80 million Americans have potentially blinding eye diseases, 120 million Americans wear glasses or contact lenses, and a full 12 million suffer from visual impairment that can't be corrected by glasses.
Let me say that I am not wearing glasses, so this is not a normal situation with aging, and I do see that you use yours very sparingly. So this is a disease process that has a major impact.
Mr. PORTER. No, sir, I am wearing contact lenses, with one reading lens. This is additional.
Dr. CHADER. I may be the exception to the rule, but I don't wear glasses, but it is a pathological process. It is not normal with aging.
The economic and societal impact of these figures is staggering. The annual cost of these disorders is in excess of $38 million. Of course, the societal impact, for example, the basic quality of life, that is incalculable, particularly in our fragile aging population, where good vision is a necessity for independent living, and certainly for self-dignity.
The second question, do we have a plan, certainly. On this issue, I would like you to very closely examine the Eye Institute's national plan for the years 1999 through 2003. This is the 7th such plan that the Eye Institute has put together where all the stakeholders in the eye community have input. I have looked at it twice already and given my best shot as such. Basic scientists, clinicians, and all researchers have a word in this. The answer to this question then is a resounding yes. We certainly do have a plan. It is cogent, practical, practicable, and definitely will deliver a huge payoff in the next few years if properly funded.
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Finally, I would like to give you one example of a major blinding condition where we do and perhaps can have a morning impact. That is with macular degeneration. MD, macular degeneration, is a disease that destroys a person's central vision by killing off what is called the macular region of the neural retina.
If you put a fist up close to your eye and then try to look out the periphery, that is what patients see or don't see with macular degeneration. Then slowly the rest of the eye goes as well. The total number of Americans with macular degeneration runs into the millions, and fully one-third of all Americans over the age of 75 show some signs of macular degeneration.
This is a problem now of epidemic proportion as our population ages and as our baby-boomers mature. Statistics show that macular degeneration does increase 100-fold from the age of the early sixties through 80 to 84. The latter, I am sure we all wish to get into that group sooner or later, and don't wish to be blind.
Working myself in this area of research for 24 years, I know for a fact that new scientific information gained just this last year brings us very close to treatments and cures. We now know that macular degeneration is found in family clusters, therefore probably making this a genetic disease. Six months ago we hardly even thought about that. Then we have a new major gene that has recently been found, and we have certain other areas of gene therapy, medical, pharmaceutical, and alternative therapies, where we can apply them.
In conclusion, the magnitude of this problem, and of cataracts, which I have not even talked about, and of the 3 million people with glaucoma, predicates that there are really wonderful advances that we are on the verge of. We have genes for many of these diseases now, for gene therapy and other types of therapies. We do hope, and we very much support, a 15 percent increase in the overall NIH budget, and certainly the National Eye Institute's budget.
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I would like to stop here then and ask if you have any questions. Thank you.
[The prepared statement of Gerald Chader follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Chader, as I said earlier, we don't consider these things in a vacuum. You pointed out that I have had poor vision for a long time. My wife's mother has retinitis pigmentosa, so we have another vision problem, though it is not as prevalent as the ones you have mentioned, and it is something—she is in effect legally blind. So I understand, I think, the importance of these research dollars, and have understood from the testimony of the National Eye Institute that real progress is being made, and more progress is possible if we can get the research dollars to support it.
Dr. CHADER. Absolutely. My foundation is called the Foundation Fighting Blindness, but 2 to 3 years ago it changed its name from the National Retinitis Pigmentosa Foundation to embrace and encompass all of the retinal degenerations, the millions now, with macular as well as the hundreds of thousands with retinitis pigmentosa.
As its chief scientific officer, I have a canned talk as such, which I won't deliver, I will spare you that, but basically there are three major areas of research, where not only can we possibly stop and halt retinitis pigmentosa and all the macular degenerations, but actually reverse the process, perhaps for your mother-in-law, through implants, through retinal transplantation of photo receptor cells and all.
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So we hope to not only stop the progress of these diseases, young, middle-age, but also reverse the disease process as well. If you have further questions in the future, I will be very happy to talk with you about that.
Mr. PORTER. Thank you so much, Dr. Chader. We appreciate your testimony this afternoon.
Wednesday, January 28, 1998.
WITNESS
DONALD M. PORETZ, M.D., INFECTIOUS DISEASES SOCIETY OF AMERICA
Mr. PORTER. Donald M. Poretz, Chair of the Public Policy Committee of the Infectious Dieseases Society of America, testifying on behalf of the society.
Dr. Poretz.
Dr. PORETZ. Mr. Chairman and members of the subcommittee, I am Dr. Donald Poretz. I currently serve as chair of the Public Policy Committee of the Infectious Disease Society of America. Infectious disease physicians do care for patients with serious infections such as AIDS, meningitis, heart valve infections, bone and joint infections, and so on.
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Thank you for allowing us to testify today regarding fiscal year 1999 funding for the National Institute of Allergy and Infectious Diseases and the Centers for Disease Control and Prevention.
Infectious diseases are the leading cause of death worldwide and the third leading cause of death in the United States. An investment of such sufficient dollars in these valuable programs now will pay significant dividends in the future to the American people by dramatically reducing health care costs and improving the quality of life for millions.
We urge the subcommittee to continue to demonstrate leadership and foresight in this area by appropriating much-needed funding increases in these programs for the coming fiscal year, in recognition of the lives and dollars that ultimately will be saved.
Overall, the Society wishes to stress the importance of basic and clinical research conducted by NIH and NIAID in the area of infectious diseases, as well as the enormous contribution to prevention of infectious diseases by the CDC.
It is, of course, impossible to cite every contribution of these two stellar agencies in the diagnosis, treatment, prevention, and control of infectious diseases, but let me give a few examples.
Emerging infectious diseases, as the media attests, new and dangerous infectious diseases continue to challenge us. These examples include hantavirus, Ebola virus, Lyme disease, reemergent tuberculosis, other drug-resistent infections, particularly in hospital, and the recent outbreak of H5N1 avian influenza virus in Hong Kong.
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The Society supports continued incremental increases in funding for the CDC action plan that emphasizes improved disease detection and response for emerging infectious diseases, and supports the new infectious diseases laboratory building at the CDC.
AIDS research. As you know, the NIAID is making great headway in AIDS research by supporting research in the use of combination drug therapies that appear to control the disease better. In the United States, AIDS deaths dropped 23 percent, from 1995 to 1996 and new AIDS drugs declined by 6 percent, due in part to the use of potent antiretroviral drugs.
As an aside, I am in private practice in northern Virginia. My practice has seen over 1600 HIV patients in the last 12 years. We used to run 10 or 12 patients in the hospital at any given time. We now may have one patient in the hospital because of these new therapies. They have indeed been dramatic.
Increased funding is necessary to continue this progress. Vaccine research and development. Immunization is one of the most cost-effective interventions in the health care field. For every $1 spent on immunization, as much as $29 can be saved in direct and indirect costs. Recent scientific advances have enabled the development of new vaccines and significant improvements in the efficacy and safety of existing vaccines.
Increased funding will enable NIAID and the CDC to develop and deliver new and safer vaccines for many other serious infections, including AIDS, sexually transmitted diseases, streptococcal disease, tubercular infections, and so on. In particular, we urge consideration for special short-term grants for possible development of an AIDS vaccine.
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In addition, one of the most desperately needed vaccines is for malaria, especially since drug resistent strains of the parasite are spreading. Again, even in my practice we see several cases of malaria a year. In the Washington area people travel all over the world and bring back all sorts of disease.
STD research, prevention and treatment. A recent Institute of Medicine report notes that of the top 10 most frequently reported diseases of the United States, of these, 5 are sexually transmitted. Approximately 12 million new cases of STDs occur annually. The U.S. has the highest reported rate of curable STDs in the developed world.
The cost of ignoring STD treatment is enormous, estimated by the Institute of Medicine report to be about $10 billion a year. Moreover, curable STDs when left untreated continue to increase spread of HIV, and lead to sterility and infertility. Again, in my practice, you would be amazed at the number of young people, high school age and college age, who come for various sorts of infectious, various types of sexually transmitted diseases.
Training and career grants, the biomedical discoveries being made today had their origins in the basic biomedical research training conducted in the past. Continued progress and leadership in combatting infectious diseases are directly related to the ability to train and retain new investigators in the field.
This subcommittee is well aware of the fiscal challenges confronted by academic health centers. More than ever before, rigorous support of training grants and research and career development awards are essential to ensure the continuation of basic biomedical research necessary to yield a bounty of knowledge to be capitalized on tomorrow.
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The Infectious Disease Society of America very much appreciates the opportunity to testify regarding the importance of adequate appropriations for research, prevention, and treatment of AIDS and other infectious diseases. I would be glad to answer any questions if you have any.
[The prepared statement of Dr. Donald Poretz follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Poretz, we appreciate your statement. When we first were required to make very significant cuts in the overall spending of the subcommittee in 1995 in order to help balance the budget, there were only 10 line items out of about 800 where we were able to give increases. One, of course, was NIH. The other was CDC. So I think the subcommittee puts the entire subject of infectious diseases through public programs and through research at a very high priority, and we will do our very best to continue that commitment.
We understand how important it is, and your testimony reminds us that it is very, very important work that affects so many lives, not only in our own country but around the world, that we have to provide that kind of support. We will do our best to do that.
Dr. PORETZ. Thank you very much.
Mr. PORTER. Thank you very much for testifying.
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
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Wednesday, January 28, 1998.
WITNESS
ORA PESCOVITZ, M.D., PUBLIC POLICY COUNCIL
Mr. PORTER. Laura Pescovitz, M.D., professor of pediatrics, physiology, physiology/biophysics, director of pediatric endocrinology and diabetology. Did I get through that? Indiana University, testifying on behalf of the Public Policy Council.
Dr. PESCOVITZ. You did it.
Mr. PORTER. Welcome, Dr. Pescovitz.
Dr. PESCOVITZ. Thank you very much, Mr. Porter. I really appreciate the opportunity to present testimony today on behalf of the pediatric research community.
As you have already acknowledged, my name is Ora Pescovitz. In addition to being all those things that you have mentioned, I am also a member of the Scientific Advisory Committee of the Ad Hoc Group for Medical Research Funding.
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I am here today representing the public affairs coordinating body for the three major pediatric academic societies and research societies. Our organizations represent thousands of pediatric investigators whose collective goal is to improve the quality of life for all of America's children.
On behalf of these organizations, and as an investigator myself, I am here today to speak about the importance of research funding for pediatrics, and also for the training of pediatric investigators.
Why should we fund pediatric research? Although infants and children are leading healthier lives today, there are still many pediatric diseases that do not have a cure or for which treatment is inadequate. Modern therapy for relatively common diseases like cystic fibrosis or juvenile onset diabetes is cumbersome, costly, and stressful for children and their families.
Although it is obvious that we want to improve the health of children for their own sake, it may be less obvious that improvements in pediatric medicine will have far-reaching implications on the societal and economic costs of adult diseases. Let me just mention one example of how a strengthened investment in pediatrics can benefit adults as well as children.
Osteoporosis is a crippling bone disease that occurs most commonly in post-menopausal women. The morbidity and costs from osteoporosis are not incurred during childhood. Nonetheless, this disorder can really be considered a pediatric condition. This is because all of us deposit bone minerals throughout childhood, adolescence, and early adulthood. In fact, by the age of 30, we have each achieved our peak bone mass. After that, bone mass declines throughout the rest of adult life.
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Therefore, deficiencies in bone mass in childhood will predispose individuals to osteoporosis in adulthood. If we could improve acquisition of bone mineral during childhood, we might actually be able to prevent many forms of adult osteoporosis.
Why should we fund pediatric investigators? As mentioned earlier today by Dr. Kelly, there is a growing concern among our academic colleagues that there is a looming crisis for the future of research in academic institutions and pediatric research in particular. Most pediatric research is performed at the Nation's medical schools, children's hospitals, and in the intramural programs of the NIH.
As the focus of academic health centers shifts away from the traditional roles of research, teaching, and patient care to one which is predominantly patient care, we are concerned that the quality of training of future generations of pediatric medical scientists may be impaired, and this in turn could jeopardize the future health of our entire population.
Now, what can we do to promote pediatric research, and also to preserve the training of pediatric investigators? The entire pediatric community applauds the ongoing commitment of Congress, through the leadership of this committee in particular, to increase NIH funding. We support all of the recommendations of the Ad Hoc Group for Medical Research Funding, but in particular, we would like to recognize your committee's pivotal role in making pediatric research a priority at the highest levels of the NIH by establishing a pediatric research initiative that is currently funded at $38.5 million. We encourage you to maintain this commitment and to increase the funding for the pediatric research initiative to $50 million in 1999.
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My written testimony reflects just a few examples of the many ways that we believe these dollars should and can be used. Furthermore, we urge you to increase funding for training programs that will attract minority group students into the medical professions and encourage medical students to pursue careers in clinical and basic investigation. We want these programs to support young investigators and also we believe that they will enhance the quality of our mentors.
In conclusion, as a pediatrician and as a researcher, I know firsthand that there are many important pediatric research opportunities that promise significant return on investment, not only improved health for children today, but also economic productivity tomorrow as our children grow into adulthood.
Thank you for the opportunity to discuss the importance of pediatric research, and I would be delighted to answer any questions.
[The prepared statement of Ora Hirsch Pescovitz follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Pescovitz, we very much appreciate your testimony in this morning's panel as well. I have to say that you and a number of other witnesses this morning have all mentioned the need to attract, to train, to encourage young investigators in respect to biomedical research, and we want to work very closely with you to try to continue to provide the resources that in fact do attract young people to scientific careers. That, I think, is a very, very high priority for the entire enterprise, so we appreciate your testimony this morning. Pediatric research is obviously of great significance, and we will continue to try to provide the kind of resources that can make a difference.
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Dr. PESCOVITZ. We greatly appreciate that.
Mr. PORTER. Thank you all for testifying. You all stayed within your time limits very, very well. We appreciate that. We stand in recess until 2 p.m.
Afternoon Session
Wednesday, January 28, 1998.
WITNESSES
DR. LORNE M. MENDELL, SOCIETY FOR NEUROSCIENCE
FRANKIE TRULL
Mr. PORTER. The subcommittee will come to order. This is our second session of public witnesses, and as we begin the hearing, I want to remind witnesses of two provisions in the Rules of the House. In addition to their written statement, nongovernmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds that they or the entity they represent have received.
If you have any questions concerning the applicability of this provision or questions as to how to comply, please contact our subcommittee staff.
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In order to accommodate as many members of the public as possible, we have scheduled over 20 witnesses for each session and are still not able to hear from all who wanted to testify. Overall, we will hear from over 200 witnesses in this segment alone. As a result, I have to enforce the rule limiting testimony to 5 minutes very strictly.
Our subcommittee staff has a new device to time witnesses. We will time them, and we will do everything possible to stay within the time limit, and I would therefore ask that you keep this limitation in mind in consideration of the other witnesses that must follow you.
With that, we begin with Dr. Lorne M. Mendell, President of the Society for Neuroscience and professor of the Department of Neurobiology and Behavioral Sciences at the State University of New York at Stony Brook, testifying on behalf of the Society for Neuroscience.
Dr. Mendell.
Dr. MENDELL. Thank you, Mr. Chairman. My name is Dr. Lorne Mendell and this is my colleague, Frankie Trull. I am the President of the Society for Neuroscience and professor at the Department of Neurobiology and Behavioral Sciences at the State University of New York at Stony Brook. I am testifying on behalf of the Society for Neuroscience, the largest scientific organization in the world dedicated to the study of the brain and spinal cord, consisting of more than 28,000 basic and clinical neuroscience researchers.
Mr. Chairman, we are very grateful for this opportunity to give our testimony, and I want to express our gratitude to this subcommittee and especially to you, Mr. Chairman, for the high priority that you have placed on continued funding for biomedical research at NIH. We were especially pleased, Mr. Chairman, by your comments late last year about providing a significant increase for NIH for fiscal year 1999.
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We fully support the goal of doubling the budget of NIH over the next 5 years, as has been advocated by many in the Congress.
The field of neuroscience, only a quarter of a century old, has become well known to the general public through its major contributions to the welfare of our Nation of citizens. New insights and effective treatments have been developed for previously hopeless diseases. For example, current basic research has allowed us to understand mechanisms of pain so that various remedies are being developed for people who suffer from chronic pain due to disorders of skin, nerve and joints.
Without adequate funding, our fight against neurological diseases and disorders such as Alzheimer's, Parkinson's, mental retardation, stroke, severe depression, schizophrenia and spinal cord injury, to name just a few, would suffer a serious setback.
As researchers, patient advocacy groups and Members of Congress work together, the Nation will become more familiar with the progress that is occurring in our laboratories and will recognize that funding is still needed to expand upon what we already know. If we can double the budget of NIH, we can change some of these sad, but all too familiar, stories into medical success stories.
Brain diseases affect more than 50 million Americans annually at costs exceeding $400 billion in direct costs for clinical care and in lost productivity. The more than 1,000 disorders of the brain and nervous system result in more hospitalizations than any other disease group. The prevalence of brain disorders in the United States, together with high annual costs for treatment, combine to make these conditions the number one public health problem now confronting the Nation.
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Apart from improving the quality of our citizens' lives, the research conducted at NIH is highly cost effective. The estimated annual economic costs of neurological disease is staggering—for example, stroke at $40 billion, Alzheimer's at $90 billion and all mental disorders at $148 billion. My written testimony includes more examples.
NIH is working on an economic analysis to be available in the near future that highlights even more areas of cost savings.
We at the Society for Neuroscience realize the difficulty in finding money for biomedical research. However, results from basic neuroscience research are on the threshold of leading to important scientific breakthroughs in a number of brain diseases. To lose this momentum now would be detrimental to the health of the Nation. We feel that it is vital that the necessary funds are appropriated to continue to achieve the tremendous advances and breakthroughs that are within our reach. It is our hope that funding for all biomedical research will be increased as discoveries of one Institute carry over to work being done by other Institutes at NIH.
The main goal is to increase funding overall so that further progress can be made in the hopes of ending these debilitating disorders and diseases. It is for these reasons that I have mentioned, and many others that you will hear in the days to come, that we recommend a 15 percent increase over fiscal year 1998 for NIH and support the proposal for the Ad Hoc Group for Medical Research Funding.
Our recommendation is a first step towards doubling the NIH budget over the next 5 years. We recognize the difficulty in achieving this goal under current spending limits and encourage the Congress to explore all possible options to identify the additional resources needed to support this increase.
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In conclusion, Mr. Chairman, the Society for Neuroscience is grateful for this opportunity to present testimony to this distinguished subcommittee; and at this time, I will be pleased to answer any questions the Chairman or members may have.
Thank you again, Mr. Chairman, for your continued support.
[The prepared statement of Lorne M. Mendell follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Mendell, thank you for your good statement. Because you are our first witness of the afternoon session, you get my sermonette. My sermonette goes this way.
If we have any hope of getting the kind of increase for funding for biomedical research or for other priorities within the jurisdiction of the subcommittee, we must have an allocation from the budget process that allows us those resources. The only way we achieve that is having impact on the budget process and achieving the levels indicated.
The President, in his State of the Union address last night, proposed to ramp up spending for basic research, not just biomedical research, but all basic research, and he was talking about a 50 percent increase over 5 years instead of 100 percent increase and his budget to provide spending—discretionary spending in any area has about $100 billion of new revenues involved, all of which, in my judgment, are highly problematical given the proclivity of the Congress not to want to raise taxes of any type, even tobacco taxes, which I favor.
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So in the sense of this being a priority for the subcommittee, I think there is no question that it is, but the subcommittee needs help in the budget process in getting the resources we need to do what you are asking us to do. And so for everybody in this room who is interested in the programs before this subcommittee, not only biomedical research but all of them, that is where help is needed. That is where the message has to first be sent, and we can't do anything unless we have the resources to do it.
That is my sermonette. Thank you for listening. Thank you all for listening.
Dr. MENDELL. All right. Thank you.
Wednesday, January 28, 1998.
WITNESS
RONALD NIESING, NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT ASSOCIATIONS, INC.
Mr. PORTER. Our next witness is Ronald Niesing, President of the National Council of Social Security Management Associations, Inc. Mr. Niesing.
Mr. NIESING. Thank you, Chairman Porter, for the opportunity to present the views of the managers and supervisors who work in SSA's community-based field offices and teleservice centers across the country. Today, I will talk about the solvency issue facing Social Security, staffing in our offices, efforts to eliminate program fraud and abuse, and the delivery of services to our constituents.
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The mission of SSA is ''To promote the economic security of the Nation's people through compassionate and vigilant leadership in shaping and managing America's Social Security programs.'' The 3,200 managers and supervisors I represent want to share with you our vision, gained through experience working with the public every day, for managing the Social Security programs that now benefit millions of Americans.
The Nation is beginning a new debate about the future of Social Security. An agency goal is to ''strengthen the understanding of the Social Security programs.'' An informed public is crucial for this debate to reach a successful conclusion. All Americans should feel that they have a role in the financial planning for their futures.
Our members work with community leaders and organizations. We hear the questions and concerns expressed by your constituents. We are respected and involved members of our communities, and serve as a ready conduit for a public information campaign on solvency.
You, as a committee, need to ensure that sufficient tools and resources are in place for us to deliver the appropriate information.
SSA now faces a long-term crisis in management. Arbitrary goals have been established to reduce frontline managers and supervisors. This will crimp our ability to effectively discuss the future of Social Security in town halls, in classrooms, with local media, and with community civic groups.
Like politics, all education is local. More people will hear the message on Social Security reform from local sources rather than from the national media.
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The Advisory Board has urged SSA to provide leadership on retirement planning, to work with employers and employees, and to strengthen the staff and promote the understanding of Social Security. These recommendations cannot be met while arbitrarily reducing managers and supervisors. In appropriating funding for SSA, we urge you to keep the upcoming solvency debate in mind.
SSA's strategic plan calls for the delivery of customer- responsive, world-class service. Our first aim is to deliver the best possible service to your constituents. Yet, less than half of the 65,000 employees who work for SSA are serving on the front lines in the 1,300 field offices and teleservice centers. We need to move more employees to direct service positions, to help process new claims, handle requests for Social Security numbers, combat fraud and abuse, and work with employers to ensure proper use of Social Security numbers.
Despite these needs, future agency staffing will cut 3,000 more field office employees, the people who serve your constituents. As appropriators, we urge you to keep those needs in mind as you deliberate the budget for SSA. I know that Social Security issues are the number one cause of constituent contacts. Will the public be getting the best value for its tax dollar by cutting 3,000 more employees from local offices while leaving current staff in place in large headquarters complexes and processing centers?
SSA has a goal of ''zero tolerance for fraud.'' This will be more difficult to achieve as we cut management and staff positions. At a minimum, we must keep all of the employees we now have in place in the field. If SSA is to avoid situations like the Georgia family, where 181 members were receiving SSI benefits, we need to increase our community contacts and work with medical providers.
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All of you have received letters and calls from constituents regarding lengthy delays in waiting for disability decisions. SSA is moving to modernize the disability process. We support these efforts and would like to see greater accountability from the Office of Hearings and Appeals in reducing processing times and increasing the number of completed hearings.
The agency is meeting the commitments made to you and to this committee on its 800 number telephone service. However, SSA does not offer the same service to the public who call local offices. Almost all managers feel their offices are giving poor service to the calling public. This is the number one complaint heard in your offices. We urge you to appropriate sufficient funds to allow the agency to provide world-class telephone service to those who choose to call their local offices.
The issues I have outlined are important to the American people. It is vital that SSA have the resources to provide services that Americans have paid for, deserve, and expect.
Thank you again, Chairman Porter, for the opportunity to testify at this time, and I would be happy to answer any questions.
[The prepared statement of Ron Neising follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. In the course of your testimony, Mr. Niesing, you said, if I am correct, that less than half of the employees of Social Security have public contact.
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Mr. NIESING. That is correct. About 28,000 out of the 65,000 actually work in the offices that are in our communities across the country.
Mr. PORTER. Can you tell me what the rest do, generally?
Mr. NIESING. Many of them work in our headquarters complex, in our processing centers. They are located in seven sites across the country.
Mr. PORTER. Data processing?
Mr. NIESING. Right.
Mr. PORTER. Okay. Well, we appreciate very much your testimony today. Obviously, this is a very important subject. It is the place probably where more of our citizens contact government than any other, and obviously we want to do the best we possibly can and give you the resources you need to do your work. Thank you for your statement.
Mr. NIESING. Thank you
Wednesday, January 28, 1998.
WITNESS
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BRUCE M. CHRISTENSEN, AMERICAN SOCIETY OF TROPICAL MEDICINE AND HYGIENE
Mr. PORTER. Bruce M. Christensen, M.D., Chairman Legislative Task Force, representing the American Society of Tropical Medicine and Hygiene.
Dr. Christensen.
Dr. CHRISTENSEN. Thank you.
Mr. Chairman and members of the committee, I am Director of the Tropical Disease Research team at the University of Wisconsin, and I am appearing on behalf of the American Society of Tropical Medicine and Hygiene. This is a professional society composed of 3,500 researchers and medical practitioners who are devoted to addressing the global threat of infectious diseases. A strong U.S. research agenda on infectious diseases is critical at this time when the ease of travel and openness of trade exposes the world's population to new and reemerging infectious disease agents.
Mr. Chairman, we thank you for your strong support for this agenda and your continuing commitment to provide funding that will sustain our research infrastructure in the years to come.
You have my written testimony. What I want to try to do is highlight a few of the things that we feel are the most important concerns.
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From fiscal year 1993 through 1998 the National Institutes of Allergy and Infectious Diseases received 40 percent funding increases for their extramural programs, but the research management and support budget increased by only a tenth of 1 percent. Our society is concerned that we are not providing the Institute with the resources necessary to manage our important infectious disease research programs.
We are not arguing for large increases, but merely calling for responsible stewardship of the extramural programs and grants to ensure that we are effectively meeting the appropriate goals and objectives.
The Society also applauds Dr. Varmus and Dr. Fauci for their leadership at home and abroad in advancing the multilateral initiative on malaria and for implementing the Institute's research plan for malaria vaccine development. Malaria has reemerged as one of the world's most serious diseases, causing approximately 500 million clinical cases and 2 to 3 million deaths each year. The tragic thing is that the majority of the deaths occur in African children under the age of 5.
Malaria is a complex disease and its control will require significant research effort. We are pleased that NIH recognizes this and is willing to commit significant resources towards solving the problem, and we urge the committee to be supportive as well.
Two Institute programs have been critical in advancing our understanding of tropical diseases, and our Society urges the committee to not only continue these programs but to increase support for these important projects. They are, first, the International Collaborations in Infectious Disease Research grant program that supports collaborative research between U.S. investigators and foreign institutions in countries where these tropical diseases are endemic; and secondly, the Tropical Disease Research Unit is a domestic grant program that promotes the application of modern technologies to the development of new vaccines, drug therapies or methods for vector control of tropical parasitic diseases.
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The Society also appreciates the committee's support for funding increases in fiscal year 1999 for the CDC's emerging and reemerging infectious disease program. We strongly encourage the committee to support CDC's infrastructure, which include the need for new bio containment laboratories in Atlanta.
The real need for this is illustrated by the recent outbreak of avian influenza in Hong Kong, when CDC laboratories actually had to reduce research on certain pathogens to make room for this new pathogen. Space limitations that require the cessation of research activity of one pathogen to make room for another is a dangerous situation that must be addressed immediately.
As the 20th century comes to a close, I think we must remember that infectious disease agents have no respect for political or geographic boundaries, and social or economic status do little to ensure safety from new diseases or those reemerging as a consequence of drug resistance or other causes.
I spend some of my time working with lymphatic filariasis in village populations on the Nile Delta, and many other members of our Society work in the tropics where the vast majority of the world population resides.
Mr. Chairman, if we turn our backs on the health threats to the growing majority of people living in the poorly sanitized areas of this planet, I truly fear an erosion of this Nation's humanity and world leadership. I trust you share these concerns, and I want to emphasize again that we sincerely appreciate your past support of these activities and urge you to continue your efforts to double the NIH budget over the next 5 years.
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Towards this end, we obviously, as every other group here, will probably recommend a 15 percent increase in the NIH budget for fiscal year 1999. We also request that the committee provide a $15 million increase for the CDC's emerging infectious disease activities.
I thank you for this opportunity to talk to you.
[The prepared statement of Bruce Christensen follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Christensen, just one short question.
You said that you coordinate your efforts or work directly with institutions of countries in the tropics where these diseases are most prevalent.
Mr. CHRISTENSEN. That is the one program project grant.
Mr. PORTER. Which would be a leading country to have that kind of research institution, Brazil?
Mr. CHRISTENSEN. Well, there are projects that in the past and presently go on in Brazil, in Thailand, in Kenya, in Sudan, in Malawi, in Mali.
Mr. PORTER. But do they have research institutions like ours?
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Mr. CHRISTENSEN. Yes, they do.
Mr. PORTER. In those countries?
Mr. CHRISTENSEN. I would not say they are ''like ours,'' and that is where there is a collaboration between U.S. institutions and these institutions. It benefits both ways, because it brings technology to them in new ways of looking at things, but it gives the U.S. scientists a real appreciation for the problems that are at hand there. That is why they are so critical, especially when diseases now are sort of flying around the globe at a pretty rapid rate.
Mr. PORTER. Thank you very much for your good testimony.
Wednesday, January 28, 1998.
WITNESSES
ALISON RUMERY-RHODES
JUDITH S. JACOBSON, SUDDEN INFANT DEATH SYNDROME ALLIANCE
Mr. PORTER. Alison Rumery-Rhodes, Sudden Infant Death parent, testifying in behalf of Sudden Infant Death Syndrome Alliance.
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Mrs. RUMERY-RHODES. Mr. Chairman and members of the subcommittee, my name is Alison Rhodes, and this is my husband, Kenny.
Until August of 1997, my husband, Kenny, and I felt we lived a charmed life. In a matter of a few hours, our lives and our innocence were destroyed. On April 12, 1997, I gave birth to a beautiful boy named Connor Andrew Rhodes. Nothing compared with the sheer ecstacy of holding my newborn son. Kenny and I felt our lives were complete.
After 10 weeks, I returned to work and carefully selected a small day care facility that was run by a family. There was never a day I worried about the care he was receiving.
Tuesday, August 5, started out like any other day. One of the images that is the most vivid and unforgettable is Connor sitting in his carrier and smiling as I kissed him good-bye.
My morning was busy, as usual. After coming out of a meeting, my phone rang. It was Jenny from day care saying the words I will never forget, ''There is a problem with the baby. He is not breathing.''
After that, I remember hearing myself screaming, ''Oh, my God.'' As I raced to the hospital, I was already making deals with God, ''Take me; just save my baby.''
I can't imagine the hell my husband went through that morning as he reached day care. He saw the paramedics trying to revive Connor. He felt powerless and unable to protect his son. Kenny knew, even then, that Connor was gone.
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When I reached the hospital, I believed I was going to find Connor alive. Then I heard the words that haunt me still, ''He is with God now.'' I heard myself screaming louder than I ever knew possible.
They took us to see our precious angel, who seemed to be peacefully sleeping, and I begged him, ''Just please open your eyes, sweetheart,'' but he never did.
The next day, we learned that an insensitive social worker had the day care family interrogated at police headquarters and threatened to shut down the facility. I immediately called them, offering my support and assurances that I didn't hold them responsible. The community, however, was not as forgiving.
Mr. Chairman, while a standardized Death Scene Investigation Protocol for SIDS was created by the Centers for Disease Control and Prevention, it is not implemented consistently. I urge the committee to ask every State to implement this policy. It would help to end this type of harassment of the grieving.
Our pediatrician told us that Connor's death was most likely due to SIDS. It had never occurred to me that we would be one of its one-in-a-thousand victims. Little did I know that most SIDS babies, like Connor, appear to be perfectly healthy.
We soon decided that we wanted to learn as much about this disease as we could and help find a cure. We were put in contact with the SIDS Alliance, who I am speaking on behalf of today. They helped us immensely and taught us many things.
