[House Hearing, 105 Congress] [From the U.S. Government Publishing Office]DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR 1998 ======================================================================== HEARINGS BEFORE A SUBCOMMITTEE OF THE COMMITTEE ON APPROPRIATIONS HOUSE OF REPRESENTATIVES ONE HUNDRED FIFTH CONGRESS FIRST SESSION ________ SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES JOHN EDWARD PORTER, Illinois, Chairman C. W. BILL YOUNG, Florida DAVID R. OBEY, Wisconsin HENRY BONILLA, Texas LOUIS STOKES, Ohio ERNEST J. ISTOOK, Jr., Oklahoma STENY H. HOYER, Maryland DAN MILLER, Florida NANCY PELOSI, California JAY DICKEY, Arkansas NITA M. LOWEY, New York ROGER F. WICKER, Mississippi ROSA L. DeLAURO, Connecticut ANNE M. NORTHUP, Kentucky NOTE: Under Committee Rules, Mr. Livingston, as Chairman of the Full Committee, and Mr. Obey, as Ranking Minority Member of the Full Committee, are authorized to sit as Members of all Subcommittees. S. Anthony McCann, Robert L. Knisely, Susan E. Quantius, Michael K. Myers, and Francine Mack, Subcommittee Staff ________ PART 7A (Pages 1-1567) TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND ORGANIZATIONS ________ U.S. GOVERNMENT PRINTING OFFICE 41-305 O WASHINGTON : 1997 ------------------------------------------------------------------------ For sale by the U.S. Government Printing Office Superintendent of Documents, Congressional Sales Office, Washington, DC 20402 COMMITTEE ON APPROPRIATIONS BOB LIVINGSTON, Louisiana, Chairman JOSEPH M. McDADE, Pennsylvania DAVID R. OBEY, Wisconsin C. W. BILL YOUNG, Florida SIDNEY R. YATES, Illinois RALPH REGULA, Ohio LOUIS STOKES, Ohio JERRY LEWIS, California JOHN P. MURTHA, Pennsylvania JOHN EDWARD PORTER, Illinois NORMAN D. DICKS, Washington HAROLD ROGERS, Kentucky MARTIN OLAV SABO, Minnesota JOE SKEEN, New Mexico JULIAN C. DIXON, California FRANK R. WOLF, Virginia VIC FAZIO, California TOM DeLAY, Texas W. G. (BILL) HEFNER, North Carolina JIM KOLBE, Arizona STENY H. HOYER, Maryland RON PACKARD, California ALAN B. MOLLOHAN, West Virginia SONNY CALLAHAN, Alabama MARCY KAPTUR, Ohio JAMES T. WALSH, New York DAVID E. SKAGGS, Colorado CHARLES H. TAYLOR, North Carolina NANCY PELOSI, California DAVID L. HOBSON, Ohio PETER J. VISCLOSKY, Indiana ERNEST J. ISTOOK, Jr., Oklahoma THOMAS M. FOGLIETTA, Pennsylvania HENRY BONILLA, Texas ESTEBAN EDWARD TORRES, California JOE KNOLLENBERG, Michigan NITA M. LOWEY, New York DAN MILLER, Florida JOSE E. SERRANO, New York JAY DICKEY, Arkansas ROSA L. DeLAURO, Connecticut JACK KINGSTON, Georgia JAMES P. MORAN, Virginia MIKE PARKER, Mississippi JOHN W. OLVER, Massachusetts RODNEY P. FRELINGHUYSEN, New Jersey ED PASTOR, Arizona ROGER F. WICKER, Mississippi CARRIE P. MEEK, Florida MICHAEL P. FORBES, New York DAVID E. PRICE, North Carolina GEORGE R. NETHERCUTT, Jr., Washington CHET EDWARDS, Texas MARK W. NEUMANN, Wisconsin RANDY ``DUKE'' CUNNINGHAM, California TODD TIAHRT, Kansas ZACH WAMP, Tennessee TOM LATHAM, Iowa ANNE M. NORTHUP, Kentucky ROBERT B. ADERHOLT, Alabama James W. Dyer, Clerk and Staff Director DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR 1998 ---------- TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND ORGANIZATIONS ---------- Tuesday, April 15, 1997. WITNESS KENNETH I. BERNS, M.D., AD HOC GROUP FOR MEDICAL RESEARCH FUNDING Mr. Miller [assuming Chair]. The subcommittee hearing will begin. This is the first day of our public witness hearing schedule. Mr. Porter, the chairman of the subcommittee, has a health problem of his own with a disk problem. So Mr. Porter is unfortunately unable to actively participate in the meeting and has asked me to chair the meeting this morning. I am glad that Congresswoman Pelosi from California is with us this morning. So we will begin, and we will ask the witnesses to hold to the five minute rule. We have to hold to a five minute rule up here too, so we would appreciate it if you could, and then we will be able to proceed along. First with us this morning is Dr. Berns. If you would proceed. Dr. Berns. Thank you. Good morning. My name is Kenneth Berns and I am the Chairman and Professor of Microbiology at Cornell University Medical College. This morning, I am representing the Ad Hoc Group for Medical Research Funding which is a coalition of nearly 200 organizations representing patient groups, medical and scientific societies, academic and research institutions and industry. We wish to acknowledge and thank all of you for the difficult choices this subcommittee has made in the past two years that have enabled the extraordinary increase in the NIH budget. To best assess the available research opportunities, the Ad Hoc Group relies on the professional judgment of the NIH leadership. For fiscal year 1998, the Ad Hoc Group supports the 9 percent increase identified by Dr. Varmus. We recognize that a 9 percent increase in the NIH represents a high figure in the current budget climate. However, we believe that this proposal represents a realistic assessment of the available opportunities. And we have confidence that you will do everything possible to enable the NIH budget to take advantage of these opportunities. The benefits of medical research are realized on several levels: improved prevention, diagnosis and treatment of disease, enhanced quality of life, and contributions to a stronger economy through decreased health care costs, increased productivity and the development of thriving biotechnology and pharmaceutical industries. The highest form of success against disease and disability is attained through prevention. NIH funded researchers have been successful in the development of new vaccines and screening techniques that allow individuals to live healthy lives, uninterrupted by certain diseases. This work has major implications for decreasing health care costs and I would like to cite two examples from my own area of infectious diseases. Last December, I participated in an external review of the Laboratory of Infectious Diseases at the National Institute of Allergy and Infectious Diseases. This one laboratory reported major strides in the development of two new vaccines. They had played a major role in collaborating with Smith Klein Beecham in the development of the first approved vaccine against hepatitis A, which has been available to the public now for about two years. Hepatitis A virus, you may remember, was recently associated with strawberries present in school lunches. It is a serious problem affecting millions of people every year. Additionally, the laboratory has under FDA review now their first vaccine, which is a first against retroviruses, the leading cause of serious life-threatening diarrheal disease in young children around the world. This vaccine has already been recommended for use in developed countries by the World Health Organization. In a similar manner, the National Institute of Child Health and Human Development developed a successful vaccine against hemophilus influenza type B. This vaccine has greatly decreased the incidence of middle ear infections in children and completely protects against the meningitis caused by the bacterium. There used to be 10,000 to 15,000 cases in this country a year of hemophilus meningitis. This was a leading cause of mental retardation. As of now, the vaccine is estimated to save about $450 million every year. Not only does NIH research make Americans more productive employees through reductions in disability and disease, NIH also bolsters the economy by stimulating industry. As an example, NIH supported research helped in the development of the biotech industry, which had sales last year of nearly $11 billion and provided 118,000 high tech jobs. The member organizations of the Ad Hoc Group vigorously urge you to appropriate a 9 percent increase for fiscal year 1998 in the NIH budget to allow it to continue its research efforts that help prevent disease and overcome serious illness that enable disabled individuals to return to work and lead productive, independent lives. Thank you, Mr. Chairman. [The prepared statement of Kenneth Berns, M.D., follows:] [Pages 3 - 8--The official Committee record contains additional material here.] Mr. Miller. Thank you, Dr. Berns. We appreciate it. Nine percent would be a noble goal, but as you say, we have tough decisions to make. We have strong bipartisan support, and we appreciate the great work you are doing. ---------- Tuesday, April 15, 1997. WITNESS WILLIAM E. ARNOLD, AIDS DRUG ASSISTANCE PROGRAM Mr. Miller. We will now go to William Arnold, who is Co- Chair of the AIDS Drug Assistance Program. Mr. Arnold, if you all would identify yourselves for the record, we would appreciate it, and the organization you are representing, and proceed with your testimony. Welcome. Mr. Arnold. Thank you, Mr. Chairman. I am Bill Arnold, from the ADAP Working Group. I have with me today my Co-Chair, Ms. Dorothy Cable, on the far left, and an active member of the ADAP Working Group, Gary Rose, from AIDS Action Council. Good morning. The ADAP Working Group would like to thank the committee for this opportunity to testify. As I just stated, I am Bill Arnold, and I am testifying this morning on behalf of the ADAP Working Group. In 1996, the HIV-AIDS epidemic entered a new era, one marked by hope based upon advances in understanding HIV infection and treatments. It is the hope of lives saved, lives improved and the economic costs of a disease reduced. Transformation of this hope into reality for HIV-infected Americans depends upon informed policy decisions. One of those decisions is the appropriate funding level for AIDS Drug Assistance Programs. Dr. Michael Sag, of the University of Alabama, one of the Nation's leading HIV experts, recently said ``We used to try to keep patients alive until next Christmas. Now our goal is to keep them alive for the next two or three decades.'' Dr. Sag, Dr. Chip Schooley, and Ms. Mary Fisher will be among those speaking at the Congressional briefing, which the ADAP Working Group is presenting here in the Rayburn Building for members and staff two days from now. I hope that many members of this committee and their staffs will be able to attend that briefing. New science and new clinical knowledge are driving the development of the new PHS-NIH principles and guidelines for HIV disease therapy. They will urge physicians to treat HIV disease earlier and more aggressively for the purpose of delaying or preventing progression of HIV infection into more advanced stages of disease. Such treatment will mean, and the guidelines will suggest a combination of regimens, which will include a higher number of individual medicines and newer more expensive medicines. Unfortunately, it is unlikely that many public programs will be financially able to offer the new standard of care to patients who may need it. Among the hardest hit will be those who depend upon the ADAP programs. The pressure will continue to come from increasing numbers of people enrolling or trying to enroll in the AIDS Drug Assistance Programs and the evaluation of the standard of care under treatments with more and more powerful medicines at earlier stages of HIV disease. This in the context of an expanding pool of uninsured or under- insured Americans. During the past year, even without any Federal level national guidance, ADAP enrollees increased utilizations of medications by 23 percent. The total dollar cost increased by 32 percent. Basic individual enrollments in the programs increased by 14 percent. Last September, the ADAP Working Group released its first pharmoeconomic computer model projection. At that time, projecting fiscal year 1997 ADAP funding needs. Events since then have borne out the accuracy of that model. Thanks to the Administration and to Congress, ADAP actually achieved the funding level in targeted ADAP funding of $160 million in fiscal year 1997, about $80 million short of what the ADAP Working Group had projected. Accordingly, we do expect severe ADAP progress distress to show in the second half of fiscal year 1997. In the meantime, State and other funding sources to ADAP have increased more rapidly than we expected. The actual fiscal year 1997 shortfall we are now projecting is less than $80 million. It is down to about $66 million. The impact of these trends is already evident. This Thursday, at our Congressional briefing, the ADAP Working Group will release preliminary findings from a survey of all ADAP programs. Four states have yet to even add the new protease inhibitor therapies to their available drug list. Many ADAP programs have been forced to limit access to the drugs, which they will provide 17 programs, including high incidence AIDS States like Georgia and Florida, are capping, limiting or rationing their coverage in some way. Such fiscal prudence has helped to avoid program bankruptcy in many States, but the end result is obviously that these programs are unable to provide an adequate level of service or access. Presentation at the Fourth Conference on Retroviruses and Opportunistic Infections offered persuasive evidence that aggressive treatment similar to what we expect the PHS-NIH guidelines to recommend does result in significant reductions in cost for hospitalizations, expensive opportunistic infection treatments, home health care and hospice services. A few days ago, Bruce Vladek, Administrator of HCFA, spoke publicly about using Medicaid waivers and other policy changes to enable Medicaid to provide new HIV-AIDS earlier in the disease process, before people are so sick as to be disabled, and at a time when we now know benefits are likely to be significantly greater. He stated the likelihood that this approach will prove to be budget neutral. Changes of this type could greatly relieve some pressures on ADAP, but would not replace the need for ADAP. Vice President Gore has since announced the Administration's strong support of this concept. TheAdministration's statement and the budget neutral theme have now been widely reported in the media. We have tracked the actual increases in ADAP and it is clear that almost 1,000 new clients each month are utilizing the ADAP program. A computer model developed by a respected pharmoeconomist was used to estimate the cost of providing a standard of care to those utilizing ADAP on a month by month basis out through March of 1999. This same model predicted expenditures in New York State's ADAP program within 5 percent of its actual totals last year. If you wish to leave the record open at this point so that those materials which I just referred to can be included, we will be glad to provide them to you. The model now projects a shortfall in the current fiscal year 1997 funded program year of $66,895,741. The ADAP Working Group hopes that Congress and the Administration will act together to address this need before the AIDS-affected communities and headlines are again full of the news on patients losing their treatment and the ADAP program shutting down. Today I speak mainly, however, to the need for the correct funding level for fiscal year 1998. We understand the Administration's position to be that they are asking for no increase in the targeted ADAP amount above last year's $167 million, which we clearly see will result in a shortfall. However, they have promised to revisit the need for ADAP when they have had a chance to look at our data, our need projections, the results of the National ADAP survey now going on, and their own Government data and analysis processes are completed. We believe the fiscal year 1998 need to be $131 million in additional funding above the President's budget request of $167 million, or a fiscal year 1998 total of $299 million in targeted ADAP funding under Title II of the Ryan White CARE Act for fiscal year 1998. State and other ADAP support has doubled to about $100 million since our last model projection eight months ago. However, State and other sources of support for ADAP will also need to increase during this period by an additional $46 million for the period. The decision to fully fund ADAP is a sound policy decision. There appears to be an emerging consensus that it will make sense in today's world of fiscal restraint and budget balancing as well. We have lost too many people in the 16 years of this epidemic. Let us work together so that we may lose as few of our fellow Americans with HIV as possible. I have submitted a written statement for the record. Thank you and I will be glad to answer any questions. [The prepared statement of William E. Arnold follows:] [Pages 12 - 19--The official Committee record contains additional material here.] Mr. Miller. Thank you, Mr. Arnold, for your very fine testimony. We have come a long way, as we all know, and this committee has been as responsive as possible under our fiscal constraints we operate under to satisfy that particular need. Hopefully we can continue. Did you have any comments, Ms. Pelosi? Ms. Pelosi. Just briefly, Mr. Chairman. I too want to thank Mr. Arnold and others for their presentation and the hard work that you have put into that. We are eagerly awaiting the standards of care report that the Administration will be releasing. I hope very shortly that it will give some direction to the committee as well. But you made a very comprehensive report and it will be very valuable to the committee. Thank you for your hard work and for your testimony today. Mr. Miller. Thank you, Mr. Arnold. ---------- Tuesday, April 15, 1997. WITNESSES MICHAEL EHRLICH, M.D., AMERICAN ACADEMY OF ORTHOPAEDIC SURGEONS TAYLOR BREEDLOVE ROY BREEDLOVE JUDGE DANA RASURE Mr. Miller. Next, we will have Dr. Michael Ehrlich, Chairman, Committee on Research. Accompanying him is Taylor Breedlove, his patient, of Tulsa, Oklahoma. He is representing the American Academy of Orthopaedic Surgeons. Dr. Ehrlich. Mr. Chairman and members of the committee, I am Dr. Michael Ehrlich, Professor and Chairman of the Department of Orthopaedics at the Brown University School of Medicine in Providence, and Chairman of the Committee on Research of the American Academy of Orthopaedic Surgeons. With me today is my patient, Taylor Breedlove, of Tulsa, Oklahoma. She is accompanied by her mother, Judge Dana Rasure, and her father, Attorney Roy Breedlove. Our formal statement has been submitted for the record. I would just like to share with you briefly the benefits of the musculoskeletal research and how the Federal investment in our medical research at the National Institutes of Arthritis and Musculoskeletal and Skin Disease has given my 11 year old patient, Taylor Breedlove, and others, hope for the future. Musculoskeletal disease are chronic. However, the suffering and the patterns of chronic disease can't be appreciated until you see how it affects children and their families. For each single child who is disabled, a half million dollars is lost from their contribution to the work force in their life. Taylor Breedlove was born paralyzed from the waist down due to failure of her spine to form, a condition called sacral agenesis. Taylor's hips dislocated early in life because of her abnormal muscles. With dislocated hips, she was very stiff and unstable and walking would have been impossible. Ten years ago, we would not have operated on these patients. There would have been too much pressure on the hip if we placed it back into the socket. In those cases, the bone, the hip bone, would have died. Modern research taught us about the circulation to the hip, and how the hip could be preserved. These discoveries are the results of basic and clinical research. It is a combination of expanding and testing the knowledge base that makes the Federal investment in biomedical research worthwhile. The problems that Taylor's family faced and still having to face are monumental. Although we have made some progress, conditions involving damage to the muscles, nerves and bones require better research to cure and treat them. Taylor's father, Roy Breedlove, will explain their odyssey for help and the impact on his family's lives. Then you will hear from Taylor, how she now functions on a day to day basis. Mr. Breedlove. Thank you, Mr. Chairman. Taylor is our only child. She was born 11 years ago. We were told she had spina bifida, which is the most common of the neural tube defects, hydrocephalus, which required shunting of the brain to keep the cerebrospinal fluid out of the ventricles of the brain. She was born with sacral agenesis, which means an absence of the portion of her spine. She had scoliosis, which is a lateral curvature of the spine. She also suffers from kyphosis, which is an outward curvature of the spine, and paralysis of the lower extremities. Her combination of medical issues was described to us by physicians we initially saw in Tulsa, Oklahoma, as being highly unusual. Before Taylor was one year old, we had visited with physicians in Tulsa, Oklahoma City, Kansas City and Minneapolis. We were unable to believe that nothing could be done to help our child. We were advised that the best medical treatment would not even allow her to sit in a wheelchair without her chest collapsing. After numerous trips to Minnesota and a second opinion in Indianapolis, Indiana, we were most discouraged. Fortunately, Dr. Ehrlich was recommended to us, as it turns out, by another family in Tulsa, Oklahoma. In Dr. Ehrlich's opinion at the time we saw him, a child who was approaching five years of age, which is how old Taylor was at this period of time when we were seeking assistance, was almost too old to be a candidate for surgery to locate her hips back into the sockets. Of course, you can imagine how frustrating that was to her parents. At the time, we thought we tried fairly hard to find a doctor who was willing to tackle, which we understood would be a most difficult case. Putting Taylor's hips back into their sockets would ultimately require eight weeks of traction at a hospital in Rhode Island before surgery and then a body cast that she could wear for four months after surgery. Fortunately for Taylor, her surgery was successful. Before long, she was upright for the first time and able to bear weight. She quickly progressed to being able to use a walker and walk around the home on a walker. To everyone's amazement, and most importantly to Dr. Ehrlich's amazement, she eventually used forearm crutches. Taylor can even walk backwards for a short distance. We are convinced that Taylor's future is bright. She is doing exceptionally well in the fifth grade at a college preparatory school. She is extremely happy, she is a very healthy child with the exception of the few bouts with a cold or that sort of thing. She has been extremely healthy other than the obvious conditions I have outlined. I am convinced that her medical costs are much less than they would have been had she been sitting in a corner chair, which is what was recommended to us at the time. Dr. Ehrlich provided Taylor with an opportunity to take some first steps to independence. Taylor has seized that opportunity and run with it. We would ask that this committee seize the opportunity to help so many by funding orthopaedic research. Ms. Breedlove. Good morning, Mr. Chairman. My name is Taylor Breedlove. I am 11 years old. I am in the fifth grade at Holland Hall Middle School in Tulsa, Oklahoma. I hope that you will agree with me that medical research has been very helpful in my life. Dr. Ehrlich, my orthopaedic surgeon, performed surgery on my hips seven years ago. As a result of that surgery, I am able to stand while wearing braces and walk. At school, I walk from class to class. Driller, my service dog, carries my books, picks up my pencils and helps me with my crutches. Even though Driller was trained to pull my wheelchair, I do not need his help. I am living an exciting life. Last year, I was one of 10 finalists in a national essay contest. I received a trip to Washington, D.C. with my family. This year, I placed third in our school spelling bee. I particularly enjoy science, in school, and have been conducting independent study in chemistry. I think orthopaedic research is important because it has allowed me to do many things I would not have otherwise been able to even try. I appreciate the opportunity to ask you to full fund orthopaedic research. [Applause.] [The prepared statement of Michael Ehrlich, M.D., follows:] [Pages 23 - 29--The official Committee record contains additional material here.] Mr. Miller. Taylor, thank you very much for coming to Washington again. I think you should be very proud to have parents that are so supportive of you. Dr. Ehrlich, thank you very much for the very fine work. Certainly, we are very supportive of orthopaedic research. ---------- Tuesday, April 15, 1997. WITNESS RICHARD J. O'REILLY, M.D., AMERICAN ASSOCIATION FOR CANCER RESEARCH Mr. Miller. Next, we will have Dr. Richard O'Reilly. Dr. O'Reilly. Good morning, Mr. Chairman. I have to say, I am a pediatrician, and that is called a very hard act to follow. I am Richard O'Reilly. I am Chairman of the Department of Pediatrics and Chief of the Marrow Transplantation Program at Memorial Sloan-Kettering Cancer Center. I feel privileged to appear before you today to present testimony on behalf of the American Association for Cancer Research, a professional society consisting of over 13,000 scientists and physicians who conduct laboratory, clinical and translational research into cancer. I would like to take a moment to thank this committee, in particular, for its extraordinary support and leadership on behalf of the National Institutes of Health and particularly the National Cancer Institute. The AACR is fully aware of the restrictive fiscal environment with which Congress is faced. We are most appreciative of the fact that you have really made this effort a high priority. I have made written remarks. I feel that at this time, I would like to just make a few short ones. Before I start, I want to dramatize the problem specifically in cancer by asking each of you and each of the members of the group here to look to right and left. Then look straight ahead, recognize that one out of three of you is going to develop cancer. That is the problem. Each year, 1.4 million Americans are diagnosed with cancer, and 560,000 Americans die of cancer every year. When you think of the time frame of World War II from 1941 to 1945, 291,000 Americans died in that conflict. Yet, we permit 560,000 Americans each year to die of cancer. Cancer is an intolerable national tragedy that can no longer be accepted. Even more tragic to my mind, there is a pervasive attitude that somehow nothing can be done. The exact converse is true. The statistics are not ones that I feel are tenable by a Congress of this type or a Nation of this type. The cost of care for patients with cancer exceeds $104 billion annually. Yet, the research budget proposed for the National Cancer Institute is $2.4 billion. There is not a company nor a general going into a war, who would tolerate it. Another irony, we paid $61 billion to support the Gulf War. Much of that money was used, appropriately, to see to it that Americans lost in that conflict would be at a minimum. We aree talking about somewhere in the neighborhood of 10,000 lives. Yet we are devoting $2.4 billion and that is it, and we are allowing 560,000 Americans to die every year of this disease. That is one person every 57 seconds. That is just an extraordinary national tragedy. Twenty-five years ago, this Congress and this Nation committed to a war on cancer. They established cancer centers, research program, and national cooperative groups, which were designed specifically to try to develop a better approach for the treatment of cancer. The progress there, I think, is really quite striking, oftentimes not recognized. The fact of the matter is that in 1971, when I was a House Officer, if a child had leukemia, that child was doomed to die. Less than 20 percent of those kids lived five years. I was told, by my peers, that it was unethical to consider or to present the idea to parents that a child could be cured of cancer. Yet today, 80 percent of children with leukemia will be cured with modern chemotherapy. We have several of the cancers, among kids, that are the same. In the last 10 years alone, we have increased the cure rates anywhere between 10 and 40 percent. Among adult cancers like testicular cancer, Hodgkin Disease, certain forms of lymphoma, even breast cancer, singular advances are now being made in treatment. And as a result of that, for the first time in the Nation's history between 1991 and 1995, there has been a tangible reduction in the mortality rate due to cancer of 3 percent, this at a time when the overall incidence of cancer is increasing because of the obvious fact that our population is getting older. We have also made dramatic advances, both in therapy and in our knowledge of cancer. There are several new drugs. You can take Taxol, and any of the cytokines that we use to support the blood system. You can talk about antibodies that will specifically target tumors. All of these have been introduced now and are being evaluated in clinical trials. We have made dramatic advances in our understanding of the genetics of cancer. In recent discoveries of breast cancer 1 and breast cancer 2, the different genes contribute to familial colon cancer. These are now recognized, and are clearly an area where we can make dramatic progress in the future. We have also begun to achieve a new understanding of how the host can resist these kinds of tumors, both at the cellular level and within the immune system. Over the last two years, for example, we have now come to recognize in my own field of marrow transplantation that doses as few as 1,000 immune cells can, in fact, induce durable remissions of diseases like chronic myelogenous leukemia, or EBB lymphomas, diseases which kill a large proportion of patients with AIDS today. So if we look back on those last 25 years, there have been dramatic improvements in terms of care, and there havebeen dramatic discoveries in terms of the nature of cancer and what it is all about. I also want to stress the fact that this is a two way street. It is not just going from the laboratory to the patient. But it is from the patient to the laboratory as well. People oftentimes don't recognize, in the budget, the contributions being made by clinical scientists who at the bedside observe disease. Yet when we think about monoclonal antibodies, we tend to forget that in fact it was a clinical scientist who recognized myeloma to be monoclonal disorder. We forget about the Chinese, who worked with Vitamin A derivatives that have actually opened up a whole new field of therapy in terms of promyelocytic leukemia, with all trans-retionic acid. We also forget about the fact that while we have made these dramatic advances in the molecular genetics of cancer, there are all those clinicians who very clearly worked hard to basically define the genetics of susceptibility and pedigrees of high risk. As a result of that that combination of talent, we have had this extraordinary explosion in what we now know as the genetics of cancer. While I deal with cancer in kids, one vignette, I want to be sure that everybody recognizes that the price of cancer therapy now is high, not just in dollar, but also in the intensity of the therapy. When I give a transplant to an adult, or a child, and I give a transplant from a normal individual, to get rid of that patient's leukemia, I currently, on a daily basis, give about 1,500 rads of total body radiation. To put that in perspective, that is equivalent to standing 600 yards from the epicenter of the bomb at Hiroshima. That is the dose I am giving. Despite that, there are leukemias that come back; and despite the chemotherapy that I give, they will come back in many instances. We are right now using tanks for mosquitos. If we do not begin to develop better targeted therapies, therapies that are specific to the cancer and not to the general cells in the body, we are really doomed. This legacy of extraordinary advances over the last 10 years is going to be a very mixed blessing. What we in the AACR are doing is proposing something that may not be quite so popular. It is not so easy. What we say is that the cancer budget has to be doubled by the year 2000. Why doubled? The reason for doubling is really threefold. First of all, at the present time, we are in fact funding no more than 22 percent of the approved grants that are submitted at the present time. In fact, it really works out to be about 15 percent, because a large proportion of the grants that we are now submitting are resubmitted because of the fact that the first time or second time they have not been even close to approval in terms of funding. The second aspect of it is that we do not have the infrastructure necessary to conduct the type of clinical and translational research that is so essential, at the present time, to take these advances in the laboratory and bring them to the patient. We for example, let me give you an example again in pediatrics. Pediatrics was taken on as a national priority in the 1970s. All kids with cancer are treated by pediatric oncologists usually based in academic centers. As a result of that, in 1996, of the 10,000 kids expected to develop cancer, 9,500 have been treated on clinical protocols, registered in cooperative trials. Now, because of this, and because of the step-wise approach that we have used to treatment in cancer, we have made dramatic improvements in the care of kids with cancer. Now, let us contrast that with the adults. At the present time, no more than 6 percent of the adults with cancer are registered on a trial. More than 1 percent are actually treated on a protocol. That is a fact. Now, if that is the case, do we really think that we have a national effort towards the eradication of cancer? This is with treatment. What about if we now have all these genetic markers? How will we begin to apply them if we are only applying them to at most 1 percent of the people who actually are affected by the disease? The other problem is that, in real terms, we need better trained people. The fact is that over the last 25 years, not only have we had an explosion in our knowledge, but an explosion in our techniques for conducting both basic and clinical research. Right now, we are no longer in the circumstance where clinical research is haphazard. It is a rigorous scientific discipline for which we need trainees. For these three reasons alone, one, we have too many good ideas that are put in the trash can right now; two, we have too few patients with cancer for whom this kind of modern therapy is available; and three, because we have too few who are trained to actually carry out the mission. We desperately need this doubling. In summary, we believe the Nation's efforts in cancer research are in grave crisis. We are deeply concerned that the support requested in the proposed budget is grossly inadequate. At this time of national need and exceptional opportunity, research into cancer must not be viewed as a contracting scientific enterprise. The opposite is called for. We, as scientists and clinicians, have often sat back and remained silent when activism was required. The reality of cancer, however, is just too monstrous. It is too ghastly a reaper of human life, both in its bloom and in its old age. This crisis in national will must be met, and we ask you to help us to get there. Thank you. [The prepared statement of Richard O'Reilly, M.D., follows:] [Pages 34 - 44--The official Committee record contains additional material here.] Mr. Miller. Thank you, Dr. O'Reilly. I have always admired pediatric oncology as one of the toughest areas to be in, I have always thought. It is an area that, in some ways, we are preaching to the choir. Congresswoman Pelosi and myself and other members of this committee fully support you. I think what everybody in this room needs to do is, we need to get more and more public support. People do not realize, I mean, all around the country, and when I talk about it back in my home in Florida, what great work the NIH is doing, and it needs more. It is one of the highest priorities we have. But how much can we get. We are going to be pushing as far as we can. I commend you and your colleagues, especially in pediatric oncology. It is a very tough area. Thank you very much for your very good testimony. You are also, not only did you have Taylor Breedlove before you, you have Dr. Michael DeBakey following you. ---------- Tuesday, April 15, 1997. WITNESSES MICHAEL DEBAKEY, M.D., FRIENDS OF THE NATIONAL LIBRARY OF MEDICINE DONALD LINDBERG Mr. Miller. So we are very proud to have a very distinguished gentleman, Dr. Michael DeBakey. Welcome, Dr. DeBakey. It is an honor to have you with us today. Dr. DeBakey. Thank you, Mr. Chairman. I am delighted to have this opportunity to present my views to the committee. I want to thank you for the opportunity. I have a prepared statement, which I would like to submit for the record, if I may. I am testifying on my own behalf and that of the Friends of the National Library of Medicine. The National Institutes of Health is undoubtedly one of the really stunning success stories in the history of