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The problems that you raise of attracting new investigators and young investigators and keeping them, protecting academic medical centers, clinical research centers, who are under siege because of the change in the way we deliver health care services in the United States, managed care looking elsewhere because of the costs for a lot of their contracts—those are problems that we're very much aware of and want to be helpful on, and of course your final point about the clinical research centers and their funding is one that we take very seriously and we'll do the very best we can.
Dr. CROOK. Thank you.
Mr. PORTER. Thank you very much for testifying today.
Dr. CROOK. Thank you.
[The prepared statement of Errol Cook follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
JANNINE CODY, CHROMOSOME 18 REGISTRY AND RESEARCH SOCIETY
Mr. PORTER. Jannine Cody, president, the Chromosome 18 Registry and Research Society, testifying in behalf of the Society. Ms. Cody.
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Mr. Wicker.
Mr. WICKER. Thank you, Mr. Chairman.
Let me just briefly say that Dr. Cody is from San Antonio and is almost a constituent of my colleague, Henry Bonilla, a few miles away from the district there. She's currently a post-doctoral fellow at the University of Texas, San Antonio, where, as you say, she's conducting research on chromosome 18 disorders.
I very much appreciate, Mr. Chairman, your moving Dr. Cody forward on the agenda this afternoon, so that I could be here for her testimony.
I have a particular interest in this disorder, and I think that some of the special voices that we may be hearing in the audience today are part of Dr. Cody's team. Some dear friends of mine from Mississippi, Lyle and Ruth Ann Williams, have a grandson, Michael Byce, born with chromosome 18 disorder. So I have a particular personal interest in this disease and in the testimony this afternoon.
Thank you so much.
Mr. PORTER. Thank you, Mr. Wicker.
Dr. Cody.
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Ms. CODY. Okay, thank you very much, Mr. Chairman and members of the subcommittee, and Mr. Wicker. Thank you for allowing me this opportunity to come here today and share some of our concerns with you.
My name is Jannine Cody, and I'm founder and president of the Chromosome 18 Registry and Research Society, the support group for families affected by chromosome 18 abnormalities. I live in San Antonio, Texas, as he said, and I'm accompanied by members of our board of directors from Chicago, Detroit, and some of our families that live in the D.C. area.
We're here today to ask you to re-evaluate the NIH funding priorities. Nationally, in our fervor to alleviate suffering and to ensure a long and healthy life, we've ignored our most needy and vulnerable citizens. We have focused our medical research efforts on prolonging the end of life without equal commitment to giving the people with mental retardation and developmental disabilities a complete life, a life of dreams and promise, and a life of independence instead of dependence.
Thirteen years ago, my daughter, Elizabeth, was born—here's her picture—with a severe cleft palate and cleft lip and foot abnormalities. A blood test revealed that these problems were caused by a chromosome abnormality called 18q-. This is a mental retardation syndrome caused by a missing portion of chromosome 18. The pediatrician gave us a photocopy from a medical textbook which made the following observation about our kids with 18q-:
It said, ''They are probably the most severely afflicted among carriers of chromosome abnormalities. They maintain the froglike position observed in infants and are reduced to an entirely vegetative and bedridden life.''
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But for us, our most immediate concern was repair of her cleft lip and palate, and to date she's had 12 surgeries and is about at the halfway point in the repair process. However, her first four surgeries, all before the age of 3, were complicated by her failure to heal properly. We now know that her healing problems were caused by growth hormone deficiency which also causes short stature. The eight surgeries she's had since being on growth hormone replacement therapy have healed perfectly.
She's had to face numerous surgeries to repair the complications resulting from her early failed surgeries because no one ever asked a simple question: Why are kids with 18q-short? So because of Elizabeth, growth hormone deficiency is now known to be a common feature of the 18q-syndrome, and hopefully, no child will ever have to endure the pain and trauma of unnecessary surgery and abnormal scarring.
It was this finding in my daughter that spurred me to find other parents and to see that research is done to determine the nature of our children's problems. I started the Chromosome 18 Registry and Research Society in an effort to bring families together who are affected by chromosome 18 abnormalities.
In order to ensure that the research done on these syndromes is clinically relevant and is translated into patient useful information, I earned a Ph.D. in human genetics, working on the 18q-syndrome. Our goal is to find treatments and not just supportive care for our children.
One of our main organizational goals is to establish a chromosome 18 clinical research center. We thought that if we as parents could gather preliminary data on the study of each of these syndromes, then these projects could move on to be federally funded. We would just have to get the ball rolling.
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Our families have invested more than $700,000 to generate preliminary results and this has not been enough. It's not been enough because the pot of NIH money available to study these syndromes in the Mental Retardation branch of the NICHD is disproportionately small. It is disproportionately small compared to the number of people affected by mental retardation and disproportionately small compared to the proportion of mental retardation caused by chromosome abnormalities. Details about the budgetary inequities and social burden are presented in my written testimony.
Since 50 percent of mental retardation is caused by chromosome abnormalities, and chromosome abnormalities have defined genetic etiology, they are the logical starting place for unraveling the mysteries of learning differences and mental retardation. The study of chromosome abnormalities could open many new vistas in cognitive neuroscience. What we would like for you to realize is that, by studying chromosome abnormalities, you would not just be helping our families, but you would be opening the door to understanding mental retardation and developmental disabilities.
Chromosome abnormalities can serve as the key to understanding mental retardation and fulfilling the promise of the human genome project, which has provided us with the scientific opportunity. With the promise of increased NIH funding in the air, please consider directing those funding increases in ways which will equalize research for the currently underserved populations, such as those with mental retardation and chromosome abnormalities. These are areas of research which have great scientific promise in a field where there is currently little expenditure. These syndromes carry a significant social burden with lifelong health care costs and entitlement costs.
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Thank you for the opportunity to testify before you today. I will be happy to answer any questions.
Mr. PORTER. Dr. Cody, this subcommittee wants to do everything it can to help, and I think that the subcommittee has in the last three years, in the face of very difficult budgetary times, has put biomedical research at a very high level in the priorities that we fund.
Ms. CODY. We appreciate that very much.
Mr. PORTER. I have to give you my sermonette at this point in time, all of you, because what we can do depends in the first instance upon what the Budget Committee gives us to work with. We're delighted to have you here telling us what we should do, but we want to direct you also to tell the Budget Committee what they should do.
Ms. CODY. Okay, we will do that.
Mr. PORTER. Because if we don't get that kind of allocation, we can't do——
Ms. CODY. Right.
Mr. PORTER [continuing]. The work that we think is necessary to be done.
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There is obviously a lot in what you said to us that touches our hearts, but there's also hope because there's so much wonderful science going on out there, that we can't come close to funding all of it, and what we need to do is fund more of it. So we, I think, are committed to doing that, but we need help to get the resources to actually accomplish it. So if I can lobby all of you, do your utmost to help us get the resources that we need to accomplish the kinds of goals that you want us to accomplish, and together I think we can do a great deal to give our research scientists the tools that they need to have the breakthroughs that will solve these problems for the American people, and all people, actually.
So thank you for coming to testify.
Ms. CODY. Thank you.
Mr. PORTER. We're going to do our utmost to do exactly what you want us to do.
Ms. CODY. Thank you very much.
[The prepared testimony of Jannine D. Cody 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
ROSALIE LEWIS, DYSTONIA MEDICAL RESEARCH FOUNDATION
Mr. PORTER. Rosalie Lewis, the president-elect, Dystonia Medical Research Foundation, representing the Foundation.
We're delighted to welcome our colleague, Louise Slaughter of New York. Thank you for joining us, Louise.
Ms. SLAUGHTER. Mr. Porter, Mr. Manzullo, I'm delighted to see you both.
Mr. WICKER. Now just a minute.
Ms. SLAUGHTER. Oh, Mr. Wicker, I'm sorry. [Laughter.]
I took my glasses off. Of course, I'm happy to see you.
Mr. WICKER. I can take a lot of things. [Laughter.]
Ms. SLAUGHTER. Well, I'm so happy to be here with you this afternoon, and I want to help you, too, to get more money from the Budget Committee, because I know you and I talked about this before, but we are right on the cusp of so many extraordinary discoveries in health care and in medicine, and it would be a shame for us to starve it to death at this juncture.
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But I'm here this afternoon because I want to introduce a constituent of mine, Rosalie Lewis, who's the president-elect of the Dystonia Foundation, a research foundation. I've known her for many years, and all of us who know someone like Rosalie are very fortunate. She has dedicated herself to make a real difference in our community. She's been an active volunteer in the community for 20 years. She's leading the local chapter of the National Council of Jewish Women, speaking out and helping children with developmental disabilities, and encouraging support for families through organizations like the Jewish Family Services.
The issue that is nearest and dearest to her heart is dystonia research. Mrs. Lewis has four beautiful children, three of whom have been diagnosed with dystonia. This heart-breaking neurological disease can make walking and motor functions a serious challenge or renders them impossible. Mrs. Lewis has not only dealt courageously with her family's personal challenges of coping with dystonia, but has worked tireless to marshall resources to unlock the mysteries of this relentless and incurable disease. While researchers have recently made important advances in understanding dystonia, Mrs. Lewis is here to tell you why so much more needs to be done.
So I'm proud to introduce Rosalie Lewis of Pittsburgh, New York, the president-elect of Dystonia, and say again my thanks to you and Congressman Wicker from Mississippi, one of our finest.
Mr. PORTER. Thank you, Representative Slaughter. We appreciate, Louise, your coming here and introducing Mrs. Lewis.
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Ms. Lewis.
Ms. LEWIS. Thank you very much, Congresswoman Slaughter, and hello again, Mr. Porter and members of the committee.
I am Rosalie Lewis, president-elect of the Dystonia Medical Research Foundation. It's my pleasure to be here today to tell you a little bit about dystonia on behalf of the Foundation.
First and foremost, I would like to thank this subcommittee for its generous funding of the National Institutes of Health in its Fiscal Year 1998 appropriations bill.
In 1985, the first of the three of my four children with dystonia was diagnosed. I had hoped that my 20-year-old son Benjamin, who was affected by dystonia since the age of 7, could have joined me today. However, dystonia has robbed him of the ability to walk unaided, to use his hands for any fine motor coordination like writing or playing his beloved guitar, and has now made speaking difficult. Like Ben, my son Dan, who is 17, first exhibited symptoms of this disorder at the age of 7, and like Ben, dystonia has now made walking independent a challenge.
The progression of early-onset dystonia is relentless and uncontrollable. That is why, on behalf of the 300,000 other children and adults, I am asking you for your help today.
Dystonia is a neurological disorder characterized by severe involuntary muscle contractions and sustained postures. There are several different types of dystonia. Generalized dystonia afflicts many parts of the body and usually begins in childhood. My sons Benjamin and Daniel have generalized dystonia.
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Focal dystonias affect one specific part of the body. My son Aaron has a focal dystonia of the hand. Secondary dystonia is the result of injury or other brain illness.
There is no definitive test for dystonia, and many primary care doctors have never seen a case of it. It is estimated that 85 percent of those suffering with dystonia are not diagnosed or have been misdiagnosed.
Treatment for dystonia includes drug therapy, botulinum toxin injections, and several types of surgery. However, these treatments are met with limited and variable success.
My children with generalized dystonia take huge dosages of drugs, making cognition difficult. But with the choice between walking and not walking, they choose to tolerate the drugs' side effects. Daniel also receives injections now directly into his abducta muscles of the vocal cords with botox, and thank God, he has been having some moderate success.
Since 1977, the Foundation has awarded over 285 medical research grants, totaling close to $15 million. Among the more significant results of this research are the discovery this past year of the DYT1 gene, which is the gene responsible for early-onset dystonia. In 1995, the identification of the gene for dopa-responsive dystonia. In addition, several drug therapies have been developed.
The discovery of the gene for early-onset dystonia was made by Dr. Xandra Breakefield, geneticist at the Neuroscience Center of Massachusetts General Hospital in Boston, and her collaborators. This breakthrough came after two years of dedicated research and over $1 million of contributions made by the Foundation. With the discovery of this gene also came the identification of the protein which plays a crucial role in the chemistry of dystonia.
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One of the Foundation's central goals is to educate the lay and medical communities about dystonia, so that people afflicted with the confusing symptoms of this disease need not go undiagnosed or misdiagnosed, as is so common now. We also continuously conduct and promote Medical Awareness Week, which this year will be taking place between October 11 and 18.
The Dystonia Medical Research Foundation recommends that the National Institutes of Health, the National Institute on Neurological Disease, Disorders, and Stroke, and the National Institute on Deafness and Other Communication Disorders be funded for Fiscal Year 1999 at a 15-percent increase over Fiscal Year 1998. This increase would be part of an overall request to double funding for the National Institutes of Health by Fiscal Year 2003. We would ask that this increase does not come from funding sources which would require budgetary cuts in other Public Health Service organizations.
Your help is desperately needed. Dystonia is the third most common movement disorder after Parkinson's and tremor. I'd like to repeat that: Dystonia is the third most common movement disorder after Parkinson's and tremor.
Hopefully, with the continuation of the necessary funding better therapies will be created which will help the hundreds of thousands of Americans who suffer from this debilitating disorder. Again, thank you for all the help that you have provided us in the past and for giving me the opportunity to speak here today. I would be honored if you had any questions whatsoever.
Mr. PORTER. Mrs. Lewis and Representative Slaughter, we are going to continue to do whatever we can to possibly raise the commitment to research that can mean that 15 or 20 years from now, or sooner, that there will be no more cases of this disease.
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I gave a short sermonette that I imagine you heard a minute ago. I want to add one thing to it. We often think that it's just the people here in this building that make public policy somehow, but we don't; we just ratify what people tell us back home. The message of this disease and others has to be gotten out there, so that people understand that it's such a serious matter that we need to mobilize national resources and that we need to put them into this kind of research. If we can all work on that—people intrinsically believe that, they have to know it specifically. They have to know why and how it's going to change things, and there's so much good science, as I said a minute ago, that is there. In fact, we are able to fund less and less of it, even though we're increasing funding more and more, because there's so much good science, that we need to get this message out to the American people that they need to impact each one of our offices saying: do this.
This idea of increasing, doubling research funding over the next five years is really something that we believe in and want to see happen. If that happens, it will happen here.
Ms. LEWIS. Well, we're trying.
Mr. PORTER. You're trying; we're trying. If we all work on it, I think we can achieve that goal.
Ms. LEWIS. I appreciate that.
Mr. PORTER. Thank you for coming to testify.
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Ms. SLAUGHTER. In the long haul, a healthier population will benefit us all, both financially and physically.
Mr. PORTER. Absolutely.
Ms. LEWIS. Thank you.
Mr. PORTER. Thank you very much. Thank you, Louise.
Ms. SLAUGHTER. It's a pleasure.
[The prepared statement of Rosalie Lewis follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
SCOTT HODGE, REPRESENTING HIMSELF
Mr. PORTER. Scott Hodge, the Grover M. Hermann Fellow, the Heritage Foundation, testifying in his own behalf. Mr. Hodge.
Mr. HODGE. Thank you, Mr. Chairman, distinguished members of the committee. My name is Scott Hodge, senior federal budget analyst at the Heritage Foundation. As many of you may know, the Heritage Foundation is a nonprofit, nonpartisan research think tank. We accept no government funding whatsoever.
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I suppose it's safe to say that my testimony, the tone of my testimony today will be slightly different than much of that you've heard today. I suppose I sort of feel like a heretic in a church service, but I guess because I'm here to remind us of the need for fiscal responsibility during a period, a fortunate period, of balanced budgets. Remarkably, because of the increased growth of the economy, we are able to nearly balance the Federal budget four years ahead of schedule. But, sadly, rather than encourage greater fiscal discipline, we see in many quarters of this town a decrease in fiscal discipline and a willingness to increase Federal spending—most notably, in some of the proposals by the White House two nights ago.
I think it would be a mistake to increase Federal spending and increase new programs without first fixing what ails existing programs. Balancing the budget is only the first step in fixing the fiscal health of the Federal Government. The next step must be reshaping Federal programs, so that they are capable of addressing the needs of the 21st century at the least possible cost to taxpayers. Too many government programs, as you know, were created to solve problems of another era, and reinventing these programs is not the answer. The American people do not want government programs simply to waste their money more efficiently. They want the problems fixed once and for all.
Three years ago, as you know, this subcommittee showed great courage in proposing the termination of 170 programs because they either showed no positive results, they were redundant, or they should be performed by lower levels of government. This is exactly the kind of litmus test that every committee in appropriations should apply to all of their programs. This is the kind of courage that I think it takes to restore fiscal discipline in the budget.
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As you begin to craft this year's appropriations bill, I should hope that we can reinvigorate the themes that were brought forward so powerfully in that bill three years ago, and there are many challenges ahead. I believe discretionary spending should be cut, not increased. This year discretionary spending in this particular appropriations bill has increased by $5 billion above last year's level. That's 9 percent increase—three times the rate of inflation. I think that balancing should not be used as an excuse to raise spending. Actually, it should be a chance to tighten our belts a little more.
Second, I don't believe the committee should fund programs that have not been authorized or in which their authorizations have expired. The Congressional Budget Office now tells us that Congress this year approved $115 billion for unauthorized programs in Fiscal Year 1998. Roughly $8 billion of that amount fell into the programs under the jurisdiction of this committee. If Congress had had the fiscal discipline perhaps not to fund just a fraction of those unauthorized programs, perhaps the budget would be in balance today, rather than $5 billion deficit.
Lastly, I believe the committee must confront the problems identified by the General Accounting Office, the agencies' Inspectors General, across these programs. The problems identified range from severe financial mismanagement, lack of management accountability, widespread program duplication and fragmentation, poor stewardship of government assets, and obsolete programs living on forever.
Many of these, of course, are familiar to this committee, I'm sure. The 165 job training programs scattered across government agencies, 131 juvenile programs at a cost of $4 billion a year. The President seems like he's ready to initiate more of these programs. Education, 788 programs, and counting. Statistical agencies, kind of an obscure little part of the budget, there are 70 different agencies in government that provide statistics, including many under this committee's jurisdiction.
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Lack of accountability is legendary in many of these programs, unfortunately. The safe and drug-free schools program, which many people would support, unfortunately, has seen monies misspent, such as in Michigan, where $81,000 was spent to purchase giant plastic teeth and toothbrushes. One point five million of this money was spent on a human torso for a class, and $11,000 of this money was spent on bicycle pumps.
While that's the absurd, there are very serious issues at hand as well. In the job training and employment services, for instance, the General Accounting Office found that almost 40 percent of Federal job training programs could not even count accurately how many people were going through their doors, and another 50 percent of these programs could not collect data on whether participants had obtained jobs after they completed the program. Of course, this is just the tip of the iceberg.
Let me conclude by saying that the Heritage Foundation last year prepared ''Balancing America's Budget,'' which used many of the same themes that you used in preparing your appropriations report three years ago: reduce and eliminate obsolete programs, consolidate redundant programs, and transfer programs that are most appropriately done by the States back to State and local governments. I think this is a fine opportunity, with a balanced budget, to restore fiscal discipline rather than let it loose.
Mr. PORTER. Mr. Hodge, let me say that I couldn't agree more with the general theme of what you're saying. I began my congressional career talking about the framework of fiscal responsibility, and if we don't operate within that framework and make our decisions within that framework, obviously, we will have gone, as we have gone for the last 30 years, in a very, very poor direction for the whole country. Everything we do has to be done with an idea that we work off a balanced budget and that, within that budget, we choose priorities.
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We also know that government has grown without restraint for a long, long time, and we're doing a lot of things we shouldn't be doing. We have programs that the Federal Government shouldn't be engaged in. We have programs that the Federal Government is engaged in that don't work. I can tell you—and I think this is true on all the Appropriations subcommittees—the environment here has changed greatly. Everything that we talk today is: do we get results for people?—not how many people are in the program, how many dollars are spent, do we have so many centers. We talk about what happens to the individual who's supposed to be being served by that program. Is that individual starting unemployed, let's say? Is he getting trained? Is he getting a job? Is he keeping the job? Is he supporting his family? That's the thing we're looking for.
We've just sent letters out, you may be interested, to each of the three Secretaries of the departments over which we have jurisdiction and each of the agency heads; we sent them out a couple of months ago actually, and we said, when you come in to testify, include in your testimony at the most prominent place the results that you're getting for the money that you're getting, because that's what we're going to ask you and that's what we want to know.
We also have the GAO coming in to testify——
Mr. HODGE. Right.
Mr. PORTER [continuing]. Looking at those programs that are under their jurisdiction and commenting, in their judgment, are they getting results from money? So we're doing it independently of the department or agency that is coming in to testify.
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GPRA we have been harping on a great deal last year; we will be on it this year. We're not to the results stage there, but I think the law is in place that will show us the budgetary guidelines that will help us get there eventually, and we're very strong on that.
I think the subcommittee has shown that we know how to eliminate programs; you said so yourself.
Mr. HODGE. Absolutely.
Mr. PORTER. There's programs that don't work. We have not been joined by our brethren and ''sistren'' in the Senate, as we would have liked to have been, but I think that we know that there are a lot of programs that really don't work and we do our best to try to get rid of them or consolidate them into broader programs that serve broader constituencies.
I'm not sure—I am sure; I can't agree that we shouldn't fund programs that are not authorized. Unfortunately, authorizers don't do their work, and they see our bills as vehicles for their being able to put on policy choices that they wouldn't take up in their own subcommittees. They'll take them up on the floor in an amendment, but they never take them up in terms of a bill. So there's always this tension between authorizers and appropriators. We can't force them to do their work; they have to do. Programs should be authorized; the whole concept is to have authorized programs, but if we have to wait for them, I'm afraid nothing would ever get accomplished. They choose to avoid contention and put it onto our bills, where it raises its ugly head and we keep saying, leave these things off of our bills; do your own work, but we never get there.
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The careers legislation has passed the House strongly. That will get rid of all those 163 job training programs and get us into a few good ones that we can evaluate easily, that will reach out to people and give the help to them that they need, and get results.
The bottom line on all of this is that our job is to choose within a framework of fiscal responsibility a balanced budget, priorities for our country, and so I don't think what you were saying is at all at odds with what people here are saying. They're simply saying, among those priorities, these are the ones we believe are the most important priorities. It's your job to take the responsibility for fitting them within that framework and making certain that we get ourselves to a balanced budget.
I'd like to say that Congress has done so well that we've gotten to a balanced budget; we'd all be lying to ourselves if we said that. Congress has helped. What has gotten us to a balanced budget, and we're about to get there, I think, is a really strong economy that is performing beyond anybody's expectations, and we're all saying, how can we keep this thing going and make certain that it continues into the future? Because if it does, then we will have resources to do the kind of research that people are saying we really ought to do.
In respect to biomedical research, this is something that really cannot be funded in the private sector. We'd like to think it could. It's basic research. It's not applied research. Most of it is basic research. It's the foundation upon which our pharmaceutical and biotech companies in America can build those pharmaceuticals, those procedures, those new ways of approaching disease that get results for people. So this is something government has to do. I think government not only has done this well over a long period of time, but it is an investment that pays for itself a thousand times over.
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I will mention only one thing that is mentioned often. The health care cost savings from the discovery of the Salk vaccine has paid all of the costs of the research conducted through NIH over its entire 50-year history, one discovery. If you look at the tens of thousands of discoveries that we've had through NIH-funded research, you know that this is really cost-effective investment, and I think something that the American people very, very strongly support—but within a framework of a balanced budget. I sure agree with you.
Thank you very much for your testimony. I'm sorry to give you my long sermon there——
Mr. HODGE. I appreciate it.
Mr. PORTER [continuing]. But I think we're doing our job, or at least we're certainly trying hard to do it.
Mr. HODGE. Thank you.
[The prepared statement of Scott Hodge follows:]
Offset folios 1309 to 1320 insert here
Thursday, January 29, 1998.
WITNESS
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POLLY SPARE, VOICE OF THE RETARDED
Mr. PORTER. Polly Spare, president, the Voice of the Retarded, testifying in their behalf.
The Chair recognizes Mr. Istook.
Mr. ISTOOK. Thank you, Mr. Chairman. I'll be very brief.
I appreciate Ms. Spare taking the time to be with us today. Where do you come from, Illinois?
Ms. SPARE. No, my offices are in Illinois; I live in Pennsylvania.
Mr. ISTOOK. Okay, I understand. Your office is in Illinois. I knew that would be of interest to the chairman.
Ms. SPARE. I hope so.
Mr. ISTOOK. Ms. Spare has been involved in efforts on behalf of the retarded, both as a mother and as someone who cares very deeply about the needs and concerns of others who either are retarded or have retarded persons in their family or among their friends. I think she has an important message to make sure that our well-intended efforts don't become misguided efforts.
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I appreciate your taking time to be with us.
Ms. SPARE. Thank you, sir. I appreciate the introduction.
Mr. Chairman, members of the subcommittee, I appreciate the opportunity to testify before you today about Voice of the Retarded and our experience with State protection and advocacy, developmental disability councils, and university-affiliated agencies. The issue of accountability among these groups has been of great concern to me, as president of Voice of the Retarded, as a parent of two profoundly retarded adult family members, and a tax-paying citizen who is painfully aware that my tax dollars may be financing activities aimed at eliminating developmental centers as one quality residential option from most disabled population.
My concern stems from the fact that the three programs I had mentioned engage in activities that promote total deinstitutionalization. The litigation activities of protection and advocacy agencies are of most concern and have directly resulted in the closure of some State-operated facilities. I will continue to refer to the three groups as the DD Act programs. Established by the Developmental Disabilities Assistance and Bill of Rights Act, the DD Act, they are authorized to receive Federal funding through the Department of Health and Human Services: over $108 million in Federal dollars in 1997, the same amount, reportedly, for 1998.
With all Federal grants, funding is appropriated with conditions imposed. There are two conditions of the act that I feel have not been met and warrant further investigation. The act's amendments of 1993 resulted in House Energy and Commerce Committee Report 103–378. Report language indicated that the act not be read as a Federal policy supporting the closure of residential facilities. The committee clarified what, in fact, mirrors VOR's mission. Many, but not all individuals with mental retardation are appropriately served in community-based residential settings. The act's statutory language under policy also places, as a condition for funding, the recognition that individuals and their families are the primary decisionmakers regarding the supports received and the policies developed on behalf of individuals with mental retardation.
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There is growing evidence that deinstitutionalization is not in the best interest of all individuals with MR. VOR is learning of higher abuse, neglect, and mortality rates for individuals inappropriately and hastily transferred from developmental centers to community-based centers. The national leaders of the DD Act programs, with the support of the former Commissioner of the Administration on Developmental Disabilities, Robert Williams, worked closely with VOR to address the lack of quality assurance standards and community programs. The progress that we made had less to do with communication and cooperation, but it was a worthwhile objective. Former Commissioner Williams also devoted agency funds for a more successful national project which I co-chaired, aiming at empowering parents. We are truly grateful for his open mind and willingness to work with VOR to enhance mutual respect and a cooperative agenda.
Some State DD Act programs continue to leverage their Federal dollars to help accomplish total deinstitutionalization. Protection and advocacy agencies have filed class action lawsuits in California, Connecticut, Maryland, New Mexico, Utah, Florida, Iowa, Washington State, and twice in Michigan, and served as intervenor in a Texas class action suit. I know of no similar action to correct the widespread programs plaguing some community-based programs.
In other DD Act programs, some other DD Act programs also engage in anti-institutional programs, using their Federal dollars. This year the Utah Governors Council for People with Disabilities, a DD Act program, will spend over $203,000 for legislative advocacy. Washington State, New Mexico, and Arkansas councils offer similar examples of lobbying activity.
Are Federal funds actually being used for these activities prohibited by the DD Act and other Federal laws? Whether or not the DD Act programs use public or private funds for their lobbying activity, the Federal grants certainly free up other funds to pursue deinstitutionalization interests.
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VOR receives absolutely no public money, State or Federal. I was provided the opportunity to testify before the Subcommittee on National Economic Growth in June of 1995 on a similar topic: lobbying by groups receiving Federal funds. I stated then, and I state now, there is a larger question that looms: just how much Federal money are these groups receiving, and how are they held accountable for the use of these funds? How does the Federal Government assure that the money it invests in groups is used as intended?
It is an answer even the Secretary of the Department of Health and Human Services, Donna Shalala, has a difficult time answering. In response to a written inquiry regarding the amount of HHS appropriations spent on class action litigation against State-operated facilities, sent by Representatives Edwards and Wamp, Secretary Shalala responded, ''Program information on how individual cases are resolved indicates that very little money goes toward litigation.'' There's a great concern that the Secretary's records do not reflect the class action litigation activity in nine States which appears contrary to the directives of the DD Act. This is especially appalling when one considers the very facilities being sued are certified and funded through another HHS program, medicaid.
The executive director of the National Association of Protection and Advocacy Systems wrote an angry letter to VOR stating, quote, ''Just because you and your colleagues do not like the results of our activities does not mean that funds have been misspent.'' What he is forgetting is that every taxpayer, including VOR's members, must have the opportunity. We understand that these groups objected to language that was submitted last year, and it was dropped. We wonder what there is to hide.
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I thank you, Mr. Chairman, for your willingness to take a closer look at this issue. It deserves your serious consideration. I thank you and members of the subcommittee for your attention.
Mr. PORTER. Ms. Spare, I'm sure that you're aware that at the heart of this issue is the underlying law——
Ms. SPARE. Yes.
Mr. PORTER [continuing]. Over which we don't have jurisdiction. On the other hand, we do have jurisdiction over the funding of the advocacy line items, and this is a point that I feel certain that Representative Istook is going to raise in our markup, if not before. My own experience is that I agree with most of what you've said, that there are some serious problems in this area that need to be addressed. We always hope our authorizing brethren and ''sistren'' will address them, but, as I said to the previous witness, often they don't, and that leaves it to us to attempt to do what we can about it. So I think the issue will be raised in our markup and we'll see what might happen among the subcommittee members.
Ms. SPARE. I appreciate that very much.
Mr. PORTER. Thank you for testifying.
Ms. SPARE. Thank you.
Mr. PORTER. Thank you.
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[The prepared statement of Poly Spare follows:]
Offset 1329 to 1341 Insert here
Thursday, January 29, 1998.
WITNESS
RUSSELL J. STRATTON, THE AMERICAN ASSOCIATION OF DENTAL SCHOOLS
Mr. PORTER. Russell J. Stratton, D.D.S., dean of the University of Oklahoma College of Dentistry, testifying in behalf of the American Association of Dental Schools. Dean Stratton.
Dr. STRATTON. Thank you, Mr. Chairman. I'm Russell Stratton, Doctor of Dental Surgery and dean of the University of Oklahoma College of Dentistry. On behalf of the American Association of Dental Schools, I'm pleased to have the opportunity to present our Fiscal Year 1999 funding recommendations for the health professions training and research programs, which are especially important to dental education.
Mr. Chairman, at a time when many decry the shortage of primary care health professionals, and in a search for programs that will attract generalists, we're very proud of the general dentistry residency program which is a cost-effective primary care success story. General residency dentistry training provides graduates with primary care training and clinical experience to serve the broad community of patients. As you mentioned earlier, results are what count. In this particular case, 87 percent of those students who receive general dentistry training remain in primary care practice, and these dentists, who have had the benefits of this training, make fewer referrals to dental specialists, and that's especially important in rural and underserved urban communities, where logistically and financial barriers make specialized care unobtainable. So it is a success story.
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At my school, the Federal investment in this primary care training program means that many low-income children see a dentist for the very first time. The general dentistry residency programs provides a significant amount of free dental care through the Friendly Smiles Program, in which needy children are identified by the county and referred to our dental school clinic for treatment and preventive oral health services.
Our residency program was created through this Federal start-up grant in the late 1980s, and it has been self-sufficient ever since. In fact, it has enlarged at its own expense with no additional funding from the Federal Government.
The AADS urges the subcommittee to fund this cost-effective and proven primary care program at $4 million in Fiscal Year 1999. We would also urge the subcommittee's support for expanded funding for this program to accommodate pediatric dentistry, children's dentistry, training, if this change is adopted through the reauthorization process.
Next, the Ryan White HIV/AIDS dental reimbursement program accomplishes two major Federal objectives in the fight against AIDS: first of all, support for essential oral health services for patients of limited means and, secondly, clinical experience for dental students and residents in the care and management of people living with HIV/AIDS.
The Ryan White HIV/AIDS dental reimbursement program represents a true partnership between the Federal Government and dental education programs in which the Government partially offsets the cost of these programs incurred by serving by disproportionate share of indigent AIDS patients. However, because the award we receive from this program covers less than 50 percent of the uncompensated costs we incur, our dental schools are very concerned about our ability to maintain this current level of service in our communities.
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Unreimbursed costs will continue to rise as the number of HIV patients increase and as the HIV/AIDS population lives longer. Very early on in the epidemic, dental care was directed toward eliminating infection and pain using procedures which had the least likelihood of exacerbating the patient's already fragile condition. But with the advent of multiple-drug therapies, many patients are living longer, and they require an increased scope of dental intervention. Patients now need periodontal procedures, or gum therapy; they need root canals and advanced restorative procedures such as crowns, bridges, and dentures. The AADS recommends a $1.2 million increase for the Ryan White HIV/AIDS dental reimbursement program, resulting in a total budget of $9 million in Fiscal Year 1999.
We also strongly support the National Health Service Corps scholarship and loan forgiveness programs. In recent years, the Congress recognized the need to increase dental participation in the National Health Service Corps. There has been some progress in meeting the dental demand for loan repayment awards, but the agency still has not awarded any dental scholarships in the recent several years. We hope the subcommittee will renew its efforts to encourage the National Health Service Corps to expand its oral health initiative.
The AADS also urges your continued strong support, for title VII health professions programs play a crucial role in our ability to recruit and retain minority and disadvantaged students in dentistry. We request the funding levels for these programs recommended by the Health Professions and Nursing Education Coalition, of which AADS is a member.
Finally, Mr. Chairman, on behalf of the AADS and the University of Oklahoma, I want to express our gratitude for your leadership in the area of biomedical research. We endorse the testimony of the American Association for Dental Research regarding priorities in funding for the National Institutes of Dental Research in Fiscal Year 1999.
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Thank you for the opportunity to testify. I'd be pleased to answer any questions you might have.
Mr. PORTER. Dr. Stratton, thank you for your good testimony.
One comment: Mr. Bonilla of our subcommittee has been one of the strongest advocates of the health professions. You need to talk to the people over on the other side of the rotunda about that, though. The Senate has not been nearly as strongly supportive as we have, and I think that if you can get a chance to talk with them, it will help.
Dr. STRATTON. We'll give it our best shot.
Mr. PORTER. Thank you, Dr. Stratton.
Dr. STRATTON. Thank you.
[The prepared statement of Russell Stratton follows:]
Offset folios 1348 to 1359 insert here.
Thursday, January 29, 1998.
WITNESS
JEFF JACOBS, AIDS ACTION COUNCIL
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Mr. PORTER. Jeff Jacobs, director of government affairs, representing the AIDS Action Council.
Mr. JACOBS. Mr. Chairman, members of the subcommittee, I wanted to start by introducing my colleagues, Javiar Salizar and Julio Abru who've joined me here at the table.
I'm Jeff Jacobs, director of government affairs for the AIDS Action Council, the national voice for over 2,400 community-based AIDS service providers. The council does not receive any Federal funding. Our work is supported by our members and individual donations.
This subcommittee is directly responsible for the dramatic advances in the care, treatment, and research of HIV disease. The advances of the past few years would not have been possible without the funding this committee has appropriated. It is clear that your investment in HIV and AIDS programs is beginning to return big dividends. AIDS deaths are dramatically declining. Powerful new drugs have restored health and hope to hundreds of thousands of people with the virus, and research is progressing on new drugs and vaccines to treat and prevent HIV disease. In fact, the research you invested in at NIH earlier in the decade is translating into the care and treatment provided by the Ryan White Care Act. Its emphasis on early treatment, comprehensive health services, and the provision of drugs is literally saving people's lives. Your continued investment in the Ryan White Care Act is urgently needed.
Despite the existence of Federal AIDS programs such as the AIDS Drugs Assistance Program, Medicaid serves as the foundation of AIDS care through its provision of both comprehensive health care and drug therapies, however, most low-income individuals who are HIV positive are not eligible for Medicaid because they do not meet the programs disability standards or other categorical eligibility requirements. Low-income people with HIV must get sick with AIDS before they qualify for Medicaid. Not being eligible for Medicaid contradicts the need that HIV positive individuals have for access to the new treatments and care. Early intervention for people with HIV is now accepted as a standard, recommended by NIH, and is cost effective.
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You may be wondering why I'm mentioning Medicaid, Mr. Chairman. This year, AIDS Action proposes that this committee allocate funds in the health care financing administration's budget to support a Medicaid demonstration project for States that choose to pursue an expansion of Medicaid eligibility to low-income HIV positive individuals.
Despite all the progress, there is disturbing news that demonstrates the urgent need for new investments in prevention. According to a new study co-authored by Yale University, 87 percent of young people do not believe they are vulnerable to getting the AIDS virus. The survey also found that over half the respondents could not name HIV risk factors. These startling statistics could be one reason why the CDC estimates that between 40,000 and 80,000 Americans will be infected with the HIV virus in 1998.
Preventing HIV infection must be a national priority. People become infected with HIV either because they do not realize they are at risk or do not really know how to protect themselves from the virus. New targeted prevention efforts are urgently needed to prevent new infections. Increased funding for the CDC's HIV prevention efforts will enable States and localities to implement locally determined prevention plans developed by health departments and the community. The HIV prevention community planning process gives States and localities the flexibility they need to design targeted prevention strategies. It is far less expensive to prevent someone from becoming infected in the first place than to care for that person once they are infected.
This raises the need for our Nation to get dirty needles off our streets. A 1997 NIH consensus panel concluded that needle exchange programs prevent the spread of HIV and do not increase illegal drug use. Secretary Shalala must retain her authority to federally fund these programs which have been endorsed by the American Medical Association and the American Public Health Association.
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Last but not least, we urge this committee to increase funding for the substance abuse treatment block grant. Much of the disproportionate increase in HIV infection rates among women, communities of color, and adolescents can be attributed to substance abuse. Increased funding for substance abuse treatment is desperately needed to help slow the spread of the virus.
In conclusion, we urge this committee to continue to provide leadership by increasing funding for these programs that save lives. Thank you for this opportunity to testify.
Mr. PORTER. Mr. Jacobs, the subcommittee has certainly put Ryan White, the public education portion of the effort to prevent AIDS and others at a very high priority. I'm sure we will continue to do that. At the moment, as you know, on the needle exchange issue, there was an attempt to address that that really left the issue in the hands of the authorizing committee, and I think they have six months in which to act. I met with Dr. Bealenson who's running a very fine program in Baltimore that impressed me a great deal, and we hope that we can that issue resolved sometime soon and reasonably. I think you're exactly correct; that's a very important aspect of this that we need to pay great attention to. Thank you for testifying today.
Mr. JACOBS. Thank you, Mr. Porter.
Mr. PORTER. We appreciate it very much.
[The prepared statement of Jeff Jacobs 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
DR. GARABED EKNOYAN, NATIONAL KIDNEY FOUNDATION
Mr. PORTER. Garabed Eknoyan, M.D., president, National Kidney Foundation, Professor of Medicine at the Baylor College of Medicine in Houston, Texas, testifying in behalf of the National Kidney Foundation. Dr. Eknoyan.