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One infant an hour dies of SIDS. It is neither preventable nor predictable. It is the leading cause of death amongst infants one month to one year of age, and certain risk factors have now been identified.
The U.S. ''Back to Sleep'' campaign led by the National Institute of Child Health and Human Development has resulted in a 38 percent decrease in SIDS, the highest reduction in infant mortality in 20 years. But this is not the only answer, and further funding is still needed to understand SIDS and discover a means of prevention.
While nothing will take away the grief and emptiness my husband and I feel, we have made a commitment to do everything we can to save children at risk. Connor will not die in vain. We are expecting our next child in July, and while this will be a joyous occasion, it will never ease the pain we live with every day.
On behalf of Connor and all other SIDS babies, I urge you to increase the fiscal year 1999 appropriation for the National Institute of Child Health and Human Development to $775,980,900, an increase of 15 percent; and a down payment on doubling the NIH budget. A 15 percent increase would allow NICHD to begin to fulfill the goal of doubling SIDS research over the same period of time.
We also urge this subcommittee to continue funding for the SIDS Resource Center at the Health Resources and Service Administration and the SIDS Death Scene Protocol Initiative at the Centers for Disease Control.
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I thank you for your time and support and welcome any questions.
[The prepared statement of Alison Rumery-Rhodes follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mrs. Rhodes, what was the recent development that I have read about and that you alluded to that had to do with SIDS, and it looked like there was some real progress being made?
Mrs. RUMERY-RHODES. There is definitely real progress being made. However, it is not the only answer. One of the risk factors is considered prone sleeping, but Connor is a perfect example, he was on his back and he still died.
Yes, there is a tremendous amount going on, but we see the end.
Mr. PORTER. I read in the last few weeks somewhere that there was something else that had been identified as a prime suspect at least in SIDS.
Mrs. RUMERY-RHODES. I am not aware of it. I don't know.
Mr. PORTER. But I could be wrong.
Mrs. RUMERY-RHODES. Judy probably knows.
Ms. JACOBSON. I am Judy Jacobson. I am with the SIDS Alliance.
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There have been all sorts of risk factors that have been identified from time to time. The most recent study, coming out of New Zealand this morning, showed something about caffeine being linked with an increased risk for SIDS.
We know that cigarette smoke obviously is something that has a definite impact. In addition to the sleeping on their stomachs, the other recommendation that we do make is that infants be kept in a smoke-free environment, that parents get good prenatal care and that all of the things that would impact a pregnancy, whether they be caffeine, nicotine or any type of drug or alcohol abuse would certainly be something we would discourage.
Mr. PORTER. It might have been caffeine that I saw, and I must have seen it this morning.
Ms. JACOBSON. It just came out.
Mrs. RUMERY-RHODES. It was this morning.
Mr. PORTER. I recall reading something recently. That must have been it.
I wish I could say something that would give you comfort in this. The only thing I can really say is that Dr. Alexander places this at a huge priority, as you know, and so do we, and we will do everything we can to get him the resources that he needs to find the breakthrough that will end this, and we will do our best.
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Mrs. RUMERY-RHODES. Thank you very much.
Wednesday, January 28, 1998.
WITNESS
WALLACE E. ZEDDUN, UNITED DISTRIBUTION COMPANIES
Mr. PORTER. Wallace E. Zeddun, vice president, Wisconsin Gas Company, representing the United Distribution Companies.
Mr. ZEDDUN. Mr. Chairman, thank you very much for the opportunity to testify. I represent the United Distribution Companies today, a coalition of Northeast and Midwest local distribution utilities; a list of which is attached to my testimony. Those companies and my own have a very strong commitment to seeing that the energy needs of the disadvantaged in this country are being met.
What we are requesting for fiscal year 1999 for the Labor-HHS appropriations bill is a return to the funding levels of $1.319 billion, to provide for advanced appropriations of $1.319 billion for fiscal year 2000, and to eliminate the setaside for the leveraging incentive program.
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We believe that this is appropriate for the following reasons in my prepared testimony but three of which I would like to highlight. One, the need still exists; two, this is a key program to support welfare reform; and, three, it is also a foundation program to allow low-income customers to reap the benefits of deregulation in the future.
Starting with the first one, the need still exists. The Center on Budget and Policy Priorities, in a recent report using current census data, indicated that the average income for the poorest 20 percent of families in this country actually fell 1.8 percent from the time period 1989 through 1996. The poverty rate in 1996 was 13.7 percent as compared to 13.1 percent in 1989. Now, that is also a much larger population base, so it compounds.
The percent of families having children and elderly who live in poverty is roughly the same in 1996 as it was in 1989. During this same time frame, energy prices have increased moderately. However, on the other hand, this program has been cut over 30 percent during this same time frame. When you combine income stagnation for the impoverished along with increasing energy prices and a significant decrease in energy assistance, the inescapable conclusion is that the energy burden is as great now as it was in 1989, if not greater.
My second point, welfare reform. Energy assistance was one of those programs designed not to be solely a welfare program. It was designed to be a supplemental assistance program for the working poor. That is essentially what is happening with welfare reform.
We all agree with the laudable goals of trying to get as many people working as possible. What we find in our community, as far as welfare reform, is that the citizens who are engaged in the program are being employed at average wages ranging from $6.59 to $7.56. This means they still qualify for this program. On the other hand, they lose their access to food stamps, and that is being borne out by Catholic Social Services. They are seeing a doubling, many more people coming to their food kitchens who are participating in welfare reform, and they also lose access to Medicare.
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These families need to rebuild their credit histories; they need to rebuild their work histories.
If we remove the supplement, energy, which is one of their largest burdens, it may very well be the crushing death that does not allow them to rebuild their credit histories and thus have no chance to participate in the future to get higher paying jobs as they rebuild their work history. For that reason, I submit that this should be viewed as a bridge program for people who are in welfare reform.
Deregulation: My business—our industry is being deregulated. My company will be a transporter essentially under deregulation. Private companies, nonregulated, will sell the gas molecules. I think you only need to ask a few questions to see the impact.
If you are a private company, who are you going to be competing for, somebody who lives in the suburbs where the ability to pay is high, or a business or somebody in the central city, where you have a high uncollectable problem? Which customer class will get the best terms, the best conditions, the best prices? Which customer classes have the most clout, the most influence?
This is a foundation. Without this foundation, the poor will not be able to afford to pay their energy bills. They will not be able to participate in receiving the most favorable benefits under deregulation.
For this reason, I urge the committee to support energy assistance as it has a key role in supporting welfare reform and in making sure that the deregulation benefits go to all families. I thank you very much for your consideration.
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[The prepared statement of Wallace E. Zeddun follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Zeddun, I think that is probably the best case that can be made for it.
How do you answer critics, like myself, who say this is a Federal program that was instituted at the time of the Arab oil embargo, the second Arab oil embargo, when fuel prices were very high and today fuel prices in real terms are lower than they were then? And if this isn't a Federal program that ought to be terminated because the reason for its existence has disappeared, what is?
Let me say, I recognize the need. There are people out there that are in need, there is no question about it. But is this the way to address it on a program whose rationale, in my judgment, has disappeared long ago?
Mr. ZEDDUN. I think if you focus only on energy prices, you would have to give serious consideration to it. But you have to look at the other side of the equation, which is the spending power of the families.
If you go back and if you do the work and look at the statistics, the burden that families have when this program was created is largely unchanged, because their incomes haven't kept up. Energy prices have gone up, and have moderated since 1989, but the incomes of the poor haven't kept pace with inflation, so the burden has gone down. It has remained roughly the same so the need is still there.
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As with any poverty program, the broader you spread it, the less it costs all citizens of this country.
Mr. PORTER. Well, the problem of poverty and welfare existed before this program. Somehow, the energy companies were mandated, probably by the States, not to cut off supplies of energy to customers during times that would threaten their health, whether it is extreme cold or extreme heat.
There are those who see this simply as a program that helps utilities handle their otherwise bad debts and not a program that should be addressed through this way, it should be addressed through welfare, through direct payments to families. What do you say to that? I am not going to get you into a long debate on this.
Mr. ZEDDUN. Right. I think to recognize we have bad debts, but they are not our bad debts, they are customer bad debts. And go back again, because the moratorium does not relieve the obligation to pay, it only says we cannot disconnect. It doesn't say that the customer doesn't owe the money.
That means without the supplement, the debt load gets higher. Bankruptcies, as we all know, are escalating at a rapid pace and becoming a very endemic problem in this society. So I think if you look at the broad impact, that is where this becomes a very important program.
Mr. PORTER. That is not our job, but I think the authorizing committee ought to relook at this program entirely, target it better, change the nature of the program, and not continue it in its present form. But that is simply where you and I differ.
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To me, it is kind of an example of how you start a program and it goes on forever. We have had great difficulty in addressing, I think, priorities, because obviously the program has a need and it has a strong constituency and it probably will go on. But I would like to see it go on at least in a form that has a greater rationale for the real problem that it addresses, and that is the problem of poverty and not high energy costs.
Mr. ZEDDUN. It is really a combination of the two. I mean, that probably is the biggest change the program has made in the last several years, is that as opposed to just looking at it from a poverty perspective, because there are people who are low-income who can afford to pay all of their bills. I mean, let's not make the assumption that every low-income family needs this program. That is not true. There are people who live in very substandard housing with very high energy bills and have very low incomes, and that is the targeting that has really happened over the last several years to make this program more effective, and it had to because of the cuts.
I mean, in the past when it was funded much higher, initially it was run more like a welfare program. It is now being run based on trying to determine which households really have the greatest need for the program.
Mr. PORTER. Well, to be continued.
Mr. ZEDDUN. Yes.
Mr. PORTER. Thank you for your testimony.
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Wednesday, January 28, 1998.
WITNESSES
ALAN BROWNSTEIN, AMERICAN LIVER FOUNDATION
DEBBIE DELGADO-VEGA
Mr. PORTER. Alan Brownstein, president of the American Liver Foundation, testifying on behalf of the Foundation.
Mr. BROWNSTEIN. Good afternoon.
Mr. PORTER. Good afternoon.
Mr. BROWNSTEIN. Mr. Chairman and members of the subcommittee, my name is Alan Brownstein, and I am the president of the American Liver Foundation. I am joined here today by Debbie Delgado-Vega who is the president and founder of the Latino Organization for Liver Awareness.
I want to thank you for giving us this opportunity to testify.
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First, we must thank you for your past leadership in support of biomedical research overall and specifically for liver disease. This year, unlike previous years, thanks to the work of this committee, I have some important progress to report. This progress will help benefit the research community in helping to fight liver disease, because there are now two historic documents that have been produced.
First, we have the Hepatitis Consensus Development Conference that was sponsored by NIH last March that has made significant recommendations as to the appropriate research and public health response needed for hepatitis C.
As the committee knows, hepatitis C has been classified as an emerging infectious disease, and the death rate from the disease each year is now at 10,000 and will more than triple by the year 2010 unless there are significant interventions that occur.
The second document and one that was requested by this subcommittee presents the collective wisdom of 13 NIH Institutes on the research necessary to meet the challenges of liver disease. This, in fact, is the first ever research agenda to fight hepatitis and other liver diseases, which is near completion and will be submitted to this committee in the very near future. We thank Dr. Gordon and Dr. Hoofnagle at NIDDK for their leadership in producing this document.
We hope the subcommittee will consider these two documents as you fix your appropriations for this year.
However, in addition to research, education of the public, patients, and physicians is essential to prevent hepatitis and other liver diseases, and while national leadership is needed, what is more important is the grass-roots efforts that provide people with the health information that they need to know to help prevent diseases. ALF has chapters to do this throughout the country. We have also formed an alliance with the American Digestive Health Foundation and we will be convening a national summit here in Washington on February 24th, where we will be bringing together national organizations and local organizations from all over the country to address hepatitis and to provide that education that is needed.
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A model of one of those grass-roots organizations is the Latino Organization for Liver Awareness. We have Debbie Delgado-Vega with us today, who herself has received a liver transplant. A concrete example of how these organizations can work is that organ donor awareness—and we know how badly that is needed—that the consent rate among Hispanics in New York City was 30 percent in 1993.
LOLA, Latino Organization for Liver Awareness, was formed in 1994, and over the 3 years since LOLA has existed, that consent rate has gone up to 59 percent, a 29 percent increase. So, therefore, that is a concrete example of how grass-roots organizations can work.
Now it gives me pleasure to introduce Debbie Delgado-Vega to share a little bit more about that.
Ms. VEGA. Thank you, Mr. Chairman, for giving us the opportunity for being here. Again, I would just like to repeat, my name is Debbie Delgado-Vega and I am the founder and chairperson of the Latino Organization for Liver Awareness—we like to call it LOLA—in New York City. I am also a liver transplant recipient.
Back in April of 1992, at the age of 29, I was diagnosed with border immune hepatitis, an incurable liver disease. My liver had generated into a mass of scar tissue. My only antibodies were attacking my liver, as it was foreign. My only chance for survival was a liver transplant.
All I knew about hepatitis was that it was something contagious and that cirrhosis was alcohol related. My ignorance embarrassed me. In fact, my liver disease was not contagious, it was generic. My life stopped, but only for a minute.
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Devastated but not beaten, I went on a mission in search of information about my illness, and I learned that there were about 100 different liver diseases and that an estimated 60,000 people await organ donation in the Nation. I realized that information and support for the Hispanics suffering from liver disease and those in need of a transplant was needed. This led me to take action, and I created LOLA, the Latino Organization for Liver Awareness, the first organization of its kind in the country. That was in 1994, one full year before my own transplant, before my own miracle of life.
Since then, LOLA has touched many and saved many lives of Latinos who otherwise would have not received the proper treatment or care. What brings people like LOLA and the American Liver Foundation together is our love of life and the community. And together we can transform our individual struggles into a collective movement to fight for life.
Thank you.
Mr. PORTER. Thank you both for testifying. We certainly share your concerns and will do everything we can to provide the kind of funding that makes a difference.
Thank you.
Mr. BROWNSTEIN. Thank you very much, Mr. Chairman.
Ms. VEGA. Thank you, Mr. Chairman.
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[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
[The prepared statements of Alan Brownstein and Debbie Delgado-Vega follow:]
"The Official Committee record contains additional material here."
Wednesday, January 28, 1998.
WITNESS
VINCENT J. BUFALINO, M.D., AMERICAN HEART ASSOCIATION
Mr. PORTER. Vincent J. Bufalino, M.D., director of cardiology at the Edward Cardiovascular Institute and president of the Midwest Heart Specialists, testifying on behalf of the American Heart Association.
Dr. Bufalino.
Dr. BUFALINO. Thank you, Mr. Chairman.
I am a practicing cardiologist in suburban Chicago and a member of the National Board of the American Heart Association. I am here today to talk to you about heart attacks, strokes, and other cardiovascular diseases, still America's number one killer, the leading cause of disability in our country.
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Cardiovascular disease accounts for nearly one of every two deaths in the United States. Chances are, heart attack, or stroke, will be the death or disabler of you or someone you love.
The American Heart Association commends your championship of the NIH and the CDC, but we are concerned that insufficient resources are being devoted to research and prevention of this, America's number one killer, heart disease, the number three killer, stroke, and it is clearly the most disabling.
Now is the time to capitalize on the progress in understanding heart attack and stroke. Promising, cost-effective breakthroughs are on the horizon. These initiatives will reduce health care costs and improve quality of life for all Americans.
We urge you to take three steps for fiscal year 1999. Appropriate a 15 percent increase over current funding for the NIH, the first step toward doubling the budget in 5 years. This goal is echoed by Research America, as you know, and the Ad Hoc Group for Medical Research Funding.
Secondly, provide a 15 percent increase over fiscal year 1998 funding, specifically for NIH heart research and stroke research. And thirdly, appropriate $21 million for CDC's Cardiovascular Health Program.
Thanks to the advances in treatment and progress and learning about risk factors, more Americans are surviving heart attack and stroke. No longer do heart attack or stroke necessarily mean immediate death. But now they can mean permanent disability, requiring costly medical care, loss of productivity, and, of course, decreased quality of life. We still have much to do.
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Heart and stroke researchers are on the brink of advances that could pave the way to the cure or least prevention, but these studies need more funding. Research has produced the first effective emergency treatment for stroke. The clot-buster drug T–PA can stop a stroke in progress and reduce permanent disability when used within 3 hours.
T–PA could be a miracle drug. It could benefit an estimated 450,000 Americans at risk of a clot-causing stroke each year. But, again, this is not happening. Too often, people do not recognize stroke symptoms, patients are not getting to the hospital on time, and many health care providers don't treat stroke as an emergency.
Moreover, patients would benefit from improving imaging capabilities so that we could make the diagnosis quickly in emergency settings.
In order for T–PA to live up to its full potential and find new ways to fight stroke, funds must be invested in cutting-edge research. Heart attacks and half of all strokes are the result of arteriosclerosis. This is the disease process that obstructs blood vessels. New theories about the origins of arteriosclerosis are emerging. One is inflammation of a blood vessel wall; another, a common viral infection; a third, the presence of an inherited defective gene.
Imagine taking an antibiotic or a vaccine and preventing a heart attack or a stroke. More funds are needed now, because these studies may revolutionize the way we prevent or treat a heart attack or a stroke. Results could help prevent the estimated 1,000,000 heart attacks and over 600,000 strokes that Americans suffer from each year in this country.
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You probably know someone who suffers from congestive heart failure, the most common cause of hospitalization for those over 65 in America. This disabling condition is growing because, thanks to research, more and more people are living longer, but with damaged hearts, only to be inevitably limited by congestive heart failure.
Congestive heart failure is a horrible disease. For many, relatively simple tasks like making a bed or preparing breakfast can be so fatiguing that they need to spend the rest of the day in bed. Some must rely on constant daily oxygen. A heart transplant may be the only way to curtail their suffering or postpone death for some patients, but, as we know, donors are quite scarce.
Funds to study promising areas, including removal of nonfunctioning heart muscle, new electronic devices to drive the heart, could mean a new lease on life for the 5 million Americans who suffer from congestive heart failure.
Most people do not associate children with heart disease. Heart defects are the most common birth defects, 23,000 each year, a key cause of childhood disability, and in fact over 20,000 will die before their first birthday.
Scientists often do not know why these defects occur. But questions are being answered through the work of the Specialized Centers for Research of Pediatric Cardiovascular Diseases known as SCORES. Resources to renew these SCORES will allow continued progress in the fight against these conditions that can severely restrict quality for life of newborns, children, grandchildren.
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Research results must find their way into the communities where heart attack and stroke inflict their damage. The CDC works to build that bridge from the lab to the community. The strength of that bridge has been enhanced by the creation of the CDC Cardiovascular Health Program. Thanks to your help, beginning this year, as many as 5 States will receive funds to begin this comprehensive disease prevention and control program.
We advocate an appropriation of $21 million to continue to reach out to States on heart disease and stroke prevention. Increasing resources for both research and community intervention will allow us to take great strides against heart attack, stroke, and other cardiovascular diseases. This could mean the difference between life or death for many of us or someone we love.
Thank you, Mr. Chairman.
[The statement of Vincent J. Bufalino, M.D. follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Bufalino, I do know someone who had congestive heart disease, and that was my mother, who died of congestive heart failure. So I am very familiar with the condition.
You said something that I didn't quite understand, and you said that often health care providers don't treat stroke as an emergency. Is that what you said?
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Dr. BUFALINO. I did. It is interesting; stroke has been thought of as a permanent disabling disease; when it happened, there was really nothing that could be done. Once it had occurred, it was complete; much like heart attacks were 15 years ago when we really didn't have much to offer folks. They would come in, we would put them in intensive care and then we would wait for the complications.
Stroke was very similar. This new onset of new therapies where we can actually go in, dissolve a clot and actually return full function to a paralyzed arm or leg, so that information is clearly new, a part of the educational process that needs to be done for emergency physicians, neurologists, and anyone else who is taking care of stroke patients.
Mr. PORTER. So that education process isn't necessarily complete at this point in time?
Dr. BUFALINO. Absolutely not. It is something that we are actually in the middle of tackling now. The American Heart Association is actually taking the lead to send these kinds of information out to practitioners across the country, in rural areas, where these drugs can be easily administered.
Mr. PORTER. Well, thank you very much for your testimony. It is good to see a fellow Illinoisan here. And I learned a lot listening to you.
Dr. BUFALINO. Thank you, sir. Thank you for your time.
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Wednesday, January 28, 1998.
WITNESS
C. MICHAEL SAVAGE, SINAI FAMILY HEALTH SERVICES
Mr. PORTER. C. Michael Savage, Chief Executive Officer, Sinai Family Health Services, testifying in their behalf.
Dr. SAVAGE. Thank you, Mr. Chairman, for providing Sinai Family with the opportunity to present testimony before your subcommittee this afternoon. I feel a little bit like a fish out of water. I am a health care provider, not a researcher, so I am going to speak to those issues.
As the Chief Executive of Sinai Family Health Centers, we are the largest network of community health centers in the Chicago area. We were born out of Sinai Hospital in the 1980s, and it was awarded federally qualified health center status in 1991. We currently have 23 sites, and we have approximately 170,000 visits a year by about 60,000 patients.
As you are probably well aware, the 1990 census figures show that seven out of ten of the poorest communities in this country are in Chicago. We have facilities in five of those communities, serving the indigent, the unemployed, and the working poor, regardless of their ability to pay.
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Sinai Family's vision for the health future of its patients is focused on a plan to develop a system of urban community health care. In order to maintain this commitment, we continually reassess and respond to the rapidly changing health care environment. As you know, over 41 million Americans today are uninsured, the largest amount since the enactment of Medicare and Medicaid. Community health centers fill a critical void by providing care to over 10 million of those persons.
In Cook County, Medicaid rolls have decreased by 60,000 in the last 2 years. While this is good news—and much of it due to a rapidly improving economy, as well as changes in the welfare and immigration laws—there is also a down side. The vast majority of those 60,000 individuals, primarily women, and children are now also uninsured, even though their parents work.
Similarly, with increased enrollment of Medicaid patients in managed care, community health centers throughout the country are receiving decreased reimbursements for serving managed care patients.
Even though Sinai Family has reengineered its service delivery systems and cut encounter costs by 22 percent, we, like other community health centers, are being squeezed financially by reduced levels of reimbursement and increased numbers of uninsured persons.
For these reasons, Sinai Family is pleased that the National Association of Community Health Centers is working with Congress and the administration to secure a $100 million increase in the Consolidated Health Center Program to serve 350,000 more uninsured persons.
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Sinai Family has also been pleased to be given a recent opportunity to work on reducing infant mortality rates and low birthweight rates on Chicago's Westside through a Healthy Start grant. Nineteen out of every 1,000 babies born in Chicago's Westside die during their first year of life. Through this Bureau of Maternal and Child Health Healthy Start grant, we will be able to reduce this shockingly high rate of infant mortality and low birthweight rates through the implementation of proven community health practices.
We have also developed a number of programs to respond to other health care needs of low-income residents in Chicago's poorest neighborhoods. A more detailed description is in my written testimony, which has been submitted, but three I want to mention briefly.
Senior citizens, even though they are insured with Medicare, we are finding, are having tremendous health problems in the inner city. That is not only a combination of aging but also poverty and fear of crime, which limits people's ability to both access and stay attached to primary health care.
In the last 4 months, through a senior outreach program, we have linked 400 seniors with chronic health care problems to ongoing primary health care. I would encourage you to ask the Administration on Aging to develop some evaluation programs looking at these linkage types of programs.
Likewise, the CDC should continue its work to control the spread of HIV and other sexually transmitted disease. There is now strong evidence that the presence of other STDs increases the likelihood of both transmitting and acquiring HIV and that, conversely, early identification and treatment of STDs can slow the spread of HIV.
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Lastly, despite overall lower rates of breast and cervical cancer among African-American women, we are seeing all sorts of research that shows that they have a higher mortality rate because their illness is diagnosed later in their disease. Sinai would welcome the opportunity to work with the CDC to expand early screening and treatment programs to address their specific needs.
Mr. Chairman, I would like to thank you for your past support for the community health center program and for the opportunity to present testimony this afternoon. I would be happy to answer any questions on health centers in your hometown.
[The prepared statement of C. Michael Savage follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. My hometown? Chicago isn't quite my hometown, but it is close.
Mr. SAVAGE. The Chicago metropolitan area, how is that?
Mr. PORTER. You mentioned that the Sinai Family Health centers are in the process of developing a system of urban community health care. Can you expand on that a little bit?
Mr. SAVAGE. As you probably are well aware, in more middle-class or affluent communities, you have a primary health care infrastructure. You have private physicians, you have group medical practices, you have staff-modeled HMOs. In most poor urban communities and in many rural communities, that infrastructure doesn't exist outside of community health centers and hospital emergency rooms. Private practices have essentially left those communities, if they have ever been there.
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So I think the community health center program is central to putting primary care infrastructure into communities. I think that is why NACHC's request is so important, because if that infrastructure is not there, there is no way to deliver health care in a cost-effective manner and also in a continuous manner.
But even with that infrastructure, I really believe that there have to be other programs like some of the ones that I have mentioned that target particularly vulnerable groups of individuals or particular diseases in order to keep people successfully attached. So that is what I am trying to speak to.
Mr. PORTER. Mr. Savage, thank you very much for your good statement. We will also do our best in respect to your concerns.
Wednesday, January 28, 1998.
WITNESS
THOMAS M. BRUCKMAN, UROLOGIC RESEARCH AND CARE COALITION
Mr. PORTER. Thomas Bruckman, Executive Director and CEO of the American Foundation for Urologic Disease, testifying on behalf of the Urologic Research and Care Coalition.
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Mr. BRUCKMAN. Good afternoon, Mr. Chairman, and thank you.
I am Tom Bruckman, CEO of the AFUD, and also Director of Public Policy of the National Prostate Cancer Coalition. I am here today speaking on behalf of the Urologic Research and Care Coalition, and we would like to begin by thanking you for your support of biomedical research at NIH and throughout the government.
However, Mr. Chairman, despite the efforts of Congress to fund urologic research, the program continues to fall behind other areas at NIH. While Congress approved a 7.5 percent increase last year, the NIDDK within the Institute chose to limit urology to 3.5 percent instead of the 7.5 percent. The growth of spending for urology at NIH was among the lowest of all categories; only research into lead poisoning received a smaller increase. We understand the NIH recently committed to increase urology funding at the same rate as the overall funding rates, and we appreciate that, but it is a little bit behind at this point.
Mr. Chairman, the number of Americans who suffer from urologic diseases and conditions is staggering. The NIH estimates that every year over 8 million people suffer from acute urinary conditions, such as urinary tract infections. Over 4 million people experience bladder disorders. Approximately 13 million adults suffer from incontinence. Interstitial cystitis affects nearly 500,000 people. More than 2 million men will experience prostate disease, the most diseased organ in the human body, like BPH or prostatitis. Over 200,000 new cases of prostate cancer were diagnosed and over 40,000 men died last year.
Thousands of people are diagnosed with kidney, bladder, and testicular cancers. Approximately 15 to 20 million men over 40 suffer from impotence. The estimated economic impact of urologic diseases and conditions exceeds $50 billion a year. For fiscal 1999, the Coalition recognized an overall increase in urologic research funding of 9 percent.
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We also recommend the subcommittee take steps to address the disparity of funding for prostate cancer research, specifically. The NCI should be able to commit at least 100 million for research for fiscal year 1999. The URCC also recommends that the subcommittee direct the NCI to put research funding on breast and prostate cancer into equilibrium as quickly as possible. Almost 50 percent of all cancers in the human body occur in the urologic tract.
The Coalition believes that the disparity in urologic research funding is due in large part to the lack of focus for urology research at NIH and within the Federal Government generally. Traditionally, grant applications in urology have been sent to as many as nine Institutes at NIH, with possible review by 20 study sections.
The NIH has finally responded to some of these concerns by creating a special emphasis panel to review urologic research grant applications. The panel is designed to ensure that appropriate urological expertise is available for grant review, but it is just being set up, and it is a long time in coming. Just yesterday, the NIH expressed its willingness to work effectively on this particular issue. We ask the subcommittee to make sure that they continue this effort.
The problem caused by having nine institutes in the mix is compounded by the addition of other Federal agencies, such as the VA, the CDC, and the DOD now funding some portion of urological research. In order to maximize the effectiveness of all of these efforts, a strong steering committee needs to be in place. The present coordinating council does not have the budget or the authority to be effective.
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The Coalition recommends three steps to improve the structural problems facing federally funded urologic research: Number one, focus urologic research in fewer Institutes; review the number of study sections reviewing urologic applications; strengthen the role of the interagency council in urology by giving a budget and clear authority to coordinate federally funded urologic research activity.
The subcommittee called last year on the NIDDK to develop a urologic disease database, something we presently don't have. We urge the committee to make sure that the NIDDK continues its efforts to complete this work soon.
Lastly, let me mention URCC's concern that the NIDDK has just scratched the surface on activities relating to women's urologic health programs.
Mr. Chairman, that completes my testimony. My entire testimony is available in written format.
[The prepared statement of Thomas Bruckman follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Bruckman, you are right on time. You are, I am sure, aware that this particular subcommittee has a great concern about prostate cancer. We lost two of our prominent Members, George O'Brien and Sil Conte, to prostate cancer.
Mr. BRUCKMAN. Yes, sir.
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Mr. PORTER. I think we have made it a priority.
You also know that we don't fund by disease, we fund by Institute. When you find yourself spread among a lot of Institutes, it is hard to——
Mr. BRUCKMAN. It is part of the uncoordinated factor.
Mr. PORTER. It is what you were talking about.
Mr. BRUCKMAN. Yes, sir.
Mr. PORTER. We certainly do place urological research at a high priority, and we do, I think, send clear messages to NIH of our feelings in that regard. So we will do our best to respond to these needs. I think they are real and, overall, the decisions on where scientific opportunities lay has to be with science and not with this subcommittee, obviously.
On the other hand, I think the suggestions you have made about strengthening the panels and making certain that the peer review process works fairly in respect to diseases like prostate cancer and other urological ailments is a very real problem that I think NIH is attempting to address. We will keep our eye on it.
Mr. BRUCKMAN. Thank you, sir, we appreciate your support. That is very encouraging. Thank you.
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Wednesday, January 28, 1998.
WITNESS
STANLEY B. PECK, AMERICAN DENTAL HYGIENISTS' ASSOCIATION
Mr. PORTER. Stanley V. Peck, Executive Director, American Dental Hygienists' Association, testifying on behalf of the Association.
Mr. Peck, nice to see you again.
Mr. PECK. Nice to see you, sir.
Mr. Chairman, on behalf of the American Dental Hygienists' Association, I want to thank you for the opportunity to testify regarding fiscal year 1999 appropriations for the Department of Health and Human Services and, in particular, the National Institute of Dental Research.
As you know, I am Stan Peck, ADHA's Executive Director. ADHA is headquartered in Chicago. It is the largest national organization representing the professional interests of the approximately 100,000 dental hygienists across the country.
Dental hygienists are preventive oral health professionals who are licensed in each of the 50 States. Dental hygienists are committed to improving the Nation's oral health, a fundamental part of total health. Despite recent advances, oral diseases are still among the Nation's most chronic health problems. The Institute of Medicine estimates that 50 percent of Americans do not receive regular oral health care. Clearly, the Nation's oral health must be further improved, and history shows that research at the National Institute of Dental Research has yielded significant oral health advancements.
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Fifty years ago Members of Congress decided to create the National Institute of Dental Research within NIH. This decision has proven to be a wise investment, indeed. NIDR's work in dental research has not only resulted in better oral health for the Nation, it has also helped curb diseases and oral health care costs. Americans save nearly $4 billion annually in dental bills because of advances in dental research and an increased emphasis on preventive health care.
Continued research at NIDR is critical to the future of oral disease prevention and oral health promotion. ADHA strongly endorses NIDR's strategic plan, which calls for expanded research in health promotion, additional public health education efforts, and an increased focus on important oral cancer research.
Since more Americans are lost each year to oral cancer than to cervical cancer or Hodgkin's disease, NIDR research to reduce the morbidity and mortality associated with oral cancer is critical. Dental hygienists, too, play a role in the battle against oral cancer by routinely examining each of their patients for signs of oral cancer. To enable NIDR to continue and to build upon its important research mission, ADHA joins with other dental groups to recommend $240 million for NIDR.