U.S. science, indeed, in the history of world science. My association with the institution goes back a long ways. I have been associated with it for over four decades, both as an advisor, and a supporter and a grantee. I am thoroughly familiar with the aspects of the National Institutes of Health. I am also very grateful for the fact that Congress has provided great support to the National Institutes of Health. I think this is a very important recognition, certainly one that I think the people in the country should recognize. I think that the people in the country should also appreciate the fact that from a taxpayer's standpoint, the results of the operation of the National Institutes of Health is certainly, to me, one of the most valuable processes that we have in terms of what we are paying for, as taxpayers, for the Government. The stream of knowledge that comes out of the National Institutes of Health activities has really made American medicine the premier medical endeavor in the world today. When I was a medical student, it was generally regarded as necessary to get further education in medicine to go abroad. We now have people coming here for that purpose. We do not have to go abroad. In a previous statement that I made about the proposed budget for the funding of the National Institutes of Health, I said very clearly that I thought the 2.6 percent increase is simply inadequate for the purpose of continuing the necessary function in terms of improving our knowledge of the health and the need to meet the opportunities that are available in a scientific endeavor. The introduction of the National Library of Medicine into the NIH campus, which you may recall occurred in the 1960s, was a truly logical move. I was associated with that development personally, because I was a member of the medical task force of the Hoover Commission that made the recommendation to establish the National Library of Medicine. So I have been associated with it for a long time. I was on the early board of regents of the Library of Medicine. I have recently been on it for a second time. I am thoroughly familiar with the National Library of Medicine and its activities. I can assure you that this, too, has become a most important and valued source of information in the world. The National Library of Medicine is looked upon and is used all over the world as a source of information. It really actually serves a very important and essential role in American medicine today. It is also, I think, very fortunate to have as its Director, Dr. Donald Lindberg, who is not only highly qualified medically, but also is considered an undisputed leader in the application of communications technology and health care. This is a growing, and rapidly growing endeavor, which I think is going to actually change the whole face of medical technology and medical information. The most recent example of this is a series of contracts that the Library has awarded for the development of evaluation of telemedicine and preservation of privacy in the medical records. It is of growing importance. In a related matter, I believe it is absolutely essential that the Library be included in the so-called Next Generation Internet program. I think there is no aspect of today's society that is more worthy of reaping the benefits of the expanding national information infrastructure than medical research and health care today. I was interested just this morning in hearing, I think on C-SPAN, a presentation about the Internet and the World Wide Web. I was interested in the fact that 37 percent of all the inquiries on the Internet are concerned with health care. So it does reflect the significance of health care and its importance to the public, and to the people. It is a national information infrastructure, especially the Internet and the World Wide Web, that now provide the Library with its greatest opportunity. Citizens are increasingly turning to the Web as a source of information. And the public has never been so well informed on matters of health. I think the American public particularly is perhaps the best informed public in terms of health matters. They are very much interested in health matters. And this is a great opportunity to provide them with the health information that they're looking for. The opportunity I see is two-fold. First, the Library could provide access to its vast MEDLINE data base of references and abstracts to all U.S. citizens without charge on the World Wide Web. Not only does the technology make this feasible, but a new National Library of Medicine program is beginning to make it possible for users to retrieve the full text of some articles in MEDLINE. It has been said that a well informed and educated public is a bedrock of democracy. I think the same can be said about the importance of health to the public in terms of a healthy citizenry. The National Library of Medicine is to be commended for working closely with the major private sector medical publishers on this program. Second, the Library could broaden the scope of its data bases to include authoritative health information intended to the lay audiences. These moves, coupled with the Library's vigorous outreach program, would dramatically increase the utility of the world's largest data base of medical information. I believe that the health care professionals and consumers should be able to tap into the most recent medical information, for that is a public service, not a commodity. Even with all our modern advances in health care, I still consider good information to be the best medicine. Mr. Chairman, I realize you must consider many worthy competing claims for the resources. Nevertheless, I would suggest that a 9 to 10 percent increase in the National Library of Medicine over the fiscal year 1997 to support a health component in the Next Generation Internet initiative and to improve access to health information would be in the Nation's best interest. Thank you for allowing me to appear before you. [The prepared statement of Michael DeBakey follows:] [Pages 48 - 56--The official Committee record contains additional material here.] Mr. Miller. Dr. DeBakey, thank you very much for taking your time to come before this committee. You are obviously a very respected person, and it is really a pleasure and honor to have you here today. So thank you very much. I know you have with you Dr. Lindberg over here from the National Library of Medicine. I have visited the National Library of Medicine, as have most members of this committee. It is an impressive facility. Yesterday, this committee was in Atlanta, to visit CDC mainly, but we also stopped by Morehouse School of Medicine, a relatively new minority medical school, and visited their library. For a new medical school that can get up to speed so quickly, because of the technology that is available to them is impressive. It was also interesting, which made me think, a few months ago when I was in Venice, Florida, in my district, I visited a community hospital in town. It was interesting, the availability of information for patients there. This is not a research hospital. They have available for anyone that wants to find out information via the Library of Medicine. So it was very impressive. That is one of the many components of NIH that we should be very, very proud of. Dr. DeBakey. Thank you. Mr. Miller. Ms. Pelosi? Ms. Pelosi. I want to join you in welcoming Dr. DeBakey here today, and thank you for all of your leadership which has made us all so proud in our country. As a co-chair of the Biomedical Research Caucus, which strives to educate members and their staffs to the need for this increased funding, I appreciate your testimony and that of so many others who have testified and will testify for support for increased funding at NIH, and particularly in your case, the Library of Medicine. I do also, though, want to point out that as others have, this is in the interest of budget, of balancing and deficit reduction, because of the money saved by the increased research, and lives improved, quality of life, etc. The only problem is that it is a sum zero game in here, and to the extent that I agree with you that the increase proposed for this year does not even keep up with biomedical inflation, that we have to do more, it has to come from some place. Those who follow this committee are tired, I am sure, of hearing me say, it is lamb eat lamb in here. Because every place you go to look to take money from, if you want to increase one function, you have to take it say, from education. So while it is great for us when such distinguished scientists and physicians come before us to testify for the increase, I hope that you will include in your lobbying effort increased funding for all that contributes to biomedical research, education, early childhood education, so that we have our farm team coming up to produce the scientists we need at the other end, and a healthy and well educated country. I agree with you, I think it is our best dollar spent, what we spend at NIH. And it has the power to cure. And we should provide the resources where the scientific opportunity exists. But please help us also with other functions, because this is the 800 pound gorilla. It sits there and we all want to, it is not controversial, we all want to increase it. But at the expense of education or early childhood education, Head Start, etc., it is a challenge to us. So please help us get a bigger figure. Because in the end, as you have said, all of you, it does save money in addition, of course, to the important work of improving, keeping our country healthy and improving the lives of people. Dr. DeBakey. Thank you. I will do my best to do that. Ms. Pelosi. Thank you. Mr. Miller. Thank you very much, Dr. DeBakey. ---------- Tuesday, April 15, 1997. WITNESS DOUGLAS L. WOOD, D.O., AMERICAN ASSOCIATION OF COLLEGES OF OSTEOPATHIC MEDICINE Mr. Miller. Dr. Douglas Wood. Welcome, Dr. Wood. Dr. Wood. Thank you, Mr. Chairman. I have the privilege of following the esteemed Dr. DeBakey and the stellar Taylor. Mr. Chairman and members of the subcommittee, I am Dr. Douglas Wood, President of the American Association of Colleges of Osteopathic Medicine, which I will refer to as AACOM. I am pleased to present the views of our 17 colleges for and on fiscal year 1998 funding for health professions education assistance programs under Title VII of the Public Health Service Act. First, let me say that AACOM greatly appreciates the past efforts of the subcommittee to maintain a commitment to health professions education. The subcommittee's vision under the leadership of the Chairman will enable health professions schools in general, and colleges of osteopathic medicine in particular, to meet the physician and work force needs dictated by a rapidly changing health care delivery system. At the same time, we recognize the responsibility of the subcommittee to examine all programs in light of their cost effectiveness in meeting the health care needs of all Americans. We believe that colleges of osteopathic medicine measure particularly well under that scrutiny. By training and by tradition, osteopathic physicianspractice hands-on, holistic medicine, and value the highly close and interactive physician-patient relationship that is characteristic of our profession. This philosophy has driven a unique educational model in our schools. AACOM is especially proud that the model of osteopathic medical education is entirely consistent with the Federal objectives of rectifying physician geographic maldistribution in the United States and increasing access to primary care services. It is important to note that this model has not been developed recently in response to Federal funding requirements; rather, it has been at the core of osteopathic medical education for over 100 years. The principal vehicle for addressing the specialty and geographic maldistribution of physicians has been through primary care education and training. AACOM member schools have a long history of training primary care physicians to work in America's smaller communities, rural areas, and under-served urban areas. The health professions assistance programs under Title VII of the Public Health Service Act have been valuable in our efforts to continue to ensure this commitment. These programs are the most visible Federal commitment to the important task of educating primary care physicians. The Federal Government and medical educators need to expand their collaborative efforts to build a strong primary care physician population. Numerous programs are especially important to enhancing osteopathic medical schools' ability to train the highest quality physicians. Examples of these programs are support for general internal medicine residencies, general pediatrics residencies, family medicine training, preventive medicine residencies, area health education centers, and several other examples. Although time does not allow, Mr. Chairman, in our written statement we have cited a number of examples from Florida, Michigan, and Texas where Title VII funds have been especially helpful in establishing innovative programs. Title VII also authorizes student assistance programs that are especially important to osteopathic medical schools. This subcommittee must be concerned with minimizing the debt load of our graduates if they in turn can be expected to hold down medical costs, practice in primary care specialties, and locate in under-served areas. In addition, exceptional financial need scholarships, financial aid for disadvantaged health professions student scholarships, and scholarships for disadvantaged students are all programs that must be maintained if we are to ensure access to medical education by under- represented groups. Accordingly, Mr. Chairman, AACOM recommends that the fiscal year 1998 funding level for Title VII be $234 million. This figure is a modest 3 percent increase over the amount Congress appropriate for fiscal year 1997. Mr. Chairman, although we generally support the actions of the subcommittee over the past two years, we do believe that one item needs to be revisited. Effective October 1, 1995, a phase-out of the Health Education Assistance Loan program, HEAL, began. Since that date, no HEAL loans have been available to first-time borrowers. This action has created special hardships for osteopathic medical students, who rely more heavily on HEAL than any other source of financial assistance. Elimination of HEAL could have a significant negative impact on osteopathic medical education at both ends of the pipeline. Students who are otherwise qualified and who are considering application to medical schools might find this opportunity closed because of their ineligibility for other loans. On the other hand, those students who are eligible for non-HEAL loans will be faced with an increased debt load. This would serve as a disincentive, then, to practicing primary care, which provides smaller salaries than many of the specialties, and/or practicing in rural settings, which has little financial inducement. In addition, revised figures on the cost of the HEAL program indicate that it is extraordinarily cost effective to both students and taxpayers. Based on this information and the fact that osteopathic medical students have had the lowest default rate among all health professional students who have HEAL loans, that rate being 1.5 percent as of September 30, 1996, we respectfully request that the subcommittee restore full funding for the HEAL program. Again, let me emphasize the importance of Title VII support for colleges of osteopathic medicine. As noted in the most recent annual report of the Physician Payment Review Commission, osteopathic medical schools receive comparatively smaller revenues from research contracts or physician practice plans. Title VII support for our institutions and students is thus essential to our viability. Mr. Chairman, in conclusion let me say that the efforts of the subcommittee in support of health professions education assistance programs have been most encouraging. We look forward to working with you. I thank you and I would be willing to answer any questions. [The prepared statement of Douglas L. Wood follows:] [Pages 61 - 68--The official Committee record contains additional material here.] Mr. Miller. Thank you, Dr. Wood. As you have heard so far, we always have these tough choices to allocate limited resources. But I appreciate that. You made me think. I see you are from Michigan. As a kid growing up in Michigan, my mother used to be a D.O.N. at an osteopathic hospital, I think it was Garden City. It is probably not even there any more. Dr. Wood. It is still there. Mr. Miller. Is it still there? This was back in the early 1950s, so it was a long time ago. I appreciate your testimony. Thank you very much. And I also want to thank you, and the Association, because a new requirement for testifying before committees is to submit not only your curriculum vitae but also a statement of Federal grant and contract funds. And the Association did provide that, and we appreciate it. I noticed some other groups have not, but that is a new requirement this year when you are testifying before Congress. So those who have not, if you have any questions, certainly ask the committee staff and they can help provide that information. Thank you for providing that. ---------- Tuesday, April 15, 1997. WITNESS CHARLES L. CALKINS, FLEET RESERVE ASSOCIATION Mr. Miller. Next, we will have Mr. Charles Calkins, National Executive Secretary of the Fleet Reserve Association. Mr. Calkins, welcome. Mr. Calkins. Thank you, Mr. Chairman. Before I start, I would like to add a little personal comment. It is kind of surprising how things go around. Our first speaker, Dr. Berns, graduated from Cornell. I grew up in Ithaca, and of course I found out he graduated from Cornell Medicine, New York. Surprisingly enough, before I came down here, I lived in Providence for a while, worked there, my doctor was a graduate of Cornell. Then Dr. O'Reilly from Providence, so a lot of things just fall together all at once. My comments today, and to your distinguished subcommittee, reflect the shortfalls in the President's request for Impact Aid funds. I think that all falls together, as I was starting to allude to, in where do we start our educational process. Again, this coming fiscal year, funds for Category B children of military personnel have not been requested, despite the fact that these children need to be educated under the same curriculum offered to A students. The Administration may be under a misconception that Category B children do not have any impact on the budgets of school districts in which they are enrolled. It may have something to do with the idea that military families living in a civilian community pay a fair share of local taxes, and that there is no need for the Federal Government to provide extra funds for the children's education. However, military personnel are protected by law from paying local income and personal property taxes, and many of them live in the civilian community because they are involuntarily ordered to a military base where there is not sufficient or adequate housing on board. Some live off the base only for as long as it takes to be assigned military housing on the installation. Why should their children be singled out as not being accountable for Impact Aid is a mystery to the active duty members of our association. And can you feel how the children can feel in this same regard. For a decade and a half, one Administration after another has chosen Impact Aid funds as a means to cut the Nation's educational budget. Particularly vulnerable is the funding for the schools educating the children of members of uniformed services. In southern California, for example, some school officials fed up with reduced Impact Aid funds threatened to close their schools to military sponsored students. Some school districts have tried this approach but have been forced by court orders to continue educating these children. This is not fair to the school districts bearing the impact of military sponsored children and having to rely on a restricted budget to do so. More unfair is the harm it does to all children enrolled in the school, whether civilian or military sponsored. As I noted in my prepared statement, Mr. Chairman, members of the armed forces are going through demanding personnel and operational tempos, greater than at any time other than in hostile environments. The services have downsized nearly a third of their manpower over the past six years, with more reductions projected for fiscal year 1998. This, coupled with increased operations, tighter budgets, suspended maintenance and abuse or over-use of equipment and weapons systems, less training time and lack of qualified personnel and technical specialties causes longer separations from families and a strain on morale and force readiness. The Nation should not further demoralize our service members, their spouses and young children by denying adequate funds to the impacted school districts having the responsibility of educating their children. Mr. Chairman and members of this distinguished subcommittee, on behalf of the 500,000 active duty Navy, Marine Corps and Coast Guard personnel, particularly those with elementary and secondary school children attending impacted school districts, the Fleet Reserve Association urges you to appropriate additional Impact Aid funds above the President's request to benefit military sponsored students. Thank, and I would be honored to entertain any questions from the Chairman or your colleagues. [The prepared statement by Charles Calkins follows:] [Pages 71 - 78--The official Committee record contains additional material here.] Mr. Miller. Thank you for being with us today. And your presentation, as Congresswoman Pelosi was saying, we have a lot of tough choices here between research for cancer and AIDS and Library of Medicine and Impact Aid. And I am sorry our Chairman, who is very familiar with the issue of Impact Aid, is not here today. But thank you very much for your testimony. We appreciate your being here today. Mr. Calkins. Thank you. ---------- Tuesday, April 15, 1997. WITNESS EDWARD HAYES, AMERICAN CHEMICAL SOCIETY Mr. Miller. Next, we have Dr. Edward Hayes, who is with the American Chemical Society Committee on Public Affairs, and Vice President for Research at Ohio State University. Welcome, Dr. Hayes. Mr. Hayes. Thank you. I am Ed Hayes, as you just mentioned. I have a prepared statement for the record. I am here representing Paul Anderson, who is President of the ACS, who is on the west coast at the Society's 213th National Meeting. The goal I have today is to give you a chemist's perspective on the value of NIH. As a strategic investment, chemistry is very important in providing an understanding of the basis for the cure and prevention of disease. A chemist's world is the world of atoms and molecules. Chemists are proud of the contributions that they have made to understanding life processes. Consider for just a moment the headlines from a recent issue of the Society publication, Chemical and Engineering News, one article entitled ``Catalytic Antibodies,'' reports a new technique for identifying catalytic antibodies that accelerate specific biochemical reactions. In a second article, entitled ``Keeping Cancer in Check with p53,'' we read how researchers have been working to unravel how this protein functions and to devise drugs to boost its usefulness in controlling tumors. Behind each of these stories, you see the hand of NIH. And you get a sense of the extent to which molecular science and chemists are providing the basis for new discoveries. Behind these remarkable advances stands years of research into fundamental processes of cells, of proteins, and of complex biological systems. Within NIH, the National Institutes of General Medicine plays a very significant role through its funding for the enabling research and training for the biomedical research community, and research that underpins the advances and discoveries of the other NIH institutes. Basic research, at the molecular level, has permitted scientists to overcome formidable hurdles in the past. Today, chemists are optimistic that their contributions will be even more impressive in the future. Another key element, behind NIH's success, lies in the instrumentation support mechanisms. Modern instrumentation is central to the rate of progress. It is also important to watch the dance of the molecules. Though often expensive, modern instrumentation enables researchers to observe directly the fundamental chemical and biochemical processes involved in life, and to gain much-needed insight into the workings of the human system. Until 1992, a primary source of NIH's ability to meet instrumentation needs of biomedical researchers was the National Center for Research Resources program of shared instrumentation grants, affectionately called SIG. However, the incredible reduction in this program's budget by 75 percent in 1992 contributed to a significant drop in total NIH funding for research equipment. In constant dollars, the drop overall has been 20 percent. Today, the entire budget of the SIG program is about $21 million. This level of funding is not sufficient to meet the need for major instrumentation such as high-field NMR and advanced crystallographic detectors. The Society encourages you to give this vital program the strongest support possible. Finally, I want to call your attention to the importance of funding that NIH provides to students. The single most important element of any research program, regardless of discipline, is the presence of well trained, talented and dedicated individuals to conduct the investigation. Because of this reality, our Nation's ability to equip young scientists with the necessary knowledge and insight will determine whether they can continue the tremendous advances of the past decade. Training programs at NIH, through NIGMS in particular, develop the broad-based skills demanded by modern biomedical and pharmaceutical research. Skilled researchers are needed to fuel the rapidly expanding biotechnology industry and the pharmaceutical and diagnostic sectors. Well trained researchers not only increase productivity for these sectors but also help maintain their world leadership in an extremely competitive market. In turn, these industries provide new jobs and products that improve the lives of many Americans. The American Chemical Society recognizes that the financial resources available from the Federal Government are limited. Yet there is a real need to invest now so that we can have a healthy America tomorrow. The Society's recommendation that NIH be funded at a level about 7 percent above fiscal year 1997 appropriation level reflects the balance between investing in a healthier America and deferring high priority research projects while curtailing Federal spending. Thank you. [The prepared statement by Edward Hayes follows:] [Pages 81 - 93--The official Committee record contains additional material here.] Mr. Miller. Thank you very much, Dr. Hayes. This committee is very supportive of basic research in particular, and we are going to do everything we can to get the maximum, with the limited resources we have to work with. Thank you very much for coming to testify. Mr. Hayes. Thank you. The Society very much appreciates the support of this committee. ---------- Tuesday, April 15, 1997. WITNESS WILLIAM L. LOWE, M.D., AMERICAN FEDERATION FOR MEDICAL RESEARCH Mr. Miller. Next we will have Dr. William Lowe, Associate Professor of Medicine at Northwestern University Medical School. Dr. Lowe. Thank you. Good morning, Mr. Miller. Thank you for giving the American Federation for Medical Research the opportunity to testify here today about the challenges confronting our Nation's clinical research effort. A national organization of 7,000 physician-scientists. The AFMR is most grateful for this subcommittee's strong support for the National Institutes of Health. We also applaud your acceptance of the NIH request for additional funds to construct a new clinical research center on the NIH campus. However, we are concerned that increased appropriations have not been provided for much needed initiatives to strengthen clinical research in the extramural community. The AFMR urges this subcommittee to move forward this year with additional NIH funding to revitalize our Nation's clinical research effort. The AFMR is particularly concerned about limited funding available for the earliest stage of clinical research through which a basic science discovery is translated to the benefit of patients. For this research, which may have little or no commercial product potential to attract industry dollars, NIH funding is critically important. Examples of such research include research on nutrition, prevention, transplantation or behavioral interventions. The difficulties confronting clinical researchers and their patients have received much attention, but unfortunately, little action over recent decades. Specific challenges to clinical research include the following: First, average tuition debt of over $63,000 makes a research fellowship paying $28,000 to $30,000 a year a financial impossibility. Second, trained physician investigators are abandoning careers in research. As reported by the AMA, the number of physicians reporting research as a major professional activity has fallen dramatically. In 1970, physicians made up 43 percent of all principal investigators on NIH funded grants. By 1987, this had dropped to 30 percent. Third, as documented by a special outside committee of the Division of Research Grants, there have been problems with NIH peer review of clinically oriented research grant proposals. A fourth problem confronting clinical research is the severe financial pressure on academic medical centers, which has weakened or eliminated their ability to subsidize clinical research internally. These problems have forced researchers and their patients to seek safe haven from health care competition in the general clinical research centers, which are underfunded for the task. In fact, to our distress, the fiscal year 1998 President's request for the GCRCs would hold them to a sub-inflationary increase of less than 1 percent, an effective programmatic cut. The AFMR believes that this subcommittee must take action to provide additional funding for extramural clinical research, just as it has wisely invested in a new clinical research center on the NIH campus. First, the subcommittee should take steps to increase substantially funding for NIH sponsored general clinical research centers across the country. Funding for the GCRCs has not kept pace with NIH wide budget growth in recent years. Accordingly, for fiscal year 1998, the AFMR recommends an increase of $20.5 million, or 17 percent for the GCRCs. My written statement details how these additional funds might be allocated. Second, we recommend that the subcommittee provide an additional $59.5 million, a mere half of a percent of the NIH budget, to fund the initiatives proposed in the clinical research legislation sponsored by Representatives Lowey, Johnson, Hoyer, Pelosi, DeLauro, Leach and Morella. This would include $1 million to expand the existing NIH loan repayment program for intramural scientists to the extramural community; $3 million for the creation of a five- year career development award for clinical researchers; $52.5 million to establish an innovative medical science awards program; and $3 million to create a grant program for Masters and Ph.D. degree training in clinical investigation. We recognize and applaud this subcommittee's resistance to ``disease of the month'' earmarking for the NIH budget. As you consider our proposal for specified additional funding for clinical research initiatives, please keep in mind that such funds would not be directed to particular diseases or investigators. Rather, these funds would go to peer-reviewed proposals to translate basic scientific discovery to the study of disease. These initiatives will advance the goals of the NIH as a whole, which will benefit all NIH institutes and centers, and boost existing NIH efforts focused on women's health, minority health and prevention. In closing, Mr. Miller, permit me to suggest that if this subcommittee does not fund NIH initiatives to address the clinical research crisis, we will continue to see a slowing of medical research discovery. If the subcommittee does not act in 1997, by the year 2000 you will be directing NIH to implement a crash program to replenish the Nation's corps of clinical investigators only to be told that such an effort will take 10 to 12 years. Please do not delay. Construction of the new clinical research center in Bethesda has begun. Please move forward, this year, with funding to rebuild the extramural clinical research capacity of the NIH. I would be happy to respond questions. Thank you. [The prepared statement by William Lowe to follows:] [Pages 96 - 104--The official Committee record contains additional material here.] Mr. Miller. Thank you very much, Dr. Lowe. I think the more that you and your colleagues can do to help educate everyone in this country that NIH is not just located in Bethesda, Maryland, but its funding 85 percent of the money on average, goes to extramural research. A lot of people think medical research is done at medical schools. We need to make them aware, that the money flows from NIH, most of it, out to places like Northwestern and such. So there is strong support. The question is, we have a limited pie. So we will do everything we can. Thank you very much for your testimony. Dr. Lowe. Thank you. ---------- Tuesday, April 15, 1997. WITNESSES PRISCILLA CICCARIELLO, PRESIDENT RUTH NORTON, COALITION FOR HERITABLE DISORDERS OF CONNECTIVE TISSUE Mr. Miller. We will have next the representatives of the Coalition for Heritable Disorders of Connective Tissue. Introduce yourselves again, I have a couple of different names in front of me. Ms. Ciccariello. My name is Priscilla Ciccariello, and I am President of the Coalition for Heritable Disorders of Connective Tissue, which includes seven member organizations, Pseudoxanthoma Elasticum, Marfan Syndrome, Osteogenesis Imperfecta, Ehlers-Danlos, and several others that I won't take time at this moment to reiterate. I want to say that it is an honor to follow Mr. Lowe, because we endorse everything that he is saying there, as well as Dr. DeBakey. He is the one who developed the Dacron tubing which enabled my two sons to live for 20 years plus, and many thousands of other people, both with Marfan Syndrome and other cardiovascular diseases. It is an honor to hear him and to be able to say hello to him. I want to say that I am doing this in memory of Rachel Goodman. Her father is here, and she died at three years of age from Marfan Syndrome, neo-natal Marfan Syndrome, but with wonderful care from Johns Hopkins. I want to introduce Ruth Norton, who is a member of the National Marfan Foundation, and her testimony, with her two sons. Mr. Miller. Ms. Norton. Ms. Norton. I am Ruth Norton, of Newtown, Connecticut. The price I paid to sit in this chair today was the life of my father, my sister, my brother and my 15 year old son. To be with you today meant to have been affected by Marfan Syndrome. In September of 1991, I learned about this killer. It was the first day of school for my three excited sons, and the bus was just minutes from arriving. Suddenly, my son Robert fell to the ground in convulsions and extreme pain. It took the hospital 28 hours to determine the problem, a four foot long spiral tear in his aorta. He was rushed by ambulance to Yale New Haven Hospital. As I rode with him, I watched the team pound on Robert's chest and yell to him to respond. After arriving, I was told the news, he was not expected to live through the night. How did this happen to my healthy, beautiful son? How would I tell him what was happening to his body? How would I tell his two brothers he was dying? How would I tell his dad when he arrived? I listened to the beeps from the ICU monitors tracking the little bit of life still there, as I contemplated this horrible situation. I sat next to Robert, stroking his hair, telling him how much I loved him, holding him, staring at him, grateful for the gentle sound of his breath. When they came to prepare him for surgery, I kissed him until my lips stung. He told me, ``I love you, Mom, very much, forever and ever, and don't you ever forget it.'' I still remember watching him go through those cold steel gray doors. That would be the last time we would see our son alive. I could still feel the sting on my lips. During that time, we began to learn about Marfan's. I was shocked and sick to find out that it is a heritable disease that came through me. It did not have a name then, but at the age of 13, I lost my father to Marfan's. Through skilled doctors and researchers and information from the National Marfan Foundation, our family was educated quickly and then tested. My other two sons do not have Marfan's, but of course, I do. As we informed extended family, we learned how difficult it is to find a