Dr. EKNOYAN. Chairman Porter, thank you. I'm Garabed Eknoyan, president of the National Kidney Foundation, otherwise known as the NKF, the Nation's largest voluntary health organization devoted to the care of patients with kidney disease as well as the prevention and cure of diseases of the kidney and urinary tract.
I'm here today representing more than 30,000 lay and professional volunteer constituency of the foundation. The NKF is a member of the Council of American Kidney Societies, and we support the testimony that has or will be presented by the other members of the council: the American Society of Nephrology, the American Society of Pediatric Nephrology, the American Society of Transplant Physicians, and the Renal Physicians' Association.
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The National Kidney Foundation is most appreciative of the support that the committee has provided to the National Institute's of Health, NIH, during the last few years. We know that the members of the committee have been faced with difficult funding decisions for many worthy programs, and we thank you for making the NIH a priority. We are particularly appreciative of the 7.5 percent increase that the committee provided to the National Institute of Diabetes and Digestive and Kidney Diseases, NIDDK, for the Fiscal Year 1998.
Resolutions have been introduced in the House and Senate in support of doubling the funding of NIH over five years. We are encouraged by this broad and growing support throughout Congress. We urge the appropriate committees including the House and Senate Budget Committees to support this effort through the identification of additional resources beginning in Federal year 1999. This additional funding is essential to maintain our country's lead in the scientific investigation at a time when traditional sources of funding from the mental investigation and clinical research are diminishing and threaten to disappear—and I am sorry if I took this out of your sermon, Mr. Chairman.
For Federal year 1999, we would like to request a 15 percent increase in the appropriation for NIDDK. This commitment of additional resources is needed to continue the support of new opportunities for improving the health of Americans which by medical research has provided and continues to offer today. To that end, we would like to recommend some new opportunities in research and challenges in the area of kidney disease and to solicit your support for them.
Today, I would like to discuss two of the more important of these issues. Others are listed in the statement that was submitted. The first is proteinuria which is protein in the urine. There are 300,000 Americans with a irreversible kidney failure or end-stage renal disease, commonly termed ESRD, who require dialysis or a transplant to survive. We estimate that there are ten times as many individuals who have detectable protein in the urine which is an early indication of progressive kidney disease well before the presence of any other clinical or laboratory evidence of the problem. These Americans should become the focus of new attention for intervention and prevention. If these individuals with early kidney disease manifested by protein in the urine who are more likely to progress to ESRD are not attended to their cause will be downhill. More importantly, there is a much larger number of individuals who have protein in the urine, whose kidney disease will not progress to ESRD, but who are still at greater risk of heart attack and stroke than Americans without evidence of protein in the urine. How many? No one knows for sure right now, because not enough work has been done in this important public health area. We estimate the numbers to be in the millions, somewhere between 10 and 30, and it's hard to estimate it exactly. Nevertheless, very few of these individuals are identified or receive the care and attention that could prevent their morbidity and premature mortality. We need to know more about the incidence and prevalence of proteinuria as well as the efficacy of the interventions which could address this public health problem.
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The National Kidney Foundation is strongly committed to that goal. We recommend that the kidney division of the NIDDK be encouraged and provided support to gather basic epidemiologic information on this high risk segment of the population and to accept explore the appropriate strategies for the early identification and treatment of those at risk.
The second issue I'd like to cover briefly is that of nutrition. Other than age, nutritional status is the most potent predictor of mortality in patients who are on dialysis. Unfortunately, malnutrition is a common complication of chronic dialysis patients and occurs in 40 percent of these individuals. These poorly nourished patients are more susceptible to infection and are more likely to be hospitalized than other patients. We recommend that the NIDDK sponsor a demonstration project in conjunction with the health care financing administration which would document the efficacy of the various interventions that are currently available in improving the nutritional status of end-stage renal diseased patients.
Mr. Chairman, I hope that this testimony has emphasized the importance of research and its potential for preventing kidney disease and improving the lives of kidney patients. I'd be pleased to answer any questions you may have or to provide any additional information the committee may wish. Thank you again for this opportunity to address the committee.
Mr. PORTER. Dr. Eknoyan, you have helped to educate us as so many of us our witnesses do. I sit here and, I think, gain a great deal more than any of you do, because you give me insights into what is happening in your various fields of medicine, and we have so many people of prominence like yourself who come before the committee that it's a real education for me. We hope to translate that knowledge into actions that help people in their lives, and we very much appreciate your coming to testify. My wife suffers from diabetes; obviously, I'm focused on the risks that are inherent in that disease, and one of which is severe kidney problems, and so I'm very appreciative of the opportunity to hear you and to know what your concerns are. We will do our best to meet them, and thank you for coming to testify.
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Dr. EKNOYAN. Thank you very much.
[The prepared statement of Garabed Eknoyan, M.D., follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
MARY KAYE RICHTER, NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIA
Mr. PORTER. Mary Kaye Richter, executive director of the National Foundation for Ectodermal Dysplasia, representing the foundation.
Ms. RICHTER. Thank you, I'm always delighted when someone can say that name correctly.
Mr. PORTER. You see how I'm getting educated here?
Ms. RICHTER. Yes, and, obviously, our previous visits have done exactly that.
In the past, I've talked a great deal about the ectodermal dysplasia—as you may recall, these are individuals who don't have a lot of hair, teeth, sweat glands, and nails—but today, I want to be a little more general in my comments as I see some programmatic concerns regarding rare conditions in and of themselves.
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Through this hearing, you will listen to many individuals who espouse the doubling of the budget for the National Institutes of Health within the next five years and to begin that process with a 15 percent increase for year 1999, something with which we certainly agree. While some people would encourage you to earmark dollars for specifics of these entities, I would urge you to leave such decisions with the leadership of the NIH. It would indeed be unfortunate if research funding was prioritized by the effectiveness of lobbying rather than the effectiveness of science.
Once the diagnosis of a rare condition has been made, families encounter incredible challenges as they search for useful treatment information and knowledgeable care providers. Only the savvyest will make their way to organizations like ours. What happens to those families for whom no advocacy organizations exist? What happens when there are no available clinicians to make a diagnosis? What happens then when the effects of a condition exacerbate as a result? What happens when there's no place to turn, and you have no hope? How does it feel to bury a child?
In 1988, the National Commission on Orphan Diseases conducted a survey that indicated that 46 percent of the families affected by rare conditions endure from one to five years of searching before arriving at a diagnosis.
There is an office that is in a position to make a difference for families in such dilemmas, the Office of Rare Diseases within the NIH. Currently, there are more than 100 special research centers as identified by individual NIH institutes across the United States. I am asking you to enable the Office of Rare Diseases to select a minimum of 15 of these as diagnostic research centers for rare disorders that would focus on diagnosis and treatment.
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A key function of the office of the rare diseases is the sponsorship of scientific workshops. One workshop focused on the ectodermal dysplasias. It was a landmark event as the National Institute of Dental Research, The National Institute of Arthritis, Muscle, Skeletal, and Skin Diseases, and the National Institute for Child Health and Development along with the Office of Rare Diseases joined together as co-sponsors. The symposium was a revelation to the SNBs as the overlap of key biological issues became apparent. It is clear that improved understanding of the developmental biology associated with ED with help unlock the doors of knowledge to human development.
Currently, the Office of Rare Disease sponsors, or co-sponsors, approximately 30 workshops per year. With thousands and thousands of rare conditions, the number of workshops must be increased. Increasing the budget of the ORD by just $500,000 for workshops would significantly increase the number of rare disorders that are examined each year.
The Office of Rare Diseases could also serve as a much needed focal point to identify who is doing work in a particular rare disease entity. Currently, families can only guess where they might go for help. It would be much better to have a resource at hand that could elucidate critically needed care and research information. Currently, the ORD has a budget of $1.6 million. I implore you to make this office what it needs to be by increasing this budget to at least $4.8 million.
Both scientific and clinical research is needed to improve our understanding of and treatment for rare disorders. It is important to remember that although a condition being investigated may be rare, successful research may have tremendous impact on a much larger number of individuals. For example, the NIDR sponsored a program that placed dental implants into the jaws of 50 individuals affected by ED. Not only did the project underscore the value of implants in a dentureless adult, it also supported the procedure for use in children.
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It is important to note that the research at the National Institute for Dental Research has had an additional benefit. The NFED, thanks to cooperation from several outstanding dental schools, their staffs, and Implant Innovations, Inc., and NovoBiocare, a manufacturer of implant components, offers special implant programs to the dental schools association with Southern Illinois University, the University of North Carolina, and the University of Washington. The private sector has now picked up that which was begun in the public sector.
Although the bulk of my testimony is devoted to funding for the NIH the value of the general dentistry residency program is worthy of comment. The program not only improves the depth of training for dentists but also enables individuals needing specialized care to identify practitioners and programs where help may be available. Diet, speech, self-esteem, business success and employment are all impacted by the condition of the mouth. We support the position of the American Association of Dental Schools for funding of at least $4 million with a caveat that additional funds be added should the reauthorization bill include pediatric dentist training as I hope it will.
One last concern that I would like to share with you is inadequate funding to get investigators to begin their research as follows: during their fellowship projects may begin for which financial support is lost at the end of the fellowship. There needs to be a system whereby fellowships involving rare disorders can be expanded with adequate financial support when warranted. My list could go on and on.
Mr. Chairman, I know that you are well aware of the anguish of parents whose children are affected by rare conditions. My hope is that you will spearhead an effort to increase the role and budget of Office of Rare Diseases, and like everyone else who has been here, we applaud and thank you for all of your efforts on behalf of biomedical research.
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Mr. PORTER. Ms. Richter, thank you. We rarely hear someone say leave these decisions to science, because obviously one wants to advocate that their concerns are more important than any other, but I would like to reinforce what you've said. All of us have strong opinions that we want factored into this process, and we express them through the report; we express them to the institute directors that come before us to testify; to Dr. Varmus directly, but in the end, we know that their judgment, the judgment of science, is a better judgment than the judgment of politics. We also realize there's politics in science, but I think anyone who has ever dealt with NIH always comes away as we do with a feeling that they listened; that they're fair; that they try to respond to people's concerns just as much as we do, and I think your message that, in the end, that's the process that we have to trust, and we have to simply give them the resources they need to do these things, and they will follow the best opportunities and the greatest needs and will listen to all of us. They'll listen to you, and they'll listen to us too, but we can never tell them, ''We direct you to do this,'' because then we're stepping on a jurisdiction that really isn't ours. We have the authority but not the jurisdiction.
Ms. RICHTER. I appreciate your understanding of that. I think it's something that I've come to only after years of being involved with the institutes both as a member a research advisory council and as a lay advocate. I appreciate your thoughts.
Mr. PORTER. Thank you for your testimony.
[The prepared statement of Mary Kaye Richter 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
ELLEN GLESBY COHEN, LYMPHOMA RESEARCH FOUNDATION OF AMERICA
Mr. PORTER. Ellen Glesby Cohen, president and founder of the Lymphoma Research Foundation of America, testifying in behalf of the foundation.
Ms. COHEN. Good afternoon, Chairman Porter. My name is Ellen Cohen. I'm honored to be here today as founder and president of the Lymphoma Research Foundation of America, the Nation's largest organization dedicated to providing comprehensive information and support to lymphoma patients, their family and friends.
The Lymphoma Research Foundation of America also finances research into better and safer treatments for the third most rapidly rising cancer in the U.S. Although this disease claims more victims everyday and although understanding lymphoma could shed light on many other diseases, funding for lymphoma research amounts to just 2 percent of the National Cancer Institute's budget. We are looking to this subcommittee for the hope and strength we need to persevere in our battle against this killer called lymphoma.
I'd like to share with you the story of my own battle with lymphoma as a way of illustrating just how crucial your work is. In 1987, my husband, Mitch, and I were the proud parents of an 18-month-old daughter, and we were waiting for our second child to be born. My husband's internal medicine practice was growing, and I was a busy T.V. commercial producer. Life was good except for the nagging tiredness I constantly feel. It also seemed that I got the flu or a cold every time I turned around. The lymph nodes in my neck kept swelling up, and my feet were very swollen. I went to the doctor but blood tests did not reveal anything suspicious.
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My son, Josh, was born in October of 1988, and when I didn't bounce back from the birth and lumps kept growing on my neck, my husband sent me to an oncologist. She took one look at me and sent me straight to the hospital for a biopsy. A week later, we had an answer, but it wasn't the answer we wanted to hear. I had lymphoma, cancer of the lymph system, and it's incurable.
At the time, I wasn't even 40 years old. My doctor said to go on with my life. I was sick they said, but not sick enough to receive aggressive treatment at the time. But how do you act like nothing is happening to your family when cancer is lurking in your body?
Somehow, we made it through a year and a half. Eventually, I developed a 99 percent obstruction in my nasal pharynx, and I could hardly breathe. It came time for me to experience high-dose chemotherapy, and within days of that first treatment I was back in the hospital with a collapsed immune system. I had just five white blood cells left in my body. I didn't even have the strength to hug my children.
Eventually, the therapy did its job, but it wasn't medicine that gave me the will to fight, it was the statistics behind this devastating illness. Lymphoid malignancies strike upwards of 85,000 Americans each year, and there is a 50 percent mortality rate. It is one of the most rapidly rising cancers in America today. Yet it seems that no one knows much about it. Even the scientific community is not sure what causes it, and at the time of my diagnosis there was no national organization funding research, educating the public, or supporting patients.
I had to do something, so I picked up the telephone and began calling everyone I knew. Each phone call led me to someone else: another doctor, another patient. Those conversations convinced me that I could start a non-profit organization that could make a difference, not just for myself but for the health of all Americans.
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You see this disease knows no boundaries. Anyone can get it: a former first lady, a former senator, a professional hockey player, two of my neighbors. Approximately 600,000 Americans today are living with lymphoid malignancies. Some days it feels like I hear from all of them at once. I have to fight back the tears when I hear from a 23-year old graduate student from Illinois who tells me that she's relapsing after only a year of remission, and she's running out of safe and effective treatment options.
I started the foundation to raise money, but what is priceless is the hope we have raised. We started the first lymphoma-specific support groups, internet site, patient help line, and quarterly newsletter. To date, the Lymphoma Research Foundation of America has funded 43 lymphoma research projects totaling more than $1.25 million at top cancer centers and universities across the country, however, lymphoma is a growing, serious public health problem.
Recent research shows that there are links between understanding the causes of lymphoma and understanding the causes of many other cancers including leukemia, lung, breast, and prostate. We are finding that there are several crucial scientific issues that require immediate attention such as the links between viruses and bacteria with lymphoma and the role of environmental toxins in triggering lymphoma.
The Lymphoma Research Foundation of America has achieved a lot, but this disease is formidable. It is a formidable opponent, and it strikes us in the very prime of our lives. Of all cancers, lymphoma is the fourth largest killer of men ages 25 to 60 and the fifth largest killer of women in the same age group. Sixty percent of all childhood malignancies are lymphoma related diseases.
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The good news is that scientists believe that lymphoma research will unlock the secrets to many other cancers. That is why for Fiscal Year 1999, Mr. Chairman, we seek the subcommittee's continued support in funding the research essential to finding better treatments and a cure for lymphoma. In furtherance of this goal, we request that Congress increase appropriations for the National Institutes of Health, and, as a first step, the Lymphoma Research Foundation of America joins the ad hoc group along with the other research organizations in supporting a 15 percent increase for the NIH Fiscal Year 1999. Further, we support doubling of the NIH budget in five years.
For the National Cancer Institute, the foundation supports the institute Fiscal Year 1999 bypass budget request of $3.191 billion. The foundation requests that this subcommittee include in its Fiscal Year 1999 committee report language specifically calling for increased appropriations for lymphoma research; use of all available mechanisms for expanding the scope of research including convening a scientific workshop to examine the current state of lymphoma research and exploring opportunities for additional study; use of program announcements and requests for applications on lymphoma-specific research topics, and research into potential environmental and other factors responsible for lymphoma.
Thank you very much for the opportunity to tell my story, and than you for your hard work and your consideration.
Mr. PORTER. Ms. Cohen, I've lost, just this past year, one of my close friends—a man I went to college with years ago—to lymphoma, so I realize, I think, a little bit about what you're telling us, and we will, as I said before, we're going to do our best to meet that goal. If we don't get the resources to do it this year, we're going to fight to get them next year, but we're going to stay with it.
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Ms. COHEN. And we'll do all we can too.
Mr. PORTER. Absolutely. Thank you.
Ms. COHEN. Thank you.
[The prepared statement of Ellen Glesby Cohen follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Now, let me say that we have reached four o'clock which is the time we intend to finish. We are just a little more than half way through our witness list. There are nine witnesses left. I have appointments waiting back in the office as well. I apologize to all of our witnesses for being this far behind. Unfortunately, we had a very long morning that lasted until one o'clock, and I had appointments between one and two that got us even further behind. We're going to take a short break at this point, and then come back, and we're going to try to be—I'll try to be as efficient as I can in listening to each of the remaining nine witnesses and not delay you any longer than we already have.
The subcommittee will stand in recess for five minutes.
[Recess.]
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Thursday, January 29, 1998.
WITNESS
RITA CARTY, TRI-COUNCIL FOR NURSING
Mr. PORTER. Rita Carty, DNSc, RN, dean of the College of Nursing and Health Science at George Mason University in Fairfax, Virginia, testifying in behalf of the Tri-Council for Nursing. Ms. Cary, welcome.
Ms. CARTY. Thank you, Chairman Porter and members of the subcommittee; good afternoon. I am Rita Carty, dean of the College of Nursing and Health Science at George Mason University in Fairfax, Virginia. This testimony is abbreviated from my full statement, and I request the full statement be printed in the record.
I present the Fiscal Year 1999 funding recommendations for nursing education and research of the Tri-Council for Nursing. The Tri-Council is composed of four major nursing organizations: the American Association of Colleges and Nursing, the American Nurses Association, the American Organization of Nurse Executives, and the National League for Nursing.
First, I want to thank you, Mr. Chairman, and the members of this subcommittee for the Fiscal Year 1998 funding levels for the programs critical to nursing education and research: The Nurse Education Act, scholarships for disadvantaged students, the National Institute of Nursing Research at NIH, the Agency for Health Care Policy and Research, the National Health Service Core Scholarship and Loan Program, and others. We can assure you that these needed funds will be spent to improve the public health.
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Last year, the President's Fiscal Year 1998 budget made adequate funding of these vital programs a real challenge for us all. We hope that the numbers will be much better in the administration's Fiscal Year 1999 proposal.
For Fiscal Year 1999, for the NEA, the Tri-Council respectively requests an increase of 8 percent over Fiscal Year 1998 to a level of $70.92 million. For SDS, we seek an increase also of 8 percent to $20.235 million. For NINR, we recommend a 15 percent increase to $73.136 million. For ACPAR, we ask an increase of 6 percent of $155.221 million. For the National Health Service Core Scholarship and Loan Repayment Program, we seek an increase over Fiscal Year 1998 of 5 percent to $82.074 million. Please let me explain our reasons.
In terms of the Nurse Education Act, NEA is a key source of Federal financial support for nursing education programs and nursing students. The NEA primarily seeks to encourage preparation of advanced practice nurses for underserved populations. The fact is that the NEA is the sole source of Federal support for advanced practice nursing education. The APNs include nurse practitioners, certified nurse midwives, clinical nurse specialists, and certified registered nurse anesthetists. These well-trained professionals are highly sought after by hospitals, community-based health care centers, and other providers. The NEA funds programs to educate APNs and future nursing faculty; offers modest stipends to masters and doctoral students, and seeks to help disadvantaged students obtain nursing education.
The NEA encourages linking training to the delivery of primary care to underserved populations, assisting continual education in rural areas and encourages schools to increase enrollment. It offers repayments of academic loans for nurses that agree to practice of nurse shortage such as public hospitals, community health centers, American Indian facilities, and public health service facilities.
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The NEA fosters programs to prepare nurses to meet the health care system's need for nursing professional to address sicker patients in tertiary care sites; people living longer with chronic conditions, and often complex health care needs of an increasingly elderly population. NEA programs have incentives for schools to train for work with underserved populations. NEA funds serve as Federal leverage to reward schools and students for meeting work force needs of our rapidly evolving health care system. Whatever that system ultimately becomes, nursing professionals will continue to provide needed health care services.
More specifically, NEA assisted the development and expansion of 60 percent of current educational programs preparing nurse practitioners for primary care. Ninety-five percent of NP graduates work in primary care, and 44 percent of NPs have at least 25 percent Medicaid patients in their caseloads. NEA supported about half of the doctorly-prepared nursing faculty teaching today, and I'm a product of funding of NEA.
NEA provided stipends in 1997 to almost 37 percent, or over 12,000 full-time graduate nursing students and 267 grants totaling $15.6 million. The NEA significantly increased the number and retention of minority nursing students and faculty boosting the number of minority nursing graduates by 25 percent over the past 5 years. NEA funds facilitated development and or operation of 50 percent of currently operating nurse-managed health care centers that serve diverse populations of minorities, elderly, schools, housing complexes, and homeless people. It supported 80 percent of certified nurse mid-wifery programs and 89 percent of certified midwives serve low-income women. It helped train certified registered nurse anesthetists, and these are the people who are the sole providers of anesthesia services in 70 percent of our rural hospitals.
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With an eye to the future, NEA sponsored and collaborated on research on nursing work force to help maintain a relevant educational focus and production level. An NEA project at ACT, the Loyola University of Chicago's School of Nursing, prepares primary health care nurse practitioners in women's health to work with women in high-risk populations on mental health, chronic diseases, violence, early detection of cancer, access to care, and other issues.
Another NEA grant seeks to increase the number of disadvantaged and minority nursing graduates at Prairie View A&M University in Texas. Several NEA programs use special mentoring and academic assistance to help nursing students complete their courses of study and then return to underserved areas to practice nursing.
At the Marquette University College of Nursing in Wisconsin, NEA funds support a pediatric nurse practitioner clinical specialist program that will graduate APNs capable of providing high quality, cost-effective primary and preventive care to children living in poverty.
The NEA supports a new family nurse practitioner program at the University of Arkansas College of Nursing and has generated 38 graduates, half of whom practice in medically underserved areas.
Mr. PORTER. Ms. Carty, I know you have several pages left there. We're not going to be able to hear it. Can you reach your conclusion?
Ms. CARTY. Yes, sir. In conclusion, the Tri-Council wants to thank the subcommittee for its support of nursing education and research in the past, and we hope that you will continue to support nursing education and research in the future, and I would answer any questions.
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Mr. PORTER. We will, we definitely will. Thank you for your testimony.
Ms. CARTY. Thank you.
[The prepared statement of Rita Carty follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
DR. JOHN H. LYNCH, AMERICAN UROLOGICAL ASSOCIATION
Mr. PORTER. John H. Lynch, M.D., staff director of the Division of Urology at Georgetown University Medical Center in Washington, D.C., representing the American Urological Association. Dr. Lynch.
Mr. LYNCH. Mr. Chairman, I'm Dr. John Lynch, chief of the Division of Urology at Georgetown University Medical Center. I had previously had the privilege of testifying before this subcommittee several years ago on behalf of prostate cancer research funding. That was immediately after the death of someone who was a patient of mine; who I became friendly with over the years that I took care of him, and who was well known to this subcommittee, Phil V. O'Contee.
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I am pleased today to have the opportunity to present the recommendations of the American Urological Association for Fiscal Year 1999 funding for urology research at the National Institute of Diabetes and Digestive and Kidney Diseases and the National Cancer Institute. I will summarize my written statement that has been submitted for the record.
On behalf of the AUA, I want to thank the Congress, this subcommittee, and especially you, Mr. Chairman, for your strong support of NIH and the CDC and for your continuing interest in neurologic science. The increase in Fiscal Year 1998 funding for these key health agencies is very welcome and is deeply appreciated by the entire research community. The recognition by Congress that the activities of the agencies must remain critical priorities for the Federal Government is important for all of our citizens.
This morning, representatives of the AUA attended a White House briefing with other cancer research advocates, and heard Vice President Gore announce plans for a major increase in spending for cancer research at the NIH. We welcome this commitment and urge Congress to work with the administration to support and enhance these initiatives. The AUA will work closely with this subcommittee and the administration to achieve this goal. We will take this message to the congressional budget committees and the leadership of the Appropriations Committee to make sure that the dollars will actually be to your subcommittee to fund new cancer research.
It is our hope that the impact of urologic cancer will finally be fully recognized and a generous share of these funds will be quickly available to catapult of our understanding of prostate, bladder, and kidney cancers. These cancers are a significant public health problem as 50 percent of cancers in men are urologic in origin. The research needs and opportunities are great in this area, and funding levels have not kept pace. A significant infusion of funds will greatly accelerate work in this area, because we would be able to capture the developments in other basic science fields and apply them to the particular questions of urologic cancers.
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I would like to report on the state of funding for basic urologic science at NIDDK. Despite the generous increase provided to NIDDK this fiscal year, the institute has chosen to restrict urology to 3 percent growth. Because of previous funding decisions at NIDDK, the urology program has actually lost ground. The AUA is very concerned by this situation. We have recently been assured that future increases will at least parallel the growth in the institute's budget. This is encouraging, but we ask this subcommittee's help to make sure that the commitment can become reality.
This subcommittee had called on NIDDK to begin work on a women's urological program, recognizing the important impact these diseases have on women's health and the paucity of research activity in this area. The recent conference explored the many clinical and scientific issues, and we trust that NIDDK will use this experience to build a strong initiative in the next year. The AUA hopes very much that the subcommittee will review this situation carefully with the NIH when the agency's leadership presents testimony.
We believe that many of the problems with urology research are due to the lack of focus for urology at NIH. Until recently, grant applications in urology were being sent to as many as nine institutes with possible review by any of over 20 study sections, none of which had any expertise in urology. This subcommittee has addressed this issue in the past, and I would like to bring you up to date on some of the recent developments.
NIH has created a urology special emphasis panel to review grant applications. The AUA is encouraged by the early progress of this panel. However, we continue to recommend the concentration of urology research into fewer institutes as well as the reduction in the number of study sections reviewing urology applications. These remaining study sections should be expanded to include additional urologic scientists to ensure that the necessary expertise is there to have adequate peer-review of the application.
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Recently, NIH assured us that this reconfiguration can be achieved. We believe that the changes can be made within the year, and we will look to you for counsel as we proceed in our discussions with NIH.
Mr. Chairman, that completes my testimony. I would be glad to answer any questions.
Mr. PORTER. Dr. Lynch, thank you very much. We do share your concern, and we will work with you on that. Thank you very much.
Dr. LYNCH. Thank you very much.
Mr. PORTER. Thank you very much for testifying.
[The prepared statement of John Lynch, M.D., follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1997.
WITNESS
RONNIE B. LANCASTER, ASSOCIATION OF MINORITY HEALTH PROFESSIONS SCHOOLS
Mr. PORTER. Ronnie B. Lancaster, MD, JD, President of the Association of Minority Health Professions Schools, testifying on behalf of the association. Mr. Lancaster?
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Mr. LANCASTER. Thank you, Mr. Chairman, and good afternoon.
I am Ronnie B. Lancaster, Senior Vice President for Health and Social Policy at the Morehouse School of Medicine, but today appear as President of the Association of the Minority Health Professions Schools.
Mr. Chairman, these schools are responsible for having trained fully over 50 percent of the Nation's black physicians and dentists and 75 percent of the Nation's black veterinarians.
Mr. Chairman, I would like to make three points in summary of my testimony. However, before beginning, I would like to first thank you for your leadership and thank this subcommittee for their record of support of those programs which have allowed our institutions to train these individuals who serve in underserved communities.
I'd also like to say at this time, Mr. Chairman, that I consider it a point of particular privilege to thank this subcommittee for the work of Congressman Louis Stokes. Congressman Stokes has not only well represented the citizens of Cleveland, the residents of Ohio, citizens of this Nation, but is clearly a hero in representing the interests of poor and minority citizens in this country and helping to ensure adequate access to healthcare services.
Now, Mr. Chairman, three brief points. First, I would like to express our appreciation for your support and the support of the subcommittee for the Title 3 Program, Title 3 of the Higher Education Act administered by United States Department of Education. As you know, Mr. Chairman, this is a program that provides very important support to enable our institutions to strengthen development offices, libraries, and important infrastructure such as information-technology programs. This is an important program, Mr. Chairman, and, without exaggeration, represents the difference between keeping our doors open in our institutions.
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Second, as the subcommittee knows, managed care has transformed and continues to rapidly transform the healthcare landscape. It has caused many changes around the country and has important implications for all medical schools and their faculty-practice programs, and it is no exception for the faculty-practice programs at the institutions that I represent. As a result of the support of several programs at Health and Human Services, our institutions are in the process of assessing the opportunities and the challenges that our plans face in this new managed care environment. Mr. Chairman, you should know that the average medical school in this country receives fully somewhere between 30 and 60 percent of its operating revenues from their faculty-practice plans. Unfortunately, the faculty-practice plans at our institutions contribute between 0 to 5 percent. And so clearly there is much work to do, and we ask the subcommittee's support for additional funding of $1.5 million for the Office of Minority Health to assist us in continuing and completing this analysis.
Finally, Mr. Chairman, we are all proud of the caliber of research being carried out under the direction of the National Institutes of Health. Our institutions are strong supporters of additional funding for NIH. However, as you may know, participation among African-American researchers and also Hispanic researchers is quite modest. In 1993, the Chronicle of Higher Education reported that African-American researchers received less than four-tenths of 1 percent of funding from NIH and Hispanic researchers received less than 1.6 percent research dollars rewarded competitively from NIH.
As we contemplate substantial increases in the NIH budget, I believe that we have an unprecedented opportunity to help ensure the full participation of competent researchers from these communities which represent the most at risk and sickest among us. We recommend, Mr. Chairman, the establishment of a research endowment program to assist those institutions which have both a mission and a record of caring for poor and minority citizens, and now, where those institutions participate now only modestly in NIH funding, to assist them in building research programs to help ensure the fuller participation of researchers conducting scientific inquiry into those diseases which disportionately affect poor and minority citizens.
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Mr. Chairman, it has been a pleasure and an honor to appear before you today. I appreciate the opportunity.
Mr. PORTER. Ronnie, I probably ought to explain that Ronnie and I know each other very well. Ronnie is a very good friend of my son David. So I usually don't call the witnesses by their first names
Ronnie, the words that you said about Louis Stokes were so absolutely true. And learning of his planned retirement has been a great blow to all of us. I don't know how we'll do without him. He's been on this subcommittee and an active and strong leader of this subcommittee for longer than I have been in Congress. I haven't had a chance to express that publicly and to Louis, but we're going to miss him a great deal. As you know, he, in the last year of his service in Congress, will continue to provide the kind of leadership and representation that will help us to address the issues that you have raised in your testimony.
So, thank you for coming to testify. I'll pass along your good words about Louis to him. And it is really good to see you.
Mr. LANCASTER. Thank you, Mr. Chairman.
[The prepared statement of Ronnie Lancaster follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
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WITNESSES
J.E. CHAVEZ PAISLEY
STEVEN C. MALLORY, NATIONAL COALITION FOR HEART AND STROKE RESEARCH
Mr. PORTER. J.E. Chavez Paisley, Volunteer Liaison, Stroke Connection, Incorporated, accompanied by Steven C. Mallory, Stroke Support Web Site Coordinator, testifying on behalf of the National Coalition for Heart and Stroke Research. Thank you both for being here.
Ms. PAISLEY. Hello. I am J.E. Chavez Paisley of Pennsylvania. I represent the National Coalition of Heart and Stroke Research. Our coalition's 14 organizations represent over five million volunteers and members nationally.
I'll read a message for you written by Marylander, Steven Mallory.
''I signed up to serve my country at 18, right into the infantry. I got married when I was 19; honorable discharge at 22; started my college education part-time at night; worked full-time during the day. The two kids were born. We bought a house. I graduated in 1992. Things were going great.
June 20, 1994, I was in France. A 36-year old FAA representative heading up a team of Martin Marietta aerospace engineers on the airbus thrust reverser. My whole life, including that of my family's immediately changed. I had a brain-stem stroke.
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The area that controls motor skills was severely damaged. Nine out of the twelve cranial nerves that control the body don't work anymore. Breathing, eye movement, bowel and bladder control, and paralysis from the nose down.
Now, my life is completely different. I regained some movement. I must rely on my wheelchair 100 percent. My speech was gone. Today, I have a lift in my mouth and teflon inserts on my vocal cords to help me speak. Cognitively, I'm not damaged.
My life is only what I and my family make of it. I cannot do what I used to do: comb my hair, brush my teeth, scratch an itch or blow my nose. They are done for me. I am completely dependent.
Internet is my link to the outside world. I have made many stroke friends. The most frequently asked question is, ''Why? Why me?'' Will my children have to ask that question?
Research can provide the answers for these questions. I came here to ask you to increase the funding for stroke research. Thank you.''
Steven is one of the 4 million stroke survivors in our country, 4 million. There are almost 60 million Americans who have cardiovascular disease. Cardiovascular disease or stroke will hit one out of every five of your constituents. You who are day-in and day-out held responsible for our country's bottomline must know that our 1998 epidemic will cost our country $274 billion in medical expenses and lost productivity.
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At the age of 41, I was hit by a massive cerebral hemorrhage, four aneurysms and a stroke. My heart flatlined twice, but it was restarted by a defibrillator. I was partially paralyzed and totally blind. I crawled on all fours. Two brain surgeries later, two eye surgeries, and three quarters of a million dollars later, I realized that I was one of the lucky ones, the rare ones. My damage occurred in an area of the brain that allowed for ample recovery.
Heart disease is our Nation's number one killer for both men and women. And stroke is our number three killer and our number one disabler. It is a silent epidemic. Survivors, like Steven, are not marching, not pacing outside your office, not waiting until you get off—take—not waiting for you to take him off hold while you finish your report. No, they have been silent. You may have the time to consider these testimonies, but the person whose brain is attacked 53 seconds from now won't.
The coalition knows the difficult choices that you have had to make in the past few years to sustain this Nation's commitment to medical research and the NIH. We thank you, Chairman Porter, and the subcommittee for its strong support for medical research funding. The coalition supports a 15 percent increase in funding for the NIH in the Fiscal Year 1999 as the first step to doubling the NIH budget over the next five years. Sixty million Americans who suffer with cardiovascular disease and the National Coalition for Heart and Stroke Research is also asking you to provide a 15 percent increase in funding for heart and stroke research for NHLDI and NINDS. You will save our country money and hurt. After all, what good is a country without a heart or a brain.
We thank you very much for your time.
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Mr. PORTER. Ms. Paisley and Mr. Mallory, I say this often, but all of us who are members of this subcommittee don't consider these matters in a vacuum because all of our families have been touched. My mother died of congestive heart failure after a series of strokes. My father died of a massive heart attack at a relatively young age. They touch every family. All I can say is that we are going to do the very best that we possibly can to reach those goals, and nothing, I think, is of higher priority than doing so. So, we're going to do everything that we possibly can.
Ms. PAISLEY. Chairman Porter, I think that probably one of the problems is that most people can see stroke and heart attack as just a senior's problem. And there are infants, there are people who are 36 years old who are getting it.
Mr. PORTER. Oh, absolutely.
Ms. PAISLEY. Thank you so very much.
Mr. PORTER. Thank you.
[The prepared statements of J.E. Chavez Paisley and Steven Mallory follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
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WITNESS
SHIRLEY COLETTI, NATIONAL COALITION OF STATE ALCOHOL AND DRUG TREATMENT AND PREVENTION ASSOCIATIONS
Mr. PORTER. Our next witness is Shirley Coletti, DHL, President of Operation Par, Incorporated testifying on behalf of the National Coalition of State Alcohol and Drug Treatment, Prevent Associations and Legal Action Center.
Ms. Coletti.
Ms. COLETTI. I thank the chairman.
I am Shirley Coletti, and I'm very sorry that Mr. Young and Mr. Miller aren't here today because Mr. Young has literally saved our program time after time and has been one of the great supporters. And of course, we serve many of Congressman Miller's constituents.
Mr. PORTER. Ms. Coletti, Mr. Miller was here.
Ms. COLETTI. I know.
Mr. PORTER. I'm afraid I'm well over our time limit.
Ms. COLETTI. I realize that.
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Mr. PORTER. Mr. Young, because he is the chairman of a major other subcommittee, he doesn't usually attend our hearings. He is just too busy.
Ms. COLETTI. I realize that. We've been in touch with his office.
Mr. PORTER. We excuse him. I hope you will also. [Laughter.]
Ms. COLETTI. As you said earlier, I am representing the National Coalition of State Alcohol and Drug Treatment Programs and Prevention Associations as well as the Legal Action Center.
Through Federal funds and other funds, the programs that I'm representing provide services to addicted parents and pregnant women who want better futures for their children; addicted individuals in the criminal-justice system; and those who can move to a sober and a crime-free life; and millions of children and adults at risk for developing alcohol and drug problems.
Thank you, Mr. Chairman and the subcommittee, for last year's increases in alcohol and drug treatment and prevention research programs, and thank you especially for refusing to cut treatment dollars for alcohol and drug programs. Providing strong support for alcohol and drug treatment, prevention, and research is imperative to maintain and to improve the health and well-being of our country. These programs effectively decrease alcohol and drug use, crime rate, healthcare costs, AIDS, and welfare dependents.
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I understand, as you were talking earlier today, about the need for results-driven programs, and I think that this field is becoming very cognizant of the importance of making sure of outcome results being available to—in order to really justify the expenditures that are requested.
The programs in Florida and around the country such as Par have been leaders in developing effective programs for women, for youth, and other underserved populations. With the help of Congressman Young last year and the year before, and with your committee, programs like Par Village, which is a residential, actual village which allows mothers who are suffering drug dependence to have at least two of their children in residence with them to go through residential treatment with at least an 80 percent success rate and a very low recidivism rate. So it is with those kinds of programs that we feel we are really making a major contribution. But on any given day, just in the State of Florida, there are over 1,400 individuals and families that are still in need of substance-abuse treatment services such as I am representing today. These people really represent just a small portion of the number of people that are in need.
As the States implement their welfare-reform programs, the demand for substance-abuse services will increase, especially for women with children. In most of our research, we find that at least 16 to 20 percent of individuals on welfare have alcohol and drug dependency. It is imperative that they have sufficient drug treatment and alcohol treatment if, in fact, we are really going to be successful with our welfare reform issues.
Robert Rector, the welfare expert at the Heritage Foundation, reported in the September and October issue of the Intellectual Ammunition that drug treatment programs improve job training readiness. Clearly, the availability of alcohol and drug programs and prevention services must increase if we are going to be successful.
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I would like to make some recommendations for providers to supply the essential services in our State and throughout the Nation. We need your continued support. We urge Congress to adopt the following increases for Fiscal Year 1999 funding for alcohol and drug treatment, prevention and research programs under the Substance Abuse Mental Health and Administration, SAMHA, the Department of Education, and the National Institutes of Health. These are wise investments that will provide desperately needed services for communities across the country. $1.564 billion in the substance abuse prevention and treatment block grant represents a 15 percent increase over Fiscal Year 1998 including the $50 million appropriated for the contract with the American Advancement Act, $180 million for the Center for Substance Abuse Treatment, CESAT and the Center for Substance Abuse Prevention, CESAP and the horrible name of knowledge development and application projects—I don't think any of us like that. Let me just quickly tell you that this is not the time to be cutting back on spending for those knowledge development and application projects. The congressional support for increasing drug abuse research over the past ten years has produced an enormous base of knowledge regarding the treatment. With that base of knowledge, and with these knowledge development application programs that are going on all over the country, for the first time, I, who have been in this for 28 years, can begin to see the coming together and really the effective use of knowledge development after research-based programs.