ADHA wishes to take this opportunity to commend this subcommittee and all Members of Congress on passage of the historic State Children's Health Insurance Program, which was part of the Balanced Budget Act of 1997, and which will extend health insurance to as many uninsured low-income children as possible. ADHA worked hard to promote the inclusion of oral health in the children's health initiative, and ADHA is now working with the States to encourage the strongest possible oral health component in State Children's Health Insurance plans. Inclusion of oral health benefit plans is important because preventable oral disease is the single most common childhood disease.
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One approach to improving children's health is to include dental sealants and fluorides in any definition of childhood immunizations. While research to develop a vaccine against tooth decay continues, we can effectively today guard against tooth decay, which is an infectious, transmissible disease, with the combined use of dental sealants and fluorides. Dental sealants and fluorides protect children against tooth decay just as vaccines immunize against certain medical diseases.
ADHA also lends its support to the Division of Oral Health within CDC. Specifically, ADHA urges a budget of $6 million for the Division of Oral Health. This funding level will enable the Division of Oral Health to continue its vital work to control and prevent oral diseases, including its important work in the area of water fluoridation.
ADHA joins the Allied Health Roundtable in supporting Title VII of the Public Health Service Act and recommends full funding for Allied Health Project Grants and Allied Health Advanced Training.
Allied health disciplines constitute fully 60 percent of the health care workforce. With the acknowledged need for cost-effective health care providers, now is the time to augment funding for and recognition of these important allied health programs.
ADHA also urges enactment of comprehensive tobacco settlement legislation, and urges that smoking and spit tobacco prevention programs be funded in that legislation. As preventive oral health specialists, dental hygienists know full well the value of prevention. Cigarette and smokeless tobacco use creates serious and preventable public health problems.
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With regard to the Department of Labor, ADHA believes OSHA has an important role to play in promoting employee safety, and ADHA urges the subcommittee to appropriate monies such that OSHA will be able to improve employee safety in the workplace, including the dental hygiene workplace.
In closing, the members of the ADHA appreciate the important contributions of this subcommittee, and those that have been made in improving the quality and availability of oral health services. ADHA is committed to working with you and all Members of Congress to improve the Nation's oral health, a vital part of total health.
Thank you for this opportunity to submit the views of the American Dental Hygienists' Association.
[The prepared statement of Stanley B. Peck follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Peck, we appreciate your again coming before the subcommittee to represent the dental hygienists.
Your offices are in Chicago?
Mr. PECK. Yes.
Mr. PORTER. Do you live in the Chicago region?
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Mr. PECK. Yes, I do, on Wabash.
Mr. PORTER. Wabash. You are not a native Chicagoan?
Mr. PECK. No, I am not. You could tell from my accent.
Mr. PORTER. Where do you come from?
Mr. PECK. I am a native New Yorker. Lived in Washington for 12 years and lived in Chicago for nearly 5.
Mr. PORTER. I would have guessed all that.
Thank you for coming to appear again. We appreciate your testimony. The subcommittee will stand in recess for 3 minutes.
Mr. PECK. Thank you, sir.
[Recess.]
—————
Wednesday, January 28, 1998.
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WITNESS
HARRY TETER, AMERICAN TRAUMA SOCIETY
Mr. PORTER. The subcommittee will come to order.
The next witness is Harry Teter, Director of the American Trauma Society, representing the Society.
Mr. Teter.
Mr. TETER. Mr. Chairman, I am very pleased to be here today to represent the Members of the American Trauma Society on several issues that we find extremely important. I am very pleased. I have a statement here that I will put in the record, if I may just make a few comments on the side.
I would, of course, like to be here today and be testifying on behalf of the Institute for Trauma, but we don't have an Institute yet. We have a lot of work that is being done in other areas, and specifically, some that I would like to draw attention to today—the National Center for Injury Prevention and Control at CDC; of course, the good work done at other agencies of HHS; the Emergency Medical Services for Children; and others that are doing good research work in trauma.
There are two things that bring me here today. The Trauma Society is very concerned with proper care for trauma patients, and we are also very concerned that there be good, effective injury prevention programs available.
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The statistics on injury are staggering. I am sure they have been presented here before; they are in my testimony as well. But injury is a major cause of health care problems. It is a high-ranking public health care issue and one that we all must be concerned with. In the trauma business we see it all too frequently, every day. We see injuries that could have been avoided, could have been prevented, and we hope that in the future that will happen with good programs and good education. There is no denying the fact that we must have good care. To that end, I want to applaud the research that is being done and encourage more research to be done in the area of trauma care, acute care.
There is one area in particular that I hope we can address in the future. That is measuring the true value of trauma systems. We know they save money; we know they save lives. But daily, that is questioned, as we look at—because they are very highly—they use a lot of resources, and managed care, et cetera, wants to say, well, did they really need all this care? Did they really need all these resources?
We know they do. They are saying, well, prove it. We would like to set out to do that, but we would like to have an objective person or organization really examine the outcomes of trauma in the trauma center and the trauma system versus a nontrauma system.
These systems, as I say, we know save lives. We must continue to build them across the country.
Actually, we would like to see that nobody even gets into the trauma system at all. Therefore, I want to applaud the work being done by the National Center for Injury Prevention and Control at CDC. I think in the short time they have been in existence they have a remarkable story to tell of excellent research they are doing.
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One thinks immediately of the good work being done on helmet use, on smoke alerts, smoke detectors, et cetera. But there is far more that is being done there. I hope that I will be able to, in the next month, present a real overview to you of all of the research that the various centers are doing.
The CDC group there funds research, as you know, both at the Center, and they fund programs of research in 10 injury control centers across the country. The stories, as I say, are quite interesting, because we really look at all types of injuries, both in the young and the old; and, too, I don't know if we can consider ourselves in between, but I would like to think so. But at any rate, they are looking at these injuries very carefully, and how they can be prevented.
But most importantly, too, is once we know the prevention and what works, we have to get the word out there. That is another function that the Centers for Disease Control's Injury Prevention Program is doing, and needs to continue to do.
So today, I would strongly urge the committee to give increased funding to the Center for research and for the education programs that they are doing, and the work they are doing in what they call Safe America. It is a truly worthy cause.
I would like to also say that the work that is being done at the Emergency Medical Services for Children is extremely valuable for childhood injuries, and we applaud that work and also hope that that will receive increased funding.
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One program that I think should be looked at, and that is the Emergency Medical Services—well, the block grant, Preventive Health and Health Care Block Grant at CDC. Years ago we had a specific categorical program on Emergency Medical Services. It was a superb program that unfortunately got put into a block grant. It is being given short attention these days, and I hope that we can eventually see that program moved out, possibly going into the Center for Injury Prevention.
At any rate, thank you for your time here today, and I will be glad to answer any questions.
[The prepared statement of Harry Teter follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Teter, how much trauma is accidental, as opposed to intentional?
Mr. TETER. Mr. Chairman, I truly cannot answer that question, because I would take a guess that it is probably about 60/40, 60 unintentional, 40 intentional. The highway trauma that comes from car crashes I would lump as unintentional. One might say that drunk driving, et cetera, is not unintentional. But if we do the car crashes, which are roughly about 50 percent of the trauma we see, we certainly see trauma in the workplace. We see trauma at home that is unintentional, and injuries. It may be even 70/30.
Mr. PORTER. Thank you very much for your testimony this afternoon. We appreciate it.
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Wednesday, January 28, 1998.
WITNESS
BRUCE M. CARLSON, Ph.D., M.D., AMERICAN ASSOCIATION OF ANATOMISTS
Mr. PORTER. Bruce M. Carlson, Ph.D., M.D., President, American Association of Anatomists, Professor and Chairman, Department of Anatomy and Cell Biology at the University of Michigan Medical Center, Ann Arbor, Michigan, testifying on behalf of the American Association of Anatomists.
Dr. CARLSON. Thank you very much for the opportunity to testify. As you mentioned, I am testifying as President of the American Association of Anatomists. This association is a professional organization consisting of somewhat over 2,500 members who conduct research on the structure and function of the human body. Our members are conducting the research in virtually all major universities, medical schools, and government laboratories. In addition, anatomists teach a good share of the first-year medical curriculum.
Thanks to the continuing support of the Congress, at least in my opinion, the American biomedical research establishment probably has no equal anywhere else in the world. I have had the personal privilege of being able to continue extensive research in a number of countries, including the Soviet Union, Czechoslovakia, Finland and The Netherlands. In the former Eastern Bloc, research is typically conducted from the top down in terms of planning, and research was conducted in institutes separated from the universities. In my experience, in all of the countries I have been in, I have encountered very good research, but in no country has the environment for basic research been as conducive to progress as that we have in our country.
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The investigator-initiated research in our own universities is very important because of the stimulus we get from students and trainees who really provide energy to the research process; and also from the intellectual drive that stems from investigators who are working on projects in which they have an intense personal interest. I strongly believe that the unique entrepreneurial spirit of basic biomedical research in this country is the engine that drives much of our productivity.
The American Association of Anatomists supports the recommendations of the consensus conference of FASEB for the fiscal year 1999 budget of the NIH, and specific points are in my written testimony. I will not reiterate them here.
At present, biomedical science, as you well know, is progressing at an absolutely unprecedented rate. As a writer of embryology textbooks, I am continually amazed and frankly overwhelmed by the amount of new information that has come out in the last 8 or 10 years. About 4 years ago now, I had published a new text in medical embryology. Within 6 weeks of publication significant parts of the book were completely out of date because of major new research findings.
Just last week, a colleague of mine at the University of Michigan was lecturing to the freshman medical students on development of the brain and spinal cord. Fully three-quarters of her lecture consisted of information that we did not know 4 years ago.
My own current laboratory research has moved from studies of embryonic development to studies of aging and, in particular, the aging of muscle. I am trying to understand the basis for reduced muscle function and the poor regenerative capacity of muscle as an individual ages. This research has been supported by the National Institute on Aging.
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Other research that is being supported by this same NIH Institute involves the application of guided exercise programs to individuals in their nineties who have very poor mobility. Thanks to some scientific studies that have been conducted on human exercise, individuals who literally had to have assistance to get out of bed or go to the bathroom could now fulfill these functions in an unassisted manner; individuals who could not walk fast enough to get across the street during the course of a normal green light can now walk across the street unassisted.
Despite the generous support of biomedical research, there is still much excellent work that remains to be done. Other projects have suffered lapses in terms of the continuity of funding. Let me stress the importance, number one, of peer review and, number two, the continuity of funding issue. Peer review is very important in our scientific process, not only for deciding who will or will not get research grants, but for maintaining a level of science. We often find that individuals who have excellent research projects, but who have had difficulty with one aspect because of peer review may suffer a 6- to 9-month period where funding is not available. If this shuts down the laboratory, it may be 2 or 3 years before that laboratory is up to full function. Therefore, I think it would be very important to have mechanisms in place for bridge funding for the basic functions of a laboratory that is in this particular interim period.
The maintenance and upgrading of research infrastructure is also very important. To me, infrastructure goes far beyond bricks and mortar, but it refers to scientific capabilities. Examples would be common courses for specialized equipment that would be beyond the reach of an individual laboratory or national center for the care and maintenance of rare breeds of research animals.
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Contemporary biomedical science is evolving at an unprecedented rate. To maintain this momentum, we must continue to bring new brains and energy representing all elements of our population into the national research effort. The American Association of Anatomists appreciates and strongly supports programs for the NIH for training of diverse groups for independent research careers.
Mr. Chairman, we in the biomedical research community recognize and thank you for the generous support that the subcommittee has shown us over the 104th Congress and 105th Congress. The American public and Congress have placed a great responsibility on the biomedical research community to translate this support into improved national health and well-being. We accept this challenge and I hope that the products of our efforts will speak for themselves as advances in science are incorporated into medical products and practices.
Thank you very much.
[The prepared statement of Bruce Carlson, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Carlson, thank you for your good testimony.
I am pleased to see that a professor of my alma mater is president of the association, and we were happy to have you here today and hear what you have to tell us. We have made some important notes that we will follow through on and appreciate your coming to testify.
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Dr. CARLSON. Thank you very much. I appreciate that.
Wednesday, January 28, 1998.
WITNESS
JOSEPH WEISENBURGER, INTERSTATE CONFERENCE OF EMPLOYMENT SECURITY AGENCIES
Mr. PORTER. Joseph Weisenburger, Deputy Commissioner, New Hampshire Department of Employment Security and Interstate Conference of Employment Security Agencies, in behalf of the Conference.
Mr. Weisenburger.
Mr. WEISENBURGER. Thank you. Mr. Chairman. I am here today to testify on behalf of the Interstate Conference of Employment Security Agencies, a national organization of public officials who administer the Nation's unemployment insurance programs, the public employment service, the labor market information programs, and in 41 States, the job training programs, and now a growing number of welfare-to-work programs.
As you know, the employment security system is funded by a dedicated tax paid by employers. While this tax is sufficient to maintain and fund the proper and efficient administration of our programs, because of the focus on the Federal deficit and the inclusion of these trust funds in the calculations of the budget, we have received substantial cuts in our programs which have jeopardized the integrity and effectiveness of those programs. We ask you to begin the process of restoring the appropriations to our very important programs.
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For the public Employment Service, we first ask that you increase the appropriation from its current level of $761 million to $811 million. The justification for that is that several years ago, this Congress began funding the creation and implementation of one-stop career centers. It has now become obvious to the Department of Labor and to the States that the public Employment Service will be the glue that holds these one-stop systems together.
So we urge you, in order to keep the successes that we have already achieved in this one-stop system moving forward, we urge you to fund the Employment Service at this new higher $50 million level as a beginning to—as these one-stop systems start to come together.
For the unemployment insurance program, first we would like to thank you for the special $200 million appropriation you granted to the States so we could deal with the problems of the millennium. While it is a very close time frame, without that funding we certainly would have had serious disruptions in the payment of unemployment benefits.
The unemployment insurance program for the past 62 years, the partnership between the Federal Government and the States, has worked fairly well. The Federal Government, the Department of Labor, that is, funded the States using a formula that took into consideration the workload in each State and the cost of doing business in each State. However, because of the focus on the budget problems, we no longer fund the system in that manner.
As an example, this year the Department of Labor, in trying to determine what the base allocation would be for the States, estimated that the States would need sufficient resources to process 2 million claims a week. The final appropriation only turned out to fund 1.8 million claims a week. That means that currently every week the State employment security agencies are processing 200,000 claims without any Federal general revenue—I am sorry, without any of the dedicated overage amount in taxes.
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We urge you to reconnect the funding of the unemployment insurance system to that workload formula that actually funds the States based upon their actual costs, and provides the services that unemployed workers who lose their jobs through no fault of their own need.
There are several other miscellaneous programs that we run. We ask you, and it is particularly an urgent request for the Alien Labor Certification program—2 years ago the Congress cut the appropriation for this program by 50 percent. That cut, tied with significant workload increases, has caused enormous backlogs at the State level. Employers are furious. It has caused a black eye on the public Employment Service. One State received a bomb threat, others have received other threats of violence. Some States, because of the seriousness of this, are considering discontinuing the administration of this program unless the funds are restored to what we believe is the appropriate level of $50,500,000.
For the Workforce Opportunity Tax Credit, we ask you to continue the funding level at $20 million that we currently have this year.
For our Labor Market Information programs we ask a small increase in that very important program, which is the economic cornerstone to economic development at the State level; and for the information that is necessary at the one-stop career centers, we ask $55 million this year for the cooperative program with the Bureau of Labor Statistics.
Finally, for our veterans' programs, which are seriously underfunded, we ask that the Congress begin a process of funding our disabled veteran representatives and our local veteran representatives to a level that guarantees at least one veterans' representative in each of the one-stop career centers throughout this country.
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Thank you, Mr. Chairman. I would be glad to answer questions.
[The prepared statement of Joseph Weisenburger follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Weisenburger, on the State operations for the unemployment compensation trust funds, staff tells me we level-funded that between fiscal 1997 and 1998.
I thought I had heard you say that you were only able to do 1.8 million out of 2 million operations. Was it underfunded to start with? Because it seems to me in this economy, our unemployment is at an all-time low. I think the President said last night it was at a 27-year low.
Mr. WEISENBURGER. The unemployment rate is low. There is a different between the total unemployment rate and the unemployment insurance program.
Mr. PORTER. I understand, but it should be also tracking pretty comparably, shouldn't it?
Mr. WEISENBURGER. Yes, it is. It is low. Next year actually, we project taking 9.1 million claimants, and that is still a lot of people, even though the unemployment rate is low. But we have been funded based upon our workload. If the workload goes down, our funding goes down and that works, and we respect that process; but the funding has been cut way below those levels that are needed to process even low claims.
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Mr. PORTER. I see. So it was low to begin with?
Mr. WEISENBURGER. Two million low. Actually, we probably take 2.7 million claims every week.
Mr. PORTER. The amount of money that was allocated for fiscal year 1997, you are saying, was inadequate to start with?
Mr. WEISENBURGER. That's correct, based upon the cost of doing business at the State level, they only processed 1.8.
Mr. PORTER. Thank you very much for your testimony.
—————
Wednesday, January 28, 1998.
WITNESS
JOHN SUTTIE, AMERICAN SOCIETY FOR NUTRITIONAL SCIENCES
Mr. PORTER. John Suttie, Ph.D., professor of biochemistry and nutritional sciences, testifying on behalf of the American Society for Nutritional Sciences.
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Dr. Suttie, it is good to see you.
Mr. SUTTIE. It is good to see you.
I am John Suttie, professor of the Department of Biochemistry and Nutritional Sciences at the University of Wisconsin. I have also served as president of the Nutrition Society and recently served as president of the American Society for Experimental Biology.
It is as a representative of the Nutrition Society that I appear before you today in support of the research budget of the National Institutes of Health. Our society is the principal professional organization of nutritional research scientists in the United States. It represents 3,500 members whose purpose is to develop and extend the knowledge and application of nutrition.
Our leaders participated in FASEB's Federal Funding Consensus Conference last month, and we endorsed their recommendation of a 15 percent increase for the fiscal year 1998 NIH budget. This increase would represent an initial step toward the goal of doubling the NIH budget over the next 5 years, a goal which many of your colleagues in the House and Senate have publicly supported. We are also pleased at the recent indications of increased NIH support from the administration.
All citizens should be grateful to this subcommittee for the continued support of the NIH budget during the period of strong competition for limited resources. As the cornerstone of preventive medicine, nutrition is the key to enhancing individual and public health.
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Nutritional research, although multidisciplinary, has one goal: To understand the role of appropriate nutrition in growth, development, quality of life, decreasing disease risk, and treatment of existing disease. Inappropriate nutrition is a primary factor in unattained genetic development, reduced productivity, and increased susceptibility to diseases such as heart disease, cancer, stroke, liver disease, and atherosclerosis. Diseases like these cost our Nation billions of dollars annually in health care and lost productivity.
According to a 1997 report from NIH, the annual cost of illness related to cancer, diabetes, heart disease, and Alzheimer's disease is nearly $450 billion, approximately $203 billion in medical care and $245 billion in lost wages and productivity.
It is important to recognize that optimal nutrition is one of the best means of keeping these health care costs down. Our society advocates that the level of NIH support for nutrition research reflect the important role of diet in health promotion and in the prevention and treatment of disease. Let me share with you a few examples of progress that has been made.
First, it has been found that caloric restriction in diets extends the life-span and health span of primates. Rhesus monkeys subjected to dietary restriction were shown to have less body fat, increased insulin sensitivity, lower fasting glucose levels, improved glucose tolerance, reduced oxygen consumption, and lower weights. Understanding of these nutrient-related biologic responses that bring about these alternatives and alterations will require increased funding for this area of research.
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Second, ongoing studies in transgenic gene ''knockout'' mice show that caloric restriction used as a dietary perturbation has delayed tumor appearance and development and prolonged survival significantly. This finding establishes that dietary manipulation is an effective way to reduce cancer incidence.
Third, research has found that fish, other seafoods, and fish oil contain a class of polyunsaturated fatty acids that may reduce the risk of coronary heart disease. Evidence shows that death due to heart disease is lower among men who consume higher amounts of these fatty acids.
The nutrition community is proud of our past, and our ongoing achievements show great promise. A renewed and long-term national commitment to invest in biomedical research for the continuing benefits of society is essential, and nutrition research will play an important role in this development.
I mention three research areas for funds directed towards nutritional research which will be particularly cost-effective: Aging, cancer, and cardiovascular disease.
Another opportunity is prepared by the success of NIH and other agencies to sequence the human genome. This will not only allow physicians to effectively target drug therapy to individuals but will also open the door to the identification of nutrient requirements of each individual. This area will also require increased funding.
Finally, it is important that we adequately train young scientists who will be able to prepare us for new challenges. Ensuring that the new generation of nutritional scientists will establish the links between nutrients and gene expression are trained to use the latest knowledge and tools developed by molecular and cellular biologists is essential. These training activities will require funding.
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Members of the American Society for Nutritional Science are aware that allocation of resources requires you to make difficult choices. We urge you to continue the support you have provided the NIH in recent years, and we pledge our support in efforts to influence the budget allocation process.
Thank you again for the opportunity to testify.
[The prepared statement of John W. Suttie follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. I was delighted particularly with your last sentence.
Dr. SUTTIE. I think we all recognize that this is essential.
Mr. PORTER. Yes, it is essential, and it will make all the difference in the outcome, so we will do our best. I said this morning, I am not sure I said it this afternoon, but let me say it anyway so we are clear—let me ask you, were you encouraged by what the President had to say last night in the last few sentences of his State of the Union about research?
Dr. SUTTIE. I was encouraged, certainly, that I think we have seen a stronger position from the President than we have seen in recent years. I think that those of us that are actively involved in biomedical research would perhaps like to see a somewhat larger allocation than he is talking about, but I think we see this as a base and a floor to start from. But I think it is encouraging to see us start with a higher level of support.
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Mr. PORTER. I said basically the same thing, Dr. Suttie, that I was encouraged that normally, given the priority at which the subcommittee places biomedical research, that it puts a floor under it, except that a good portion of the increase in spending in the discretionary accounts under his budget will be required to be supported by the revenue increases that he also proposes, including the tobacco settlement.
While I think increased funding from tobacco taxes or related revenues from the tobacco industry are wonderfully justified, I also know that a lot of Members of Congress don't like to increase any kind of revenue sources, and it is problematical that we will get the revenues to support the spending. That will make it much more difficult.
You agree with that, I assume?
Dr. SUTTIE. The money from the tobacco settlement is not there yet, and there is a question how much will be there.
Mr. PORTER. There is a question as to whether this will actually be able to be addressed in this fiscal year because of electoral politics, among other reasons, and also because it is such a huge, difficult, complex subject to resolve. So I think we have to worry about that.
We thank you, Dr. Suttie, for testifying again.
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Wednesday, January 28, 1998.
WITNESS
K. KIMBERLY KENNEY, THE CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME ASSOCIATION
Mr. PORTER. K. Kimberly Kenney, executive director, the Chronic Fatigue and Immune Dysfunction Syndrome.
Ms. Kenney.
Ms. KENNEY. Good afternoon, Mr. Porter. Thank you for the opportunity to appear before the subcommittee today.
My name is Kimberly Kenney. I am executive director of the CFIDS Association of America.
Mr. PORTER. I am sorry we don't have the word ''Association'' in here. I assumed it was missing for some reason, but it was just left out. I apologize.
Ms. KENNEY. Our association is the world's largest and most active charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome, CFIDS.
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As you know, Mr. Chairman, CFIDS is a serious and complex disease characterized by incapacitating fatigue, persistent flu-like symptoms, intractable pain, and Alzheimer-like cognitive deficits. The cause has not yet been identified, and there is no cure or effective treatment.
CDC estimates that half a million American adults and children suffer from strictly defined CFIDS. This committee, with your personal support, Chairman Porter, has provided leadership and vision through the Federal agencies which must meet the needs of persons with CFIDS.
As I have been honored to do for each of the last 3 years, I come before you today to report that progress is being made in the understanding of CFIDS, but I also point out certain critical areas where there are problems.
Many important signs of progress are outlined in my written testimony, and I wish to highlight just one, what I consider to be the most significant event of 1997, a public-private partnership to educate health care workers about CFIDS.
This medical education program was produced by the Office of the Assistant Secretary for Health with collaboration from many Federal agencies and patient representatives. It was conceptualized and written by a team of patient advocates and staff from HHS, NIH, CDC, broadcast across the country by satellite by CDC, and has been continuously rebroadcast over the Internet. It is also available on videotape to health care providers.
The CFIDS Association's partnership with HRSA's area health education centers resulted in 78 new satellite viewing sites where over 1,200 provider participants learned about the diagnosis and management of CFIDS. Federal officials, health care professionals, and advocates have recognized this program as an important first step in a broad-based medical education initiative.
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As a result of the satellite program and other Federal and private sector activities, public consciousness was raised this year and the legitimacy of CFIDS better established. But we are at a critical juncture. Unfortunately, Mr. Chairman, there are several areas in which the Federal effort has stalled. I should like to bring these to your attention now and request that you address these issues at the appropriate times during this year's appropriation hearings.
First, in regards to the CDC's work on CFIDS, our intensified efforts over the past several months to track the use of Federal funds allocated to CFIDS research at CDC have been met with unclear answers that do not withstand close scrutiny. With support from the Office of the Assistant Secretary for Health, we have assurances that CDC will provide a complete accounting of CFIDS-related funds for fiscal year 1996 and 1997 by February 28. Should CDC still fall short of providing full accountability for claimed expenditures, we ask that you raise this issue with CDC officials during their appearances before this committee this spring.
The CFIDS program at NIH appears to have experienced a slight decrease between 1997 and 1998. Particularly in light of the 7 percent increase in NIH funding overall during that period, CFIDS funding is moving in the wrong direction. We have tried to verify this decrease, but the final funding numbers for fiscal year 1997, which were to be ready October 22 and then November 15, have still not been made available to us.
A downward trend underscores the need for clearer direction from Congress. Over the past 5 years, the association and Congress have encouraged NIH to focus efforts and expand research. The focus has yielded scientifically sound investigations to pursue, yet the expanded funding has not been forthcoming.
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We understand the subcommittee's reluctance to earmark, but in light of this discrepancy between an increase in overall NIH funding and the erosion of CFIDS funding, we have no choice but to ask once again that you direct NIH to provide an additional $10 million for extramural grants.
Persons with CFIDS continue to experience serious obstruction when seeking disability benefits from the Social Security Administration. These obstructions stem from lack of understanding by the Social Security Administration of the debilitating nature of CFIDS.
While we were initially encouraged by meetings with SSA's Office of Disability, their interest has not been sustained. We ask the committee to direct the commissioner to appoint a task force to ensure both attention and follow-up to the task of educating SSA personnel at every level about CFIDS.
Detailed requests on CDC, NIH, as I say, and HRSA are provided in my written testimony. Mr. Chairman, you are familiar with our issue, and I believe you will recognize some of these requests from past years. The association has strived to make consistent, reasonable requests, with the goal of providing greater clarification of issues critical to those who suffer from the disease. Using this strategy, we have been rewarded by the committee in many areas. However, as you can see, there are still great challenges ahead and your support is essential to overcoming them.
Thank you for your efforts on behalf of people with CFIDS, for your time and attention this afternoon, and for your thoughtful consideration of our request.
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[The prepared statement of Kimberly Kenney follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Ms. Kenney, I get the message. There was a witness in this morning's session that testified in his own behalf and raised the question of the words that describe the disease. It started as Epstein-Barr virus, or chronic Epstein-Barr syndrome, and has now been called CFIDS, and he is saying that we ought to change that. Do you agree? I thought he said that the association was working with him on this.
Ms. KENNEY. There is very broad-based support to change the name. I believe that the differences come in at what point it is appropriate to do so. I think most of the scientific community would prefer to wait until there is a scientific advance that would justify a change to another medically-based name. The patient community believes that they are stigmatized enough and would prefer that a name change occur sooner rather than later. We are trying to move the process along so that we can build consensus between both the patient and the medical communities.
Mr. PORTER. Am I correct that Epstein-Barr and CFIDS are one and the same, or am I not correct?
Ms. KENNEY. Epstein-Barr was originally thought back in the mid-eighties to be a potential cause of the syndrome. That was ruled out, I think, in 1988.
Mr. PORTER. So there is no connection?
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Ms. KENNEY. Most doctors will tell their patients that you have high Epstein-Barr titers and therefore you must have chronic fatigue syndrome, which there is no relationship between the two.
Mr. PORTER. We thank you very much for your testimony again. It is nice to see you. I did get the message.
Ms. KENNEY. Thank you.
—————
Wednesday, January 28, 1998.
WITNESS
THOMAS A. GENNARELLI, M.D., THE COALITION FOR AMERICAN TRAUMA CARE
Mr. PORTER. Thomas A. Gennarelli, M.D., professor and chair, Department of Neurosurgery, Center for Neuroscience, Pennsylvania head injury center, Medical College of Pennsylvania, Hahnemann School of Medicine, Allegheny University of the Health Sciences, testifying on behalf of the Coalition for American Trauma Care.
Dr. Gennarelli.
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Dr. GENNARELLI. Mr. Chairman, I am very pleased and very proud to have the opportunity to provide testimony today on the importance of supporting injury prevention trauma and burn care activities across the U.S. Public Health Service.
Although I am professor and chair of the Department of Neurology at Allegheny University, of the Health Sciences, I am here today as a member of the board of trustees of the Coalition for American Trauma Care.
Injury or trauma is one of the most, if not the most, important public health problems facing the United States today. It is the leading cause of death for Americans from age 1 through age 44, and more than 145,000 people die each year from injury, 88,000 from unintentional injuries, such as car crashes, fires, and falls, and 56,000 from violence-related causes. This relates to 400 deaths per day or 1 death every 3.6 minutes.
Of perhaps greater importance, injury is the most frequent cause of disability and loss of productivity. Millions of Americans survive injury each year, but many are left temporarily disabled, and some permanently disabled, with severe head, spinal cord, and extremity injuries. Because injuries strike the young disproportionately, injury is also the leading cause of years of lost work productivity, and at an estimated cost of $224 billion each year, trauma is our Nation's most costly disease.
This is background. The Coalition would like to provide the subcommittee with funding recommendations for injury prevention and treatment in four Federal public health agencies—the NIH, CDC, HRSA, and AHCPR.
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Regarding NIH, the Coalition supports the Ad Hoc Group for Medical Research Funding's recommendation of a 15 percent increase in funding for the NIH for fiscal year 1999. However, the Coalition is concerned that as much of this increase as possible come from funds that are in addition to currently tightly capped discretionary accounts, so that other public health programs will not suffer.
The Coalition also feels that some portion of this increased funding should be earmarked to enhance more trauma and burn care-related research. The Ad Hoc Group has called on the leadership of the NIH, with its extramural partners, to establish a process of consultation and planning to develop a comprehensive, creditable approach to allocating new resources based upon the most promising scientific opportunities and the most pressing public health needs.
Given national injury statistics, it is hard to argue with the reality that injury ranks as one of the most pressing public health needs in the United States today. Yet despite its huge impact on American society, less than 1 percent of the total NIH funding supports any research on trauma, basic or clinical.
The Coalition, as did a recent NIH trauma research task force, recommends increased funding for several resources within the NIH, including NIGMS, NIAMSD, NIAMSD, NINDS, NICHD, the National Center for Medical Rehabilitation, and the National Institute on Aging.
The Coalition also supports an additional $20 million for CDC's National Center for Injury Prevention and Control to further its new initiative, Safe America, through injury control. This is the amount the Center needs to begin major implementation of proven injury prevention strategies, such as bicycle helmet use, trauma care systems, and residential smoke detectors.
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The Coalition also urges you to provide $8 million in fiscal year 1999 to fully fund the Traumatic Brain Injury Act. Traumatic brain injury is the leading cause of trauma-related death and disability and is the silent epidemic that compounds itself every year, but about which very little is still known, despite some of us spending more than a quarter of a century in this research area.