place that can test for Marfan's and even then to find that the tests done are not always conclusive, but merely guidelines to watch. We learned that my sister, Jan, and my brother, Rich, were affected, along with some of their children. Aunts, uncles and cousins and their children were being checked and several diagnosed with Marfan's. In the past five years, my family has lost time and time again. My sister Jan and I decided we would go through this together since we were so much alike. It was nice having someone to talk to and share the terrifying feelings you get. We thought we had it all figured out, and surgery was the plan. But one year after losing my son, my sister Jan collapsed and died from a dissection of the aorta. My world was collapsing around me, and I was scared. But to the rescue came my brother Rich. He and I developed a deep bond that year. We decided that time was very precious, and we started spending a lot of time together, playing and laughing and learning to live again. He cherished my boys, and each time we flew out to be with him he would spoil them silly. Just three and a half months ago, I flew out to be with Rich again, but this time the reunion would be in the intensive care unit of UMed Hospital. It was as if some very cruel person had hit the replay button and I was to watch the same thing again. Rich had suffered a massive dissection of the aorta. I sat next to Rich, stroking his hair, telling him how much I loved him, holding him, staring at him, grateful for the gentle sound of his breath. This time, however, I was muttering that it was time for us to win this battle. I held him as he sobbed. I listened to him plead, please do not let me die, just do not let me die. Later that day, I held his wife as we together heard those all too familiar words, he is gone. That leaves me, with this horrible killer inside of me. My sons have been robbed of a happy, carefree childhood, as they continually become pall bearers, and as they live in constant fear of losing me, their mom. My husband is in agony over the reality of it all, and the possibility of losing his life's companion. My agony is the thought that another child will die from this. I brought my sons, Lee and Douglas, here with me today. Please let them know that through your help, others do not have to go through our experience. Please do not let them down. I have been forced to bury some of my dreams. Please help the research progress so that other dreams can come true. At this time, there is less than $1 million allocated for Marfan research. This is out of balance with the funding that is allocated to other genetic disorders. Marfan Syndrome is a life-threatening, debilitating disorder. Over 200,000 people are affected with Marfan's Syndrome and related disorders. There are two primary institutes that provide extramural research on Marfan's Syndrome. One is the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the other is the National Institute on Heart, Lung and Blood. We are recommending a 9 percent increase over the current fiscal year. Thank you, and I will be happy to answer any questions that you have. [The prepared statement by Priscilla Ciccariello follows:] [Pages 108 - 116--The official Committee record contains additional material here.] Mr. Miller. You certainly have personalized the importance of biomedical research. Let me say, you have two sons, Lee and Douglas. Will you introduce yourselves? You are named in the record anyway. Mr. Lee Norton. My name is Lee Norton. Mr. Miller. And where do you go to school? Mr. Lee Norton. I go to Newtown High School. Mr. Miller. What year? Mr. Lee Norton. Junior. Mr. Miller. And is it Douglas? Mr. Douglas Norton. Yes, I am Doug Norton, and I go to Newtown Middle School. I am currently in the eighth grade. Mr. Miller. Thank you very much for coming today. Thank you very much for your testimony. And good luck to you. ---------- Tuesday, April 15, 1997. WITNESS JAN BRESLOW, M.D., AMERICAN HEART ASSOCIATION Mr. Miller. Next we have Dr. Breslow, President of the American Heart Association. Dr. Breslow. I am testifying on behalf of the American Heart Association. The American Heart Association is a not-for- profit voluntary health organization with 4.2 million volunteers. Our mission is to fight heart disease and stroke, which kill one out of two Americans. The American Heart Association wishes to thank this committee for championing the cause of NIH. However, I come before you today with three disquieting emotions: alarm, dismay and a sense of urgency. I am alarmed because I see a dramatic increase in the prevalence of heart disease and stroke in the United States, with unparalleled costs to our society that threatens our future. Currently, we have 14 million Americans with symptomatic coronary heart disease and 4 million stroke survivors. The prevalence of these diseases is rising rapidly as various indicators show. In 1979, we had 1.2 million cardiovascular operations and procedures in the United States. Whereas in 1994, there were 4.6 million, almost a fourfold increase. In 1979, we had 2.5 million Americans with congestive heart failure, whereas in 1994, there were 5 million, a twofold increase. Cardiovascular diseases already consume about one out of six health care dollars, with the price tag and medical expenses and lost productivity of $260 billion per year. Hardening of the arteries alone represents four of the top five disease categories for hospital discharges and costs to the health care system for all payors. These figures are alarming enough, but to borrow a phrase, we ain't seen nothing yet. The situation will worsen in the 21st century, as the first group of baby boomers reach the age of 65 in the year 2010. Moreover, the last 10 years has seen alarming increases in the United States of cigarette smoking, obesity and physical inactivity, especially in the young, portending even greater increases in heart disease and stroke than expected. My second emotion is dismay. I am dismayed because the National Institutes of Health, acting under the misimpression that heart disease and stroke are solved problems, have for the last 15 years underfunded research into the basic causes, prevention and treatment of these important diseases. For example, I find it appalling that from 1986 to 1996, the overall NIH budget went up 36 percent, corrected for inflation, whereas funding for the heart program went down 5.5 percent. If the heart program had simply kept pace with the rest of the NIH over this same 10 year period, in 1996 alone, $303 million more would have been spent to fight heart disease. Stroke has been similarly underfunded. The consequence of this chronic underfunding has been a gutting of research programs. This has been particularly devastating to young people, and has discouraged them from entering the field. In 1994, there were only 123 traditional research grants to investigators under the age of 40 in the heart program, or roughly one per medical school to fight the Nation's number one killer. This is almost a two-thirds decrease from the number just 10 years earlier. We have lost almost the whole next generation of researchers who will not be available to carry on the fight. My final emotion is a feeling of urgency. Our Government's response to the heart disease and stroke problem today will define the health and well-being of our citizenry in the next century. We have a choice between a Nation of physically and mentally healthy citizens capable of enjoying active and productive lives, living as independently as they wish late into their lives, or a population of frail elderly individuals, disabled by the end result of heart disease, which is congestive heart failure, and the end result of stroke, which causes both physical impairments and dementia. I also feel a sense of urgency about the scientific opportunities in heart disease and stroke research that glitter before us but are not realized. Opportunities that will result in prevention, better treatment and even cures. Research that will lead to ways of preventing heart artery blockages before they begin, the development of new treatments to rescue new patients from congestive heart failure. The identification of genes that cause congenital heart disease, and more knowledge about the components of heart healthy living and how to get people to comply, to name but a few. The American Heart Association has joined with Research America to call for a doubling of the Federal biomedical research budget by the year 2002. And we applaud similar legislative efforts on behalf of the NIH coming from Congress. In addition, we are calling on Congress to help us correct the mistakes of the past and make sure that research funding for heart disease and stroke receives its proper emphasis in the future. Thank you. [The prepared statement of Jan Breslow, M.D., follows:] [Pages 119 - 129--The official Committee record contains additional material here.] Mr. Miller. Thank you, Dr. Breslow. As mentioned earlier, we visited the CDC yesterday. I am glad you brought that issue up, because it is not just biomedical research it's the communication of the knowledge we have. Let me ask you a question. AIDS is going through something similar right now, that people think we have cured AIDS almost, with the protease and all that, if you see the graphs, it is changed. And that has happened with the heart. I guess statistically, the number of people, there has been great advances. So I guess you are saying that---- Dr. Breslow. Well, there is a myth that heart disease has gone away. You hear the statement that there has been a 50 percent decrease in heart disease deaths. But that is untrue. Basically, they are referring to the age corrected death rate for heart disease. And the age correction is done back to the U.S. population, 1940, when we had about a fourth as many people over the age of 65. In fact, heart disease deaths have never fallen in the United States. They were up 60 percent worldwide in the last 30 years. And the prevalence of the disease is skyrocketing. So this is really going to be the defining health issue of the 21st century. This myth that is out there is that heart disease is going away, couldn't be further from the truth. It is already one out of six health care dollars and rising rapidly; 4.6 heart operations and procedures a year in the United States, angioplasties, bypasses and coronary catheterizations. We feel a great urgency and really a dismay at the nonchalance with which the NIH has approached this problem, and we need the help of Congress to rectify what we think is a very desperate situation. Thank you for the audience today. Mr. Miller. Thank you very much, Doctor. ---------- Tuesday, April 15, 1997. WITNESSES ALAN P. BROWNSTEIN, AMERICAN LIVER FOUNDATION NICK LaRUSSO DAVID McKNIGHT Mr. Miller. Next we will have Alan Brownstein, President and CEO of the American Liver Foundation. Welcome. Will you introduce the gentlemen with you, please? Mr. Brownstein. Thank you very much. I have Dr. Nick LaRusso, who is the President of the American Association for the Study of Liver Diseases, and Mr. David McKnight, who has had liver disease and has received a liver transplant. He is an attorney from Birmingham, Alabama. And Dr. LaRusso will begin our testimony today. Thank you. Dr. LaRusso. Good morning, Mr. Chairman. My name is Nicholas LaRusso, and I am a Professor of Medicine and of Biochemistry and Molecular Biology and Chairman of the Division of Gastroenterology at the Mayo Medical School Clinic and Foundation in Rochester, Minnesota. I am appearing before the subcommittee today in my capacity as President of the American Association for the Study of Liver Diseases, which is an organization of academic and practicing physicians, surgeons, pediatricians and pathologists, as well as biomedical researchers with an interest in diseases of the liver and biliary tree. Like most physician members of the AASLD, in addition to providing clinical services to patients with liver disease, I am involved in biomedical research and have been the fortunate recipient of an ongoing support from the NIH as a trainee and as an investigator for over 20 years. I would like to begin by echoing the previous speakers and expressing the gratitude of myself and the members of my organization to you and the other members of the committee for the exceptional leadership that you have provided in funding biomedical research, and in particular in supporting the NIH and the CDC programs. It is reassuring in these times of fiscal austerity for physicians and scientists to appreciate that we have political leaders who understand the importance of biomedical research. With regard to liver disease research, important progress and discoveries have been made in the last two decades. It is fair to say, I think, that we know more about what causes liver and biliary tract disease and can do more to prevent it, diagnose it and treat it, than ever before in the history of the specialty. That is largely due to the support from the NIH and your committee. Let me give one example of a recent discovery of great importance, namely, the discovery of the Hepatitis C virus. We now can diagnose Hepatitis C. And we can treat it. And perhaps equally importantly, we can prevent this transmission through blood transfusions because of the advances made in our understanding of the virus. You may recall, Mr. Chairman, that a consensus conference on Hepatitis C occurred last month at the NIH. And you may have seen the front page story in the Washington Post with the headline, ``Researchers Fear that Hepatitis C Epidemic Looms.'' The consensus conference made seven recommendations for additional research and based on estimates made by NIH and CDC for fiscal year 1998, costs of funding these new recommendations, as well as providing the professional judgment budget for viral hepatitis would total $21.9 million more than is included in President's fiscal year 1998 budget request. These recommendations are detailed in our joint prepared statement, and I am not going to discuss them in specific, except to say, however, that the recommendations include additional research for the development of a vaccine in Hepatitis C to prevent the onset of this disease. We already have effective vaccines for Hepatitis A, and for Hepatitis B. We are told by NIH that the cost of research focused on Hepatitis C vaccine development would require an additional $2 million over the President's request. There are many liver disease research issues, other than those related to hepatitis, that could be significant and could be addressed with targeted research. In particular, pediatric liver disease and liver cancer. Let me close by again thanking you for providing guidance to the NIH. One significant outcome of the subcommittee's leadership is the schedule of an NIH mini-symposium in June of 1997 on liver disease research. This symposium will bring together leaders in the community to develop an action plan for liver disease research. We will make that information available to the subcommittee from this consensus conference as soon as it's completed. I'd like to now ask my colleague Mr. Brownstein to make a couple of comments. Mr. Brownstein. First we have Mr. McKnight, then I will close. Mr. McKnight. Mr. Chairman and other staff members, it's a privilege to be before you today. I guess I, along with Ms. Breedlove and the Nortons, are here to remind you all that behind all these facts and figures, I do not know how you keep up with all those, but behind all those facts and figures and statistics, there is a person with a story and a family. I guess my story is that liver disease can happen to anyone. Eleven years ago, I had just passed the bar exam, my wife and I were expecting our first son, we had bought our house, and I led an active life as far as exercise. I did not drink, I did not smoke, and I never experimented with drugs. I had one sexual partner and continue to have one sexual partner in my whole life, my wife. In April of 1987, I began experiencing flu-like symptoms, which rapidly deteriorated to the point where in July of 1987, I was hospitalized and told I only had a few weeks to live. Thankfully, I had an option. I think that option is due to your hard work, your predecessors' hard work on this committee, and the funding for research that they provided. I was able to have a liver transplant. Within one year after my liver transplant, I was back to exercising regularly and working full time. I currently coach two Little League baseball teams. I teach a Sunday School class and I volunteer for charitable organizations. The point of my story would be that the increased research funding that you provide not only saves lives but enables people to contribute back to the community, these various activities that I have. And I am reminded today being April 15th, that I have paid taxes for 10 years, since I have had the transplant. I look forward to paying them for 40 more years. I thank you for the research that this committee and your predecessors have provided before. I realize that we are preaching to the choir, and I thank you for all your hard work and effort. I hope that you will consider our request. Mr. Brownstein. Thank you. And by the way, I do know that he is a taxpayer, because in case he did not make his plane back to Birmingham, he brought his forms with him today, they are in his briefcase. [Laughter.] I am Alan Brownstein, I am the President of the American Liver Foundation. And we are dedicated to the prevention, treatment and cure of hepatitis and other liver and gall bladder disease through research and education. As you have just heard from Dr. LaRusso and Mr. McKnight, we are here as the unified voice of patients and medical leaders through our network of chapters throughout the United States. In closing our testimony today, I will summarize our recommendations for fiscal year 1998 funding with the details provided in our written statements. First, for NIH, we are requesting additional funding support in the following areas: $21.9 million to make viral hepatitis research a priority and to implement the research recommendations of the Hepatitis C Consensus Conference; $13.6 million to implement the research agenda for liver diseases other than hepatitis, with an increased focus on children's liver disease. For CDC, we recommend $17 million needed to immunize the 4 million 11 and 12 year olds in America against Hepatitis B. Two million dollars is recommended to expand surveillance and epidemiologic studies for chronic liver disease. One million dollars to support the hepatitis and liver diseaseinformation center in keeping with the recommendations of the Hepatitis C Consensus Conference. And lastly, for the Health Resources and Services Administration, we are asking for $5 million to support increased efforts to stimulate organ donor awareness. There are 50,000 people waiting for organs in America. There are 7,900 people waiting for livers in America, as I speak with you today. So in closing, I thank you once again for giving us the opportunity to speak on behalf of the 25 millon Americans from all walks of life who are affected by liver diseases. Thank you very much. [The prepared statement of Alan Brownstein follows:] [Pages 134 - 142--The official Committee record contains additional material here.] Mr. Miller. Thank you all very much for being with us today. We appreciate that. ---------- Tuesday, April 15, 1997. WITNESS GERARD TURINO, M.D., AMERICAN LUNG ASSOCIATION Mr. Miller. Next we will have the American Lung Association, Dr. Gerard Turino. Welcome. Dr. Turino. Thank you. Mr. Chairman and members of the subcommittee, I am Dr. Gerard Turino, and I am speaking on behalf of the American Lung Association and its medical section, the American Thoracic Society. The American Lung Association and the American Thoracic Society appreciate the bipartisan support that you, Mr. Chairman, and this committee, have shown for biomedical research and public health programs. While concerned specifically about research related to the prevention and control of lung disease, the American Lung Association and the American Thoracic Society believes that medical research is an investment critical to the future health of every American. As the subcommittee reviews funding options for the National Institutes of Health programs, it is important to provide parity for all institutes relative to any funding increases. Lung disease is the third leading cause of death in the United States, responsible for one in every seven deaths. More than 30 million Americans suffer from a chronic lung disease. Lung diseases cost the U.S. economy an estimated $84.4 billion annually. Research can help cut these costs. Lung diseases represent a spectrum of chronic and acute conditions that interfere with the lung's ability to extract oxygen from the atmosphere, protect against environmental or biological challenges, and regulate a number of metabolic processes in the whole body. Lung diseases include chronic obstructive pulmonary disease, which includes pulmonary emphysema, and these are the fourth leading causes of mortality, lung cancers, tuberculosis, pneumonia, influenza, sleep disordered breathing, pediatric lung disorders, occupational lung disease, sarcoidosis, and a problem of growing concern in the U.S., and that is asthma. Asthma is a chronic lung disease where the bronchial tubes of the lungs become swollen and constrict, preventing air from getting into or out of the lung. These obstructive spasms of the bronchi are caused by a broad range of environmental triggers that vary from one asthma suffer to another. Asthma is on the rise. An estimated 14.6 million Americans have asthma; 4.8 million are under the age of 18. Since 1984, the prevalence of pediatric asthma has risen 72 percent. Rates are increasing for all ethnic groups and especially for African American and Latino children. Asthma is expensive. The growth in the prevalence of asthma will have significant impact on our Nation's health expenditures, especially Medicaid. Currently, asthma costs the U.S. $12 billion a year. Asthma attacks bring 1.6 million people to the emergency room of hospitals each year. Asthma kills. Mr. Chairman, you may recall in 1995, the mysterious death of the famous young model, Chrissie Taylor, which was in fact caused by asthma. In 1993, 5,167 children died as a result of an asthma attack. A disproportionate share of these deaths were in African-American families. The good news on asthma is that the research is beginning to bring answers, and with answers comes hope for a new treatment and a cure for asthma. NIH supported research has provided greater understanding of what is actually going wrong in a person suffering from asthma, why exposure to airborne substances causes bronchial inflammation, why the immune system hyper-responds, and what kinds of cell to cell communication mediate this response. Even more promising is that NIH sponsored researchers are beginning to establish linkages between candidate genes and asthma. In the near future, we may expect that this research will identify the gene or genes that cause asthma. Mr. Chairman, we think that a cure for asthma is within reach. Within the foreseeable future, researchers expect to fully describe the unique combination of genetic and environmental factors that can successfully address questions of prevention and cure. To this end, the American Lung Association and the American Thoracic Society will announce anew asthma research initiative at our international conference in May. We are confident that with the successful pursuit of this research initiative in collaboration with NIH and the pharmaceutical industry, a cure for asthma is a realistic hope and expectation. Mr. Chairman, although I have today highlighted research surrounding asthma, NIH sponsored research is making progress against a number of lung diseases. Mr. Chairman, the research community is extremely grateful for the support you and the subcommittee have provided for NIH research. We are concerned that while the NIH research budget has increased, the administrative budget or research management and support function has remained flat. Administrative functions of the NIH play a vital role in the advancement of science, awarding and monitoring grants, ensuring scientific and ethical standards in the research community, developing and disseminating patient and provider educational materials, and a convening state of the art scientific meetings are just a few of the functions that NIH conducts with its administrative budget. If the administrative budget of NIH continues to shrink relative to other NIH activities, the eventual result will be a reduction in the quality of NIH supported science. Mr. Chairman, it is our understanding that the subcommittee and Dr. Varmus have begun a dialogue on how best to resolve this issue. We encourage the subcommittee to find a mechanism to find adequate support for the administrative functions of NIH. At this point I would like to make a few comments about tuberculosis research and control initiatives. Although tuberculosis is a preventable and curable disease, it still persists as a public health problem in the United States. You have no doubt heard of the resurgence of tuberculosis. After years of declining case rates, the number of reported cases in the United States rose by over 20 percent in just seven years, from 22,200 reported cases in 1985 to 25,287 reported cases in 1993. Even more disturbing is the development of multi-drug resistant TB. Multi-drug resistant TB are strains of tuberculosis bacterium that have developed a resistance to the drugs used to treat TB. In the U.S. strains of multi-drug resistant TB are resistant to as many as seven drugs. While TB cases declined nationally, TB cases continued to increase in some areas. Twenty of the 50 States and the District of Columbia reported either no change or an increase in TB cases. 1996 was marked by a sporadic outbreak of multi- drug resistant TB, sporadic cases of strain W, and a deadly TB strain resistant to the best anti-TB drugs. Originally reported in New York, New Jersey and Florida, this organism has now been found in South Carolina, North Carolina, Colorado, Ohio, Pennsylvania, Georgia, Nevada, California and Puerto Rico. To combat TB in the U.S. and eliminate tuberculosis worldwide would require far more than just intensified and widespread use of prevention and control methods. It will also require the development of new drugs to treat these multi-drug resistant organisms. The last new drug developed to treat TB became available in 1972. It will require new diagnostic and preventive technologies and the rapid transmission of new developed technologies to be given to the field for this purpose. In conclusion, Mr. Chairman, lung disease is a growing problem in the United States. It is America's number three killer, responsible for one in seven deaths. The lung disease death rate continues to climb while rates for others, first and second ranked cause of death, such as heart disease and cancer, have been dropping. Overall, lung disease and breathing problems constitute the number one killer of babies under the age of one year. Worldwide, TB kills 3 million people each year, more people than any other single infectious agent. Mr. Chairman, the level of support this committee approves for lung disease programs should reflect this urgency. Thank you. [The prepared statement of Gerard Turino follows:] [Pages 146 - 154--The official Committee record contains additional material here.] Mr. Miller. Thank you, Dr. Turino. Yesterday this committee was in Atlanta at CDC. We heard presentation concerning asthma from NIOSH. It was interesting to see the work they are doing. And of course, we've heard it from NIH. We thank you for the work you are doing in this area, and thank you for coming to testify before us today. Dr. Turino. Thank you. ---------- Tuesday, April 15, 1997. WITNESS PATSY BRANNON, AMERICAN SOCIETY FOR NUTRITIONAL SCIENCES Mr. Miller. Next we Will have Dr. Brannon, with the American Society of Nutritional Sciences, Chairman of Nutrition and Food Sciences, University of Maryland. Thank you for being here today. Ms. Brannon. Thank you, Mr. Chairman. I'm Patsy Brannon. I am a member of the American Society for Nutritional Sciences. And I am also Chair and Professor of Nutrition and Food Science at the University of Maryland, as you mentioned. Today, I speak to you as a member of the American Society for Nutritional Sciences in support of the research budget of the National Institutes of Health. I would like to thank the members on both sides of the aisle who have supported Federal investment in scientific research. Researchers and all of society should be grateful to this subcommittee for their continued support of the NIH budget, especially in these tight fiscal times. The American Society for Nutritional Sciences believes that strong continued support of research should be a primary goal, as Americans continue to face new challenges to maintain health and quality of life in the next century. The American Society for Nutritional Sciences is the principal professional organization of 3,500 nutrition research scientists in the U.S. whose purpose is to develop and extend knowledge and application of nutrition. We are a constituent society of the Federation of American Societies of Experimental Biology, known to you as FASEB. And leaders of our Society participated in the FASEB Consensus Conference on Biomedical Research Funding. The American Society for Nutritional Sciences endorses FASEB's recommendation for a 9 percent increase in NIH funding in fiscal year 1998 over the funding for fiscal year 1997, in order to allow funding for new research projects at a success rate of 30 percent. I must add, it has been some time since new projects were funded at NIH to a success rate of 30 percent, probably over 10 years. And one thing that I would like to focus on in my testimony today is the value of nutrition research and the role of an expanded commitment to nutrition research at NIH. Although mostly disciplinary, nutrition research has the goal to understand the role of appropriate nutrition in growth, development, quality of life, reduction in chronic disease risk and treatment of existing disease. As Congress continues to solve the problem of health care costs, it is important to recognize that continued investment in nutrition research is one of the best means of keeping health care costs down. Results from nutrition research have already led to cost saving preventable health care for chronic diseases like cancer, obesity, and heart diseases. New advances and research approaches are dramatically changing the direction of nutrition research, and promise continued advancement in disease prevention for the continued investment in this research. Techniques like biotechnology, cellular and molecular biology allow us to examine the roles of essential nutrients in people of all ages, and allow us to determine the interactions of nutrients in genes to modulate disease risk. I would like to give just some brief examples of developments in nutrition research funded by various NIH institutes. One of the most exciting developments in the past five years has been research on causes and treatments of obesity, the cloning of the ob gene, the obese gene in mice, and identification of its homologue on humans has led to major breakthroughs in our understanding of the development of obesity. This gene yields a protein product called leptin. I think most people have heard some press about this. It is a satiety factor controlling food intake that acts through the central nervous system. Injections of leptin to obese mice results in pronounced weight loss. And rapid progress is occurring in understanding leptin's role in humans. It is becoming clearer that in humans, there is actually a resistance to leptin that may be analogous to the resistance of insulin in non-insulin dependent diabetes. At last week's experimental biology meetings, there was much excitement and considerable results from research supported by NIH on the role of leptin in humans and possible treatments that may arise. These results may lead to effective medical therapies in people testing for genetic predisposition to obesity and reducing the prevalence of many chronic diseases for which obesity is a risk factor, such as non-insulin dependent diabetes, cardiovascular disease, cancer, gallstones and stroke. Another example of results from nutrition related research include the NIDDK landmark diabetes control and complications trial that has shown that careful control of blood glucose management can lead to a 50 percent decrease in the risk of life threatening complications in this disease. Exciting study of the potential of bioactive flavonoid compounds found in fruits and vegetables in modulating the response of prostate cells to antigens may lead to new directions in prostate cancer prevention. Importantly, folic acid supplementation reduces the occurrence of neural tube defects, like spina bifida, which are common birth defects. Current research is investigating the interaction of folic acid and methianinine in the development of the neural tube. We really hope that at some point, we can prevent neural tube defects, such as the ones experienced by Taylor, who spoke earlier today. These are a few of the many advances nutrition research has accomplished. Despite these achievements, we need to continue to invest in nutrition research because of the challenges that are going to face us in the 21st century. We have an increasing population, we have an increasing international competitiveness, environmental concerns are with us, and minimizing health care costs through disease prevention remain an important component of what we face. As we understand more about the genetic basis of chronic diseases, and we will understand more through the human genome project being supported by NIH, we will need to understand better how nutrition and diet can decrease disease in those genetically at risk. Answers to these problems can be found through research supported by NIH and other Federal agencies. To reiterate, the American Society for Nutritional Sciences strongly supports the Federal investment in competitive peer- reviewed grant programs that support scientists in the most promising areas of research. We believe that the best results can come from competitive peer-reviewed research. Even so, and even with the most advanced developments happening today, there are still insufficient funds to keep the research going. The inability to obtain research funding is taking its toll. As you have heard from other testifiers, an important area where this toll is being felt is in the Nation's valuable assets. The next generation of scientists, as young scientists, are discouraged by the limited available funding and seek other careers. A second area where this toll is being felt is on the renewal of meritorious grant applications which sometimes just missed fundable scores and must be resubmitted, leading to a delay of over a year in the ultimate funding of these projects. We support developing mechanisms of interim awards and partial funding of renewals of meritorious grant applications that fall just below the threshold for funding. Although we face tight fiscal constraints, we certainly understand the difficult choices that the subcommittee faces. The American Society for Nutritional Sciences believes our goal to increase funding is a legitimate request that will enable NIH to make the most of recent discoveries, provide foundations for future breakthroughs, and train the young scientists needed to make these breakthroughs to solve the new challenges we will face as new diseases emerge. We thank you for the opportunity to present our views. I personally thank you for the previous support this subcommittee has shown to NIH. [The prepared statement of Patsy Brannon follows:] [Pages 158 - 164--The official Committee record contains additional material here.] Mr. Miller. Thank you very much, Dr. Brannon. ---------- Tuesday, April 15, 1997. WITNESSES COLLEEN MORTENSEN, AMERICAN SOCIETY OF CLINICAL PATHOLOGISTS LINDA FELL Mr. Miller. Next, from the American Society of Clinical Pathologists, Colleen Mortensen. Ms. Mortensen. Mr. Miller, my name is Colleen Mortensen, and I am a medical technologist at Great Plains Regional Medical Center in North Platte, Nebraska. I am a recent graduate of the medical technology program funded by the Title VII Allied Health Project Grant, and Linda Fell is with me, today, she is the education coordinator for the Division of Medical Technology at the University of Nebraska Medical Center in Omaha. I just hope that you will indulge me for a few minutes while I explain why I am here today. I am a native from Omaha. I went to school at Creighton University in 1971. I was unable to complete my degree at that time, because both my parents passed away. I married a man from Western Nebraska and we had four children. My husband is a fourth generation farmer near Curtis, Nebraska. And if you are not familiar with the territory, I