I thank you for your time. I know that today is of timeless goings. So, any questions I would be happy to answer.
Mr. PORTER. Ms. Coletti, thank you very much. I agree with you, that is a strange name.
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Ms. COLETTI. It's awful.
Mr. PORTER. You can work on that.
Ms. COLETTI. I'm trying very hard.
Mr. PORTER. Thank you again. I would imagine that it is fair to say that almost every family in the United States has been touched by problems with alcohol or drugs and I think that we all realize the importance of it and what it costs our society, not just our families, but our whole society.
Ms. COLETTI. It's devastating. I started 28 years ago because I had a daughter that I discovered at 15 years of age was experimenting with drugs. That daughter is now a post-doctoral fellow student and under a National Institute of Drug Abuse Grant, and she is doing fantastic research in the area of perinatal addition. So, it does work.
Mr. PORTER. It does work.
Ms. COLETTI. Thank you.
Mr. PORTER. Thank you so much.
[The prepared statement of Shirley Coletti follows:]
"The Official Committee record contains additional material here."
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Thursday, January 29, 1998.
WITNESS
CHARLES E. YOUNG, STATE COMMISSION FOR THE BLIND
Mr. PORTER. Charles E. Young, Administrator, State Commission for the Blind, testifying on behalf of the Council of State Administrators of the Vocational Rehabilitation.
Mr. YOUNG. Thank you, Mr. Chairman.
''What do you do for a living?'' is a common question upon introduction. Can you imagine not having a reply? For in employment is how we, as adults, define ourselves. Our occupations determine with whom we associate, where and how we live. Our jobs are a source of identity, self-worth and association. Yet a recent Harris poll indicated that two out of every three American adults with disabilities are unemployed. The same Harris poll concluded that to have a disability and be unable to attain employment is the true meaning of being quote, ''handicapped,'' in our society.
Clearly, we have yet to extend the American dream of inclusion and full participation in society to many citizens with disabilities. Without hope of employment or the training to live independently, disabled Americans are denied the opportunity to contribute to and fully experience our Nation's greatness.
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Limited fiscal resources have so restricted the Nation's rehabilitation efforts that today State vocational rehabilitation agencies are able to serve only one in twenty eligible individuals with disabilities. While the United States annually spends in excess of $200 billion maintaining citizens with disabilities we allocate less than $2.5 billion on rehabilitation leading to employment.
Clearly by allocating more funds to vocational rehabilitation programs we can save hundreds of millions of dollars on maintenance. Simply put, vocational rehabilitation can be seen as a $2 billion response to a $200 billion problem. With adequate funding, State and Federal Government, in partnership with the consumers of rehabilitation services can create a climate in which Americans with severe disabilities will meet the challenge of becoming participating, contributing members of our society.
Approximately 200,000 such Americans with disabilities are annually placed into employment by our program. Our efforts to streamline the vocational rehabilitation process to be even more responsive were recently recognized by Vice President Al Gore through the presentation of the Hammer Award.
It is said that what good government does best is invest in the protective independence of its citizenry. Our rehabilitation programs place unprecedented faith in the abilities of disabled Americans by investing in their career choices. The Rehabilitation Act enables Americans with disabilities to become productive, independent citizens and contributors to their communities. In essence this is the best of what America has to offer.
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On behalf of your partners in rehabilitation, we at the Council of State Administrators of Vocational Rehabilitation applaud the committee members for your efforts to date and request you to provide a Federal appropriation of not less than $3 billion for Fiscal Year 1999 for vocational rehabilitation programs. Together we can change what it means to be an American with a disability and enable this population to respond with dignity to the central question, ''What do you do for a living?'' We could make vocation rehabilitation at least a $3 billion response to a $200 billion problem.
Thank you, Mr. Chairman.
Mr. PORTER. Thank you very much, Mr. Young. We very much appreciate you coming and giving us your testimony. It is a very important subject for us to work on together. Thank you for your appearance.
[The prepared statement of Charles Young 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."
Thursday, January 29, 1998.
WITNESS
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JULIE SELLERS, ASSOCIATION FOR PROFESSIONALS IN INFECTION CONTROL AND EPIDEMIOLOGY, INC.
Mr. PORTER. Julie Sellers, registered nurse and Infection Control Coordinator for the Louisiana Health System representing the Association for Professionals in Infection Control and Epidemiology, Incorporated.
Ms. SELLERS. Very good.
Mr. PORTER. Ms. Sellers. Yes, very good, I got through that. [Laughter.]
Ms. SELLERS. I'm here today to talk about some savings. I am here representing APIC which is the Association for Professionals in Infection Control and Epidemiology.
APIC is a non-profit organization representing nearly 12,000 individual infection control professionals who work in a variety of health care settings. APIC has long been a strong proponent of scientifically-based programs and policy designed to protect public health such as those of the Centers for Disease Control and Prevention.
We are extremely concerned, however, about regulation that is not science-based, is unnecessary and is costly to implement. Specifically, I'm speaking today in reference to OSHA's proposed rule to prevent tuberculosis exposure to health care workers.
OSHA issued its proposed rule in October. Since that time, APIC has been working with a broad-based coalition of health care providers to assess the true impact of this proposal. It is clear that this role will adversely impact facilities such as hospitals, nursing homes, clinics, and homeless shelters. It will be virtually ineffective in reducing health care worker exposure to TB.
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OSHA's proposal has also incited the concern of the Small Business Administration's Office of Advocacy whose officials have significant concerns about the economic and technological infeasibility of this proposal.
We health care providers in this country need Congressional support in opposing this rule. Chairman Porter, you and Congressman Wicker have graciously offered your support and have written to Secretary Herman directly to urge a halt to the rule's promulgation. OSHA's rationale for issuing a rule on preventing TB exposure to health care workers is fundamentally flawed. The entire proposal is based on the false premise that workers caring for known or suspected TB patients need additional protections above and beyond those already in place.
The real risk to health care workers is not in caring for identified TB patients. In these cases, the facilities would have already taken the proper precautions to guard against worker exposure as recommended by the CDC. The real risk is in caring for the patient who has TB but has not yet been diagnosed. In fact, if one looks at the factors contributing to employee exposure to TB, more than 75 percent of the time the source is an undiagnosed patient.
It can sometimes take days or even weeks to accurately diagnose a patient as having TB particularly if he or she is initially hospitalized for a different reason or has vague systems. During the time that elapses between admission and diagnosis, many health care workers may unwittingly be exposed to these patients. And unfortunately, these transmissions from undiagnosed patients are not readily preventable.
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Indeed, OSHA admits in its own proposal that the undiagnosed TB cases are the primary factor in the transmission of TB to health care workers. Yet OSHA persists in proposing that those protections will eliminate the risk. The protections cannot possibly have an impact since they would never be put into place in situations where TB is not even suspected.
A blatant example of OSHA's inappropriate intervention is that in its suggestion for health care providers to combine task, limit the number of employees entering a TB-isolation room, and limit the time that they spend with their patient. Limiting access to care poses an ethical dilemma to health care facilities whose mission is to care for patients.
This particular proposal also begs the question, ''If OSHA believes that its proposed protections are effective in safeguarding against TB exposure, why, then would there be any need to minimize the time spent in the room with the patient?''
OSHA's formulation of this rule is in response to a resurgence of TB in the United States that began in 1989 but has been under control since 1992. In fact, the incidence of TB has now dropped to the lowest national level ever recorded.
The CDC issued revised guidelines for the prevention and control of 1994. These guidelines have been implemented as appropriate in a majority of United States' hospitals today. Their widespread acceptance is due to the fact that they are effective, scientifically sound, and flexible for application according to levels of risk.
In conclusion, APIC firmly believes that the CDC is far more knowledgeable than OSHA to handle TB prevention and control for both health care workers and consumers. The changing nature of infectious diseases makes it imperative that any guidelines be flexible and continuously updated. The current CDC guidelines provide us with this flexibility. A static OSHA regulatory standard would not. There is no need to waste taxpayer dollars on a completely separate, OSHA regulatory structure to address TB.
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We urge you to challenge OSHA's rationale behind this unnecessary regulation. This role will only place additional burdens on providers already facing decreasing governmental reimbursements and increasing demands of managed care while providing no added protection for health care workers.
Facilities are currently regulated by a number of entities that provide sufficient oversight for protecting both patient and employee health.
We would recommend that there be better cooperation among agencies currently involved rather than the promulgation of new and overlapping regulations.
We thank you for your continued support on this issue, and I would be happy to answer any questions.
Mr. PORTER. That was absolutely perfect.
Ms. SELLERS. Thank you. [Laughter.]
Mr. PORTER. This regulation is proposed? It has not been issued?
Ms. SELLERS. It is only a draft. That is correct.
Mr. PORTER. I know Mr. Wicker has been very concerned about that. We will work with him to address your concern and his.
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I have a question. You are missing something. Where is your Louisiana accent?
Ms. SELLERS. I work hard not to bring it up here.
Mr. PORTER. You know, you are the second witness from Louisiana with no accent. Where is it? You have one at home and a different one here?
Ms. SELLERS. Sometimes.
Mr. PORTER. I see.
Well, we thank you very much for your testimony. We obviously agree, and we will work with Mr. Wicker and do our best to address that need through OSHA.
Ms. SELLERS. We would appreciate it. Thank you.
Mr. PORTER. Thank you.
[The prepared statement of Julie Sellers follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
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WITNESS
AUDREY HORNE, AUTISM SOCIETY OF AMERICA
Mr. PORTER. Audrey Horne, President of the Autism Society of America testifying on behalf of the society. Ms. Horne.
Ms. HORNE. Good afternoon, and thank you, Mr. Chairman. I come from South Carolina, and I don't bother to try to disguise it.
Mr. PORTER. I guess not. [Laughter.]
Ms. HORNE. There is no need to, and I work real hard to never lose it even after I've spent seven years working on Capitol Hill and associating with folks from all over the country.
I do appreciate the opportunity to come before you on behalf of the Autism Society of America, and it is my pleasure to enter our testimony into these important deliberations.
You just said, my name is Audrey Horne. I am the President of the Autism Society of America which represents a membership of 24,000 fellow advocates.
I am the mother of a young son, who is an adult now, who has autism. He, in his unique needs, and those of my family, are the primary reasons for my decision to serve as a volunteer in the autism community. My husband and I, almost 30 years ago, had our lives come to a very abrupt and dramatic change from the birth of this child, our second. Our lives have been overshadowed ever since by that. But we have willingly accepted the challenge because we love him unconditionally as does his older sister and younger brother. We've been blessed by our own commitment and that help of others along the way. Remember now, if you will, that our son was born before you knew too much about autism and there was no mandatory education for the handicapped.
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I want to thank you, Mr. Chairman, and for the others who serve on this important subcommittee, for the generous support that you have given to the needs of persons with autism in both the research and service arenas.
As you probably do know, autism is a serious, lifelong, neurological disorder affecting approximately one in seven hundred children. The annual cost of cure—or care, we're hoping to get to cure—for those with autism in this country has been estimated at over $13 billion. The vast majority of citizens with autism, even those with exceptional skills, need some type of support throughout their lifespans. Without effective training and support they would become more and more dependent on what was once referred to as welfare programs. Although there are promises in behavior and medical treatments to improve the quality of life for persons who have autism, at this time, we have to say that there is no known biological marker or cure for autism. That is, yet.
I'm asking, please, that you help us. Help us to help families who are physically, emotionally, and monetarily exhausted. Believe me, I know, because my husband and I are in the retirement part of our lives and a lot of other things would have made this a lot easier had we not had to expend so much on care. We did it without grudge, but it does affect your life.
And on behalf, too, of the hundreds of thousands of individuals who themselves have autism but who with the appropriate resources would be able to achieve more fulfilling, independent lives.
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The ASA—the Autism Society of America—asks you please to approve significantly funding levels for the National Institutes of Health and to encourage them to utilize that increased funding for increased research not only into the biology of autism but to into research on treatments and services for individuals with autism.
Chairman Porter, I'm at the stage of my life, and so are many other parents, that we can't wait around for the cure. We've got to do something for those who are with us now.
In the past year, the National Institute of Childcare and Human Development and the National Institute on Deafness and other Communications Disorders have launched the largest, most far-reaching research project in autism history. As a result, ten collaborative programs on excellence in autism exist throughout this country of ours. And they are studying the causes of autism, brain structure, and function and how persons with autism change as they age. Greatly increased funding for all of the institutes for research that looks for causes for autism, how it develops, what is needed to treat the disorder, and ultimately, we do hope it can be prevented and be cured. It is just desperately needed, sir.
This is an exciting time for parents of those who are impeded by this devastating disorder. At long last, we do have collaboration by research entities and sufficient funding appears to be at hand. Research findings suggest that there is—that the period of plasticity—when experience and intervention can change the brain—is much longer than was previously thought. And that certainly is encouraging to us. With valid treatments, we'll be able, we believe—and I believe this—and this would be reinforced by science—to improve what was once felt just to be irreversible damage. The NIH has mounted a campaign to understand the neuro-biology and genetics of autism.
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Please continue your support of them and their efforts. They may be able to put the same energy and funding and to evaluate and improve treatments for citizens who already have autism. Help the NIH with this increased funding so that we may be able to work with them with full up coffers just as strong as the medical ones and they may have the means to use the same level of creativity and be able to do a top-notch job in the biology of autism.
There is a great deal that we don't know about autism. However, in the past, it has been the parents who knew more about it than anybody else because we live with it. Now, increasingly more and more the scientists and educators are learning a great deal more and can help us. There is a great deal that we don't know.
But the greater tragedy is that this country's children and adults who do have autism are not getting the best of what we already have. That should not be allowed to persist. You personally, Chairman Porter, and the people who work with you having previously shown your support for children—particularly those with special needs—your recent reauthorization of IDEA last session without any crippling amendments that would have eroded our children's rights was tangible evidence that dedication and wisdom. Thank you very much for your resistance for any efforts to undermine that. Aside from right now being the right thing to do, it is the smart thing. It is cost-effective in the long run.
Your continued support for the needs of our families will go a long way in abating our growing fears.
Parents age, and usually we know that parents die before their children do. Normally that is a part of the natural order of life. But one of the greatest fears that parents of adult have is dying and leaving and there being no one to do for our children. We are not asking for any benevolent government, of course, to come in and do parent for us, but we do ask if you will please become partners with us in alleviating some of this pain and anxiety and help us to make improvements and to make cost-effective ones.
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Our fervent prayer in the Autism Society of America is that none shall be left unserved or underserved, as we continue our advocacy.
I do most respectfully thank you for your time, your patience, and your understanding, and Chairman Porter, your compassion. Please be assured that the Autism Society of America spends as much as we possibly can within our limited resources to promote public awareness about our autism and to disseminate information that is accurate and up to date.
Thank you so much. It was worth the trip from South Carolina to come before this subcommittee and before a chairman whose activities I follow closely and admire so very much.
Mr. PORTER. Well, Ms. Horne, you're very kind. This subcommittee really has been encouraging NIH to put autism at a much higher priority, and we are as glad as you are that they have chosen to do that in their new initiative.
Could I ask one question?
Ms. HORNE. Surely. If I can answer it, I'll be glad to.
Mr. PORTER. Well, tell me the circumstances of your son now.
Ms. HORNE Thankfully——
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Mr. PORTER. He's 30 years old, did you say?
Ms. HORNE. Yes, he'll be 30 next summer. We didn't have intervention as soon as we would have liked to have, but because of our own planning and the cooperation, I will say, the legislature and executive branches in South Carolina government to address this need, to make a long story short, he resides in Charleston, South Carolina now in a house with two other young men who have autism with staff around the clock. He works in the community. He is a wage-earner, and he's at just about the level now to start paying taxes. I know you'll be glad to hear that, and we all are, because we want him to have self-respect.
He's still got a long way to go. His communication disorders are still there, but he's enjoying a level of support and of living that has dignity in it, and does give his father and I more assurances as we age. We know that his brother and his sister will be his advocates, but they have families. Needless to say, we are grandparents also, as well as parents, and people have been so responsive. And that's one reason that I chose to serve in the first place, was, it may sound corny, Chairman Porter, but my husband and I decided that we wanted to take as many people along with us as we could, not to get it all just ourselves.
Mr. PORTER. Well, we're delighted that you are taking that leadership role and that you've come all the way from South Carolina to testify before the subcommittee, and you brought your accent with you.
Ms. HORNE. Yes, sir, and I plan to take it home tonight. [Laughter.]
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Thank you.
Mr. PORTER. I'm going to come down in a couple of weeks, and we have a conference I'm attending in Charleston.
Ms. HORNE. Oh, well, I live quite near Charleston there. Where was your conference going to be, if I might ask?
Mr. PORTER. I can't tell you the name of the—it's probably the nicest place, though, right in the historic area——
Ms. HORNE. That's good.
Mr. PORTER [continuing]. They said five or six blocks from the Battery or from the water at least.
Ms. HORNE. We are having a quarterly board meeting. I'm flying back tonight, and Dr. Zaro, who came with me, is our executive director—so that I invited them to come to Charleston because I said they needed to be—everybody needs some time to go where the birth of civility was. [Laughter.]
That sounds chauvinistic, I know, but I am proud of our State, and we will be——
Mr. PORTER. I can hardly tell.
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Ms. HORNE. Yes, you can hardly tell. We're meeting at the Mills House Hotel in the historic district.
Good luck, and I know that you've probably been to South Carolina before, but——
Mr. PORTER. Yes, I have.
Ms. HORNE [continuing]. I know that you will be most welcome there.
Mr. PORTER. Well, thank you very much.
Ms. HORNE. Thank you.
[The prepared statement of Audrey Horne follows:]
"The Official Committee record contains additional material here."
Thursday, January 29, 1998.
WITNESS
ROBERT STILLMAN, AMERICAN SOCIETY FOR REPRODUCTIVE MEDICINE
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Mr. PORTER. Robert Stillman, M.D., director, American Society for Reproductive Medicine, testifying in behalf of the Society. Dr. Stillman. You are last but not least.
Dr. STILLMAN. I appreciate it.
Mr. PORTER. I'm sorry to keep you so long.
Dr. STILLMAN. No, I apologize for keeping you so long, but that is a very tough act to follow, but I'll see if I can keep my Illinois accent under abeyance.
Mr. PORTER. Illinois accents do very well here as well. [Laughter.]
Dr. STILLMAN. I understand.
I'm medical director of the Shady Grove Fertility Centers here in Washington—I have come a very short way actually—and clinical professor of obstetrics and gynecology at Georgetown. I have the honor of serving on the board of directors of the American Society for Reproductive Medicine, the ASRM, whom I am representing here today.
ASRM is the Nation's leading professional organization for reproductive medicine. More than 9,000 members are its leading practitioners and investigators in the field. We're grateful for the opportunity, albeit late, keeping you all here today, to appear before you and offer our views on the 1999 appropriations.
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We have an interest in the number of the agencies before this committee in your purview, but I'll confine my comments here today to two: the National Institutes of Health and Centers for Disease Control and Prevention.
When discussing NIH, I must first begin by thanking the members of the committee and you for the strong bipartisan support for medical research over the last years, as you've heard all day today, with which we concur. Many of the Members of the Congress are calling for a doubling of the NIH budget, and we strongly concur with that and applaud the Members and the President for the stand in that.
As a beginning point to the doubling of the budget, we, too, as the other speakers here today, have recommended increasing the NIH budget for 15 percent for 1999. We are joined in this also by more than 200 members of the Ad Hoc Group of Medical Research Funding, a broad-based coalition of patient advocacy groups and professional organizations.
Specifically, most of the research in reproductive medicine, however, is funded through the NICHD, the National Institutes of Child Health and Human Development, and we also recommend that NICHD's appropriation be increased 15 percent for Fiscal Year 1999. Time will not allow me to discuss many of the fine programs, unless we'd like to stay much longer, but I do want to draw your attention to just two.
One is the contraceptive and infertility research centers. These centers have not received full authorized funding level, and we strongly encourage you to do that funding.
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The second is a new one, and thanks to your leadership, NICHD is starting this year the women's reproductive health research career development programs. The program will allot $3 million from NICHD to top academic departments around the country to facilitate training and career development for young investigators in women's reproductive health issues. The program will both enhance reproductive research now and invest in tomorrow's investigators at a critical and vulnerable time in their careers, and at a time when many, many promising young lives are leaving academics and research due to the lack of funding.
Regarding the Centers for Disease Control and Prevention, in December, CDC, in conjunction with ASRM, in conjunction also with one of our affiliate societies, the Society for Assisted Reproductive Technology, SART, and RESOLVE, the national patient advocacy and fertility group, published the 1995 Assisted Reproductive Technology Success Rates Report. This publishing partnership was developed under the terms of the 1992 Fertility Clinic Success Rate and Certification Act, sponsored particularly by Representative Wyden. The report was, unfortunately, delayed from 1992 because of the lack of funding of the law, and finally it was enacted and supported, and the publication just came out. So thanks to that congressional leadership, consumers now have access to outcome data unlike that available in any other field of medicine.
By working together, government, patients, and providers have made it easier than ever for patients to be well-informed medical consumers. CDC has done an excellent job in implementing the law. However, Congress did not make available additional funds for its implementation. This lack of funds has also caused the delay of implementation in the second part of the same act, the certification component, which is meant to develop standards for embryology laboratories, a very important issue.
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In order to ensure that CDC can fully implement the terms of the law, ASRM recommends $7 million be specifically allocated by Congress to CDC for that purpose. Please invest in the future health of this country with the adequate funding of NIH and CDC programs, as you've supported to date.
I appreciate the opportunity to be here. We'd welcome any questions.
Mr. PORTER. Dr. Stillman, let me see if I can understand this part about CDC and the implementation of the law. Say again why—I thought you said that we had not provided funding to implement the law.
Dr. STILLMAN. There was a long period of time when there was basically an unfunded mandate. There was the law, but not funding for it, and that was the difference between 1992 and 1995. Currently, as I understand it, there is no funding for continuation of CDC's support for them to implement the law. So CDC is required to implement the provisions of the law, but doesn't have the funding for it or adequate funding for it, in particular, regarding embryology laboratories.
Mr. PORTER. Let me look into this further and see why that is so. I was not aware. We have attempted to provide funding for whatever CDC asks for. Obviously, there's no line item for it——
Dr. STILLMAN. Right.
Mr. PORTER [continuing]. But we have provided them substantial increases in recent years, and there should be funds for them to carry out that mandate. But let me check it.
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Dr. STILLMAN. I appreciate it.
Mr. PORTER. One other thing I'd like to say, and that is that the President's proposal is to increase to double-funding for research over 10 years and not 5. And we expect the President's budget to show about an 8 percent, 8.2 percent increase for NIH, which would reflect that doubling over 10 years. While this is very good news, because the President's budgets in the past have not been nearly that strong, it is not the same as the proposal of the Ad Hoc Committee, which is to double it over five years. So while I'm encouraged, I think it's fair to say we're going to have to work very hard and work with the Budget Committee to see if we can get the resources we need to raise that entire funding level higher, and that means we're going to have to impact the American people with the importance of this, in order to get that message back to Congress.
So thank you very much for coming in to testify. I again apologize for keeping you so late. We appreciate your informing us. I will look into this matter, particular matter, because I'm not aware of why that isn't being accomplished.
Dr. STILLMAN. Let me know if I can help.
Mr. PORTER. Thank you.
Dr. STILLMAN. Thank you.
[The prepared statement of Robert Stillman, 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."
Mr. PORTER. The subcommittee will stand in recess until 10:00 a.m. next Tuesday.
Tuesday, February 3, 1998.
WITNESS
ARTHUR J. AMMANN, M.D., AMERICAN FOUNDATION FOR AIDS RESEARCH
Mr. PORTER. The subcommittee will come to order.
This is the fifth of nine sessions of two hours each with public witnesses that the subcommittee will conduct that puts us somewhere near 200 public witnesses. We're trying to accommodate as many as possible. We realize that not all can be accommodated. We have done our best to give everyone a chance to testify who's interested in doing so.
Because we have so many witnesses and so short a time, we have to be very insistent on the five minute limit. Up to this point, I have to say, the witnesses have been very good about that, and many obviously time their testimony so that it comes out right about the exact time.
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The staff has gotten even tougher, because they now have a timing device. And if you hear the ringing of the little bell, you'll know that that's the five minutes. Carol Murphy is in charge of that this morning.
We welcome your testimony. The reason we have it early is that there are fewer chances for interruptions by votes on the floor. This year the President got his budget out in time so that you actually can if you want to comment on the numbers that you see the President has presented.
So we thank each one of you for coming this morning. We'll listen very intently to what you have to say.
Mr. PORTER. We will begin our hearing this morning with Arthur J. Ammann, M.D., President of the American Foundation for AIDS Research, testifying in behalf of the Foundation. Dr. Ammann, why don't you take the center seat there, if you will, and proceed.
Dr. AMMANN. Chairman Porter and members of the committee, thank you for inviting me to appear before you. I'm Dr. Ammann, President of the American Foundation of AIDS Research. My experience includes that of being a pediatrician. I worked at the University of California. I also worked for a biotechnology company called GENINTEX, and now I'm working with foundations.
In all those areas, I have seen the broad benefits of NIH-sponsored research. It has really been dramatic. Last year as I appeared before this committee on behalf of the HIV/AIDS community, we asked for an across the board increase in NIH funding. Your committee and Congress responded, for which we are thankful.
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I think we are now witnessing one of the most dramatic increases in discovery in biomedical history. Today I urge you and your committee to keep this momentum going. AmFAR joins other advocates in biomedical research in asking for a 15 percent across the board increase for NIH.
I just returned from Chicago, Illinois. Going on right now is an HIV/AIDS committee in which I'm seeing the dramatic impact of NIH-supported research. We're really changing the face of this disease.
Many HIV infected individuals are living longer. They have now healthy and productive lives. In most cases we can prevent the accidental transmission of HIV. Very dramatically, we are at the point of eradicating HIV infection in newborn infants as it's transmitted from mothers to infants because of NIH-sponsored research.
But the discoveries made in HIV/AIDS are reaching out very broadly. They're touching the lives of thousands of individuals with other diseases as well. Before the HIV/AIDS epidemic, as I dealt with immuno-deficient patients, we had very few treatments available for opportunistic infections. Because of patients with HIV/AIDS and research, we now have multiple treatments that people can choose from to treat these very devastating diseases. These are people with cancer, kidney transplant, genetic disorders as well.
We also believe that HIV/AIDS has benefitted from the research done in other areas, cancer and neurology. For that reason, we feel there should not be a disease versus disease debate in terms of funding. Rather, the scientific community, armed with a strong NIH, adequate resources, the leadership of Dr. William Paul, that he has given to the OAR, we need another director, that needs to continue, and we're grateful for Dr. Harold Varmus, who has really shown strong leadership for the National Institutes of Health.
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The question is, if we have been so successful in HIV/AIDS, do we need more support for HIV/AIDS. I would say emphatically, yes, we do. We have problems with AIDS. We've changed the mortality related to AIDS. We have fewer people with AIDS for the first time, but we have more HIV infected people. We have not cured a single patient with HIV infection.
So we have concerns that mean we have to do more research. We need better therapy, we need safer therapy, and less toxic therapy. We have to deal with the inevitable emergence of resistant virus. We need better therapy for opportunistic infection. We need therapy that's simpler, because we are seeing a discrepancy in the benefit from the research in disadvantaged populations.
I think we also need to recognize that we have to implement every ethical safe and effective measure that has been scientifically proven to work, such as needle exchange. Critically, we need a safe and protective vaccine so that every man, woman and child can be protected from this devastating infection.
Finally, we need to recognize that while we have a partially controlled disease in the United States and reduction of transmission, we are looking at an international epidemic that involves 16,000 new infections, including 1,500 in children, each year. For moral, biologic and even selfish reasons, we need in this country to perform research that will address these very critical issues. Because these issues will also eventually affect us as well.
I would like to thank you for your support in the past, and urge you to continue to support a strong NIH, to continue to support HIV/AIDS research. Because without it, HIV/AIDS will become the number one health concern of all nations, including ours. I have submitted detailed written testimony and an appendix which talks about the broad benefits of AIDS research.
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Chairman Porter, members of the committee, thank you for this time.
[The prepared statement of Arthur J. Ammann, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Ammann, thank you for your testimony. I think I can assure you that the subcommittee will continue to place HIV/AIDS at a very high priority. We were happy to see that the President's budget gave it that priority in his judgment.
Because you're our first witness and have mentioned the 15 percent increase that others have mentioned, you get subjected to my sermonette that I have subjected all of our witness groups to. And that is that we have to realize that first, the budget is not in balance yet. The President has submitted a budget that is in balance, in fact shows a small surplus.
But as part of that, he includes about $100 billion of new revenues. I think it's fair to say, and Mr. Hoyer may wish to correct me if he sees it differently, that those revenues are in this year at least highly problematical, and that a lot of the funding increases that the President suggests in discretionary programs are dependent upon revenues that may not, in my judgment, probably will not, materialize in the budget process.
So that means that if you're really interested in the 15 percent increase, the budget committee is where the action is going to lie, at least in the first instance. I would urge persons that are concerned, not only with biomedical research, but with all the programs before the subcommittee, that we can't do very well if we don't have the kind of allocation from a budget that reflects it that will give us the resources we need to make these kinds of judgments.
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So that's my sermonette for today. We've got to aim ourselves at the budget process in the first instance and work for a good, strong allocation that will allow us to do the things that we'd like to do.
Do you want to take issue with that, Mr. Hoyer?
Mr. HOYER. Well, Mr. Chairman, I think clearly some of the spending included in the President's budget is contingent upon revenues being generated. That is not a sure thing. The Chairman's right on that. Therefore, it will not be sufficient to simply focus on this committee's appropriation of funds, but also to focus on both the budget committee and other committees, authorizing committee, which may impact on that revenue stream. The Chairman's correct on that.
I think what the President has done properly is to project revenues that might possibly occur and set forth a plan to invest those resources in the event that the resources occur. Frankly, from my perspective on the tobacco settlement in particular, that is added reasons for the Congress to act on this matter. I'm hopeful that they will.
But I think the Chairman's correct, that the money's not in hand at this point in time. I would comment, however, that I am very pleased that the President, for the first time in 30 years has projected a balance in light of the projections he has made. That has never occurred, whether the revenues were problematic or not.
This is the first budget that has suggested that it was going to be in balance. And I think, the President is rightfully very proud of that. We on our side are proud of that. I think the Republicans can be proud of it as well, to the extent that the ability to do that was in some respects a joint effort. I think the Congress will want to stick with that, and in fact, reach the balance. But that will put added pressure on making sure that the revenues do, are realized.
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Thank you, Mr. Chairman.
Mr. PORTER. Thank you, Mr. Hoyer. My sermonette number two is let's keep this strong economy going, because it's creating the revenue stream that allows us to do all of these things.
Thank you, Dr. Ammann, for your testimony.
Mr. HOYER. He didn't add as a result of the 1993 economic program at present, but I'm sure he meant that.
Mr. PORTER. No, I didn't, and I didn't on purpose. It resulted from a private sector which reorganized itself in ways to be competitive over a long period of time, and we've achieved that.
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Tuesday, February 3, 1998.
WITNESS
ROBERT M. TOBIAS, THE NATIONAL TREASURY EMPLOYEES UNION
Mr. PORTER. Robert M. Tobias, National President, the National Treasury Employees Union, testifying in behalf of the Union. I recognize Mr. Hoyer.
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Mr. HOYER. Mr. Chairman, I'm pleased to have the opportunity to say just a word about Bob Tobias. Bob Tobias is, as you know, a President of the National Treasury Employees Union, and in my opinion, one of the most articulate, able, forceful and visionary leaders that we have representing working people in this country.
He happens to represent Federal employees who are a part of that large working group that keeps this country going. I'm pleased to welcome him to our committee. He's a lawyer, an outstanding background as a Federal employee and now as a leader, frankly, in the reform effort at the Internal Revenue Service, many of whose employees are members of his union.
He was on the commission that recommended reform, and he has been working, I know, very closely with the new director, Mr. Rosatti, who told me the other day that I was absolutely correct in my judgment that we ought to spend a lot of time with Bob Tobias in working towards reforming the IRS, making it work better, more user friendly and more effective and efficient a service to the American public. So I'm pleased to welcome Bob to our committee.
Mr. TOBIAS. Thank you, Congressman Hoyer, and Mr. Chairman. I am very pleased to be here to speak on behalf of the employees of Health and Human Services.
Mr. Chairman, Congress spends a great deal of energy and effort creating policy and then designing programs, but very little time thinking about whether or not the program, the policy that's been created and the programs that have been designed are actually implemented in a way that impacts on the public in the way the policy was created and the program was designed.
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It seems to me that as the board of directors of the Executive Branch, which is how I see the relationship as it impacts on the employees of the Executive Branch, I ask that you spend some time thinking about the problems of program implementation. Now, those who are responsible for program implementation, the Federal employees in HHS, have a very low morale.
And for good reason. There are 300,000 fewer employees, but no reduction in mission. There are new roles, new responsibilities, but no increase in training budgets, so that people can acquire new skills in order to deliver a changed work process to the public. The continued threats of reductions in force create fear in the work place.
And morale makes a difference in the quality of the products delivered. There's a great deal of data in the private sector, and we're developing similar data in the Federal sector, that when employees say they are satisfied on the job, when their job satisfaction is high, they also deliver better service to the public.
So there's a direct link between the training funds you provide, the technology you make available, and the stability that you provide in the work place to the service that the public receives.
Now, these are issues, I believe, too long ignored. Many in Congress have merely assumed that eliminating 300,000 positions will have no impact on the service delivered, that this effort has merely eliminated the so-called deadwood.
I can assure you that the reduction in agency budgets, in particular, in the training provided, has made service delivery much more difficult. Federal employees want to do a good job. I ask that you not only consider policy and programs, but also program implementation. That in your role, you ensure that employees receive the training they need and the technology they need in order to deliver the programs that you work so hard and debate so long to create.
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Thank you, Mr. Chairman.
[The prepared statement of Robert Tobias follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Tobias, I think you make very good points. Obviously, part of the reduction in work force should relate to the turning over of the detail, at least, of policy to the states and local governments. We have done a great deal more of that, and we should need fewer people at the Federal level to carry out policies that rely much more upon other levels of government.
But I think you're absolutely right about providing for the morale of Federal employees and funds for training them. I might add to that also, to pay them fairly. I think we attempt to do the best job we can within the limits of our resources to do that. But obviously, we're going to take a look at that and try to do better.
Mr. TOBIAS. Thank you.
Mr. PORTER. Mr. Hoyer.
Mr. HOYER. I just want to make a brief comment on that. I think you're correct, obviously, where we have shifted responsibilities. In fact, of course, the way we reduced the Federal employee complement of personnel was not to look at mission and work load, it was to simply look at numbers and dollars.
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As you recall, what we did was, we ultimately came to the 273,000, which we have now exceeded by almost 60,000, where we have the lowest work force we've had since the Kennedy Administration. What we did was, we determined a good objective, that was fighting crime in America, which has been very successful. We then set up a trust fund, as you recall, to fund that heightened crime fight.
And that trust fund was established from the reduction in Federal employees, so that the necessity for the money and the objective of simply reducing the work force drove us more than making a comparison between work loads and complement necessary to accomplish those work loads. I think that's an excellent point that Mr. Tobias is making.
Obviously you are correct, when we shift, when we either downsize workload then we can reduce personnel. Or when we shift work to either the private sector or to the states and municipalities, we can downsize Federal personnel. Unfortunately, we went at it backwards, and we need to make sure that there is a relationship between work load and numbers of personnel available to accomplish the work load objectives that the Congress and the President set.
Mr. TOBIAS. Mr. Chairman, you mentioned that the private sector had done a great deal of reorganizing over the past 10 years. I think that what Congressman Hoyer is saying is right on the mark, very few companies have downsized by establishing a goal of downsizing without first identifying what their mission is, what the appropriate structure ought to be to support that mission, re-engineering the effort to produce the service as the Federal Government has done.
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So what we find is, some agencies have done that work, many have not. So we have no reduction in mission, no re-engineering. We still have the same responsibility to be delivered with untrained employees without the technology they need. That obviously creates a work place with low morale and low service delivery.
Mr. PORTER. I'd love to continue the discussion, but Mr. Tobias, we thank you for your testimony. I think you have pointed out matters that should concern this subcommittee and do.
Mr. TOBIAS. Thank you very much.
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Tuesday, February 3, 1998.
WITNESS
VICKI MODELL, THE JEFFREY MODELL FOUNDATION
Mr. PORTER. Our next witness is Vicki Modell, the Vice President of the Jeffrey Modell Foundation, testifying in behalf of the Foundation.
Ms. Modell, it's nice to see you again. We are great fans of your commitment.
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Ms. MODELL. Thank you very much, and good morning, Mr. Chairman and members of this committee.
I'm honored to have the opportunity to testify before you again this year to talk about success. Success that this committee helped to create. But I'll also talk about some things that remain to be done.
When I testified the first time in 1996, the Jeffrey Modell Foundation was a small, grass roots foundation, representing more than 500,000 Americans, mostly children, and a like number of undiagnosed with something called primary or genetic immune deficiency.
Previously, these families had no voice, no visibility in the media, little research at the NIH and most tragically, very little reason to hope. These children were chronically and oftentimes fatally ill. Their prospects for effective treatment were dim and a cure was remote.
I understood their pain and suffering. I understood it too well, for we had faced the same pain with our son Jeffrey, who unfortunately and tragically was taken from us at the age of 15.
But soon after our loss, my husband and I came before this committee with an idea and a plan, a simple, yet comprehensive plan to help these children as quickly and as efficiently as we could through a partnership with the National Institutes of Health. We asked for a hand, not a handout. And offered to fund our share every step along the way with the NIH. We sought your encouragement and support in programs of public awareness, physician education and research. You said yes, and together, hand in hand, we went forward.
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Today, I'm here to report back to you that the plan has worked. I can point out with pride that this kind of partnership has now become a shining model for a new form of public-private partnership throughout the campus of the NIH. In the area of public awareness, we created an illustrated ten warning signs poster in English and Spanish that has been distributed to pediatricians and primary care physicians nationwide.
Former Surgeon General, Dr. C. Everett Koop, and NIAID Director, Dr. Anthony Fauci, joined with us in producing an informative video which will target medical schools, school nurses, physician conference and community outreach.
We worked with three NIH institutes and the American Red Cross to produce our seventh symposium for primary care physicians. This one dealt with approaches for diagnosis and treatment using an interactive satellite hookup that was beamed to physicians in 32 cities and 21 States, including the annual meeting of the American Academy of Pediatrics in New Orleans.
At the Genome Institute, where we have funded post-doctoral fellows, the genes that cause more than one-third of these diseases have been identified. That's exciting. We're co-funding with NIAID and NICHD outstanding research projects that would otherwise have gone unfunded, and they are at the University of Washington in Seattle, Children's Hospital in Los Angeles, the University of Florida in Gainesville, and Duke.
To build on the biomedical research, we have redoubled our efforts in clinical research. We now support major research centers at the Mount Sinai Medical Center in New York City, at Boston Children's Hospital and at the Harvard Medical School. It's important to remember that the most effective gene therapy treatments so far have been conducted on our immuno-deficient patients.
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We see the results of the clinical research every day. We learn of more and more patients who are diagnosed early and correctly, treated appropriately and are able to lead more normal and productive lives. And isn't that what it's all about?
We've done our part by co-funding with the NIH every step of the way. For all the money we can raise and all the heart that we can pour into this effort, it is becoming increasingly difficult for grass roots organizations like ours to keep up the pace.