The Coalition has other recommendations that are contained in my written statement.
The Coalition for American Trauma Care appreciates the support this subcommittee has provided to many trauma, injury prevention, and burn-related programs in the past. However, much remains to be done to address this leading public health problem so that we can achieve substantial health and social welfare cost savings through increased research regarding the timely treatment, rehabilitation, interventions, and prevention of trauma.
The Coalition looks forward to working with you to achieve these goals and thanks you for the privilege of this august floor.
[The prepared statement of Thomas A. Gennarelli, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Perfect timing.
Dr. Gennarelli, what is the relationship between the Coalition for American Trauma Care and the American Trauma Society?
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Dr. GENNARELLI. The Coalition for American Trauma Care is comprised of numerous scientific organizations and is the voice for that group. The American Trauma Society has a different constitution.
Mr. PORTER. Is yours scientific and theirs patients, basically?
Dr. GENNARELLI. Essentially so, yes.
Mr. PORTER. I asked Mr. Teter, who represented them—and I am not sure you were in the room then—to break down between intentional and accidental trauma. What percentage falls in each group, do you know?
Dr. GENNARELLI. It depends on how you want to present it. If you want to take all patients who experience injury, you probably would say 80 nonintentional, 20 intentional. If you include those just who die, because gunshot wounds have a much higher mortality than other kinds of injuries, then the proportion gets to be more 60/40. The deaths last year were 88,000 unintentional, 56,000 intentional.
Mr. PORTER. I see. Thank you very much for your testimony. We will do our best.
Wednesday, January 28, 1998.
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WITNESS
JOANNE PEASE, IMMUNE DEFICIENCY FOUNDATION, INC.
Mr. PORTER. Joanne Pease, Member, Immune Deficiency Foundation, Incorporated, testifying on behalf of the Foundation.
Ms. PEASE. Thank you for the opportunity to speak here today on behalf of the Immune Deficiency Foundation.
My three sons and my nephew have primary immunodeficiency diseases, which means that they were born with incomplete immune systems. My name is Joanne Bakken Pease, and I am a volunteer with the Washington State chapter of the Immune Deficiency Foundation.
As I tell my story today, I am mindful of the significant work being done by the Immune Deficiency Foundation on behalf of the approximately 40,000 individuals affected by these genetic disorders of the immune system. The IDF is developing a national registry of U.S. patients suffering from the most common of these disorders funded by a grant from NIAID. The registry is providing an important resource to physicians and investigators by giving them access to a more clinical understanding of these diseases.
The clinical information contained in these registries will help determine the frequency of complications, long-term prognosis, and possibly open the gateway for gene therapy. As a mother of three affected children, I am proud of the work of the Foundation, and, in sharing my story, I hope to express to you the need for this work to continue.
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In November of 1985, my eldest son, Curtis, received his vaccine for measles, mumps, and rubella. Curtis got the mumps from this vaccine in February of 1986, and the doctor told me, these things happen. After 3 years of constant colds and pneumonia, Curtis was diagnosed with X-linked Agammaglobulinanemia. I was thankful when I learned there was a treatment for him. However, the treatment consisted of a very painful injection administered every 10 days. This treatment, a pooled plasma derivative, replaced portions of his incomplete immune system. However, the pain involved caused this therapy to be a source of terror in our household.
When my second son, Jeff, was 10 months old, we learned he had contracted polio from the oral vaccine, signalling the presence of the same immunodeficiency. He was left with a withered right leg and a terribly deformed foot. Now both my beautiful boys receive these painful shots.
Three years later, they both started getting their medicine intravenously. Intravenous immune globulin was less painful and more effective, and it reduced our infusions to once a month. Jeff has had 6 very painful orthopedic surgeries, including tendon transfers and releases, hip rotation, hip reconstruction, leg rotation, and ankle repositioning. He is now ready for his seventh and eighth operations, which will be complicated leg lengthening.
My nephew, Joshua, was born in 1988 and my third son, Mitchell, in 1990. Both were diagnosed with XLA at birth and began their treatments.
We have learned to cope with the care necessary to keep our children alive. However, issues related to the safety of the blood supply make me feel that my children are so vulnerable. Between the four boys, they receive 70 infusions per year.
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My children's lives are not what I envisioned for them. The pain that I feel for the loss of my dream will never go away. We need to continue the focus on medical research so perhaps future generations will have the option of gene therapy and not have to suffer years of chronic care.
For fiscal year 1999, the Immune Deficiency Foundation recommends the National Institute of Allergy and Infectious Diseases receive a 15 percent increase over last year. This percentage translates into $202.7 million over fiscal year 1998 and would bring NIAID's total appropriation to $1.55 billion.
In addition, Mr. Chairman, I would like to make clear that although IDF strongly supports the concept of doubling NIH's overall budget in the next 5 years, we do not believe that these increases should come at the expense of other important Public Health Service programs.
As you regard your decision to increase funding, please remember my boys and the approximately 40,000 primary immunodeficient patients affected by your vote.
[The prepared statement of Joanne Bakken Pease follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Ms. Pease, I will remember your boys. My father had polio and had those same operations on his leg, or at least some of them that your son has had to undergo.
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Is this covered by insurance? How do you cope with the costs, in addition to the emotional problems?
Ms. PEASE. Our two boys have to be on a separate policy from my husband's group plan, because their costs are so high. The company does pay the premiums, and it is good insurance. For their infusions, we have had to go out of contract.
Mr. PORTER. Did you have any indication that there was anything wrong until they contracted these diseases?
Ms. PEASE. None; no family history. But, obviously, my sister and I are both carriers of this X-linked disease.
Mr. PORTER. Let me ask you, do you think NIAID is putting this at a high priority?
Ms. PEASE. I am not aware of the prioritizing. That is not my realm.
Mr. PORTER. Now that I think about it, that is an unfair question for you.
Ms. PEASE. I am hoping that it is up there.
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Mr. PORTER. Thank you very much for your testimony.
Wednesday, January 28, 1998.
WITNESS
MARIANNE PUCKETT, MEDICAL LIBRARY ASSOCIATION/ASSOCIATION OF ACADEMIC HEALTH SCIENCES LIBRARIES JOINT LEGISLATIVE TASK FORCE
Mr. PORTER. Marianne Puckett, chairperson, Medical Library Association/Association of Academic Health Sciences Libraries Joint Legislative Task Force.
Ms. Puckett.
Ms. PUCKETT. Mr. Chairman and members of the subcommittee, I am Marianne Puckett, associate professor of medical library science at the Louisiana State University Medical Center in Shreveport, Louisiana. I appreciate the opportunity to testify today on behalf of the Medical Library Association and the Association of Academic Health Sciences Libraries regarding the fiscal year 1999 budget of the National Library of Medicine.
First, let me thank you and the members of this subcommittee for your leadership in securing a 7.2 percent increase for the National Library of Medicine in fiscal year 1998. Regarding the NLM 1999 fiscal year budget, I will address three issues: First, basic services and personnel; second, outreach; and third, access to health care information.
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As we approach the next century, the medical library community believes that basic library services must still be the foundation for NLM's long-term success as a service agency. Unfortunately, the level of demand for basic NLM services and the rate of increase in the cost of medical journals and books have both been in the 10 to 15 percent range in recent years, far outstripping the library's budget increases.
Moreover, NLM's level of staffing has remained the same over the past few years. Maintaining the current standard of acquisitions, indexing, cataloging, database searching, and lending will become more and more difficult, if not impossible, unless NLM's budget and level of staffing are increased to reflect these rising work loads and costs. As a result, we urge the subcommittee to consider the need for increasing support in both budget and staff positions so NLM can meet its increasing service needs and ensure the quality of its programs is not compromised.
Second, NLM's outreach programs are of particular interest to MLA and AAHSL. These activities, designed to educate medical librarians and other health care professionals about NLM and the information services it provides, have proven to be extremely successful in improving the quality of our Nation's health care.
Although NLM has educated a significant number of health care professionals through its outreach initiatives in the 1990's, more work needs to be done in this area. There are still far too many health care workers in all parts of the country who are unaware that NLM and the National Network of Libraries of Medicine even exist. The need for a vigorous outreach program is now more important than ever.
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In 1997, NLM's database became available free over the Internet and Worldwide Web, opening them up to the general public and health professionals alike. NLM's outreach mission will not be complete until all who need access to science-based health knowledge are familiar with NLM and the information resources it provides.
Third, Mr. Chairman, the National Library of Medicine continues to be the critical investment agency for increasing the public's access to health care information. This is especially true for people living in medically underserved areas. For example, my institution maintains several telemedicine and distance learning sites throughout rural Louisiana. With the support of NLM technology and NLM's invaluable programs, we provide access to health information and educational resources to some of our State's most at-risk citizens.
In addition to support of telemedicine, NLM's High-Performance Computing and Communications Initiative and free Internet Medline have empowered Americans with the ability to access the world's most expensive library of medical data directly from their own personal computers.
The health sciences library community applauds Congress for its foresight in providing NLM with the necessary resources to develop these programs. There is no question that these technologies are having a profound influence on the delivery of health care across the country. To realize the full potential of these programs, though, it is crucial that Congress continue to provide NLM with adequate funding in fiscal year 1999.
Mr. Chairman, with the endless advances of the Information Age, it is obvious that the National Library of Medicine will play a major role in delivering health care in the 21st century. Therefore, the Medical Library Association and the Association of Academic Health Sciences Libraries recommend a 15 percent increase in funding for the National Library of Medicine in fiscal year 1999. This figure represents a $24 million increase over fiscal year 1998 and would bring the Library's total fiscal year 1999 appropriation to $185.4 million.
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In closing, I would like to make clear that although the medical library community strongly supports the concept of doubling NIH's overall budget in the next 5 years, we do not believe that these increases should come at the expense of other important Public Health Service programs.
Once again, Mr. Chairman, thank you very much for the opportunity to testify this afternoon. I would be pleased to answer any questions you may have.
[The prepared statement of Marianne Puckett follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mrs. Puckett, thank you for your testimony.
It seems that a number of our witnesses have put that disclaimer on at the end. I certainly understand it. I also don't want to get people's hopes up more than is justified by the fiscal situation in which we find ourselves. The first priority of the Congress will be to balance the budget, so that unless there are substantial increases in revenues of the type the President has proposed in his State of the Union Address, and will propose in his budget, I think it is going to be very difficult to reach the figure that all the witnesses have uniformly mentioned of 15 percent.
That doesn't mean we are not going to do our best to attempt to do so, but it means it is going to be difficult. That is why I have focused everyone to say, let us look at the budget process first, because that is where the determination really is going to be made as to how far we can move the funding forward.
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Let me ask you a question. First, let me say that I visited an inner-city community health center in Chicago last year, and as I passed a television screen, there was the National Library of Medicine's Medline right there. And what you say about the availability of the latest technology and procedures to everyone in the health care services community, it really is true. They are doing wonderful things, and we are great fans of the National Library of Medicine.
We have provided increases for NLM larger than the ones that they have asked for, but you are telling me that they need to increase their staffing. Does Dr. Lindberg agree with that? He has got the money to do so if he thinks he needs an increase in staffing, or at least we think he does. Would he agree that he needs more staffing?
Ms. PUCKETT. Yes. He does. I think that they were still—perhaps some of the funds that belong to some of the other programs, the HPPC, the initiative in working with that issue, they are still looking for more staff because of the increase in load.
What the National Library of Medicine is actually taking on with all this increase of services, to do this, we need more and more people there so that a good job can be done and we can stay with the same level of excellence that you, and other Members of this Congress and the people at large know of what NLM does for them.
Mr. PORTER. Perhaps that will then be reflected in the President's budget figure for NLM this time. It has not been reflected in the past, obviously, and we have attempted to give them all the resources that they possibly need within their capabilities of doing that. We will certainly take a look at it and see if we can do a better job.
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Ms. PUCKETT. Thank you.
Wednesday, January 28, 1998.
WITNESS
DAVID WHISTON, AMERICAN DENTAL ASSOCIATION
Mr. PORTER. Dr. David Whiston, the president of the American Dental Association.
Dr. WHISTON. Nice to see you, Mr. Chairman. Thank you very much for the opportunity.
As you mentioned, I am here as the president of the American Dental Association and also as a practicing dentist across the river in Arlington, Virginia, although our headquarters are in Chicago, as you know.
Certainly, with the passage of the State Children's Health Insurance Program, some Medicaid changes over this past year, I think we can safely say it has been the year of the child relative to health care in general, particularly relative to oral health care, and I certainly want to acknowledge the work that the subcommittee has done, you in particular, in enhancing support for issues of prevention and research and education.
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We think there are new opportunities this year, and we would specifically like to address the segment of the population that classically seems to fall through the cracks as these issues develop.
Particularly in our field, we see about 25 percent, primarily of needy kids, who have over 75 percent of the tooth decay, the dental decay, that we see and treat in our offices every day. So we want to try and focus on that group.
I would like to just, again, touch on three broad areas where we feel that that focus should take place, and, again, that is prevention, research, and education.
On the preventive side, certainly the maternal-child health block grants, where you have been extremely supportive relative to the SPRANS activity, trying to enhance community water fluoridation initiatives, then as those initiatives develop and continue to outreach to the States and it is necessary for implementation, we certainly would speak for enhanced support of the Division of Oral Health within CDC; not only for fluoridation but also for, for example, other preventive measures, really proven, cost-effective measures such as placement of dental sealants, and we see that sealant utilization is just a touch under 30 percent. So we would like to see certainly increased activity there.
Beyond prevention, I think we quickly enter into the research area, and research for us primarily means National Institutes of Dental Research; certainly need for increased support relative to the dental and craniofacial issues, that they continue to be on the cutting edge of research there but also, for example, some of the dramatic links we are seeing now between periodontal disease on the one hand and low birth weight infants on the other, periodontal disease and cardiovascular disease. Some of those issues really need increased research.
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On the education front, just to briefly touch on four particular items under that heading, certainly the general dental residency program, with particular emphasis on pediatric training, because that is where the greatest shortage is in the dental prevention; loan repayment programs, where received practitioners go to underserved area; the Ryan White HIV/AIDS reimbursement program; and, finally, the minority and disadvantaged programs. Those four areas, in particular under education, we would like to speak for enhanced support.
All of these have been proven cost-effective ways of addressing deficiencies in the specific target areas. And certainly we realize, given all the testimony that we have heard, as you have heard today, that you have very difficult decisions to make with finite resources. We would ask for your continued great personal support for these particular areas: Prevention, research, education.
Thank you for this opportunity to appear before you.
[The prepared statement of David A. Whiston follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Well, Dr. Whiston, we very much appreciate your testimony. All of the areas that you have touched on are obviously priorities. The difficulty, as you point out, with our subcommittee is that there are so many important priorities, I think, for people under our jurisdiction. I won't repeat my sermonette again, but it is really where we must get some progress. And if we can, then we can address each of these areas in an even more forceful way than we have in the past.
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Dr. WHISTON. We really, obviously, appreciate the dilemma and, again, certainly appreciate the great support that you have given our profession, but health care in general over the years. We really appreciate it very much.
Mr. PORTER. Off the record, I think that they ought to provide a perk to the president of the American Dental Association and allow you to spend a year in our great City of Chicago.
Dr. WHISTON. I would like that. I have tried to find ways, but they seem to like citizen soldiers in our profession, so I will continue to practice.
Thank you very much.
Mr. PORTER. Thank you so much for appearing, for your testimony.
The subcommittee will stand in recess until 10:00 a.m. tomorrow.
Thursday, January 29, 1998.
WITNESS
ANNA STREET, NATIONAL JOB CORPS COALITION
Mr. PORTER [presiding]. The subcommittee will come to order.
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I have to remind witnesses that there are two provisions in the House rules that they must be aware of, and I'm talking about nongovernmental witnesses. In addition to their written statement, they must submit a curriculum vitae and a statement of Federal grant or contract funds that they or the entity they represent have received. If you have any questions about these rules, and whether they apply to your situation, or how to comply, please contact the subcommittee staff.
I will also warn all the witnesses that the staff has a new innovation this year. Tony, why don't you hold that up? He's getting very tough on the time, and he'll be timing witnesses. The reason for it is that we have 200-plus public witnesses, and even at that, we are not able to accommodate all those people who wanted to testify. So we're going to have to be pretty strict about our five-minute time limit, and I think you're already probably aware of that.
With that, our first witness is Anna Street, Center Director at Partners in Vocational Opportunity Training, testifying in behalf of the National Job Corps Coalition.
Ms. Street.
Ms. STREET. Thank you very much. Thank you. Chairman Porter, members of the subcommittee, it's a great honor for me to speak before you today on behalf of Job Corps. As some of you may know, Job Corps gave me my second chance. I graduated from the Tongue Point Job Corps Center in 1968. I sit before you as a testimony of what Job Corps can do for a young man or woman with the determination and perseverance to take advantage of all that this program has to offer.
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Every day I see not only what the program can do for young people, but what Job Corps represents to them. It is a beacon of hope in an otherwise hopeless life. The PIVOT Job Corps Center is a pilot site of the Springdale campus located outside of Portland, Oregon. PIVOT stands for Partners in Vocational Opportunities Training and was established as a pilot in 1989. PIVOT is a specialized campus in that we serve exclusively young mothers and provide onsite child care for their children. Although to many people these young women are statistics, they aren't to me. They're young people with dreams just like you and me. Job Corps represents the only way for many to make these dreams a reality today. Let me tell you about these dreams.
They are not about wealth or fame. They are about down-to-earth values we've all been taught to treasure--a home, a family, a good job to make it happen. We take this for granted, but for the young people that go to Job Corps this is what keeps them going: the knowledge that through Job Corps they have a chance.
Your support for this program has been instrumental to many. Your continued support for operational funds for Job Corps is indispensable. However, ever-increasing demands on our operational budget are made every day.
Since 1993, every contract center's operational budget has been under a mandated ceiling of 3 percent a year. Much of Job Corps' services are noncontrollable costs such as food, clothing, medical services, utilities, and health insurance. Any cost increases greater than 3 percent are taken from controllable costs: staff, salaries, and wages. Generally, even city, county, and State governments allow between 5 and 6 percent.
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Since 1993, we've added many student services requiring additional highly-qualified staff, such as the implementation of zero tolerance policies and the institution of a 13-week follow-up program to ensure that our students are successful once placed on jobs. Mr. Chairman, Job Corps is a labor-intensive program. Each human life entrusted to us is individually guided through the program. Thus, the quality of services delivered to these young people, as well as their ultimate success, is greatly dependent upon the capabilities and quality of the staff caring for them. If we jeopardize the quality of our staff, we jeopardize the quality of our program and our product, which is to produce taxpayers, wise consumers, good parents, good employees, and, yes, future leaders.
Diminishing numbers of staff at the national and regional levels affect the program's ability to oversee the increased services required by our students, as well as the expenditure of funds this committee entrusts to the program. I ask the committee to see what more can be done by the Department to ensure adequate coverage and oversight of Job Corps.
The committee has supported the need to replace, repair, maintain, and build Job Corps centers. Just this past year, $4 million was appropriated to start the process of incremental expansion. For that, we in the Job Corps community are truly grateful.
As you know, the need for Job Corps has not abated. From my experience, there are ever-increasing numbers of young people that can benefit from this particular program. Mr. Chairman and members of the committee, you can make the difference, and you do. Your continued support for the establishment of new centers, satellites, and pilot programs like the PIVOT program, is critical if we're going to keep pace.
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Each new slot that you fund at a new campus represents a human investment, an investment in the health of our communities, free from poverty, drugs, and crime. And you know this is true because Job Corps proves itself with results year after year.
Last year the committee also asked that the repair and maintenance process on centers be somehow expedited. I couldn't agree with you more and applaud your efforts in this area. There needs to be a cost-effective and time-efficient process established, possibly de-centralizing this activity at the contracting and administrative levels. There has to be a better way to ensure that centers don't remain on long waiting lists without knowledge of when repairs will happen.
We've talked about the need to adequately fund and expand Job Corps. However, I've found that through my years in the program that if child care were available more extensively throughout the program, many more young parents, particularly young women, could take advantage of this second chance.
Mr. Chairman, you and the members of the committee, recognized the importance of child care last year when you instructed Job Corps and Head Start to seek ways to work together. I agree. There needs to be a partnership between these two organizations.
Currently, Job Corps has 19 child care facilities on 19 campuses nationwide out of 115 centers. Most of these programs, like PIVOT, are offered as a service to nonresidential students, students who do not live on campus. They provide child care services for single parents enrolled in Job Corps, and I can tell you from my own experience in Oregon, young, economically-disadvantaged——
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Mr. PORTER. If you can finish——
Ms. STREET [continuing]. Oh, okay—disadvantaged women face seemingly insurmountable challenges in daily life. So your support for this Job Corps program, which really does continue to serve young at-risk people, and help work in collaboration with welfare-to-work, school-to-work programs and continues to work with placing them in the workplace, it's very, very important.
I thank you for this opportunity to testify before you today, and I ask that you remember that you've been given the power to make these dreams come true. Please remember Job Corps and the lives of its young people, their dreams, and their successes, because you often do—you really do—make the difference.
Mr. PORTER. Ms. Street, one of the things that you—all of the things you said, but particularly one of the things that you said struck me as absolutely critical for everything that we are privileged to fund. You said Job Corps proves itself with results.
Ms. STREET. Yes, sir.
Mr. PORTER. The money we invest in Job Corps proves itself in the lives of young people, and they are, in respect to our society, probably the most at-risk young people of all. We are great fans of Job Corps.
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Ms. STREET. Thank you, Chairman Porter.
Mr. PORTER. As you probably are aware, in 1995 when we were required to make huge cuts in our budget, there were 10 programs that we did not cut; one of them was Job Corps.
Ms. STREET. Thank you.
Mr. PORTER. Because we believe in it. The restraints which you're working under are restraints that exist in the law, so we can't do anything about that, but we can put it at the high priority that it deserves, and we will do our best to do that.
Ms. STREET. Thank you, Chairman Porter.
Mr. PORTER. Thank you for the wonderful job that you're doing.
Ms. STREET. Thank you. It's a pleasure.
[The prepared statement of Anna Street follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
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DAVID HYDE PIERCE, ALZHEIMER'S ASSOCIATION
Mr. PORTER. Our next witness is David Hyde Pierce. He is the co-star of the NBC series ''Frasier.'' We're delighted to welcome ''Niles'' to our table. [Laughter.]
I told him a minute ago that my wife, Catherine, and I have an opportunity to watch just two shows on television, in addition to the news, and one of them—and we are absolute regulars—is Frasier. So we're delighted to have you here, Mr. Pierce, and you're going to be testifying on behalf of the Alzheimer's Association.
Mr. PIERCE. Yes.
Mr. PORTER. Mr. Stenny Hoyer.
Mr. HOYER. Thank you, Mr. Chairman. I want to join you in welcoming ''Dr. Crane'' to the table. [Laughter.]
Phyllis, I thought maybe you were representing ''Dr. Crane'' in your other hat with psychiatrists, but we're glad to have you here.
Mr. Chairman, I have the opportunity to participate in press opportunity this morning with Mr. Pierce, a distinguished actor, as you know, a graduate of Yale, and he and his sister, Nancy, are here with us. He has a compelling story to tell. I said this morning that I was always very pleased that people who are celebrities, and therefore can focus attention on issues, some obviously spend their time focusing the public's attention on what I would call the insubstantial—I guess that's as kind a word as I can choose for it—and some others, being a celebrity allows them to focus their attention on compelling issues concerning our society. Obviously, David Pierce is one of the latter, and we very much appreciate, Mr. Pierce, you and your sister being here. I know the committee looks forward to hearing your compelling story.
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Thank you, Mr. Chairman.
Mr. PIERCE. Thank you. I just have to say I'm honored to be here; I'm also a little apprehensive. I played John Dean in a movie a couple of years ago—[laughter]—and sitting in front of you all, I'm having terrible flashbacks. [Laughter.]
But I'm here for a good cause, so I'm going to push through.
Mr. Chairman, members of the subcommittee, I'm here on behalf of the Alzheimer's Association, but I'm really here on behalf of my family and the millions of families like mine across America. My grandfather died of Alzheimer's disease, and I was trying to think of a way to explain to you how awful that was, how devastating that was for my entire family, when I had the terrible realization that I probably don't have to explain it to you because Alzheimer's disease is now so widespread that every one of you knows someone, a family member or a friend, or a former colleague who is suffering with this disease. And so you already probably feel, as I do, that I cannot bear to see someone I love go through this ever again.
That is why I'm here today, to ask you to invest an additional $100 million in Alzheimer's research at the National Institutes of Health to launch an immediate, all-out Alzheimer's disease prevention initiative, and I want to emphasize ''immediate'' because there is a time issue here. Researchers are telling us now that Alzheimer's disease begins attacking the brain cell by cell as much as 20 years before the onset of the symptoms we all associate with the disease. By the time the symptoms occur, it's too late; so much of the brain is destroyed, nothing can be done—20 years. That means that half of us in this room who may get Alzheimer's have that time bomb ticking in our heads right now.
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Four million Americans suffer from Alzheimer's now. If the disease goes unchecked, by the baby-boomers, our generation, reach the age of maximum of risk, 14 million Americans will suffer from the disease. Every one of them will lose their memory, their judgment, their ability to perform basic daily tasks. Every one of them will require full-term care. That care would be mostly provided by their families, and their families will be bankrupted emotionally, physically, and financially by that. I think that alone is enough for a compassionate nation to launch an all-out war on this disease.
But there's another very compelling reason for Congress to do something now, and that is: you cannot save medicare and medicaid if you let 14 million baby boomers get Alzheimer's disease. Medicare spends 70 percent more on a beneficiary who has dementia than on one who doesn't, and almost half of medicare patients who have Alzheimer's also use medicaid because they've gone through all their resources, spending on average $47,000 a year on the long-term costs that medicare doesn't cover. So medicare and medicaid can't survive the onslaught of this disease.
There's one more aspect of the time element that I want to convey. As there is a lag between the onset of the disease and the onset of symptoms, there is also a lag time between the beginning of research and the fruits of research. Now in the early nineties, Congress doubled funding for the Alzheimer's research of the National Institutes of Health. We are now today, this year, seeing the results of that investment with incredible discoveries every week coming out NIH-supported laboratories. The problem is, since 1992, funding has leveled off, and it's not keeping pace with the scientific opportunities. Scientists now know what they need to do in order to find a cure for this disease, and there isn't enough money at the NIH for them to do it. They have discovered simple treatments, like vitamin E and ibuprofen, which may slow or stop the progress of the disease, but they need to do large-scale clinical trials in people my age to find out whether that's really an effective cure. They have to find clear biological markers, so we can identify people at risk, and treat them before the symptoms occur and it's too late. They have to develop laboratory models to check the progress of the disease and come up with more effective treatments.
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Finally, while we're researching a cure, we have to find better and more cost-effective ways to treat the people suffering from the disease for whom a cure will come too late. If we don't do this now, we will lose another generation, our generation, to this disease.
For my family, for all of our families, I urge you to invest $100 million in Alzheimer's research at the National Institute of Health, and please do it now, because time is running out. Thank you very much.
Mr. PORTER. Mr. Pierce, three years ago, we had before this subcommittee as public witnesses a woman who was probably in her—she might have been 50 or 51 years old. She came and sat at the table there, and talked about her husband, who sat next to her. He had been a decorated Navy pilot and had then had a career as a test pilot following that, and she said that Alzheimer's came upon him at a very young age. He did not any longer know her most of the time, and he was maybe 55 years old. And she said, think about, if you will, with our life expectancies, we're going to have the rest of our lives in this situation, and what that devastation will do to each of us and our families and our children. I think that deeply touched—it certainly did me—every member of the subcommittee.
This subcommittee puts biomedical research funding at the very highest level. I said a moment ago that there were only 10 line items out of 800 that we raised three years ago when we had to make severe cuts to work toward a balanced budget. In that context, when the Budget Committee was suggesting we cut NIH 5 percent per year for five years, we raised NIH 5.7 percent. The year before last, 6.9 percent; last year, 7.1 percent, and I can assure you that this is absolutely one of the highest priorities that this subcommittee has—of any.
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We don't fund by disease, but we do fund by institute, and we don't direct science, but we sure do tell them what our priorities are. I think that you'll find that this subcommittee shares your deep concern and has, I hope, an understanding of the devastation that this disease causes, and, in addition, understands the opportunities that are there if we can reach out for them and provide NIH the resources that they need.
So my promise to you is that we will do our very best to try to get those resources to NIH and have that job done.
Thank you.
Mr. Hoyer.
Mr. HOYER. Mr. Chairman, thank you very much.
I know the committee—and to everybody in the audience, you had no prepared statement; you, obviously, in the first place were impacted by this, but as I pointed out at the beginning, not only are you personally affected, but taking that experience and, obviously, versed yourself in knowing what this is about and what can be done. Thank you very much for your dedication. Certainly on behalf of your grandfather, if you hadn't gone through the consequential impact of the Alzheimer's disease on your grandfather and your mother and her sister, which obviously devastated them, as well as your grandfather—it is compelling testimony.
Mr. Chairman, I'm going to have to leave. I apologize for that. I have another hearing—as you know, we have multiple hearings in multiple committees—that I need to do.
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As I look behind me, you would be amazed, I want to tell the witnesses, I had a fellow on loan from the Secret Service. There's a program of exchange. He was here and he sat in this room, and most of the time I wasn't here because I was in other hearings. I'm the ranking member on another committee. He said he learned more in the three months of hearings than he had learned in a lifetime. He was in his forties. So that these folks back here [referring to staff] are listening intently, and they are very compelling when they come back and tell us about the testimony. I'm always, Mr. Chairman, I know as you are, concerned that we can't all be at two or three places at the same time, so we could listen to the very compelling testimony, like David's, but so many others who are going to testify after.
Thank you, Mr. Chairman. I thank all of you.
Mr. PORTER. Can I add one thing? Stenny said that it's important that people who are in the public eye, celebrities and the well-known, stand up for the things that are important to them and important to all Americans. I admire someone like you who comes up and lays before us your family's problems with this disease and catches the attention of the public and focuses on something that's so important to every person on the planet. So thank you for coming here to testify today.
Mr. PIERCE. Thank you.
Mr. PORTER. We very much appreciate it.
Mr. PIERCE. Thank you, Mr. Chairman.
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Mr. PORTER. Thank you, Mr. Hoyer.
[The prepared statement of David Hyde Pierce follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
ROBERT WILSON, WILSON ASSOCIATES
Mr. PORTER. Our next witness is Robert Wilson, Wilson and Associates, testifying in respect to neurofibromatosis. Mr. Wilson.
Mr. ROBERT WILSON. Thank you, Mr. Chairman, for the opportunity to present testimony on the need for a continued Federal commitment to research for neurofibromatosis, also known as NF, a terrible genetic disorder closely linked to cancer, brain tumors, and learning disabilities affecting over 100 million Americans.
I am Robert Wilson, president of Wilson Foundation. My 11-year-old son, Michael, suffers from a severe case of NF. I have been working for many years with NF groups from around the country, the growing NF scientific community, Members of Congress, and the National Institutes of Health. I appear before you today on behalf of Michael and the 100,000 other Americans who suffer from NF, as well as the tens of millions of Americans who stand to benefit from NF research.
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As a result of your support for biomedical research, each year that I appear before your subcommittee I bring exciting news of a breakthrough in NF research that moves us closer to a treatment and cure for this terrible disease. Once again, I'm able to report to you a major breakthrough since last year which holds promise not only for the individuals suffering from NF, but also for the 100 million Americans who also suffer from NF-related diseases.
Last spring, researchers at Cold Spring Harbor Laboratory and the Massachusetts General Hospital in Boston have determined for the first time that the NF gene in the fruit fly is linked to learning and memory disabilities. The studies show that the protein made by the NF–1 gene is part of the pathway which is known to control learning and memory, while at the same time still being implicated with NF's cancer-fighting tumor suppressor functions. The major breakthrough leads to new opportunities for drug and genetic therapies for NF patients, experiments which have already begun on the fruit fly. Cold Spring Harbor Laboratory stated in a recent newsletter that NF research stands to benefit ''a vast segment of the human population, including those afflicted with learning disabilities, Alzheimer's disease, and other dementias.''