will explain to you where we are. I am six hours West of Omaha. The nearest town with a university is Kearney, Nebraska. It is 90 miles away. My job is 40 miles away from our house, and I drive 30 of that on dirt roads and I do not see anybody. In a recent snowstorm that we had, our electricity went out. We were out of electricity for 17 days. We were the last ones on the line to come back. So you have kind of an idea where I live. And I am not complaining. I like living in rural Nebraska. After my taxi ride over here, I am anxious to go back. Once my children were in school, I wanted to continue my education. Driving back to Omaha to attend Creighton or the University of Nebraska Medical Center just was not a possibility. Then I heard there was a special program the University of Nebraska was offering where I could study in rural Nebraska. This program was awarded startup funds by the Title VII Allied Health Project Grant program. With this, I could go and do a student lab in Kearney, Nebraska, which is 90 miles from my house. And there the students received an education via satellite and a curriculum. I was accepted into the program at age 40. I had to do a year of upgrading my education, which was a 180 mile round trip every day for a year. I was able to continue my education in medical technology and because of the Allied health program rural encouragement, I was able to finish my clinical rotation in North Platte, Nebraska. North Platte is a town of about 25,000 people, and they have a lot of difficulty finding qualified individuals to work in their hospital laboratories. The Great Plains Regional Medical Center provides services for people who live in Nebraska, Wyoming and Kansas. A lot of our laboratory personnel provide services using a small plane to get to their outlying clients. I am pleased to tell you now, I am a professional. I am a nationally certified medical technologist. I work at Great Plains Regional Medical Center in North Platte. In my spare time, I do use some of my skills in the town that I live near, it is Curtis, Nebraska. I draw blood for a nursing home, which in the past was unable to have their elderly patients drawn on a regular basis, because they did not have anybody who was capable of doing this. Ms. Fell. With the $358,000 awarded in 1992 to the University of Nebraska Medical Center Division of Medical Technology from the Allied Health Project Grants, 45 students graduated from our rural education program. Of these, 93 percent are currently working in rural communities. Because of the initial funds from the Allied Health Grant, the success of this program has increased over the years. Our rural education program is now self-sufficient. This program has increased its percent of graduates accepting jobs in rural areas from 8 percent prior to the grant to 50 percent in 1996. The Allied Health Project Grants program has been effective in addressing the training and educational needs of Allied health personnel, but further strides in funding are still needed to increase the number of Allied health professionals to an adequate level. In light of the success of these programs and the continuing need for additional Allied health professionals in our Nation's health care delivery system, we urge you to continue funding the Allied Health Project Grants program at $10 million for fiscal year 1998. Thank you for your consideration. We would be pleased to answer any questions. [The prepared statements of Colleen Mortensen and Linda Fell follows:] [Pages 167 - 178--The official Committee record contains additional material here.] Mr. Miller. Thank you. I appreciate your bringing to our attention the issue of rural health in this country. We talk about medical centers so much here today, but there are some unique problems, and I admire you for what you are doing, to go back to your education. I am glad that we were able to help in some little way. Ms. Mortensen. Well, there is not a lot of people out there, and I kind of feel like a flower blooming on the prairie. Mr. Miller. Congratulations. Ms. Fell. Thank you for all your help. Mr. Miller. Thank you. ---------- Tuesday, April 15, 1997. WITNESS HAROLD HELDERMAN, M.D., AMERICAN SOCIETY OF TRANSPLANT PHYSICIANS Mr. Miller. Next we will have Dr. Harold Helderman, American Society of Transplant Physicians. Dr. Helderman. Thank you, Mr. Miller. I appreciate the opportunity to address you on behalf of the American Society of Transplant Physicians, called the ASTP. And I commend your patience and forbearance for listening to this laundry list of requests and requirements in the field of biomedical research. I shall be another one of the plaintiffs before you. I am Hal Helderman, I am a Professor of Medicine at Vanderbilt University. And I am a Medical Director of the Vanderbilt Transplant Center, which I partnered with Senator Bill Frist, before he ran for office. But more pertinent for this exercise, I am the President elect of the American Society of Transplant Physicians, which has no governmental support, was established in 1982, and currently has a membership of above 1,000 professionals physicians, surgeons and scientists, who run the gamut of disciplines from cardiology, hepatology, nephrology, pulmonology, infectious disease, histocompatibility and basic research. Mr. McKnight, who was here earlier, is just an example, a physical embodiment of some of the things that my society does over the years. I must tell you, in parentheses, both my society and I personally thank the society for its support of the NIH and its research efforts over many years. My entire career has been basically funded by the NIH, from training through the research that I was able to do at the basic lab, and clinical lab. But important for transplantation, I must tell you over the last 20 years, that the transplantation of solid organs has moved from experimental to accepted therapy, with over 200,000 organ transplants being done in the last quarter century. Twenty thousand done last year alone. The success with this procedure has improved greatly over the years, and now almost enjoys success rates of between 75 and 98 percent, depending on the organ. Realization of the improved survival for people with end stage organ disease has led to a tremendous increase in the number of patients placed on transplant waiting lists, increasing from 16,000 in 1988 to over 51,000. Deaths of patients on the list, not as lucky as Mr. McKnight, has increased from almost 2,900 in 1993 to 3,500 in 1996. Mr. Miller, that translates to 10 patients dying every day in the United States from the lack of an organ. The overwhelming limitation to being able to offer this life saving and enhancing procedure to more patients is the shortage of available donors and the disparity between supply of available donors and those patients who need them. While many individuals and organizations are working on this problem, we continue to seek more support and funds for investment to enhance organ donor awareness and to improve the public trust in this process. We also strongly believe that research in transplantation leads to solutions which save lives. In our written testimony, we have identified a number of clinical and research areas for your interest. I would like this morning, or this afternoon, to highlight several of the most important of these for your consideration. First, in the clinical arena, our priority is the extension of clinical trials in new immunosuppressive strategies to other organs. Presently, there are initiatives in transplantation, in clinical trials, and in kidney transplantation alone. We need to move these trials into the other organs, such as the liver that you saw was implanted into Mr. McKnight. Now I would like to turn to the area of basic research and highlight two areas for your interest. First, let me talk about chronic rejection. For most solid organs transplanted, chronic rejection continues to be the major cause of long term graft loss, which costs the taxpayer many millions of dollars. Research into this area must remain a top priority. New approaches are being examined, including gene therapy and the marvels of molecular biology. We call for more research into chronic rejection. And this kind of research is another area in which the NIH and private industry can partner to enhance outcomes. A second highlighted area is the area of zenotransplantation, which is the transplantation of animal organs and tissues into man. The increasing disparity between the number of patients listed for transplant and the available donors leads to an increasing number of patients, as I have already detailed, dying from the waiting list, nearly 10 per day. Use of organs and tissues from non-primate animals could provide an immediate resource available for patients with the critical needs for a life saving transplant. Then NIH needs to continue and have increased support in this important area of exploration. We must learn the immunologic barriers in xenotransplant, strategies to overcome these barriers, and most importantly, safeguards for the American populace with respect to the possibility of xenoinfections, infections brought from animals into man. I have tried to outline for you some of the major areas of clinical and basic research in extra-renal organ transplants that need increasing funding to help solve the problems associated with transplantation. Although expensive, transplantation is cost effective, and may be the only hope for not just improved survival for many patients, but for a chance for patients to raise their families and return to gainful employment and yes, even pay their taxes. The ASTP believes that we are on the threshold of many important advances in our understanding of the problems posed by the transplanted organ, and research is critical to making this option available to more people. There can be few areas more visible, truly life saving areas, with dividends and money invested in research than the field of transplantation. I thank you for your previous support and for the being able to testify to this committee. [The prepared statement of Harold Helderman follows:] [Pages 182 - 190--The official Committee record contains additional material here.] Mr. Miller. Thank you for being here today. And we've come a long way in the area of transplant. A long way to continue, though, I guess. Thank you very much. Dr. Helderman. Thank you, sir. ---------- Tuesday, April 15, 1997. WITNESS DIANA S. BEATTIE, ASSOCIATION OF AMERICAN MEDICAL COLLEGES Mr. Miller. Now we will have Dr. Beattie. Ms. Beattie. Good afternoon, Mr. Chairman. My name is Diana Beattie. I am the Professor and Chair of Biochemistry at West Virginia University School of Medicine, another rural State with different kinds of problems. This morning, I am representing the Association of American Medical Colleges (AAMC). The AAMC appreciates this opportunity to comment on the fiscal year 1998 funding for the NIH for health professions education and the Agency for Health Care Policy and Research. The AAMC thanks the subcommittee for its continued support of these programs and in particular, Mr. Chairman, we thank you for your leadership on behalf of medical research. The Federal investment in medical research through the NIH continues to yield the abundance of fundamental and applied knowledge that few of the advances in the practice of medicine that have distinguished the United States globally. In addition to its enormous benefit to the health of the American people, NIH sponsored research also continues to provide the basis for much of the success of the biotechnology in pharmaceutical industries. Still, America faces serious health problems, as we have heard this morning. New threats constantly appear. Congressional support for medical research has produced a wealth of scientific opportunities to answer these challenges. A testimony to the abundant opportunities available is the NIH Director's professional judgment budget, which calls for a 9 percent funding increase in fiscal year 1998. The AAMC endorses the recommendation of the Ad Hoc Group for Medical Research Funding for a 9 percent increase in the NIH budget. The AAMC believes that this budget represents the most reliable estimate of the level of funding needed to sustain the high standards of scientific achievement embodied by the NIH. The Ad Hoc Group proposal would provide additional support for peer-reviewed, investigated, and initiated basic research, which asks questions about the fundamental cellular and molecular events of life, which are essential toward progress in conquering disease. Other areas of concern include clinical research and the research infrastructure. With regard to the research infrastructure, the AAMC urges the subcommittee to pay particular attention to the needs of the National Center for Research Resources, which provides support for the general clinical research centers program and other essential elements of a vigorous research environment. The transformation of the health care system to a market driven price competitive structure poses a significant threat to the ability of medical schools and teaching hospitals to maintain an environment for research and innovation. There is a growing sense that changes in the health care marketplace that are endangering this basic support. The AAMC strongly urges the Congress to review the biomedical research support grant, and the BRSG program, as a potential model for a program of flexible institutional support. The geographic and specialty maldistribution of physicians in the United States are critical issues facing both the Congress and the Nation. The AAMC urges the subcommittee to provide additional funding for the National Health Services Corps and the Health Professions Education programs authorized under Title VII and VIII of the Public Health Service Act, which play a major role in addressing these problems. The AAMC thanks the subcommittee for restoring funding in fiscal year 1997 for the Title VII and VIII health professions and nursing education programs. The AAMC joins the health professions and nursing education coalition in urging the subcommittee to continue its support of the Title VII and VIII programs by providing at least $302 million for fiscal year 1998. This represents a 3 percent increase over fiscal year 1997, which is about inflation. The drive to cut health care costs raises concerns about the quality and appropriateness of care and the choices available to consumers, as we are learning about constantly in the news. The Agency for Health Care Policy and Research, (AHCPR), directly responds to these concerns. AHCPR is charged with sponsoring health services research designed to improve the quality of health care, decrease health care costs and provide access to essential health care services. The AAMC believes strongly in the value of health services research, as this Nation continues to strive to continue to provide high quality health care for all of its citizens. The AAMC endorses the Friends of AHCPR recommendation for fiscal year 1998 funding level of $160 million for AHCPR. In addition, we urge the subcommittee to limit the transfer of funds to AHCPR from the so-called 1 percent evaluation set aside in the public health service. The AAMC recommends that funding for the agency should be provided directly through the regular appropriations process. The AAMC appreciate the continued support the subcommittee has given all of these programs. And we look forward to working with you on them. Thank you. [The prepared statement of Diana Beattie follows:] [Pages 193 - 202--The official Committee record contains additional material here.] Mr. Miller. Thank you very much for being with us, Dr. Beattie. We appreciate it. I am sorry we are running a little over time today. ---------- Tuesday, April 15, 1997. WITNESSES RICHARD GUERRANT, M.D., AMERICAN SOCIETY OF TROPICAL MEDICINE AND HYGIENE THOMAS H. HUNTER, PROFESSOR OF INTERNATIONAL MEDICINE Mr. Miller. Dr. Guerrant, welcome. Dr. Guerrant. Thank you, and good afternoon. I am impressed by your patience, Mr. Miller. I am Dick Guerrant, and I am a physician researcher who works, of all things, diarrheal diseases at the University of Virginia and in the Northeast of Brazil. As President of the American Society of Tropical Medicine and Hygiene, I represent what is probably 3,000 or more of the most dedicated, adventurous individuals in our society. There are physicians and investigators who stand between us, the American public, and some of the gravest threats, I think, to our future. People like Dr. James Hughes, whom I believe you met yesterday, as Director of the Centers for Disease Control, the Center for Infectious Diseases. Jim, just parenthetically, got his infectious diseases training on our NIH training grant at the University of Virginia as my first fellow, working on diarrheal diseases, of all things. I am here today to really continue this theme of urging your continued support, very important support, of these vital activities, especially in tropical and emerging infectious diseases that are fostered by the NIH and by CDC. We really have made tremendous progress in our battle against infectious diseases. However, the microorganisms are, as we have been hearing, are getting resistant to our best drugs. And the globalization of our food supply and growing international travel really bring these once very distant infections right up to our doorsteps and onto our dining room tables. From working for 30 years, it is hard to believe, in Zaire, Bangladesh and Brazil, I really have developed an increasing concern about the threats that tropical and emerging infectious diseases pose to us right here in the United States. Not just Ebola virus, that gets all the press, it seems, but hemorrhagic e-coli in our hamburger, the cryptosporidium parasites in the Milwaukee water, it was the water that made Milwaukee famous. And that parasite is completely resistant to our best efforts at chlorination of our water supply. Hepatitis A, we were hearing earlier today, has been carried by Mexican strawberries to school children in Michigan. And cyclospora parasites were brought last year by Guatemalan raspberries right to the tables of whom the most affluent people in our society and over 1,400 people through the United States and Canada. So it is quite remarkable when you look back 40 years ago, we only had about 300 or 400 items on our supermarket shelves. Today, that is over 30,000 items on our average supermarket store shelves. The kiwi fruit that we enjoy in the middle of January right around here did not come from the Fairfax County farms, it came from areas that we worry about. Two of the greatest threats are diarrheal diseases and malaria, that I would just like to mention very briefly. Supported by the NIH, we work in Fortaleza, in the Northeast of Brazil. I could not bring them with me, but here are the children with whom we work. It is not surprising, when you start looking at the conditions where children live, that diarrheal diseases are the biggest health problem and the biggest cause of death worldwide. It is over 3 million children every year. I would have to go through a calculation, because I do not comprehend it, that is more than 9,000 children each day who die of a diarrheal illness. In fact, probably of even graver concern, are not the ones who die, but one in every four of these children may die before their fifth birthday. The other three who undergo, not one or two, like our kids, but eight or ten malnourishing and dehydrating diarrheal illnesses, in their most formative years of life. It is from studying some of these diseases that we are learning new diagnostics and we're learning about net pathogens, types of e-coli, and a new oral rehydration and nutrition therapy with glutamine that has direct relevance to our patients and our families here in the United States, in hospitals, in nursing homes and in our day care centers. Another enteric infection that we have learned to pay a lot of attention to lately is helicobactor, the H. pylori bacteria that causes ulcers in our stomachs. It is not treatable, we can eradicate ulcer disease for the savings of millions of dollars. We are learning that we can prevent stomach cancer by controlling this infection. Another huge problem, of course, is malaria. Once nearly eradicated from many countries, it is now returning with a vengeance. The parasite is resistant to our best drugs. The mosquitos are resistant to pesticides. We are really very encouraged by Dr. Varmus' recent attention to malaria and the new NIH initiative on malaria and vaccine development. NIH work, of course, on infectious diseases, is focused mainly in the Institute of Allergy and Infectious Diseases, where they have tremendously important key international collaborative research programs like ours, as well as programs on emerging diseases. Of course, that is the main agency for vaccine development. In addition, NIH supports the Fogarty Center, with key international collaborations being built. Mr. Miller. I have to make an urgent phone call in the next minute or two. And Dr. Maul is here yet, too, if you will give me a couple of minutes to make a phone call I have got to complete by 12:30, and then we will finish. As you know, we were at the CDC yesterday talking about a lot of these same issues. If you do not mind waiting for a few minutes, to allow me make this call. [Recess.] Mr. Miller. I apologize. We will continue. I find this very interesting to sit through. It is like yesterday, the day we spent at CDC, and at Morehouse School of Medicine. Whenever we have an opportunity to go visit NIH or other programs, or in my district when I am up at South Florida, I find it fascinating. Your discussion is very relevant to what was discussed yesterday. So continue, and then we will wrap up. Dr. Guerrant. Well, I am right at my five minutes, I believe. I am very grateful for this opportunity to really support all that has been said about NIH and CDC. Because that is really where the training and the infrastructure is coming from. You saw the devastating nature of those laboratories yesterday that are now being rebuilt, I think thanks to some wonderful leadership there and here. In a summary of that, the Society of Tropical Medicine and Hygiene is really, very, very keenly appreciative of those efforts on behalf of NIH and CDC. It is clear that if we do not have the science, and the international collaborations and the surveillance, we reallyare in trouble. If we can do those things through our existing structures with NIH and CDC, we feel strongly that a 9 percent increase for NIH and the Administration's requested budget for $25 million for CDC is a fantastic bargain. As a member of NIH study section and somebody who works on diarrhea in Brazil, I can say that I do not think there are any dollars that are more carefully and importantly spent. So we really appreciate your tremendous efforts on that behalf. [The prepared statement of Richard Guerrant, M.D., follows:] [Pages 206 - 215--The official Committee record contains additional material here.] Mr. Miller. Thank you very much. Dr. Guerrant. Thank you. ---------- Tuesday, April 15, 1997. WITNESS KIMBALL I. MAUL, M.D., AMERICAN TRAUMA SOCIETY Mr. Miller. Dr. Maul, I apologize for your being the last on the list, and I apologize for having to take that short break. Dr. Maul. First let me say no apologies are necessary. My name is Kimball Maul. I am a Professor of surgery and Vice Chairman of the Department of Surgery at Loyola University Medical Center, and I direct the Division of Trauma and Emergency Medical Services there at the Medical Center. I must compliment you on your attentiveness to the presenters today. I have been very impressed how you have withstood the assault. I am actually here on behalf of the American Trauma Society's over 2,000 members to speak in support of improved funding for the Center, the CDC Center for Injury Prevention and Control. However, the perspective I would like to share with you today is not that of the immediate past president of the American Trauma Society, which is a charitable organization dedicated to injury prevention, public education and improved care of the injured, but from the perspective of a practicing trauma surgeon. I work at Loyola University Medical Center, Chicago, which is a level one trauma center that sees over 2,700 acutely injured patients each year. I am on call every fourth night and every fourth weekend. I have a continued exposure to the sadness which trauma causes to the citizens of this country. Trauma means injury, and trauma occurs as a sudden, unanticipated, interruption in life's routine. When you think about that, it is certainly true for the patient and the patient's family and loved ones, but it is also true for those who have to care for the injured, who must be able to react to a sudden interruption in their routine if the patient is to receive the best possible chance of surviving his or her injuries. We now know, through numerous studies, that it is the systems approach to care of the injured, which provides the constant state of readiness of not only the hospital but of the other system components as well, components which must work together in a coordinated manner to assure optimal outcome for the patient. Trauma is the most important, the most tragic and the most costly health problem in this country. I say this knowing full well what has preceded me during today's activities. Let me explain to you why I feel so strongly about these trauma related issues. Trauma's importance as a health care problem is based on some simple, factual observations. Trauma is the leading cause of death in the United States between the ages of 1 and 44 years, and the fourth leading cause of death overall. Trauma causes over half of childhood deaths, and more than three-quarters of teenage deaths. In the context of years of life lost, trauma exceeds that of cancer and heart disease combined. Remember, none of us are immune to this disease called trauma. The tragedy of trauma is very real. The longest walk I take is that short distance from the operating room or the emergency room to the waiting room to talk to a family who has just arrived only minutes before being aware that their mother or father, son or daughter, or some other loved one has been injured. And to have to inform them that the patient has died or may never see again or may never walk again is a compelling call to all of us to do something about the tremendous burden which is borne by so many, day after day, night after night and across this country in our emergency rooms and trauma centers. This sudden, unanticipated interruption in life's routine is all the more tragic when we recognize that much of it is preventable, and if there are life threatening injuries, that trauma care systems can make the difference. Today, only one fourth of our country are adequately covered by organized systems of trauma care. And lastly, the cost of injury in dollars is high as well. Recently, the estimated cost of trauma was over $214 billion a year. And with 150,000 deaths and 3 individuals permanently disabled for every person who dies, and then having 11 million additional people reduced from the work force on an annual basis. You can see why this is such an expensive problem. In the early 1980s, some interesting data surfaced which confirms that we must devise a comprehensive approach to the problem of injury in America. Approximately half the people who die of trauma, die within moments of the incident. These are classified as immediate deaths, and there is nothing that we can do about these. The only way to reduce these immediate deaths is through prevention. And it is preventing the incident in the first place, or reducing the severity, so that they are survivable. The next group of deaths occurs within hours of the injury. These are classified as early deaths. We know that the implementation of trauma care systems can be reduce by 30 percent of these deaths. It is here where rural America is so vulnerable. Because we know that trauma that occurs in a rural setting, without a trauma care system, is more than twice as lethal, for the same injury severity, as injuries incurred in an urban or suburban environment with a system. The last group of people who die from injury die of late deaths, days or weeks later from complex critical care issues. Research into the cause and treatment of infections, organ system failure, etc., can save lives in this group. Where does all this lead? In my opinion, it clearly leads to the need for improved funding for the Center for Injury Prevention and Control. It is only the Center which can bring together the expertise in acute care, injury prevention and epidemiology to design and evaluate interventions for implementation before and after the occurrence of severe injury. It is only the Center that can monitor the need and measure the impact of vitally needed trauma care systems. It is only the Center, which can encourage research and improve care of patients with traumatic brain injury and spinal cord injury, which is the leading causes of trauma deaths and permanent disability respectively. It is the Center where the renewal of attention to this profound health problem must continue. I want to personalize this a little bit. I know that you are from Florida. I do not know if you represent Sarasota or not, but my father died on Saturday, rather suddenly. He was 87 years old. He collapsed at home. Fortunately, my sister was there. The paramedics arrived very promptly, they took him to the Sarasota Memorial Hospital. He could not be resuscitated. He went asystolic and died of a heart attack, I am certain. He was 87 years old, and in a couple of weeks, we were going to celebrate his life. That is a totally different problem than the problem of injury in America, where young people are affected, and if they are not killed, they are rendered permanently disabled. It is those types of tragedies, where you do not have the time to prepare for them, that makes trauma such a devastating problem, and one that has been underfunded for so long. I spoke before this committee, I believe it was this committee and another committee back in the late 1980s, when we were considering the Trauma Care Systems Development Act. That Act was passed. Congress allocated $60 million but it was only funded at $6 million. That legislation has now passed, and the CDC is the logical vehicle to try to continue that important effort. Because trauma systems is really the answer, once you are injured. Congress appears to have, is very attentive but appears to have short memory on some of these things that really need a great deal of attention and are just not getting them. I know you have heard from a lot of people today. There is an old surgical adage called Griffin's Fourth Law, where more people live off disease than die from it, something that is kind of interesting in terms of hearing everyone speak today. But, I certainly request that you consider this request for increased funding for the CDC for a very, very important health problem. Thank you, Mr. Chairman. [The prepared statement of Kimball Maul, M.D., follows:] [Pages 219 - 226--The official Committee record contains additional material here.] Mr. Miller. Thank you. Yesterday, as I stated, we were there, and Mark Rosenberg, who is the head of it, spoke to us at lunch yesterday and was with us, in fact, most of the day. He has been before the committee too. Sarasota is a major part of my District, by the way, and Sarasota Memorial Hospital is a fine public facility that has great community support. But my area has more senior citizens than any other Congressional District in the United States. One thing they do have a certain degree of expertise at, they are not a Level One trauma care center---- Dr. Maul. But, there has been talk about it, has not there? Mr. Miller. There has been, you are right. Some of the concern is the surgery provisions and such. It is not just the ER abilities. There has been discussion, because my home town is Bradenton, which is just 10 miles away. Basically they have to take them up to St. Pete or Tampa. In fact, last week I had lunch with the head of the emergency room at Tampa General Hospital, Tony Mitchell was down visiting, someone I have known for many years. But, there has been that discussion about our area not having a Level One trauma center. Dr. Maul. I am a senior reviewer for the American College of Surgeons Trauma Center Verification Program. I review trauma centers, at least one a month, for the college of surgeons. I am very aware of what is going on down there. Plus, I reviewed the paramedic program in Sarasota as a reviewer for the joint review committee. So I am very familiar with what goes on down there. Mr. Miller. I think they have a real expertise at taking care of senior citizens, more so than maybe the county hospital, which has a much wider variety. They do the best for what they have there. Dr. Maul. I just flew up from there yesterday. Mr. Miller. I am sorry to hear about your father's death. Dr. Maul. He was a remarkable guy. He and I went to Germany last month for a week. I had to speak over there at a couple of places, and he was in very good health, played golf twice a week and everything. But when your number's up, your number's up. Mr. Miller. I have an 87-year-old mother who has been confined to a nursing home for a year, and I am not sure she knows me when I visit her. Reaching 87 is a real milestone, and when your time's up it is easier to go quicker. Dr. Maul. That is right. Thank you very much. Mr. Miller. Thank you very much for your testimony. Appreciate it. We stand in recess until 2:00 o'clock. ---------- Tuesday, April 15, 1997. WITNESSES J. ALFRED RIDER, M.D., CHILDREN'S BRAIN DISEASES FOUNDATION MICHAEL JOYCE CHRISTOPHER CAMPBELL Mr. Bonilla [assuming chair]. Good afternoon. The subcommittee will come to order. My name is Henry Bonilla, of Texas. I will be chairing the subcommittee hearing of public witnesses this afternoon. Mr. Porter is recovering from a back injury. We wish him well and hope he comes back as soon as possible. We have a good list today of witnesses this afternoon. We would like to begin with J. Alfred Rider. Doctor Rider is here to talk about children's brain diseases. My understanding is that Doctor Rider will be accompanied by Christopher Campbell and Michael Joyce. Doctor Rider, before you begin, I just want to remind witnesses of two provisions in the Rules of the House. In addition to their written statement, witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they, or the entity they represent, have received. If there are any questions concerning the applicability of this provision or questions as to how to comply, please contact the subcommittee staff. I believe you are aware of that already, Doctor Rider. Dr. Rider. We have already complied. Mr. Bonilla. Also, Doctor Rider, before we begin, I would just like to remind all witnesses appearing today that in consideration of the time for all witnesses appearing, we would appreciate your statements being kept within the time allotted of five minutes. Any statements submitted for the record will be reviewed by every member of this subcommittee and all staff associated with this issue as well. Doctor Rider. Dr. Rider. Thank you very much. I am Doctor J. Alfred Rider, President of the Board of Trustees of the Children's Brain Disease Foundation. It is a pleasure to testify here for the 20th time in the last 19 years, since 1978, before your committee. I also have with me Mr. Michael Joyce, who is a member of the Board of Trustees, his wife Rosemary, who are the parents of a set of twins, Ian and Joey, with a late infantile form of Batten disease, and Mr. Christopher Campbell, his wife Kim, and their daughter Betsy, also with a late infantile form. I am speaking on behalf of the Children's Brain Disease Foundation, Batten Disease Support and Research Association, and thousands and children and their families who are affected with Batten disease. Specifically, I would like to address the need for continued funding at least at the 1994 level plus a modest increase for Batten disease. It is a neurological disorder affecting the brains of infants, children, and young adults. It occurs once in every 12,500 births. There are approximately 440,000 carriers of this disorder in the United States. It is the most common neurogenetic storage disease in children. Although there are four major types of Batten disease, the usual case is characterized by motor and intellectual deterioration, visual loss, behavioral changes, and the onset of progressively severe seizures, and termination in death in the vegetative state. This irreversible severe illness constitutes an enormous nursing and financial burden to families of afflicted children. Patients may live in this deteriorating state from 10 to 43 years. A major impetus to advance in the study of this disease occurred as a direct result of your committee's perseverance and interest which began to achieve fruition in 1991, when, for the first time, the committee recognized that