I pledge to you that we will continue to do our share. For as you know, we are working in our son's memory, and we will not, nor cannot reset, until this disease is defeated. We need this committee to make clear its strong and unequivocal support and encouragement of what we are doing.
This model of collaboration seems so right. Most importantly, it has worked. I think of it like a kind of circle. It's a circle that connects public awareness to physician education to biomedical research to clinical research, and finally, to clinical application.
In the music from the Lion King, Elton John describes a path unwinding which he calls the circle of life. It's the wheel of fortune, it's a leap of faith, and it's a band of hope. Working together, please let's complete the circle of life and give hope and faith to the half a million children with primary immunodeficiency.
Thank you.
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[The prepared statement of Vicki Modell follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Ms. Modell, I think that you are very much on the cutting edge of what I see to be the future of funding of medical research in our country. Because I think 25 to 30 years from now, I would imagine that half the money going into research will come from private foundations like the one you've established in memory of your son, and will be a very, very important lever to direct research in our country.
So you're there at the opening bell and making a great difference. We very much admire your commitment and your willingness to make a difference in respect to research in this very important area. So thank you for being with us this morning.
Ms. MODEL. We thank you.
Mrs. LOWEY. Mr. Chairman?
Mr. PORTER. Mrs. Lowey.
Mrs. LOWEY. Mr. Chairman, I want to join you in welcoming and thanking you. I truly thank you and admire you, Vicki, and I see your husband Fred here today, for the extraordinary work you're doing. We all hope that our lifetime can yield some important work, some important difference, can affect the lives of others.
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Well, you and Fred have made a powerful difference. I just wanted to express our appreciation. I know that this committee will continue to work in partnership with you so that thousands and thousands of children will have a better life. We thank you very much and thank you, Fred. And we thank all the members of your foundation.
Ms. MODELL. Thank you very much. Your words this morning really have made it all worthwhile, and I won't stop now. And I thank you.
Tuesday, February 3, 1998.
WITNESS
STEVEN MIRIN, M.D., AMERICAN PSYCHIATRIC ASSOCIATION
Mr. PORTER. Our next witness this morning is Steven Mirin, M.D., Medical Director, American Psychiatric Association, testifying in behalf of the Association.
Dr. Mirin.
Dr. MIRIN. Thank you, Chairman Porter and members of the subcommittee. I am pleased to be here today representing the American Psychiatric Association, which is one of the Nation's oldest medical specialty societies, representing 42,000 psychiatrists and just as importantly, millions of our patients.
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I'm providing this testimony in collaboration with the statement of the ad hoc group for medical research funding which calls for a 15 percent increase in NIH funding for fiscal year 1999, an important benchmark in the effort to double the NIH budget over the next five years. Chairman Porter, I am mindful of your advice at the beginning of this session.
Today, I will present the APA's specific recommendations regarding the fiscal year 1999 appropriations for the National Institute of Mental Health, National Institute on Drug Abuse, National Institute on Alcohol Abuse and Alcoholism and the Center for Mental Health Services within the Substance Abuse and Mental Health Services Administration.
The prevalence and impact of mental illness and addictive disorders is often underestimated. But the magnitude of the problem is significant. Indeed, worldwide, these diseases are among the leading causes of disability. In our own country, when one considers the toll from medical morbidity and mortality, lost productivity, and the costs of treatment and law enforcement, the aggregate burden of severe mental illness now exceeds $300 billion a year.
Thanks to the research advances of the last two decades, we now know that severe mental illness and addictive disorders are not a consequence of inadequate patenting, lack of will, poor self-control or moral failure. They are diseases of the brain whose development is influenced by a host of genetic, biological and psychological factors that are just beginning to be understood.
More importantly, we know that these disorders are eminently treatable, and that the results of treatment are comparable and in some cases better than the treatment for illnesses like heart diseases and cancer. Thus, while the personal and societal costs of mental illness and addictive disorders are high, an investment in research and treatment will help save lives, strengthen families and save taxpayer dollars.
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At the NIMH, basic and clinical research has helped lay the groundwork for the development of a new generation of medications for schizophrenia, depression and other mental disorders. These new medications are more effective, have far fewer side effects, and are benefitting more patients than ever before.
For example, NIMH funded research on the anti-psychotic drug Clozapine has helped thousands of individuals afflicted by schizophrenia to leave hospitals and in many cases to hold a job and live independently for the first time in their lives. Economic estimates suggest that the introduction of Clozapine alone saves our Nation approximately $1.4 billion a year in health care and other costs.
But a lot of work lies before us. APA particularly supports NIMH's commitment to expand research on mental illness in children. An estimated 20 percent of American youth, 11 million people in all, have serious emotional or behavioral disorders. Two-thirds of those are not getting any treatment at all.
The effects of these illnesses on the lives of our children and on their families are enormous. Children with untreated cognitive or emotional disorders cannot learn or benefit from the kind of peer and family relationships essential to becoming a healthy and productive adult. These children are also at increased risk of alcohol and drug abuse, criminal behavior and suicide. We urge continued support for the child health initiatives currently underway at NIMH.
Turning to drug addiction, this is clearly one of the most serious problems our Nation faces. The economic and social costs are staggering.
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In addition, illicit drug use is a major factor in the spread of infectious diseases like AIDS, hepatitis, and now treatment-resistant tuberculosis. Because it is such an important problem, the National Institute on Drug Abuse has developed a broad research portfolio that addresses the most fundamental questions about these disorders, ranging from how drugs work in the brain to how we can reach into families and communities to learn why some people are at increased risk for drug abuse, while others in the same family and in the same neighborhood are immune.
Over the past decade, NIDA-funded research has provided us with a far better understanding of the process of addiction and enabled us to develop increasingly effective treatments for these disorders.
The final NIH priority I will discuss today involves our research efforts on a substance that is legal but kills approximately 110,000 of our citizens each year. Although the use of alcohol is culturally acceptable in our society, we all know the human suffering that alcoholism visits on affected individuals and on their families. Chronic heavy drinking often results in profound medical consequences and alcohol use in pregnant women induces congenital defects, learning disabilities and other disorders.
NIAAA-funded research spans a broad range of important questions in the role of genetic factors in this disorder to promising new treatments like Naltrexone, a medication that helps alcoholics by reducing both their craving for alcohol and the euphoria associated with alcohol intoxication.
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For fiscal year 1999, the APA recommends that the research budgets of NIMH, NIDA and NIAAA be increased to levels commensurate with the quality of science being supported by these institutes, including $970 million for NIMH, $720 million for NIDA, and $283 million for NIAAA. These recommendations are inclusive of funds to be appropriated for AIDS-related research and are based on the expert analysis of the scientific opportunities that can be pursued at each institute to ensure future progress in our understanding and treatment of these disorders.
Finally, as we all know, research advances mean little unless those who are ill receive appropriate treatment. In this context, the Congress has called upon the Center for Mental Health Services to exert vigorous Federal leadership in mental health service delivery and policy development. In some States, SAMHSA-funded treatment services constitute almost 40 percent of community based mental health care.
For fiscal year 1999, the APA recommends a funding level of $635 million for CMHS. Included in this number is $30 million to support a new investment which we believe would support the committee's goal of making community mental health services more accountable and more cost effective. States need to develop the capacity to collect, analyze and report performance data for the services provided to your constituency.
We urge the subcommittee to appropriate this money to help States develop and implement a data gathering system to accomplish this goal, and to incorporate the use of practice guidelines and measures of treatment outcome as an integral part of service delivery. We stand ready to work with CMHS and the States to improve the effectiveness of these programs.
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In conclusion, the APA applauds your leadership in providing support for research and treatment of patients with mental illness and addictive disorders. These are dollars that are well spent. It will help translate the promise of scientific discovery into improved lives for millions of Americans.
I thank the committee for the opportunity to testify today.
[The prepared statement of Steven Mirin, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Mirin, thank you very much for your testimony.
Let me remind witnesses that the attention span of members of the subcommittee is exactly five minutes. You lose us after five, including questions, I might add. We have a long, long day ahead of us, and we would ask witnesses to stay within their time limits.
Tuesday, February 3, 1998.
WITNESS
QUINCY ABBOTT, THE ARC OF THE UNITED STATES
Mr. PORTER. Our next witness is Quincy Abbott, President of The Arc of the United States, representing The Arc, a National Organization on Mental Retardation.
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Mr. ABBOTT. Chairman Porter, members of the committee, The Arc is the National Organization on Mental Retardation, with over 1,000 chapters throughout the country and 140,000 members. I am from Connecticut, and I'm pleased to be its president this year.
Mental retardation is a condition that affects about 7 million of our citizens. A hundred thousand people are born each year with mental retardation. It cuts across racial, educational, social, religious and economic backgrounds. The Federal Government does have a role, and a proud role, in serving our people with mental retardation. From early intervention through special education through vocational rehabilitation, health services, long term services and supports and housing supports, and prevention of future people with mental retardation.
We have a tragic condition in the United States today. There are over 250,000 people throughout the country waiting for services in the community. A copy of our report that details this by State is with my submitted comments.
There are over 50,000 waiting for placements in the community from institutions, nearly 90,000 living at home waiting for residential services. And our data probably under-reports. Many of these families are in desperate, desperate condition. I think back to when my daughter was young. She is now 34, and I'm real proud of what she has accomplished, living in the community.
I'm ashamed of what I had to do to her when she was four and a half and living at home, and there was no family support. She was a hellion on wheels. Somebody had to be with her every minute of the day. The only relief was when you put her, at age four, I guess you could call it a cage and not a playpen.
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Her psychologist and my wife's psychiatrist agreed that we either had to have supports in the home or put her in an institution. At that time, I did not have the money to pay for supports in the home. There was no family support program. At four and a half, she became the youngest person to enter an institution in the State of Connecticut.
During the next few years, she was over-medicated and under-served. I remember in particular her loss of the few words that she knew, like Daddy. Well, family support can provide assistance to families like mine today. The respite services they need, so the mother can go out and do shopping, or the parents can go out to a movie, it provides only what's necessary. It can save a tremendous amount over the option of institutional costs. Institutions average $75,000 a year in our country, and $5,000 or $10,000 can go an awful long way toward helping a family with family support.
The respite, doing household chores, parent training, especially with newborn infants, property repair. There are families that have used their support payments to repair the house once a year from the damage that's been done by their child, but they still want to keep the child at home. And vouchers for special purposes, special equipment, that sort of thing.
Family support has been authorized for a number of years, but it has never been funded. This year, we're happy that the President's budget contains $5 million to start a Federal funding of family support. We are asking this committee to appropriate $10 million to the States to allow all States to participate in this sort of program.
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A very small investment in a family, while the child is young, can reap tremendous benefits down the line. It can enable the child to lead a productive life, as he or she grows up, to become a tax paying citizen and to be off the relief rolls to a large extent.
But the cost savings aren't what's important, it's keeping the family together when the family wants to stay together. That's the important thing.
I thank your committee for its past support, and I hope for your future support.
[The prepared statement of Quincy Abbott follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Abbott, thank you for your testimony.
Can you tell us when the program was originally authorized?
Mr. ABBOTT. It was authorized, I think, four years ago, in 1994.
Mr. PORTER. But there's been no funding?
Mr. ABBOTT. Yes.
Mr. PORTER. Okay. We'll do the best that we can.
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Tuesday, February 3, 1998.
WITNESS
LYNDA JOHNSON ROBB
WILLIAM E. TRUEHEART, READING IS FUNDAMENTAL, INC.
Mr. PORTER. Our next witness is Lynda Johnson Robb, Chairman of the Board, Reading is Fundamental, Inc., accompanied by Dr. William E. Trueheart, President of the Corporation, testifying in its behalf.
Lynda, it's nice to see you again. I want to say that obviously, we count you as one of our celebrities who come to visit our subcommittee. But you're more than that. You're committed to this program, you work on it. You personally put your time and effort into it, not just to come to testify, but to be there and be a part of it. We very much admire that commitment, and thank you for being with us.
Dr. Trueheart, welcome.
Mr. PORTER. Mr. Hoyer.
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Mr. HOYER. I'd like to say a word of welcome. Obviously, I've known Lynda for a very long time. She was a mere child when I first met her.
But I made this comment, as you have made this comment in the past. There are some people who are celebrities in many ways. Lynda of course is from a family who has given extraordinarily of themselves, her father, of course a great leader in making sure that we did not forget people who were in need in America. He himself had experienced a life, an early life not of wealth, and knew that there were struggles out there. He reached out to people.
The war on poverty has been scoffed at some, I think, frankly it was more that we gave up in some respects than we were defeated by poverty. It was a statement, however, that the richest Nation on the face of the earth knew it had a moral and intellectual responsibility to make sure that every American was given the opportunity that is America's promise.
Lynda and her husband have pursued that life of service and of commitment. Lynda, I want to congratulate you. There is never a year that goes by that I don't, Doctor, have a long conversation with Lynda, so I know exactly what I'm supposed to do, when I'm supposed to do it and who I'm supposed to talk to. Lynda is a very able advocate, Dr. Trueheart, as I'm sure you know. You will find her a great partner in this effort.
Thank you, Mr. Chairman.
Mr. PORTER. Thank you, Mr. Hoyer.
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Ms. ROBB. Thank you, Mr. Chairman, for your kind words. I have been a volunteer for over 30 years for Reading is Fundamental.
We appreciate the opportunity to testify today. We operate the inexpensive book distribution program under a contract with the Department of Education. I request that our testimony be put in the record.
RIF does not replace trained reading teachers. Instead, we motivate children to read and to make sure that they have books to call their own. We have programs in every State, and our 225,000 grass roots volunteers are one of the largest groups of non-political volunteers in the United States.
We recently received an A plus rating as one of the ten most effective charities in the country from the American Institute of Philanthropy. For every Federal dollar invested, RIF programs leverage more than $5 in private support.
RIF works in partnership with the Federal Government, and I sincerely believe that we are one of the Government's best investments. Locally, RIF projects receive Federal money only for books, not for other costs. For every member of RIF's lean staff, 57,000 children are served.
Local groups made up of teachers, parents and other volunteers make all the key decisions. Working together, we reached 3.3 million children in 1997 with our book distribution program. These 4,000 local RIF programs are sponsored by every group imaginable, from churches to Kiwanas to the Maryland Federation of Republican Women.
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Now, let me introduce our new President, Dr. Bill Trueheart.
Mr. TRUEHEART. Thank you, Mr. Chairman, and thank you, Ms. Robb.
I'm honored to be here today as the new President of Reading is Fundamental. The need for intervention to improve children's literacy is urgent and growing throughout our Nation. The demand for our services requires us to serve increasing numbers of children.
That is why we're here today. Reading is Fundamental respectfully requests a fiscal year 1999 Federal appropriation of $18.3 million for the inexpensive book distribution program.
In 1996, the U.S. Department of Education estimated that approximately 6.4 million children in grades kindergarten to third were in danger of becoming illiterate. The evidence on the likelihood of increasing rates of illiteracy for our neediest children is very, very compelling.
I believe that we cannot let another generation of children grow up without the essential tools to become literate citizens.
In 1993, 1994 and 1995, Congress required Reading is Fundamental to send out a call for applications to test the demand for RIF's services. The response was overwhelming. More than 2,000 local volunteer groups from every State applied, eager to serve approximately 1.3 million children, 85 percent of whom were low-income, without access to libraries, received free or reduced lunch, and were at risk of educational failure.
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These children, because they had to be placed on the Reading is Fundamental waiting list, remain there to this day, because we were unable to secure sufficient funds to serve these additional children, despite persistent efforts to raise private funds. The inexpensive book distribution program has been level funded since 1994 at $10.3 million.
Unable to fulfill the needs of this enormous waiting list, RIF stopped requesting applications for participation in the inexpensive book distribution program. Although requests for help continue from every corner of this country.
Had we continued to request applications, we estimate that our waiting list for these literacy services would total at least 4,000 additional volunteer grass roots groups prepared to serve more than 2.6 million additional children.
As the new President of Reading is Fundamental, I was saddened to learn that Congress had requested solicitation of applications for the inexpensive book distribution program but was unable to fully respond to the demand thus created. At present Federal funding levels, RIF cannot meet the demand of local educators, parents and community leaders who recognize the demonstrated value of RIF's reading programs, and who want those vital services for their children.
Although RIF received an increase in fiscal year 1998, for which we are very grateful, that $12 million appropriation will serve only an additional 300,000 children. A million more will remain on the waiting list unless Congress takes action now.
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For a Federal investment of $3.07 per child, RIF's partnership with the Federal Government can provide new books, reading programs and assistance to parents and volunteers who are committed to a literate future for our neediest children. In making this request for increased funding, we are not asking the Federal Government to bear the responsibility alone. RIF allocates funds only to local groups who meet stringent criteria demonstrating that they are unable to operate without Federal assistance to provide books to the children in these communities.
Mr. Chairman, I understand that I've run over, so I will move to my conclusion. I believe it would be unfortunate to deny yet another generation of the Nation's neediest children access to proven effective and fundamental reading readiness and motivational programs, when our Nation has the human and financial to eradicate illiteracy now.
At a minimum, we ask you to provide additional funding to eradicate the longstanding waiting list generated at Congress' request so that literacy services can be provided as soon as possible to those 1 million educationally at-risk children.
Thank you for your past support, and I respectfully urge your continued and increased support for Reading is Fundamental and the inexpensive book distribution program.
[The prepared statement of Lynda Johnson follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Trueheart, give me your funding level again that you're suggesting.
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Mr. TRUEHEART. It's $18.3 million, sir.
Mr. PORTER. We appreciate very much your testimony this morning. I got an education back in 1995 when this subcommittee was required to make so many budgetary cuts in order to meet our deficit reduction guidelines. I heard from a lot of people.
You're right, there's 225,000 out there, I think, because we might have heard from all of them. [Laughter.]
I'm not so sure they're not political. But in any case, I learned a lot about the program that I did not know before. I really did learn a lot about the program and have learned to value it, perhaps much more highly than I did previously. We appreciate your coming here today to further educate us. We're going to do the best we can to provide you the resources that you need to get the job done.
Thank you.
Ms. ROBB. Thank you.
Mr. TRUEHEART. Thank you very much.
[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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Tuesday, February 3, 1998.
WITNESS
SUSAN JOHNSON
JOSEPH McNULTY, HELEN KELLER NATIONAL CENTER FOR DEAF-BLIND YOUTHS AND ADULTS
Mr. PORTER. Sue Johnson, parent of a deaf-blind young man, accompanied by Mr. Joseph McNulty, Director, Helen Keller National Center for Deaf-Blind Youths and Adults testifying in behalf of the Center.
Ms. Johnson and Mr. McNulty.
Mr. MCNULTY. Thank you, Mr. Chairman. We appreciate the opportunity to testify.
The Center is seeking an additional $1 million in our fiscal year 1999 appropriation. Speaking on behalf of the Center this morning is Ms. Susan Johnson.
Ms. JOHNSON. It's an honor and a pleasure to be here to talk to you this morning. I'm the parent of a 21 year old deaf-blind child who has been making his way through the system for the past 21 years. As he has, and as we've tried to raise him, Helen Keller National Center has been our one and only support system through that process.
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When Jake was 16 years old, he began to experience extreme difficulty in every point of his life. The public school system could no longer serve him, and he was placed in an institution at the cost of $70,000 a year.
During those 18 months that Jake was in an institution, it was the hardest time in our lives that we had ever faced with Jake. I began to call Helen Keller National Center over and over and over. They began to help me through the process of getting Jake out of an institution and to Helen Keller National Center to be reevaluated and retrained and try to get him back in our family and in our society.
We're happy to say that Jake is now 21. After spending 20 months at Helen Keller National Center, he is living in a home of his own and working at Olive Garden five days a week rolling silverware. We're incredibly proud of him and very, very thankful for the work and the commitment that Helen Keller National Center made to our family and other people like Jake, who are born without vision and hearing.
Throughout the rest of Jake's life, we expect that Helen Keller National Center will be a part of our life. It's the only resource for deaf-blind people in this United States. There are 11,000 deaf-blind children throughout the United States, and Helen Keller National Center is their resource and their families' only place to turn for help and education.
As Joe said, they are asking for another $1 million in funding this year. And that will be to serve people like Jake who have graduated from Helen Keller, who are making it in the society. But as his life goes on, he has hurdles. Our only place to go is to them for help and support.
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We hope that you will look very seriously at this request and grant it for us.
[The prepared statement of Susan Johnson follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. You're not going to say anything?
Mr. MCNULTY. Not at all.
Mr. PORTER. You don't need to after that presentation.
Mr. MCNULTY. That's right.
Mr. PORTER. We really appreciate it, Ms. Johnson. You couldn't have stated the case better, and obviously we're going to do the very best we can to accede to that request.
Ms. JOHNSON. Please look closely.
Mr. PORTER. Mr. Hoyer.
Mr. HOYER. I should know the answer to this question. Where's the Helen Keller Center located?
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Mr. MCNULTY. The headquarters is located up in New York, on Long Island. We operate 10 regional offices, and we have affiliations with 44 State and local agencies throughout the country.
Mr. HOYER. You're from New York, did you access it that way?
Ms. JOHNSON. Actually, we're from about everywhere, because my husband's in baseball. We're in a bunch of different States. But we're actually, our home is in Florida, and then Jake actually went to Long Island and lived there for 20 months and lived on their campus.
Mr. HOYER. Your husband's in baseball?
Ms. JOHNSON. Yes, sir. My husband's David Johnson that used to be with the Orioles.
Mr. HOYER. Who did he play for? [Laughter.]
We're glad to have you here, and it's nice that you brought him along.
Ms. JOHNSON. I'm glad he came with me.
Mr. PORTER. Thank you very much, Ms. Johnson.
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Mr. HOYER. Obviously, Jake has two great parents. That's an important aspect in his life.
[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.]
Tuesday, February 3, 1998.
WITNESS
JOHN S. GUSTAFSON, NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE DIRECTORS, INC.
Mr. PORTER. John S. Gustafson, Executive Director of the National Association of State Alcohol and Drug Abuse Directors, Inc., testifying in behalf of the Association.
Mr. GUSTAFSON. Good morning, Mr. Chairman and members of the subcommittee.
Mr. PORTER. Good morning.
Mr. GUSTAFSON. Thank you for the opportunity to testify before you today, and to make our recommendations for the increased investment in alcohol and other drug prevention treatment and research services.
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Specifically, we are supporting a 15 percent increase of $254 million to the Substance Abuse block grant that is currently funded at $1.36 billion. The funding level of $1.36 billion includes the two year transfer of $50 million appropriated to provide treatment services to the former recipients of SSI and SSDI. Although the legislative authority for this additional $50 million was only for 1997 and 1998, we are urging that this level of funding be maintained based on the need for treatment.
We also are supportive of funding increases for the knowledge development and application programs within the Centers for Substance Abuse Treatment and Centers for Substance Abuse Prevention as well as the Safe and Drug Free Schools Program and the research budgets for NIDA and NIAAA.
In supporting these increases, Mr. Chairman, we emphasize the need for new and stronger linkages between these Federal programs and the substance abuse block grant that is the primary commitment of Federal resources for prevention and treatment in partnership with the States. Our national association represents the concerns of State alcohol and drug abuse directors who administer and fund prevention and treatment programs to a network of some 7,000 community based not for profit organizations.
I would like to discuss briefly three issues with you today. First of all, welfare reform and the need for treatment. It is estimated that over one million welfare mothers have substance abuse problems that require treatment. As welfare reform is implemented, States are under pressure to find the resources needed to provide treatment services to get these mothers back to work.
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There are now long waiting lists for treatment. Without new resources, it will be difficult for moms receiving temporary assistance for needy families, TANF, and others in need to receive appropriate treatment.
Secondly, prevention. Prevention of alcohol and other drug problems in our youth remains a very high priority. As a Nation, we continue to be alarmed by the number of youth who are initiating alcohol and drug abuse. The Office of National Drug Control Policy, ONDCP, has begun its media campaign in earnest. Now it is up to the States to provide the prevention and treatment resources that can logically be expected as a result of that campaign.
Mr. Chairman, our country's substance abuse problem is enormous. Over 13 million Americans use illicit drugs. Nine million youth under the age of 21 consume alcohol. Of these, 4.4 million are binge drinkers, including 1.9 million heavy drinkers.
On an annual basis, the publicly supported State alcohol and drug abuse system administers about $4 billion of substance abuse services annually. States spend over $583 million per year on prevention services. About 1.9 million treatment admissions comes into that system every year.
Every year, we conduct a waiting list of our members to determine the need for treatment, and included in the written testimony is a state by state breakdown for members of this committee as to how those waiting lists play out.
NASADAD is well aware of how important our treatment system is to getting TANF moms and others back to work. We have been working closely with the Department of Labor and the private industry councils to help ensure the success of the two-year welfare to work program. One thing that is clear to all of us, State administrators, providers of services, employers and welfare experts, and that is that the long waiting lists for treatment are a barrier for getting these moms back to work.
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It is also clear that unless TANF recipients get the treatment they need, job retention will be a major problem for families, States and employers.
Now, if we're successful in convincing members of the Congress to make these additional appropriations, let me just highlight very briefly some of the services that States would be prepared to engage in. First and foremost, reduce the number of people on current waiting lists. Develop new services for women TANF recipients, such as weekends or evening treatment programs, and lunch prevention education programs. Establish employee assistance programs for those that hire welfare recipients. Create new mentoring programs that engage business leaders in reaching out to youth to build esteem and life skills, as well as avoid substance abuse.
Quite often at these hearings, we are asked to speak to the treatment effectiveness issue. I would commend to the committee's recommendation two very recent studies, one conducted by the National Institute on Drug Abuse entitled the Drug Abuse Treatment Outcome Study and the second by SAMHSA, Substance Abuse and Mental Health Services Administration, the National Treatment Improvement Evaluation study. Both are long term, longitudinal studies that point to the clear benefit of treatment in terms of reducing illicit drug use, increased productivity and reducing illegal behavior.
I want to conclude, Mr. Chairman, with reference to an issue that's been somewhat contentious, both on the authorization side and certainly on appropriations. That is the formula that forms the basis for delivering the block grant monies to the States. Our membership takes very seriously the admonition from the appropriators last year to try to come to agreement and consensus on how to best distribute these funds.
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We have recently convened a meeting of our members and compiled a set of recommendations that is being embedded throughout the entire State membership. One of the major issues we want to avoid is the serious disruption that is created by a dramatic shift in the formula indices from one year to another. As I mentioned, most of these providers are local not for profits. When you have one State move in a positive direction of 20 percent and another State in the opposite direction, it creates massive disruptions of services, and actually throws people out of treatment.
My written testimony provides detailed recommendations as to how we would like the formula to be considered. We are working hand in glove with the authorizers to make our recommendations known.
Thank you very much for the opportunity to testify, and I look forward to responding to any questions that you may have.
[The prepared statement of John S. Gustafson follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Gustafson, tell me again what increase you're recommending and on what base.
Mr. GUSTAFSON. On the base of $1.36 billion for the current block, we are recommending an increase of $254 million.
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Mr. PORTER. And what percentage would that be, do you know?
Mr. GUSTAFSON. Approximately 15 percent, Mr. Chairman.
Mr. PORTER. All right. Thank you very much for your testimony, Mr. Gustafson.
Mr. GUSTAFSON. Thank you, sir.
Tuesday, February 3, 1998.
WITNESS
ADA SUE HINSHAW, AMERICAN ASSOCIATION OF COLLEGES OF NURSING
Mr. PORTER. Our next witness is Ada Sue Hinshaw, Ph.D., R.N., Dean of the School of Nursing at the University of Michigan in Ann Arbor, Michigan, testifying in behalf of the American Association of Colleges of Nursing.
Ms. Hinshaw, it's nice to see you again.
Ms. HINSHAW. Thank you. It is nice to again be in front of the committee and have an opportunity to let you know about the issues and concerns for the American Association of the College of Nursing.
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In addition to the introduction as Dean of the School of Nursing at the University of Michigan in Ann Arbor, I do want to clarify that I was the Director of the National Institute for Nursing Research for seven years. That's important in light of my testimony, so I want to be sure you know where my biases stand early, and very fast.
For fiscal year 1999, AACN is recommending a 100 percent increase for NINR over the 1998 budget to $127 million. For AACPR, we are asking for an increase of 10 percent to slightly over $161 million.
For the Nurse Education Act, we are requesting an increase of 8 percent over 1998 to a level of $70.9 million. For the scholarships for disadvantaged students, we seek an increase of 8 percent over the 1998 level to $20.235 million.
Now what I'd like to do is primarily speak to our very strong recommendation for the NINR. There are three reasons that we are really pursuing a doubling of the resources to this particular institute at NIH.
As unusual as this is, at this point, NINR is literally fighting success in terms of its research programs and its research training programs. It's a good phenomenon in the sense of the kinds of research that is being produced, the number of researchers who are now engaged in very exciting projects around promoting health, around increasing the care of the chronically ill individuals, of providing increased care for the acute nature of the hospitals that we are currently working in. And also looking at the health care systems themselves as they impact the client and the patient incomes in terms of quality and cost.
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All of these kinds of research programs are parallel and very complementary with the biomedical research mission.
Secondly, nursing science has now advanced rapidly to the point in which we are conducting a number of clinical intervention studies. Intervention studies are more intensive in terms of resources. They take a longer number of years to conduct. Therefore, the amount of resources which need to be invested in any one research study over a period of time is much greater than it was earlier in the past 12 years, a decade ago, rather, when the institute began.
The research training needs for nursing are also still quite high. And there is a drain of nursing faculty, as there are many of our people in the country. And there's going to need to be a change, a new cadre of individuals who are brought along and allowed and helped to mature over this time.
I would like to also suggest that we look at the fact that the NINR has the smallest funding level of any institute in most of the centers at the NIH. Literally, the funding base is less than one-third of the next closest institute. Even doubling, or requesting a doubling of the money to $127 million, the next institute is over $200 million in terms of support.
But that is not really the reason for why we need to really look at increasing the resources for this particular institute. The reasons are the differences that the research is beginning to make. For example, the nursing research focuses heavily on cultural relevant kinds of health care, providing recently a new study at UCSF Arthritis Center in California in which it is clear that now Spanish speaking language programs for our people with arthritis are now available to Spanish populations in that area. Community outreach, classroom education, etc.
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Another example is that today's shorter hospital stays save money, but quite frankly, they mean that patients go home sicker at discharge and they need more support at home. So the studies that NINR have funded, an entire series of them that look at comprehensive discharge planning, and then follow-up in the community by advanced practice nurses, have allowed in a series of about four to five populations now for a savings of health care in general between 27 and 37 percent per case.
So these are very important and very exciting studies. They are tracking both quality of care and cost of care.
A third study that is very important, is going to be making a difference, is that different types and intensities of pain trouble patients and quite frankly, challenge caregivers a great deal, such as nurses. An NINR-funded research study has discovered that for women in particular, a type of pain medication, kappaopioids, more effectively reduces high levels of intense pain than morphine drugs and has fewer negative side effects.
This study as well will now be replicated and followed up on as an exciting area of research having to do with symptom management.
Essentially, I would simply like to speak for a few minutes, for a few seconds, excuse me, I heard the buzz, to the Nurse Education Act as a key source of Federal financial support for nursing education programs and nursing students. We are seeking an 8 percent increase for the NEA for this coming year.
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I thank you and would entertain questions.
[The prepared statement of Ada Sue Hinshaw follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Hinshaw, thank you very much for testifying. I might say to you and to all the witnesses that as I sit here and listen to the very compelling testimony, I think that it is probable, with the kinds of increases in each of the areas that are being requested, are probably a year off in reality. And that we have to continue to see the kind of economic growth that we've seen recently continue in order to achieve them.
I want to assure all of you that we will do the best we can within the resources we have to meet the needs that are very obvious, and all of our witnesses have mentioned in a number of different areas. I think probably it's going to be a little longer time than all of us would want, and dependent upon a strong economy.
I think eventually we will get there, and probably sooner rather than later. Thank you for your testimony, we appreciate it very, very much.
Ms. HINSHAW. Certainly. Thank you for your consideration.
Tuesday, February 3, 1998.
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WITNESS
EILEEN BREWER, M.D., AMERICAN SOCIETY OF PEDIATRIC NEPHROLOGY
Mr. PORTER. Eileen Brewer, M.D., President, American Society of Pediatric Nephrology, testifying in behalf of the Society.
Dr. BREWER. Chairman Porter and members of the subcommittee, I'm the current President of the American Society of Pediatric Nephrology. In my other life, I'm a faculty member of Baylor College of Medicine and Chief of the Renal Service at Texas Children's Hospital in Houston, Texas. I see patients every day, and all of them are infants, children and teenagers with kidney disease.
By way of background, the American Society of Pediatric Nephrology, or the ASPN, is a non-profit organization that was founded in 1969 to serve as an advocate for the estimate 150,000 children with kidney disease in this country. About 10,000 of these young citizens are already on dialysis, have a kidney transplant or have chronic renal failure that will lead to those modalities.
ASPN represents over 90 percent of the physicians devoted to caring for these children with kidney diseases. One of our principal missions is to promote research that we hope will one day lead to the eradication of these diseases that ravage the lives of this most vulnerable segment of our population.
The ASPN participates with the American Society of Nephrology, the National Kidney Foundation, the American Society of Transplant Physicians and the Renal Physicians Association and the Council of the American Kidney Societies. We as a group support research funding to help all of the Americans that are suffering from kidney disease.
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Mr. Chairman, I do want to take this opportunity to thank you and the members of the subcommittee for the leadership you've demonstrated in the past. Because of the support lent by you and members of this committee and your predecessors, this Nation has certainly built a remarkable health record. That progress has had a dramatic impact on the care of children with renal disease as well.
For example, the hereditary disease, cystinosis, which is a metabolic disorder that affects the kidneys, the eyes and the pancreas, can now be treated so as to delay or prevent the worst effects on children. Currently there are two studies in progress, major clinical research studies to find ways to prevent and treat the devastating consequences of two kidney diseases that are particularly common in childhood and adolescence. Those are the hemolytic uremic syndrome and IGA nephropathy.
There have also been remarkable strides in prolonging and improving the lives of children with end stage kidney disease. Kidney transplants now have a better success rate, and even those children and teenagers who remain on dialysis have fewer hospitalizations and they lead a better quality of life.
But each advance enables us to concentrate more on the remaining challenges. About one-third of the children who now have end stage kidney disease were born with congenital renal anomalies. These anomalies prevented the normal formation of or destroyed their kidneys.
We currently do not know enough about basic renal development to aid us in preventing or slowing the progression of renal failure for these children, even if we diagnose their condition before birth. In addition, for each one million children in the United States, 50,000 will develop urinary tract infections which can damage developing renal tissue and lead to permanent scars in the kidney.
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About 40,000 more children will require evaluation for hematuria and proteinuria, which are signs of progressive kidney disease. Another 50,000 children will be diagnosed with hypertension that can cause renal failure in adulthood. And an additional 5,000 children will develop diabetes, and 2,000 of these will require dialysis or kidney transplant in late childhood or adulthood.
We must do more to identify and treat chronic kidney disease in its earlier stages in childhood and adolescence to prevent end stage renal disease in later life. In this regard, we support the National Kidney Foundation's initiative to evaluate proteinuria as an early sign of progressive kidney disease.
While we've seen progress on several fronts, much remains to be done. When chronic kidney failure occurs in infancy and childhood, normal growth and development are impaired due to a variety of factors which include altered nutrition, impaired bone formation, and resistance to normal growth factors like growth hormone.
While many advances have already been made, including the discovery that treatment with supplemental growth hormone increases growth, most children with chronic renal failure do not obtain the normal adult height. In addition, the effects of kidney failure on the developing brain are very poorly understood. Learning disabilities and mental retardation may be consequences of kidney failure in infancy and early childhood.
More research is needed to better treat and prevent the adverse effects of chronic kidney failure on growth and development in pediatric patients.
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Kidney transplantation still remains the therapeutic choice for children with end stage renal disease. Unfortunately, studies show that the improvements we have seen in transplant survival among adults have not been realized in our pediatric patients. We scientists attribute this to many factors, but the most important appears to be the child's own immune system, which seems to be more inclined to reject the transplanted kidney.
If we don't do something to find better survival of transplanted kidneys, about half of all children receiving transplants over the next five years will be back on dialysis by the end of the decade.
We want to commend this subcommittee for asking the NIDDK to develop an interagency plan for adult and pediatric kidney disease, because we feel it is especially important to distinguish between adult and pediatric research. We support the ad hoc group for medical research funding, which calls for a 15 percent increase in funding for the NIH in fiscal year 1999. We also would recommend that this subcommittee allocate $3 million to the NIH for research on the unique needs, including the immunosuppressive needs, of children and adolescents suffering from diseases that lead to chronic kidney failure.
Thank you, Mr. Chairman.
[The prepared statement of Eileen Brewer, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Brewer, thank you very much for your testimony. We apologize to you and all of our witnesses for the tyranny of the bell. Unfortunately, there's so many people that want to testify that we have to limit testimony to five minutes. For that we very much apologize. Thank you for coming to testify this morning.
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The Chair would ask Mr. Bonilla to chair.
Tuesday, February 3, 1998.
WITNESS
RACHEL GONZALES, NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS
Mr. BONILLA [assuming chair]. Thank you, Mr. Chairman.
The Chair would like to call Rachel Gonzales, Chairperson of the National Association of Community Health Centers.
Before Ms. Gonzales begins, I'd like to point out to my colleagues on the subcommittee and to those who are here with us today that Rachel is an example of what it means to truly be a community public servant. When you began your career as a secretary in the clinic 13 years ago, we recall it was housed in a trailer, you had only two exam rooms.
Then you worked your way to the top and the clinic also grew under your guidance. Before too long, you were moved to the current location, which was once a hospital storage facility, and have since created three additional sites where patients can come to receive care that are aside from the current location.
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Today through your perseverance and under your guidance, commitment and dedication, as a CEO of the clinic, I was proud to be at the ground breaking ceremony just recently that will eventually house on that site a facility that's five times the size of its current location to accommodate the increase in demand for your quality service that you now have in Uvalde County.
You are a great inspiration for a lot of folks out there, young people who look to someone like yourself and say, gosh, here's somebody who not only can rise to the top in a very brief period of time, and that's one thing, but leave behind all of the great care that your clinic has provided over the years is even more important. Because all of the families that are affected and the people who come in have no place else to go. You made a difference in their lives and I thought I should point that out before you begin your testimony this morning.
Thank you for being here.
Ms. GONZALES. Thank you, Congressman, very much.
Good morning. I appear on behalf of the National Association of Community Health Centers in support of increased funding for 1999 for the Consolidated Health Center program. Health centers provide quality, cost-effective health care to patients in urban and rural medically under-served areas. It is for this mission that we ask the subcommittee's continued strong support.
A written statement has been submitted, so I will only summarize and underscore a few of the pressing issues that face all health centers. First, I want to thank the subcommittee for strengthening the health center program over the last two years. Under the leadership of Chairman Porter, appropriations for the program have increased by $68 million in a period when the subcommittee had to make difficult choices.
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We are particularly grateful to Congressmen Henry Bonilla and Jay Dickey for their efforts on our behalf. These new funds are making services available to many more uninsured patients through the establishment of new health center sites in previously unserved areas.
However, there is more work to be done. Most existing health centers have not seen an increase in their grant dollars for the past eight years. Yet, nearly all are inundated with escalating numbers of uninsured people, over one million in the past three years.
Health center revenues from other sources, especially Medicaid, are declining as managed care increases. These centers need additional support to meet the growing needs in our communities.