NF, incorrectly, but commonly known as the elephant man disease, involves the uncontrolled growth of tumors along the nervous system which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer, and even death. It is the most common neurological disorder caused by a single gene.
Dr. Samuel Broder, former Director of the National Cancer Institute, stated that NF was at the ''cutting edge'' of cancer research. This cancer connection was at the heart of two major conferences on NF held in October 1995 and July 1997 at the Cold Spring Harbor Laboratory in New York, one of the world's leading cancer and neuroscience research laboratories headed by James Watson, the co-discoverer of DNA. These conferences brought together basic researchers, clinicians, biotech, and pharmaceutical companies from around the world to find a treatment and cure for NF. After the first conference, more than 20 leading NF researchers worked for over one year preparing a detailed blueprint for finding a treatment for Nf. This document has been well received at NIH and many researchers are calling for this document to be used as a model for how NIH should fund further research.
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The enormous promise of NF research is its potential to benefit tens of millions of Americans in this generation alone. It has gained increased recognition from Congress and the NIH. For Fiscal Year 1999, I encourage the subcommittee to support the following four-part NF research agenda, which expands upon the advances made to date:
One, increase appropriations for NIH. Sustained growth for the NIH is necessary to seize the tremendous opportunities brought about by previous research successes built past scientific achievements, address present medical needs and anticipate future health challenges. Toward this end, I encourage the subcommittee to support the recommendation of the Ad Hoc Group for Medical Research Funding, which calls for a 15 percent increase in the NIH budget for Fiscal Year 1999. This represents the first step toward doubling the NIH budget over the next five years.
Two, increase appropriations for NF research. In addition to holding the promise of improving the lives of tens of thousands of individuals who suffer from NF, recent research has demonstrated that NF research stands to benefit the 100 million Americans who suffer from cancer, brain tumors, and learning disabilities. Therefore, I urge the members of this subcommittee to increase funding for NF research at NIH.
Three, continue cooperation and coordination between NCI and NINDS through targeted NF research programs. In your Fiscal Year 1998 report, the subcommittee encouraged NCI and NINDS to coordinate efforts and to pursue an aggressive program in basic and clinical research. I applaud NCI and NINDS for the coordination that has occurred to date, and encourage the committee to continue to urge the continued expansion and the coordination for NF research.
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Four, target funding for the implementation of the clinical research initiatives generated at the Cold Spring Harbor Conference. As developed by Cold Spring Harbor Laboratory at its NF conference in October 1995, NF should become the model for scientist-initiated proposals to fund clinical treatment research for specific diseases which offer the potential for significant advances in broader areas, such as tumor suppressor genes.
In closing, Mr. Chairman, with only a small investment, dramatic advances in NF research have been made with far-reaching implications for many other diseases. Many of the world's leading NF researchers now believe that, with an increased investment, and a research agenda focused on all aspects of the NF research portfolio, from basic research in the labs, to drug development and genetic therapy, a treatment and cure for NF can be found in the next few years.
I would like to end with a statement that appeared in a recent edition of the Cold Spring Harbor Laboratory newsletter which focused on major breakthroughs in NF research. The hope is that the day may come when doctors can flip critical switches to repair the broken circuits in each of these disorders. Such life-changing therapies will be the reward for years of enthusiastic basic research. I believe, Mr. Chairman and members of the subcommittee, that with your continued support, that they will soon be here.
Thank you.
Mr. PORTER. Mr. Wilson, thank you for your testimony and for your working to draw attention to this disease, and to come here to urge us to direct more funds toward biomedical research. You are going to get my sermonette, but it's for the whole audience.
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Mr. WILSON. Right.
Mr. PORTER. And that is that I think that the desire to bring as much resources as possible to bear on biomedical research exists on this subcommittee. It's a high priority for us. The difficulty will be that in order to even think in terms of an increase in magnitude in that program or other programs outside of biomedical research under the jurisdiction of this subcommittee, we are going to have to have a budget allocation large enough, obviously, to accomplish that. The budget allocation comes through the budget process, which is under the jurisdiction of our Budget Committee in the House and the Senate. That's where the first action that could set the basis, the foundation, for the kinds of increases that the ad hoc committee is talking about occurs. So, in a sense, you're preaching here to the choir.
Mr. WILSON. Sure.
Mr. PORTER. But don't overlook the need to also talk to members of the Budget Committee and tell them that this is a high priority for this country, and that we need the kind of allocation that will allow us to do the kinds of things that you and other witnesses have suggested and the ad hoc committee has strongly promoted.
So we're willing. Give us the resources, and we can do great things, but we need help in getting those resources.
Mr. WILSON. Right.
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Mr. PORTER. I have to lay that sermonette on every witness group.
Mr. WILSON. No, I agree with you, and I think if the members of the Budget Committee were to go up to NIH and meet with some of the heads of the NCI and NINDS, and so forth, they would see the enthusiasm that they have——
Mr. PORTER. Assuredly.
Mr. WILSON [continuing]. And the breakthroughs that they are making on a daily basis. And they are so excited. They feel like this is ending a man to the moon. They are making—they have so much enthusiasm, and they're really predicting that treatment and cures are closer and closer.
Mr. PORTER. If you're focused on dollars—and we must be—there isn't a better investment because it repays itself in health care costs saved in the future——
Mr. WILSON [continuing]. Absolutely, absolutely.
Mr. PORTER. So many times over. If we can focus the Budget Committee on those two things, I think you're exactly right. So we're going to work on that. We hope you will also.
Mr. WILSON. Yes, and as an example, my son has learning disabilities, and it's costing the school system an additional $60,000–$70,000 a year alone for one child.
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Mr. PORTER. Exactly.
Mr. WILSON. Those are big dollars for a school system to spend on a number of kids that obviously have a lot of different learning disabilities.
Thank you.
Mr. PORTER. Mr. Wilson, thank you so much.
[The prepared statement of Robert Wilson follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
DR. NICOLE LURIE, SOCIETY OF GENERAL INTERNAL MEDICINE
Mr. PORTER. Our next witness is Dr. Nicole Lurie, MD, president of the Society of General Internal Medicine; professor of medicine at the University of Minnesota, testifying on behalf of the Society. Dr. Lurie, welcome.
Dr. LURIE. Thank you. Good morning, Mr. Porter, members of the subcommittee, and your staff. Before I go into my prepared remarks, I'm going to ask you to step back for a moment and imagine yourselves 10 years from now, sick with a chronic illness, maybe even Alzheimer's disease. You have a lot of life ahead of you, and you want to spend as little of it as possible in the hospital. You're being cared for by a doctor who is being trained today. But that doctor hasn't been taught to care for your special needs in a home or outpatient setting, and worse yet, doesn't have at his or her disposal the best evidence about the most appropriate treatment that will lead to the best outcome for your disease. That's a real scenario, and one that will occur unless we fund AHCPR and title VII programs at a level that will let them do their jobs.
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I'm pleased to be here today on behalf of the Society for General Internal Medicine, an organization representing the nearly 3,000 physicians who are primary care, internal medicine faculty of every medical school and major teaching hospital in the United States. SGIM members prepare medical students, residents, and others to be primary care doctors for the 21st century, and they conduct research that improves patient care.
Let me talk first about health professionals' training. As you know, medical practice has changed drastically over the last two decades, moving from a primarily hospital setting to the outpatient arena, and it will change even more in the next 10 years. Unfortunately, our primary way of funding graduate medical education—that is, through medicare—provides little support to train outside the hospital. This is a major impediment to training physicians who are prepared to practice in current and future environments and manage the ever-growing population of patients with chronic illness that we're hearing about.
This funding mechanism only works well if we want to train most doctors to practice in the past; I don't think we do. General internal medicine/pediatrics title VII programs provide the major source of funding for primary care training, permitting us to train health care professionals for the 21st century, and to train them to care for underserved populations, which will in all likelihood still be with us.
SGIM is particularly proud of the track record of title VII-supported general internal medicine grant programs. Over 69 percent of HRSA-funded internal medicine program graduates go on to primary care practice after graduation—nearly twice the rate of internal medicine programs without title VII funding. Over 40 percent of internists trained through title VII-supported have established practices in medically-underserved communities in the past two years. You should know that the appropriation for general internal medicine programs in Fiscal Year 1998 was insufficient to permit the funding of new or competing renewal applications. While we recognize that your support has allowed these programs to survive at all, we urge you to fund title VII at a level that actually lets it get the job done.
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Let's shift gears for a moment and talk about AHCPR. As you probably know, the Agency for Health Care Policy and Research is one of three science agencies in the Federal budget that are necessary to maintain and improve the health of our Nation.
We've just heard a lot about NIH, and the NIH budget is necessary to bring laboratory-based knowledge that will someday be translated to clinical application at the bedside. The CDC provides the science for public health. Despite this, you and I hear all the time the cries of alarm at the state of our health care system, and there's a serious disconnect here.
It's the AHCPR that supports the discovery of new knowledge that can improve the health care system and can identify the highest quality, most cost-effective ways to get scientific breakthroughs into the health care delivery system in America. Yet, is it an agency that is seriously underfunded.
Just like at the NIH, some of the best work comes from investigator-initiated programs, but inadequate funding means that the AHCPR can support only a very small handful of individual investigators. Many, like myself, no longer even bother to prepare grant proposals for the AHCPR because the funding prospects are so bleak. Since 1994, the AHCPR has cut the number of funded investigator grants by over 50 percent. Ultimately, this translates into denied opportunities for the American public, and for you, the Congress, to make wise policy choices and save money. It may mean that we don't have the evidence to best treat your problem ten years from now, and will have to rely on anecdote instead.
On a positive note, let me give you a couple of examples of recent research released by the agency, because it is this type of research that both improves quality of care and cuts health care costs, that a funding increase could support.
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Middle ear infection is the most frequent diagnosis requiring antibiotics for children in the United States. AHCPR-supported research at the University of Colorado found that common ear infections in children with less expensive antibiotics, instead of more expensive ones, could save millions of dollars a year without changing recovery rates. The study estimated that in one State alone, and one program alone, the Colorado medicaid program could have saved almost a half million dollars by implementing this change in treatment.
Research supported by AHCPR also leads to the development of new technology that can be applied to make the functioning of the health care system more efficient. Recently, a tool to predict whether someone with chest pain is actually having a heart attack has been shown to reduce unnecessary coronary care unit admissions by 30 percent. This translates into 250,000 fewer critical care admissions a year, keeping people out of the hospital, and about a $3 billion savings per year in the U.S.—by all standards, a great return on investment.
Mr. Chairman, our funding recommendations for the title VII internal medicine/pediatrics programs is for $25 million for this year. This will allow for some growth within the program, but it will take closer to $50 million if you are really serious about getting the job done in the future. Our recommendation of $306 million for the entire title VII program reflects the recommendations of the Health Professions and Nursing Education Coalition.
For the AHCPR, we will ask you to provide the funding necessary to repair the damage done over the past three years to the investigator-initiated grant program and to the training program. We recommend an AHCPR budget of at least $175 million, a $32 million increase. But, remember that in just one year example I've shown you how a modest investment translates into a gigantic cost-saving, in this example, of up to $3 billion. I think it's a great example of fiscal responsibility.
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I'd like to close by thanking you and your subcommittee for the strong support of the title VII programs and the AHCPR in the past. I look forward to your continued support in the future. I'd be pleased to respond to any questions. Thank you.
Mr. PORTER. Dr. Lurie, thank you for your testimony.
Regarding AHCPR, you're probably aware that there are a few detractors in Congress on AHCPR, and that became a major issue about two-and-a-half years ago——
Dr. LURIE. Yes.
Mr. PORTER [continuing]. And we felt that we had done a good job in getting them the resources that they ultimately were allocated. I think your testimony is exactly right, AHCPR does a wonderful job, and in the process it's bound to gore a few oxes that perhaps need goring. We ought to pay very close attention to the work that they do and give them adequate resources to do their job. So I think you're exactly right, and we'll do our best to both of those, both title VII and AHCPR.
Dr. LURIE. Good. Thanks. As I'm even listening to this testimony this morning, I'm struck time and time again of how much promise there is and how much we need to separate out the promising things that actually work from the promising things that stay as promise in the future, and I think that's AHCPR's job. Thank you.
Mr. PORTER. I think you're right.
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[The prepared statement of Nicole Lurie follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
DR. JOSEPH HOBBS, ORGANIZATIONS OF ACADEMIC FAMILY MEDICINE
Mr. PORTER. Dr. Joseph Hobbs, M.D., president of the Society of Teachers of Family Medicine and associate dean of primary care at the Medical College of Georgia, testifying in behalf of Organizations of Academic Family Medicine. Dr. Hobbs, welcome.
Dr. HOBBS. Good morning.
Mr. PORTER. Good morning.
Dr. HOBBS. Mr. Chairman, I'm Joseph Hobbs, M.D., associate dean for primary care at the Medical College of Georgia and president of the Society of Teachers of Family Medicine. I appreciate this opportunity to speak in support of critical funding of family medicine training and research.
Mr. Chairman, this committee has been very supportive of health professions training in general and family medicine training in particular. We appreciate that support and hope that you will be able to sustain your efforts in the coming Fiscal Year. We ask that you continue to value family medicine training made possible by title VII funding, which helps to support an educational infrastructure that produces family physicians—these flexible, well-trained physicians whose broad-based training makes them especially qualified to serve in rural, innercity, suburban, and other settings, responding to the primary care needs of all populations.
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The organizations of academic family medicine have asked this committee to support these programs at a new authorized appropriated level of $87 million for section 747, family medicine training. There's good justification for this funding level because section 747 has facilitated the recent successful establishments of departments of family medicine in many medical schools. Third year required family medicine clerkships which we know influences the choice of primary care now exist in many more medical schools as a result of these programs. The vast majority of the residency training grants last year in family medicine met the funding preference to service the underserved, thus meeting congressionally-mandated health care service goals.
Our recommended funding level is the result of a strategic plan developed by the academic family medicine organizations to maintain the production of family physicians needed to increase primary care access to all Americans. We further recommend the combined authority of $306 million for all health professions programs, equivalent to the amount this subcommittee and the House passed last year.
In another measure of success, a GAO report stated that title VII was considered important in the creation and maintenance of family medicine departments, individuals, and medical schools. Another report stated that students who attended schools with adequately funded family practice departments and those with third year family medicine clerkships were more likely to pursue primary care careers.
Title VII has helped build much of this needed family medicine training infrastructure. A number of years ago my institution was awarded an innovative training grant to develop an academic community partnership with a network of rural clinics in a four-county health professions shortage area which was economically depressed and unable to attract and keep private physicians. That grant contributed to the development of set of self-sustaining rural clinics which now serve as teaching sites for residents and students who provide care, along with teaching physicians, to a population in need. This rural health exposure of family medicine residents has also resulted in the successful recruitment of many of our graduates to practice in these and other rural communities throughout our State.
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Mr. Chairman, some argue that since medicare, GME funds, residency training through GME, there is no need for title VII funding. This is not the case. Medicare GME funding is directed to hospitals to defray the basic cost of training residents. Most of the title VII family medicine funding is directed at medical schools to help develop the primary care infrastructure in those institutions. Only one-third of the Nation's family medicine residents receive title VII funding, which, unlike the GME funds, goes to programs to develop innovative curricula, linkages with community training opportunities, faculty development, and to maintain the fiscal stability of those departments of family medicine.
Studies underway indicate that the ratio of rural physicians to population, which has been declining steadily, is increasing for the first time in a half century. This change is almost entirely the results of an increased number of family physicians, which decreases the current rural physician shortages. However, sustaining these efforts is dependent upon adequate funding of family medicine training programs, of which title VII resources have been a critical part.
Also of great concern to the academic family medicine is funding of the Agency for Health Care Policy and Research, or AHCPR, which has a mandate to support primary care and practice-oriented research. We ask that, as you contemplate expanded levels of support for the NIH, that you include AHCPR in that support. While our country has invested in basic medical science research through NIH programs, there has been little support to develop clinical applications of these new basic science findings. In order to support the critical practice-oriented primary care research, we ask at least an additional $25 million be targeted for the Center for Primary Care Research at AHCPR.
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In closing, I would like to express my sincere thanks to this subcommittee and to Chairman Porter and to Congressman Bonilla in particular, who have championed health professions funding, and request your continued support and efforts.
Mr. PORTER. Dr. Hobbs, thank you very much for your testimony.
You're absolutely correct, Henry Bonilla has been a very, very strong advocate of the health professions, and I think the House has done a fairly good job of providing resources there.
This is just a word of advice, but I think we have to concentrate on the U.S. Senate on this one. [Laughter.]
When we go to conference, if their number is very low and ours is good, Dr. Lurie and Dr. Hobbs, you know, we don't necessarily end up at the stronger number. We will do our best. Henry has been a tireless advocate for the health professions, and I think that we'll have a decent opportunity within the limits of our allocation to do that here, but we need a little help on the other side of the rotunda.
Dr. HOBBS. Thank you, sir.
Mr. PORTER. Thank you, Dr. Hobbs.
[The prepared statement of Dr. Joseph Hobbs, M.D., follows:]
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[CLERK'S NOTE:—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
BRUCE BAGLEY, AMERICAN ACADEMY OF FAMILY PHYSICIANS
Mr. PORTER. Bruce Bagley, M.D., board member, American Academy of Family Physicians, representing the Academy. Dr. Bagley, thank you for being with us.
Dr. BAGLEY. Good morning, Chairman Porter. My name is Bruce Bagley. I'm a family physician from Albany, New York, and a member of the board of directors of the American Academy of Family Physicians. I appreciate your ability to move me on the schedule to follow Dr. Lurie and Dr. Hobbs because I think you're going to hear some very similar themes. We also have concerns about health professions funding and research.
On behalf of the 85,000 members of the American Academy, I'd like to speak to you this morning about three issues that are important to our patients. First is appropriations for section 747 of the Public Health Service Act for family practice training. Second is appropriations for the Center for Primary Care Research at the Agency for Health Policy and Research, and, finally, funding for rural health programs.
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I also want to thank the subcommittee, and particularly Mr. Bonilla and yourself, for your support in the past for higher funding levels for the health professions.
The academy strongly supports increased funding for section 747. It is the only Federal program that provides targeted funding for family practice training programs. We urge you to appropriate $87 million to section 747.
There's a shortage of generalist physicians. While most countries have at least a 50/50 split between generalists and subspecialists, the United States physician workforce is made up of more than 70 percent subspecialists and only 30 percent general physicians. Health planners believe that a physician workforce of at least 50 percent generalists and 50 percent specialists would best meet America's health care needs. Medicare policies currently provide incentives for hospitals to train physicians in subspecialties that are already in oversupply.
Family physicians are needed to care for the everyday health problems of the American people. A study conducted by KPMG Peat Marwick in September of 1995 reported that medicare spending could be cut by at least $49 billion, and possibly as much as $270 billion, over the next six years if today the ratio was 50/50 for primary care. Family physicians are distributed in the urban and rural areas in the same proportion as the U.S. population as a whole. Even so, 149 counties in this Nation, represent 550,000 individuals, have no physician.
Our track record is clear in this regard. Over 90 percent of physicians who complete family practice residency programs go on to provide frontline care for the citizens of this country where they need it.
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Section 747 works, as you've already heard. Funding for pre-doctoral programs under section 747 encourages medical schools to create required third year clerkships in family medicine. Clerkships are important because they expose medical students, who are mostly trained in hospitals, to real community practice.
The American Academy of Family Physicians also strongly supports a primary care research agenda within the Agency for Health Care Policy and Research. The U.S. health care system has little emphasis on cost-saving preventative care. We see limited medical resources being consumed trying to rescue people from long-term illness or poor health habits. While American medicine is praised worldwide for its excellence in biomedical research, we have often failed to translate these breakthroughs into practical treatment that will apply to all patients.
As you consider increases for the National Institutes of Health, and hear President Clinton's call for greater NIH funding, we ask that you also consider more dollars for AHCPR. This research will help me to better care for you and your family. The Academy requests that $50 million in additional appropriations be provided to AHCPR to support this crucial line of research.
Finally, the Academy supports increased funding for rural health programs to ensure that all rural Americans receive the same health care as urban dwellers. These appropriations will allow more of our citizens to have a personal physician to provide the care they need when they need it and where they need it. As family physicians, we care for America, and we need your help to attract and train young physicians for this important work.
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Thank you.
Mr. PORTER. I very much appreciate your testimony, Dr. Bagley. I think your point that, regardless of what we develop, if it can't be brought to people, it doesn't do any good at all, is a very, very good one, and we certainly will take that into account in marking up this bill and trying to do the best that we can to fund the programs that you have testified in behalf of.
Dr. BAGLEY. I'd like to follow up on Dr. Lurie's point that the rubber meets the road where the physician and the patient are in the doctor's office or in the community, and we really don't know whether many of the things that we're taught to do in medical school work well or not, or work as well as they could. So we're very anxious to see some good quality primary care research to help us do a better job every day.
Mr. PORTER. Thank you so much.
[The prepared statement of Bruce Bagley, M.D., follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
MARK WILSON, REPRESENTING HIMSELF
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Mr. PORTER. Mark Wilson, the Rebecca Luckens Fellow in Labor Policy at the Heritage Foundation, testifying in his own behalf. Mr. Wilson.
Mr. WILSON. Thank you, Mr. Chairman and members of the committee, for inviting me to testify on the appropriations for the Department of Labor. I'd like you to please accept my written testimony and enter it into the record. It should also be noted that my following testimony is my own view and does not necessarily reflect that of the Heritage Foundation.
In Fiscal Year 1998, the Department of Labor's discretionary budget authority was $11.3 billion. The largest portion of this, two-thirds, went to employment and training programs. In response to requests from President Clinton, Congress has substantially increased spending on these programs over the past two years. Since Fiscal Year 1996, for example, the appropriations for the adult training has increased 25 percent; summer youth training has gone up 39 percent; spending on programs for dislocated workers has increased 23 percent. Just last year, Congress also approved a new welfare-to-work program that will spend an additional $3 billion over the next three years.
Yet, despite these huge increases, and the best labor market conditions in the country in the past 25-30 years, the President intends to ask for even more spending on job training programs in Fiscal Year 1999. This year, before Congress appropriates any more funds for job training programs, it must ask itself a fundamental question: Why should we continue to spend taxpayer money on programs that don't work?
The few rigorous studies that have ever been done thus far show either a record of failure or disappointingly small and fleeting benefits that don't justify the cost of the program. Even worst, many agencies do not know if their programs are even working or not.
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Reforming the current Federal job training system must involve more than just consolidation, which the House has recently passed and the Senate is going to consider this spring. Job training programs must be rigorously evaluated at every level, Federal and State, to ensure that future tax dollars that will not be squandered on equally ineffective programs.
Congress and this committee should also exercise its authority under the Government Performance and Results Act to ensure that the Department of Labor includes a number of control group evaluation studies of job training programs that it administers in its strategic plan.
Over the past 30 years, thousands of local job training programs, as well as hundreds of billions of dollars have been spent. Yet, only a few dozen job training programs have ever been subject to rigorous evaluation. The few studies that have been conducted generally show a failure—or generally fail to show any significant long-term increases in hourly earnings directly related to the training. A comprehensive study published just this last December in The Journal of Economic Literature concluded that there is a lack of compelling evidence that skills-building activities in these programs have actually enhanced the skills of the participants that are of value to employers.
The only group helped by these programs apparently is adult women, and then only by a modest amount. The results for every other group, adult men and youth, are either nonexistent or negative.
In another study, Professor James Heckman at the University of Chicago concluded from his research that, zero percent is a much closer approximation to the true rate of return of these Federal job training programs than the 10 percent that the administrators profess they do.
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The General Accounting Office, sadly—again, most agencies cannot even verify whether their programs are working, let alone keep track of the people that are in them. The U.S. General Accounting Office in 1995, for example, found that almost 40 percent of Federal job training programs could not accurately count how many people they served each year, and most programs lacked outcome data. Less than 50 percent of the programs collected data on whether or not the participants obtained jobs after they completed the job training program, and only 26 percent collected data on the wage that those people earned. Only a handful of programs knew whether participants would most likely achieve the same job placement outcome without the program.
Despite the eloquent testimony of Anna Street earlier, a 1995 GAO study was unable to verify the job placement of 15 percent of the Job Corps sample that they had looked at, and found that over 22 percent of the Job Corps students dropped out of the program early. The high cost of the program, over $16,000 a year per student compared to $7,000 per year for a public college—that's room and board and tuition—and these disturbing results raise serious questions about whether or not Congress should continue to spend hard-working taxpayer dollars on this ineffective program.
As Congress begins to focus its attention on reforming Federal job training programs, it should consider implementing a few common-sense solutions to improve the effectiveness of these programs for both the participants and the taxpayers. We need to implement control group evaluation studies, rigorous performance measures at the State and national level. These types of studies will tell Congress and the States and the taxpayers which programs are working and which ones are not. Those we find that do work, we should take a look at whether they can be expanded. Those that don't should be eliminated. We need to close down the programs that don't work, and we need to vigorously implement—Congress should vigorously implement—the Government Performance and Results Act.
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Thank you.
Mr. PORTER. Mr. Wilson, let me agree with a great deal of what you said. In fact, the focus of this subcommittee since I've been chairman has been results for people. If you can't get results in your program for people, why are we funding it?
We have sent a letter this year to each of the Secretaries of the three departments over which we have jurisdiction and also all of the agencies over which we have jurisdiction, and told them that their testimony must focus on how their programs are working for people or not. That's exactly where we will be this entire hearing cycle.
We have also invited GAO to come in to testify in respect to the programs in each of the three departments separately, and to lay out for us exactly what their view is of the success or lack of success in the programs under consideration.
You, I think, are correct in saying that there's a lot of priority in the White House that differs from the priorities in the Congress, and when you come down to the final analysis, there's give and take in the conference, what will the President sign or what will he not sign, that we don't get a product that is necessarily just our view. We do the best, however, that we possibly can. The careers legislation has passed in the House of Representatives.
Mr. WILSON. That is correct.
Mr. PORTER. I believe it is not passed in the Senate yet.
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Mr. WILSON. That's correct.
Mr. PORTER. And if it is passed, that will change the whole outlook, I think, for job training programs and make them a lot more efficient and a lot easier to evaluate, since there will very most certainly be a lot fewer of them to start with. So I think we share all of those goals.
I will say, in respect to the Job Corps, that it is a high-cost program per individual, but it takes kids who come from places where drug use and crime and poverty is at its highest and brings them out of that atmosphere into an entirely different environment, one that many of them have never experienced before, and puts a good deal of them on a path that they would otherwise have no chance of reaching. I think under those circumstances we look at Job Corps in the same—what results are you getting?—as any other program, but I think we have to understand, in respect to that one at least, that there is a different set of circumstances, and there is a value to hope. There is some value to hope for people. It may cost more, but if we can get results, if we can take those kids out of those environments and put them into a work environment where they keep a job, raise a family, put their kids on the right track, I think we've probably achieved a lot.
Clearly, we share let's get results for people. I don't know when you were in here; you must have been here when Ms. Street testified, and I said to her, the line that you talked about proves itself with results; that's exactly what we're looking in every single Federal program, every single line item that we fund, we're looking for results. So we share your philosophy on that, and we'll do the best we can to achieve them.
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Mr. Miller.
Mr. MILLER. Thank you. I'm glad you're here today because we have very few people that raise questions. What studies are being done outside of the Department of Labor questioning the effectiveness and success of these programs? Maybe we need resources more into that. I know we require them to document their efforts.
Mr. WILSON. Some States are currently looking into the prospect of conducting their own studies. Texas is one, for example. There are a number of other States that are looking into the possibility of conducting their own control group evaluation studies to determine whether their programs that they run that are funded in part through JTPA currently are effective.
Most of the studies that have ever been done, and even the studies that are currently being done, have some Federal funding behind them in order to do them. These are not inexpensive studies to conduct. They're not expensive compared to the amount of money that we're spending, and the results that we have seen from these studies so far indicate that a lot of this money is being spent ineffective, and perhaps we should be evaluating. If we evaluated more programs, we could find those few that are working and build upon those, and more effectively spend our taxpayer dollars.
But there are no independent studies outside of the Department of Labor or for the States that are currently being conducted in this area.
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Mr. MILLER. Thank you. Thank you, Mr. Chairman.
Mr. PORTER. Thank you, Mr. Miller. Thank you, Mr. Wilson.
Mr. WILSON. Thank you, Mr. Porter.
Mr. PORTER. We appreciate your testifying.
[Prepared statement of Mark Wilson follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
TERRY-JO MYERS, INTERSTITIAL CYSTITIS ASSOCIATION
Mr. PORTER. Terry-Jo Myers, Interstitial Cystitis Association national spokesperson, testifying in behalf of the Association. Ms. Myers, we're delighted to welcome you back——
Ms. MYERS. Thank you.
Mr. PORTER [continuing]. To our witness table. We're also delighted that you won twice last year on tour. That was very exciting. I'm a great fan of the LPGA. In fact, I have tickets already for the open at Black Wolf Run——
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Ms. MYERS. Fantastic.
Mr. PORTER [continuing]. Up in Wisconsin. I have a son that happens to live about 25 miles away from there. So I'm going to be there the whole week.
Ms. MYERS. I could have gotten you tickets.
Mr. PORTER. Yes. [Laughter.]
Ms. MYERS. Maybe I couldn't have.
Mr. PORTER. Exactly. [Laughter.]
Ms. MYERS. You just buy them.
Mr. PORTER. Well, let me say one other thing. We understand that you're going to receive the Ben Hogan Award this year.
Ms. MYERS. Well, you're spoiling my whole speech.
Mr. PORTER. I shouldn't talk about that?
Ms. MYERS. No, go ahead. [Laughter.]
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Mr. PORTER. Well, we just think that that is absolutely wonderful. We understand that they weren't going to award this award this year because of Ben Hogan's death, but that the comeback that you have achieved in overcoming this disease and getting a chance to exhibit your talent has turned them around, and that you're going to receive this award at the Masters' Tournament.
Ms. MYERS. Yes.
Mr. PORTER. So we congratulate you on that. We're delighted to have you back before our subcommittee to testify, and we wish you tremendous success on the tour this year.
Ms. MYERS. Thank you. Thank you. I hope I don't sound repetitive now.
Again, thank you for giving me the opportunity to present my testimony here today. I would like to tell you about interstitial cystitis and ask you for continued funding of research to find a cure for this painful and debilitating disease.
My name is Terry-Jo Myers, and I am a professional golfer, completing my 13th year on the LPGA tour. I also have IC.
While today and every day I appear healthy to anyone who meets me, that is because the effects of interstitial cystitis are not visible to others. I can, however, assure you that my work, my family, and social life, and my pursuit of my dreams, have all been dramatically affected due to IC.
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Many of you may already know that my IC story has a happy ending, for I have been able to find relief. I'm here to give a voice to all those IC patients who are still too ill to leave their homes and cannot speak to you today.
Interstitial cystitis is a chronic, inflammatory bladder condition. Its cause is unknown and there is no uniformly reliable treatment. The symptoms, which can be severe and unrelenting, include urgency and frequency of urination, up to 60 times in 24 hours, and pain in the bladder. And the pain I describe, it feels like I would have had papercuts lining my bladder wall. It was quite painful.
I was diagnosed with IC shortly after I developed symptoms at the age of 21, and I was told that nothing could be done. Doctors said, I would just have to learn to live with the pain, and that's the prescription that far too many IC patients still receive.
Every step I took was painful, and for a tour player it was torture. Often, I could not even bend down to line up a putt. I would have to go to the bathroom as often as 50 times a day, including 15 to 20 times a night. I played in nonstop pain, and had constant anxiety about being able to make it to the next bathroom. Because travel is especially difficult for many people with IC, I would often arrive at tournaments exhausted; my friends would be out playing their practice rounds, and I would often be forced to remain in the locker room.
