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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