I'd like to tell you about our health center and the unmet needs of our community. Our agency is a rural community and migrant health center located 80 miles southwest of San Antonio, Texas. Services are provided from two health center sites, one in Uvalde and one in Leakey, serving Real and Edwards County.
The total population of the three counties is approximately 30,000. More than half of whom are members of low income, uninsured families spread across an area that is virtually the same size of Connecticut.
Our agency serves 5,000 people, 58 percent of whom are uninsured, and 65 percent are at or below the poverty level. Most are Hispanic and many are farm workers.
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The typical elderly patient of our health center suffers from at least three serious conditions: diabetes, hypertension and congestive heart failure, whose care normally requires anywhere from five to ten different prescriptions. The Uvalde site, with three full time providers, will serve between 75 and 90 patients daily, and fill an average of 90 prescriptions through our in-house pharmacy. The Leaky site, with one full time provider, also has an in-house pharmacy, the only pharmacy anywhere in Real and Edwards Counties.
The needs of our community and its uninsured are growing. at the present time, patients calling for appointments must wait at least two weeks due to our heavy patient load. We are aware of individuals who do not have a family doctor, and when they become ill, wait until their condition has worsened before they seek attention. Then they go to the emergency room.
The same situation applies to many pregnant women. There is not enough obstetrical care in our area.
We currently need at least five more full time primary health care providers. But it is difficult to recruit, and even harder to retain, health care professionals for the trying work of practicing medicine in rural areas. Our resources are not enough to support primary care, health education, and preventive care to all who need it.
If we could hire these additional providers, we could serve 4,700 new patients and provide over 19,000 new office visits annually.
Our story is just one of many across the Nation. As Chair of NACHC, I am speaking on behalf of over 940 health centers in over 3,000 urban and rural communities. Together, these health centers care for over 10 million children and adults, one in every ten uninsured individual relies on the health center for care.
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Our centers are local, non-profit, community owned health care programs that are governed by volunteers who take responsibility to ensure that responsive and affordable health care is provided to all who need it. Patients are charged on a sliding fee scale to insure that income or lack of insurance is not a barrier to care.
A host of studies and reports have shown that the health centers are one of the most efficient health care providers anywhere. Investing in health centers is one of the wisest decisions this subcommittee continues to make.
For example, every $100 million in Federal grant funds leverages another $200 million in other resources and helps provide care to another one million patients. This creates healthy workers and students.
We provide an economic base in our most financially depressed urban and rural communities and create meaningful jobs, including new health care professionals.
An additional Federal investment in health centers would ensure the availability of primary and preventive health care to the growing numbers of uninsured. Priority should be given to strengthening and preserving the existing health center infrastructure.
On behalf of NACHC and the Uvalde County Clinic, I'm asking you to please consider our recommended level of $926 million for the Consolidated Health Center Program for fiscal year 1999. This would ensure us being able to serve an additional 350,000 low income, uninsured individuals.
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Invest in health centers. Build upon what has worked. Look at the long history and success of the program, and continue to invest in programs that mobilize communities to solve problems at the local level.
Thank you for allowing me to speak today.
[The prepared statement of Rachel Gonzales follows:]
"The Official Committee record contains additional material here."
Mr. BONILLA. Thank you, Rachel, for your excellent testimony. You know we'll do the best we possibly can on this subcommittee to help you.
Ms. GONZALES. Thank you, Congressman.
Mr. PORTER [resuming chair]. Thank you, Mr. Bonilla.
We have departed slightly from our order of witnesses at Mr. Bonilla's request. We now go back.
Tuesday, February 3, 1998
WITNESS
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DONALD E. WILLIAMSON, M.D., ASSOCIATION OF STATE AND TERRITORIAL HEALTH OFFICIALS
Mr. PORTER. Donald E. Williamson, M.D., State Health Officer, Alabama Department of Public Health and President of the Association of State and Territorial Health Officials, testifying in behalf of the Association.
Dr. Williamson.
Dr. WILLIAMSON. Thank you, Mr. Chairman.
I'm here today representing the Association of State and Territorial Health Officials, and serve as that Association's President. We have the privilege of representing the chief health official in each State and territory of the United States.
If you will allow me to begin with our association's fiscal year 1999 recommendations for Section 317 immunization program funding administered by the Centers for Disease Control, ASTHO recommends $539 million for this critical program. This does represent a significant increase over fiscal year 1998 funding. However, funding over the past several years has been reduced from $528 million in fiscal year 1994 to $427 million in the current fiscal year.
ASTHO is particularly concerned about the President's budget request of $406 million for fiscal year 1999, and feels this is based upon mistaken assumptions about projected carryover.
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During fiscal year 1997, States actually spent a total of $539 million. A total of $467 million was appropriated in fiscal year 1997, but States also used carryover dollars from calendar year 1996 to conduct their fiscal year 1997 immunization activities. This indicates they actually needed considerably more funding than was appropriated to achieve the national goal of fully immunizing 90 percent of two year olds.
The latest data on the States' progress provided by the Centers for Disease Control show that in 1996, an average of 78 percent of two year olds were fully immunized compared with an estimate of 50 percent in 1993, before significant increases in the program occurred. States have made excellent progress in achieving our national goal. However, we have not yet arrived.
The cut in fiscal year 1998 funding comes at a time when States are estimated to have reduced their carryover funds for calendar year 1997 by two-thirds. In fact, projected estimates of carryover funds for 1997 are now likely to be considerably below the $60 million assumed last fall.
In addition, it is our understanding that carryover funds are likely to be close to zero for calendar year 1998. The fiscal year 1998 cut in funding has resulted in the following. First, a median cut of 17 to 18 percent in State and territorial immunization infrastructure budgets, state budgets for core activities have been funded at only 74.5 percent of original estimates negotiated by CDC and the States, and third, preliminary reports of ASTHO confirm that States will change the way we're conducting our immunization programs.
Specifically, States are reducing activities, including less provider training, reduction in outreach to communities and parents, reduction in linkage activities to WIC and welfare sites, reduction of administration of shots in local clinics, and elimination of reminder and recall activities. From a public health perspective, perhaps the most ominous reduction is a further reduction in development and implementation of immunization registries.
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What the Section 317 immunization program needs for fiscal year 1999 is not further cuts, but rather, a significant increase to avoid the risk of another emergence of vaccine preventable disease, such as measles and whooping cough, which provided the original impetus in fiscal year 1994 for the national vaccine effort.
ASTHO also recommends $705 million for Title V Maternal and Child Health Block Grant which is the amount authorized by Congress to meet the assessed need. Over the past decade, we have seen increased demand for MCH program support due to increasing numbers of uninsured and underinsured women and children. While enactment of the Health Insurance Portability and Accountability Act and the Children's Health Insurance Program are welcome improvements for many, we are facing a new round of private insurance premium increases which will especially impact the working poor.
MCH programs have not experienced a reduction in demand for services, only an increase. And this can be expected to continue as long as health insurance is unaffordable for many of America's families. MCH programs expect to experience increased demand due to the enactment of the Child Health Insurance Program, because they are an important link in the efforts to locate, assess and refer eligible children for expanded Medicaid and private insurance coverage under the program, in addition to providing direct medical services.
Next, ASTHO urges the committee to provide $182 million in funding in fiscal year 1999 for the preventive block grant, which provides the only flexible funding to States to address critical health problems. This amount is the level that States have estimated is needed in order to maintain continued progress toward meeting the identified Healthy People 2000 goals.
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This program, which in fiscal year 1995 was funded at $160 million, has been steadily eroded. Categorical programs are appropriate when addressing national health problems, such as HIV/AIDS and immunizations. But there are no funds for many State and community specific problems except through the preventive block grant.
Finally, ASTHO recommends $90 million for the CDC Office of Smoking and Health for fiscal year 1999. The Office of Smoking and Health has worked to deglamorize tobacco use among teens and to empower youth involvement in tobacco control efforts. The program has particularly worked to provide funding to all 50 States for tobacco control under its IMPACT program.
More must be done, however. Tobacco use is the single largest contributor to chronic disease and premature death in the United States. Smoking rates among high school seniors are at all time highs. And smoking among eighth through tenth graders has increased more than 50 percent since 1991. Without doubt, tobacco use is clearly a problem that begins with children, with almost 90 percent of adult smokers starting smoking at or before the age of 18, and the average smoker beginning at age 13 and becoming a daily smoker by age 14 and a half.
Thank you again for the opportunity to present ASTHO's funding recommendations for fiscal year 1999 on these important public health programs. We appreciate the support this subcommittee has provided for public health and look forward to working with you during the coming years.
Thank you, Mr. Chairman.
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[The prepared statement of Donald E. Williamson, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Williamson, you get the award for getting more words in in five minutes——
Dr. WILLIAMSON. Thank you, sir. [Laughter.]
Mr. PORTER. Let me ask something, though. It was not very long ago when this Administration made, as a centerpiece of their appeals in the State of the Union address and their budget, the immunization of children. You're telling us now they're underfunding the program. Can you tell me what their rationale is, if you know?
Dr. WILLIAMSON. Well, I would not purport to speak for the Administration. But we believe it would relate to their assumptions about carryover. However, and we know this subcommittee has been concerned about carryover, but States have attempted to respond to that concern. Less than half of our States reporting any carryover now.
And the projected carryover, $60 million, which I think that number was arrived at around the first of December, by the end of the month was substantially less when CDC was beginning negotiation with the States. That carryover is in fact, as we understand it, programmed into the fiscal year 1998 operations. And in fact, we expect no carryover at the end of this fiscal year.
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I think our real concern, Mr. Chairman, is that while we have made historic progress in immunizing the children of America, that one critical component of that is to ensure that a child, wherever they present for health care, we can find out their immunization status. That really hinges on immunization registries.
And now to pull back those dollars that are critical to finally completing those registries that a lot of us have been working on we fear could in fact certainly prevent further progress and perhaps erode current efforts.
Mr. PORTER. Obviously we'll look into this independently, and we'll question the Secretary about it when she appears. We'll try to get to the bottom of it and be responsive to your concerns.
Dr. WILLIAMSON. Thank you, sir.
Mr. PORTER. Thank you for testifying.
Tuesday, February 3, 1998.
WITNESS
LYNNE V. CHENEY, AMERICAN ENTERPRISE INSTITUTE FOR PUBLIC POLICY RESEARCH
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Mr. PORTER. Lynne V. Cheney, Senior Fellow, American Enterprise Institute for Public Policy Research, testifying in behalf of AEI. Lynne, we're delighted to see you. We're great admirers of you and your husband. I can't think of two people who have given more in terms of public service to this country than the Cheneys. I have to admit that I thought your husband would have made a wonderful President and you would have made a wonderful First Lady.
Ms. CHENEY. Well, how can I top that.
Mr. PORTER. Maybe you'll all reconsider.
Ms. CHENEY. Thank you very much, Mr. Chairman, and Congressman Hoyer, who's fine State I once lived in, and Mr. Bonilla, whose fine State I am now a citizen of.
I appreciate your having me here today. You've been listening to many concerned citizens who brought forward many worthy causes to be funded by the Federal Government. I am here on quite a different mission. I'm not here to suggest how you might spend money, but to suggest how you might save it. And that is by not providing further funding for school-to-work programs.
As I noted on the editorial page of the New York Times this morning, these programs sound like a terrific idea. Schools should do a better job of preparing students for the work place. But as I also noted in the New York Times, the school-to-work programs that are being underwritten by a $2.3 billion Federal plan, these programs are now up and running in 37 States, and will soon likely to be in all 50. These programs are causing an enormous amount of parental consternation all across the country.
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These programs are not targeted at vocational education. By Federal law, they include all students. What they're doing is assuming unwarranted authority over the students' lives. For example, a central thesis of school-to-work programs is that eighth graders should choose careers. And to help them along, schools administer tests of their interests and their personalities and make suggestions for them, which often have nothing to do with what the students might harbor as their own ambition.
I talked to a mother in Nevada whose daughter is an honor student and who wants to work for NASA. The school told her that she would be better in sanitation or interior design.
A Pennsylvania woman told me about a youngster in her neighborhood, this woman's name is Eunice Evans, told me about a boy in her neighborhood who wants to be a doctor, but the school told him he would be better off being a gas station attendant or truck driver. Eunice Evans pointing out that school-to-work programs typically lower, try to lower the aspirations of youngsters who want to undertake a high profile career, Eunice Evans said, who are these people who are playing God.
I think that is a very, very compelling question. Not only do school-to-work programs try to dictate job choices, they seek to inculcate attitudes, such as the belief that individual striving should be put aside in the name of group achievement. Having students work in teams is one way of fostering this thinking, and reinforcing it is group rating. A Texas Workforce Commission document suggests that teachers give every member of a team the exam grade received by the lowest scoring member as a way of supporting and assisting the low achieving members.
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You can see why these programs are making parents very angry. I set out in my op ed piece this morning many other aspects of these programs that I think are damaging our schools. But let me just emphasize one in particular. School-to-work programs typically say, all subjects have to be related to the work place. Everything a student studies should be related to the work place.
In Salada, Colorado, for example, the entire K-5 curriculum, reading, writing, social studies, arithmetic, for an entire year, recently, was related to careers in health care. A document that was handed out at a Kansas school-to-work gathering said, well, all right, you can teach things like literature, but it has to be literature that looks at different kinds of work and workers.
We have a long tradition in this country of using our schools to prepare citizens and not just workers. And we've always done this best when we have had students read literature and history, not for what they can say about the work place, but for what they offer as insights into the human condition.
The tradition of the liberal arts is being severely damaged by school-to-work. And it is that tradition that was so named because the word libertas in Latin means liberty, the liberal arts, have often long, and I think rightfully been seen, as a way of training people in the habits of independent thinking necessary in a democracy.
Well, all across the country, as I say, there are parents who are very upset about these programs. And it's really them I'm representing today, though I am at the American Enterprise Institute. I do hope that members of this subcommittee will listen closely to what these citizens have to say.
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[The prepared statement of Lynne Chaney follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Lynne, I'm very interested in what you have to say. Because I've always felt that when I was growing up, there was a tendency at a later age, maybe 17, to choose a career path. Our higher education system was organized in such a way to encourage early career path choices in concentrations on preparation for careers and not the broad, liberal education that I very much regret that I never got.
I spent my time studying business finance when I should have been studying languages or studying engineering subjects when I should have been studying philosophy and literature. I think you're absolutely right, that if that's what we're doing to our young people through this program, that's exactly what I don't want to see done. I think it is even more than citizenship, it is culture, it is a lifetime of expanding your mind instead of narrowing it.
That to me is the function of our education system more than any is to let people reach the level of their abilities and the extent of their dreams. If we aren't doing that, if we're narrowing those choices and narrowing their focus, we're making terrible mistakes, I think.
Ms. CHENEY. The New York Times, you know, editorial pages put their own titles on op ed pieces you write. They called my op ed piece this morning Limited Horizons, which I thought was a very, very good choice. Because I'm afraid that's what school-to-work programs are doing.
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Businessmen do say, without question, that our schools need to do a better job. But when you ask them what they mean by that, and there was recently a poll done by Public Agenda, what they mean is, they want new employees out of the schools who can write effectively, and calculate.
The complaints that Public Agenda detailed in its poll were, you know, I asked this person to write a small report and he or she doesn't know about commas or paragraphs or grammar. It's the basic skills that businessmen want. I don't believe they really want this inculcation of attitudes and this stuff, early choice of careers.
Mr. PORTER. I would add to that, I think the most important thing for developing in a child is imagination and understanding of the broad world out there and how to imagine and dream it in ways that may improve it.
Ms. CHENEY. Well, I hope that my testimony will be of some use to you when it comes time to think about further funding of the School-to-Work Opportunities Act of 1994, or when the Careers Bill comes back to the House again, as I'm sure it will, after it goes to the Senate. Because both of these are part of the problem.
Mr. PORTER. Mr. Hoyer.
Mr. HOYER. Mr. Chairman, like you, I am a fan of, an admirer of, both the work of our former colleague Dick Cheney and of Lynne Cheney's work as well. Although I admire her work, I don't always agree with it. I think I may not agree with it in this instance, although clearly, I do agree that the anecdotes you use are not supportive of the program which you believe ought to be reduced, if not eliminated, in funding.
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Without asking the specific questions, Lynne, I would very much like to follow up with you on the specifics. For instance, if Governor Bush knows that that's happening in Texas, I would presume he would want to look at that himself, or Governor Miller in Nevada, or Governor Ridge in Pennsylvania, in terms of Christine Jensen in Nevada and I thought it was a particularly egregious example that you used in Pennsylvania.
Because anecdotes can be very powerful, very frankly, I'd like to follow up and find out what the situation is, particularly if somebody wanted to be a doctor and was recommended to be a sanitation worker or truck driver or gas station attendant.
I don't know, I'm sure you probably read the autobiography of Malcolm X, in which Alex Haley cites that as a specific example of why Malcolm X was so hostile to the establishment community for most of his life, because of exactly an example like that. You're absolutely right. If these examples exist, they are wrong. I don't necessarily follow, therefore, that the program is wrong, because I'm not sure that I agree with you in total. Clearly, I think the business community does in fact want people who can think, which is what you're talking about, as opposed to just do.
On the other hand, we are identified in America by what we do. What's your name, and the inevitable second question is, what do you do. So the objectives of school-to-work clearly are to give somebody an answer to that question. In welfare to work, which was universally supported, not necessarily the specifics, but of the concept that we expect each other to work to the extent possible, and carry our share of the load as citizens. One aspect of good citizenship is in fact working.
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But I agree with you that the examples you use are examples which would offend, I think, most of us.
Ms. CHENEY. They're not hard to find.
Mr. HOYER. Including the dumbing down of giving the score to the lowest scorer in a team or group. I agree on teams and partnerships, all of that is good. But if we shoot for the lowest common denominator as opposed to the highest, we are making a mistake. I think your premise there is absolutely correct.
Ms. CHENEY. It's been my observation, and I don't know if you would agree with this, either, but it's very hard for Governors when there is a block of Federal money that they can get not to take it. We went through this with Goals 2000. Even Governor Allen, who was more opposed to Goals 2000 notions than perhaps anybody else in the Nation, any other Governor, ended up taking the money. What they do is try to do the least damage possible with it and the most good once they have it.
The school-to-work legislation is full of requirements that don't allow you to do the least damage possible. And what happens is this legislation empowers the Texas Education Agency, for example, whose ideas on education I think are often at cross purposes with the ideas of parents.
So even though the Governor is in charge of the State, once that money comes into the State, I'm afraid that people use it in all sorts of ways that philosophy the Governor might be in full accordance with.
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Mr. HOYER. In any event, I'd love to follow up with you on specific anecdotes.
Ms. CHENEY. I'll put you in touch with these mothers and people.
Mr. HOYER. Thank you very much.
Mr. PORTER. Lynne, as always, your testimony has been very effective. And we very much appreciate your coming.
Ms. CHENEY. Thank you very much for allowing me to come today.
[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.]
Tuesday, February 3, 1998.
WITNESS
GORDON AMBACH, COUNCIL OF CHIEF STATE SCHOOL OFFICERS
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Mr. PORTER. Gordon Ambach, Executive Director, Council of Chief State School Officers, testifying in behalf of the Council.
Mr. Ambach.
Mr. AMBACH. Mr. Chairman, Representatives Bonilla, Northup and Hoyer, it is a privilege to be with you this morning and to take this opportunity, first and foremost, to applaud the actions that your committee has taken in the past two years on the investment in education. I say that on behalf of the State superintendents and commissioners across the country.
I wanted to say particularly, Mr. Chairman, to you, I applaud your leadership in the comprehensive school reform effort, which was first put into the appropriation for this year and which we hope will continue to thrive in the coming years.
Mr. PORTER. We give most of the credit to Mr. Obey, but we work together on it.
Mr. AMBACH. Well, it's a bipartisan effort, I know that, and that's what carried it through into realization.
Incidentally, we are working with the states to put that in place. It goes off on the first of July and we're very optimistic that it will be effective.
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I'm very mindful of your admonitions about time, and also about the amounts of money or percent increases that we're requesting, all of us here today. The economy is strong. We hope it will stay strong. It is strong because of American enterprise and it's strong because we have the most productive work force in the world.
The educational system underpins that work force. So I am urging here your consideration of two aspects of education funding. The total education budget of course is very large. I can't cover it in a few moments. I want to select two parts of that.
The first is the innovation part of it, your new comprehensive school reform effort is a piece of that. Goals 2000 is a piece of that. Title VI is, the technology funds, the Eisenhower program. All of these together constitute the most important aspect of the Federal investment in changing the education system.
They total about $1.8 billion. Sounds like a lot of money. In terms of the $280 billion expenditure in this country, that's less than 1 percent. The President would move it up by around $300 million in this year. Frankly, we urge that you increase it a bit more.
We ought to be having about a 1 percent Federal R&D investment. And I think you could move to that in about two stages. That would be a half a billion or $500 million per year.
These programs work. We have provided you a copy of reports State by State. I know it's too long for submission into the record, but I can show you in that report in Illinois or in Texas or wherever it may be across the country, that the impact of these innovative Federal efforts is in fact working.
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We have a substantial increase in mathematics scores in this country. All over the country, since 1990. It's because of systematic efforts, and these programs have helped.
I want to speak to one other general aspect of aid, and that is the equity or access mission of the Federal Government, going back to the Title I program in the mid-1960s, with the IDEA program in the mid-1970s, certain aspects of the Perkins money. All of these efforts are designed to reach out to the students who have the least likelihood of success in their educational program.
Right now, we're serving only 60 percent of those children eligible under Title I. You recall that on the IDEA program, the initial intention was that the Federal Government would pick up about 40 percent of the cost. It's still stuck at around 10 percent of the cost. It's a big, big load.
But what is so important about access is that if we are indeed to have a population where all of our residents in fact have the skills for citizenship, develop their intellect, their creativity, as you just referred to, Mr. Chairman, not only have capability in the work force, but have capability for their families and for citizenship as a whole, we have to have virtually all students graduating from high school from here on out into this next century.
We're at about 85 percent at this point. The last 15 percent are the most costly, because they include those who are least likely to succeed.
With respect to these general programs, it is our urging that you be thinking about an increase at this point of something on the order of 15 percent in these programs. Again, it's a tall order. But if we're going to reach a virtual 100 percent, we have to move that direction.
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Keep in mind that there will be 6 million more students in our country in 2005 than there are today. We're going up fairly close to a million a year on top of the issue of serving those who are not served right now.
Thank you for the opportunity to speak.
[The prepared statement of Gordon M. Ambach follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Ambach, thank you.
I have to say about IDEA that we have done, I think, a very good job of moving up our commitment in that area over the last two years.
Mr. AMBACH. You certainly have.
Mr. PORTER. Why we are stuck on 10 percent is not quite accurate, we moved up to 10 percent I think, with $2 billion in new funding in that area over the last two years.
Mr. AMBACH. You're correct.
Mr. PORTER. But clearly, we want to try to do our best in that area to move that number closer to what was promised originally.
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Let me ask a question, though, about comprehensive school reform. Because you're the first witness that has testified regarding that newly funded program. If we can't get additional dollars, additional new dollars for this program, is it your judgment that it is worthwhile to move existing Title I funding into this area?
In other words, take it away from the Title I and move it into comprehensive school reform? Obviously it's not going to be a lot of money, but it's going to be some money.
Mr. AMBACH. Mr. Chairman, I don't think you need to do that. The genius of the comprehensive school reform program is that coupled with Title I, it's leverage money. The money that's in the comprehensive school reform is intended to help, school by school, change the use of the resources that the school already has.
Now, you don't want to take away from Title I to make the change and then have to restore Title I to pick up the service.
Mr. PORTER. Well, you don't want to, but what I'm saying is that we cannot serve anywhere near the demand that there is for comprehensive school reform funds, and if we can't get them from another source, is this a source that makes sense?
Mr. AMBACH. Well, I would urge that you not do it in this next year. I would urge that you get the start on this program and see what type of a multiple effect that you have. If it's really working as effectively as we all hope, then the possibility of some transfer over or use of some potential growth. The President comes in with what, $400 million new in Title I. The use of a potential part of that growth in leveraging the funds, it seems to me, would probably make some sense.
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I would urge that right now, we ought to have at least a year under our belts to see how effectively it's going to go. I'm very, very positive on this, and I can tell you that across the country, the States are as well.
Mr. PORTER. Thank you, Mr. Ambach, for your testimony. We very much appreciate it.
Tuesday, February 3, 1998.
WITNESS
NATHANIAL H. MURDOCK, M.D., NATIONAL MEDICAL ASSOCIATION
Mr. PORTER. Nathan H. Murdock, M.D., President, National Medical Association, testifying in behalf of the Association.
Dr. Murdock.
Dr. MURDOCK. Mr. Chairman and members of the subcommittee, thank you for the opportunity to present the views of the National Medical Association. I am honored to be the President of the National Medical Association. I am a practicing obstetrician-gynecologist in St. Louis.
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Established in 1895, the National Medical Association is the largest organization representing African-American physicians. For biomedical research at the NIH, we recommend a 15 percent increase over fiscal year 1998.
The long term prospects for improving health disparities that exist among minorities in this country hinge on a strong Federal commitment to biomedical research. Yet, in order to fully realize the benefits of scientific investigation, much more needs to be done by NIH and policy makers to ensure that those who are suffering disproportionately are able to share in these advances.
We believe that if increased funding is made available to NIH, this subcommittee and the NIH leadership should target additional funding for those programs focusing upon improving minority health. At a minimum, these programs should receive a proportionate increase in funding to that of the NIH overall.
Now that there is a greater recognition of improving minority health status as a national priority, we are asking this subcommittee to make a special commitment to minority health research. Specifically, we are recommending the establishment of a $1 billion research endowment program geared toward individuals and institutions with a commitment to solving the health problems of the minority communities.
For HRSA, the NMA recommendation is $306 million. Clearly, every responsible study ever conducted demonstrates that African-American physicians and other minorities are more likely to serve in medically underserved areas than their non-minority counterparts. Even though African-Americans represent approximately 12 percent of the U.S. population, only 2 to 3 percent of medical professionals in this country are African-American physicians and other health professionals.
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If it is a national priority to narrow the health status gap that exists among minorities and non-minority populations, then it is imperative that we increase the number of minorities serving in health professions by supporting the health profession training programs.
For CDC, the recommendation is $2.8 billion. Health status challenges that exist in this country are magnified in underserved minority communities. The community based public health prevention activities supported by CDC represents the best Federal opportunities to begin solving these problems.
CDC has initiated several outreach programs targeted at reducing youth violence among minority populations and increasing infant immunization rates among African-Americans and other minority children. CDC is also working closely with the National Medical Association to initiate programs aimed at reducing tobacco consumption among minority populations.
The National Medical Association views the Healthy People 2000 initiative as one of great importance which, if appropriately applied, shows great promise to eliminate a variety of status disparities that exist among the Nation's citizens. We are concerned, however, that the approximately 300 objectives outlined in the initiative, the health status targets for African-Americans, are different, are lower than those for the general population.
We believe that the health status targets should be the same for all Americans. And that if the Nation can move toward achieving this goal, then it would seem natural for this subcommittee to provide the resources and program recommendations that we have outlined in this testimony.
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Mr. Chairman, thank you for this subcommittee's support and the opportunity to present these views. Even though Congressman Stokes is not in the room at this time, I would be remiss if I did not applaud his leadership and dedication to improving the health status of minorities.
Also, Congressman Bonilla, we salute your leadership in the health professions training programs.
Thank you, Mr. Chairman.
[The prepared statement of Nathanial Murdock, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Both of those salutes are well earned. I might say that Lou Stokes has been a consistent and very strong advocate as you know for minority programs, and Mr. Bonilla, for the health professions. I've been dismayed to hear of Lou's intended retirement from Congress, because he's been so strong and such a strong member of this subcommittee. We're going to get the benefit of his service for the next year or so, but we're certainly going to miss him after that.
Dr. MURDOCK. Absolutely.
Mr. PORTER. You mentioned a $1 billion program directed at minority health. My memory may be in error on this, but do I remember the President mentioning such a program in his State of the Union or not?
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Dr. MURDOCK. I don't remember, sir.
Mr. PORTER. Is this a program that the National Medical Association has conceived and promoted?
Dr. MURDOCK. I believe that's true.
Mr. PORTER. I think it's subject to authorization, which means the committees would have to provide us law by which we can fund such a program. But in any case, we certainly will take your strong advocacy to heart in regards to minority health, and you can be assured that Mr. Stokes and Mr. Bonilla will be here to keep us on the right track.
Dr. MURDOCK. Thank you very much.
Mr. PORTER. Dr. Murdock, we appreciate your testimony.
Tuesday, February 3, 1998.
WITNESS
MARGE DRUGAY, THE AMERICAN NURSES ASSOCIATION
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Mr. PORTER. Marge Drugay, N.D., R.N., C., Consultant on Healthy Aging, The American Nurses Association, testifying in behalf of the Association.
I have to say, Dr. Drugay, I don't think I've ever seen the single letter C after a person's name. Have I missed something?
Ms. DRUGAY. It indicates certification in a specialty.
Mr. PORTER. Okay. I've learned something right there. Please proceed.
Ms. DRUGAY. Mr. Chairman and members of this distinguished subcommittee, may I be the first to wish you a good afternoon.
At the outset, I would like to thank and commend Congressman Porter and his staff for the fine work done on behalf of your constituents. As a past resident of the Tenth District for 27 years, I have had several occasions to contact your office on issues of concern both to myself and to the nursing profession. I have always received prompt and courteous attention, and I thank you for that.
I am a doctorally prepared clinical nurse specialist in private practice, serving as a consultant on issues of healthy aging. Today, however, I appear on behalf of the American Nurses Association and its 53 constituent State and territorial nurses associations.
In my written testimony, I have addressed a number of programs that are important to both health care consumers and nurses, including programs related to work force health and safety. As an advocate for the economic and general welfare of registered nurses, ANA also recommends appropriate funding for the Department of Labor and related agencies that serve to ensure a safe and fair work place.
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Today, however, I will focus my remarks on funding for nursing education and nursing research. ANA applauds the work of this subcommittee in recognizing the Nation's largest health care profession, and our importance in the delivery of health care. Ensuring that an adequate supply of well educated nurses is available reaffirms the need for continued funding in fiscal year 1999.
My specialty is gerontology. We are poised on the edge of a demographic explosion in aging. The current population of adults over the age of 65 is approximately 55 million people. By 2020, one in six Americans will be over 65. We are not prepared with enough qualified providers to meet the demands of this population, especially the fastest growing subset who are 85 years of age. Centenarians, those over 100 years of age, are now a commonplace entity.
As health care delivery continues to shift to non-hospital settings, the need for highly educated, scientifically prepared registered nurses will increase. Baccalaureate and higher degrees in nursing will be crucial in providing front line care, education and preventive services in the 21st century.
Doctorally prepared nurses are required to conduct nursing research and for faculty positions to prepare our future nurses. To complicate matters further, an aging R.N. work force will also fuel the increased demand for R.N.s. According to the division of nursing, in 1996, the average age of nurses was 44, and only 9 percent of the Nation's two and a half million registered nurses were under the age of 30.
Data from the U.S. Bureau of Labor Statistics shows employment of R.N.s will increase faster than the average for all occupations through 2006. The recent trend to reduce R.N. staffs and increase the use of unlicensed assistive personnel has proved unsatisfactory, producing poor outcomes and prompting more hospitals to boost R.N. recruitment.
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Federal support for nursing education in Title VIII is essential. This is the only Federal money earmarked for nursing education. Funding supports curriculum development and other programs to expand the focus of nursing education to non-hospital settings and greater health promotion efforts. Funding also supports greater numbers of minority nurses who provide culturally competent, linguistically appropriate health care services to underserved populations.
Today, we are requesting fiscal year 1999 funding of $70.8 million for the programs funded under the Nurse Education Act. This is an 8 percent increase over current funding.
Our second priority is funding for the National Institute of Nursing Research at NIH. Again, we applaud this subcommittee's commitment to advancing behavioral science research. Nursing research is an integral part of nursing care, as indicated by Dr. Hinshaw. And it has shown that health promotion is effective.
In Illinois, we developed a successful wellness model geriatric outreach program, based on the HHS initiatives, Healthy People 2000, and put prevention into practice. We support the Administration's proposed funding level of $68.3 million for this program, and would recommend funding of 15 percent over the fiscal year 1998 level of $63.5 million, bearing in mind the Chair's comments.
We appreciate the opportunity to comment on funding for nursing education and nursing research programs. We thank you for your continued support, with a special thanks to Congressman Bonilla, and look forward to working together as you go through the appropriations process.
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Thank you.
[The prepared statement of Marge Drugay follows:]
Offset 2159 to 2168 Insert here
Mr. PORTER. Dr. Drugay, did you say you were a former Tenth District resident?
Ms. DRUGAY. Yes.
Mr. PORTER. Where have you gone?
Ms. DRUGAY. I am currently a Fifth District resident in Arizona.
Mr. PORTER. Arizona?
Ms. DRUGAY. Yes, Tucson.
Mr. PORTER. You left our wonderful State of Illinois?
Ms. DRUGAY. My husband retired, I had to go along with him.
Mr. PORTER. Well, we'll forgive you in that case. Thank you very much for your good testimony, and we'll do the best that we can to meet the needs.
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Tuesday, February 3, 1998.
WITNESS
DOUGLAS SCHACKE, NATIONAL ASSOCIATION OF INDEPENDENT COLLEGES AND UNIVERSITIES
Mr. PORTER. Douglas Schacke, Dean of Admissions and Financial Aid, Barat College, Lake Forest, Illinois, testifying on behalf of the National Association of Independent Colleges and Universities.
Dean Schacke, you are, I hope, a constituent of mine. I have an honorary degree from your institution, as you are probably aware, and I will listen very intently to what you have to say.
Mr. SCHACKE. Great, thank you.
I, too, Mr. Porter, would like to thank you for all the support that both you and your staff have offered to us at Barat over the years.
My name is Doug Schacke, I'm Dean of Admissions and Financial Aid at Barat College in Lake Forest, Illinois. Thank you for this opportunity today to speak with you on behalf of the important issue of funding student aid.
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According to the 1990 census, 13.7 percent of the population of this country had at least a bachelor's degree. That's 13.7 percent of the population. I don't know about you, but most of my professional and personal circles that I travel in, it's easy to take higher education for granted. Most of the people that I come into contact with have at least a bachelor's degree, if not a masters or a Ph.D.
Less than 14 percent of this population in 1990 had a bachelor's degree. I find this figure astonishing.
You probably have heard the phrase, knowledge equals power. In many ways, this phrase is very true. Higher education is key to keeping our Nation prosperous and successful. I am here today to talk about the importance of federally funded programs for higher education.
I've been involved in student aid for seven years. Barat College is a strong liberal arts college serving 800 students, mostly from the surrounding communities. Barat has a strong tradition of educating students who come from diverse backgrounds and experiences.
Over 20 percent of our students are from minority populations. In addition, 38 percent of the student body is over the age of 25. Most of these individuals have been in the work force for some time and realized that college education is a necessary tool for moving ahead in their professions.
With this in mind, our curricula is designed to provide both theoretical knowledge and practical experience. Our tuition is at about the national average for private colleges, $12,570. I'm testifying today on behalf of NAICU, the National Association of Independent Colleges and Universities. This organization represents a broad array of over 900 of the Nation's private, non-profit colleges and universities.
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First, I would like to thank you for the strong support you have shown for student aid in higher education. In particular, I would like to highlight the increase you provided last year for the Supplemental Educational Opportunity Grant program and the increase in the Pell maximum. This increase in SEOG was the first in five years, and the increase in the Pell grant was the largest in nearly two decades.
The current student aid programs play a critical role in our Nation's ability to educate its citizens. These programs are often referred to as patchwork, but I can tell you from first-hand experience that they work together to provide assistance to many students.
For example, without a combination of Federal, State and institutional aid, a student like Roberto Silva would not be able to achieve his dream of becoming a high school teacher. Growing up in Chicago and attending public schools, Roberto has experienced first-hand the importance of education and the challenges that inner city students face.
Because of this, Roberto has dedicated himself to becoming a high school social studies teacher. Not only does he desire a career in teaching, he is passionate about serving as a role model for disadvantaged urban youth. His goal is to show young people that they have options and how to plan for their futures.
However, coming from a single parent household with no income to support his quest for higher education, Roberto knows that financing would determine whether or not his dream would become a reality. Without a combination of the maximum Pell Grant, SEOG, Federal work study, or Perkins loan, a state grant and additional assistance from the college, he would not be a junior in college today, preparing to student teach next year. If even one form of these aids were reduced or eliminated, his ability to continue in college would be in serious jeopardy.
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Another student I want to tell you quickly about is named Shane Abbott. Shane came to Barat from Texas. When he was a senior in a public high school in Dallas, Texas, he was deciding where to go. He found out about us because we had two programs that were of strong interest to him. We have a strong theater major, which is his intended field of pursuit. We also have a strong program for college capable students who have learning disabilities.
Because he came from a disadvantaged high school setting, he wasn't diagnosed with learning disability until the end of his junior year. Our program seemed like it was the perfect fit for him. However, when he filled out his FSFA, he realized that his estimated family contribution was zero. Meaning that they had no funds to fund his quest for higher education.
Now, the difference between Shane and the previous student that I mentioned, Roberto, is that Shane didn't come to Barat from the State of Illinois. Therefore, he wasn't eligible for the generous state grant program of at least $4,000. We had to work with Shane very closely to see what we could do as an institution to help support his quest for higher education.
Well, it worked out that Shane wasn't able to come to us right away. Shane took two years off, worked in a factory, saved some money and was able to start Barat last year. He current is a sophomore.
Instead of going through each of the different grant programs and loan programs, I want to highlight one specific one, and that's the Federal work study program. I urge you to provide $900 million as requested by the President. Work study is a cornerstone self-help student aid program. Students are able to earn funds to help pay their way through college.
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This investment in student aid is an investment in our Nation's future. Our preparation for the 21st century hinges upon our attention to educating our citizens.
I thank you, and I welcome any questions.
[The prepared statement of Douglas Schacke follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dean Schacke, can I go back to your 13.9 percent figure for bachelor's degrees? That's——
Mr. SCHACKE. Yes, 13.7.
Mr. PORTER. That's 13.7 percent of the whole population?
Mr. SCHACKE. No, that's 13.7 percent of the population that would be of the age to at least have a bachelor's degree. That's over 21.
Mr. PORTER. That does seem unusually low, and includes obviously all advanced degrees beyond that?
Mr. SCHACKE. Exactly.
Mr. PORTER. The President initially considered zeroing out the Perkins capital contribution to fund an increase in SEOGs to $679 million. In the end, the President put $60 million into a Perkins increase and reduced SEOGs to $619 million. If you had to make that decisions, which would you put at the higher priority?
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Mr. SCHACKE. I would put the SEOG at the higher priority.
Mr. PORTER. You would?
Mr. SCHACKE. Yes.
Mr. PORTER. Why?
Mr. SCHACKE. I've found that with most of our students, the SEOG is much more critical in supplementing their aid package than the Perkins loan is. It has, the combination of all together, SEOG stands out as more critical in the whole package.
Mr. PORTER. Is Barat under the direct loan program?
Mr. SCHACKE. Yes, we are.
Mr. PORTER. And you're finding that satisfactory?
Mr. SCHACKE. Yes, it has certainly some challenges administering it on our side, but it has certainly increased the time in which students receive the funding. So we have, the students have definitely seen a benefit from that.