not enough attention is being spent on Batten disease and they directed the National Institute of Neurological Disease and Stroke to expand its research in this direction. I am happy to say the NINDS heeded your request and solicited research grants. They established a special committee to review Batten disease grants that it felt the usual committees did not have sufficient expertise to make proper evaluations. Numerous applications have been received and a significant increase in money is spent on Batten disease. In 1994, $3.27 million was spent. As a direct result of this, there have been three major, major breakthroughs. There has been isolation of the gene defect in the infantile form on chromosome 1p32 in 1995. Shortly thereafter, the Consortium on Batten Disease isolated the juvenile form on chromosome 16p12.1. And just recently, in the last couple of weeks a group headed by Mark, Gardner, and Ingman have isolated the chromosome for the late infantile form on chromosome 11p15. Much needs to be done yet. The exact genetic defects have to be isolated. We must know what the enzyme defects do and we can then speak of definitive therapy by gene replacement and specific enzyme therapy. In view of these breakthroughs, we are disappointed that the funding for 1996 was approximately 22 percent less than 1994. Consequently, we would like to suggest that the following wording be used in this year's appropriation bill: ``The Committee continues to be concerned with the pace of research in Batten disease. The Committee believes that the institute should actively solicit and encourage quality grant applications, and continue to take the steps necessary to assure that a vigorous research program is sustained.'' The committee has requested that $3.4 million within the funds available to NINDS is spent on Batten disease research. This will allow for $3.27 million for continuation renewal grants, and $197,000 for new grants. It seems ironic that we have had these three big breakthroughs, yet the funding went down 22 percent instead of staying the same or increasing. [The prepared statement of J. Alfred Rider follows:] [Pages 230 - 237--The official Committee record contains additional material here.] Dr. Rider. I think maybe Mr. Joyce would like to say a word, then Chris Campbell. Thank you, sir. Mr. Joyce. Back in 1988 was the first year that I came up to the Hill here with my sons Ian and Joe, my oldest son Connor, and my youngest son Andrew. We sat before William Natcher and a bunch of the other committee members and made our plea. It is ironic that we walked in and so little was known about this disease. We have spent several years fighting for the wording to get in and fighting with NINDS to finally start doing some qualitative research in this area. From 1991 to 1995, two of the genes were found, so it proves that if they could go out and find the researchers that a lot could be done. I just find it appalling that, there is a new head of NINDS and I do not think this is exactly Doctor Hall's fault, for some reason all the momentum has been lost. Everyday we live with the fact of taking care of these children. Ian and Joseph walked into this hearing room and sat at the table and could talk back then. The progression of this disease is such that here they are at the age of 12 years old and they've been in this totally dependent state since they were 6 years old. The life expectancy was 10. There are not any documented cases of any of these children getting past the age of 10. I honestly believe that they are going to stay with us until we find a breakthrough, and that is the genetic cause of this disease, so then meaningful research can be done as a prevention and also as a treatment. Time is running out. I implore you to assist us in getting NINDS back on track. It just confuses me why, when their budget was raised 8 percent last year, we wind up with 22 percent less being spent on this research. We need your help to get them back on track, get them to put a new grant proposal back out there so we can get some meaningful research started back up on this thing. A day does not go by that I rest knowing that not enough is being done. If you look at the cost--we keep Ian and Joseph at home with us--you can not imagine the burden--it is not really a burden when it is your child--but the expense and all that and the heartbreak of this disease. But $150,000 a year is the figure being quoted now for taking care of children as dependent as they are. If you just look at the amount of money that is being spent on taking care of these children and the pittance that is being spent on trying to find a cause to stop this disease, we have our priorities out of whack. So I am asking you to please assist us in our endeavors. I know that in a couple more years we could have something if we can just get their attention. Mr. Bonilla. Mr. Joyce, I appreciate your testimony here today. Rest assured, it has an effect on what this committee may decide. My understanding from staff is that the funding is level, not declining, for this particular area, and I know that it could be interpreted in different ways. But I have an 11 year old daughter and an 8 year old son and I can identify, perhaps not, but at least I do identify with what you're trying to accomplish here. I appreciate your appearing here today very much. Dr. Rider. Chris Campbell will now say a word. Mr. Bonilla. Sure. But we are way over time. Again, I am trying to be considerate of all witnesses appearing here today. Mr. Campbell. I am fine. Thank you. Mr. Bonilla. Thank you very much, gentlemen, for appearing. Mr. Joyce. Thank you, sir. Dr. Rider. I would like to have the staff look at those figures. I have gone over them very carefully and it is 22 percent less. Mr. Bonilla. Thank you, Doctor Rider. ---------- Tuesday, April 15, 1997. WITNESS JOHN SABOLICH, NOVA CARE SABOLICH Mr. Bonilla. We now have John Sabolich, President of the Sabolich Research and Development. It is my understanding that a good friend of yours is a member of this subcommittee, Ernest Istook of Oklahoma. Mr. Sabolich. Yes, he is. Mr. Bonilla. Welcome. We would be pleased to hear from you at this time. Mr. Sabolich. Thank you very much. I understand you have a time limit constraint. Mr. Bonilla. We do have a five minute limitation, Mr. Sabolich, and that is only in consideration for all the witnesses appearing here today. Mr. Sabolich. Okay. Mr. Chairman, members of the subcommittee, I thank you for this opportunity today to speak to some of the exciting results of Federal investment in medical rehabilitation research that results in practical solutions; practical solutions to very expensive problems. My name is John Sabolich. I am a prosthetic orthotist biomedical researcher from Oklahoma City. In 1968, while studying orthotics and prosthetics at Duke University, I decided that focusing on research and development would enable me to help the very people I came to know working by my father's side. I determined that appropriate technology applied in a cost-effective manner would help amputees function better without pain and regain the ability to become mainstreamed and returned back to the workforce. To a great degree, we have already accomplished many of our goals. From our early privately sponsored research has now come a new generation of artificial limbs that are flexible, light weight, and anatomically contoured to the body of the patient. Persons who lose their limbs today now are among the most effective rehabilitated people with disabilities due primarily to advancements in prosthetic sockets and componentry over the last decade. Appropriate prosthetic care today routinely enables children to participate in sports, veterans to regain hope, and persons injured on the job to return to work in a relatively short period of time, as often as two to three months sometimes. Our field has done a fairly good job addressing issues of movement and mobility--running, et cetera. However, a major element of the central nervous system is really being ignored here, and that is the ability of sense of touch, feel, pain, as well as other senses. We applied for and received an SBR grant through the National Centers for Medical Rehabilitation Research at NIH to initially help amputees feel their feet and hands again. The goal of this research was to help amputees to sense pressure proportionally so they could walk and function in a more natural way and realize considerable energy savings while walking with more symmetry. As is often the case with research, the uses of the knowledge gained through this effort was much broader than we ever expected. I now strongly feel the greatest application of this technology will be in helping persons with diabetes and other diseases which cause impaired sensation to avoid further debilitating conditions including amputations. Sixteen million Americans have diabetes which according to the CDC accounts for $92 billion in direct medical costs and loss of productivity every year. We now realize that diabetes-related conditions are the leading cause of lower limb amputations, estimated to be at 68 percent of all amputations performed annually. When a patient with diabetic sores or even just a red spot on the bottom of their foot walks, he usually doesn't even limp to compensate for his condition--he can't feel the pain. Rather, the patient continues to place weight right on the ulcer. This lack of feeling results in exacerbation of the patient's condition, usually leading to costly hospital visits and many times amputation. Consider the savings that could be realized by applying this low cost technology to help at-risk populations which number in the tens of millions. We recently have completed the phase I SBRA study funded by the NIDDK. Results indicate significant improvement in gate towards more protective walking patterns in that study. Similar technology can be applied to the staggering bed sore problem. An individual ulcer can now cost up to $80,000 to treat--and it is not only one time it is treated usually, it is several times. The annual cost estimated a decade ago was $7 billion for this. You can guess what it would be now ten years later. I feel that this technology will contribute significantly to the prevention of such conditions. I strongly, strongly recommend continued full funding of the SBR research program. This program affords small independent researchers tremendous opportunity to more effectively help the people they serve in a manner that otherwise would be far, far beyond their reach. Furthermore, this investment can do much to help continue this practical applied research which can result in actual products to help people get well and potentially save billions in health care costs. It is essential to note that technology does not have to be expensive. However, by working smarter appropriate technology can actually reduce health care expenses dramatically if it is supported and made available to millions it is intended to benefit. I want to especially thank Congressman Istook for his ongoing commitment and leadership in support of rehabilitation research programs. Thank you very much. [The prepared statement of John Sabolich follows:] [Pages 241 - 248--The official Committee record contains additional material here.] Mr. Bonilla. Thank you very much, Mr. Sabolich. We appreciate your appearing before the subcommittee today. ---------- Tuesday, April 15, 1997. WITNESS SUSAN P. BAKER, JOHNS HOPKINS SCHOOL OF HYGIENE AND PUBLIC HEALTH Mr. Bonilla. We now have Professor Susan Baker of the Johns Hopkins School of Hygiene and Public Health. Ms. Baker. Mr. Bonilla and members of the subcommittee, I am Susan Baker, a professor at the Johns Hopkins School of Public Health, and the founding director of our Center for Injury Research and Policy. Yesterday, some of you heard Doctor Mark Rosenberg at CDC talk about the National Center for Injury Prevention and Control. His National Center at CDC helps to fund our own center at Johns Hopkins and nine other centers across the Nation. Injuries kill and cripple more children and young adults than any major disease. They rob us of more pre-retirement years of life than cancer and heart disease combined. The dollar cost of injury was recently estimated at more than $214 billion annually; that is ten thousand times the $20 million provided by the National Center to cover all extramural injury research, State programs, and the ten centers of excellence. Despite recent supplements earmarked for violence, there has been very little funding for unintentional or accidental injuries. Let me mention a few of the advances that have come about through CDC's extramural research program, despite its limited funding. To reduce the likelihood of hip fractures in the elderly, a hip protection device and safer floor materials have been developed. The critical elements of a successful smoke detector program have been identified in Oklahoma and used to develop a national model for fire prevention programs. A family of dummies has been developed at Ohio State for use in motor vehicle research so that the effects of crashes on people of all sizes can be better studied. Now what do I mean by limited funding? I mean only $2 million a year for extramural research grants that have to address fires, and falls, and drownings, and poisonings, and road safety, plus trauma care and rehabilitation, and biomechanics. I mean only six to eight new grants each year from CDC in all of these fields combined. I mean only $5 million a year for all of the CDC-funded State programs in injury prevention, so that many States do not have the funding and personnel that they need to implement proven strategies. And I mean no funding at all for training. The National Center has no money to meet its mandate to develop training programs in injury prevention. This means a graduate student who wants to enter the field today may find no tuition support or stipends. Our Center for Injury Research and Policy at Johns Hopkins offers courses in injury prevention, biomechanics, emergency services, aviation safety, and violence prevention. Our center develops information such as this recent monograph on injuries to children and teenagers, a project funded in part by CDC so that each State could understand its own injury problems. Research at our center includes long-term effects of head injury in bicyclists, and the effect of teenage passengers on teenage drivers and their risk of being in a fatal crash. If the funding shortage continues, we may face disasters like the current one with out of position children and air bags. At a national conference two weeks ago the question was raised, what went wrong? Why didn't we foresee that hazard? And everyone on the panel of biomechanical engineers and public health experts and auto manufacturers agreed that it might not have happened if we had had a critical mass of biomechanical expertise rather than a drying up of funds for basic injury research. Injury prevention depends on good science, which depends on adequate funding. When a single spinal cord injury can cost millions of dollars during a victim's lifetime, an investment in prevention will pay big dividends. Our world is full of hazards, generally of two kinds--the invisible ones that kill slowly, such as carcinogens and HIV, and the obvious ones that kill more quickly, such as house fires and falls. People worry most about the slow killers that they can not see. That worry is often reflected in appropriations. It is time to worry more about injuries, and not just to worry, but to do that which is in your power; namely, to provide more realistic funding for the leading killer of children and young adults. Thank you very much. [The prepared statement of Susan Baker follows:] [Pages 251 - 257--The official Committee record contains additional material here.] Mr. Bonilla. Thank you very much, Ms. Baker. ---------- Tuesday, April 15, 1997. WITNESSES TRACY BOTSET EMME ARONSON, NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS We now have Tracy Botset and Emme Aronson, representing the National Association of Anorexia Nervosa and Associated Disorders. Welcome. Ms. Botset. Thank you. Mr. Bonilla. Are you Tracy? Ms. Botset. Yes, I am. Mr. Bonilla. Very good. Ms. Botset. I am Tracy Botset. I am a recovered bulemic and member of the Virginia Board of Directors of the National Association of Anorexia Nervosa and Associated Disorders, ANAD. I also serve as a community resource person for ANAD in my local area. My co-presenter is Emme Aronson, ANAD's National Celebrity Resource Person. Emme's highly successful book ``True Beauty'' emphasizes self-acceptance, being healthy, and the joy of living. We both educate people about the causes and dangers of anorexia nervosa, bulimia, and compulsive eating and what can be done to prevent it. We are deeply grateful to Chairman Porter and the other members of the subcommittee for inviting ANAD to testify on the importance of expanding programs, services, and research which are aimed at preventing our citizens from developing these deadly illnesses. ANAD is America's oldest non-profit organization dedicated to preventing eating disorders and providing free helping services for an estimated 7,000,000 females and 1,000,000 male victims and their families in the United States. Our Nation is increasingly aware that eating disorders are desperate illnesses that strike all segments of our population, ruin lives, and often cost tens of thousands of dollars to treat a single case. Eating disorders have one of the highest mortality rates of any psychiatric illness. Some studies indicate that the incidents of eating disorders is growing rapidly. This is not surprising given our culture's obsession with thinness and a billion dollar industry dedicated to weight loss that contribute to the innovation and progression of these destructive behaviors. Anorexia Nervosa, bulimia, compulsive eating, and the tendencies that lead to these illnesses are being documented in very young populations. Doctor Timothy Buritine, from the Medical University of South Carolina, surveyed 3,100 fifth through eighth grade students. Some 40 percent felt that they were too fat or wanted to lose weight even though less than 20 percent were actually over-weight. One-third of these children said that they diet, 10 percent fasted, and almost 5 percent had vomited to lose weight. Others reported using diet pills, laxatives, and diuretics. Doctor Buritine has said, ``Any kid who has ever vomited or taken pills to lose weight has a problem.'' It is a fact that any kid who maintains these behaviors, any child, for any length of time runs the risk of stunted growth, both physically and emotionally. Large numbers of young people report their use and misuse of diet products which are sold over the counter without any restrictions. They are not aware that these potentially dangerous products can cause life-long problems or even death.'' I was personally touched with bulimia myself. I have found that talking to anybody in society that is not aware of eating disorders defines it as a ``vanity'' illness. I can tell you firsthand it is not a vanity illness; it is a mental illness. The problems that I now face are digestive problems. An early problem in my recovery was Bells Palsy from forcing myself to vomit due to damaging nerves in one side of my face. I came back 98 percent, and very few come back that far, through steroid use and doctor office visits. This was very expensive to go through all the doctor visits that I have been through and my recovery. I just personally feel that it is very important that this is looked into and is funded sufficiently. Ms. Aronson. An ANAD ten year study documents that 43 percent of victims report the onset of their illness by age 15, 86 percent by the age 20, but only 50 percent report being cured. We now have evidence that large numbers of sufferers are in their 20s, 30s, 40s, or older. A recent survey by the Centers for Disease Controlrevealed that in 11,600 eighth through tenth graders 34 percent were actively using diet pills, 23 percent actively vomiting to reduce weight; 61 percent of the girls and 28 percent of the boys were actively dieting to lose weight. A little shocking. For these reasons, we ask Congress to recommend that $10 million be allocated to prevent eating disorders through education and public awareness programs. We ask another $10 million to be allocated for research and that part of the research funding be allocated to study and promote primary prevention. Both in numbers of victims and cost of treatment, Anorexia Nervosa, bulimia, and compulsive eating are the major illnesses of our country which do not now, and never have received adequate understanding or support. Prevention programs available at an early age could be instrumental in reducing the incidents of eating disorders. We need to teach correct notions about nutrient, body development, and growth in an atmosphere which also encourages emotional health. We need programs designed to support the best of life decisions. Our young people need to learn self-respect, appropriate responses to both successes and failures, and ways of handling change which is often extremely difficult with a person with an eating disorder. Mr. Bonilla. Excuse me, Ms. Aronson. If you would just summarize. I am sorry to have to let you know that your time has expired. In consideration of other witnesses here, we just need to move on. Ms. Aronson. Absolutely. No problem. Mr. Bonilla. Whatever you submit for the record, I can assure you it will be reviewed in detail. Ms. Aronson. Great. I just want to be able to let you know that there is a serious, serious problem out there with a lot of children. Young kids starting at the age of five, six, going on up, saying that there is a lot of problems with am I fat. Eating disorders are on such an enormous rise right now that we do not have appropriate funding and we really, really do need to get funding in the very primary start in kindergartens, food groups, basic things. Teachers are not aware of things, doctors are not as aware of eating disorders as much as we would like. Cost is absolutely out of control. Thousands and thousands of dollars are spent for individuals trying to get health care. We really appreciate you listening to us. On behalf of ANAD and the group that we work with, we appreciate the time. Thank you very much. Ms. Botset. Thank you. Mr. Bonilla. Thank you very much for appearing today. Congressman Dickey is going to be chairing the remainder of the hearing. [Clerk's Note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness] [The prepared statements of Tracy Botset and Emme Aronson follows:] [Pages 261 - 267--The official Committee record contains additional material here.] Tuesday, April 15, 1997. WITNESS REED V. TUCKSON, M.D., ASSOCIATION OF MINORITY HEALTH PROFESSIONS SCHOOLS Mr. Dickey [assuming chair]. Our next witness is Doctor Reed Tuckson, President of Charles R. Drew University, representing the Association of Minority Health Professions Schools. Dr. Tuckson. Mr. Chairman and members of the committee, good afternoon. My name is Doctor Reed Tuckson. I am president of the Charles Drew University of Medicine and Science. I am here today in my role as president of the Association of Minority Health Professions Schools. Our association comprises the 12 Historically Black health profession schools that have collectively produced 60 percent of our Nation's African-American pharmacists, 50 percent of our Nation's African-American physicians and dentists, and 75 percent of our Nation's African-American veterinarians. Given the mandate of our missions to serve the health needs of America's most challenged communities, we are proud of our schools' record of diversity in reaching out to other minorities and the legacy of committed service by our graduates who so often practice in inner-city and rural communities and whose patients are so often those without either public or without any insurance at all. Because of the nature of our work, the financial struggle to survive and to pursue excellence is a constant one for us. We do not have wealthy donors who are served by our hospitals, nor are we able to generate the impressive clinical revenue of other medical centers that are able to attract wealthy patients. However, despite this, we are proud of our hard- earned and maturing expertise in struggling with and developing new knowledge about our Nation's most persistent health challenges. Because we experience first-hand the realities of the disproportionate health status of poor and minority Americans, we have learned much about the requirements for research and prevention and have developed important insights into the provision of cost-effective clinical management of them in a way that produces quality outcomes. In light of our missions and purposes, your committee has jurisdiction over four programs that are of particular interest to us. First, the Health Professions Disadvantaged Minority Training programs. There have been several reports that predict a general over-supply of physicians and other health care providers in our country. Unfortunately, this is not the case among all health care providers. Only 2 to 3 percent of African-Americans are privileged to be health providers. This Nation needs many more minority physicians, dentists, pharmacists, and veterinaries, and allied health professionals if we are to successfully address the needs of all Americans and particularly those living in under-served communities. The Health Professions programs supported by your committee are the only Federal initiatives that are designed to deal with acknowledged shortages among diverse populations and geographic areas. The Minority Center of Excellence Initiative, the Health Career Opportunity program, and other health professional programs recognize and support the institutions that have a track record and existing mission and commitment to addressing those shortages. The support provided for the Centers of Excellence program represents, very frankly, the difference between keeping the doors open or closed at several historically minority health professions schools. Our Association is disappointed that the President's budget recommended severe cuts to this program. We urge the subcommittee to restore fiscal year 1998 funding to the current level of $292 million. Second, the National Institutes of Health. We are committed to narrowing the health status gap among minorities when compared to the general population. Our institutions can achieve this goal by improving our research capabilities through continued development of our research labs, faculty improvement, and other learning resources. Three NIH programs specifically address developing the research infrastructure of our institutions. They are, first, the Research Centers at Minority Institutions program, for which we think funding should grow at the same rate asthe NIH does overall. The Extramural Facility Construction program is desperately needed to build adequate research facilities. The subcommittee is urged to provide $30 million for fiscal year 1998 for this program. We remain concerned about the administration of this program and hope that the designated 25 percent funding to go to institutions of emerging excellence will be made available as you have indicated in the past. The Minority Health Initiative in the Office of Research on Minority Health are also critical. We recommend support of those programs at a combined level of $80 million for them in fiscal year 1998. Three, the Centers for Disease Control. Mr. Chairman, minority populations of all ethnic backgrounds are at significantly increased risk of infectious disease, low birth weight, hepatitis B, and other such chronic disorders. Because of our relationship in our communities to these sorts of epidemiological challenges, we realize the importance of the partnership that we have with CDC. We recommend overall funding for CDC for fiscal year 1998 at the $2.75 billion level. Finally fourth, strengthening historically black graduate institutions and higher education. The strengthening of historically black graduate institutions program, Title III, Part B, is of extreme importance to our institutions. We would urge you with the strongest capacity that we have to strengthen these programs and the support for them for our institutions. In closing, Mr. Chairman, I have gone exactly five minutes and I have two pieces of testimony that we want to leave for the record. Mr. Chairman, we thank you for your patience and we thank this committee for its support of our programs. [The prepared statement of Reed Tuckson, M.D., follows:] [Pages 270 - 276--The official Committee record contains additional material here.] Mr. Dickey. Thank you, Doctor Tuckson. As loud and clear as you were, I was wondering if you thought I was hard of hearing? Dr. Tuckson. Mr. Dickey, I will tell you, my only thing is that we are so enthusiastic about the work we do we just can't contain ourselves. [Laughter.] Mr. Dickey. I finally concluded that. My second point, do not leave yet, UAPB, University of Arkansas at Pine Bluff, I heard nothing in there about UAPB. Next time, you will put something in there, won't you? Dr. Tuckson. I got that message loud and clear. Mr. Dickey. That is my home town. Dr. Tuckson. Yes, sir. Thank you. Mr. Dickey. Thank you, Doctor Tuckson. ---------- Tuesday, April 15, 1997. WITNESS PHYLLIS WEBER, ASSOCIATION OF ORGAN PROCUREMENT ORGANIZATIONS Mr. Dickey. Next is Phyllis Weber. How are you, young lady? Ms. Weber. I am fine, sir. Mr. Dickey. You are the executive director of the California Donor Network in San Francisco, here representing the Association of Organ Procurement Organizations. Ms. Weber. That is correct, sir. Mr. Dickey. You have five minutes. Ms. Weber. I very much appreciate the opportunity to share with you and members of the subcommittee our views on the need of funding of activities which will increase organ and tissue donation. I congratulate the members of the subcommittee for the timing of this hearing. National Organ and Tissue Donation Awareness Week is April 20-26. Organ procurement organizations, OPOs, throughout the Nation will be conducting events to create greater awareness of organ and tissue donation. At our program in San Francisco, over 750 participants will attend an annual gathering honoring organ donor families and respecting organ donors. National Organ and Tissue Awareness Week, it is particularly timely that we discuss the important need for funding to increase donation. First, let me tell you a little bit about the work of the California Transplant Donor Network. Our service area covers 40 counties in Northern and Central California, serving over 160 hospitals. Last year, we managed 209 donors and recovered 698 organs which were made available to patients for transplantation. The work we do every day saves lives. Our biggest challenge is to inform and educate the public about the success of transplantation and the importance of organ donation. In our area last year, one-half of our families approached about organ donation declined this option. An unfortunate statistic that is relatively consistent throughout the country. With a small amount of funding, organ procurement organizations can do a better job to change this statistic, and a better job needs to be done. Currently, over 51,000 patients are waiting for hearts, livers, lungs, kidneys, and other solid organs. Each day ten people die while waiting for a transplant. Thus, it is incumbent upon us, the Federal Government and the organ procurement community, to join forces and address the serious shortage of organs. The President's budget requests $3.891 million for fiscal year 1998 to support the activities authorized by the National Organ Transplantation Act, NOTA. These activities include the organ procurement and transplantation network, usually referred to as the OPTN, the scientific registry of transplant recipients, and donor awareness projects. ThePresident's request represents an increase in funding of $1.6 million. We would like to see $15 million available for NOTA authorized activities, an amount which is comparable to support provided by Congress for the National Marrow Donor Program. Additional funding for the Division of Transplantation would enhance our public and professional education efforts about organ and tissue donation. Mr. Dickey. Phyllis, excuse me. Am I hearing you right? The $3 million is what is proposed and you want $15 million? Ms. Weber. That is correct. We strongly support these efforts. Mr. Dickey. Good luck. Ms. Weber. Well, we are making an attempt here. Let me finish. Let me be clear, we strongly support the funding of the OPTN and registry. The OPTN matches organs to patients in a fair and equitable manner. The scientific registry is a jewel in the crown of medicine. It is unique in that it documents the status of every transplant patient. While we strongly urge that more funding be made available for donor awareness projects, we do not propose the funding come from these two important activities. Now a few words about the organization of which I have the honor of being president this year. The Association of Organ Procurement Organizations represents 49 of the Nation's 63 OPOs. OPO represents and serves our members through advocacy support and development of activities that will maximize the availability of organs and tissues for transplantation. We are currently conducting a study regarding performance standards. We strongly believe that organ procurement organizations should be judged by how well they convert medically suitable potential donors into actual donors. We are collecting data from a variety of hospitals of different sizes. Analysis of the data will help us in developing a national standard for organ procurement performance. The study is being supported in part by the Division of Transplantation in HRSA and is an example of the cooperation between the Federal and non-profit sectors. We recognize that this subcommittee concerns itself with appropriations, but we also recognize that you are interested in program performance. Organ procurement organizations are being disadvantaged by the current HCFA performance standards. I would not take up your time with a description of the complex standards that are now in place. Suffice it to say, the standards are flawed and work to the detriment of organ procurement organizations. Therefore, we request that you direct HCFA to review their standards and to consult with the leadership of the industry in developing a more appropriate set of standards. Mr. Chairman, it has been a pleasure to share our views with you today. I will be pleased to answer any questions. [The prepared statement of Phyllis Weber follows:] [Pages 280 - 286--The official Committee record contains additional material here.] Mr. Dickey. I have already asked my question. Thank you. You did a good job. Ms. Weber. Thank you. ---------- Tuesday, April 15, 1997. WITNESS KAREN HENDRICKS, COALITION FOR HEALTH FUNDING Mr. Dickey. Next, we have Karen Hendricks, president of the Coalition for Health Funding. Hello. Ms. Hendricks. Good afternoon, Mr. Dickey. The Coalition for Health Funding is very pleased to provide the subcommittee with a statement recommending fiscal year 1998 funding levels for the agencies and programs of the Public Health Service. The Coalition is a 27 year old alliance of 40 national health associations with a combined membership of 40,000,000 health care professionals, researchers, lay persons, as well as consumers. The Coalition sincerely appreciates the strong and continued support that you and the subcommittee have given to health discretionary programs in the past years. A strong, effective public health endeavor holds great promise for improving the health of Americans and reducing the cost associated with premature death and disability. As the 20th century comes to a close, it is important to recognize the extraordinary contribution that public health has made. Since the turn of this century, life expectancy for Americans has increased from 45 to 75 years, fully 25 years are due to public health interventions. These include the adoption of better nutrition, housing, sanitation, occupational safety, and eradication of devastating infectious diseases such as polio. Today, we face many new challenges to the Nation's health and well-being, challenges that if not met will reverse in the next millennium many of the gains we have made in this century. We have recently seen the reemergence of diseases we thought we had defeated because we did not maintain adequate support for immunization, screening, and treatment programs despite the warning of public health professionals. The reemergence in the last decade of TB and measles are prime examples. In large part, because of the actions of this subcommittee, we are now once again making good progress in addressing these diseases. TB has abated in most communities but not all over the country as evidenced by just a few miles from this building. Current levels of immunization prevent millions of cases of measles, mumps, and other