The saddest of all for me personally is that IC has affected my golf game. As a junior athlete, I won many tournaments, but as a professional with IC, my performance was terribly hindered by the disease. Because LPGA rules prohibit players from leaving the course for any reason, I had to withdraw from many tournaments in the middle of a round because I needed to get to a bathroom. In 1988, I won the Mayflower Classic, but I attribute much of that win to the fact that we had two rain delays in the final round that allowed me to get to the bathroom and keep playing.
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I'm very happy to report that last season, as you've already mentioned, I did win the Los Angeles Women's Championship, as well as the Sara Lee Classic, finishing the season with over $300,000 in earnings, and I attribute much of that success to the oral drug Elmiron, which was recently approved by the FDA for marketing. Unfortunately, Elmiron provides relief in only about a third of the IC sufferers who try it.
For me, last year was a dream come true. My story appeared in many newspapers and magazines across the Nation. I was featured in People magazine. I appeared on countless television shows to share my story of success.
The most gratifying result of all this publicity beyond my own sense of achievement was the fact that the Interstitial Cystitis Association, the ICA, was able to reach out to more IC sufferers than ever before.
In mid-December, I received the Heather Farr Award at the LPGA 1997 awards luncheon. This award, voted on by tour players, recognizes a player who demonstrates determination, dedication, and spirit through the game of golf. Heather Farr, who was a close friend of mine, died of breast cancer in 1993 at the age of 28. As I told The New York Times, I never told Heather that I had IC, but watching her fight cancer helped me to continue my fight against IC. She fought her battle very public, and she was never angry or bitter, and I guess I just borrowed some of our strength. For that reason, that award is especially meaningful to me.
And as if that weren't enough gratification for any athlete, earlier this month I did receive a letter from the Golf Writers' Association of America indicating that I had been voted the Ben Hogan Award. This award is presented annually to someone who has continued to be active in golf, despite a physical handicap or serious illness. This beautiful bronze statue of Mr. Hogan has been awarded to such golf heroes as Ken Venturi, Lee Trevino, and President Eisenhower. I will be attending the awards dinner in Augusta on Wednesday, the eve of the Masters' Tournament in April.
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Although I am immensely grateful for my reclaimed success, there are many, many others who have not been as fortunate. I have had IC for 14 years. It's been only six years since I was able to find a doctor to help me. This doctor has put me in touch with the ICA and motivated me to take steps to begin to cope with my illness. This doctor was also aware of Elmiron and made sure that I was able to take the Elmiron.
Not all IC patients can say this. Many can't travel, work, or meet their family obligations, and many become financially destitute as they lose their health insurance coverage and try to keep up with their IC treatment. Some have their bladders removed, only to encounter a whole array of medical problems.
My success story is not one that all IC patients can claim, and that is what motivates me the most. Because it is comparatively a rare disease that affects mostly women, and historically neurology and neurological research have focused primarily on male urological problems, interstitial cystitis is a disease that continues to be ignored by many members of the medical community. It is serious and it can be costly.
An epidemiological study, sponsored by the Urban Institute, found that an estimated 450,000 people in the U.S., men and women both, may suffer from IC, with an economic impact as high as $1.7 billion per annum.
Fortunately, there is hope. Thanks to previous congressional funding, the NIDDK built the IC database, an extensive pool of IC patient information collected at nine sites around the U.S. and stored and analyzed at the Pennsylvania State University Hershey Medical Center. The researchers have already begun to publish reports analyzing data obtained from this study, with the expectation that the database will provide clues as to how IC develops and to diagnose and categorize patients and how to treat their disease more effectively. In short, the database has provided the first systematic, long-term look at a large number of IC sufferers.
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Thanks to your support, the IC database is now moving into phase two, which will test and study new treatments for IC. The Interstitial Cystitis Association and all IC patients are very grateful to all members of this subcommittee, and in particular, to Chairman Porter and Congressman Bonilla, your ongoing support, your support of the IC research and other urological diseases. Without your help, we would be nowhere in our struggle. Because of your commitment, we are beginning to see some progress.
In conclusion, to continue this research initiative, we request that the committee provide additional funds to the urology program of the NIDDK in Fiscal Year 1999 to be used for expanding the variety of investigators doing research on IC. These funds should be used to support further research specifically into IC. Proposals should be solicited through a series of requests for applications, RFAs, for individual research grants and pilot studies which would look into, one, new strategies for IC symptom relief; two, epidemiology, and, three, further understanding the basic science of IC.
The committee requests that the NIDDK prepare a report of ongoing research studies and areas for research solicitations, demonstrating where advances can be made in the effective treatment and prevention of IC. We still have far to go; yet, we are confident that with your help, and with adequate continued funding for IC research through the NIDDK, results will be no less than miraculous.
As a victim of IC, I know what it is like to endure the chronic, unrelenting pain, and please help us to end this suffering and help us to find a cure for this horrible disease.
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Mr. PORTER. Thank you for coming to testify before our subcommittee once again. We had earlier this morning David Hyde Pierce. I don't know whether you got a chance to see him. That's Dr. Niles, Frasier——
Ms. MYERS. No.
Mr. PORTER [continuing]. Co-star of the Frasier series. We said to him that people who are in the public eye, celebrities like yourselves, really do a wonderful service in focusing this country on these kinds of problems. He testified on Alzheimer's disease which affected his family.
I want to commend you for standing up and riveting public attention on this disease and what we can do to help other people that have it.
Ms. MYERS. Thank you.
Mr. PORTER. Obviously, you don't have to do that, but you're making a difference in others' lives, and we appreciate that very much.
Now should Casey Martin be able to ride in the cart or not? [Laughter.]
Ms. MYERS. Yes, I think he should be able to ride in a cart, absolutely.
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Mr. PORTER. Is that the feeling on the tours, that that's okay?
Ms. MYERS. I would go out on a limb and say that is the feeling of the players, yes. If he is good enough to play golf on a professional level such as the PGA tour, I would never deny him the right to play.
Mr. PORTER. Then why shouldn't you have been allowed to leave the course?
Ms. MYERS. I was not as smart as Mr. Martin. I did not think about that. However, it's a very interesting situation, his lawsuit.
Mr. PORTER. Yes.
Ms. MYERS. I will follow it.
Mr. PORTER. It's ready for trial or starting trial very soon, is it not?
Ms. MYERS. February 2.
Mr. PORTER. Yes, yes.
Ms. MYERS. Yes.
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Mr. PORTER. Mr. Bonilla.
Mr. BONILLA. I'd just like to, very briefly, second what the chairman said about your appearance here and your appearance in previous years, you as a person. It's admirable that you're what you're doing and taking all this time. You've got a lot of success now. You could be doing a lot of other things, working on your game, traveling around the country——
Ms. MYERS. I do need to do that.
Mr. BONILLA [continuing]. And I know that's important, but the fact that you take personal time as a volunteer to come here to help those that may be affected in the future by IC is really a testament to you as a person. I just think that should be pointed out again.
Ms. MYERS. Thank you. I will never let myself forget the pain and all of the anxiety, that I lived with this disease for the 11-plus years that I was in so much pain. If I allow myself to forget that, then I may not take the responsibility I need to take with this disease.
Mr. PORTER. Ms. Lowey.
Mrs. LOWEY. Thank you, Mr. Chairman. I want to join our chairman and my colleague in welcoming you here, and associate myself with the remarks that you've heard, how important it is to be an advocate. I want to particularly welcome a constituent of mine, Laurie Fishfein, who is also here, whose daughters have suffered greatly from the disease.
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We're aware that this does affect primarily women——
Ms. MYERS. Yes.
Mrs. LOWEY [continuing]. And we join you in your optimism that we can end in the pain, we can find a cure, we can prevent the suffering that so many people go through.
I just want to assure you that there is a great deal of support in this committee, and that your personal testimony and that of Mrs. Fishfein and others does make a difference. We are often pulled in so many different directions, and I am very pleased that there seems to be in this Congress, in this country, great support for the National Institutes of Health.
Ms. MYERS. Yes.
Mrs. LOWEY. We can assure you that we're going to work to increase those dollars, increase the dollars for research for this disease, and we thank you again for your participation here this morning.
Ms. MYERS. And thank you for your tremendous support. Thank you.
Mr. PORTER. Thank you, Ms. Lowey.
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Now have you played the River Course at Black Wolf Run?
Ms. MYERS. No, but I've watched the Anderson Consulting Match Play. I've watched it very carefully.
Mr. PORTER. Well, you'll love this course, and it might be a great place to win your first U.S. Women's Open.
Ms. MYERS. That would be fabulous, and remember, you bought the tickets.
Mr. PORTER. I did; I'll see you there. [Laughter.]
Thank you so much for being with us.
Ms. MYERS. Thank you, Mr. Chairman. Thank you.
[The prepared statement of Terry-Jo Myers follows:]
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
"The Official Committee record contains additional material here."
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Thursday, January 29, 1998.
WITNESS
ERIN BOSCH, PRIVATE CITIZEN, REPRESENTING HERSELF
Mr. PORTER. Erin Bosch, a private citizen, testifying in her on behalf. Ms. Bosch, it's nice to welcome you back again.
Ms. BOSCH. Thank you.
Mr. PORTER. Thank you for testifying.
Ms. BOSCH. Mr. Chairman, members of the subcommittee, I'm honored to have the opportunity to speak to you today. My name is Erin Bosch, and some of you may recall that I addressed you last year on behalf of the National Coalition for Heart and Stroke Research. Today, I'm here to represent not only myself, but the 32,000 children in the United States who are born with congenital heart defects.
Most of us are aware that heart disease is the No. 1 killer and a leading cause of disability in adults in this Nation, but few recognize that heart defects are the most common birth defect of the newborn. Of the 32,000 children born each year with heart defects, around 2,300 die before their first birthday. The rest of us live with the consequences of heart disease, and many have their lives cut short from heart failure.
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Thanks to past funding for heart research, about 1 million Americans who were born with heart defects are alive today. While we are grateful for each day to be alive, we, unlike other healthy children, have not been able to experience what it's like to run the length of a soccer field without struggling for our next breath, nor have we experienced the thrill of running down the basketball court to score the winning basket.
I was born with genetic heart disease, called hypertrophic obstructive cardiomyopathy. This disease has caused the heart muscle to overgrow and block the flow of blood in and out of my heart. It also affects the valves of my heart, causing the blood back up in the wrong direction. This diseases causes high risk for heart attack and sudden death from dangerous heart rhythm.
One year ago in October, I was at the Mayo Clinic having open heart surgery. This procedure, called a septal myectomy, is designed to shave away a portion of the heart muscle that causes the obstruction. This procedure was originally pioneered at NIH's National Heart, Lung, and Blood Institute, and was my last resort, aside from transplantation.
It is funding that this committee has provided that has allowed this type of successful research. Without this funding, my option of a healthier lifestyle would not have been possible for me. I'm one of the lucky ones. My surgery was successful, and after one month at Mayo, I was able to return home.
There have been some advances for children like me, although many still die prematurely. Most people think heart disease is a problem that only affects older people, but I'm living proof they are wrong.
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According to recent studies, 36 percent of young athletes who die suddenly have undiagnosed hypertrophic cardiomyopathy. Presently, there are at least 35 different types of recognized congenital heart defects affecting the newborn population. Some can be corrected surgically; others cannot yet be repaired, and these children die. One of these children might one day be your child or grandchild.
I have great faith in the determination of our scientific researchers who work day and night to find new treatment methods for those who suffer with illness or disease. I also have great faith in you as doorkeepers of governmental funding for the National Heart, Lung, and Blood Institute to provide the necessary funds for children who, through no fault of their own, have been born with heart defects.
Thank you for the opportunity to speak to you today. I'm confident that you will not forget me and the other young people like me who depend on you for funding for this vital research. We, too, desire to live long and productive lives.
Mr. PORTER. Ms. Bosch, thank you for your very compelling testimony, and I think I can assure you, on behalf of the whole subcommittee, that we definitely will not forget you and other young people, and we'll do our very best to put this funding into high priority and to make the kinds of increases that can really make a difference in people's lives in the future.
Thank you for coming here to testify.
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Ms. BOSCH. Thank you.
[The prepared statement of Erin Bosch follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
JUDITH DESARNO, NATIONAL FAMILY PLANNING AND REPRODUCTIVE HEALTH ASSOCIATION
Mr. PORTER. Judith M. DeSarno, president and CEO, National Family Planning and reproductive Health Association, representing the National Family Planning and Reproductive Health Association.
Ms. DESARNO. Good morning. My name is Judith DeSarno, and I am the president and CEO of the National Family Planning and Reproductive Health Association, a nonprofit membership organization dedicated to promoting and protecting access to family planning and reproductive health care for all women, men, and their families.
Thank you, Chairman Porter and members of this subcommittee, for affording me the opportunity to testify before this subcommittee. I would like to concentrate my remarks on increased funding for title X, our National Family Planning Program.
This program was founded 27 years ago to help lower unintended pregnancy rates and the lower the incidence of infant mortality and morbidity. I am here today with good news: that the rate of unintended pregnancy in the United States has begun a well-documented decline. According to the latest data analysis from the Alan Guttmacher Institute, the rate of unintended pregnancies fell by 16 percent between 1987 and 1994. This drop has been attributed largely to higher contraceptive prevalence and the use of more effective methods of contraception. The decline in unintended pregnancies has also lowered the abortion rate. This is all very good news. Family planning works. One can only wonder how much greater a decline there would be if every woman who wished it were able to have access to affordable, reliable contraception.
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The administration will be affirming its commitment to title X by requesting an additional $15 million for the program in its Fiscal Year 1999 budget. While title X has received small increases in recent years, thanks in large measure to your leadership, Mr. Chairman, and the strong support and leadership of Mrs. Lowey and Ms. Pelosi, funding has not kept pace with inflation or need. If title X funding had kept pace with inflation since 1980, it would today be funded at almost $500 million instead of its current funding level of $203 million.
Unfortunately, health care costs did continue to rise. For example, in just the last five years, the cost of oral contraceptives, the most popular method of reversible contraception in this country, has tripled for virtually all title X clinics.
If one patient desires Depo-Provera, an IUD, or Norplant, the most effective and long-lasting contraceptives, many other patients may go unserved because of the high cost of these methods.
Title X family planning professionals are being asked to do more with fewer resources. The increase of $15 million would allow us to provide many more women and men with family planning services; expand outreach efforts to reach hard-to-reach populations such as the homeless and the drug-addicted; expand weekend and evening hours to make services more accessible to patients; expand programs to involve males, who, after all, are half of the equation; provide more screening and treatment for sexually-transmitted diseases.
Family planning works. We know that postponing that first birth beyond the teenage years and allowing families to space their children is the most important precursor to healthy children and families.
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We know that increased access to contraception is bringing down the unintended pregnancy rate and the abortion rate.
We also know that we must all work together to lessen the need for abortion. I am here today to urge this committee to join all people concerned with the health of women and their families—abortion supporters and abortion opponents alike—to join us in making sure that all women have the opportunity to plan their pregnancies.
Mr. Chairman, we have the dramatic news this morning that there was a bombing at a women's clinic in Birmingham today with at least one person dead. We must end the violence. We must stop demonizing personal choices, and we must work together to find preventive measures.
Thank you.
Mr. PORTER. Ms. DeSarno, thank you for your testimony. I couldn't agree with all of it more. It is good news that unintended pregnancies are down in the United States. It would be even better news if they were down all across the world.
Ms. DESARNO. I think it's important to note that the United States still has, in the industrialized nations, the highest unintended pregnancy rate. So we're not really——
Mr. PORTER. We're not there yet.
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Ms. DESARNO [continuing]. Doing enough in this country either.
Mr. PORTER. I've just learned of a new program called Educate America that has enlisted Charlton Heston, Edward James Olmos, Morgan Fairchild, and others, and is intending to bring the message of the importance of family planning and contraception back to the American people, where it seems to have been missing for such a long time. Are you aware of this?
Ms. DESARNO. I am not aware of it. That's very good news, Mr. Chairman.
Mr. PORTER. Well, I think it is the kind of thing that is really needed. In my judgment, there is a concerted all-out attack on family planning that in a way hides behind the issue of abortion that I think is unrelated. Abortion is not an acceptable method of family planning, in my judgment. Contraception is what we should emphasize, and yet we have got these issues bound together, very unfortunately. I think that those who believe that family planning is a personal human right for every father and mother and family really have to focus on this, and this Educate America program seems to me to be a way to do that.
Edward James Olmos is a personal friend. He's stood up for many causes that he believes in, including innercity kids who are highly at risk in our society, and reached out to them. I think this kind of leadership from celebrities—we've had a couple of celebrities here today—but I think it can make the difference in respect to family planning as well, and I would urge you to give them all the support you possibly can.
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Ms. DESARNO. Oh, absolutely. We know that the American people, by an enormous percentage, support family planning. Ninety percent of Americans polled say they support family planning, and a majority also support Federal funding for family planning.
For years, I have felt that we need to undemonize or take out of the political rhetoric family planning. I know that Members of Congress often reflect where they think their constituents are. Their constituents strongly support family planning, and it seems like a step in the right direction. Title X is there ready to serve all those many women who have no access to family planning, if we can get that funding up.
Mr. PORTER. Looking at how close the votes have been on title X indicates that the message isn't getting through from the constituents to the Members. We've got to do a much better job of that.
Ms. DESARNO. I absolutely agree.
Mr. PORTER. Thank you for your testimony this morning.
Yes, Ms. Lowey.
Mrs. LOWEY. Thank you, Mr. Chairman, and I just want to associate myself with your remarks, and thank you for coming before us today. I'm particularly pleased that you emphasized that family planning works.
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I do hope, Mr. Chairman, that those of us who are pro-choice, those of us who are anti-choice, can unite and work together to focus on the importance of family planning. You mentioned, and I'd just like to emphasize again, that family planning reduces the need for abortion. Whether one is pro-choice or anti-choice, we all agree that we have to reduce the need for abortion.
I know in this committee many of us are focused on increasing investments in contraceptive research, providing access to women to contraceptives, so they can plan their own families. I'm also hoping that the responsibility of other committees—that we can all work together to make sure that the insurance companies provide coverage for contraceptives if, in fact, they provide coverage for other prescription drugs.
So the focus should be on contraceptives, family planning, and I am cautiously optimistic that we can convince our colleagues to continue to increase our investment in contraceptives and family planning, because this really has to be the key to preventing unintended, unwanted pregnancies.
I thank you again for your important work. We look forward to working with you.
Ms. DESARNO. Thank you, Ms. Lowey. No one has done more on the complete answers to preventing unintended pregnancy than Mrs. Lowey, and I salute her for that.
If we'd had longer than five minutes, I have a statement of increasing to $20 million research for contraceptive research. We must—the challenge for all of us, pro-choice or anti-choice, is to work together to lessen the need for abortion. I think it's a moral imperative for all of us.
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Thank you.
Mr. PORTER. Thank you, Ms. DeSarno.
[The prepared statement of Judith DeSarno follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. This subcommittee will stand in recess for five minutes.
[Recess.]
Thursday, January 29, 1998.
WITNESS
SUSHMA D. TAYLOR, CENTER POINT, INC.
Mr. PORTER. The subcommittee will come to order.
Sushma D. Taylor, Ph.D, executive director, Center Point, Inc., representing Center Point, Inc.
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Ms. PELOSI. Mr. Chairman.
Mr. PORTER. Oh, I'm sorry, Ms. Pelosi. I'm sorry.
Ms. PELOSI. Thank you, Mr. Chairman. Mr. Chairman, before I introduce our next witness, I did want to mention, for your comments about the title X—it seems a long time ago, but it was five minutes ago, the previous witness. Following up on that, I was very encouraged by your remarks, and of course they are a reflection of the great leadership that you have demonstrated on this issue, both domestically and internationally. So as a member of your committee, once again, I'm proud of you as my chairman——
Mr. PORTER. Thank you.
Ms. PELOSI [continuing]. And I thank you very much for your very, very unequivocal and strong statement in support of family planning.
I also appreciate the opportunity that you are allowing me in welcoming and introducing Dr. Sushma Taylor, a CEO at Center Point. Dr. Taylor's program serves the San Francisco Bay Area and specializes in substance abuse treatment services for women and children, the homeless, adolescents, those with HIV, including some involved in the criminal justice system.
Dr. Taylor has long been a pioneer in the field of treatment. As one who believes that treatment is a very appropriate route for us to go to reduce demand in our country, demand for doing drugs in our country. I appreciate and support her approach, and I am pleased to welcome here today, on behalf of the committee, Dr. Taylor, and we look forward to your remarks.
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Thank you, Mr. Chairman.
Mr. PORTER. Thank you, Ms. Pelosi.
Ms. TAYLOR. Thank you, Ms. Pelosi. That's extremely generous, gracious, as ever. You've been such an advocate for women and for the dislocated, for the poor, and on behalf of all of them, I thank you for your continued work.
Ms. PELOSI. Thank you.
Ms. TAYLOR. Mr. Chairman, thank you for the privilege of being here today. I serve as the CEO at Center Point, a provider of comprehensive health, social, vocational services to high-risk families and individuals. I also appear on behalf of my colleague, Dick Steinberg, president of WestCare, who provides programs in Nevada and California and Arizona.
Our programs offer treatment and rehabilitation that interrupt abusive addiction cycles. Our organization, in existence for 28 years, has expanded, and we currently serve 5,000 clients per year in diverse health, social, addiction, treatment, and vocational services.
Center Point and WestCare both believe that there's extraordinary potential in the most ordinary person, and our clients visibly demonstrate that change is possible and that adversity can be overcome. The clients we serve overcome domestic violence, homelessness, sexual abuse, unemployment, substance use disorders, and infectious diseases such as tuberculosis and the devastating HIV/AIDS. They become proud, productive members of our community.
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We have, Mr. Chairman, that the President's Fiscal Year 1999 budget request for SAMHSA may contain a $200 million increase. Center Point and WestCare respectfully ask that this additional funding be shared between the substance abuse block grant and the knowledge development application program, thereby enabling the expansion of innovative approaches to treatment.
We would like to emphasize that the KDA efforts are worthwhile, and they refine our understanding of what works in controlled treatment settings. An investment in knowledge development and application will work to enhance cost-effectiveness of the entire substance abuse treatment field.
You're interested in studies and results. In 1997, the Center for Substance Abuse Treatment revealed the entire study of 5,700 clients one year after treatment. There was a 55 percent reduction in drug and alcohol use, a 77 percent decrease in violent crime, a 19 percent increase in employment, and an 11 percent decrease in welfare costs. Treatment pays; it pays great dividends.
We also believe in the development of educational, vocational, and interpersonal skills that we encourage in our programs. We hope that you, through your committee, will charge the Department of Labor to continue to provide vocational assessment and job training for people who make the difficult transition from welfare to work.
We encourage the subcommittee to engage the Department of Labor and Education to work with community-based organizations which have successfully infused employment-related skills into their treatment programs, and also as they begin to design welfare-to-work curriculums.
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Another one of our goals is to provide cognitive behavioral and psychosocial skills which are aimed at enhancing personal responsibility. The National Center on Child Abuse and Neglect has recognized the role that parental substance abuse and domestic violence can play in child abuse and neglect. Domestic violence and treatment programs need to be an essential component to any effort to improve the quality of life for all of the families that are afflicted by substance abuse and concomitant disorders. We ask the subcommittee to encourage the Administration for Children and Families to engage agencies such as the CDC to continue to fund demonstration projects that recognize the correlation between substance abuse and domestic violence.
We further urge the committee to engage programs such as the Bureau of Primary Health Care's health care for the homeless program, because these programs allow homeless individuals to access primary health care needs in a more cost-effective manner than emergency rooms. They need to stabilize their health conditions before they can engage in treatment.
Finally, Mr. Chairman, Center Point and WestCare are pleased that the National Institute on Health is beginning to reconsider research protocols and that now the grant review procedures will be based on the quality of the science and the impact that it might have on the field, rather than on the details of technology or methodology.
Mr. Chairman, Ms. Pelosi, on behalf of WestCare and Center Point, thank you for this opportunity. But more than that, we thank you on behalf of the families we serve for your leadership, your generosity, your dedication. Your actions do make a difference in the lives of the most dislocated people in our communities, but also those who have hope because of your leadership. We hope that you will continue to fund these programs that make them become productive human beings.
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Mr. PORTER. Dr. Taylor, thank you very much for your testimony.
We have a facility in my district in Waukeegan, Illinois that sounds very similar to your Center Point facility. There's others, and of course I have visited it and seen the good work that it does for people that have tremendous problems in their lives and get involved in drugs and see no way out. There's other programs in Chicago that I visited also, and they are apparently very similar to what you do. So we, I think, understand the importance of this funding.
In the President's budget, the increases in discretionary funding are largely supported by proposed revenue increases mostly—not solely, but mostly—coming from the tobacco settlement. The difficulty, of course, is going to be: are we going to see a tobacco settlement this year? Is that going to be in the budget? I think, very frankly, it's a wonderful idea, particularly in reference to health care and health research funding, to have our tobacco industry share more in those costs and would be supportive. But I don't know that this is ever going to materialize. So we're going to have to see whether these problematical revenue increases are going to be there, and in the meantime, we're going to have to do the very best we can within the resources we actually are allocated, whatever they may be, to prioritize.
That's another short sermonette for today, but I think we've got to put the thing in perspective.
Ms. TAYLOR. We know that funding is tight, and we also know that you have difficult choices and conflicting needs. We just ask you to remember with your hearts the people that do suffer, as you do every year, and as you make those difficult choices.
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Mr. PORTER. Thank you so much.
Ms. Pelosi.
Ms. PELOSI. Thank you. In the interest of time, I will be brief, Mr. Chairman, but I appreciate your interest in Dr. Taylor's testimony.
Dr. Taylor, I'm sure you realize that $200 million in the current budget environment is a great deal to request. Can you briefly give just a little justification as to why that figure is the appropriate number?
Ms. TAYLOR. Ms. Pelosi, for the last five years, there's been cuts in the treatment dollars going toward substance abuse, as the problems have been expanding. Treatment does pay. The California study indicated that, for every dollar invested in treatment, there are seven dollars in benefits that are saved in health care costs, in traffic fatalities, and criminal justice costs. As we continue to make a large investment in criminal justice, we must think about a cost offset, and substance abuse treatment can do that. Two hundred million dollars may sound like a lot, but across the country, with the number of people that are on waiting lists for treatment, it doesn't go very far.
Ms. PELOSI. I appreciate that. Doctor, could you just briefly explain way the KDA grant, as opposed to a block grant, tends to be a more innovative and effective approach?
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Ms. TAYLOR. The block grant goes to the States and allows the States to add infrastructure development and new programs, as well as to maintain their own. The knowledge development application allows the Federal Government to offer a rapid response to jurisdictions that are hit with emerging epidemics. For instance, in the Northeast corridor, the drug of choice is heroin, but in California, Ms. Pelosi, as you are aware, the drug of choice is methamphetamine, particularly affecting young people. Therefore, if the Federal Government was to have a uniform response across the country, some jurisdictions would not have the flexibility for either rapid mobilization of essential resources or target-specific mobilization, and the knowledge development application resources allow that.
Ms. PELOSI. Thank you very much, Dr. Taylor, for your testimony, for your answers, and for your leadership on this important issue.
Ms. TAYLOR. Thank you so much.
Ms. PELOSI. Thank you, Mr. Chairman.
Mr. PORTER. Thank you, Ms. Pelosi. Thank you, Dr. Taylor.
[The prepared statement of Sushma Taylor follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
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GAIL H. CASSELL, AMERICAN SOCIETY FOR MICROBIOLOGY
Mr. PORTER. I want to at this point apologize. We have nine witnesses remaining. We are at seven minutes of 12:00. Obviously, we're running very substantially behind. Partly, that's due to the fact that we've had several celebrity witnesses and have taken longer with them and have caused ourselves to come behind. I'm going to try to keep us—if we allocate just five minutes, we're going to run until 20 minutes of 1:00 as it is. So I'm going to try to keep us on our time targets as much as we possibly can for the remaining witnesses, with an apology that it certainly wasn't intended to squeeze your time, because your time is just as important as anyone else's, but we'll do it as quickly as we can.
Dr. Gail H. Cassell, past president of the American Society for Microbiology, Chair, Public and Scientific Affairs Board, and director of infectious diseases research at Lilly Research Laboratories, Indianapolis, Indiana, testifying in behalf of the American Society of Microbiology. Dr. Cassell, welcome.
Ms. CASSELL. I'd like to start out, Mr. Porter, by thanking you for your previous commitment to biomedical research and support for NIH, and to just say that this previous investment, as you probably are aware, has resulted in enormous benefit and improvement of human health, particularly in the area of infectious diseases. It has resulted most recently in technologies to allow us to completely sequence the entire genome of infectious agents. As a result of this, it's led to new targets for development of new antibiotics, new candidates for vaccines, as well as new diagnostics. As you will see in the remainder of the testimony, this becomes all important in today's world of infectious diseases.
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Having said that, and also to point out that this investment, as you are also aware, not only has resulted in improvement of health, but also continues to improve and contribute to the economic prosperity of the country. Having said all this, however, the American Society for Microbiology as many congressional leaders, as well as individuals, believe that the Federal Government is not making a sufficient investment in biomedical research. We would like to see this increased. Therefore, we do support a doubling of investment in research, and along those lines, would support a 15 percent increase in the budget of NIH for this year.
We feel that we can best make the case for encouraging you to support this increase by using infectious diseases as an example. While I'd like to be very informal about this, in line with your desire to keep on time, I'll direct my comments to my written comments, but would be happy to answer any questions.
As you are well aware, each day headlines not only in the national news, but also international news describe new diseases that are rapidly arising worldwide and old diseases that are re-emerging as infectious agents evolve or spread, as changes occur in ecology, socioeconomic conditions, and population patterns.
Humans, through rapid world travel and unprecedented trade, can transport disease from one country to another today often in less than 24 hours. Infectious diseases not only are spread from human to human, animals to humans, but also, as you are aware very acutely, I'm sure, there is a tremendous threat from bioterrorism today. This, too, directly involves manipulation of infectious agents. So threats posed by infectious diseases not only to our well-being, but also to now national and world security are apparent.
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What I would like to emphasize is something that you may not be aware of. Most people, when you tell them that infectious diseases are the leading cause of death worldwide, it is already known by them because most of these diseases occur in developing countries. What you may not be aware of is that infectious diseases, as of last year, became the third leading cause of death in the United States. Many people would immediately respond, ''Aha, HIV.'' I would point out to you that this increase in infectious diseases and death, however, are related to pneumonia in otherwise healthy individuals, as well as a significant increase in bloodstream infections.
In fact, what many people also may not be aware of in this increased age of technology is that, since 1980, deaths due to infectious diseases in this country—again, not to HIV alone, but to the conditions that I've mentioned—have increased by almost 60 percent. These are data published last year by the Centers for Disease Control.
Antibiotics are now failing, as you probably have heard, to control common diseases such as bacterial pneumonia. In fact, last week a series began on CNN emphasizing the problems that we currently face with almicrobial resistance, and in fact this series will continue. Ninety percent of the strains of staphylococcus aureus, which is one of the most common disease-producing organisms in humans, are resistant to penicillin and other related antibiotics. The incidence of vancomycin-resistant strains of enterococcus, an organism that both you and I, and everyone in this room, normally carries in their intestinal tracts, but which is the most common cause of infections in hospitalized patients, the antibiotic resistance to this organism has increased twentyfold just since 1989.
As you are well aware, because of the publicity, food-borne diseases are responsible now for over 30 million illnesses in the United States with over 9,000 deaths being due to infectious diseases, and this is only the tip of the iceberg with regard to food-borne disease.
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Additional research is needed urgently to better understand the pathogenesis of these organisms, as well as hepatitis C, that we now know has a direct link to liver cancer.
We would say that the financial burdens of infectious diseases are staggering. Approximately $120 million or 15 percent of all health care expenditures are related directly to infectious diseases in this country.
I will pass by some of my other comments because of the interest of time. I will just say that, in conclusion, ASM realizes the difficulty of achieving the goal of doubling the NIH budget over the next five years under the current spending limits, but we certainly encourage you to significantly increase the resources, particularly in light of the problems that this country and the world face with regard to infectious diseases. We would urge you not only to take this into consideration with respect to NIH, but also the Centers for Disease Control, which also plays a very important role in this regard.