Mr. PORTER. Dean Schacke, thank you for coming to testify. We very much appreciate it.
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Mr. SCHACKE. Thank you.
Tuesday, February 3, 1998.
WITNESS
EUGENE LEHRMANN, AMERICAN ASSOCIATION OF RETIRED PERSONS
Mr. PORTER. Eugene Lehrmann, Immediate Past President, American Association of Retired Persons, testifying in behalf of the Association.
Mr. Lehrmann.
Mr. LEHRMANN. Good afternoon, Mr. Chairman. I'm Gene Lehrmann, the Immediate Past President of the American Association of Retired Persons, from Madison, Wisconsin. Thank you for this opportunity to comment on various programs which benefit older Americans, especially low income and minority elderly.
Of particular significance in this regard, the Older Americans Act and Low Income Home Energy Assistance Program, better known as LIHEAP, these initiatives play key roles in helping needy Americans preserve their dignity and independence. Since its enactment over 30 years ago, the Older Americans Act has enabled millions of older citizens, especially those with disabilities, to remain independent and productive.
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Many of these individuals would have ended up in expensive institutional settings were it not for the home and community based services provided by this landmark legislation. At a minimum, the Association recommends for an inflation adjustment next year for OAA programs. We applaud Congress for providing increases this year in many of the programs.
Among other things, the extra funds mean nutritional meals for more seniors, particularly those who are isolated and frail. The home delivered meals program is very often the only human contact some of these persons have in a given day. And their lives are enriched by these visits in ways which cannot always be measured.
The increase in funds this year will also provide additional supportive services. These include transportation for doctor and pharmacy visits, homemaker assistance and legal counseling. A critical part of the Older Americans Act is the Senior Community Service Employment Program, known as SCSEP.
As one of the national sponsors of this activity, the Association has first-hand knowledge regarding its effectiveness. SCSEP has made a real difference in the lives of many unemployed, low income older Americans by providing part time jobs which are useful in community service. Many of the nutrition programs and other services for seniors, as well as important programs serving the broader community, such as library services and day care centers, are dependent on work provided by persons through SCSEP.
Compared with younger workers, once unemployed, older workers tend to be jobless longer and are likely to earn less when and if they are hired.
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With regard to the Low Income Home Energy Assistance Program, Mr. Chairman, at a minimum the Association strongly urges at least $1.2 billion in regular funds next year, an amount equal to the total spending level in fiscal year 1997. Because this program is advance funded, Congress provided $1.1 billion for fiscal year 1999 in the fiscal year 1998 appropriation. We are recommending an increase of $115 million over that level for the coming fiscal year.
We also recommend the same amount for the fiscal year 2000 advance appropriation. LIHEAP is important to all of its beneficiaries. But none more so than the low income older person, housing, health care and energy.
I want to thank you for this opportunity to present our views regarding appropriations next year for programs which benefit older Americans.
[The prepared statement of Gene Lehrmann follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mr. Lehrmann, thank you for your testimony. Just out of curiosity, what did you do before you became President of AARP?
Mr. LEHRMANN. I was an educator in Wisconsin. When I retired I was the State Director of Vocational Education.
Mr. PORTER. So you're originally from Madison? You spent a good deal of your adult life there?
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Mr. LEHRMANN. Yes. I spent, actually now, it's 30 years of my life in Madison. Other than that, I was in Kenosha, Wisconsin for nine years. And I taught in Wassau, Wisconsin, for 11 years.
Mr. PORTER. Kenosha's not far from my district. I go right up to the Wisconsin line.
Mr. LEHRMANN. I noticed that, sir.
Mr. PORTER. Madison is certainly a wonderful town to live in.
Mr. LEHRMANN. It is, it's a lovely city.
Mr. PORTER. Regarding LIHEAP, you're probably aware that I have a great problem with the program. Because I think while it meets a need, the need is one related to poverty more than it is to energy costs. Because energy costs have gone way down since the program was enacted. And the rationale for the program has, in my judgment, completely disappeared.
The need is still there, however, and you've got people who need the help. I wish they would restructure the program in such a way that it is aimed at the right target, and not hang it on the I think hook of energy prices, which are no longer the serious problem they were at the time of the Arab oil embargo.
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Otherwise, I think it's obviously a place for people who need help.
Mr. LEHRMANN. No question, Congressman. It follows low income, it follows poverty. And you know as I do, living in the northern part of the country, 20 degrees below zero at night takes a lot of energy. But your point is well taken. I think funding sometimes directs how programs develop and this may have been the case.
Mr. PORTER. To me, it's an evidence of the Federal Government's inability to change and eliminate and restructure programs whose rationale has long since disappeared. I think it kind of undermines the support for the need that I readily admit is very much there.
Obviously the mechanism of providing help by paying on energy costs is probably a very good one. It's simply, the rationale's not an accurate one.
Mr. Lehrmann, thank you very much for coming to testify. We very much appreciate it.
Mr. LEHRMANN. Thank you very much, Congressman. My pleasure to be here.
Tuesday, February 3, 1998.
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WITNESS
JAVIER SALAZAR, THE ADAP WORKING GROUP
Mr. PORTER. Javier Salazar, member of the ADAP Working Group, testifying in behalf of the Working Group.
Mr. Salazar.
Mr. SALAZAR. Good afternoon. My name is Javier Salazar and I'm testifying on behalf of the Aids Drug Assistance Program Working Group, where I'm an active participant representing AIDS Action Council here in Washington.
I'd like to start by thanking you, Mr. Chairman, and the rest of the committee, for the extraordinary leadership that you've shown in support of all AIDS programs, as well as the AIDS drug assistance program. I also want to thank you on behalf of the tens of thousands of people living with HIV and AIDS nationwide, their families and their friends.
The work of this committee has played a tremendous role in the realization of the incredible news that we hear daily about the strides that we as a Nation are making in the fight against HIV disease. You've seen the headlines, the statistics about the dramatic drops in AIDS deaths and about the potential of the new, powerful therapies.
Just today, today's Washington Post reports a stunning 44 percent in AIDS deaths in the first half of last year.
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But I want to tell you about the fantastic news that these new therapies have brought in my life, and how fortunate I was not only to have had access to them, but to when and how I was able to take them. Originally from San Antonio, I'm the son of proud Mexican immigrants. I came to Washington after graduating from the University of Notre Dame.
Once here, I had the privilege of working for Senators Lloyd Bentsen and Kruger from my home State of Texas. I was the young, ambitious face that so characterizes Capitol Hill. I was that face that you see in your office and in the hallways.
When things could not have been better, I tested positive for HIV. I was 24 then. My T-cell count was 349, and I thought that all hope was lost. But I had other things to worry about. Not only was I faced with the tragedy of my own infection, but with the tragedy that my partner, Ron Mallon, whom I loved dearly, was dying of AIDS.
At a time when I should have been worrying about furthering my career, achieving my goals, I was saying goodbye to Ron in a hospital here in Georgetown. Most would accept that the death of a partner is something that people deal with later in life. I was not that lucky. Ron died on August 8th, 1995, a week after my 27th birthday. My T-cell level had now fallen to 210, just 10 above an AIDS diagnosis.
A month after, I learned about combination therapy with protease inhibitors. I joined a clinical trial and began to take the potent combination of potent antivirals, including a protease inhibitor. I've been on the very same combination for over two years. My viral load, the measure of active virus in my bloodstream, has been undetectable for over two years. My T-cells have tripled, and at last count, they were well over 700. I'm 29 now.
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What is so exceptional about that? Well, once I thought that I would surely develop AIDS soon and not even live to see the age of 40, or even 35. Life seems more hopeful now. Why? Because I got the drugs, the medical care, services and the support that is essential to taking these drugs successfully.
Even more, I started taking these drugs in combination. I had never put an anti-HIV drug in my body. I was what is referred to now as treatment naive. I took a combination of drugs from the very beginning, and my viral load was suppressed below detection.
This strategy is now the driving force behind the recently compiled NIH–PHS guidelines for the treatment of HIV disease. My friends have started calling me the living guidelines made real, real hope. But along with this bittersweet pill, I can't help to think if only, if only my partner would have had the chance that I got. Maybe he could be alive today. If only more people could get the drugs and the care that they need, they could share in the hope that I am so fortunate to have today.
That's where the work of this committee is so important. Every person must have the opportunity to access these helpful therapies early and in accordance with the new treatment guidelines. It's critical that individuals have access to the entire arsenal of drugs and not have to suffer from the disastrous implications that may occur as a result of only having access to substandard anti-viral therapy and care.
This committee has shown great commitment to the needs of people living with AIDS. I ask you to continue and strengthen your commitment by increasing funding for ADAP and to providing the necessary resources to provide the medical and enabling services critical to the success of drug therapy.
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Thank you for this opportunity, and thanks for letting me share my story. There's a written statement for the record.
[The prepared statement of Javier Salazar follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Thank you, Mr. Salazar. Could I ask a question? Is there side effects to these drugs?
Mr. SALAZAR. Yes. I myself have experienced two bouts of kidney stones. I don't know if you have ever had a kidney stone.
Mr. PORTER. Very painful, I understand.
Mr. SALAZAR. So yes, I've had those side effects. I have general kind of fatigue. I felt better when I wasn't on them, to be honest with you, physically. But yes, a great deal of side effects.
Mr. PORTER. Well, we realize how expensive they are and how we need to provide them to people who are at obviously serious risk. We're very encouraged that the President has placed this this year at a very high priority in his budget, which gives us a lot of support for providing those kinds of resources.
Mr. SALAZAR. You've led the way.
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Mr. PORTER. So I think we're all on the right track now, and we appreciate your testimony and we'll do our best to continue providing support for the ADAP program.
Mr. SALAZAR. Thank you.
Mr. PORTER. Thank you.
Tuesday, February 3, 1998.
WITNESS
ARTHUR L. DAY, M.D., AMERICAN ASSOCIATION OF NEUROLOGICAL SURGEONS AND THE CONGRESS OF NEUROLOGICAL SURGEONS
Mr. PORTER. Arthur L. Day, M.D., James and Newton Eblen Eminent Scholar and Professor of Neurosurgery at the University of Florida, testifying in behalf of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons.
Dr. DAY. Thank you, Mr. Chairman. I am, as you mentioned, a professor of neurological surgery at the University of Florida. I appear here today on behalf of the American Association of Neurological Surgeons, the AANS, and the Congress of Neurological Surgeons, the CNS.
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We wish to thank you for the opportunity to comment on the fiscal year 1999 neuroscience agenda. Spinal disorders, vascular diseases of the brain and genetic disorders represent the three most common afflictions to the central nervous system. With these conditions in mind, we urge the subcommittee to direct its funding to five areas of research for the upcoming year.
The first is head and spinal cord injury. Trauma to the brain and spinal cord is the leading cause of death and disability among children and young adults. The direct and indirect costs of traumatic spinal cord injuries alone are estimated to be over $7 billion annually.
New drugs can reduce the amount of the brain and spinal cord damage produced by these injuries. Functional recovery can also be enhanced by prompt therapeutic interventions.
Ultimately, the ability to restore function of injured brain or spinal cord is the key to all types of central nervous system diseases. We believe that the basic research targeted at this goal should be a major priority for the following year.
Number two, stroke. Stroke is the third leading cause of death in the United States. It's also the leading cause of long term disability. Every year, 500,000 new cases are diagnosed in our country at an estimated cost of $30 billion.
Aggressive medical treatments before or early after the onset of stroke symptoms can now significantly improve outcomes. Recently, the concept of brain attack, similar to the implications of a heart attack, has gained the support of many neurologists and neurosurgeons across this country. The major thrust of brain attack programs is an early diagnosis, a rapid restoration of blood flow to areas of the brain lacking circulation, and pharmacological protection of brain cells from irreversible damage.
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These therapeutic actions must be carried out rapidly within a window of opportunity before irreversible brain damage occurs. We are convinced that your continued support for these programs will lead to a substantial life saving and function saving progress in this area.
Number three, molecular treatment of brain tumors and other disorders of the nervous system. Brain tumors represent the third leading cause of cancer deaths in middle aged males. Tumors of the nervous system are the second leading cause of cancer deaths among children.
Every year, more than 10 percent of the 400,000 new cancer patients in this country see their disease spread to the brain or spinal cord. In many such patients, the nervous system tumor constitutes the single most immediate threat to their life and function.
The application of molecular biology and its techniques to the central nervous system have revolutionized our understanding of how brain tumors grow and spread. Therapeutic drugs and genetic material can now be directly injected into specific regions of the brain to kill tumor cells, while other parts of the brain and body are shielded from injury.
Disorders such as Parkinson's disease, Tay-Sachs, Huntington's disease and Alzheimer's dementia can be similarly treated with such magic bullets, and can reduce the $100 billion annual cost of these diseases. Your continued support can help identify the full range of genetic abnormalities that underlie these crippling nervous system disorders.
Number four, research into spinal disorders. Disorders of the spinal cord, the spinal nerve roots and the bony spine are common causes of pain and disability in our country. Each year, 15 to 20 percent of the population will have an episode of back pain. And during their lifetime, about 70 percent of U.S. citizens have an episode of serious back or leg pain caused by diseases of the spine.
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Currently, back and leg pain are the second most common reason for physician visits in this country. Recent progress in basic neuroscience research has markedly enhanced our understanding of basic pain mechanisms and how the spinal cord controls movement and integrates sensation. Further research that identifies these mechanisms that cause pain and loss of function whenever the spinal cord or nerve roots are injured can help allow the identification of more effective methodology and less invasive treatments in the relief of such symptoms.
It is also clear that some patients with serious spinal disorders can only be helped with surgery. Clinical and outcome research in this area could help physicians to more expeditiously evaluate patients with spinal disease and then more appropriately select patients for operative treatment, thus limiting the patient's time of anguish before definitive therapy is performed.
Number five, and finally, outcomes research. Technology is now driving the contemporary treatment of neurologic disorders at an unprecedented degree. The cost of these new technologies can be easily justified if the benefits of decreased suffering and additional years of useful survival outweigh the amortized costs of such treatments.
Outcomes research can do much to guide patients, physicians and policy makers in therapeutic decision making and resource allocation. We urge you to provide funds to the Agency of Health Care Policy and Research to improve the methodology for outcomes research in neurological disorders, and to support pilot studies in the treatment of stroke, brain tumors and degenerative spine disorders.
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Mr. Chairman, as we approach the final year of the decade of the brain, and now the new millennium, the AANS and the CNS hope that the Congress will continue its commitment to biological research for nervous system disorders. These funding priorities are costly but can have a major impact on the quality of life for our citizens.
Thank you for your considerations.
[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 statement of Arthur L. Day, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Day, thank you for your testimony.
I have to say that number four had a particular resonance with me, as a year ago, sitting in this chair, I had the most horrific back pain that went on for more than four months. I guess I fall in that 80 percent category of having experienced it.
All of these are very important areas for us to focus our attention on, and I can assure you we're going to do our very best to provide the resources that are needed.
Dr. DAY. Thank you.
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Mr. PORTER. Thank you for coming to testify.
That concludes our witness list for this morning's session. We stand in recess until 2:00 p.m.
Afternoon Session
Mr. PORTER. The subcommittee will come to order.
We continue, this is our sixth session with public witnesses, and we now have had the benefit of the testimony of 100 witnesses. And we have about 100 to go. What we're attempting to do, obviously, is to start early in the session in order to avoid interruptions from recorded votes. We will be able to do that today and hopefully not have too many on Wednesday and Thursday.
Our attempt, obviously, is to allow as many public witnesses to testify as possible. We are oversubscribed, but we're doing our best to accommodate as many as we possibly can. We would appreciate all witnesses observing the time limits that allow additional numbers to testify.
Tuesday, February 3, 1998.
WITNESSES
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KATHY HUNTER, INTERNATIONAL RETT SYNDROME ASSOCIATION
DEAN HUNTER (SON)
Mr. PORTER. Our first witness is Kathy Hunter, the Founder and President of International Rett Syndrome Association, accompanied by Dean Hunter, her son, testifying in behalf of the Association.
Mr. Hoyer.
Mr. HOYER. If I might, I want to welcome Kathy Hunter. As you know, she has testified, Kathy, when's the first time you testified, about eight, nine, ten years ago?
Ms. HUNTER. About 1986.
Mr. HOYER. So 11 years ago, 12 years ago. And she has done an extraordinary job. Rett Syndrome, as I'm sure some of you know, is a neurological disease that impacts after about 12 to 18 months of development, so that the child, it's almost exclusively female children. Do we have any male children that we've identified? Two. But exclusively female children that are impacted.
The way I got involved in this, I go to church with a Rett Syndrome child, Christy Smith, who is now I guess 25 years of age. So I've known her since she was I guess 8 or 9. She's an extraordinarily warm and loving individual. She is now partially institutionalized and partially at home with the Smiths.
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Stacy, who is your sister, is an extraordinary young woman herself, and has been here. I see Stacy's not here this year. You mentioned this morning somebody who had a son and the courage they show and the commitment they show and the difference they make. Kathy Hunter is one of those people, Mr. Chairman.
Mr. PORTER. We all agree with that. Thank you, Mr. Hoyer.
Mr. Dickey.
Mr. DICKEY. Mr. Chairman, I'd like to state for this side of the aisle that we're very pleased that you go to church, Mr. Hoyer. [Laughter.]
Mr. HOYER. I want to state from this side of the aisle, when I do, I pray for the other side of the aisle. [Laughter.]
Mr. PORTER. Especially for Arkansas.
Ms. Hunter, we're not charging your time against those comments.
Ms. HUNTER. Thank you, Mr. Chairman, Mr. Hoyer and distinguished members of this committee. It is my greatest honor to appear before you once again as Founder and President of the International Rett Syndrome Association.
I speak on behalf of thousands of girls and their families whose lives have been changed forever by Rett Syndrome. I must admit that I wish this committee had compelling magic powers and could make even the bravest dreams come true. If that were so, I would rejoice to never have to come before you again.
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As Helen Keller once said, although the world is full of suffering, it is full also of the overcoming of it. We applaud your enthusiastic support for the National Institutes of Health and its dedication to the health and welfare of Americans, particularly during these difficult fiscal times. We are most grateful for your past support of research into Rett Syndrome and other neurological disorders, and ask for your vigorous continued support for the national research effort in fiscal year 1999.
Imagine for a moment a wonderful baby girl as pink and round as a cherub and as precious as a porcelain doll. Picture her first steps and delightful babble as she takes in the world around her with wonder and laughing abandon. See her squeal with delight as she plays with her favorite toys. Imagine the hopes and dreams for a fulfilling life that lie ahead.
Then imagine what it must be like to witness her laughter turn suddenly to frightening screams, her babble to deafening silence, her toddling steps to stillness, her recognition and understanding to utter confusion. Think of what it would be like to watch one seizure after another and the development of painful stiffening joints and curvature of the spine. Think of what it must be like to watch her grow, yet never grow up.
Imagine that no one knows how or why it happened, and no one knows how to make her better. Finally, imagine that she is your child. It is happening somewhere in America just as I speak. Families watch in fear and disbelief as their little girl slips away from their reach.
As one mother wrote, the children are a constant reminder that this can happen to anyone. When you see a child with Rett Syndrome, you come face to face with the fact that you can do everything right and still have a child with severe multiple disabilities.
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Another mother writes to express the painful yet valuable growth process it takes to cope and gain perspective. There is added dimension to our character, a sense of strength to adjust and accept, a more tender heart to care deeply and lovingly, to love so unconditionally. Jen was the most beautiful baby I ever saw. I would gaze upon her beauty, relish in the thoughts and dreams of motherhood and life with this beautiful daughter.
Girls with Rett Syndrome cannot talk or use their hands, and many do not walk. They need help for every aspect of daily living, bathing, dressing, feeding, toileting, communicating. Yet they began their lives with great promise.
It is only through recent research that we have come to more clearly understand their true potential. Dr. David Koppenhaver, researcher at Duke University, said that these girls are complicated, but we are convinced that they are teachable. Until now, girls with Rett Syndrome have been classified as severely to profoundly mentally retarded and unteachable, spending their lives trapped in bodies that will not allow them to show us what they understand.
What a revelation to find that with the use of augmentative communication techniques, we can expect them to learn. Hope is alive.
My daughter Stacy, now 23, was the first child diagnosed with Rett Syndrome in the United States in 1984. My son Dean joins me today as a witness to the life story of Rett Syndrome. He was five years old when Stacy was born. He grew up with the many challenges our family faced, but only recognized the full depth of our anguish when he recently became a father himself.
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We are fortunate that the most striking feature his beautiful son inherited are his deep blue eyes. But with each new child begin in our family, we must begin a tormenting cycle of worry again, wondering whether the second year of life will bring joy or tragedy.
One of the greatest barriers to genetic studies has been a relatively small number of families with more than one affected child. A recent collection of data on several new families with more than one child and two male children with Rett Syndrome have contributed revealing clues to the mystery. We're very grateful that in June of this last year NICHD sponsored a study group on the genetic basis of Rett Syndrome, at which time a number of innovative research strategies using advanced genetics techniques, were shared.
In response, the International Rett Syndrome Association has made a commitment to fund $94,000 in 1998 to the newly established Rett Syndrome Consortium, and continues to fund seed grants and recruit talented researchers to the field, in addition to identifying new cases and encouraging research participation.
Exciting work includes the development of a mouse model showing definite alterations in receptors in regions of the brain that appear to function abnormally in Rett Syndrome. On the genetic map, we have located the state and city and have narrowed the research to finding the right street.
The study of living brain cells and nasal biopsies has shown that these cells are inactivated, not dying as previously thought. This work may provide a scientific marker or prenatal test for Rett Syndrome.
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Other promising findings may lead not only to the scientific marker but to rational treatment approaches and a potential cure. Autopsy studies have revealed abnormalities in specific areas of the brain which correlate to the clinical problems seen in Rett Syndrome, such as movement, equilibrium, cognition, awareness, behavior, memory and emotion. The heart has been shown to possess an image or conduction system thought to parallel what is seen in the brain and possibly responsible for the sudden, unexpected death in sleep that is seen in Rett Syndrome. That is the largest single cause of death, sudden death in sleep.
These studies lead to the speculation that growth factors, which are responsible for maturation of the heart and central nervous system, are altered, thus leading to the developmental arrest which is seen. We are most grateful to the subcommittee for their earnest consideration of this request for increased funding for all neurological disorders, especially as we come to the close of this decade of the brain.
The intensive search for genes related to developmental delay, mental retardation and growth failure will undoubtedly lead to findings in a number of other disorders which affect many thousands of Americans. As we stand on the threshold of discovery, we urge you to provide funding for studies which may have a high risk for failure, but which at the same time may yield important new information which increases our understanding of Rett Syndrome and other neurological disorders.
We heartily support the recommendations of the Friends of NICHD and the National Committee for NINDS Funding, and look forward to the progress to come that will bring about a better life for our daughters.
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In closing, I want to quote Margaret Mead, who said, never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
Just as our daughters look to us for help, we look to you for hope. Thank you.
[The prepared statement of Kathy Hunter follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Well, Kathy, you're one of those band of dedicated individuals. You've been here and you've never given up for a moment, and you are making a tremendous difference.
We appreciate the leadership and commitment that you've shown, and we're going to do our best to provide the funds so we can get some breakthroughs and prevent this disease from affecting further human beings. Thank you for being here, and thank your son for being here as well.
[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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Tuesday, February 3, 1998.
WITNESS
DORR DEARBORN, M.D., CASE WESTERN RESERVE UNIVERSITY AND RAINBOW BABIES AND CHILDREN'S HOSPITALS OF CLEVELAND
TERRY ALLEN
Mr. PORTER. Dr. Dorr Dearborn, Associate Professor of Pediatrics, Case Western Reserve University, representing the University and the Rainbow Babies and Children's Hospitals of Cleveland.
Mr. Stokes.
Mr. STOKES. Thank you, Mr. Chairman.
Mr. Chairman, it's a pleasure for me to welcome before our subcommittee today Dr. Dorr Dearborn, who as you've stated is Associate Professor of Pediatrics at Case Western University. He today is representing both Case Western Reserve University and Rainbow Babies and Children's Hospitals of Cleveland.
Accompanying him this morning is Mr. Terry Allen, who represents the Cuyahoga County Board of Health. I'd like to extend a warm welcome to both of you. It's a pleasure to have you here.
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Thank you, Mr. Chairman.
Dr. DEARBORN. Mr. Chairman, Congressman Stokes and other members of the subcommittee, I am Dorr Dearborn, a pediatrician at Case Western Reserve University School of Medicine. I specialize in children's lung diseases.
We thank you for allowing us to tell you today about an outbreak of pulmonary hemorrhage that is killing infants in the Cleveland area and around the country. A previously rare disorder, acute pulmonary hemorrhage, has been diagnosed in 38 infants in the Cleveland area in the past 5 years. This serious disorder causes infants to cough up blood and usually requires intensive care measures to save them.
Fourteen of these infants have died, including nine originally thought to be sudden infant death syndrome. Thirty infants were African-American, all of whom lived in a limited geographic area of western metropolitan Cleveland, an area of older housing stock. This area corresponds directly with Congressman Stokes' district.
An investigation of this outbreak led by the CDC has linked this disease to exposure to a toxic mold called Stachybotrys, which was found in the infants' homes. This mold requires water-saturated wood products to grow, and appears to have occurred secondary to chronic basement flooding or from chronic plumbing or maintenance problems. Once the source of water damage is corrected, the mold can sometimes be removed by a bleach solution. However, more extensive abatement is often necessary.
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Stachybotrys, while not a common mold, is know to have a wide distribution. We are aware of a total of 122 cases of acute pulmonary hemorrhage in infants nationwide over the past 5 years. As you can see from the map that we handed out to you, most of your States have had at least one case. Especially in the Chicago area, and also more recently in Milwaukee.
The rapidly growing lungs of young infants appear to be especially vulnerable to the toxins made by this mold. The CDC investigation also found that environmental tobacco smoke was frequently a trigger to precipitate the acute bleeding.
This is an emerging disease. We need to act now to learn how to prevent it and how to treat it. I urge you to provide new supplemental funds to both the CDC and NIH to address this problem.
The CDC needs, in our view, an additional $3 million in order to address several areas. They need to help us in northeastern Ohio, to the Ohio health agencies, who have already started a prevention program. We need to further investigate the Cleveland area to find out why we are having over a third of the cases in our immediate area, and also the other Great Lakes cities where they seem to be clustering.
We need to mount a nationwide study to see if the other infants that are having pulmonary hemorrhage also have toxic mold in their homes. The CDC needs to develop rapid methods to detect and quantify airborne toxic fungi in order for us to better make objective public health decisions, particularly whether it is safe for infants to remain in water damaged homes.
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We urge you to provide to the NIH, specifically to the National Institute of Environmental Health Sciences, an additional $2 million to initiate research on tests to detect direct exposure, recent exposure to the toxic fungi, in order to help us diagnose this disorder more quickly. We need to develop infant animal models as a way to model how these toxins cause the human disease.
We need to find out why these infants continue to have low grade bleeding in their lungs, even though they have been removed from the toxic environment, both the fungus and the smoke environment. We need to determine the relationship of this disorder to the fatal mechanisms that occur in SIDS.
We urge you to help us attack this newly recognized environmental hazard that is killing young infants in our community. These fiscal requests are a crucial initial empowerment.
Thank you.
[The prepared statement of Dorr G. Dearborn, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Dearborn, thank you very much.
I personally was not aware, before your testimony, of this very serious problem. We will do our best to give CDC the resources they need to address it. Thank you for bringing it to our attention.
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Mr. Stokes.
Mr. STOKES. In light of the fact that this new, emerging disease has attracted national attention in the media, I wonder if I could just ask a couple of questions of Dr. Dearborn while he's here. Thank you.
Dr. Dearborn, I'm struck by the fact that you've made reference to the fact that there are 122 of these cases nationwide, and yet a third of the cases are in the Cleveland area, specifically in my Congressional district. Then about half of them are around the Great Lakes.
Do we know why we have that type of a phenomena?
Dr. DEARBORN. No, we have a few speculations, but that's all they are at this point. They need to be investigated, particularly by the CDC, to see if we can find out why there is that clustering. It may have something to do with the older housing, but Cleveland is not the only city with older housing. It may have to do with the sewer system, but again, the sewer system is not necessarily unique to Cleveland. There are several clues we need to follow up.
Mr. STOKES. Is there any relation between this type of disorder and sudden infant death syndrome?
Dr. DEARBORN. There appears to be some overlap, at least in the cases in the area of your district where we had a number of the deaths. Twelve percent of the deaths for a three year period, 12 percent of the SIDS deaths, were actually due to this disorder. This is not going to give us an explanation for the majority of SIDS cases, on the other hand, it will give us insight to a significant proportion of them, and in the process of researching this disease, we've already had some new insights, how to approach some of the questions that are being presented by SIDS.
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So there is a small but meaningful overlap.
Mr. STOKES. My last question, Mr. Chairman.
Dr. Dearborn, as I understand it, of the 38 cases in the Cleveland area, 30 of them were African-American children, is that correct?
Dr. DEARBORN. That is correct.
Mr. STOKES. And is the same true for the balance of the 122 cases? Would the majority of those also be African-American children?
Dr. DEARBORN. The majority are African-American, probably about two-thirds. Another fifth are Hispanic and the remainder are of other Caucasian races. It appears to be more directly related to socioeconomic conditions than anything directly to race, although obviously we need more research to understand that.
Mr. STOKES. I appreciate the Chairman's reference to the fact that our committee will see that NIH gets the kind of money necessary to investigate this new and very serious emerging disease.
Thank you very much for your testimony.
Dr. DEARBORN. Thank you.
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Mr. PORTER. Thank you, Mr. Stokes. Thank you, Dr. Dearborn.
[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.]
Tuesday, February 3, 1998.
WITNESS
LOU HOLTZ, JUVENILE DIABETES FOUNDATION INTERNATIONAL
Mr. PORTER. Next witness is Lou Holtz, Juvenile Diabetes Foundation International volunteer and former head football coach at Notre Dame University. Coach, it's good to see you.
Mr. HOLTZ. Thank you.
Mr. PORTER. Mr. Dickey.
Mr. DICKEY. I wanted to introduce you all to this man. Two steps before he was appointed by the Pope to coach Notre Dame, he coached at Arkansas. [Laughter.]
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Mr. PORTER. We won't hold that against him.
Mr. DICKEY. I want to tell you—as you were. At Arkansas, I want to say this in all sincerity, he established what's called the do-right rule. He kicked some people off the team and they rushed up to him and said, why, and he said, because they didn't do right.
He has taken the loyalty of the State of Arkansas completely, 100 percent. This is a quality man. Whatever he puts his name behind, he has thought it out and it's worthy of listening to.
So I recommend Lou Holtz to you all and you to Lou Holtz, and this issue to us as a Nation. Thank you for coming, Coach Holtz.
Mr. PORTER. Ms. Northup.
Ms. NORTHUP. Mr. Chairman, I would also like to recommend Coach Holtz. Coach, both my parents went to Notre Dame and St. Mary's. I met my husband the first night of my freshman year at Notre Dame. And nine more of my sisters graduated from there.
So I think the gold on the dome might be out of the tuition that we spent over the years. But anyway, I can tell you that every game that Notre Dame plays is replayed in my house for a solid week until you know every play by heart.
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We had great admiration for you, not only for your football, but also for the motivational talks that you gave in Louisville and other cities around the country, particularly the young people, about working hard and taking a chance. Those were very stirring words and stirred children and adults alike. I'm very happy to see you here, and my parents and husband will be thrilled to hear that I saw you in person.
Mr. PORTER. Coach, even despite Mr. Dickey's endorsement, we are happy to hear from you. [Laughter.]
Mr. HOLTZ. Thank you, Mr. Chairman, distinguished guests and panel. It is a pleasure and an honor to address this group. I am not going to speak from any prepared notes, but I'm going to speak from my heart.
I'm hear to speak on behalf of 16 million people that suffer from diabetes. Eight hundred thousand people are going to be afflicted with it this year. Approximately on the average, 35,000 of your constituents have diabetes. That speaks to hundreds of thousands of people that become associated with it through that.
We need help. I'm here to say, we need help. We can't do it. We've tried. I personally have a son, Kevin, at age 15 was diagnosed with diabetes. We didn't even know what diabetes was. It was a shock to us. We found out that he'd have to take insulin shots three times a day, he'd have to watch his diet.
What we really weren't prepared for was the psychological damage that it did to a 15 year old, to his self-confidence, to his decision making process. Thank goodness, my wife had the time, the effort and the resources to get him through that. He eventually went to Notre Dame and became a lawyer. He moved to Texas, passed the Texas bar, I told my wife it might be the first bar he'd passed since he turned 18, but we're very proud of him. [Laughter.]
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It's been a very difficult struggle, but we feel we've been blessed. It's the leading cost. When you sit down and you find out all of a sudden, he has a better chance to have blindness, to have problems with his kidneys, his chances are greatly enhanced by two to four times that he's going to have heart problems, and the list goes on and on.
It really is something that we really are unaware of, because people try to hide it. They don't want to stand there and have people watch you take a shot or talk about diabetes. You can't tell who's a diabetic, but I can tell you this, it affects the family, it affects your health.
At Notre Dame, I find out my secretary's daughter was a diabetic and had all kinds of problems. I find out my assistant backfield coach was a diabetic. Our equipment trainer's wife was diabetic and blind at age 35. We played Michigan in 1980, and Friday morning I get a call, and thank goodness, my son lived with Kevin. He said, Kevin's in a coma. We rushed him to the hospital, he stayed in that coma from insulin.
What happened is, he went to be, and you have to take your blood and sugar and you get a reading, it's 125. You go to bed and all of a sudden it drops down, you go into insulin shock and you don't wake up any more. We didn't know whether he was going to make it or not.
Our story is not unusual. This is happening all the way around. We spend $137 billion a year on related illnesses or the caring for diabetes. We haven't cured it. All you're doing is going on a life sustaining project to be able to take insulin. There is no way in this world the free enterprise system is going to solve it, because they make a profit from diabetes.
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Now, I'm not saying that they're for diabetes, but there's no great motivation. The only way this thing is going to be solved is through research.
I heard Peter Uberroth say at my son's graduation at Notre Dame, he said, if enough people care, you can solve anything. There are a lot of people who care about diabetes. I believe we raised $57 million last year in individual funds alone. That is an awful lot of money. You could purchase just about anything.
But we can't do it without help. We need the Government's help. And it's not just on my son Kevin. We're talking about 16 million people. I haven't even mentioned the families. We're talking about what happens years down the road.
I conclude with this. I've always told our football team to win. And win stands for what's important now. As I look at it, the future of the young people, I look at my grandchildren, I wonder if they're going to have it, I know the trials and tribulations, the pain and sorrow that goes along with it. So I'm here on behalf of 16 million people, saying we need help.
Thank you for your time and listening to me.
[The prepared testimony of Lou Holtz follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Coach, let me say that, and I often say this, none of us up front here legislative in a vacuum. All of us have individuals in our families that have been touched by various diseases. My wife has diabetes, it came on two years ago, adult onset. I am very seriously concerned about her health, I can see the effects on her. What you tell us is all unfortunately too true.
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That's the reason why this subcommittee has placed biomedical research at a very high priority. We've done our very best to provide the resources to science that it needs to unlock the key to this and other diseases. I can tell you right now we'll do our very best to continue to do that, place it at a high priority and give our research scientists the tools they need to get us by this.
Mr. HOLTZ. Thank you very much. Because I said to my son Kevin, you know, it wasn't a decision he made, it wasn't a choice. It's just congenital, and it's difficult to handle. But we appreciate it.
Mr. PORTER. Thank you very much for coming here and testifying. You're making a difference, and that's what counts.
Mr. HOLTZ. Thank you very much.
Tuesday, February 3, 1998.
WITNESS
CLYDE McCOY, UNIVERSITY OF MIAMI
Mr. PORTER. Dr. Clyde McCoy, Professor of Epidemiology and Public Health and Director, NIDA Comprehensive Drug Research Center, testifying in behalf of the University of Miami.
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Dr. McCoy.
Dr. MCCOY. Thank you, Mr. Chairman, subcommittee.
Boy, it's really tough following Notre Dame. [Laughter.]
Because I not only represent the University of Miami, but also Florida State University today. But before you leave, I do want to exclaim that I am Irish. I am also a direct descendant of the infamous McCoy clan from Eastern Kentucky, and a former professor at the University of Kentucky. Laughter.]
Mr. Chairman, members of the subcommittee, I do appreciate the opportunity to present testimony on behalf of the University of Miami and Florida State University, who is our in-state research and education partner, university-wide. This is a very unique partnership between two of our more prominent universities.
As yet, we haven't joined our football teams, Lou, but we're thinking about it.
We're deeply appreciative of your leadership, Mr. Chairman, and of the subcommittee's confidence. We're especially thankful for the supportive language from your subcommittee over the past two years, and look forward to your continued support for this very unique collaboration in 1998.
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I fully understand and appreciate that at no time in the past have you and your Congressional colleagues faced more challenges and more constraints. Thus, we appreciate even more your willingness to consider this important and unique university-wide research and education partnership.
Also as a former manager for Tom Luken, Mr. Stokes, who served on this Hill for more than 18 years, I am personally impressed with the dedication, commitment and hard work that all of you put in to serving this great country of ours. We feel strongly that the unique challenges that you face have never been greater.
At the same time, there has never been a time in history when there has been greater opportunity for the world to share in the accumulation of knowledge that could have healing and unifying consequences for all human populations. I think you're hearing from all those people here today.
People around the world thirst and hunger for our democratic way of life, which in large part is based upon the scientific enterprise, which allows us to be a knowledge based and democratic society which prizes knowledge and objectivity for supporting not only our health and our economy but also our political processes. We as scientists are most appreciative to you for funding the most science based society ever.
The University of Miami and Florida State University Risk Assessment and Intervention Consortium is dedicated to reducing medical and social costs through the development of cost efficient, effective delivery of earlier interventions. Our consortium will bring together scientists from a very broad array of traditional research disciplines to face scientific challenges in a trans-disciplinary and timely manner.
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In the last 50 years, as you know, tremendous strides have been made by the sciences to improve our world's health and environment. It now appears that the next major breakthroughs for improving quality of life and for reducing socioeconomic costs lie at the intersections of those sciences.
Presently, these various sciences and institutes that fund them work too independently from one another to optimally address the broad and interrelated nature of these problems. To fully consider specific policy implications, or to allow for the investigation of the most threatening risks in the most timely manner.
My own scientific research is somewhat unusual, in that I have conducted research and published in three broad disciplinary areas of cancer, HIV and substance abuse in many countries, with many hundreds of scientists. This perspective of more than 25 years makes me yearn for a greater scientific enterprise that allows us to reach across these various disciplines in order to investigate problems more quickly and to apply the findings in a much more rapid manner.
We feel that our consortium will provide this type of partnership between science and government to assure a more optimal and cost effective quality of life. Risk assessment as a field incorporates scientists from a wide range of disciplines and directs their attention specifically to controlling, regulating or intervening with populations at risk as early as possible.
At present, there is no identifiable broad based institution we know of that concentrates solely upon the full and complex range of risks utilizing multi-disciplinary and trans-disciplinary science. Therefore, our consortium will be in a perfect position to improve quality of life, decrease mortality and morbidity, and through identifying risks earlier and by intervening earlier, be in a position to save millions, if not billions, of dollars through the application of knowledge to early intervention.
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We know that intervention with effective prenatal programs saves a tremendous amount of money that otherwise would be spent on children after birth. Also, our own research experiences with the early detection of breast cancer have demonstrated through the screening of over 30,000 medically underserved women, using an efficient mobile van, rotating among 12 primary public health centers, that these programs not only save lives, but save dollars.