diseases that otherwise would cost approximately $1 billion a year in medical care. While the President deserves great credit for the leadership he has shown in increasing childhood immunization rates, his fiscal year 1998 budget request effectively cuts the Childhood Immunization Program at CDC by $25 million if Congress does not enact legislation to reduce the vaccine excise tax. This seems to be a pretty risky treatment of a program of such fundamental importance to the Nation. Other public health challenges face us as we end this 20th century, chronic diseases and conditions, many of which are due to unhealthy lifestyle choices. Our investment in NIH has identified a limited number of behaviors, many adopted in early life, which contribute to hundreds of billions of dollars in direct and indirect cost due to heart disease, cancer, diabetes, and intentional and non-intentional injuries. Investing in nationwide disease prevention and health promotion activities to reduce this largely preventable national burden will more than pay its way. We are facing now and in the next century the challenge we thought we largely conquered in the first half of the century-- new and emerging infectious diseases. Some public health professionals call this the coming plague and warn that we must be ready. We have already glimpsed the nature of the challenge in our battle against HIV and AIDS. Other examples are the recent, and for some deadly, food borne outbreaks of E. coli or hepatitis. Addressing these challenges will require adequate support of every major activity in the Public Health Service. We must invest in biomedical and behavioral research to develop the prevention and treatment tools. We must invest in core public health functions such as surveillance and prevention, some of which of necessity may reach beyond our national boundaries. We must invest in a health care delivery system that will effectively reach all individuals within our cities, our counties, and our State lines. We mustinvest in an adequately trained primary care and public health workforce that will staff the health care delivery system whether it is an inner-city public health clinic or a rural community health center. To address all these challenges takes a long-standing, adequately funded, committed effort at the Federal level. Disease and disabling conditions are national and increasingly international problems with a major implication for our continued economic leadership in the world. The Coalition for Federal Funding appreciates the difficult budget constraints facing this subcommittee. Mr. Dickey. Ms. Hendricks, you will need to begin wrapping it up. Ms. Hendricks. I am wrapping it up right now. Mr. Dickey. Thank you. I did not hear that tenseness in your voice. Ms. Hendricks. It was a little segue to the wrap-up. For fiscal year 1998, the Coalition is recommending a 12 percent increase above fiscal year 1997 levels to ensure that we address the critical needs of biomedical, behavioral, and health services research, as well as food and drug regulation, and other health services for vulnerable populations. Thank you. [The prepared statement of Karen Hendricks follows:] [Pages 289 - 297--The official Committee record contains additional material here.] Mr. Dickey. One question quickly. You mentioned the coming plague. What is that? Ms. Hendricks. Emerging infectious diseases. Mr. Dickey. All of them together? Ms. Hendricks. A whole series that we just do not know a lot about--E. coli, Ebola, some of the viruses. Mr. Dickey. Okay. Thank you. You did a good job. Ms. Hendricks. Thank you. ---------- Tuesday, April 15, 1997. WITNESS ROBERT BALSTER, COLLEGE ON PROBLEMS OF DRUG DEPENDENCE Mr. Dickey. Doctor Robert Balster, Director of the Center for Drug and Alcohol Studies at the Virginia Commonwealth University, representing the College on Problems of Drug Dependence. How are you, sir? Mr. Balster. Just fine. Mr. Dickey. Would you like five minutes or less? [Laughter.] Mr. Balster. I would love five. Mr. Dickey. You can have five. Mr. Balster. It is good to be here again and testify before this subcommittee. I am Doctor Robert Balster, and I am the director of the Center for Drug and Alcohol Studies at Virginia Commonwealth University. I am the public policy officer and past president for the College on Problems of Drug Dependence. I am pleased to be here today to talk about budgets for NIH, specifically NIDA, and the Substance Abuse and Mental Health Services Administration. CPDD, which I represent, is the major national scientific society of drug abuse researchers. First, CPDD members want me to thank you and the members of the committee for the tremendous support that you have provided to NIH over the last two years. We know the subcommittee was faced with many tough decisions, and we sincerely appreciate the funding increase for NIH for 1996 and for this year as well. I assure that our membership is very well aware of this committee's leadership in support of the National Institutes of Health. Every member of this distinguished subcommittee, indeed, every member of Congress is well aware of the recently reported increase in drug use among our Nation's children. Of particular concern is the dramatic increase in marijuana use among our very young including pre-teens. The message we want to bring to you today is that drug abuse is a preventable behavior and drug addiction is a treatable disease. Drug addiction is certainly a social problem and a legal problem, but it is also a health problem. We believe that part of the explanation for the rise in drug use lies in a weakening of our Nation's resolve to implement the best prevention and the best treatment programs that research shows can work. The scientific opportunities that exist, if adequately supported, can help find solutions to our problems of drug abuse and addiction. We are extremely appreciative of the Administration's proposed $33 million increase for NIDA which we believe represents the President's awareness and concern about this complex public health problem. We are optimistic that the NIDA budget request will support the research that is needed to determine the most effective prevention and treatment. Indeed, most police and interdiction community experts agree that we must stem the demand for drugs if we are really to be successful in the long run. What we really need in order to produce significant and long-lasting changes in illegal drug use is a better understanding of the fundamental causes of drug abuse and addiction. We have learned a lot and our latest treatment advances reflect some of that knowledge. Some of what leads people to take drugs is inherited from their parents. The availability of drugs is also an important determinant of initial use but much less important to addicts who would do whatever it takes to get them. Something happens to the brains of people who take drugs, and we are learning a lot about this using the latest advances in neuroscience. Nonetheless, I think it is important to recognize that drug abuse is basically in its infancy. NIDA was established only 20 years ago or so and it funds virtually all drug abuse research worldwide, certainly almost all of it in the United States and even 85 percent worldwide. There is practically no pharmaceutical industry work going on in the area of drug abuse research. This problem of an inadequate support base for drug abuse research has been recognized by ONDCP Director, General Barry McCaffrey. The proposed $33 million increase for NIDA is part of the President's national drug control strategy, which we support. I do not want to sound alarmist, perhaps I do, but scientists know that there are new even more powerful drugs than heroin and cocaine that could become a problem for us in the near future. The recent outbreak of abuse of methamphetamine is an example of this. We must be equipped scientifically to meet not only the challenges of the day but those of tomorrow. Researchers now have the ability to show in detail what drugs are actually doing to the brain when people use them; that is, we can actually visualize as it happens where drugs are binding in the brain. We have discovered the specific brain circuits that are involved in drug abuse and we are beginning to unveil the changes in activity patterns in these circuits during the processes of addition withdrawal. Researchers have identified genes for the receptor sites for practically every illegal substance. We are now working on using this knowledge to develop new medications. In our written testimony, we provided for you a number of areas of future research which we think are important to consider. To save time, we would not go into those now. I would like to turn now very briefly to the appropriations for SAMHSA. The SAMHSA supports the research and demonstration training programs that we think are really an important part of the national overall strategy. I need not tell you that there is an important gap between what is known about prevention and treatment effectiveness andwhat is actually being done in many communities across the country. The new treatment and prevention initiatives that emerge from NIDA supported research require community- based programs to evaluate their effectiveness. This is done through the demonstration grants programs of CSAP and CSAT. They are very important. They were cut dramatically in 1996, but to the bare bones, and this has really been a very significant problem in curtailing their effectiveness. To conclude with our specific recommendations, we request that as an absolute minimum Congress provide the President's requested $33 million increase for NIDA as part of the national drug control strategy. Indeed, as it did last year, we hope Congress can do a little better than the President's budget request. If it does, we would like to see NIDA get its proportionate increase that is consistent with that strategy. For SAMHSA, we do not have a specific budget recommendation but really implore you to do whatever you can to support these RDA programs. Thank you very much for your consideration of our request. [The prepared statement of Robert Balster follows:] [Pages 301 - 308--The official Committee record contains additional material here.] Mr. Dickey. Thank you, sir. We appreciate your good testimony. ---------- Tuesday, April 15, 1997. WITNESSES FRANCIS HARPER, THE DANA ALLIANCE FOR BRAIN INITIATIVES Mr. Dickey. Ms. Francis Harper, representing the Dana Alliance for Brain Initiatives. Welcome. Ms. Harper. Good afternoon. I am here today to testify on behalf of the Dana Alliance for Brain Initiatives, a non-profit organization of 155 leading neuroscientists, including five Nobel Laureates, committed to advancing awareness of the personal and public benefits of brain research. In the three years since its inception, the Alliance has worked to bridge the gap between scientific advances and public understanding of their implications for themselves and for society. Neuroscience has made outstanding progress in recent years, but its highest goal remains--healing the devastating brain diseases that steal the joy from so many lives. Already great strides have been made in developing effective treatments where there were none before and in refining the ones we have to improve their selectivity and reduce side effects. Dozens of new medications and new therapeutic procedures for treating an array of neurologic and psychiatric disorders have become available in the last few years alone, and at least 100 more are in human testing stages. For almost every disease of the brain there are compounds that are either available now or are in phase III clinical trials. Just in the past year, for example, new treatments were approved for amyotrophic lateral sclerosis, Alzheimer's disease, drug addiction, stroke, multiple sclerosis, schizophrenia, and depression. Several important scientific developments are driving this tremendous progress. Primary among them is the triumph of basic research on the brain, understanding how the normal brain performs its miraculous retinue of functions. Largely through the application of molecular biology techniques, neuroscientists have made great headway in unravelling the intricate processes by which the brain directs the activity of every organ in the body. This progress and the steady stream of advances that have been made in the neuroscience over the past decade are the direct result of investment by the Federal Government, often in areas of research that would not have been undertaken in the private sector. Private sector investment in research takes place in those instances where one corporation believes it can out-distance another by way of a new treatment or a new medication brought to the marketplace. Basic research, which fuels these developments, benefits everyone and therefore offers no competitive margin. Time and again, it has been Federal investment in basic research which has led to the development by the private sector of new therapies and treatments. As the Congress considers the seemingly insurmountable challenges of controlling costs, improving the quality of life for our citizens, and stimulating growth in our economy, we believe it is imperative and convincing that it considers the compelling benefits of medical research and its ability to pay back the costs of investment, because that investment will be paid back. There will be eventual reduction of costs as people live healthier, productive lives and the utilization demand for Medicare and Medicaid services diminish as a result in decreased chronic disability. While some may argue that this Nation cannot afford to devote more resources to medical research, the fact is society cannot afford to ignore the threat that disease and disability pose to people today and to future generations. Any short-term savings derived in the name of deficit reduction will pale in comparison to the long-term cost implications. Diseases of the brain and related disorders cost society more than $600 billion annually. As our population ages, health care costs will rise even more steeply. No one disputes that better medical treatment for our most devastating diseases and disorders will improve the quality of life for our citizens, not only for the afflicted but for the thousands of family members involved in their care. Medical research provides for greater economic growth, more exports, more high technology jobs. Whole industries have been built upon scientific advances in medical research, particularly in technologies such as lasers, magnetic resonance imaging, and PET scans. Time and again, innovations stemming from medical research have yielded long-term savings and improvement in the health and productivity of our Nation. With a strong sustained commitment, even more lives and more dollars can be saved. It is well known that this committee has shown enormous and continued support for medical research. And you are once again faced with tough budgetary decisions that will limit your ability to fund its growth. But is medical research a matter to be decided by a budgetary policy in this country? Or rather, is it to be one determined by a sound science policy that recognizes its social and economic benefits? The strength of any great Nation can be no greater than the health of its citizens. Government involvement in the care of its citizens is inevitable. Given this, we need to ask which business this Government wishes to be in, the disease business where the costs are chronic, escalating, and eventually crippling, or does the Government want to be in the research business where investment will lead to the prevention of disease and better therapies, and where the prospects for long- term reduction in cost and the ability to sustain a healthy, productive citizenry are enormous? Thank you, Mr. Chairman. [The prepared statement of Francis Harper follows:] [Pages 311 - 316--The official Committee record contains additional material here.] Mr. Dickey. Good question. Thank you very much. ---------- Tuesday, April 15, 1997. WITNESSES SUSHMA D. TAYLOR, CENTER POINT JOY PARKER-JIMENEZ Mr. Dickey. Doctor Sushma D. Taylor. Is that close? Ms. Taylor. That is close enough, sir. Mr. Dickey. And Joy Parker-Jimenez. Ms. Parker-Jimenez. That is close enough too. Mr. Dickey. All right, pronounce it for me. Ms. Taylor. Sushma Taylor. Mr. Dickey. Sushma. All right. How do you pronounce your last name? Ms. Parker-Jimenez. Jimenez. Ms. Taylor. Good afternoon, Mr. Chairman. Thank you for this opportunity. Mr. Dickey. You have got four and a half minutes now. [Laughter.] Ms. Taylor. How about I trade you time for money? Less time, more money? Mr. Dickey. All right, that is fine. Ms. Taylor. We got a deal, sir. [Laughter.] Ms. Taylor. In that case, what I would like to do is go to the middle and have Ms. Parker-Jimenez speak to you for two minutes and then I will wrap up. Ms. Parker-Jimenez. Good afternoon, Mr. Dickey. I would like to share my experience as a chronic substance abuser who was in need of treatment, received it, and recovered. I was born in 1956, my parents divorced soon afterwards. When I was 10, my stepfather began to drink abusively, and at 14 I began to use drugs. By 18, I was addicted to heroin. From 1974 to 1991, I had a $500-a-day heroin habit, which I supported through criminal activities such as drug dealing and bank robbery. This equates to $800,000 in nominal terms. I was arrested 12 times, spent 12 years in Federal prison, for an estimated cost of $300,000. By 1991, I had cost the taxpayers over $1,100,000 in criminal justice and other social costs. In that year, I was sent to Center Point, Doctor Taylor's program, by the U.S. Probation Department in the Northern District of California. I was in desperate need of comprehensive treatment, and I received six months of treatment at a cost of $12,000. Since completing treatment in 1991, I have obtained a masters degree, have maintained full-time employment, voted in the last election, and paid over $20,000 in State and Federal taxes. I ask you to consider this: had I been given the opportunity for treatment much earlier in life, I may not have been the $1,100,000 financial burden I was. The fact is, there are not enough Center Points. You wonder if treatment works, is it cost-effective. Yes, it is. I know, because every day I wake up I am not sick from a heroin addiction, I am not robbing somebody, no cops are trying to knock down my door, and I am not sitting in the penitentiary, I am getting ready to go to work just like you are. For those of you willing to give people like me the opportunity to go from tax burden to tax payer, I thank you. Mr. Dickey. I am glad you do not equate coming before a subcommittee of Congress as that bad. [Laughter.] Mr. Dickey. You are one of the few to say it is better than where you were. Yes, ma'am. Ms. Taylor. I think Ms. Parker-Jimenez has summed it up. We know it is a tight fiscal year, but we would hope that you would give the SAMHSA budget your due consideration. We need the dollars in the public non-profit treatment sector. Treatment does pay. Large-scale studies have shown an investment return of $5 to $7 for every $1 invested in treatment. I just brought you living proof. I think that says it all. Thank you, sir. [The prepared statement of Sushma Taylor follows:] [Pages 319 - 333--The official Committee record contains additional material here.] Mr. Dickey. Let me ask you a question. How much is the appropriation? Ms. Taylor. We are requesting a $10 million increase in the block grant. The Administration budget is $67 million. Increase in the demonstration, I would probably suggest a $20 million increase would be fine. Mr. Dickey. And how much would that total? Ms. Taylor. The current appropriation is $1.37 million in fiscal year 1997. Mr. Dickey. Add $20 million to that? Ms. Taylor. Yes, sir. Mr. Dickey. Okay. Thank you. Ms. Taylor. Thank you, sir. Mr. Dickey. Congratulations, ma'am. Ms. Parker-Jimenez. Thank you. Mr. Dickey. One day at a time. Ms. Parker-Jimenez. That is it. Mr. Dickey. All right. ---------- Tuesday, April 15, 1997. WITNESSES MARK S. LEVITAN DONNA RICE, FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES (F.I.R.S.T.) Mr. Dickey. Next, Mark Levitan, Executive Director of the Foundation of Ichthyosis and Related Skin Types. He will be accompanied by Donna Rice, Vice President of the Board of Trustees. Welcome. And little Haley Rice. Ms. Rice. That is right. Mr. Dickey. Hi, Haley. Ms. Rice. Haley would like to give you these pictures. Mr. Dickey. I love that hat. I had a little girl 21 years ago. She is now a grown lady. Thank you, Haley. Proceed, Mark. Mr. Levitan. Mr. Chairman and members of the committee, my name is Mark S. Levitan. I am the executive director of the Foundation for Ichthyosis and Related Skin Types, or as we call it F.I.R.S.T., a not-for-profit organization. Testifying with me today is Donna Rice, Vice President of our Board. On behalf of our members, those with Ichthyosis and their families, I wish to thank the subcommittee for the opportunity to testify today. F.I.R.S.T. receives no grants or contracts from the Federal Government. We do receive approximately $2,500 per year from the Federal employees through CFC. Ichthyosis is a family of genetic skin diseases characterized by dry, thickened, scaling skin. Currently, there is no cure and there are no truly effective treatments. F.I.R.S.T. is dedicated to helping individuals with Ichthyosis and their families. Our most valuable resource is our network, and I am going to let Donna Rice talk to you about that. Ms. Rice. You have already met my daughter, Haley, who is five years old and is one of the estimated 19 children born in the U.S. each year with a specific type of Ichthyosis called lamellar. Haley was born six weeks early, which is relatively common for babies with Ichthyosis, so when the doctor said there is something wrong with your baby's skin, we were relieved. During the next two months that Haley spent in the hospital, we were to find out just how many things could be wrong with your skin. Severe dehydration at eight days of age due to excessive fluid loss through the skin reduced her birth weight to three and a half pounds and caused kidney damage that is still with her today. Within the next 24 hours she was diagnosed with septicemia, which is a generalized blood infection, and meningitis, both because her first barrier to infection, her skin, didn't function properly. Heroic medical intervention allowed Haley to come home to us and we really began to learn what it really meant to have Ichthyosis. Our goals at home were to keep Haley healthy, comfortable, and free from infection, a process that even today takes about four hours. By the time she turned two, she had already been hospitalized several times with serious infections, weighed only 16 pounds, and was developmentally delayed. Haley finally did learn to walk but her skin is still too tight and dry to allow her to run with her brothers, to hold a pencil for drawing, to close her lips for speech, or even to close her eyes while she is sleeping. As you can probably tell from her appearance here today, her struggles with malnutrition and growth are still unresolved. The physical aspects of Ichthyosis are mostly obvious, while the unseen blows to Haley's self- esteem as she is stared at due to her appearance are just as real and ultimately may be more damaging. We still count ourselves and Haley among the lucky and we are very proud of her, proud that she survived when so many of our babies succumb to infection, dehydration, and SIDS. We know that we are lucky. We are lucky that we have access to health care, access to medical insurance and that we can also afford the out-of-pocket expenses to keep her healthy which last year alone exceeded $10,000, and to live in a school system that looks forward to having Haley there despite the cost of educating her. In the past five years, as a coordinator of our support network for F.I.R.S.T., I have spoken with parents who are not so lucky. I remember the young parents of a baby girl born with Harlequin Syndrome, the most severe form of Ichthyosis. This mother's disappointment that the frilly dresses she had imagined for her daughter were too rough for her skin was all too quickly replaced by the grief of her baby's death due to a massive infection. I remember the single mom of a two year old with congenital ichthyosa form of rithroderma vainly searching for a day care provider not bothered by her son's constant shedding of skin. Just this past week, I spoke with a mom in Wisconsin vainly trying to find the money to buy a cool vent so her son can play outside during recess. All because they heard the words, ``There's something wrong with your baby's skin.'' Lastly, I would like to leave you with part of a letter sent from the Hoffmans in Kansas on their son Teddy's first birthday in January. ``Teddy is setting his own pace and the rest of us are learning to follow his brave lead. I do not know what the future will hold, but he has already taught us that life is not perfect but it is something to cherish. He is our love, our pride, and our joy.'' Two weeks later Teddy died. Mr. Levitan. Mr. Chairman, in 1992 this committee supported our request for a national registry and that exists today. For that, we thank you. Recent research efforts have yielded dramatic results such as the identification of the genetic mutation in lamellar Ichthyosis, the type that affects Haley Rice. Other researchers have used this information to repair the lamellar Ichthyosis defect in the laboratory. We are asking the distinguished members of this subcommittee for your continued strong support for medical research with particular regard to three areas. Mr. Dickey. Mr. Levitan, I am sorry but your time is up. Mr. Levitan. May I just finish? Mr. Dickey. Can you just submit that for the record? Mr. Levitan. I certainly will, sir. Thank you very much. Mr. Dickey. Thank you. Did you say 19 cases a year? Ms. Rice. There are 20 different forms of Ichthyosis. The most common form occurs in 1 in 250 individuals. The type that Haley has as well as some of the more severe types occur in about one to five per million live births. Mr. Dickey. Okay. Thank you. Bye, Haley. [The prepared statements of Mark Levitan and Donna Rice follows:] [Pages 337 - --The official Committee record contains additional material here.] Tuesday, April 15, 1997. WITNESS JACK E. DIXON, OF THE JOINT STEERING COMMITTEE FOR PUBLIC POLICY Mr. Dickey. Next, Jack Dixon, Chair and Minor J. Coon Professor of biological chemistry, representing the Joint Steering Committee for Public Policy. Mr. Dixon. Good afternoon, Mr. Dickey. My name is Jack Dixon. I am Professor and Chair of the Department of Biological Chemistry at the University of Michigan Medical School, and the President of the American Society for Biochemistry and Molecular Biology. I am here today representing the Joint Steering Committee on Public Policy. This is a coalition of five life science societies representing more than 20,000 biomedical researchers. My purpose today is to discuss with you and your colleagues the need for an adequate appropriation for the National Institutes of Health, the world's premier supporter of biomedical research. First, I want to express my gratitude for your support for the NIH over the years. Your support has led to profound advances in the treatment of human diseases which have directly benefitted every American family, and you have heard about some of those today. I know you share my belief that biomedical research is one of the best investments that the Federal Government can make with its public funds. Therefore, I am always mindful of the awesome responsibility you have placed upon those of us who are practitioners of biomedical research, and I appreciate very much your support and your trust. The Joint Steering Committee as well as virtually the rest of the life science community is supporting an appropriation for NIH in fiscal year 1998 of $13.894 billion, an increase of 9 percent over last year's budget. This is an ambitious recommendation and is very justifiable on a variety of grounds. Examples abound about how biomedical research has helped the people of this country, and I will just cite a couple for you. Several decades ago, NIH funded research to investigate a family of enzymes known as acid proteases. We now know that the AIDS genome also encodes an acid protease which is required for the replication of that virus. The basic knowledge obtained on these proteases years before the AIDS epidemic suggested how these proteases function and this knowledge in turn provided a blueprint which allowed NIH-supported scientists, pharmaceutical firms, and the biotechnology industry to respond rapidly to design selective inhibitors which will block the function of the AIDS protease. These inhibitors along with other reagents are now responsible for the promising new data which indicate that the levels of the AIDS virus in some patients are now at undetectable levels. We often talk about treating diseases but seldom can I tell you about curing diseases. So, I am particularly gratified to tell you about a potential cure that seems to be within reach for people with Sickle Cell disease. NIH-supported scientists are experimenting with bone marrow transplants as possible cures for children with Sickle Cell disease, a painful and often fatal condition which affects approximately 1 in 400 Afro-American children. In recent experiments, 73 percent of the children with Sickle Cell disease was successfully cured by this treatment. I, myself, have had the privilege to receive NIH support since the 1970s. I will just tell you briefly about some of my own work. In the early 1980s, NIH-supported scientists demonstrated that receptors such as the insulin receptor were turned on by phosphorylation and turned off by dephosphorylation. We began to study the enzymes responsible for turning off these receptors. Our basic research findings in our laboratory and in other laboratories provided the knowledge for pharmaceutical firms to use to design drugs to specifically block the turning off of the insulin receptor and thus to treat diabetes. I have been very fortunate to have the opportunity to study this family of dephosphorylating enzymes which has the potential for altering the course of human disease. It is truly undeniable that this work costs money. Sadly, some may even think that it costs too much money and that we can not afford to do it. I believe that, indeed, we can not afford not to do it. In fact, biomedical research is one of the most cost-effective ways to spend Federal dollars, saving in the long run vastly more money than is spent initially. Even the most conservative estimates on the pay-off for biomedical research show a 28 percent return in our investment. Looking at it in this light, a 9 percent increase in the budget doesn't seem so aggressive after all. Mr. Chairman, this concludes my comments. I want to thank you again for the opportunity to appear before you. I will be delighted to answer any questions you have. [The prepared statement of Jack Dixon follows:] [Pages 347 - 353--The official Committee record contains additional material here.] Mr. Dickey. I have no questions. Thank you very much. You did a good job. I want to tell the audience by way of preview that Doctor Barry Lindley, from the University of Arkansas--where are you, Barry?--is coming up so you all stay around. You will want to hear anything that is coming from the University of Arkansas. [Laughter.] ---------- Tuesday, April 15, 1997. WITNESSES DOUGLAS H. MORGAN LIZA SOLOMON, NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS Mr. Dickey. All right, Douglas Morgan, Chair, National Alliance of State and Territorial AIDS Directors, Assistant Commissioner, Division of AIDS Prevention and Control, New Jersey Department of Health; accompanied by Liza Solomon, who is a doctor of public health, Vice Chair and Director of AIDS Administration, representing the National Alliance of State and Territorial AIDS Directors. Thank you for coming. Mr. Morgan. Good afternoon. Thank you, Mr. Dickey. As you indicated, I am Douglas Morgan, the AIDS Director for the State of New Jersey, and Chair of the National Alliance of State and Territorial AIDS Directors, NASTAD. I am accompanied today by NASTAD's Vice Chair, Doctor Liza Solomon, who is the Maryland State AIDS Director. I want to describe for you the critical HIV prevention and care issues our programs are facing for fiscal year 1998. My written testimony details the funding levels we believe are essential for HIV prevention and surveillance programs at CDC and Ryan White Title II programs at HRSA. I want to touch on several key points which are of great concern to State AIDS directors nationwide. I will begin with HIV prevention where we have seen numerous Federal requirements tie the hands of States and their community planning groups and divert our resources and attention from primary HIV prevention efforts. Case in point, the availability of clean needles and syringes for injecting drug users. The Administration's proposed budget for fiscal year 1998 HIV prevention is properly targeted to injecting drug users since 36 percent of all AIDS cases are linked to the sharing of non-sterile drug injection equipment. However, the Administration and the Congress are not providing States with the proper weapons to fight this war. The resources are insufficient and the program emphasis hampers our work by excluding access to sterile injection equipment as a primary HIV prevention strategy for injecting drug users. The Federal Government has funded six major studies which show that needle exchange programs are an effective means to reduce HIV transmission. Several of the reports demonstrate that these programs do not encourage drug use. NASTAD believes that revoking the Federal ban on funding for needle exchange programs and accelerating the growth of such programs in the U.S. are urgent public health priorities. States that choose to include needle exchange programs as a component of their comprehensive strategies to prevent HIV should have a full partnership with the Federal Government to address the problem. There are a number of critical HIV prevention challenges in need of additional resources. CDC provides funding to State and local health departments to conduct HIV prevention programs including HIV counselling and testing, partner notification and referral, individual level and community-based HIV prevention interventions, and focused prevention efforts targeting specific populations at risk. Based on assessment of State and local program needs and emerging issues, NASTAD requests an increase of $75 million in fiscal year 1998 for CDC HIV prevention cooperative agreements, and an increase of $30 million in fiscal year 1998 for HIV/AIDS surveillance activities conducted by State and local health departments. I will turn now to our care and treatment programs, in particular, Title II of the Ryan White Care Act. The current Title II framework with core funding and a dedicated funding stream for AIDS drug assistance programs works. Both portions need attention and increased funding. Since fiscal year 1996, Ryan White Title II has included an earmark for the AIDS drug assistance funding, a dedicated appropriation that is efficient and should be continued. With the earmark, HRSA may not reduce the funding for the purposes of administration, evaluation, or technical assistance. Every appropriated Federal dollar is to be used for the exclusive purpose of providing FDA approved therapeutics to eligible persons living with HIV and AIDS in every State. Expanded access to therapies and advanced treatment diagnostics like viral load testing represent critical priorities for State Ryan White Title II programs nationwide. Now we need to make sure that the good news of recent medical breakthroughs can be realized among individuals who lack adequate health insurance. Further, the upcoming Federal guidelines in HIV therapy will soon dictate that patients start on therapy with a combination of drugs earlier in the disease in order to preserve immune function. Unfortunately, many State ADAPs nationwide are unprepared to offer this standard of care to eligible patients. These programs are already seeing exponential growth in demand and cost. NASTAD has tracked these trends closely and we have detailed these increases in the written testimony. In my own State of New Jersey, since adding the newest drugs to the State's ADAP formulary in October of 1996, monthly expenditures have already doubled from $375,000 to $750,000. Arkansas has seen a 15 percent growth in demand for AIDS drugs and a doubling of costs in the last six months. Mr. Dickey. What State? Mr. Morgan. Arkansas. Your home State, sir. Mr. Dickey. I just wanted to make sure the others were listening. [Laughter.] Mr. Morgan. The purpose of ADAP is, simply put, to provide treatments to prolong the lives of individuals with HIV disease who lack private insurance or who are not eligible for Medicaid. It is evident that many States will experience severe ADAP funding shortages or be