I appreciate the opportunity to tell you this directly.
Mr. PORTER. Dr. Cassell, we definitely do hear you.
Ms. CASSELL. Okay.
Mr. PORTER. These are very serious concerns, and your testimony has highlighted them for us, and we appreciate your coming to testify today.
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Ms. CASSELL. Thank you.
[The prepared statement of Gail H. Cassell follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
CHARLES N. QUIGLEY, CENTER FOR CIVIC EDUCATION
Mr. PORTER. Charles N. Quigley, executive director, representing the Center for Civic Education. Mr. Quigley.
Mr. QUIGLEY. Mr. Chairman, I appreciate the opportunity to testify here today on behalf of two programs in civil education supported by the U.S. Department of Education. These are a domestic program entitled, ''We the People,'' ''Citizen and the Constitution,'' and the ''Civitas,'' an international civic education program for former Soviet Bloc and Yugoslav nations conducted with the support of the USIA.
I've submitted written testimony. I'd like to highlight a few of the achievements of the program and say something about how they are complementary and interrelated.
The We the People domestic program is implemented throughout the United States with a volunteer network of about 500 coordinators at State and district level. In the international program, 15 States and the District of Columbia are now—the leadership is linked with eight former Soviet Bloc and Yugoslav nations in an exchange. For example, leaders in Alaska, the District of Columbia, Massachusetts, and New York are linked with their counterparts in Russia. Leaders in Arizona, California, and Nevada are linked with Bosnia and Herzegovina, Croatia, and Macedonia. Leaders in Indiana and Illinois are linked with Latvia and Lithuania.
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As a result of these exchanges, programs developed for students in the United States are being picked up and used successfully with students in former Soviet Bloc and Yugoslav nations. For example, this text is used throughout the United States with millions of students at the secondary level in the domestic program. This is a Russian edition of this text, which was just printed by the Russian Teachers' Union. Fifty thousand copies are now being used with secondary students throughout Russia. This text is used in the United States as a basis of the National Academic Competition at the secondary school level. An exchange delegation from Hungary observed the program in Florida and have gone back and duplicated it in Hungary. There is now a nationwide academic competition based on this model Hungary. Last year, it was hosted by the President and Hungarian Parliament. The academic competition this May is expected to be even larger than the one last year.
The Center's new program at the middle school level, which involves students in grassroots politics in identifying public policy programs at the local level, action plans, participating in local community government, is now being used with the support of the National Conference of State Legislatures in 47 States in the United States.
This is a Czechs version being used in a pilot program in the Czechs Republic, a Slovak version being used in the Slovak Republic, a Croatian version being used in Croatia. There are also versions in Lithuanian and Latvian.
But perhaps the program we're most proud of is this version, which happens to be a Bosnian version, that is being used throughout the Federation of Bosnia and Herzegovina. There are now 1,500 teachers using this program in Bosnia, in the Federation. By the end of this year, we anticipate there will be 50,000 students will have taken part in the program, which has been going for two years.
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Last year, an historic event took place in Sarajevo in May in which classes from throughout the Federation came and participated in their first ever academic competition on democracy. We're pleased, and somewhat astounded, to be able to report that the Ministry in the Republic of Srpska has approved a program. It's being used now in the Republic of Srpska, and they intend to bring Serb students to the second competition in Sarajevo this May. That will be truly an historic event with students—Croat, Muslim, and Serbs all competing on fundamental principles of democracy.
The success of these programs has led our Russian colleagues and the Hungarians and Bosnians, and so forth, to suggest we hold an international competition on democracy, which we would love to do. We'll have to figure out some way to do that.
This program is a two-way street. We give and we get. These are lessons developed by teachers in Russia, Hungary, Poland, and the other nations I mentioned, which portray their experience in attempting to make the transition from totalitarian and authoritarian systems to constitutional democracies. These are now being distributed to 3,000 teachers in the United States to be used on a field test basis, and they have the potential to use them with as many as 200,000 students, American students, this spring semester to help American students understand what it's like to live in an authoritarian and totalitarian system, and perhaps develop a greater appreciation for their heritage.
Mr. Chairman, I'm pleased that the administration has requested a modest increase in the domestic program to enable us to expand Project Citizen at the middle school level. They've also requested continued funding of $5 million for the international program. Half of that goes for civics; half for economic education. The program has been so successful, the USIA has asked us to involve more States and more former Soviet Bloc countries in the program. So we're requesting a modest increase of $500,000 for each, civics and economics, a total of a million dollars, to help us implement the program in such countries as Ukraine, Georgia, Biolarus, and of course Albania, to help them overcome the devastating effects of the recent war with the United States. I couldn't resist the joke—excuse me.
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I'm grateful for the opportunity to testify before you.
Mr. PORTER. Mr. Quigley, I think you're doing great things, and you deserve our support and we're going to do the best we can to help you. That is exciting because that really makes a difference, and particularly when you're going people to people.
I was just in Cyprus trying to help them develop intercommunal projects that allow people who are on the side of the line that has divided their country for 24 years to have human contact with one another, just as a beginning——
Mr. QUIGLEY. Yes.
Mr. PORTER [continuing]. And if you can reach out to other people across the world the way you are doing in bringing the lessons of democracy and respect for each human being to them, I think that's absolutely wonderful.
Mr. QUIGLEY. Thank you very much. I appreciate your support in the past very much for the program.
Mr. PORTER. Thank you for testifying.
Mr. QUIGLEY. Incidentally, the Bosnian Minister of Education will be here in a few weeks, and I hope that you'll have an opportunity to meet him.
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Mr. PORTER. All right. I look forward to it.
[The prepared statement of Charles N. Quigley follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
STANLEY O. IKENBERRY, AMERICAN COUNCIL ON EDUCATION
Mr. PORTER. Stanley O. Ikenberry, president, American Council on Education, testifying in behalf of the Council. Stan, it's wonderful to see you.
Mr. IKENBERRY. Thank you, Mr. Chairman.
Mr. PORTER. Former president of the University of Illinois, one of our premiere and large public universities in our country, and we are old friends. So, Stan, why don't you proceed in any way you like.
Mr. IKENBERRY. Well, thank you, Mr. Chairman. It's a real pleasure to be back here and, very frankly, a privilege. As I think you and I discussed at the close of the last session, the leadership that you and members of this committee have given to higher education funding, both for students, to open access, and to biomedical research has just been absolutely crucial, and it's widely recognized, certainly within the academic community, and I'm sure beyond that. If I do nothing else today, I want to thank you and members of the committee for the high priority that you've accorded higher education funding, and particularly student aid funding and biomedical research funding. It's open access; it's provided opportunity; it's provided choices and options to students that otherwise would not have been there, and overall, it's helped raise the quality of the academic enterprise and higher education in this country.
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It's sometimes said that American higher education is the best in the world. Whatever our status may be, we need to get even better, if one thinks about the changes that are taking place in our society and the implications not just for individuals, but for the quality of life in our society and the economy. I thank you for the priority and the leadership that you've given this issue.
I know that time is limited, so let me just comment quickly on the linkages between access to higher education controlling college costs and the importance of the Pell Grant and other Federal student aid programs. Family circumstance, family wealth, continues to be a very significant factor in terms of defining whether an individual in this country will or will not have access to college. For those students in the highest income levels, the highest family income levels, for example, they are more than 50 percent more likely, half again as likely to go on to college in contrast to the students at the lowest income level.
Last year, you made huge strides by increasing the minimum Pell Grant—or the maximum Pell Grant award by $300 to a $3,000 maximum. In addition, the innovative tax program that provides incentives and opportunities for middle-income families I think will have a tremendous impact. We still have a tremendous way to go. If one were to restore the Pell Grant maximum award to 1978 levels in terms of purchasing power, it would require about a 35 percent increase or more than $1,000 increase. In our wildest dreams, we're not likely to do that this year, maybe this year or next year, but we need to continue to press to make progress on that front to close the gap.
The point, I think, it too often missed of the linkage, however, between strong student aid programs and the ability to control college costs. The campus student financial aid budget has been the most significant cost-increase driver on many college campuses, particularly private and independent institutions that need to provide access to students from middle-and low-income families.
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Those tuition increases now have been headed down--the rate of increase has been declining for the last three or four years. Last year it was the lowest in 25 years. The National Commission on College Costs, just this past week, issued its report. I think that will be the No. 1 agenda on most college campuses across this country. Every president in the country shares this concern. But, I think, while we pursue that agenda at the campus level, it's important to note that a strong Federal student aid program, particularly a strong Pell Grant program, is very important to containing college costs.
One word also on the importance of campus-based programs: It's on the campus that student aid packages are actually put together, and it's a struggle for institutions, for students, and for families. The key is flexibility, but the Perkins needs-based campus student aid loan program is a terrific example of one program that's very important to campuses to be able to put together that tailormade package for individual students, as is, for example, the SEOG program and other campus-based programs. I simply wanted to stress the importance that we attach to that flexibility.
One final point: Mr. Chairman, you have received a great deal of testimony this morning, inspiring testimony, on the importance of biomedical research investment, and you, yourself, have demonstrated a tremendous interest in that area.
I wanted to return to an issue that's a bit of concern to you and to all of us, and that is the indirect cost recovery rate. I was pleased to read an article in The Chronicle for Higher Education and Beta on the top 100 research universities and the history of indirect cost rates from 1991 to 1997. The fact is that we've made some very significant progress on that front. A clear majority of these 100 institutions, 56 of the 100 institutions, had either reduced the indirect cost recovery rate or it had remained flat. The range of rates between the highest and the lowest had narrowed very significantly, and in the top 15 campuses with the highest indirect cost recovery rates, 14 out of the 15 had declined over that period. I think we are making some significant progress on this issue as a result of improved accounting programs, stronger Federal oversight, and a higher priority on the agenda of college presidents themselves. I believe this will provide us a good foundation for the kinds of strengthening that you and others want to bring about in the biomedical research programs.
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We know the budget pressures you face, and again, are grateful for the priority that you assign these issues because a strong Pell Grant program and other Federal student aid programs really is crucial not just to our campuses, but, more importantly, to students and families and the future of the country.
Again, I thank you, Mr. Chairman, for the ability to come before you again.
Mr. PORTER. Thank you, Dr. Ikenberry. Stan, I have to say that we'll do our very best. I think you probably heard my two sermonettes earlier today about budget. Those are very important points.
Mr. IKENBERRY. We understand that completely.
Mr. PORTER. I know you know them. So we appreciate very much your coming to testify.
Mr. IKENBERRY. Any way we could work with you to help you, we want to do that. Thank you.
Mr. PORTER. Thank you.
[The prepared statement of Stanley Ikenberry follows:]
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[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
ANN L. JENICH, NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS
Mr. PORTER. Ann Jenich, ANAD, director of special projects and State of Illinois Board member, testifying in behalf of the National Association of Anorexia Nervosa and Associated Disorders. Ms. Jenich? Did I pronounce your name right?
Ms. JENICH. You're the first person to pronounce my name right in about five years.
[Laughter.]
My name is Ann Jenich. I'm director of legislative affairs for the National Association of Anorexia Nervosa and Associated Disorders. Our acronym is ANAD. On behalf of ANAD, I'm deeply grateful to Congressman Porter and the members of the subcommittee for this opportunity to appear and give testimony on behalf of the estimated 8 million women and men in this country who are suffering from often life-threatening eating disorders.
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I also want to take this time to personally thank Congresswoman Lowey for her efforts on behalf of eating disorders by securing $1 million for the implementation of an eating disorders education and information hotline. It's an important first step. Educating people to the dangers and to the widespread nature of this illness is important, but education alone is not enough.
Founded in 1976, ANAD is our Nation's oldest nonprofit organization dedicated to alleviating the problems of eating disorders. ANAD early detection, education, and prevention programs provide models for low-cost outreach services that benefit hundreds of thousands of people over the past 20 years.
As a woman who has survived an eating disorder, it is also my privilege to speak out forcefully today about the dangers eating disorders pose to the physical and mental well-being of an epidemic number of America's youth, and in knowing this, on the importance of expanding programs, services, and research, particularly applied research, aimed at preventing another generation of youth from developing eating disorders.
The issue—and I'm sure you all know this—of eating disorders cuts to the very heart of the collective power, self-esteem, and life success of a generation of young people. This is a major public health problem, one that seriously impairs and often endangers the lives of a vast majority of people who develop these disorders.
Eating disorders as a phenomenon are culturally-embedded in the experience of American young adulthood, and while these problems are especially acute for our Nation's girls, we know they are shared with a growing number of boys. What is the matter? Why do so many young women reject their bodies? Why is it that for 80 percent of American young women being female means feeling too fat? And I know I just spent a weekend at the University of Illinois working with the Panhellenic Institute, and I will tell you everybody had a story to tell.
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What are the consequences to our Nation's children of adopting such deeply-distorted body images? We also know that people's body images are shaped at very young ages, and teachers are telling us, our organization, that girls as young as 5 and 6 are overly concerned with their weight.
The National Institute of Mental Health reports that 1 out of 10 people with anorexia nervosa will die. A staggering 1 in 4 college-age girls will struggle with some form of an eating disorder. It is logical to assume that a potential consequence of the negative relationship many of America's children develop with their bodies is in part associated with the dramatic rise in eating disorders. In fact, Dr. Harold Goldstein, Director of the National Institute of Mental Health, reports that the incidence of anorexia and bulemia has doubled over the last decade. We are also seeing in our organization second-generation children from mothers who have anorexia or bulemia appearing over our hotline.
Eating disorder specialists, educators, and researchers are corroborating those findings. We are also listening to teachers during the conferences and the workshops that we host—the same thing.
Given the epidemic of disordered thinking, graphically illustrated in these statistics, and the undenial influence of the media on the developing self-concepts of America's children, it is no wonder that there is a cultural mindset in place by the time they reach adolescence that places millions of our children at risk.
Death and disability rates from eating disorders are among the highest of all mental illnesses. Yet, both in number of victims and cost of treatment, eating disorders are major illnesses in our country which do not now, and have not ever, received adequate understanding or support.
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For example, allocations to combat alcohol, drugs, or schizophrenia and effective disorders are each funded at exponentially higher rates than the amounts given to eating disorders. Yet, for illnesses like eating disorders, there is also inadequate information available to the general public about these disorders, and we are grateful again, as I said, for the hotline.
Our organization just completed a landmark survey of 50 States and we conducted a survey to assess the types of eating disorders, programs, and services available to American citizens. Preliminary survey results reveal a widespread deficit in educational information available to all Americans. In fact, at the grade school level, there was very little available information to teachers about just the basic etiology of eating disorders, let alone prevention. Given the pervasive nature of these disorders, in our minds that's shocking.
Knowing this, coupled with the fact that there's an only estimated 50 percent cure rate for those suffering from chronic eating disorders, we believe there is a dire need for Federal funds sufficient to establish a national comprehensive prevention program to protect our citizens from these illnesses.
While evidence of the need for primary educational programs is indisputable, it is not enough. It is critical, if we hope to reduce the prevalence of these illnesses, to also provide long-term opportunities for our children and youth to examine and challenge the attitudes and behaviors that lead to eating disorders.
Programs and prevention must go beyond addressing problematic and symptomatic behavior to teaching resistance to cultural values and attitudes that diminish a young person's self-esteem. To be truly effective, prevention programs should focus on teaching children the skills necessary to cope with the emotional complexities of life in a positive, life-affirming way. We believe this can be most effectively achieved through school-based programs and support groups.
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I want to make a personal comment here. There's very little emphasis on this at the research level and very little being done out there, but at the University of Arizona there has been a study that is just completed, and the results are very, very positive. It was a longitudinal study. It was a school-based study, and we need to do more studies and fund more studies of that nature.
For this reason, we urge Congress to allocate $10 million for use in developing comprehensive education and prevention of eating disorders through early detection and educational wellness programs for all of America's school-age children. As a recognized leader in this field, we believe our organization could provide a model for this service.
We also believe, and we know, that eating disorders are multi-causal. For this reason, we ask Congress to increase current funding for the research necessary to further investigate the causes of these disorders, and not just funding for drug studies. This funding is essential if we are to develop truly inoculative prevention programs.
We ask Members of Congress to do all that they can today to enact legislation assuring that the problems and issues of people suffering from eating disorders are adequately addressed, so that we can look forward in the future to eradicating these deadly illnesses that so adversely impact our youth in this country.
Thank you.
Mr. PORTER. Ms. Jenich, we thank you for coming to testify. The association is in Highland Park, Illinois, in the heart of my district. Are you a constituent?
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Ms. JENICH. I am.
Mr. PORTER. Well, we're delighted that you could come.
Ms. JENICH. But I am a Packer fan, I want to tell you.
Mr. PORTER. A Packer fan?
Ms. JENICH. Absolutely.
Mr. PORTER. Well, the Bears don't leave you much choice these days, though.
Ms. JENICH. It's been a long winter.
Mr. PORTER. I would say so.
I'm dismayed at the degree to which you say we are falling short in this area. Congressman Lowey has been a very strong advocate, as you mentioned in your testimony. I have great concern about these diseases, and we simply are going to have to do better.
Ms. JENICH. Okay. I'd also like to say one more thing. We are meeting this week with the legislative assistants for the women who are on the caucus, the Congressional Caucus, and one of the things we are asking the caucus to do is to initiate a letter to President Clinton asking him to develop a task force to take a look at the issue of eating disorders in this country, and also the bigger issue of body image distortion that many women seem to suffer from.
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Mr. PORTER. Thank you so much for coming to testify.
[The prepared statement of Ann Jenich follows:]
"The Official Committee record contains additional material here."
WITNESSES
RONALD KRAMIS, FIBROMYALGIA NETWORK
Mr. PORTER. Ronald Kramis, Ph.D. neurophysiologist, testifying in behalf of the Fibromyalgia Network.
Mr. KRAMIS. Yes.
Mr. PORTER. Dr. Kramis.
Mr. KRAMIS. Thank you, Mr. Chairman. In light of your sermonette, I would like to emphasize that your capability to direct the attention of NIH to the subject of my presentation is extremely important. There's a huge fund of information in the basic neurosciences that is yet not being applied to fibromyalgia. It's important that the attention of NIH, as well as some funding, be directed toward this disease.
Fibromyalgia is a persistently painful disease which costs this Nation $20 billion in health care and socioeconomic costs. I want to talk to you particularly about the unremitting life of pain that is associated with fibromyalgia. This is a pain which destroys careers and disrupts. This is a pain for which there is no truly effective treatment. This pain is endured day after day, year after year, by over 5 million Americans. Right now, because of progress in the basic neurosciences and the clinical neurosciences, you and NIH have a tremendous opportunity to help these 5 million Americans. You can do so by focusing attention on this disease, both the attention of NIH and the attention of the scientific community.
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The pain of fibromyalgia is a deep and sometimes agonizing muscular-skeletal pain that is perceived to occur throughout the body. Just as with many other chronically-painful conditions, such as severe low back pain, fibromyalgia pain occurs in the absence of any apparent injury or disease in the tissues that are felt to be painful. This often raises questions of credibility for individuals suffering from fibromyalgia and for the disease itself, particularly within the health care insurance industry.
Let me assure you as a neuroscientist who has been studying the biological mechanisms of pain for many years, even severe and persistent pain can occur without pathology being present in the tissues which are felt to be painful. Many of the biological mechanisms by which this can occur are already understood, some of them even at the molecular level. It's a tragedy for individuals who suffer the unremitting symptoms of fibromyalgia and other chronically-painful conditions that so few clinicians, scientists, and health care administrators understand the biological mechanisms of pathological pain.
I'd like to encourage you, now or at some other time, to try a little experiment which will help you understand how easily muscular-skeletal pain can occur in the absence of tissue damage. Just reach across your chest with your thumbs and all four fingers and squeeze the large muscle that runs from the back of your neck to your shoulder. A firm squeeze but one that is certainly not tissue-damaging will become uncomfortable. If you squeeze a bit harder, then hold that squeeze for a minute or two, or even a bit longer, if you can, you will have some understanding of the pain that fibromyalgic patients go through day after day, year after year.
Two neurologically important substances, both known to be involved in the generation of persistent pain, have recently been shown to be present in pathologically high concentrations in the central nervous system of individuals with fibromyalgia. This indicates that fibromyalgia is probably a central nervous system disorder rather than a muscular-skeletal disorder, as originally thought.
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In spite of these recent discoveries, there remains no effective treatment for fibromyalgia. Even narcotic analgesics do not provide effective remedies for fibromyalgia pain.
Fibromyalgia interferes with all aspects of a person's life. There are many symptoms associated with the disease other than pain itself. Even the normal activities of everyday life exacerbate the pain of fibromyalgia and produce abnormally intense fatigue.
Fibromyalgia is severely disabling. Twenty-six percent of patients recently surveyed were receiving disability payments. Fibromyalgia frequently evolves from a prior, more restricted, more localized painful condition. In two recent studies, 25 to 50 percent of patients with chronic, localized, low back pain eventually develop the total body pain of fibromyalgia.
Fibromyalgia occurs eight to ten times more frequently in women than in men, and is to some extent familiar. This suggests a gender-link genetic component to disease.
Now despite the $20 billion socioeconomic and health care burden of fibromyalgia, funding for fibromyalgia research is practically unavailable. On behalf of the 5 million American men and women who endure fibromyalgia and on behalf of Fibromyalgia Network, the largest self-help organization, I urge this committee, through NIH, to focus the attention of the scientific community on the fibromyalgia syndrome. As the result of recent discoveries in the neurosciences, this is the right time to fund fibromyalgia research.
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Thank you very much.
Mr. PORTER. Dr. Kramis, thank you very much for your testimony.
If I understood you correctly, this disease—-has anybody looked into the mental aspects of the disease, or is it clear it's physiological.
Mr. KRAMIS. There right now is a considerable discussion within the scientific and clinical community concerning this. In any chronically-painful condition you are going to develop some psychologically-associated conditions, but it's very clear that there are physiological mechanisms here which are known from the basic sciences to be related to persistent pain that are occurring in these individuals, and there is, I think, a really unfortunate tendency right now because the medical community does not have good means to treat this disease and does not understand. To say the easy answer—it's a mental problem; we can't treat it as a physiological problem; let's do a cost-containment study; let's get rid of these people, not treatment them—these people have a real disease; it's not going to go away. We are going to continue impacting the socioeconomic system, and cost containment alone is not the answer. We've got to find the cause.
Mr. PORTER. The reason, I asked is we had testimony—we had a special hearing on the role of the mind in health and healing, and there was testimony that a great deal—and you mentioned back pain, related back pain, in respect that a great deal of the back pain, which is a huge economic burden in our society—practically 80 percent of the American people experience it sometime, severe back pain—that that may be related to stress.
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That's the reason I asked whether this pain might also be related to stress, but you're saying that there's obviously clear physiological causes for it?
Mr. KRAMIS. There are clear physiological causes, and with low back pain, 95 percent of the cost you're talking about occurs as the result of 5 percent of the individuals with back pain, and those are individuals with what's called idiopathic low back pain for which there is not an obvious physical cause. But if you look at the neurosciences, basic information in the neurosciences, there are mechanisms that just are not getting through to the clinical community, that can, in fact, give good reason why pain can occur in the absence of obvious physical pathology. It's a neurological mechanism. You don't generate pain in the tissues that feel painful; you generate pain in the central nervous system. And if there is disorder in the central nervous system—and, in fact, a common process called central sensitization—you will get abnormal levels of pain, and it doesn't require that you have a severe physical, pathological condition in the peripheral tissue in order that you feel extreme pain, as if it were occurring in those tissues.
Mr. PORTER. Dr. Kramis, thank you very much for your testimony.
[The prepared statement of Ronald C. Kramis follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
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HEATHER FRASER, CYSTIC FIBROSIS FOUNDATION
Mr. PORTER. Heather Fraser, consumer and legislative affairs coordinator for the Cystic Fibrosis Foundation. Ms. Fraser.
Ms. FRASER. On behalf of the 30,000 children and young adults with cystic fibrosis in this country, the Cystic Fibrosis Foundation is pleased to submit public witness testimony to support Fiscal Year 1999 appropriations for the National Institutes of Health. The Foundation applauds the subcommittee for the CF-specific language included in the appropriations bill last year. This vote of confidence in the NIH served to make the future for me and many others with CF much brighter.
This year you have been hearing testimony punctuating the need for increased Federal funding for many entities, including medical research. It's my hope, however, that one day there's not going to be a need for extensive deliberation—not because an infinite pool of resources has suddenly become available, but because a portion of that need has been eliminated.
The Cystic Fibrosis Foundation urges the House of Representatives to concur with the President's recommendation to double the funding for the NIH over the next five years, and as a downpayment on this commitment, provide an increase of at least 15 percent in 1999. We request your continued support of the full spectrum of research—basic, clinical, and translational—sponsored by the NIDDK and the NHLBI.
The resource capacity of these two institutes is of paramount importance to propel the frontiers of CF research into the millennium. We believe this funding level is justifiable and appropriate allocation, given the clear and pressing research opportunities that exist.
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Current biomedical research policy only enables funding of two out of every ten approved research grants. This is unconscionable, and one cannot help but wonder what progress could emerge and how many lives could be saved if all of these meritorious grants were funded.
Support to general clinical research centers must also be increased. These 74 NIH centers are specifically equipped to provide support to clinically-trained investigators to examine disease conditions and to access new therapies. With the advent of managed care and the increasing constraints that academic medical centers are placed under, more and more ancillary costs for clinical trials are being placed on the shoulders of the GCRCs. These centers are pivotal to the identification of new therapies to treat and eventually cure cystic fibrosis and other life-threatening illnesses.
Further, the CF Foundation asks this subcommittee to direct the NIDDK, NHLBI, and the National Center for Research Resources to develop key mechanisms to ensure rapid translation—and I emphasize ''rapid''—of basic research into new therapeutic interventions. Creative development of an institutional infrastructure similar to that already in existence to support basic research in teaching institutions should be created to support and monitor ongoing clinical trial investigations.
The NIH has an incredible track record in developing basic research and understanding cellular processes. However, it is unbelievably naive to think the pharmaceutical and biotech industries are prepared or in a position to lead the effort to take this knowledge and follow the clinical evaluation. Unless there is a permanent mechanism in place, drug development opportunities, along with many, many lives, are going to be lost unnecessarily.
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Clinical research training opportunities must also be expanded. Well-trained clinical investigators are vital to further progress made in the research lab and to translate that progress to patients. Never before has the need been more urgent and the number of candidates so small. Additional initiatives in post-doctoral training, support for new and young investigators, and programs to facilitate the mentoring of these individuals are pressing priorities.
In closing, the National Institutes of Health and the Cystic Fibrosis Foundation continue to work together to provide for leadership in this country that is unparalleled. As a foundation, we understand current funding constraints and that Federal programs, regardless of their merit, have been placed in competitive positions. However, I can tell you as a patient at the end of the day when I return home exhausted, in part due to work, but more worn out as a result of dealing with the daily rigors that are the unwelcome hallmark of this illness, that cavalier acceptance is just not justified.
Sadly, there will be casualties at the close of this debate. Nevertheless, we must work together and ensure that the human cost is kept to a minimum. On behalf of the CF Foundation, I again urge this Congress, in particular, this committee, to seriously consider the President's recommendation to double the NIH appropriations over the next five years, and in particular, provide a 15 percent increase in funding for 1999.
Thank you for allowing me to testify today.
Mr. PORTER. I'm inclined to say, tell us how you really feel, Ms. Fraser—[laughter]—but, no, I think your testimony was very strong. The President, unfortunately, has proposed to double the funding over the next ten years, not the next five years. His rate of increase is good. I'm encouraged by it, but it is not what we have suggested. It has raised his level of commitment dramatically to—I think the increase for this year would be about .2 percent for science research, but we think that 15 percent is a much nicer figure. But it is encouraging.
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I have to say that the funding of meritorious grants is low. The reason it's low, though, isn't that we aren't putting more resources into research. It's that there is so much more meritorious science out there to fund, and what we need to do is to ramp-up our funding to capture more of that earlier, and help in diseases like cystic fibrosis, where the chances for breakthroughs are good. What it tells us is that the historical level of about 3 percent in real terms per year that NIH has experienced over its whole 50-year lifetime is really not enough, considering how fast science has advanced in recent years, and we need to increase that real rate of increase much faster. So that's why we're all raising our sights, and in that process the President is raising his sights, too, and I think that's very positive, to try to move him along even a little more.
Thank you for your good testimony.
[The prepared statement of Heather Fraser follows:]
Offset folios 1162 to 1166 insert here.
Thursday, January 29, 1998.
WITNESS
PETER REUTER, PH.D., COLLEGE ON PROBLEMS OF DRUG DEPENDENCE
Mr. PORTER. Dr. Peter Reuter, Chair, Public Policy Committee, representing the College on Problems in Drug Dependence. Dr. Reuter—I've got to put my glasses on here. Dr. Reuter.
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Mr. REUTER. It rarely is pronounced correctly, even by reporters.
Mr. PORTER. Is it——
Mr. REUTER. It is Reuter. Thank you.
Mr. PORTER. I read the ''e'' as an ''s,'' I'm sorry.
Mr. REUTER. I'm pleased to appear before you today on behalf of the College on Drug Dependence, the oldest society for research on drug dependence and drug abuse, to urge your continued support from the National Institute on Drug Abuse and the Substance Abuse and Mental Health Administration. This committee has provided great backing in recent years for the NIDA budget. An almost unparalleled 7.6 percent increase—we pay attention to the decimal points quite closely—given in Fiscal Year 1998 is enormously appreciated by the college, and we urge that you provide a substantial increase in the funding base this year.
As both the President and Senator Lott stressed in their speeches on Tuesday night, the continued high levels of adolescent drug use and smoking represent major public health problems for the Nation. The administration has drafted a plan for reducing drug use by 50 percent in the next ten years. Some of your colleagues believe that this is insufficiently ambitious and propose that the same goals should be achieved in five years. In either case, success is critical dependent on the continued flow of research breakthroughs that can only be secured by NIDA-based new technologies in SAMHSA from the training and implementation programs.
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Let me illustrate the problem presented even by the administration's more modest goals for adolescent drug use. In 1996, according to the Monitoring the Future Survey, 24.6 percent of high school seniors reportedly used an illicit drug in the prior 30 days. In the 23 years of monitoring the future, that rate has never been lower than 14.4 percent, which was in 1992, and that level was sustained precisely for one year and rose to over 18 percent the following year. Yet, the administration's target is to reach and sustain a level of 12.3 percent ten years from now, an historically unprecedented low rate.
The challenge here is simply in relative ignorance about what determines drug use amongst adolescents. The dramatic cycle in adolescent drug use over the past 20 years, the sharp increase in the late 1970s followed by a very prolonged and substantial decline throughout the 1980s, and then a sudden rebound in 1992, are known to be related to adolescent attitudes toward risk of drug-taking. What we don't know is what led to the changes in attitude that have driven the increases in drug uses recently. The most profound theory accounting for the upturn after 1992 is the two-word phrase: generational forgetting, which is hardly the basis for serious research or policy.
Thus, we do not know how to reliably affect attitudes through prevention activities. That requires, first, careful development of model prevention programs based on the strong theoretical understanding of what drives adolescent behavior, and then these programs must be tested on a large scale to ascertain how they can effectively be implemented across the many school districts and local family service agencies in the country. So many model programs fail in the implementation, which needs to be studied itself.
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Absent substantial improvements in our knowledge base, the Nation's ability to achieve historically low adolescent drug use is very questionable. The same is true for smoking initiation rates. Your support for NIDA is vital since current prevention and treatment programs are simply not powerful enough to assure that, even with adequate funding of those programs, they can achieve the goals of reducing adolescent smoking rates by 60 percent in ten years, which is the goal that most Members of Congress and advocates have accepted or induce most current smokers to quit.
The combination of large-scale epidemiological studies in laboratories on the addictiveness of nicotine have been critical in creating a public awareness of the dangers of smoking, particularly of initiation, and having to force the tobacco companies to accept the responsibility for public health disaster of the first order.