As is true for cancer, we already possess a great deal of knowledge that could be used to develop interventions as well as preventive strategies for many other diseases that present challenges throughout the world, such as HIV, substance abuse and others that you've heard about here today. With the increasing costs of institutionalization and public subsidies and of Medicaid and Medicare, every person who we prevent from being institutionalized or dependent on public subsidies not only saves governmental dollars, but will also add to the economy of this country.
Just as important, the quality of life for these individuals, their families, their communities and our society at large, will be improved. It is becoming ever more apparent that we as a Nation cannot afford to ignore prevention in early intervention strategies, since later management and later treatment are much too costly in the terms of quality of life and necessary expenditures of dollars.
Our proposed organization will cross disciplinary boundaries to accomplish these goals for us.
We thank you so much for your valuable time and stand ready to serve you in any way possible.
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[The prepared statement of Clyde B. McCoy follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. McCoy, thank you very much for your strong and good testimony. Again, we will do our best.
Dr. MCCOY. Thank you very much.
Mr. PORTER. Thank you, sir.
Tuesday, February 3, 1998.
WITNESS
ROBERT M. CAREY, M.D., ASSOCIATION OF AMERICAN UNIVERSITIES
Mr. PORTER. Robert M. Carey, M.D., Dean of the University of Virginia School of Medicine, testifying in behalf of the Association of American Universities. Am I correct, Dr. Carey, that you are accompanied by Sue Quantius?
Dr. CAREY. Yes.
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Mr. PORTER. One of the most able people ever to serve on Capitol Hill, and as a member of the staff of this subcommittee, Sue, it's really wonderful to see you. Thank you for being with us.
Dr. Carey, we welcome you.
Dr. CAREY. Thank you, Mr. Chairman.
Mr. Chairman, distinguished members of the subcommittee, I am Dr. Robert M. Carey, Dean of the University of Virginia School of Medicine. I am pleased to be here today representing the Association of American Universities, the AAU, an organization of 62 public and private research universities across the United States and Canada.
Today, we are pleased to have the opportunity to speak about a Federal program of enormous importance to our universities, research supported by the National Institutes of Health. We come before the subcommittee at a time of great promise for biomedical research. We are grateful for the subcommittee's consistent, strong support of the NIH. You have been champions of biomedical research, particularly you, Mr. Chairman, even when substantial cuts were being made elsewhere in your appropriations bill.
Your commitment to biomedical science has cone much to create the current atmosphere in which support for the NIH is spreading throughout the country. We are greatly heartened by the groundswell of public sentiment for investing in biomedical research, and the possibility that the healthy economy and the fiscal accomplishments of Congress will permit financing this priority.
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You have already heard many witnesses describe the tremendous opportunities in science and the breathtaking speed at which discoveries are being identified. I would like to give you one example that comes from my own field, high blood pressure research. High blood pressure, or hypertension, is the most common cause of heart failure, which in turn is the most common reason for hospitalization over the age of 65.
Hypertension is caused by the interaction of many different genes. In the past, the polygenic inheritance of blood pressure has prevented our understanding of the mechanisms underlying hypertension. Therefore, we do not have a treatment of hypertension specific for the cause of that disease.
Recently, the gene for a hormone, angiotensin, has been shown to account for a substantial fraction, about 15 percent, of hypertension for the first time. Clearly, the techniques of molecular biology are poised to open the door to specific treatment and cure of high blood pressure, once its genetic determinants are known.
The AAU supports efforts underway throughout the biomedical community to increase substantially funding for the NIH. We join the ad hoc group for medical research funding in its call for a 15 percent increase for NIH in fiscal year 1999 as the first step in a five year effort to double the NIH budget.
We are greatly encouraged by the President's request for an 8.4 percent increase for the NIH as the starting point for the debate this year. The AAU would like to highlight needs which should be addressed if new resources become available. The AAU continues to emphasize the investigator-initiated grant as the bedrock of the NIH.
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We also want to focus attention on pressing needs in two areas, clinical research and institutional infrastructure. The dominance of market forces in the health care system has drained resources that previously had been used to support clinical investigation and clinical investigators. Training and career support for clinical researchers at all levels needs strengthening.
The general clinical research centers program, which supports inpatient and outpatient research facilities, training research support staff and other resources crucial to clinical investigation, should be targeted for additional resources. The second area of concern is institutional infrastructure. Additional resources need to be invested in renovating outdated facilities, supporting animal research facilities, financing instrumentation, and developing new research technologies.
In addition, the AAU encourages Congress to consider reinstituting a peer reviewed accountable institutional grant program that can be targeted to specific institutional needs. Mr. Chairman, thank you for this opportunity to express our views and add our voices to the growing chorus of advocates for biomedical research.
[The prepared statement of Robert M. Carey, M.D., follows:}
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Carey, thank you very much for your excellent testimony. I have to say, it just happens that you're the one to receive my sermonette, because I've given it to every panel that has come before us in this session. And it goes something like this.
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This subcommittee, I think, would place raising the support for biomedical research at a very high priority, and would commit the resources to doubling the research enterprise over the next five years, if we have the resources with which to do it. The difficulty is that even the President's budget, and he's suggesting only doubling the commitment over 10 years or 50 percent over 5 years, even the President's budget depends upon revenues that we think are not likely to materialize in the budget process here in the Congress.
He's got about $100 billion of net new revenues, a large part of which is a tobacco settlement that I don't think is going to happen, and other increases in taxes that i don't think are going to be voted. That means it's going to be difficult for this subcommittee to get the kinds of resources that we need in our budget allocation without some real strength in the Budget Committee.
We hear you very clearly, very loudly. We need your help in the budget process as well, however, to give us the tools we need to work with, so we can give you the tools you need to work with. That's my sermonette, and I thank you very much for listening to it and for testifying.
Dr. CAREY. I thank you so much for your support.
Mr. PORTER. Thank you, Dr. Carey.
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Tuesday, February 3, 1998.
WITNESS
ANTONIO DE LA CRUZ, M.D., AMERICAN ACADEMY OF OTOLARYNGOLOGY-HEAD AND NECK SURGERY, INC.
Mr. PORTER. Antonio De la Cruz, M.D., President, American Academy of Otolaryngology-Head and Neck Surgery, Inc., testifying in behalf of the American Academy of Otolaryngology and the Head and Neck Surgery Inc.
Dr. RUBIN. Good afternoon. I'm Dr. Rubin, and I'm here to introduce our President, Dr. Antonio De la Cruz, who will testify. However, before we begin, I'd like to tell you how much we appreciate your work, Mr. Chairman, and that of the subcommittee for the past several years. For without your leadership, the marvelous groundswell of support for the NIH that we see would not have occurred.
Dr. DE LA CRUZ. Mr. Chairman, thank you for the opportunity to present my testimony, and for all that you have done in the past.
Thanks to leadership like yours, and the funding of NIH, we have a real chance to wipe out communication disorders, or at least to improve them significantly. In the last few years, we have been able to detect some of the genes of hereditary deafness. We have been able to improve in the reconstruction of holes in eardrums and replace little bones to improve hearing of something that has occurred. We have developed an electronic ear that can replace nerve loss. For the first time we are able to stimulate the brain that way and replace an organ.
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But we are at the brink. We have a good chance to eradicate, or to have a significant impact on communication in the next few decades. We are indeed needing the basic research that only government can do to establish more of the genetic basis of disease.
We also became aware, yesterday we spent all day at NIH, and particularly at NIDCD, the deafness and communication disorders, the smallest and the youngest of the Institutes of Health. Analyzing the economic consequences of communication deficits and the social price of that, it became obvious after seven or eight hours of analyzing the situation how our ability to earn a living has changed.
From the beginning of the century, where manual labor was the most important element, to today's communication. We feel that in this year, the projections of the Bureau of Labor is that by the year 2005, 92 percent of all jobs will require a tremendous amount of communication.
So we think we have a tremendous impact. The National Institute of Deafness and Communication Disorders has a mission to put together the social impact and the basic research, the technology to try to make those individuals productive in our society. Not only the tremendous price of human pain of being deaf or not being able to speak or have a language disorder or speech disorder, but also the cost to our country.
The productivity of the individual today, with computers, with telephones, with faxes, is depending on communication. So we are part of the ad hoc group of labor, and I mentioned to you, we are looking for a 15 percent increase. Actually, asking for NIDCD, the Deafness and Communications Disorders, an 18 percent. Because we feel that the urgency of the smallest and the youngest of the Institutes is there.
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We did work this morning with the Budget Committee trying to find other avenues to afford to you the caps and the amounts, to see if we can make a tremendous difference in the next few years.
I want to thank you personally on behalf of the Academy, which represents 10,000 otolaryngologists and the largest organization in the world, for all that you have done in allowing us to get where we are today.
[The prepared statement of Antonio De la Cruz, M.D., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Thank you very much for your testimony, Dr. De la Cruz. I think NIDCD is no longer the youngest. In fact, I think there are two younger institutes.
Mr. DE LA CRUZ. It is very young and one of the lowest. When you see all the budgets——
Mr. PORTER. Human genome research and nursing are both younger, if I'm correct.
Mr. DE LA CRUZ. They are the youngest, and when you see all the fundings of the National Institutes of Health, it's way down on the right hand. We want to move it to the middle somehow.
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Mr. PORTER. That message I got very clearly. [Laughter.]
Mr. PORTER. We thank you for your testimony, and we'll do our best, as you know, to put it at a high priority.
Dr. DE LA CRUZ. Thank you very much, Mr. Chairman.
Mr. PORTER. Thank you.
[Clerk's Note.—Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives wa snot received from this witness or from an entity represented by the witness]
Tuesday, February 3, 1998.
WITNESS
DEBBIE FLADER, ADVOCATES FOR EPILEPSY
Mr. PORTER. Our next witness is Debbie Flader, parent of a child with epilepsy and National Co-Chair of Advocates for Epilepsy, testifying in behalf of the Advocates.
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Ms. Flader.
Ms. FLADER. Good afternoon.
I am the parent of a child with epilepsy. I'm here today on her behalf and on behalf of hundreds of thousands of other children and families with epilepsy across America. Thank you, Mr. Chairman, and members of this committee, for inviting me to share my story with you today.
Six years ago a nightmare began for my family that has profoundly changed our lives. On February 12, 1992, my daughter Noel began to display neurological symptoms that we neither recognized nor understood. Noel was eight years old, and she had been a perfectly healthy child, but on that day, she began to complain of bizarre sensations, a feeling that she had a bubble in her cheek, and that her hands were falling, a complaint that her teeth hurt.
With days, these symptoms worsened, and we realized that something very dreadful was happening. The day my daughter developed epilepsy, we joined two and one half million other American families who also are affected by this disorder.
Approximately 30 percent of people with epilepsy do not respond to current therapies. Nearly one million people with uncontrolled intractable seizures. And 30 million Americans die each year of epilepsy related causes. Noel is one of those 30 percent whose seizures cannot be controlled.
A week after the initial symptoms surfaced, we noticed further signs of trouble. Noel's eyes and mouth began to twitch periodically and she began to drool. Our family physician scheduled an MRI to search for more reasons for these spells, as we called them. Though these twitching and drooling episodes were coming by the hour, the MRI showed nothing.
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We went home and watched helplessly as Noel's condition deteriorated. The pain in her teeth became excruciating. The spells were now occurring every 15 minutes. She lay awake most of the night with the right side of her face twitching.
We took her to a neurologist, but after an exam and an EEG he called normal, he sent us home with Advil for pain in her teeth and a diagnosis of a psychosomatic illness. This doctor then explained that Noel was probably exhibiting a typical middle child reaction to not getting enough attention at home. We knew, however, that her suffering was very real.
Finally, we took Noel to Children's Memorial Hospital in Chicago. After weeks of tests, we were told that she had epilepsy.
Noel remained alert during her seizures, which by now would last up to an hour. Imagine watching your child's face contort and twitch for that long a period. Imagine that she be conscious, yet unable to control her body's movement. Imagine the sense of helplessness you feel.
Noel was given many different anticonvulsant medications, but to no avail. She vomited constantly, but the seizures still continued, one after another. She was started on a very, very high dose of Prednisone, a corticosteroid, and this seemed to calm down the seizures a bit.
We witnessed a total personality change due to the medication. Our once playful and happy child was angry with everyone and everything. She used foul language and became very violent. We desperately searched for a better answer.
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In August of 1992, Noel had an EEG and an MRI, and this time a small lesion was found on her brain. To rule out an underlying tumor, a biopsy was done, along with a sub-peel transection, which is a surgery designed to break up the electrical current in the brain without removing any tissue, a technique that sometimes is effective in limiting seizures, though not for Noel.
Fortunately, there was no tumor. The post-surgical diagnosis was Rasmussen's encephalitis, a sometimes degenerative condition of the brain that can cause epilepsy.
What's disturbing is that the nature of Noel's seizures has changed. She now has what are called atonic or drop attacks. This means she can fall at any moment and severely injure herself. She can no longer attend school with other kids. She is presently tutored at home to avoid the risk of injury. For a young teenager, this is no life.
Recently, along with other parents, I have formed Advocates for Epilepsy. Our hope is that by telling our stories, which mirror the experience of hundreds of thousands of other children and families across this country, we can persuade you to devote more resources to the fight against epilepsy.
We are grateful to the Epilepsy Foundation of America and the Epilepsy Foundation of Greater Chicago for supporting our efforts. Perhaps because many people assume epilepsy is easily treated by medications, or perhaps because it is a disorder that for thousands of years has been stigmatized by those who don't understand it, the investment in epilepsy research has lagged far behind what is needed.
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Though millions of Americans like Noel struggle with epilepsy, Federal research dollars into this complex short circuiting of the brain currently amounts to just $20 per patient per year. As the accompanying chart reflects, that is comparatively little. We are asking that you triple research dollars spent on epilepsy. Specifically, we're requesting an increase from the current $54 million to $130 million in the next fiscal year.
These are dollars we desperately need to unlock the mysteries of the brain. We need new research, new solutions, and much more energy in the field.
The future of our children depends on this effort. The future of all people with epilepsy lies in discovering causes, new treatments, and potential cures. Although 75 percent of epilepsy begins in childhood, anyone can develop epilepsy at any time in their lives.
With the current low level of funding, new discoveries to help these people are a long way off. We appeal to your sense of compassion, but we also want you to know that beyond the personal costs, the costs to our Nation of intractable epilepsy are staggering. Frequent emergency room visits, lost school days, special ed, inability to work, dependency on families and permanent government support, these costs, which amount to some $3 billion per year, far outweigh the investment in medical research we are requesting.
In closing, Mr. Chairman, let me say that our children's lives are passing quickly, brutalized by repeated seizures and living under the veil of heavy medication. They truly are our heroes. It is now time for us to become their heroes.
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Please help us to succeed in finding better treatments and possibly even a cure for epilepsy.
[The prepared statement of Debbie Flader follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Ms. Flader, thank you for your testimony.
You're a Chicagoan, right?
Ms. FLADER. Yes.
Mr. PORTER. You mentioned the Children's Memorial, which is one of our great treasures in the City of Chicago, and apparently had some degree of help for your daughter's disease.
Ms. FLADER. Some. I've traveled all over the country looking for better. One seizure per day is not satisfactory. I need no seizures.
Mr. PORTER. But they were the first, according to what I thought you said, to actually identify this.
Ms. FLADER. Right. They did help me, right.
Mr. PORTER. One thing I want you to know, and I think it's very important that people understand this, and that is that we do not fund by disease. We fund by Institute.
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Ms. FLADER. I understand that.
Mr. PORTER. I knew you understood it, but this is sermonette number two. We do, however, and very forcefully, I think, attempt to influence the direction that NIH takes in respect to its priorities. I think NIH has been very responsive to the concerns that Congress expresses. Yet we are very careful not to override scientific judgment with political judgment.
I think that's exactly the way this ought to work. And it is a cooperative endeavor, in a very real sense, that we engage in with NIH to attempt to work with them on priorities. And yet, in the final analysis, NIH makes those decisions through science and not through the political process.
We appreciate your testimony. There's been a number of groups here to testify on epilepsy. Is there some coordination between them?
Ms. FLADER. Yes, we're being supported by the Epilepsy Foundation of America, and the Epilepsy Foundation of Greater Chicago. We've been working together collaboratively on this issue, trying to get more Federal dollars for research.
Mr. PORTER. We're going to do our best.
Ms. FLADER. Thank you.
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Mr. PORTER. Thank you 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]
—
Tuesday, February 3, 1998.
WITNESS
A. GERALD ERICKSON, METROPOLITAN FAMILY SERVICES
Mr. PORTER. A. Gerald Erickson, President, Metropolitan Family Services, testifying in behalf of Metropolitan Family Services. Gerry, it's very good to see you. We thank you for coming to testify. Another one of the treasures of our city.
Mr. ERICKSON. Thank you for having me. If I might do a quick sort of reverse sermonette, I just wanted to say a word in support of Coach Holtz' testimony, my wife and I are also parents of a juvenile diabetic. And everything he said was certainly right on.
I'm also aware of the leadership that you've given in this area in the past, and just wanted to say a word of appreciation.
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Thanks for the opportunity to testify again this year. I am testifying on behalf of Metropolitan Family Services of Chicago. We are a comprehensive, non-profit, non-sectarian human service organization that serves over 100,000 families a year in the Chicago area.
While our focus on working with families has remained constant, the needs of families have changed as culture and policies have shifted. As communities, public systems and families express needs, we respond. I present this testimony this year to provide a status report on Metropolitan Family Services' ongoing efforts to be innovative and effective in our programming in the areas of community violence prevention, mental health services and elder care.
Since the passage of the Violence Against Women Act in 1994, community coalitions to prevent intimate partner violence have been forming all over the country. In the context of this movement, we have been discussing an exciting new initiative with the Centers for Disease Control and Prevention which we are calling Coordinated Community Responses to Prevent Violence.
CCR will provide resources for communities to develop, implement and evaluate violence prevent programs in the following areas: intimate partner violence, youth violence, sexual assaults, suicide, child abuse, elder abuse and gang violence. The basic concept behind CCR is to engage the community itself in defining the problems and molding the solutions that are most likely to create genuine systemic change.
At Metropolitan Family Services, we have experience in collaboration with local residents, service providers and business, religious and civic leaders. Our community development methods enable whole communities to respond to and solve complex social problems. Mr. Chairman, we ask that the subcommittee encourage the CDC to continue to explore CCR as a program concept.
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We also provide needy Chicago area adults, children and families with a comprehensive range of community based mental health services. We know from experience with emotionally disturbed children that early intervention, treatment, parent education and other supports to families make a difference in ameliorating more serious conditions in the future.
With an early intervention approach in mind, Metropolitan Family Services has developed a model for identifying young children and families at risk for behavioral disturbance, mental illness, and substance abuse. The cutting edge model would bring behavioral health care services and other needed resources directly to families within an early childhood setting. The model seeks to support and empower parents to become the primary intervention agents for their own children.
We ask that the subcommittee urge the Department of Education to consider demonstrating and evaluating such an early intervention model so that emotional and/or behavioral problems can be identified and dealt with early on.
Finally, Mr. Chairman, we would like to bring the subcommittee's attention to a study by the National Alliance for Caregiving, which revealed that nearly one in every four households is involved in family caregiving to elderly relatives or friends. The present division of acute and long term care for the elderly is ineffective and costly, especially in responding to the needs of the elderly with chronic conditions.
The current system also penalizes family involvement in the care of the elderly. We believe that a conscious effort should be directed toward the development of innovative family and community responses to the care of the elderly. We ask that the subcommittee encourage HCFA to work with community based organizations to create long term care systems that recognize the role of the family in caring for elderly relatives.
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Thank you for the opportunity to present this testimony again this year, and for the opportunity also to visit with you some months ago.
[The prepared statement of Gerald Erickson follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. I appreciated that opportunity, also. Mr. Erickson, you talked about the new violence prevention initiative that you're working on. How does that differ from what CDC has done in the past in this area?
Mr. ERICKSON. The difference is that CDC currently does its program by age grouping. I think their interest in us and our interest in them goes to the fact that we work with the full continuum, so that we would be not only dealing with teen violence, but at the same time, elder abuse. We would involve the community in developing the solutions. Again, a kind of a bottom up approach. The violence, in a continuum in the community, rather than to take out difference pieces as is currently done.
Mr. PORTER. I'm very impressed with what Metropolitan Family Services is doing, not only in terms of making changes in peoples' lives who need the attention, need help, but also involving people throughout the Metropolitan area who care about one another in that process, and bringing a lot of private resources as well as public resources to bear on these problems.
So you're doing a wonderful job, and we appreciate your coming here to testify.
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Mr. ERICKSON. Thank you very much.
Mr. PORTER. Thank you, sir.
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Tuesday, February 3, 1998.
WITNESS
MARY WOOLLEY, RESEARCH! AMERICA
Mr. PORTER. Mary Woolley, President, Research! America, to testify in behalf of Research! America.
Mary, it's nice to see you.
Ms. WOOLLEY. Thank you, Mr. Porter.
Chairman Porter, I'm Mary Woolley, President of Research! America, a national not for profit public education and advocacy alliance, dedicated to making medical and health research a much higher national priority. On behalf of our more than 350 members, individuals, academic institutions, corporations and voluntary health organizations, we thank you for your leadership when it comes to medical research. Medical research is a national issue, and it is also, as we have heard so persuasively this afternoon, a deeply personal issue that impacts every American.
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Research! America is proud to serve as a voice for citizens who are concerned about medical research. Since 1992, we have commissioned regular national and state based public opinion polls, and have regularly conducted focus groups to explore attitudes and identify citizen issues and concerns regarding research. What we have found is that all over the country, citizens place their trust in research and research-based organizations to make the discoveries that will translate hope into cures, preventions and treatments.
We've also learned that citizens look to you and all our elected representatives to provide the resources to make those discoveries possible.
Along with the American Medical Association, whose house of delegates recently passed a resolution in favor of doubling the National Institutes of Health budget, and the Ad Hoc Group for Medical Research, whose eloquent statement calling for a 15 percent increase this year in the NIH budget we heartily endorse, and the many other concerned organizations, Research! America is convinced that because we have invested and now have in place an army of gifted researchers, and because the opportunity in science is at an extraordinary level right now, now is indeed the time for a concerted effort to double the budget for the NIH over the next five years.
With your leadership, we think this goal is attainable. The public supports this goal, as you can see on our poster here. This data is from our most recent poll, in which 61 percent of American citizens say they favor doubling medical research. Now, this poll was taken just about a year ago. But I am gratified to be able to announce here that just last month, January 1998, a Wall Street Journal-NBC national public opinion poll found that by better than a two to one margin, a little better than we saw in our poll, the actual numbers are 64 percent favoring and 25 percent opposed, the public favors doubling the current NIH budget of $13 plus billion over a five year period.
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With the commitment of this subcommittee, accompanied if necessary by innovative additional funding mechanisms, doubling the NIH budget, we think, can become a reality. The public, in fact, is willing to contribute additional funds to make this possible. Research! America has tested several possible mechanisms for identifying additional monies to supplement appropriated dollars to accomplish the doubling goal.
Among those, timely, in light of possible tobacco settlement, is our finding that about 63 percent of the public say that they would sign a petition to increase cigarette taxes to provide funding for medical research. You see that here. We believe that a similarly high percentage, or even higher, would agree with dedicating a portion of new taxes enacted in conjunction with a tobacco settlement, cigarette taxes.
Now, so far, this is admittedly only an opinion, but later this month, our new polls will test citizens response to that very question. And I look forward to being able to advise you and all the members of the subcommittee of the results of those new polls.
Another mechanism also in the realm of the hypothetical, but greatly hoped for in many quarters, involves a budget surplus. Citizen priorities for surplus generated dollars has been tested by many polls of late. When Lou Harris and Associates asked citizens this past November how they felt about money from a budget surplus being used for additional spending on current programs, 81 percent said they would support surplus dollars going to medical research.
Now, based on our Research! America findings in polls and focus groups, there are just two other points I would like to emphasize concerning the decisions you and your colleagues will be making about research in this Congressional session. Both concern the fact that citizens do not want doubling of the budget of the National Institutes of Health to come at the expense of other health and science programs.
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Research! America polls show that citizens value prevention research, for example. It is not surprising that there is such strong interest in prevention research, since everyone would agree that the ultimate goal is to eradicate, not just ameliorate, dreaded diseases like cancer, AIDS, diabetes, heart disease and stroke.
What is surprising is that funding support does not match the public's mandate. This public mandate translates to achieving stronger support for the Centers for Disease Control and Prevention and the Agency for Health Care Policy and Research in tandem, not instead of increasing support for the NIH.
My final point is based on a finding from our polls that strongly supports Federal investment in scientific research of all kinds as conducted in universities. New ideas and breakthrough technologies in fields such as engineering, physics, mathematics and chemistry have been instrumental to progress in the life sciences in the past. And this important synergy must be nurtured as we move into the new millennium.
Doubling the NIH budget in five years is the right first step to achieve the great promise of research. Doubling the NIH budget in five years would allow the 105th Congress to place its stamp on history, contributing in never before possible ways to the health and quality of life of Americans.
In poll after poll, the message is clear that citizens back you and all our elected representatives when it comes to seizing the opportunity that science offers at this moment in our history. Nothing less than the health and well-being of my family and yours and that of every American is at stake. We put our trust in our elected representatives to make the investments it will take to hasten the day when we will speak of cancer, premature heart disease, AIDS, diabetes, and a host of other dreaded diseases, as finally conquered by American scientific know-how.
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Thank you.
[The prepared statement of Mary Wolley follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. That's a wonderful statement.
Mary, what's the relationship between Research! America and the Ad Hoc Group for Biomedical Research?
Ms. WOOLLEY. We work very closely together, Mr. Chairman. The Ad Hoc Group has many members, almost the same membership as Research! America. The Ad Hoc Group carefully, every year, evaluates with the help of many scientists the potential for what can be accomplished in science, and makes a recommendation as to what the budget should provide for the science.
What we do is test the citizenry's attitudes about using their public dollars in its support.
Mr. PORTER. If I can express something and you can evaluate this for what it's worth, I'm kind of surprised at the degree of opposition in your survey of 1996, that was about a third of the people who answered yes or no answered no. And you say 25 percent now, what would be about a quarter in a more recent survey. I think I was even more surprised at the 34 percent who said they wouldn't use an increase in cigarette taxes or they wouldn't advocate for an increase in cigarette taxes to be used for biomedical research.
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I think we've got to work on these people.
Ms. WOOLLEY. You bet.
Mr. PORTER. I don't understand, especially the one on smoking. The degree of cost to society of nicotine addiction is huge. If there was ever a justified source in my mind, and I may differ from others, but in my mind for funding biomedical research, it's a tax on tobacco and tobacco products.
So I'm surprised that the numbers are that high. I wonder if they, often our surveys stop before they get to the really significant questions. Okay, if you're opposed, why are you opposed? What is in your mind that leads you to that. Did you ask the further questions?
Ms. WOOLLEY. What we do is in our focus groups we go to the next level.
Mr. PORTER. You get that in focus groups.
Ms. WOOLLEY. It's difficult to do that in polls, because then you get into a lot of open-ended sampling that's hard to record and a lot of judgments have to be made about the recording.
But in focus groups, negatives come from a lot of different directions. They come from feelings against the government in general, anything having to do with the government then becomes a negative for some people.
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But I think your point about the need to get to the people who are feeling negative is an important one. And through a program that we're operating called the 435 project, we're providing the tools and some assistance and motivation to members of the scientific community to get out into their own local towns and surrounding areas and answer citizens' questions about research and make the case.
Mr. PORTER. Absolutely. I know you're doing this, and I think that is absolutely the way to go about it, face to face communications, and where you can't have that, op ed pieces or letters to the editor, something to have the scientific community make the case for research I think is very, very important to establishing that as a priority among the American people. Because after all, what we do here is just listen and respond to what people think back home.
Ms. WOOLLEY. Well, you can teach the rest of us a lot about communication, and we're trying to learn.
Mr. PORTER. Well, you're doing an excellent job. We thank you for all that you do and for coming here to testify today.
[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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Tuesday, February 3, 1998.
WITNESS
JUDITH FLINK, THE COALITION OF HIGHER EDUCATION ASSISTANCE ORGANIZATIONS
Mr. PORTER. Judith Flink, President, the Coalition of Higher Education Assistance Organizations, testifying in behalf of the Coalition.
Ms. FLINK. I'm the Director of Student Financial Services at the University of Illinois at Chicago, President of the Coalition of Higher Education Assistance Organizations, the wife of a high school teacher at Waukegan High School, but most importantly, a parent. It is an honor to appear before you today to present testimony regarding the importance of continued Federal support for the Federal Perkins loan program.
As you know, the student body at UIC is rich with ethnic and cultural diversity. Of the 26,000 students at UIC, 74 percent receive some form of Federal financial assistance. We have participated in the Perkins loan program since its establishment in 1958.
Over 20,000 students have borrowed over $38 million. Nationally, $13 billion has been borrowed. Last year, our campus received $614,000 in funding from the Federal capital contribution, which we matched with $250,000, further expanding available Perkins funding.
The Perkins program is a crucial resource for needy students. Mr. Chairman, in 1996, Perkins loans went to approximately 750,000 students at over 2,700 participating institutions. Furthermore, the 5 percent interest rates makes Perkins affordable for students with limited resources.
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The $135 million Federal capital contribution that was appropriated by Congress in fiscal year 1998, combined with other funding, leveraged over $1 billion in new loans for undergraduate and graduate students throughout our Nation. Approximately 77 percent of Perkins borrowers are from families with incomes of less than $42,000 per year, and 25 percent of these borrowers are from families with incomes below $24,000.
Federal legislation places borrowing limits on guaranteed and direct loans, making the Perkins loan the vital gap filler for eligible low income students. Without Perkins, the alternative are limited to costly plus loans or private label loans, which are often unrealistic options for these students, because they require either creditworthiness or a co-signer.
Every year, financial aid administrators are forced to tell thousands of eligible students that they cannot obtain a Federal Perkins loan because of insufficient funds on our campuses. The average loan of $1,500 is well below the statutory limits. These students, some of the neediest in the country, are forced to turn to more expensive borrowing options.
For example, this year at UIC, we'll loan $3.9 million to over 1,800 students. However, we could loan to 3,600 students $7 million.
Let's turn now to the charts. The first chart depicts the cost of attendance at a State university. As is typical of many Perkins borrowers, the student has need, but does not receive a maximum Pell Grant. The State grant is significant, and the student will work for Federal work study funds. However, she'll still need to borrow.
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The $2,625 represents the maximum amount of a subsidized Stafford Loan fund that is available to her. Her remaining unmet need of $3,000. In this situation, Mary could be awarded a $3,000 Perkins loan.
The second chart compares the total cost to borrowers of various federally supported loan programs. As you can see, a $15,000 loan costs the students much more than its face value. However, the Perkins loan is the best economic option for the students to meet the cost of their education.
In addition to the interest rate of 5 percent, Perkins loans offer students pursing degrees in teaching or other community service professions valued cancellation benefits. The Administration and other law makers including Representative Bill Paxton from New York have proposed new programs offering student loan forgiveness in exchange for teaching. The Perkins program is the logical program to serve as the basis for this initiative.
Additional funding for the Perkins program would serve students' needs and would prove more cost effective than the creation of a new program or new benefits in existing programs.
Most importantly, it would revitalize the original purpose behind the enactment of the Perkins loan program, providing low cost loans and a cash cancellation incentive to the future teachers of America.
Since 1980, the purchasing power of the Perkins loan has eroded 90 percent relative to inflation. The Administration's fiscal year 1999 request of $60 million in new FCC funds, combined with $40 million from recaptured dollars in the program, will further this decline. COHEAO would like to request an increase in funding for the Perkins program to $200 million in FCC. This increase will allow more schools to lend more money to more students and to begin to alter this negative trend.
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I appreciate having the opportunity to testify before you today on the importance of the Federal Perkins loan program. On behalf of UIC and COHEAO, and most importantly as a parent, I urge you to consider the legislative proposal I've discussed regarding this very important program. Keeping the Federal Perkins loan program strong is one way we can promote access to higher education.
[The prepared statement of Judith Flink follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Are the interest figures you show up there today's figures?
Ms. FLINK. Yes. For instance, the spread between a Perkins loan and a Perkins loan, the Perkins is 5 and your subsidized loans are 8.25. Then it goes up from there.
Mr. PORTER. And the pluses, it represents sort of a market value today?
Ms. FLINK. To parents, yes.
Mr. PORTER. Right.
Ms. FLINK. It's the parent loan to undergraduates.
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Mr. PORTER. There's a big difference between the plus loan, for example, and the Perkins, a huge difference.
Ms. FLINK. Yes. The Perkins loan is what we would really like to be giving to our neediest students, versus the more expensive options.
Mr. PORTER. Well, we thank you very much for testifying. Your husband teaches at Waukegan High School?
Ms. FLINK. Yes, he started two years ago.
Mr. PORTER. And where do you live?
Ms. FLINK. In Morton Grove, grew up in Northbrook.
Mr. PORTER. Oh, you're almost in my district. [Laughter.]
I used to represent Morton Grove, but they took it away from me in 1982.
Ms. FLINK. But I was born in your district, and he teaches in your district.
Mr. PORTER. So in the morning you get up and go in opposite directions. You go south and he goes north.
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Ms. FLINK. That's kind of why we ended up right where we are, 35 minutes either way.
Mr. PORTER. Oh, Morton Grove's a really nice community, and I'm sorry I don't have it any more. Well, we very much appreciate your testifying.
Ms. FLINK. Thank you very much.
Tuesday, February 3, 1998.
WITNESS
JOYCE WESSEL RAEZER, NATIONAL MILITARY FAMILY ASSOCIATION
Mr. PORTER. Carl M. Kuttler, Jr., President, St. Petersburg Junior College, St. Petersburg, Florida, testifying in behalf of the college. Is Mr. Kuttler here? He apparently is not. If he arrives later, we will put him back in the rotation.
Joyce Wessel Raezer, Educational Specialist for the Government Relations Department, testifying in behalf of the National Military Family Association.
Ms. RAEZER. Thank you for allowing us to be here today to speak on behalf of military families and military children.
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Mr. Chairman, NMFA and the families we represent are grateful to you and the subcommittee for your untiring efforts on behalf of military children and the Impact Aid program. We commend you and other Congressional supporters of Impact Aid for securing the fiscal year 1998 appropriation of $808 million, an increase of $78 million over fiscal year 1997.
Thank you for recognizing the importance of this program to the basic education of 500,000 military children and several million of their civilian classmates.
Although the Federal Government has acknowledged its responsibility to provide Impact Aid the program has not been fully funded since 1970. Also, the level of funding has fluctuated from year to year, even with much appreciated Department of Defense supplemental funding for the most heavily impacted districts. Local and state taxpayers are bearing an increasingly larger part of the burden for Federal students.
I must also note that a DOD supplement of $35 million was authorized for fiscal year 1998, but was not appropriated.
Fiscal year 1998 Impact Aid appropriation was generous by the standards of previous years. We know this increase will enable districts educating military children to serve all their students more effectively. Because Impact Aid dollars are targeted where the Federal responsibility is the greatest under the law.
Impact Aid goes directly to school districts, with no strings attached. The local community, the people who have the greatest stake in the quality of education in their schools, decides how these funds will best serve the needs of their students.
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Continued consistent funding at or near the authorized level will help these districts plan for the future and budget for special education, technology, transportation, programs to raise standards, and salaries high enough to keep quality teachers. Impact Aid helps these districts approach the level of educational opportunity available in non-impacted districts, even though they do not have the access to the same kind of tax base.
Nothing is harder for the heavily impacted districts to fund than major construction and maintenance projects. Attachment A of my written testimony illustrates some typical construction needs. These districts often find it difficult to float bond issues or take advantage of states' offers of matching funds. They often must defer routine repairs and maintenance when they have to buy textbooks or computers or other new technology.
But children need safe, structurally sound buildings in which to learn. School construction funding, especially for districts least able to raise money in their own communities, must be a priority. We are grateful for the high level of funding for fiscal year 1998 which allows continued impact aid for the Military B students, the children of military members living in the local civilian community. Large numbers of transient military children do have an impact on a district, even when their parents pay real estate taxes. Unless residing in a legal domicile, military members often do not pay many of the other taxes that States and localities use to fund education. Districts with transient populations need more staff to evaluate and quickly place children in appropriate educational programs, provide remedial help if necessary, and manage the flow of student records in and out of the district.
We ask that you continue to recognize the Federal responsibility to provide funding for military children living off the Federal installation.
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Military families list education as one of their most important quality of life concerns. Military commanders know that worries over the education of their children affect the morale and retention of their personnel. In this age of increased accountability, military families hold their children's schools to a higher standard than any State does. We insist that schools prepare our children to enter school at our next assignment, no matter where in the world that might be, with the skills and knowledge necessary to succeed. Military families expect our children's schools to have the resources to meet that standard.
School districts have accepted the responsibility to educate military children. The Federal Government must provide the resources it has promised to support that education.
[The prepared statement of Joyce Wessel Raezer follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Mrs. Raezer, I couldn't agree more. It seems to me if there is anything that ought to be an entitlement in our system as something that the Federal Government is obligated to pay, rather than subject to appropriations each year, it's impact aid. Yet this is one that isn't an entitlement, and unfortunately one that most Members of Congress don't have. Maybe there are 120 or 125 Members that have impacted schools in their districts. That means there are 300 Members, let's say, that don't know anything about the program. It makes it very, very difficult to get the support that we need for the Federal Government to meet its obligation.
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I happen to have the largest primary naval training facility in the world in my district. I have a school in North Chicago, Illinois that is impacted just about 50 percent, and believe me, it is essential aid for that school system. If it wasn't there, the school system couldn't exist, to begin with.
Also the point that you made about the impact on local taxpayers. If the Federal Government doesn't meet its obligations and responsibilities, local taxpayers get angry at the military families, who have nothing to do with it, and the kids who have nothing to do with it, and it creates the kind of situation that is very destructive of learning and good relationships between people and kids.
So I think this is a very high priority. We've done our best to come closer to what the Federal Government ought to be paying and will continue to do our very best to put it at a high priority.
Ms. RAEZER. As I said, we do appreciate your efforts and your advocacy for this program.
Mr. PORTER. It's enlightened self-interest in my case.
Ms. RAEZER. Well, it is in ours, as well.
[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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Tuesday, February 3, 1998.
WITNESS
FRANCIS J. DAVIS, JR., REFLEX SYMPATHETIC DYSTROPHY SYNDROME ASSOCIATION OF AMERICA
Mr. PORTER. Francis J. Davis, Jr., Co-founder and President of Reflex Sympathetic Dystrophy Syndrome Association of America, testifying on behalf of the Association.
Mr. FRANCIS DAVIS. Good afternoon, Chairman Porter, ladies and gentlemen. I am here on behalf of the efforts of a Ms. Donna Feldman, one of your constituents from Deerfield, Illinois. Again, I am President of Reflex Sympathetic Dystrophy Syndrome Association of America. We are a national organization with over 2,000 members, in every State of the Union, and I am also speaking for the estimated 6 million to 10 million sufferers of this debilitating disease.
My mission is to request that you consider inclusion of this dread disease into the rolls of the Social Security Act. Reflex Sympathetic Dystrophy, which we'll call RSD from here in, is a debilitating disease that presents the following trauma. It was originally described in the 1850s by a Doctor Weir Mitchell while treating Civil War soldiers. Dr. Mitchell noticed that many were not responding to treatment following gunshot wounds. Even today, RSD is often misdiagnosed and many of its patients are accused of being fakes, as they suffer from excruciating pain.