incapable of providing a broader complement of coverage unless additional resources are secured. NASTAD requests an increase of $138 million in fiscal year 1998 for Ryan White Title II, composed of $53 million for Title II core funding, and an additional $85 million for dedicated State AIDS drug assistance programs. Thank you, Mr. Chairman. Both I and Doctor Solomon are willing to answer any questions you might have. [The prepared statements of Douglas Morgan and Liz Solomon follows:] [Pages 357 - 369--The official Committee record contains additional material here.] Mr. Dickey. No questions. Thank you. Mr. Morgan. Thank you. ---------- Tuesday, April 15, 1997. WITNESS VIRGINIA G. FOX, AMERICAN PUBLIC TELEVISION STATIONS Mr. Dickey. We have a special honor today in that the gentlewoman from Kentucky, Mrs. Northup will introduce our next witness. Mrs. Northup. Thank you, Mr. Chairman. It gives me great pleasure to introduce someone from Kentucky, someone that I have known for a long time and have great admiration for, and especially since I understand you are not allowing any questions. Mr. Dickey. That is exactly right. Mrs. Northup. So I will get everything I want to say in right now. It gives me great pleasure to introduce to you Virginia Fox. She joined Kentucky Education Television in 1968 and became its deputy executive director in 1975. In 1980, Mrs. Fox left KET to become president of the Southern Educational Communications Association. While there, she became the founding director of the Satellite Educational Resources Consortium, a provider of distance learning. Its members included KET star channels. She returned to Kentucky in 1988 as KET's chief operating officer and was named the executive director and chief executive officer in 1991. She has been one of the closest partners with KET in Kentucky's delivery of educational resources across our State. We look to her as somebody that is so knowledgeable about distance learning, about giving learning opportunities to people that live outside of easy access to learning centers. With that, I would like to introduce to you Virginia Fox. Mr. Dickey. And how many minutes have you decided she can talk? Mrs. Northup. Five. [Laughter.] Mr. Dickey. What an introduction. Mrs. Fox. I thank you so much, Mr. Chairman, for allowing that introduction from a lady I respect so much and am so pleased to see on this committee and in this city. Mr. Dickey. We are glad to have you. Mrs. Fox. Anyway, I am here representing the 179 public television licensees who provide universal access and equity in education to Americans. I know your network in Arkansas very well and Susan Howarth. In fact, the GED project I am going to talk about, we stole one of your adult education directors as one of the teachers. Mr. Dickey. Naughty, naughty. You should not do that. Mrs. Fox. Oh, yes, sir, but we are taking her to the whole country. And she is back. We did not keep her, we just stole her for a while. Mr. Dickey. All right. Good. Mrs. Fox. I am here to request support of the Administration's request of $325 million to the Corporation for Public Broadcasting for fiscal year 2000. As you know, CPB receives the Federal money that is actually appropriated two years in advance and then turns right around and gives it back to Arkansas, Kentucky, all the States in the Nation, about 75 percent of the money. It leverages a great deal. It is the most important money that we get. The average match here, our match is about $10 for every $1 Federal dollar. But for tiny stations it may be 30 percent of their budget. It is vital to all of us. As proud as Kentucky is, Representative Northup, of the $10-to-$1 match that we provide to the Federal dollars, we are even more proud of how the return for this relatively small investment leverages the billions that go into education each year. We leverage it in three ways: (1) Fiscally. It is free of charge, it is there, it is everywhere; (2) Physically. We have universal coverage of the United States. In Kentucky alone, 1,000,000 people do not have access to cable, as an example in one State; and (3) Motivationally. It is understandable, it is fun, it is attractive, and it is available. GED on TV is probably the clearest cut return on investment that we have made. Nearly 2,000,000 Americans since its inception have received a degree via GED on TV. I have got the statistics in the report, I would not give it to you. I can only tell you the Department of Labor would tell us that it leverages $10 billion a year added to the Nation's economy annually. In Kentucky, the students who have enrolled and passed their GED leverage $900 million back. We also are the size of a small college. Over 80,000 Kentuckians have received college credit via KET, one-third of whom could not have done it otherwise. We know that from the surveys. In the United States it is 400,000 a year, 3,500,000 since the inception. About an equal number go to college on the Internet via KET, via college credit courses done by Kentucky colleges and universities, and on the T-1 too, interactive video. I am using Kentucky examples because I know them best, but they are just examples. You know what is happening in Arkansas, Representative Dickey. The statistics are in the report on what we do directly for school students. But as a student who scored 99 percentile on verbal, which will not surprise you, when I graduated from high school and 8 percentile on math because the algebra teacher moved away after the first year of high school, I am deeply committed to distance learning and to equity in education. We have a bank of over 300 hours which 97 percent of the Kentucky teachers avail themselves of. We now know from studies you can throw all the money you want to at the schools, but the single most important factor is the preparation of the teacher in learning of the children. And the last, and I don't know how much time I have left-- how much? Mr. Dickey. You have 45 second remaining. Mrs. Fox. Okay. The last is the children. The latest Roper study, I am so excited about that, it demonstrated and showed that the children who watch public television are more apt to read a book afterwards, write a story, and they're more apt to use a computer at school. We have the image that we're elitist. Fewer children who watch public television as children have computers in their home but they are more apt to use the computer at school. I think that kind of says it all. We have finally made the turn of kids recognizing television and technology as a learning activity. I am going to wrap it up. We appreciate so much what you have done since 1968 for public broadcasting and earnestly solicit your support. [The prepared statement of Virginia Fox follows:] [Pages 373 - 382--The official Committee record contains additional material here.] Mr. Dickey. I will tell Susan you did an excellent job. Mrs. Fox. Thank you, sir. So does she. Thank you. Mr. Dickey. Thank you. ---------- Tuesday, April 15, 1997. WITNESS EDWARD P. RILEY, RESEARCH SOCIETY ON ALCOHOLISM Mr. Dickey. Next, Doctor Edward Riley, Professor at San Diego State University, and Director of the Center for Behavioral Teratology at San Diego, representing the Research Society on Alcoholism. Mr. Riley. Good afternoon. Mr. Dickey. One day at a time. One five minutes at a time. Mr. Riley. I will try. Mr. Dickey. Will you do it? Mr. Riley. I will do it. Mr. Dickey. All right. Mr. Riley. My name is Doctor Edward Riley. I am the Director of the Center for Behavioral Teratology at San Diego State University. I am pleased to appear before you today on behalf of the Research Society on Alcoholism, a professional research group whose 1,100 members conduct basic and clinical research on alcohol and alcohol abuse. Over the past few months, you have heard about numerous diseases, some of which affect millions of Americans and others only a few thousand. Alcoholism is a tragedy that touches all Americans. One in ten Americans suffers from alcoholism or alcohol abuse, and their drinking impacts on the family, the community, and society as a whole. Alcohol is a factor in half of all homicides, half of all motor vehicle fatalities, one- third of all suicides, and one-third of all accidental deaths. Every American is affected and all Americans bear the cost. Nearly 7,000,000 children live with an alcoholic parent, often in a chaotic home where they suffer physical and mental abuse. Ominously, a recent study reported that 30 percent of high school seniors drink heavily or binge drink at least once every other week. Alcoholism and alcohol abuse cost this Nation nearly $100 billion a year. Prohibition did not solve these problems and current therapy is simply not good enough. Only research holds the promise of effective prevention and treatment. However, alcohol research is woefully under-funded. The National Institute on Alcohol Abuse and Alcoholism, NIAAA, funds over 90 percent of all the alcohol research conducted in the United States. For 1997, the budget of NIAAA is $211 million. We are committing to alcohol research only $2 for every $1,000 lost from alcohol abuse and alcoholism. Mr. Dickey. Excuse me. Are you saying this is all for research? Mr. Riley. No. The $211 million is NIAAA's budget, both intramural and extramural. Mr. Dickey. How much did we spend last year on research? Mr. Riley. Slightly less than that. We got an increase this year. Mr. Dickey. This is trying to find a cure? Mr. Riley. This is trying to do basic research of cure, treatment, prevention programs. Mr. Dickey. Okay. Thank you. Mr. Riley. This is proportionally less than spent on other diseases that have a similar economic impact, such as cancer and heart disease. In 1996, NIAAA will fund just 21 percent of all their grant applications. In 1997, they are going to fund fewer than that. The comparable figure for the rest of NIH is 28 percent. This inability to fund outstanding grant applications comes at a time of unprecedented opportunities for alcohol research. Scientists funded by NIAAA in the collaborative study on the genetics of alcohol, the COGA project, have identified discreet regions on the human genome that contribute to the inheritability of alcoholism. This is the first success in the genetic mapping of a complex biological and behavioral disorder and it must be followed by expensive labor-intensive efforts to pinpoint and identify the genes of interest. Health providers therefore may one day be able to identify individuals at risk and target these individuals for prevention. Genetic research is also going to accelerate the rational development of drugs to treat alcoholism. One of the most promising areas of alcohol research is in the field of neuroscience and how alcohol affects the brain. For example, Naltrexone, a drug that blocks the brain's natural opiates, reduces the craving for alcohol and helps maintain abstinence. Ongoing clinical trials will help determine which patients benefit from this treatment and how the drug can best be used. Other drugs with advantages over Naltrexone are now being developed and tested. One of the most tragic consequences of alcoholism is Fetal Alcohol Syndrome. FAS is a permanent condition characterized by facial anomalies, small size, mental retardation, and behavioral problems. It is probably the most common preventable cause of mental retardation in the United States. My own research has involved both animal models and children with Fetal Alcohol Syndrome. Using magnetic resonance imaging, brain wave recordings, and behavioral assessments, we have identified in children specific changes in brain structure and function that result from heavy prenatal alcohol exposure. A better understanding of alcohol's effects on the developing brain should allow us to better target the treatment of these exposed people, allowing them to maximize their potential. An understanding of risk factors will help us target and prevent Fetal Alcohol Syndrome. Alcohol abuse and alcoholism are devastating problems of national importance. Alcohol research has now reached a critical juncture and the scientific opportunities are numerous. With the continued support of this committee and the Congress, I am optimistic that we're going to see significant advances in the next few years. The Research Society on Alcoholism request that funding for NIAAA in fiscal year 1998 be increased by $31.7 million, a 15 percent increase, to $243.6 million. This request balances the impact of this disease, the abundant research opportunities, the low success rate of grant applications at NIAAA, and well- known fiscal constraints. We deeply appreciate your past leadership on behalf of the NIH and urge your continued support in 1998. Thank you for your consideration. I would be happy to answer any questions. [The prepared statement of Edward Riley follows:] [Pages 386 - 393--The official Committee record contains additional material here.] Mr. Dickey. Where is the best known center for alcohol study? Mr. Riley. My gosh, I would have to say Scripps because I am there. Mr. Dickey. Where is that? Mr. Riley. In San Diego, Scripps Institute. Mr. Dickey. Okay. Great work. Mr. Riley. Thank you. ---------- Tuesday, April 15, 1997. WITNESS BARRY D. LINDLEY, THE COALITION OF EPSCOR STATES Mr. Dickey. Okay. Now we hear from the University of Arkansas. Doctor Barry Lindley, Vice Chancellor for Academic Affairs, Dean of the graduate school, and Professor of physiology and biophysics, University of Arkansas at Fayetteville, Arkansas, where my daughter is going to school, representing the Coalition of EPSCoR States. Welcome, Barry. Mr. Lindley. Thank you, Mr. Dickey, and thanks to the committee for this opportunity to speak on behalf of the Coalition of EPSCoR States. I am from the University of Arkansas for Medical Sciences where we are proud of our sister campus, the University of Arkansas at Pine Bluff, and my friends Lawrence Davis, Mary Benjamin, William Willingham. We work with them. We are proud of our area health education center for Southeast Arkansas which has its headquarters there in Pine Bluff. We are appreciative of the help you have been in strengthening all the programs throughout Arkansas. Mr. Dickey. You would have to say that since I am the acting Chairman today, wouldn't you? Mr. Lindley. No, but because we really appreciate it. We have crafted and pruned some words which you have in written testimony. I am going to touch on just a few points. First of all, I am here specifically to speak on behalf of the program called IDeA at NIH, the Institutional Development Awards. It is the NIH brand of EPSCoR programs. EPSCoR is a program that was first started through the National Science Foundation and dedicated to the proposition that strengthening science in the country meant developing talent throughout the country, not just on the East Coast or the West Coast, but on the Middle Coast as well, and that scientists representing the talent available in these places needed to build environments so that their talent could flourish. It is a program designed to provide funding to move them to competitive status so that they can add to the strength of the nationwide enterprise. It is a merit-based program, peer-reviewed program. It generally requires at least 1-for-1 match which comes from institutions, sources through their own States, through, in our case, clinical income, or what have you. It is a good investment. I want to mention briefly what it has meant specifically for Arkansas. Some of the other members of the committee have programs in their own States. Mrs. Northup has a program in Kentucky, Representative Istook has one in Oklahoma. In Arkansas, in 1990, we ranked 43rd in the country in NIH funding. Traditionally, we had lagged way at the bottom. In the last ten years, we have increased our research awards eightfold, so that now we have moved into the middle third of the medical schools in the country. This is in part due to support through EPSCoR types of programs. We received support to build our programs in aging which have now paid off with a $25 million grant from the Donald W. Reynolds Foundation, the largest private gift to higher education in Arkansas history. Our program in neuroscience, which got started with EPSCoR support, now has received a competitive large program project grant from the National Institutes of Health. We currently have support for a center on opportunistic infections. You have already heard a couple of speakers today talk about the problems of patients with skin disorders where they are now much more susceptible to infections, patients with AIDS, patients receiving bone marrow transplants for cancer treatment, patients with cystic fibrosis. Many diseases create a burden of unusual susceptibility to infection on the part of the patient. We have developed a center for opportunistic infections to apply a wide range of basic and clinical research. We feel confident that this program, which has been supported by IDeA, will pay off nationally. Our research on tuberculosis, for example, already is part of an international team. We are drawing about $100,000 a year in license income for molecular biology techniques we developed to identify tuberculosis organisms. It has been a great thing for Arkansas and it has been a great thing for the country and for health around the world. There is a pending request by the President for $2.6 million for the NIH IDeA program. The NIH target five years ago when they laid out a time line for development of this program called for $17 million for the program in this coming fiscal year. We are requesting an additional $10 million, for a total of $12.6 million within NIH funding to continue to build this way to exploit the talent that is present in these States which historically have been poorly represented in NIH funding. We appreciate the general support for biomedical research that this committee has supported, that you have supported personally, that the Congress has supported. Any consideration that can be given to strengthening the NIH IDeA program would be very much appreciated. I would be glad to answer questions. I thank you for the opportunity to appear. [The prepared statement of Barry Lindley follows:] [Pages 396 - 404--The official Committee record contains additional material here.] Mr. Dickey. The only question I have is, do you want any more than my 100 percent support? Mr. Lindley. All your friends, too. Mr. Dickey. All right. I will go after it. Thank you, Barry. Have a good trip back. Mr. Lindley. Thank you. ---------- Tuesday, April 15, 1997. WITNESS HENRY A. FERNANDEZ, ASSOCIATION OF UNIVERSITY PROGRAMS IN HEALTH ADMINISTRATION Mr. Dickey. Henry Fernandez, President and Chief Executive Officer for the Association of University Programs in Health Administration. You have five minutes, sir. Mr. Fernandez. Thank you, Mr. Dickey. Good afternoon and thank you for your patience this afternoon. I am Henry Fernandez and I am the President and CEO of the Association of University Programs in Health Administration. You will be pleased to know those are 105 of the premier universities throughout the United States that prepare what we think of as the health care generals, the folks who run the health care system. While unfortunately Pine Bluffs is not necessarily a member of our Association because it does not have a health administration program, Arkansas at Little Rock does and, in fact, it has been the premier program providing health care executives throughout all of the wonderful State of Arkansas. I thank you for the opportunity to spend a little bit of today with you. Mr. Dickey. Excuse me, Mr. Fernandez. What do you say we don't have a program for? Mr. Fernandez. You do not have a health management program at the master's level at Pine Bluff. But I suspect, Representative Dickey, that I soon will be hearing from Pine Bluff and I will be delighted to engage them. Mr. Dickey. Thank you. Mr. Fernandez. Mr. Dickey, when I testified before your subcommittee last year, I described the Public Health Service as a three-legged stool. One leg of the stool is research and is represented by the National Institutes for Health and the Agency for Health Care Policy and Research, AHCPR. The second leg is prevention and is represented by the Centers for Disease Control and Prevention. The third leg, which is the focus of my inquiry today with you, is the provision of services, and that is best achieved through the programs of the Health Resources and Services Administration, HRSA. Last year the subcommittee provided national leadership and a sustaining level of support to that third leg, as it provided to the other two, and ensured that the Public Health Service could continue to function well and effectively. I am disappointed to tell you, Representative Dickey, that the proposed budget for fiscal year 1998 removes that third leg that maintains the Public Health Service balance and the capacity to effectively meet its mission. It may well be that in Washington a two-legged stool can stand up, but I do not think it can in Arkansas and certainly not in New York where I come from. The budgetary decision reflected in this proposal is ill- advised and short-sighted. It is a well known fact that the amount and volume of the training and services that are provided by HRSA far exceed the relatively small amount of money appropriated for health professions and nursing education services. The other professions will speak for themselves when they come before you and the subcommittee this week and next. For my part, I would like to talk to you about the importance to you and to everyone of your constituents in developing the best qualified, most competent, most highly trained health care managers we possibly can. We are all aware of the Federal support for health care, well over $300 billion. When you take into account on top of that what is done privately through your constituents and insurance, it comes out to a $1 trillion industry. With that much at stake, with one-seventh of the economy hanging in the balance, how much money does our Federal Government spend to train men and women who run hospitals, long-term care facilities, managed care programs that deliver services to your constituents? In the current year, it will spend $1.1 million. However modest that amount is though, we appreciate and value the funding that we have received and believe that we have effectively applied it to benefit our health care delivery system. In fact, we are grateful for this subcommittee and your colleagues in the Senate for their past support. We strongly believe that our Government is losing a real opportunity to improve health care in higher education by not doing more in this area. But we understand the realities. Our graduates run the largest and most complex health care facilities in the country; however, they also run the rural clinics and hospitals and inner-city facilities. Nowhere is the need for better management more important than in those facilities that attempt to effectively provide for the chronically underserved. With changes enacted by Congress in the reauthorization of these programs in 1992, there is a strong funding priority placed on sending trainees to health care organizations that serve those who are not otherwise well served by our health care system. Because of your leadership, health administration trainees provide important services while they learn and actually make a contribution to the strength of our health care system. They help to promote a smooth running system today while they are learning for tomorrow. As you know, Mr. Dickey, the proposed budget places health professions and nursing education programs into five clusters. If you review them carefully, if all of last year's appropriations were included in this year's new cluster, it would total $82 million. But it does not. Instead, over 90 percent has been eliminated, virtually ensuring the abolition of support for effective health management by the Federal Government. Mr. Dickey, this subcommittee has demonstrated great wisdom through its support of the health professions and nursing education programs. All of us who are involved in the programs are grateful for your support. An existing cost-effective, carefully balanced, and well-functioning system will derail if the President's proposal is at all considered. Today we ask you once more to exercise your leadership and wisdom and do what is right for your constituents and for an effectively managed health care system. The Association of University Programs in Health Administration supports the recommendation of the Health Professionals and Nursing Education Coalition that the Title VII and Title VIII programs be funded at $3.2 million for 1998. Mr. Dickey. Mr. Fernandez, you are going to have to summarize and then put the remainder of your statement in the record. Mr. Fernandez. I will summarize. If you do this, you will ensure the continued necessary Federal presence in health management education. If you accept the proposed budget, it will effectively be the death knell of the Federal support for health management. We appreciate the wisdom that this committee and the Congress has in the past shown in supporting these programs and we encourage you to continue to exercise your independence and promote quality health care education programs in health care delivery. The support our Government has made to improving the skills of its professional managers has played a significant role in making the U.S. health care system with all its faults the envy of other nations. Now more than ever the system needs your continued support. Thank you very much. [The prepared statement of Henry Fernandez follows:] [Pages 408 - 415--The official Committee record contains additional material here.] Mr. Dickey. Thank you very much. Come back and see us. The subcommittee stands in recess until 10:00 a.m. tomorrow morning. Wednesday, April 16, 1997. WITNESS CAROLYN ROBINOWITZ, M.D., AMERICAN ACADEMY OF CHILD AND ADOLESCENT PSYCHIATRY Mr. Dickey. The subcommittee will come to order. As we begin this morning's hearings I want to remind witnesses of two new provisions in the rules of the House. In addition to the written statement, witnesses must submit a curriculum vitae and a statement of Federal grant of contract funds they or the entity they represent have received. If you have any questions concerning the applicability of this provision or questions as to how to comply, please contact the committee staff, and not for sure the acting committee Chairman. Carolyn Robinowitz, Dr. Robinowitz, Associate Dean for Students, Georgetown School of Medicine, representing the American Academy of Child and Adolescent Psychiatry. Welcome. You have got five minutes. Dr. Robinowitz. Thank you, Mr. Chairman. I am Carolyn Robinowitz, I am a child and adolescent psychiatrist. I am the Associate Dean at Georgetown University School of Medicine. I am representing the American Academy of Child and Adolescent Psychiatry. The Academy appreciates this opportunity to testify before you today regarding the 1998 appropriations for the National Institute of Mental Health and the Substance Abuse and Mental Services Administration. The American Academy of Child and Adolescent Psychiatry is a national professional association of over 6,300 child and adolescent psychiatrists. Now, we are physicians who have completed a general psychiatry residency as well as a two year residency in child and adolescent psychiatry. Our work is designed both to promote healthy development of children and to evaluate, diagnose and treat children and adolescents and their families who are afflicted by disorders of feeling, thinking or behavior. Child and adolescent psychiatrists are uniquely qualified to integrate knowledge about human behavior and development from the psychological, biological, familial, social and cultural perspectives. We use scientific, humanistic, and collaborative interdisciplinary approaches to diagnose this treatment as well as the promotion of mental health. Research into the disorders of childhood and adolescence is a very important part of the Academy's mission. Over the years, we have been pleased at the expansion of research as we learn more about the development and functioning of children and adolescents. It was with the NIMH and the Institute of Medicine that we really recognized and defined the shortage of researchers investing early life emotional disorders, prevalence, reasons for onset and treatment. As recently as 10 years ago, both of these organizations reported the critical need for expanded research training programs, enhanced initiatives for practitioners to go into research, and for a consortium to generate and implement this program. The response to this has been very good, and we can report to you a great deal of satisfaction at what really are beginning steps. After only three years of the five year plan, which was Congressionally requested, the research on child and adolescent mental disorders, the basic behavioral and biomedical research focusing on issues of development increased by 179 percent, while receiving just 33 percent of targeted funding. And funding for research training similarly, the increase was 188 percent, but only 70 percent of what had been recommended in the five year plan. Now, maintaining existing projects and momentum for new research is so essential that the Academy has implemented an aggressive campaign to increase the number of researchers to broaden diversity of their projects and to give technical assistance for research support. Research is a long pipeline. You first have to get students, usually medical students, interested in research and then specifically interested in behavioral neuroscientific research and then keep this going. And as opposed to a one on one direct relationship, you know that you have to nurture a lot of people to produce one good researcher and a certain amount of good research. I will highlight at a later point some of our student presentations, because I think they are very interesting to see what medical students working with mentors who are established researchers are doing, and how this bodes well, I think, for the future. I want to highlight the goals for the future for the Academy and for our research. The first is to develop and sustain a critical mass of basic and clinically oriented researchers focusing on mental disorders that affect children and adolescents. The NIMH's K-12 Young Investigator Development Program has allowed child and adolescent psychiatrists to move from a small research program to a major research center for five years and then back again to bring back their knowledge and experience and to nurture and mentor new people. That has been extraordinarily effective, and we can begin to see the results of that already. Secondly, we would like to stimulate a range of basic science and clinical research at the frontiers of scientific inquiry. This is really an exciting time for neuroscience research in general psychiatry as well as child and adolescent psychiatry. There are opportunities for breakthroughs in understanding of cause and effect as well as treatment that really we think can change the lives of those with mental illnesses as well as serve for prevention. The notion of outcome based medical care where we really look at what we are doing and study it scientifically is notnew. But I think it is expanding. What are our future research priorities? Well, first off, and most important, it is prevention and treatment of the prevalent or disabling disorders. The highest priority for us continues to be the development of safe and effective treatments for disorders such as childhood onset schizophrenia, bipolar disorder, major affective disorder, attention deficient hyperactivity disorder, and conduct disorder. All of these have problems not only with a great deal of morbidity, that is interference with growth and development, but in long term costs for the families, the patients themselves, as well as the country. Anything we can do to change that and to help them lead more productive, useful and satisfying lives is money well spent. A second area is the effect of psychotropic medications on children and adolescents. As you know, such medications tend to be used primarily off label, and are subject to a number of FDA concerns, as well as concerns for all of us. Many of these medications have been found to be clinically sound, but as their numbers grow, the research resources must be there to assess their effect on young, growing people. It is not acceptable simply to extrapolate the research on adults onto smaller sized children. Children are not just small adults. We need to do separate investigations very carefully. We need to utilize our research progress, which has been tremendous, in the areas of basic science to the understanding of major childhood mental disorders. Given the dramatic advances over the past decade in the developmental neurosciences, as well as human genetics, we have really unparalleled opportunities to advance our understanding of genetic and neurological and neurobiological mechanisms in the pathophysiology of childhood and adolescent disorders. Neuroimaging techniques such as magnetic resonance imaging will prevent non-invasive visualization of changes in blood flow. Genetic research specific to child and adolescent mental disorders also is growing rapidly, as these are important contributors to the pathogenesis of a number of child and adolescent mental disorders. We can look at such areas as early brain development. Mr. Dickey. We have run out of time. I forgot to warn you at four and a half minutes. I am sorry. Dr. Robinowitz. May I have 30 seconds? Mr. Dickey. No, ma'am, if you can just submit the rest of your support. Dr. Robinowitz. Okay, thank you very much. [The prepared statement of Carolyn Robinowitz, M.D., follows:] [Pages 420 - 428--The official Committee record contains additional material here.] Mr. Dickey. Thank you, ma'am. I am sorry to be so strict. ---------- Wednesday, April 16, 1997. WITNESS LYNN A. DRAKE, M.D., AMERICAN ACADEMY OF DERMATOLOGY Mr. Dickey. Dr. Lynn Drake, President-Elect of the American Academy of Dermatology, representing the American Academy of Dermatology. Welcome. Dr. Drake. Thank you, sir. Mr. Dickey. You have five minutes. I will try to notify you at four and a half. Dr. Drake. I am pleased to not only be President-Elect of the American Academy of Dermatology, the group I represent today, but I am also Professor and Chairman of the Department of Dermatology at the University of Oklahoma Health Sciences Center, the home State of Congressman Istook, who is a member of this subcommittee. Mr. Dickey. Are you proud of that? [Laughter.] No comment. Dr. Drake. Yes, sir, absolutely. You bet. You have my written testimony, so I am just going to kind of chat with you for a moment about what I think are important issues. Biomedical research is actually the basis upon which all medical care is based. Your committee and the Congress as a whole has been very generous in its support of biomedical research. Without it, we would not be the world's leader in health research and the number one export that we have in the health arena is the results of our research, as well as much of our basic medical care isexported. So, I want to thank you for your support and hope that that will be continued. Another thing that may not have been mentioned is that our research in biomedical areas also contributes to the economic growth in other areas of our economy. It has been estimated that there is as much as $40 billion of benefit to our economy from biomedical research as an end result, as you go down the line. I think that is an important notion. Because it creates jobs, it creates exports, it benefits our patients, and it benefits citizens. So biomedical research is more of a foundation than we are used to talking about, in my opinion. Now, then, of course the Academy supports the increases recommended, 9 percent as recommended by the judgment of professional staff. We appreciate that increase in the NIH funding for 1998. In our area, we are also very supportive of the CDC's prevention programs, because so much of skin disease is preventable. Mr. Chairman, we in dermatology treat over 3,000 diseases of the skin, hair and nails. Over 60 million Americans are affected by skin disease, at a cost of about $7 billion a year. Skin diseases are real important. We tend to ignore them, because often they are not life threatening. But they are emotionally and psychologically devastating. Because if you have something on your skin, other people see it. If you have something in your heart, people may not know it. If you have something in your liver, people may not know it. But if you have got psoriasis all over your body, it interferes with your ability to get a job and it interferes with your ability to function. If your child has alopecia areata, which is a disease where you lose your hair for no particular reason that we know of, these kids go to school, it affects their lives, it affects their ability to interact with other children. It is devastating. Skin disease, because it is visible, although they are non life threatening