NIDA funding provided the initial research leading to the development of nicotine patches, and NIDA and other NIH institutes have improved the efficacy of gums and patches as replacement therapies. These advances have enabled large numbers to give up tobacco smoke, smoking.
But given the time it takes to test and implement new programs, the 10-year goals require substantial immediate investments in research. Thank you for providing this opportunity to testify.
Mr. PORTER. Dr. Reuter, I suggest—and this is not scientifically verifiable, either—that perhaps the reason for the rise in the use of drugs and tobacco relates to what our young people see on television, what our celebrities, sports figures, and public figures stand for in their minds, and role models that are positive and lead to positive behavior I think are terribly important for young people. Often we see only bad evidence of bad character, and maybe that is what is affecting these kinds of behaviors.
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Mr. REUTER. I'm sure you're right——
Mr. PORTER. And I'm not referring to anything current; I'm simply saying this is often what we see, and I think it sends all the wrong signals. It's the nature of our media. You never see the good things; you only see the bad.
Mr. REUTER. Bad news is much more interesting——
Mr. PORTER. Yes.
Mr. REUTER [continuing]. As the last week has suggested.
Mr. PORTER. I'm afraid so. Thank you for your testimony.
[The prepared statement of Peter Reuter follows:]
Offset folios 1173 to 1180 insert here.
Thursday, January 29, 1998.
WITNESS
PHYLLIS GREENBERGER, SOCIETY FOR THE ADVANCEMENT OF WOMEN'S HEALTH RESEARCH
Mr. PORTER. Phyllis Greenberger, executive director of the Society for the Advancement of Women's Health Research, testifying in behalf of the Society. It's nice to see you.
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Ms. GREENBERGER. Well, I was going to say ''good morning,'' but it's afternoon.
Mr. PORTER. Yes, I'm sorry, we are really running so late here.
Ms. GREENBERGER. Good afternoon to you, Mr. Chairman. I thank you very much for the opportunity to testify.
As noted, I'm the executive director of the Society for the Advancement of Women's Health Research, and we're the only national organization committed to improving women's health through research, and I'm here today to voice our support for increased funding for a variety of women's health research programs.
I'd like to begin by saying that we support, needless to say, many of the previous statements regarding the increases in the funding for the National Institutes of Health. I'm sure it hasn't gone unnoticed that many of the conditions that were mentioned to you this morning—from Interstitial Cystitis, fibromyalgia—disproportionately affect women, and so, obviously, this is an area that we're most concerned about and request your support.
And what we support, obviously, are these increases across the Institute for these conditions. You will, obviously, be hearing from many more of these in the next few days, and we want to talk about another area that we feel that really includes all of them, and so that we are not separating out women's diseases from men's diseases or one institute from another.
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You may be aware that women's health research is moving into a new era, and that is, it's branching out to look at gender-based differences at the cellular and the molecular level. Researchers are discovering the roles hormones play in the development of various organs and the etiology of diseases, and understanding these gender differences and their implications for clinical care will likely find results beneficial to both genders.
There have been several recent examples of gender differences. I'm sure your aware of the differences in cardiology. We all recognize differences in neurology and immunology, and we are just realizing that these differences exist. As I know you know, for many years we weren't looking at these differences between genders, and we weren't including women in clinical trials systematically, and so these differences went unnoted. But now that we know that they do exist, we need to encourage research in these areas and understand the implications.
The Office of Research on Women's Health provides a unique focus at NIH in accord with its mandate to, I quote, ''develop an integrated strategy for increased research into diseases, disorders, and conditions that are unique to, more prevalent among, or more serious in women, and for which there are different risk factors of interventions for women than for men.''
The office also provides a pivotal point for communications among the institutes and centers for proactively developing multiple disciplinary research opportunities for women's health research, as well as ensuring the inclusion of women and minorities in clinical trials across the institutes, and we commend the NIH on its extraordinary recent discoveries in genetics and cancers predominantly affecting women. While there are numerous conditions that need attention—and, as I said, will be addressed before this committee—I would like to just emphasize one which actually was mentioned by Judy DeSarno earlier, but I'd be remiss if I didn't.
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As a member of the Presidential Advisory Committee on HIV/AIDS, we urge the NIH to expand its research portfolio in the area of microbicides to help prevent the spread of HIV infection and other sexually-transmitted diseases. There is a great need to develop contraceptives and microbicides that are unnoticeable, fast-acting, inexpensive, safe, and effective.
To accommodate the health needs of the population for 1999, we recommend overall increases of 15 percent for the women's health budget and the NIH as a whole, tying the Office of Research, Women's Health, to the overall NIH addition in funding.
In addition to the NIH, AHCPR actually has been mentioned, but we'd like to mention that for a moment again, but also a couple of other agencies that have not been mentioned. I'm sure you know that in the Office of Women's Health, recently, the last two years, there has been funding for centers of excellence within the Public Health Service, and the Society would like to recommend doubling the funding for that.
There is a great need to leverage resources within academic health and medical institutions, and this program provides the development of a multidisciplinary research agenda on women's health issues and comprehensive and integrated health care services for the special needs of women. It also provides public and health professional education and training.
The Agency for Health Care Policy and Research, as I stated, has been mentioned previously by Dr. Lurie and Dr. Hobbs, but we would like to emphasize that as well. Despite improvements, women still lag behind men in quality of care and access to health services. For them, in particular, the work of AHCPR is vital.
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For example, the agency is supporting the study that looks at the widely-reported differences in medical treatments—specifically, cardiac procedures—for women and men, and patients of different races. To continue to implement this agenda, the Society would like to recommend a 20 percent increase in funding for AHCPR.
I'm going to quickly run through this. I'd like to mention an area that has only been mentioned briefly, and that is the Center for Disease Control and Prevention, Office of Women's Health. This agency ensures that women's health and prevention needs are addressed, and it's committed to projects that address gaps in CDC programs and differences among subpopulations of women.
Again, we recommend a 15 percent increase in CDC funding, and I don't have to tell you—and I have statistics here which you already know—an ounce of prevention is worth a $1,000 in cure. So we all know that we need prevention, and we need to strengthen the CDC, and particularly, obviously, as a women's health research organization, we are concerned about the implications for prevention in the area of women's health research.
I appreciate the opportunity to testify. Obviously, my complete remarks will be, hopefully, entered into the record.
Mr. PORTER. Yes, they will.
Ms. Greenberger, Ms. Lowey and Ms. Pelosi have been wonderful advocates for women's health research, and I know that when we go to mark up the bill, they will be right there along with others on the subcommittee, because this is a subject of great concern to us.
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Ms. GREENBERGER. We appreciate that, and we very well know Congresswomen Lowey's and Pelosi's and DeLauro's support as well as yours for these areas, and we very much appreciate it.
Mr. PORTER. Thank you very much for testifying.
Mrs. LOWEY. Mr. Chairman, just briefly——
Mr. PORTER. Ms. Lowey.
Mrs. LOWEY. I just want to take the opportunity, actually, to thank our chairman. The chairman has been probably the strongest advocate for funding for the National Institutes of Health, and obviously, as we are making these difficult choices, we should all continue to work as hard as we can to increase the investment in the National Institutes of Health, thereby allowing greater investment in so many of the areas where we care passionately about, and that you testified about.
I want to thank you and the Society for Women's Health for your strong advocacy, because you have been very vital in this effort, and in putting together a board of first-class scientists, you have been very helpful to us in helping us establish our priorities. So I want to thank you, Phyllis, and the Society for your leadership in this critical area.
I thank you, Mr. Chairman.
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Mr. PORTER. I did not mean to leave out Ms. DeLauro. We missed her for two years, and then she's definitely back.
Thank you so much.
Ms. GREENBERGER. Thank you very much.
[The prepared statement of Phyllis Greenberger follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
DAVID BECK, CHAIR, ASSOCIATION OF INDEPENDENT RESEARCH INSTITUTES
Mr. PORTER. Last, but certainly not least, Dr. David Beck, Chair, Government Relations Committee, and immediate past president, Association of Independent Research Institutes, and president of the Coriell Institute for Medical Research in Camden, New Jersey, testifying in behalf of the Association of Independent Research Institutes. Dr. Beck.
Mr. BECK. Thank you, Mr. Chairman. On behalf of the Association of Independent Research Institutes, abbreviated AIRI, I thank you for the opportunity to testify before you today and to help build the record that will enable you to carry yours and the committee's passion on health research to the full Congress.
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AIRI is an association of not-for-profit research institutes that conduct basic and clinical research in the biomedical and behavioral sciences. Our institutes receive about 10 percent of all of the NIH extramural funding, as well as extensive funding from other Federal and private agencies, foundations, and corporations. AIRI are distinct from other organizations involved in biomedical research in that our primary mission is research. I am here not only as a participant in the biomedical research enterprise, but also because I believe passionately the potential of the work that we are doing has to provide enormous benefits for the Nation's health and for its economy.
Mr. Chairman, over the past few years, you and your subcommittee have stood firm in your support of NIH and its mission, and your faith has been rewarded by the extraordinary progress in understanding the processes of life that you have heard about so many times before you today and at other times. We ask you to demonstrate your support once again for the work of NIH by providing a 15 percent increase in funding for the Fiscal Year 1999, as called for by the Ad Hoc Group for Medical Research Funding. We at AIRI support the Ad Hoc Group's position that sustained funding, sustained growth in funding, for the NIH is needed to capitalize on past scientific achievements, address present medical needs, and anticipate future health challenges. This sustained growth that we are seeking, beginning with a 15 percent increase and culminating with a doubling of the NIH budget, is needed not merely to accelerate the pace of research, but the fundamental way science is being done is being revolutionized. Science will require new investment in new technologies, new infrastructure, and personnel with new sets of skills. This investment is necessary to ensure that the research community can take full advantage of these new approaches to discovery.
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AIRI members know firsthand what has been accomplished with NIH research, and we know how much more can be done with additional NIH funding. I would like to cite for you just a few examples of successes achieved at AIRI institutions with NIH support over the last year.
At the Whitehead Institute in Cambridge, Massachusetts, Dr. Peter Kim produced the first picture of a protein that enables the AIDS virus to invade human cells, work that has immediate implications for new drug design.
At the Oklahoma Medical Research Foundation in Oklahoma City, researchers have been able to establish a powerful association between the Epstein-Barr virus and lupus, a serious autoimmune disorder.
At the Neuropsychiatric Institute in Fargo, North Dakota, researchers are evaluating the importance of taste preference in determining the vulnerability to substance abuse.
At the John B. Pierce Laboratory in New Haven, Connecticut, researchers are working to determine the means by which cells lining the blood vessels' walls communicate with each other to convey messages about blood flow, thus, acting to prevent blockages such as might lead to stroke.
And at the Coriell Institute for Medical Research and the Wisstar Institute in Philadelphia, Coriell cells, human cells which were developed by us jointly, were carried into space last week on the Space Shuttle Endeavor and are being grown as we speak on the Space Station MIR to study the effects of microgravity on human cell growth.
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Being thoroughly cognizant of your sermonette regarding the budget allocation process, I urge your support for the Ad Hoc Committee's budget proposal for NIH, and I thank you deeply for the opportunity to appear before you today.
Mr. PORTER. Dr. Beck, thank you so much. We're sorry that you had to wait so long and we got so far behind. I'll try to do better in the future, is all I can say, and obviously, we'll try to do our very best to meet the terms of your testimony in terms of funding for research.
Mr. BECK. It was a very valuable opportunity for me to be convinced that the basic research the AIRI Institutes do is even more valuable than we thought it was because it cuts across so many areas and so many of the stories, the powerful stories you heard today, are benefitted by the research that we do. A single research project can benefit many different diseases, and so basic research is truly the key, I believe.
Mr. PORTER. I will lobby you for another second. The American public needs to understand this. They need to know it specifically, and you need to get the message out. I need to get the message out—we all do—to them, as to why this is so important to their lives, to the lives of other people in the world, and to the country and its future.
Mr. BECK. I agree completely.
Mr. PORTER. Thank you very much.
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[The prepared statement of David Beck follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. The subcommittee will stand in recess until 2:15 p.m.
Afternoon Session
Mr. BONILLA [presiding]. The subcommittee will come to order.
Chairman Porter will be along shortly, as will several other members on either side of the Chair, and Ms. DeLauro has arrived, I notice.
Thursday, January 29, 1998.
WITNESS
LINDA CHAVEZ, CENTER FOR EQUAL OPPORTUNITY
Mr. BONILLA. We will now begin hearing from our witnesses. As we begin the hearing, I want to remind witnesses of two provisions of the rules of the House. In addition to the written statement, nongovernmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they or the entity they represent had received. If you have any questions concerning the applicability of this provision or question as to how to reply, please contact the subcommittee staff.
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In order to accommodate as many members of the public as possible, we have scheduled over 20 witnesses for each session and still are not able to hear from all who wanted to testify. Overall, we will hear from over 200 witnesses in this segment alone. As a result, we must enforce the rule limiting testimony to five minutes very strictly, just in consideration for all of those who are appearing before us. I'd like to ask that, as you testify, you keep this limitation in mind in consideration for the other witnesses that will follow you. This year, we have started using a timer, which you'll hear a little noise output here when your time expires.
At this time, I'd like to call Linda Chavez, president, Center for Equal Opportunity. Welcome, Ms. Chavez.
Ms. CHAVEZ. Thank you very much, Mr. Bonilla. On behalf of the Center for Equal Opportunity, I'm privileged to be here to testify this morning on an issue that I know concerns you and should concern all Members of the United States Congress, and, indeed, all United States taxpayers. It is an issue that affects 3 million limited-English-proficient children in the United States, and it has to do with the Office for Civil Rights' enforcement under the Lau decision of provisions for the teaching of limited-English-proficient children.
As you know, Mr. Bonilla, in 1974 the Supreme Court decided that it was not enough simply to provide school children in the United States equal textbooks, the same teachers, and put them in the same classroom; that if those students did not speak English as their first language, that they needed to have extra help in order for them to be able to take advantage of the opportunity.
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Since 1974, the Office for Civil Rights at the Department of Health and Human Services—and the Department of Education—has had a history of enforcing the Lau decision to require local school districts to provide not instruction in English, but rather instruction in the native language for hispanic children. I have submitted a written statement and included in that part of a chapter of a book I wrote on this subject, as well as two recent articles that I wrote for The Chicago Tribune.
OCR's approach to the problem of limited-English-proficient children has been to mandate native language instruction, and most recently, the Office for Civil Rights has threatened the Denver public school system with a potential cutoff of all Federal funds unless Denver ceases reforms in its program which would include the introduction of more English into the curriculum for limited-English-proficient hispanic children in that school system. Indeed, there are more than a million hispanic children in the United States who are in programs that emphasize not the learning of English, but rather teaching in the native language. We might ask whether or not there is sufficient evidence to show that native language instruction is better than teaching children in English, and in fact we know that studies that have been done that look at the validity of all of the research in this area, show that in fact native language instruction does not provide better education opportunity to limited-English-proficient children.
Christine Roselle and an associate of hers, Keith Baker, who was formally with the Department of Education, has in fact looked at a survey of 72 studies of the issue of limited-English-proficient children that meet the normal scientific validation requirement and found that 78 percent of those studies show that teaching children in their native language is not only better for them than doing nothing, but that it may in fact be worse. The National Academy of Science just a year or so ago also took a look at the issue of how we teach limited-English-proficient children and showed that there is simply no reason, looking at the literature, to assume that teaching children in their native language is in fact better for them.
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We also know from a tremendous amount of research that's going now on in the area of how human beings acquire language, the basic area of neurology, that the earlier that children are exposed to a second language, the greater the likelihood is that those children will, in fact, be able to fully incorporate the syntax, the vocabulary, the grammar of that second language. So there's simply no scientific basis for the Office for Civil Rights to be mandating the teaching of limited-English-proficient children in their native language.
Well, if there isn't research to show why this is being the best method, perhaps there are other agendas, and I would contend that there is, indeed, a political agenda here having nothing to do with the needs of limited-English-proficient children or with the research in this area. Norma Cantu, who is the Assistant Secretary for the Office for Civil Rights, for example, was a lead attorney with the Mexican-American Legal Defense and Education Fund. That has promoted the teaching of native language instruction, and in fact she was involved in a court suit that led to the Denver public school system adopting its native language program, and yet she is now the person who is in charge of determining whether or not changes in that program meet OCR's definition of a proper title VI enforcement.
Also, the placement of children in these programs I believe is based more on a political agenda that is aimed at maximizing the number of children who are eligible. The criteria that's used by the Department of Education, and encouraged around the country, the criteria which looks not at the child, the language that the child speaks, but rather the language that is spoken in the home. So, for example, since I grew up as a young child in New Mexico with a grandmother and grandfather who spoke mostly Spanish to each other, I would have been eligible for such a program, even though that was not my language.
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Moreover, standardized test scores are then applied, and as you know, a standardized test score is simply a way of determining the bell-shaped curve of distribution of the children taking the test, and the Office for Civil Rights determines that if you score below the 40th percentile, that you are automatically eligible. Forty percent of all children, even those who are monolingual English, will by definition score below the 40 percentile. I think this is a serious issue, and one that this committee should be looking at, and I would urge you, in considering the appropriations for the Office for Civil Rights, that you take these issues under very, very serious advisement.
Mr. PORTER [presiding]. Ms. Chavez, I apologize to you for being delayed, and I thank my colleague, Henry Bonilla, for chairing the opening of the hearing. I didn't hear all of the testimony, but that part that I did hear I clearly and strongly agree with.
At a time when young people in scientific judgment can learn a language easily, and if they aren't instructed in that language early, then the chances of doing so diminish. So it seems to me that you're going down a path that doesn't lead to success nearly as well, even with good intentions perhaps, and I think we're beginning to understand because people like you and Henry and others are speaking the truth about these matters. We're gaining an understanding that we have to change the principles underlying these programs.
Ms. CHAVEZ. Well, thank you very much, Mr. Porter.
Mr. PORTER. Thank you for coming and testifying.
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Mr. Bonilla.
Mr. BONILLA. Thank you, Mr. Chairman.
Ms. Chavez, as many people know, I'm an advocate of bilingual funds only to use in transitional cases to get kids to learn English as quickly as possible, and then to mainstream them. But this information that you're bringing forward to me is alarming. To think that an office could have their own political activist agenda is something that we're going to look at very, very closely this year.
My question that I have briefly is: How does their agenda that originates in Washington, how does that relate in some cases with what the parents want their children to learn in school?
Ms. CHAVEZ. Mr. Bonilla, I will be happy to provide for you a copy, which I will ask be put in the record, of a survey that we did of hispanic parents nationwide. This was done through a reputable polling firm, an outstanding polling firm. The survey itself was taken in both Spanish and English.
What we found is that more than 80 percent of the hispanic parents who were surveyed wanted their children to be taught English quickly. They wanted their children's lessons to be taught in English so they could be spending more time learning how to speak, read, and write English. This is in direct contrast to what the Office for Civil Rights is requesting.
You also are, I'm sure, aware of the efforts that are going on in California to put an initiative on the ballot that will allow voters to make a determination about bilingual education in that State. My organization has been contacted by dozens of parents around the country, and in fact we will be providing to the committee written testimony from several of these parents in New Mexico, in California, and we hope also in Colorado, parents who object to what is being done with their children.
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One of the most frightening things that we hear is that parents who do object go to their school district, go to their school, and rather than being given an objective analysis of what is best for their children, they are simply told, ''We know what's best for your children. Juan and Maria need to be kept in a Spanish language class.'' In some instances we're talking about children who come to school with English as their first language, and yet they, too, are forced to be put into Spanish language classrooms.
Mr. PORTER. Ms. Chavez, we very much appreciate your testimony this morning. Thank you for being with us and giving us your view on this very important issue.
Ms. CHAVEZ. Thank you, Mr. Porter.
Mr. PORTER. I'd like to welcome a group of high school students from the tenth district of Illinois, which happens to be mine, and a visitor from Austria there, right back in the corner over here. Thank you all for sitting in with us and visiting.
[The prepared statement of Linda Chavez follows:]
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
Offset folios 1222 to 1231 insert here
Thursday, January 29, 1998.
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WITNESS
DR. PETER SCHWARTZ, SOCIETY OF GYNECOLOGIC ONCOLOGISTS
Mr. PORTER. Dr. Peter Schwartz, president of the Society of Gynecological Oncologists, representing the Society.
Ms. DeLauro.
Ms. DELAURO. Yes. If I might just for a second, Mr. Chairman, with regard to the last panelist, I would hope that the committee would entertain information from both sides on the issue of bilingual education—there certainly are a lot of other people all over the country with various perspectives—and make a determination as to what is in the best interest of our youngsters in this country. I know, in all your fairness, that you will do that.
Mr. PORTER. Ms. DeLauro, I apologize. I didn't know you wanted to be recognized.
Ms. DELAURO. That's okay.
Mr. PORTER. I'm sorry.
Ms. DELAURO. No, I thought that was not the case, Mr. Chairman, but I, while not being shy, I'd like to say what I was going to say anyway. [Laughter.]
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In any case, I have really a delightful task here, and that is that I am very, very pleased to be able to introduce to you today Dr. Peter Schwartz. I'm so delighted that he could spare some time to be with us today.
Dr. Schwartz is chief of the Elvohaven Hospital Section of Gynecologic Ontology and the president of the Society for Gynecological Oncologists. He literally and truly is one of the Nation's premiere researchers in the area of cancer—over 100 publications to his name, 136 to be precise.
He has particularly focused on the areas of gynecologic cancers such as ovarian cancer, which has been overlooked for such a very long time. We still don't have, as the committee knows, and I know the chairman knows, a dependable test to detect ovarian cancer at early stages.
Dr. Schwartz helped me to beat this disease, and he brings together a traditional commitment to patient care, which strengthened my own resolve, but with a confidence and professionalism and determination to explore every single new avenue in order to save lives. I know that he saved my life. I know that, with his commitment to increasing research, that we'll save so many others.
I thank you for the opportunity to introduce him. I thank you, Dr. Schwartz, for being here today.
Dr. SCHWARTZ. Thank you, Congresswoman DeLauro and Congressman Porter. I am here today in my capacity as president of the Society of Gynecologic Oncologists, known as the SGO. The SGO is the only national medical specialty society devoted to the study and treatment of cancers of the female reproductive tract. The SGO has more than 750 members who specialize in providing comprehensive care for women with gynecologic cancers, including prevention, diagnosis, surgery, and all subsequent therapy.
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I'm extremely grateful for the opportunity to provide public witness testimony on behalf of the SGO in support of increased funding for the National Institutes of Health, and particularly the NCI. The written testimony I have submitted focuses on the instances of cervical, endometrial, and ovarian cancer and provides some examples of how additional research dollars are critically needed to improve prevention, diagnosis, treatment, and survival for the estimated 82,000 women who were diagnosed with a gynecological cancer in 1997.
My remarks this afternoon, however, will focus on ovarian cancer. Ovarian cancer causes more deaths than any other cancer in the female reproductive system. In 1997, an estimated 26,800 new cases of ovarian cancer were diagnosed, and an estimated 14,200 women died from ovarian cancer.
While early detection improves the chances that ovarian cancer can be treated successfully, early cancers of the ovaries rarely cause symptoms that women would notice or the symptoms are mistaken for menopausal ailments or intestinal illnesses. Early detection is complicated by the fact that the ovaries are deep inside the pelvis and cannot be seen directly without surgery. Small ovarian tumors are difficult for even the most skilled examiners to feel. In fact, there are no screening tests now available which are accurate enough to use in finding ovarian cancer early among women who have no symptoms.
Unfortunately, almost 70 percent of women with ovarian cancer are not diagnosed until the disease is advanced in stage. The five-year survival for these women is only 15 to 20 percent.
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More than ever, there's a need for greater awareness and understanding of ovarian cancer. Now is the time to establish an agenda for more research into the areas that will lead to improved prevention, detection, and treatment of ovarian cancer.
The PHS Office on Women's Health, the SGO, and the NCI, in an effort to put ovarian cancer at the forefront of our Nation's cancer research agenda, sponsored a strategic planning cancer conference on new directions in ovarian cancer research on December 8 and 9, 1997 in Washington, D.C. The purpose of the conference was to outline the priorities for ovarian cancer research over the next five years. The conference participants identified the following eight critical components as the priorities for the strategy for attaining a greater understanding of the disease and for which a commitment to increased funding and investment in biomedical research should be pursued.
The first critical component is to support greater educational efforts for both the physician and patient communities. Due to the fact that early detection of ovarian cancer is so difficult and warning signs are so often confused with symptoms of other types of abdominal or pelvic ailments, it is essential that primary care physicians and gynecologists, as well as their patients, become aware of the potential early warning signs.
The second critical component is support for the development of a solid infrastructure for the study of ovarian cancer. Increased funding for ovarian cancer research is essential not only for RFAs and the creation of a specialized program of research excellence, otherwise known as a SPORE, but also for the recruitment and retention of young investigators as well as trained investigators from other fields. Innovative mechanisms to protect time for clinical scientists to conduct research are crucial, especially in the managed care environment that medical professionals now must practice in.
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The third critical component is support for tissue procurement and banking. Tissue procurement and banking is an intrinsic part of clinical trials. By standardizing tissue collection and storage, we can then gather epidemiologic and follow-up data on ovarian cancer and correlate this data with molecular biological studies on the banked tissues.
The fourth critical component is support for identification of all genes expressed in ovarian cancers at all stages of the disease. This will facilitate the identification of molecular prognostic indicators, the identification of tools for early diagnosis, and the elucidation of the etiology of ovarian cancer.
The fifth critical component is support for the collection of data to evaluate the utility of current tumor markers such as CA–125 and current diagnostic imaging modalities on mortality of ovarian cancer in a multinational, randomized trial.
The sixth critical component is support for the development of a cohort study of patients at a genetically high risk for ovarian cancer.
The seventh critical component is support for an ongoing multinational evaluation of conventional therapy approaches to ovarian cancer.
And, finally, the eighth critical component, support for the development and evaluation of novel investigative approaches to ovarian cancer.
Congressman Porter, Congresswoman DeLauro, members of the subcommittee, I greatly appreciate your time and attention to the need for additional resources for research being conducted for improved prevention, diagnosis, and treatment for gynecologic cancers. The SGI and I look forward to working with you in the years ahead on behalf of women and their reproductive health.
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I'd be happy to answer any questions.
Mr. PORTER. The tyranny of the bell, Dr. Schwartz.
Dr. SCHWARTZ. I hear it. [Laughter.]
Mr. PORTER. Sorry, this is a new innovation for all of you who are testifying for the first time. We have not done this in the past. I don't know whether you had announced, Henry, that we were doing this. All right. Well, the reason is that it's simply because we have so many witnesses that want to testify.
Dr. Schwartz, you realize, I know, that this subcommittee has placed biomedical research at a very, very high priority in our deliberations, and you also know that Ms. DeLauro has been a leader on the subcommittee in pushing us on cancer research, and I know she will be in the future about any questions.
So thank you very much for coming to testify. Thank you so much, sir.
Dr. SCHWARTZ. Thank you.
[The prepared statement of Peter E. Schwartz, M.D., follows:]
[CLERK'S NOTE.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.]
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"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
DR. ERROL CROOK, AMERICAN FEDERATION FOR MEDICAL RESEARCH
Mr. PORTER. Dr. Earl Crook, associate professor at the University of Mississippi Medical Center, testifying in behalf of the American Federation for Medical Research.
Mr. Wicker.
Mr. WICKER. Thank you, Mr. Chairman, and members of the subcommittee. It is my pleasure today to introduce to the subcommittee a very distinguished citizen of the State of Mississippi. Dr. Errol Crook is a native of Monrovo, Alabama. He received his undergraduate degree from Yale, and did his medical school at Columbia. He is currently an associate professor at the University of Mississippi Medical Center in Jackson, where he has conducted extensive research in the areas of diabetes and hypertension.
Members of the subcommittee, you will soon realize why we are so delighted to have him at the University of Mississippi. Dr. Crook is going to testify today on behalf of the American Federation for Medical Research, and to discuss the challenges facing clinical research.
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Mr. PORTER. Dr. Crook, we welcome you. Thank you very much for coming to testify.
Dr. CROOK. Thank you, Mr. Wicker, for your kind introduction.
Good afternoon to the committee and Chairman Porter. The AFMR welcomes the opportunity to testify here today about the challenges confronting our Nation's clinical research effort.
I am Errol Crook, assistant professor of medicine. I wish I were an associate, and I will be soon, I hope—at the University of Mississippi School of Medicine. The American Federation of Medical Research is a national organization of over 6,000 physician scientists, primarily medical school faculty members who are engaged in basic, clinical, and health services research.
Our organization wants to express its deep appreciation for this subcommittee's strong support for the National Institutes of Health. However, it is important to assure that a significant portion of these additional funds be allocated to much-needed initiatives to strengthen NIH extramural clinical research programs. We commend subcommittee members Lowey, Wicker, Hoyer, Pelosi, and DeLauro for their leadership in sponsoring H.R. 3001, the Clinical Research Enhancement Act, authorizing additional funding for new clinical research, career development, and research project awards. The AFMR urges this subcommittee to move forward this year and propose additional NIH funding to revitalize our Nation's clinical research efforts.
Through clinical research, basic science discoveries are applied to the study of human physiology to research on a disease or a condition or do an initial study of a potential therapeutic intervention. It is critically important that steps be taken immediately to address the problems confronting clinical researchers and their patients. These include the loss of a generation of young clinical investigators faced with enormous medical school tuition debt and absence of a structured, well-supported training and career development program; the inability of academic medical centers to sustain internal mechanisms of support for clinical research because of cost containment required by fierce competition in the health care marketplace, and the declining infrastructure for clinical research, most notably the insufficient funding provided to the NIH-funded general clinical research centers.
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Funding is extremely limited for clinical research that may not offer a product payoff. Today, and for the foreseeable future, such research requires NIH funding. In addition, NIH funding is critically important for the training and career development of clinical investigators. In collaboration with Jackson State University and Tougaloo College, we at the University of Mississippi Medical Center are initiating a major study of cardiovascular disease in African-Americans, the Jackson Heart Study.
Our major difficulty in mounting and continuing this National Heart, Lung, and Blood Institute-sponsored study will be to recruit and sustain a sufficient cadre of clinical investigators to oversee the effort and interact with the patients.
In September of 1994, the Institute of Medicine of the National Academy of Sciences published a report on the opportunities and challenges confronting clinical research. The Institute recommendations are the foundation of the Clinical Research Enhancement Act, H.R. 3001.
More recently, in December of last year, the NIH Director's Advisory Committee on Clinical Research presented its report offering similar recommendations. Attachment 1, in the written testimony, is a side-by-side analysis demonstrating the close concurrence between H.R. 3001 and the Advisory Committee's recommendations.
The AFMR believes that this subcommittee must take action to provide additional funding for the initiatives that have been recommended by the Institute of Medicine, the NIH Director's Advisory Committee, and the 140 organizations that support H.R. 3001. This would require an additional $60 million, which is less than one-half of a percent of the NIH budget.
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In addition, the AFMR urges the subcommittee to take steps to increase substantially funding for the NIH-sponsored general clinical research centers across the country. These safe havens for clinical research are vitally important. Last year, in the report accompanying the Fiscal Year 1998 appropriations bill, this subcommittee expressed concern about the reductions made in the DCRC grants below Advisory Council-approved budgets. The subcommittee requested a report from the National Center on Resources as to the funding necessary to bridge this gap. For Fiscal Year 1999, the AFMR recommends a $215 million budget to bridge the average 25 percent cut below the Advisory Council-approved budgets for the general clinical research centers and to stabilize funding for personnel and training.
Please do not delay further. Just as you would move forward to rebuild the clinical research capacity on the NIH campus, please forward this year with much-needed investment in the extramural clinical research capacity of our Nation's academic medical centers.
Thank you for the opportunity to testify. I'd be happy to answer any questions.
Mr. PORTER. Dr. Crook, thank you for your testimony. Let me say that the Chair does not, as a matter of principle, co-sponsor legislation that might appear before this committee, even though members of the committee don't share this philosophy. So the fact that I'm not a co-sponsor of H.R. 3001 doesn't mean that I'm not necessarily for it or strongly for it.
Next Hearing Segment(2)