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While medical advancements abound, RSD goes waiting for protocols, diagnoses, and treatment. While many RSD patients are diagnosed and treated and respond successfully, just as many go through the four stages of this disease and become dependent on the system. It is these fellow sufferers that I represent today.
RSD, a disease of the autonomic nervous system, is a significant cause of chronic pain. It can arise as a result of injury or illness, but can become a primary illness in itself. It is a poorly understood dysfunction of the nervous system and it usually occurs after surgery or injury. The injury may not be apparent, such as a heart attack, repetitive stress, or a minor fall. The most significant onset characteristic is the patient's experience of burning pain, swelling, and loss of motor function, far out of proportion to the physical findings. Skin changes, muscle spasms, tremor, or atrophy can all be present. The pain is severe, said to be the worst pain humans can endure. RSD impairs memory and concentration. Also, the pain does not respond to conventional medications.
A patient with advanced RSD cannot perform substantial gainful activity, including intellectual work, probably for the balance of their lives, and certainly for the 12 months required by the Social Security Act. An advanced RSD patient spends their day contemplating pain relief.
Our members have waited an average of two to three years to achieve benefits from Social Security, far too long, as most of these Americans do not have alternate income. Many RSD patients have lost their homes while waiting for benefits that they justly deserve. Any expediency to the process greatly helps these sufferers.
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I humbly implore you to give this your consideration. These patients are only asking for their just due. These are proud Americans, formerly self-sufficient.
Thank you, sir. Do you have any questions?
[The prepared statement of Francis Davis follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. I do.
Mr. Davis, if I understand you correctly, your testimony aims at making this disease eligible for Social Security disability, is that correct?
Mr. FRANCIS DAVIS. That's correct.
Mr. PORTER. The difficulty is that this subcommittee has jurisdiction over Social Security only to the extent of its administrative expenses appropriation. The subject matter of a disability claim would have to be addressed, I would assume—and the staff could correct me if I'm wrong—but addressed through Ways and Means, because the program is an entitlement. Therefore in our budget, while you'll see a line item for it, it would be there as a mandatory appropriation, the benefits themselves. So we really don't have jurisdiction over the subject matter. If you were talking about research, of course, we would, but not in the case of making this a recognized subject for disability benefits.
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Mr. FRANCIS DAVIS. I see. I understand.
Mr. PORTER. So I'm afraid you're also going to have to testify before Ways and Means.
Mr. FRANCIS DAVIS. No problem.
Mr. PORTER. 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]
Tuesday, February 3, 1998.
WITNESSES
BRENDA HURST
WILLIAM DAVIS, AMERICAN VOCATIONAL ASSOCIATION
Mr. PORTER. Brenda Hurst, president of the American Vocational Association, accompanied by William Davis, Chief Executive Officer, Pulsar Data Systems, Inc., testifying on behalf of the American Vocational Association.
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Ms. Hurst and Mr. Davis.
Ms. HURST. Good afternoon, Mr. Chairman. I am Brenda Hurst. I am president of the American Vocational Association, and Special Populations Coordinator at Dobyns-Bennett High School in Kingsport, Tennessee. On behalf of AVA's 38,000 members, thank you for allowing us to be here today.
To succeed in a technological workplace, students need academic and technical skills that are provided together through vocational-technical education. We serve high school students, post-secondary students, as well as welfare recipients and college graduates seeking the academic and technical skills they need to achieve their careers.
To serve our students better, AVA has established a National Business Education Partnership. We're working with such partners as Microsoft, McDonalds, General Motors, Ohio State University, to help ensure a highly skilled workforce and maintain a globally competitive economy.
We are so proud that one of our partners, Bill Davis of Pulsar Data Systems, is here with us today to discuss the importance of vocational education.
Federal support for vocational-technical education provides critical funding for program improvement at the local level. Therefore, AVA respectfully requests at least a 10 percent increase in funding for vocational-technical education.
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Thank you, and with your permission, I will turn the remainder of my time over to Mr. Davis.
Mr. WILLIAM DAVIS. Good afternoon, Mr. Chairman. It's an honor to be here today. I am founder, president, and CEO of Pulsar Data Systems, an information technology company headquartered in Lanham, Maryland, in Congressman Hoyer's district. Pulsar has 180 employees and has an additional office in Congressman Bonilla's home town of San Antonio, Texas. We have been recognized by USA Today as one of the top black-owned industrial services companies. We also have been recognized locally as one of the fastest growing companies in the D.C. area. In fact, we are now the fifth largest minority-owned company in the U.S.
The success of my business depends on a number of factors, but none so important as the quality of the workforce. Education is, in a very real sense, a business partner of mine. I want this to be a healthy and prosperous partnership for all involved.
What is being taught in schools must be relevant to opportunities in the workforce. We are working with AVA to meet the top challenges of a rapidly changing workplace and address the needs of students with varied career goals. Leadership is critical at this juncture because we have serious shortages of skilled workers in America. More than 190,000 IT jobs are unfilled today because of a lack of qualified applicants. We need software engineers with advanced degrees, but we also need technicians.
In many industries there are thousands of highly paid jobs for people with a combination of academics and technical skills. I applaud AVA support of policies that strengthen the academics taught in vocational-technical education. Watered-down courses will no longer suffice.
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At the same time, we must also strengthen the technical focus of these programs. Without technical skills, students will not be qualified for the jobs of today or tomorrow. For those who go straight to work after high school, this type of education could not be more important.
Our shortage of skilled workers is startling, yet it reveals incredible opportunities for today's youth if they have the right kind of education. Pulsar's future is tied directly to America's students, and we are continually looking for ways to help them create their own future success.
In partnership with AVA, Pulsar is working to provide the latest IT solutions to vocational-technical schools across the Nation. In return, Pulsar has established a scholarship fund for students and teachers. These scholarships will provide incentives for students to pursue the educational pathways needed to enter the IT field, and will provide teachers with the training that they need to deliver academic and technical skills to our future workforce.
This effort holds much promise, but we cannot do it alone. We hope other companies will join with us as this effort grows, and we hope that the Federal Government will recognize its continued role in supporting vocational-technical education. Congress should view this not as an expense, but rather as an investment.
On behalf of my company, and with a strong personal conviction, I urge you to support AVA's requested increase for vocational-technical education. This program sparks in countless students the drive to stay in school and pursue further learning. Vocational-technical education gives industry the key to our prosperity, competent and skilled workers, and it creates for our Nation its individual citizens' greater hope for a bright future.
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Again, thank you for this unique opportunity. I also want to thank AVA for sharing its few moments of time here with me today. I would also be happy to answer any questions.
[The prepared statements of Brenda Hurst and William W. Davis, Sr., follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. My question is, how come you don't have a facility in my district? [Laughter.]
Mr. WILLIAM DAVIS. We do work in Chicago with a minority-owned company, Nexus Unlimited.
Mr. PORTER. We would welcome you.
This is a question for either one of you or both. Is there overlap between vocational education and school-to-work programs?
Ms. HURST. There should not be. I would not sit here and tell you what every school district is doing. If the school-to-work program is operating as Congress had intended it to operate across our country, there should be no overlap of the program.
Mr. PORTER. Okay. Where do they leave off and you take up, or vice versa?
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Ms. HURST. In most school districts I think we will find that the school-to-work programs, school-to-career, education edge, whatever school districts are preferring to call their program, it is across the board for all K–12 students. It is exploratory. There's a lot of job-shadowing. It's mentoring. It's an awareness program for all students. It's not a dictatorial program; neither is vocational education. There is a belief among those that in a school-to-work program people are being told what careers they should go into for the remainder of their lives. For example, yesterday was National Job Shadowing Day. Many students across this country had the opportunity to select from a number of employers, a number of professions, and go into the business with a professional on an exploratory basis, in a limited amount of time, to follow them around and to shadow them for that day, to see what their jobs are like.
So it's really an awareness program.
Mr. PORTER. So it's more of a career awareness, opportunity awareness kind of thing?
Ms. HURST. Yes, for all K–12.
Mr. PORTER. Right. Right. Okay.
Ms. HURST. And even in the elementary schools you may have a program where you're studying what a particular bacteria is, and then a teacher would get into exploring what kind of jobs you would have available in this country if this is what you were doing, what courses you would have to take, what academics would you need, what skills, how much college work, etc.
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Mr. PORTER. This morning we had Lynne Cheney in to testify, the wife of our former colleague, Dick Cheney, who herself has a very exemplary public career. She testified on behalf of the American Enterprise Institute, Mr. Davis, that we are tending to push kids way too early into career paths, and not giving them the kind of broad education that makes them happier human beings in the long term, better citizens, and the like.
Do you have any comment on that?
Mr. WILLIAM DAVIS. My only comment would be that I have five children; my youngest is 23. I would like to think that they've had choices as opposed to being pushed. They've been able to look at alternatives, not because of anything that I have or don't have, but more in line with how they themselves are influenced by peers and by others in terms of what's available.
So I don't think we push too early. I think what we should be doing more of is giving the kids and students—we do a lot in K–12 from a standpoint of laboratories and the like, computer labs, and installing them and supporting them—I think they should have the opportunity to see what's available so that as they start making those decisions, whether they want to be a fireman or want to be a computer expert, they should have that choice earlier to really start pursuing it earlier, if that's what they choose, or at least to see what's available.
Mr. PORTER. I want to thank you both very much for coming to testify. Thank you so much. I learned a lot.
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Tuesday, February 3, 1998.
WITNESS
PHILIP FURMANSKI, NEW YORK UNIVERSITY
Mr. PORTER. Dr. Philip Furmanski, Dean, Faculty of Arts and Science, Chairman and Professor, Department of Biology, New York University, testifying on behalf of the university.
Dr. Furmanski.
Mr. FURMANSKI. Thank you, Mr. Chairman. My name is Philip Furmanski and I am speaking on behalf of New York University as Dean of its Faculty of Arts and Science. I appreciate this opportunity to discuss a scientific project which addresses this committee's programmatic and research priorities. We applaud the committee's emphasis in last year's appropriations measure for the Federal Government to support ''research in the area of brain development, mechanisms that underlie learning and memory, the acquisition and storage of information in the nervous system, and the neural processes underlying emotional memories as they relate to intellectual development and cognitive growth.''
We believe that such a national investment into research on the mind and brain will repay itself many times over. To help implement the committee's goal, NYU is undertaking to establish a Center for Cognition, Learning, Emotion and Memory. This center will conduct research along a new paradigm that will push the frontiers of understanding of how the brain develops and functions, and how aging and brain disorders can erode our ability to learn, think, remember, and mature as productive members of family and society.
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In addition, the center will help train the next generation of interdisciplinary brain scientists.
To establish this interdisciplinary center, NYU is seeking support to expand research programs, attract investigators from the disparate disciplines that are required, and provide the technical resources that are necessary to create a premiere world-class scientific enterprise.
As you know, traditional funding sources cannot underwrite the establishment of a new cross-disciplinary area of scientific study, particularly one that includes research and teaching and reaches across fields as diverse as biomedicine, psychology, education, computer science, and cognitive science.
The research in this center will have enormous implications for education, health care, and job training. As one example, research on attention and retention will be useful in designing programs for early childhood intervention. The center's research will help us better understand how children learn at different stages with different cognitive styles; how parents and teachers can accommodate these styles; and how educational technology can be harnessed to stimulate interest in increased retention.
The research need is clear. Many educational reforms are being introduced as we speak without the advantage of an understanding of some fundamental processes that lead to learning.
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Second, our research will investigate how memory is altered by aging and by diseases like Alzheimer's, and how biological malfunctions in the educational and emotional system can cause disorders like phobias, panic attacks, and post-traumatic stress. Research into the biology of fear will help us understand the origin of our emotions, how emotional conditions arise, why are they so hard to control, and ultimately how we can prevent and treat emotional disorders.
Finally, research on cognition will impact adult learning and job training programs and help rationalize the way we train new workers or retrain workers in emerging new technologies.
New York University is well positioned to create and operate this major national cross-disciplinary research and training center. The largest private university in the United States, with over 49,000 students and 13 schools, NYU has outstanding researchers and well-established strengths in neurobiology, cognitive science, neuromagnetism, behavioral neuroscience, educational psychology, mathematical modeling, and computer simulation. With these strengths, NYU can create a distinctive center that will produce a new understanding of the brain and new ways of using that knowledge to improve human health and welfare. Our faculty are already widely recognized for their research on memory, learning, motivation, and language acquisition, and NYU is internationally known for its studies in vision, a key input to learning.
NYU is the leader in new studies on the biological basis of emotion. These studies have important implications for learning and memory and control certain harmful emotional states.
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As we complete the ''decade of the brain,'' NYU, through this new center, is poised for leadership in accomplishing the aims of this important initiative and the goals central to national priorities. I believe that we are in a special situation among universities to bring these strengths in so many varied disciplines together to attack these crucial issues, and then to disseminate the results for the benefit of the American people.
Mr. Chairman, this concludes my testimony. I thank you for the opportunity to appear before you today. Also let me add my appreciation as a researcher and an NIH grantee on behalf of all the American people for your leadership in biomedicine in this country.
[The prepared statement of Philip Furmanski follows:]
"The Official Committee record contains additional material here."
Mr. PORTER. Dr. Furmanski, let me thank you for coming to testify on such an important subject.
You might be aware that we had Dr. John Sarnow of the New York University Medical Center up to testify last fall, a special panel that we convened on the ''mind-body connection,'' for want of a better term, which is not the subject that you're testifying about, but related in a way. He did an excellent job in representing the university, as you have done today, so we thank both of you. Thank you for being with us.
Mr. FURMANSKI. Thank you very much.
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Tuesday, February 3, 1998.
WITNESS
DR. JULES HIRSCH, M.D., AMERICAN SOCIETY FOR CLINICAL NUTRITION
Mr. PORTER. Dr. Jules Hirsch, M.D., Past President and Public Affairs Committee Member, Rockefeller University, New York, testifying on behalf of the American Society for Clinical Nutrition.
Dr. Hirsch, good to see you.
Dr. HIRSCH. Thank you very much, Mr. Porter, for the privilege of appearing here this afternoon. As you have stated, I am Jules Hirsch, a research physician and professor at Rockefeller University. For a number of years I served as the physician in chief of the hospital at the university, and today I represent the American Society for Clinical Nutrition.
I must say very feelingfully and completely truthfully at the outset that there isn't a member of this large American Society of Clinical Nutrition that we have that isn't extraordinarily grateful to you personally for your championship of the NIH over what we considered were going to be very lean years, and indeed were lean, but nevertheless were sufficiently well-supported by you and your colleagues to keep the scientific establishment going.
We have a very unusual mission. It's the mission of expanding nutritional sciences and the understanding of nutrition sufficiently to make this useful as a technique of prevention of disease, health promotion, and in many instances, treatment of disease. But we have a problem, and what I want to tell you about very briefly this afternoon is the specific problem that we have. It is more fully documented in the written testimony that you will receive, but let me do this in just a very brief fashion.
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Let me begin by pointing out something that we all know but maybe we should emphasize. We live in a very remarkable moment in the history of biologic science. In great measure this comes about because of what NIH and the support of this committee and the previous committee individuals have supported. We now know the blueprint for the structure of living cells, encoded in DNA, and that single piece of information has put biologic science on a footing that it has never had in the past. But what is happening with this is somewhat reminiscent of what goes on with computer science and computer information. Things are moving so very, very quickly that from week to week new and extraordinary events are occurring in how this information is processed and contained within the cell. It began some years ago by getting chunks of the pieces of information, the genes, and understanding their aberrations and relationship to specific diseases by studying people with the diseases, and normal members of their own pedigree, and putting this together.
Now a really astonishing thing is just on the horizon, and that is the possibility that on something akin to a computer chip we will have the entire human genome—not of all people, but specifically of each individual, so that as though you were going to the physician to get a Smack-20 and find out what your blood sugar is and your sodium and this and that, now you're going to get a piece of information in the very near future of your entire genome, the total blueprint with which you were born that sets the stage for human individuality.
Now, we know that these genomes are very different from person to person and, except with identical twins, they are what makes for biological variability. What then happens is that this genome is expressed over time by virtue of the chemical environment in which we live that makes us, finally, the individuals that we are.
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Now, the most important aspect of that environment, and in its chemistry, is nutrition, because the materials that we eat bathe these cells and guide the pathway toward growth and development.
So to put this wonderful new information of molecular genetics to work so as to optimize health and to prevent disease, we need as much understanding of the variability of physiologic and biochemical processes and how they respond to illness as we do to the nucleotide codes. In other words, we are born with a blueprint, but that is not ultimate destiny. We are not imprisoned in that forever. There is the opportunity of growth and development, and we must understand how this works, and nutrition figures very prominently in all of this.
What we need now are scientists who study subsets of people who are either alike or not like each other in terms of physiology, susceptibility to illness, response to foodstuffs, so we learn not only what is unique about their DNA but, most importantly, contrariwise, why—with a given DNA constitution—they turned out so differently from each other.
So at last we are beginning to think of a synthesis, an integrated biology, in which DNA structure is not the ultimate and exclusive determinant force which places us in an inevitable chain of development and disease or health, but rather a rich source of chemical understanding to be tapped and understood and known as to what makes us the individuals that we are.
Regrettably, and here is the problem, as this new information rushes headlong into these deep levels of comprehension, the understanding of man in terms of response to environment and in terms of susceptibility to disease is not as much developed as molecular genetics. It is very likely that diseases such as diabetes and cancer, which have genetic determinants, may not be the result of a single gene defect, but rather very subtle alterations in the functioning of many genes, then acted upon by our nutritional environment.
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We have a scarcity——
Mr. PORTER. Dr. Hirsch, I am sorry to have to interrupt. I have a meeting I must go to at 4:00 o'clock and I'm going to ask Mr. Dickey to take the chair, and then you can proceed.
Dr. HIRSCH. Thank you.
Here, Mr. Dickey, is where our problem is. We have a scarcity of the clinical scientists who can help us understand disease and the operation of the body at this level of integration. Such scientists must, on the one hand, be able to reach back and make use of the fundamental molecular genetic map that exists in each individual, but also must include research physicians who can evaluate the entire organism for the ultimate environmental and nutritional interactions that create an illness or a wellness.
The ranks of these clinical investigators have been decimated at NIH and across the Nation. The reason for this is that our brightest young physicians are driven, on the one hand, into the depths of molecular genetics, or on the other hand, into the all-important delivery of health care. And this middle ground of clinical research is disappearing.
Often we are confounded by newspaper reports of ''eat fat,'' ''don't eat fat,'' ''more cholesterol,'' ''less cholesterol.'' The public gets totally confused. These reports are all true; they are basically correct. The issue is that they are a single recipe, a single prescription for all human beings, and human beings are extraordinarily different, and it is the business of nutrition and clinical nutritional science to give us the prescriptions for each of us, person by person, from the understanding that comes at this kind of level.
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Mr. DICKEY [assuming chair]. Dr. Hirsch, let me ask you a question.
Would you concede that good health could be the object of monetary incentives?
Dr. HIRSCH. Yes.
Mr. DICKEY. Have you ever seen it work, or seen it being applied?
Dr. HIRSCH. That good health can—can you give me a——
Mr. DICKEY. Well, let's just say—you're talking about nutrition, but let's just say we're talking about the loss of weight. You can do that through proper nutrition. Have you ever seen a program that paid people to lose weight?
Dr. HIRSCH. Yes. As a matter of fact, there have been such programs, with relatively minor degrees of success, I must say, over the long run, the reason being that a lot of the fundamental biology of obesity has not been that well understood. It is this kind of nutritional science that can make the difference for it.
But in the short run, there have been programs—engineered, for example, at the University of Pennsylvania and some other places that come to mind—in which, at least in the short run, it works.
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Mr. DICKEY. Okay, let me ask it another way, then. How can we encourage people to want to take better care of themselves?
Dr. HIRSCH. By understanding the ways in which they have come to do a bad job, because the wrong nutrition that we often practice comes about by virtue of developmental and biologic events. So for example, children, very early in their development, get set up into certain patterns of food intake and behavior that become increasingly difficult to deviate from. So what we need is understanding of how people have come this way. We've become very disenchanted by lecturing to people about nutrition and trying to have them change their diets. Although some of this has happened, all too little has happened.
So more biologic understanding is required. When I began in the obesity research area, which is my area, it was thought to be exclusively a psychological personal matter. We now know that that's not true. There are fundamental and important biologic determinants that are also at work in this about which we need to know even more.
Mr. DICKEY. I think your time has expired.
Dr. HIRSCH. My last request is that—we have the mechanisms within NIH for supporting this, but what we need is support specifically of the clinical nutrition research units which tie this information together. And what our organization requests is your attention to the further funding of these clinical nutrition research units at NIH, and the full details are in the testimony.
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Mr. DICKEY. Thank you, Dr. Hirsch.
Could you give your office number to that lady right there, Ms. Galloway, please?
Dr. HIRSCH. I'd be delighted to.
Mr. DICKEY. All right. Thank you very much for the time and your commitment.
[The prepared statement of Jules Hirsch, M.D., follows:]
"The Official Committee record contains additional material here."
Tuesday, February 3, 1998.
WITNESS
DR. KENNETH M. VISTE, JR., M.D., AMERICAN ACADEMY OF NEUROLOGY
Mr. DICKEY. Next we have Dr. Kenneth Viste, Jr., Immediate Past President, American Academy of Neurology, from Oshkosh, Wisconsin. Did you fly in here?
Dr. VISTE. Yes, right down the road from Green Bay.
Mr. DICKEY. I've been to Oshkosh. My neck was constantly looking up because of the flights coming in.
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Dr. VISTE. I live right down the runway from it.
Mr. DICKEY. Do you really?
Dr. VISTE. Yes.
Mr. DICKEY. It's unbelievable.
The American Academy of Neurology. You have five minutes.
Dr. VISTE. Thank you very much, Mr. Dickey. It's a pleasure being here today. My name is Ken Viste, Immediate Past President of the Academy of Neurology, Past Chair of Legislation for the AMA, and I currently chair the HCFA Practicing Physicians Advisory Council. I am testifying today on behalf of the Academy of Neurology, a medical and scientific society representing some 15,000 neurologists and neuroscientists, and on behalf of patients with neurologic conditions.
My testimony will focus on needs in the areas of research related to the brain and conditions involving the brain.
It is estimated that at least 50 million individuals suffer from some disorder relating to the brain. I shall not go into all the numbers, but suffice it to say it is a very expensive proposition, both in terms of monetary means, as well as the human impact.
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In my training at Northwestern, neurology was originally thought to be a specialty where it was ''diagnose, and adios.'' We really could do a very good job of diagnosing people—not as good as now, perhaps—but we really had very little in the way of treatment.
Fortunately, this has all changed. In the Nation, particularly those who practice neurology have the Congress and particularly this subcommittee and the NIH to thank for this. There are now many useful and exciting developments related to the treatment of neurologic conditions. Last year, Dr. Zach Hall of NINDS spoke of these breakthroughs in his testimony here.
An expanded research budget for fiscal year 1999 will assist in carrying forward these clinical initiatives.
Mr. DICKEY. Excuse me. What is the most common diagnosis in your field?
Dr. VISTE. Headache.
Mr. DICKEY. Interesting. Thank you.
Dr. VISTE. The Academy of Neurology would hope that the NIH budget can be doubled in the next five years. For fiscal year 1999 we would like to see a 15 percent increase for NIH as a whole. In particular, we recommend that the budget of NINDS and the budget for brain research through NIH double over the next five years and be increased to 15 percent in fiscal year 1999. We believe this expansion should emphasize clinical research, given the many opportunities that now exist.
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There should also be a commensurate increase in the research management and support budget of NINDS to enable it to effectively manage its initiatives.
Within these increases there are a number of specific initiatives we endorse.
First, we support the recently announced Alzheimer's Disease Prevention Initiative, which calls for an increase in research funding there of some $100 million in fiscal year 1999. A principal focus of the initiative will be on multicenter clinical research and trials.
Secondly, we support initiatives included in the Morris Udall legislation on Parkinson's Disease.
Third, we support the initiative begun in 1998 to expand the research, prevention, and services in brain injury, including clinical research on treatment and rehabilitation related to brain injury.
Finally, stroke research and education is a major priority for our academy and is an area of dramatic achievement. We support the Heart and Stroke Coalition recommendations for stroke research expansion.
As far as stroke research goes, I think you are aware of a new breakthrough in this past year, t-PA, a clot-buster, something that has been very important in the treatment of heart attacks, but the advent of reversing strokes is now upon us. This is largely through efforts and research of NINDS. NINDS has launched a consortium of all the major interest groups in really trying to bring and elevate, through public education and professional education, brain attack to the same level as heart attack, and I think we applaud the efforts of NINDS. We certainly believe they need the resources to continue this effort, to bring the fruits of this very excellent research and trials to general use in the hopes of decreasing the burden on society of stroke. Certainly we need to do a great deal more in this area, given the 400,000 people a year that are affected by stroke.
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In terms of Alzheimer's Disease, there is evidence that Vitamin E, or even ibuprofen, may help people not get Alzheimer's Disease.
Mr. DICKEY. In what quantities?
Dr. VISTE. Probably 400 milligrams, four times a day.
Mr. DICKEY. Of each?
Dr. VISTE. No, no, of ibuprofen. Of Vitamin E, 600 units a couple times a day.
Mr. DICKEY. I forgot what you just said. Say it again.
Tell me this. Are there any side effects?
Dr. VISTE. The ibuprofen could give you a gastric ulcer.
Mr. DICKEY. Okay.
Dr. VISTE. Vitamin E, probably not, and it's particularly good for potency, as well. That's the main use.
Mr. DICKEY. Please. This is Washington. We can't talk about those things anymore. [Laughter.]
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Dr. VISTE. Okay. In terms of Parkinson's Disease, we support the Morris Udall initiatives. Certainly, scientists in the last year have discovered the gene that causes some forms of Parkinson's Disease, and certainly we support the efforts of the Parkinson's Disease organizations in establishing centers of expertise in this area.
Another condition is multiple sclerosis. There is growing evidence that there are viral triggers that set off multiple sclerosis. We support the National Multiple Sclerosis Society in recommending increased research funding in these areas of opportunity for this disease.
Likewise, for epilepsy, there is a great need, looking at seizures in childhood, special problems with epilepsy among women, and anti-epilepsy drug development.
Likewise, in traumatic brain injury, there is a great deal of opportunity to decrease the burden of traumatic brain and spinal cord injury with appropriate clinical trials.
In summary, we believe that there should be a priority at this time for clinical research, that an increased emphasis in this area really offers great opportunities to improve the health of this country.
Concomitant with this, there are two new initiatives that I should really call attention to: a clinical trial pilot grant program, and a clinical trial planning grant program. In other words, if we're going to move into this area, it is incumbent that we have programs to help people go about doing it correctly so as to marshall and use our monies as effectively as we can.
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I thank you for your attention and suggestions, and would answer any questions you might have.
[The prepared statement of Kenneth Viste, Jr., M.D., follows:]
"The Official Committee record contains additional material here."
Mr. DICKEY. I've asked them all. Thank you, Dr. Viste. Good job.
Tuesday, February 3, 1998.
WITNESS
DAVID RHODES, ASSOCIATION OF INDEPENDENT COLLEGES OF ART AND DESIGN
Mr. DICKEY. Next we have Dr. David Rhodes, president of the School of Visual Arts, Association of Independent Colleges of Art and Design.
Mr. RHODES. Mr. Dickey, thank you for this opportunity to testify.
Mr. DICKEY. Is it Dr. Rhodes or Mr. Rhodes?
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Mr. RHODES. Just David.
Mr. DICKEY. Hi, David.
Mr. RHODES. My name is David Rhodes and I'm president of the School of Visual Arts in New York City. I am before you today on behalf of the Association of Independent Colleges of Art and Design, AICAD, which is a consortium of 32 institutions that educate more than 30,000 students annually at the collegiate level from all 50 States and more than 70 foreign countries.
We believe that support for art and design education is a sound investment in the quality of American life.
It is a privilege to appear before the subcommittee to discuss support for arts education for children in public schools. In 1994, Congress passed and the President signed the Improving America's Schools Act of 1994. Under Title X, Part D, Arts in Education, the program authorized a program called ''Cultural Partnerships for At-Risk Children and Youth.'' AICAD was proud to be associated with the legislation, which encourages community involvement by colleges and other cultural institutions to promote the arts for children in poverty-stricken neighborhoods. AICAD played a major role in the adoption of this particular provision.
In 1996, the President's Committee on the Arts and the Humanities published a report entitled ''Coming Up Taller'' in which they documented the importance of arts programs to the intellectual development of children, especially for children in high-risk neighborhoods with few cultural opportunities. The report found that ''Community arts and humanities programs provide crucial building blocks for children's healthy development.''
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A study by the Port Authority of New York and New Jersey found that the arts and other cultural activities account for at least $9.8 billion a year of economic activity in the New York metropolitan area, and directly and indirectly support more than 107,000 jobs. While the arts experienced a boom during the 1980s, the subsequent bust in the 1990s widened the gap between the cultural haves and have-nots.
The Federal Government has invested in elementary and secondary education when it has been in the perceived national interest to do so. For more than 30 years it has supported those groups that have been historically unserved or underserved, the poor, the disabled, and those with limited English proficiency. As the President's committee has demonstrated, the arts have the ability to help children overcome these initial disadvantages.
In addition, many children don't do well in the traditional classroom setting, where rote learning is the key to success. Without access to the arts, these young people are being short-changed. The real tragedy is that we're failing to take note of what art can do for children by enhancing their creative ability to grasp abstract concepts. In addition, we are failing to equip our children for economic opportunities where the economy is expanding and real jobs exist. This is especially true in New York, but it is also the case in Philadelphia, Baltimore, Chicago, L.A., D.C., and almost any major urban area where arts-related jobs are plentiful and positions for those with a serious arts education often remain unfilled.
Therefore we ask that the subcommittee fund the Cultural Partnerships Program and other programs which encourage colleges and other cultural institutions to work with at-risk children through the public schools.
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Mr. DICKEY. Excuse me. What connection does this appropriation have with the National Endowment for the Arts?
Mr. RHODES. None. The National Endowment for the Arts has very little to do with education to begin with, although they have a program that was enacted by Congress for them to do exactly that. That program was never funded. They have very little programmatic activity within the public schools. This would be separate from and clearly in addition to—and actually, it doesn't appear that the Endowment's mission covers this activity with respect to public schools.
Mr. DICKEY. Okay. Thank you.
Mr. RHODES. As you know, this program also lends itself to distance learning partnerships for communities with sparse cultural resources, which makes it appropriate for rural communities also. Thus these programs, if funded, can enhance the opportunities for students to study the arts with all the attendant benefits, but to do so within a technological framework which will lead to a high degree of computer literacy and Internet sophistication.
I would like to thank you for this opportunity to address you and I would be pleased to entertain any questions.
[The prepared statement of David Rhodes follows:]
"The Official Committee record contains additional material here."
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Mr. DICKEY. Who censors what the kids receive, as far as education is concerned?
Mr. RHODES. I'm sorry?
Mr. DICKEY. Is there any censorship that goes on with what the kids receive in their education in the visual arts?
Mr. RHODES. Yes. Good taste. In other words, what the kids receive has to be age-appropriate——
Mr. DICKEY. Who decides that?
Mr. RHODES. The teachers, generally. The teachers and parents. It's a local decision.
Mr. DICKEY. Okay. Now, is this the sort of thing where they are actually doing the work, where they are drawing things and painting things? Or are paintings brought to them and explained?
Mr. RHODES. We would urge that they actually do the drawing and painting, they actually do the exploration, rather than having a static representation of a painting of some note that is then declaimed upon by someone who is an aficionado or a historian.
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We believe that to do this they've got to get a little messy, maybe, and from that mess we think something good comes. By way of example, I'm sure you're familiar with cuisinart sticks?
Mr. DICKEY. No. I'm from Arkansas.
Mr. RHODES. They're small sticks that are used to teach mathematics.
Mr. DICKEY. Are you saying cuisinart?
Mr. RHODES. Yes, cuisinart. They are small sticks that are generally in units of one to ten, and they are used to teach mathematics to preschool children. And that activity, that hands-on nature, is what seems to work. I know it did wonders for my daughter when she was three.
Mr. DICKEY. Well, just in a nutshell and as your final statement, what is it that the visual arts give to our kids that they need?
Mr. RHODES. It gives them a sense of being able to create and master their own sets of problems, which are structured in such ways that they blend in with the regular curriculum, so that in fact the overall achievement is enhanced, and at the same time there is a sense of mastery that is gained rather more quickly than sometimes occurs in a more traditional setting.
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By way of example, in the Baltimore city high school system there is a specialized English magnet school, a specialized mathematics magnet school, and a specialized art magnet school. The board scores, as you might expect, in the city are highest in English in the English school, and highest in math in the math school. But the second highest in both categories is at the art school.
Mr. DICKEY. Interesting. Is that because of the confidence they receive?
Mr. RHODES. That's a large part of it.
Mr. DICKEY. The fulfillment of expression?
Mr. RHODES. They've got something that they really enjoy doing, so they're there every day. I run a program for at-risk kids that is funded by the State of New York, and one year, I'd like to say, I had better than 100 percent attendance because I had two kids that were expelled from the school that I was working with, attending that program in the summers every day. They were behavior problems in school, but not in my program.
Mr. DICKEY. Well, I saw that in the headlines of the New York Times. You always hear the good things, don't you, in the headlines?
Mr. RHODES. We try.
Mr. DICKEY. Thank you, sir.
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Mr. RHODES. Thank you.
[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]
Tuesday, February 3, 1998.
WITNESS
MICHAEL S. LANGAN, NATIONAL ORGANIZATION FOR RARE DISORDERS, INC.
Mr. DICKEY. Next we have Mr. Michael Langan, Vice President of Public Policy and Government Relations, National Organization for Rare Disorders, Inc.
How are you doing?
Mr. LANGAN. I'm doing just fine. How are you today, sir?
Mr. DICKEY. You have five minutes, at least.
Mr. LANGAN. Well, thank you. I believe, if I'm not mistaken, I'm the last person on this list of witnesses today.
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Mr. DICKEY. That's correct.
Mr. LANGAN. For that reason, since I know it's been a long afternoon, you have a copy of my written statement for the record, so I will try to work from my notes.
I will basically say to you, sir, we are very delighted to be here, even though we're last on the witness list, but we're very thankful. My name is Michael Langan. I'm the Vice President of Public Policy for the National Organization for Rare Disorders. I also happen to serve on the executive committee of the ad hoc group for medical research funding.
Interestingly, the National Organization for Rare Disorders is actually a voluntary health agency, a large federation. We have more than 140 patient advocacy groups as our members. We represent people with rare genetic diseases. It has been estimated that there are more than 20 million Americans with one of over 5,000 rare—usually genetic—disorders.
These are often known as ''orphan diseases.'' Treatments that are developed, often through the NIH and developed by private pharmaceutical companies or biotechnology companies, are known as ''orphan drugs.'' This issue was addressed by Congress in the early 1980s, looking at it really from a private sector standpoint, that basically it was very difficult for private sector companies to justify a huge investment in studying these treatments for these rare, very small patient populations, and they developed the Orphan Drug Act to give some incentives to the private sector. It has been extremely successful. We have drugs that are approved for safety and effectiveness and out on the market today that wouldn't have existed 10 or 20 years ago.
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Now, Congress did a wonderful job in addressing the needs and sometimes the pitfalls of the private sector market. But throughout the history of the NIH, the National Institutes of Health has been a real place that many people with rare diseases could call home. This is where medicine is taken care of, regardless of whether there's a potential for profit down the road.
But what we've seen, unfortunately, is that very often these diseases still tend to fall through the cracks at NIH. A rare disease, such as Lesch-Nyhan Syndrome, or something called Leukodystrophy, which is commonly known as the ''bubble boy disease,'' some of these conditions may only affect 100 or 200 or 300 patients in the entire country. What we found is that unless there is better coordination at NIH, then very often these researchers who are interested in studying these diseases don't communicate with one another. They don't know if there are any resources out there. They hear all the time that we spend more money on cancer or on Parkinson's or on AIDS, and very often they become discouraged. They don't know that there might be some money available through the NIH, somewhere, somehow, to address the needs of these very small patient populations.
The gentleman before me, the neurologist, mentioned a number of neurological diseases, Parkinson's Disease, Multiple Sclerosis, and others. There are a lot of neurological disorders, too, that exist out there, hundreds, where many people up here on Capitol Hill don't know about them. Very often a lot of people at NIH don't even know about them.
What we are here today for is to ask you and to ask the subcommittee and the full committee to really address these needs through looking at some of the structure and the funding of the structure at NIH, namely, the Office for Rare Diseases. You may be familiar that administratively, there is the Office of AIDS Research, or the Office of Women's Health Initiative, and some other offices that try to coordinate research. This is an office that has been underfunded for many, many years. We are asking this subcommittee to fund it at a level of $10 million next year. Currently it has a budget below $2 million.
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But it has done wonderful work, and I would like to mention three things that this office does, and can do in the future even better.
One is to coordinate a number of scientific workshops on these rare diseases. Basically——
Mr. DICKEY. You want it to go from $2 million to $10 million?
Mr. LANGAN. Yes, sir. This has been a sorely underfunded program at NIH, and that is what we are recommending as the patient advocacy community. We recognize that it is hard to achieve.
Basically, some of the activities of this office that should continue and be enhanced are holding workshops, these scientific seminars, where they actually bring the researchers together. So often they can't find patients to even enroll in clinical trials.
Secondly is to continue the creation of a Rare Disease Clinical Trial Data Base. I got a call just the other day from a woman—I believe she may live in your district, in fact—a woman in El Dorado, Arkansas, who has Addison's Disease. No one, really, in the State of Arkansas, doctors, practitioners, have any idea what Addison's Disease is. It's a rare and serious disease, sometimes fatal if it's not treated. It's an intestinal condition.
I'll try to move on real quickly here.
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That's one example; they don't know whether there's even any investigational treatment available from NIH. That's why the role that this office plays is crucially important.
Mr. DICKEY. She called you and not the doctor?
Mr. LANGAN. She called me directly. I don't know if she got on the Internet. She found our telephone number. She basically called our organization to look for some help and some direction to turn in. We definitely headed her in the right direction through this data base.
Mr. DICKEY. Can you tell her—it would seem like that it would be an invasion of privacy for me to ask her name and then to call her. It might be offensive. Could you do me a favor and ask her to call me, if she would like to?
Mr. LANGAN. I sure will.
Mr. DICKEY. She'll know how to get hold of me.
Mr. LANGAN. Thank you. I'll do that, sir.
I think, just to close on one or two points here, I would just like to say that we do join with the ad hoc group for medical research funding and many other groups in advocating for a 15 percent increase in the overall budget of NIH. We feel that NIH is truly a place that rare orphan diseases can indeed call home.
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So thank you. If you have any questions, I'd be happy to answer them.
[The prepared statement of Michael S. Langan follows:]
"The Official Committee record contains additional material here."
Mr. DICKEY. Thank you. It's quite creative of you to bring up El Dorado, Arkansas. [Laughter.]
Mr. LANGAN. I just thought about that, actually.
Mr. DICKEY. It's a pretty good move.
Mr. LANGAN. Thank you, sir.
Mr. DICKEY. Thank you. Good job.
The subcommittee stands adjourned until 10:00 o'clock tomorrow morning.