diseases in many instances, they are devastating. We really need to continue working on these kinds of rare diseases that impact peoples' lives. Now, I want to move into another disease where there has been a really beautiful advance this year in research, and that is skin cancer. Skin cancer, of all the new cancers reported in the U.S. each year, is the largest number. What is really interesting is---- Mr. Dickey. Is that melanoma? Dr. Drake. No, sir, melanoma is part of it, but it is also basal cell carcinoma, and squamous cell carcinoma. About 80 percent of skin cancers are either basal cell or squamous cell. What is particularly interesting about them is they are preventable for the most part. Because they are in direct correlation with sun damage. The CDC is an important component, the education and prevention programs, because if we can educate people and get them to stay out of the sun, we can help prevent it. As a matter of fact, I want to be sure to invite you and your whole staff and the committee, we are doing, the D.C. Dermatology Society is doing their annual screening on the Hill. It will be on May 7th between 10:00 and noon at the Rayburn first aid station, Room B344. Mr. Dickey. Is there going to be any sunbathing in connection with that? Dr. Drake. Well, maybe we will hand out some sunscreen. But past that, I think we should not encourage sunbathing. But melanoma, you commented on another very interesting thing, melanoma is a deadly form of skin cancer. There are 40,000 new cases of melanoma this year alone, and 7,300 Americans will die from this disease. It affects primarily, the highest incidence, prevalence, rather, is in older white males. But what is interesting, it is the most common cancer among people between the ages of 25 and 29. So this is a devastating disease. The research advance that I wanted to mention to you has to do with basal cell carcinoma. It centers around a subset of basal cell carcinoma called the basal cell nevus syndrome, which people get just dozens and dozens and dozens of basal cells. And we do not know why. What has happened this year is scientists have identified the gene that is the cause of this rare inherited disorder. So we are very optimistic, because we have identified the gene for one form of it. Perhaps we can find the deficit where UV radiation is so damaging, and precipitates more basal cells. Mr. Dickey. Thirty seconds. Dr. Drake. I want you to know that skin disease affects a lot of people, and I want you to know that we are very appreciative of your support, and we hope you will continue it. [The prepared statement of Lynn Drake, M.D., follows:] [Pages 432 - 440--The official Committee record contains additional material here.] Mr. Dickey. Thank you, ma'am. You did a good job. ---------- Wednesday, April 16, 1997. WITNESS NANCY N. FUTRELL, M.D., AMERICAN ACADEMY OF NEUROLOGY Mr. Dickey. Dr. Nancy Futrell, Associate Professor of Neurology, Medical College of Ohio, representing the American Academy of Neurology. You are going to tell me that Mike Oxley is your Congressman, is that what you are going to tell me? Dr. Futrell. Marcy Kaptur is my Congresswoman. Mr. Dickey. That is all right. Okay. That is better than Ernie Istook. [Laughter.] Dr. Futrell. I am glad to know that. Thank you, Mr. Chairman. I am Nancy Futrell, Associate Professor of Neurology from Medical College of Ohio. I am here as an NIH funded researcher. I do both basic animal research and clinical research in the area of stroke. I am also here as patient with neurological disease who has been the beneficiary of medical research. I was diagnosed in 1972 with myasthenia gravis. In 1978, that disease was cured due to new medical therapies which were developed for a disease that was once chronic and 15 percent fatal. Mr. Dickey. Was that with medication? Dr. Futrell. With medication and surgical treatments, the disease was cured in 1978. I am here representing the American Academy of Neurology. That is an organization of 15,000 practicing neurologists and neuroscientists in the United States. I am also representing 50 million patients with neurological diseases. The diseases that I treat were considered hopeless one or two decades ago. But due to the funding produced by the efforts of this subcommittee and the full committee, we have been able to find important treatments and even cures for some of these diseases. My particular interest is in the area of stroke. In June of 1996, the FDA approved TPA, which is a clot busting drug, for the use in patients with stroke within three hours of the onset. I had the opportunity to use that drug shortly after it was approved on a 53 year old patient who came in with a severe stroke. She was unable to move her arms and her legs, she was unable to talk. I gave her the drug, and within 10 minutes she started to move her toes. Within three hours, this woman was able to walk and talk. She is now a healthy 54 year old woman awaiting the birth of a grandchild. After having practiced stroke---- Mr. Dickey. What was the cost of that treatment? Dr. Futrell. The cost of the TPA itself was about $1,000, and the cost of a hospitalization would have been about $9,000 in total. This is a woman who in the past would either have been dead or would have spent the rest of her life in a nursing home. So it was a tremendous cost savings. After watching patients with stroke have their brain destroyed for years, I have to tell you, it was the most rewarding professional day of my career to see a stroke literally stopped in its progression. Mr. Dickey. Why is that lady not here in place of you? Dr. Futrell. I will bring her next time if you would like. [Laughter.] Mr. Dickey. Excuse me. Dr. Futrell. I do not want to give the impression that we are finished in our progress with stroke, however, this drug is dangerous. About 6 percent of the patients who receive this drug bleed. And the bleeding may be fatal. There are some number of patients who do not respond to this drug. It is not perfect in its efficacy. We are now looking for safer, more effective treatments. The other problem we have is a major public education initiative, which is underway with NINDS, because we need to let our patients know the warning signs of stroke. We need to educate more physicians on stroke prevention, and to develop the emergency machine to get the patients into our emergency rooms in time. When it comes to stroke, time is brain. We need to learn to work with that better. There is another area of interest. I am here sort of as the unofficial representative of the baby boomers today. We are definitely entering middle age, and are prepared toincrease the ranks of the elderly over the next few decades. Which means that we need to realize that the incidence of Alzheimer's disease is probably going to double or triple or even more over the next few decades. This is also no longer a hopeless disease. We have identified genes that give patients risks for Alzheimer's disease, and we have also identified genes that are protective against the development of Alzheimer's. If we understand how these genes function, these may lead to important preventive therapies. In addition to that, there are studies now of vitamin E and ibuprofen and other drugs in preventing stroke. Multiple sclerosis is another disease that affects young Americans. I watched my sister deteriorate from 1974 and these treatments have stopped the progression in the last three years of her disease. We believe that through additional medical research we can improve the condition of these diseases even more. We would like to thank this committee for its efforts in the past and support the request for a 9 percent increase in NIH funding, with a particular emphasis on brain disease, and an emphasis in clinical research and the training of clinical researchers. Thank you. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness.] [The prepared statement of Nancy Futrell, M.D., follows:] [Pages 443 - 450--The official Committee record contains additional material here.] Mr. Dickey. Good job, Nancy. Thank you. ---------- Wednesday, April 16, 1997. WITNESS JAN TOWERS, AMERICAN ACADEMY OF NURSE PRACTITIONERS Mr. Dickey. Ms. Towers. How are you doing, Jan. Director of Governmental Affairs, Practice and Research, representing the American Academy of Nurse Practitioners. You have five minutes. Thank you for being here. Ms. Towers. My name is Jan Towers. I am a practicing family nurse practitioner. Today, I am representing the American Academy of Nurse Practitioners, the organization that represents over 17,000 nurse practitioners of all specialties throughout the United States. We are here today to speak for the need for continued funding, Federal funding, for nurse practitioner and nurse midwife educational programs and traineeships for the coming fiscal year. As has been pointed out in the past years, nurse practitioners and nurse midwives constitute an effective body of primary care providers that may be utilized at a cost savings in both fee for service and the managed care arenas in this country. Savings to the Federal Government of greater than $55 million in the Medicare program are estimated with full utilization of nurse practitioners in that system. Likewise, managed care data is becoming available that demonstrates an aggregate patient per month cost savings of over 50 percent among patients seen by nurse practitioners when compared to similar patients being cared for by physicians. Other cost savings that can be realized by the Governmentwhen nurse practitioners and nurse midwives are appropriately utilized include savings due to reductions in emergency room visits and hospitalizations and savings associated with treatment of illness in its early stages. Multiple studies in both fee for service and now managed care have been conducted that demonstrate cost savings in diagnostic testing, prescribing and hospitalizations and emergency room use when these two groups of providers are utilized to provide primary care to populations of all ages. As this committee knows, nurse practitioners and nurse midwives are highly qualified primary care providers who have demonstrated their ability and interest in providing primary medical care to individuals in families in both rural and urban settings, regardless of age, occupation or income. The quality of their care has been well documented over the years. With their advance preparation, they are able to manage the medical and health problems seen in the primary care and acute care settings in which they work. I am not going to go into a description of what nurse practitioners do or where they are located. I think that is well known by members of the committee. According to data collected by the American Academy of Nurse Practitioners, 82 percent of nurse practitioners are employed in primary care settings and over 50 percent of their patients have family incomes in the poverty range. In order to guarantee the proper preparation of nurse practitioners and nurse midwives, assistance in the development of high quality programs continues to be needed across the country. The funding for such programs has always been limited, and should always be more. But the value and worth of such funding continues to be indisputable. Two years ago, only 14 new programs out of 127 applicants were able to be funded for a three year period at the amount of a little over $200,000 per program. Last year, new applicants were not even solicited as the Division of Nursing sought to fund the approved applicants unable to be funded the previous year. Out of that pool, another 21 programs were able to be funded. This year, 88 programs from 35 States have applied for assistance. Again, only a small number will be able to be funded at these modest amounts. While the sums of money described here are but a drop in the bucket compared to investments made by the Federal Government to underwrite the costs of preparing other medical professions, the loss of this funding would create significant problems and erect additional barriers to the effective utilization of the most cost effective primary health care providers in our health care system. Likewise, traineeship monies are being utilized by students in all 50 States and the District of Columbia. These monies are of particular importance in the recruitment of nurse practitioners and nurse midwives in underserved communities. Again, while the funds fall short of the mark for assisting in the preparation of these important cost effective health care providers in the system, the amounts appropriated in the past have helped to reduce barriers for many students desiring to become nurse practitioners and nurse midwives. Surveys of nurse practitioners and nurse midwives have shown this investment to be a good one in terms of assisting students who otherwise might not be able to return to school and in terms of adding providers to care for rural and urban underserved in this country. In addition, the need for funding for special projects to evaluate the worth, quality and cost effectiveness of nurse managed centers and other creative applications of primary care services by nurse practitioners and nurse midwives and the need for continued data collection in this realm can only reinforce the fact that the appropriation should not only not be cut, but that they should actually be substantially increased if the Government is truly seeking methods to provide quality, cost effective care to all populations, especially to the underserved as it says. While we once again recognize the difficult decisions that must be made regarding HHS appropriations for the coming year, it seems logical that continued appropriations for nurse practitioner, nurse midwife, educational programs, traineeships and program exploration would still be a wise investment. We thank the members of the Appropriations Committee for their efforts on behalf of nurse practitioners and nurse midwives and the patients they serve. We know you recognize the value of our services. Mr. Dickey. Ma'am, could I take some of your time? We have got 30 seconds. Ms. Towers. Sure. Mr. Dickey. Let me ask you this. Do you know of any circumstances, particularly in rural America, where the nurse practitioner is put in too much an area of responsibility? Ms. Towers. In all honesty, no. A nurse practitioner knows what her limitations or his limitations are, and so that is not a problem. Mr. Dickey. What I have heard from nurses, is that they feel uneasy in some of the areas, in the rural, rural parts of America. But you have not heard any of that? Ms. Towers. No. No, sir. Mr. Dickey. Okay. Ms. Towers. One of the things that does happen is when you have a new nurse practitioner graduating from a program, sometimes stepping straight into a situation where they would be practicing solo would not be the best thing to do. But Ithink most nurse practitioners recognize that and don't move into that kind of position until they are ready to do so. [The prepared statement of Jan Towers follows:] [Pages 454 - 460--The official Committee record contains additional material here.] Mr. Dickey. Good. Thank you very much for your testimony. ---------- Wednesday, April 16, 1997. WITNESS ROBERT E. HANNEMANN, M.D., AMERICAN ACADEMY OF PEDIATRICS Mr. Dickey. Dr. Robert Hannemann, President of the American Academy of Pediatrics, representing the American Academy of Pediatrics. Welcome, Dr. Hannemann. You have five minutes. Dr. Hannemann. Thank you, Mr. Chairman and members of the committee. I am Robert Hannemann, President of the American Academy of Pediatrics. I am a practicing pediatrician from Lafayette, Indiana. On behalf of our 53,000 members and our other pediatric colleagues in the Society for Adolescent Medicine and Ambulatory Pediatrics, I would like to thank the subcommittee for the opportunity to present this statement. I will focus my oral remarks on just a few issues and submit our written statement for the hearing record. Let me start by saying, as pediatricians, we see the integral relationship between basic research and the care we provide. We see the impact of poverty and violence on the health of our children and our adolescents, and we know that the future of our work force depends on the decisions that we make today. Each year, 150,000 children are born with serious birth defects, causing about 1 out of every 5 infant deaths. These birth defects are also the leading cause of disabling conditions in children, which cost all of us, families and our Government, billions of dollars each year. Vitamin supplements containing folic acid have been proven to prevent disabling birth defects, such as spina bifida and anencephaly. Unfortunately, this fact is not widely known. Our funding recommendation will help us remedy this by supporting multiple community approaches, including targeted educational campaigns, health education, surveillance and increased training of providers and other health professionals. Working together, we have a potential to prevent 2,000 to 3,000 cases of these types of birth defects each year, thus potentially saving nearly $245 million per year. You may ask, how do we know about the positive effects of adequate folic acid, and that it can reduce birth defects. The simple yet obviously complex response is, we know this and so many other things because of the important pediatric research that has been conducted over the years at the Centers for Disease Control and Prevention, at the Maternal and Child Health Bureau, at the Agency for Health Care Policy and Research, and of course, the National Institutes of Health. Let me spend a moment discussing the importance of and the need for our continued investment in the full spectrum of pediatric research, basic, clinical applied and health sciences. Research in prevention of premature birth andtreatment of medical consequences has continued to reduce infant mortality. For example, research conducted at the NIH, specifically in the NICHD, on the Sudden Infant Death Syndrome, or SIDS, has clearly shown a relationship between infant sleep position and SIDS. The NICHD, in partnership with the Academy and other national organizations, has launched a national public education Back to Sleep campaign to advise parents, caregivers and health professionals to place babies on their backs to sleep. As a result, SIDS deaths have fallen by more than 30 percent in the last three years. But there is more that we must do, including ensuring that this important life saving message gets to all communities. Consider another important example, the development of surfactant which can be administered into the lungs of premature infants. This has resulted in fewer deaths of infants from respiratory distress syndrome, and has saved an estimated $90 million a year in hospital costs. My own personal clinical research and practice in this area gives me graphic evidence of the importance of this research on a daily basis. There are many important opportunities for additional pediatric biomedical, behavioral and health services research which promise significant returns on investment, not only in improved health care for children today, and economic productivity tomorrow, but also in new insights into the prevention and treatment of illness and conditions among adults. As this subcommittee once again is faced with difficult choices and multiple priorities, we know that as in past years, you will not forget America's children. Thank you. [The prepared statement of Robert Hannemann, M.D., follows:] [Pages 463 - 471--The official Committee record contains additional material here.] Mr. Dickey. Thank you, sir. Do you yield back the balance of your time? Dr. Hannemann. Yes, I would. [Laughter.] Mr. Dickey. Thank you. I am going to mark you down extra, I am going to consider your request extra. [Laughter.] ---------- Wednesday, April 16, 1997. WITNESS JOAN SHAVER, AMERICAN ASSOCIATION OF COLLEGES OF NURSING Mr. Dickey. Joan Shaver, Dean of the College of Nursing, University of Illinois at Chicago, American Association of Colleges of Nursing. Welcome. You have five minutes. Ms. Shaver. Thank you. I am Joan Shaver, and I am Professor and Dean of the College of Nursing at the University of Illinois at Chicago, and a funded nursing researcher. I am testifying in support of the National Institute of Nursing Research at NIH, and the Nursing Education Act on behalf of the American Association of Colleges of Nursing, which represents over 510 baccalaureate, masters and doctoral nursing education programs in senior colleges and universities across the United States. We very much appreciate the past strong support for NIH and nursing education and thank you for the opportunity to testify today. While being sensitive to society's mandate to contain our costs, overall we respectfully recommend a 9 percent increase in NINR-NIH funding over the fiscal year 1997 levels. For NINR, that means going from $59.7 million to $65.1 million. Additionally, we urge the support of nursing education as a vital link to maintaining a productive health research agenda for us. Nurses are the largest group of health care professionals and form the backbone of health care, not just in hospitals, but in ambulatory care, public health departments, long term care facilities, skilled nursing homes, schools, hospice, communities and as well in corporations and private employ. We service people in all phases of illness, and often the most vulnerable. We help patients and their families manage difficult symptoms, resume self-sufficiency when illness is most debilitating or threatening, or transition from life to death, as well as help people learn to stay healthy. Our practice spans a spectrum of human issues that are real and immediate. So, therefore, is our research agenda. Just as some examples of the kinds of research done through the NINR, nurses are often in a position of helping people manage pain. Some recent NINR studies show that poor pain control following surgery is linked to enhanced tumor growth studied in animals, that a particular type of pain reliever works better in women than in men, and to refute the myth that infant pain following surgery is minimal. While research associated with life threatening diseases, such as heart disease, AIDS and cancer, is highly visible, the possibility of living with a chronic condition is a much more likely prospect for Americans, magnified by the graying of America. The frailties of aging and chronic illness are high on the agenda of nurse researchers. For example, NINR is supporting research to limit disruptive behaviors and to promote normal resting patterns in people with Alzheimer's disease by testing light therapy and behavioral modifications. Solutions to these issues of how to manage behaviors in the trajectory of Alzheimer's disease can help a family care for patients at home and avoid costly institutionalization. Actually, most of our--and this has already been testified to here--most of our health problems are related to behaviors like food, drink and substance abuse, inadequate stress management, along with exercise, sleep and social deprivations. Teaching people how to treat or prevent illness and promote health through modifying nutrition, sleep and exercise behaviors has long been emphasized in nursing. My own work involves looking at the role of sleep in a condition called fibromyalgia, a mysterious chronic illness with no known pathology that is clear at the moment, that affects upwards of 10 million Americans and women five times more often than men. So far, we do not know what contributes to this particular condition. Mr. Dickey. What are the symptoms? Ms. Shaver. The symptoms are chronic, debilitating fatigue, tender points at particular areas of the body, and a sleep disruption is always reported. Our study is designed to link evidence that there is a sleep disruption but also two separate bodies of evidence that there is a hormone disturbance. We are linking the hormone disturbance during sleep. The importance of that is that we can broaden our ideas about what may be effective treatments. It may be that the treatment should be behavioral sleep related treatments as well as perhaps hormone augmentation kinds of treatments also. There is usually complementary treatments that could be more effective and more necessary. Better treatments will save money, because right now, fibromyalgia accounts for 15 to 40 percent of all referrals to a rheumatologist. Other examples, nurses understand and study the importance of coordinating care. For example, through NINR, carefully planned early discharge from hospital with follow-up by advanced practice nurses sharply reduces tertiary care costs. Funds appropriated to the NINR represent only a little less than half a percent of what is appropriated to NIH. On that small amount of money, the NINR funds individual researchers, six specialized research centers, but also the training of nurse scientists at this point in time. Most of our universities are desperately in need of skilled researchers for faculty, because nursing is newer as a human health science, needing to amplify the synergy of discovery. Our commitment to research addressing the immediate issues of human health science means the education of nurses is central to cost effective, high performance health care delivery. We would like to encourage the support for maintaining the fiscal year 1997 level of funding for the Nurse Education Act at $65.4 million. Nurses are providing care to people who would otherwise not have health care. This has been mentioned already, but in Illinois, like in many other States, almost one half of the counties are medically underserved. Well educated nurses are needed to be in these areas. Other concerns of ours are present in our written testimony, and I thank you very much for the opportunity to be here. [The prepared statement of Joan Shaver follows:] [Pages 475 - 481--The official Committee record contains additional material here.] Mr. Dickey. Thank you, ma'am. Thank you for coming. ---------- Wednesday, April 16, 1997. WITNESS NANCY BRUTON-MAREE, AMERICAN ASSOCIATION OF NURSE ANESTHETISTS Mr. Dickey. Ms. Nancy Bruton-Maree, President, American Association of Nurse Anesthetists. Welcome, and you have five minutes. Ms. Bruton-Maree. My name is Nancy Bruton-Maree. I am the program director of Raleigh School of Nurse Anesthesia of the University of North Carolina at Greensboro, located in Raleigh, North Carolina. I am the President of the American Association of Nurse Anesthetists, AANA, and a practicing nurse anesthetist. I appreciate the opportunity to present my testimony to the committee on behalf of AANA. The AANA is a professional association that represents over 26,000 certified registered nurse anesthetists, CRNAs, in the United States. AANA appreciates the opportunity to provide our experience regarding Federal funding in nurse anesthesia educational programs under Title VIII of the Nurse Education Act. In the administration of anesthesia, CRNAs perform many of the same functions as physician anesthetists. Today, CRNAs administer more than 65 percent of the anesthetics given to patients each year in the United States. They are front line anesthesia providers in underserved urban areas, and are the sole anesthesia provider in 70 percent of rural hospitals. As you know, Title VIII programs focus on increasing the number of primary care providers and increasing the number of professionals serving in rural and underserved areas. The investment in the education of nurse anesthetists would assist in reaching these goals. First, a stable supply of CRNAs helps to ensure access to primary care services. CRNAs are traditionally not defined as primary care providers themselves, but provide services that support primary care. For example, a facility or professional that provides obstetrical care to pregnant women is generally recognized as providing primary care. Offering an epidural during labor and delivery is part of the obstetrical care. Therefore, the CRNA provides services that are vital to the quality of primary care. Often, the CRNA is the only provider of such services in rural areas. Second, CRNAs are the solo providers of anesthesia in 70 percent of rural hospitals. Rural eastern North Carolina is a good example. My program was begun in Raleigh in 1990, because of a shortage of CRNAs in the area. Only two large hospitals exist East of Raleigh, both located on the coast, with a large number of rural hospitals located between Raleigh and these other large facilities, all serviced by CRNAs. Continued Federal support of Title VIII programs will ensure a stable supply of CRNAs to such rural facilities all across the country. While there is little dispute that there is a surplus of many health care providers in certain parts of the country, this is not necessarily the case for the supply of nurse anesthetists. Nurse anesthesia programs across the country have stabilized, not increased, the number of graduates produced each year, averaging approximately 900 to 1,000 annually. Ongoing research by Dr. Michael Fallacaro, CRNA, Clinical Assistant Professor at SUNY-Buffalo, has established that a continued supply of 1,000 graduates per year will maintain the current ratio of approximately 8 1/2 CRNAs per 100,000 population, which is adequately societal demands for anesthesia. On the other hand, a drop in the number of graduates to 800 per year would result in a decrease to 7 CRNAs per 100,000 population. Therefore, in order to maintain a stable supply of 1,000 graduates per year, CRNA students need continual Federal support. Nurse anesthesia programs require a rigorous course of full-time study that does not allow students the opportunity to work outside their educational programs. Therefore, nurse anesthesia students rely heavily on Federal funding to assist them in meeting financial obligations during their study. Without this assistance, the number of nurse anesthesia graduates would surely decline. A decline in the number of nurse anesthetists would then result in a decline in the accessibility to services, primarily in rural areas, that depend on non-M.D. providers for the majority of the care. In the past, CRNAs have received $4 million authorized line item appropriation within Title VIII. In the past year, all of that money has been totally expended. AANA would like to see it continued in the future. Therefore, AANA recommends continued Federal funding for all nursing education at the level of $67.32 million, including a $2.848 million setaside for nurse anesthetists in fiscal year 1998. I thank the committee for your attention and this opportunity. [The prepared statement of Nancy Burton-Maree follows:] [Pages 484 - 492--The official Committee record contains additional material here.] Mr. Dickey. Thank you, Dr. Bruton-Maree. ---------- Wednesday, April 16, 1997. WITNESS NANCY MUNRO, AMERICAN ASSOCIATION OF CRITICAL-CARE NURSES Mr. Dickey. Nancy Munro, Clinical Nurse Specialist at Georgetown University, representing American Association of Critical Care Nurses. Welcome. And you have five minutes. Ms. Munro. Good morning. I am representing AACN in support of funding for the National Institute of Nursing Research, the Nurse Education Act and the Agency for Health Care Policy and Research for fiscal year 1998. AACN is a not-for-profit service organization dedicated to the welfare of people experiencing critical illness or injury. Our vision is one of a health care system driven by the needs of patients, where critical care nurses make their optimal contribution. The National Institute of Nursing Research at the NIH improves the quality of life for all Americans by promoting healthy lifestyles and behaviors. AACN strongly supports the NINR's goals of health care effectiveness, cost effectiveness, and assuring that the scientific agenda has a human aspect. Nursing research findings, once thought to affect only nursing practice, are now understood to be relevant to all areas of health care practitioners. As nurses providing care to the critically ill, one of the most important things we can do for our patients is provide relief for their pain and suffering. AACN is pleased that the NINR is playing a major role in NIH's pain research initiative. NINR sponsored scientists are conducting research, investigating whether men and women respond the same way to drugs used for pain relief. This research is important, because it offers the potential for women with increased pain relief for surgical pain as well as pain associated with nerve damage, cancer and other disease conditions. Pain is a costly health care problem, costing our Nation over $100 billion annually in lost productivity and health care expenses. AANC sponsors the Thunder Project II, a large sample, multi-site research project in partnership with seven other nursing organizations. The purpose of this research is to examine pain perceptions and responses of acutely or critically ill pediatric and adult patients to selected procedures. AACN supports the recommendation for a 9 percent increase for NIH in the year 1998. AACN also believes that education is a fundamental to professional growth, excellence and clinical practice and optimal patient outcomes. AACN is extremely disturbed by the cuts to health care professional education programs in the proposed fiscal year 1998 budget. The budget request consolidates existing multiple categorical grant programs under Title VIII and VII of the Public Health Service Act, and replaces them with five program clusters. The Nursing Education/Practice cluster includes the following programs: nursing special education projects, advanced nurse education, nurse practitioner/nurse midwife education, professional nurse traineeships, nurse anesthetist training, and nursing education. Funding for these specific nursing programs is cut from the current level of $63 million to $7.7 million in 1998. These programs are essential for providing support to strengthening the capacity of the nurse education and practice, training nurse practitioners and other advanced practice nurses and increasing nursing work force diversity. AACN supports the funding of Title VII and VIII programs at the 1997 level, plus inflation, which amounts to about $302 million. AACN firmly believes that research is needed to develop a scientific basis for critical care nurses practice, and to achieve a broad understanding and impact of the critical care nurses on patient outcomes. Science, based research as supported by the AHCPR, is an important complement to the biomedical research conducted at NIH. AHCPR's clinical research goes a step further by evaluating the effectiveness of new and existing medical interventions and clinical practice. As you know, in 1990, Congress passed the Patient Self- Determination Act. This is of particular interest to critical care nurses, in light of the Robert Wood Johnson study that followed 9,000 critically ill patients, and found discrepancies between the patients' end of life care directions and their actual implementation and treatment. This Act requires hospitals and nursing homes to inform patients admitted to their facility about their options in completing an advance directive or living will. Since there is no provision for implementation funding, patients and their families have not been helped. Advance directives, such as living wills and medical power of attorney, are the only vehicle to let professional health care providers know patients' wishes in case they become incapacitated and unable to make treatment decisions. In addition, advance directives do away with much of the wasteful and emotional cost of guilt and suffering as a result of being forced to make decisions about treatment for someone else without knowing their wishes. AACN is currently working to educate consumers about the Patient Self-Determination Act and its importance. The committee's support of AHCPR has provided AACN with resources to design a community outreach program to improve the completion for the rates of advance directives. AACN's research on advance care planning, including advance directives, has specific emphasis on education programs stressing the definition and documentation of health care preferences in catastrophic illness or injury. I appreciate this opportunity to present testimony before the committee on behalf of AACN. AACN looks forward to continuing dialogue with you and the members of thesubcommittee. [The prepared statement of Nancy Munro follows:] [Pages 495 - 503--The official Committee record contains additional material here.] Mr. Dickey. If you would, we do not have a copy of your testimony. Could you furnish that to us, please? Ms. Munro. Yes. Mr. Dickey. Thank you. ---------- Wednesday, April 16, 1997. WITNESS MELVIN SABSHIN, M.D., AMERICAN PSYCHIATRIC ASSOCIATION Mr. Dickey. Dr. Melvin Sabshin, Medical Director of American Psychiatric Association, representing the American Psychiatric Association. Welcome, Dr. Sabshin. Dr. Sabshin. Thank you, sir. That is an excellent pronunciation of my name, which most often is distorted. I am grateful to you. Mr. Dickey. You have five minutes. Thank you for coming. Dr. Sabshin. Yes, sir. I am here to represent the APA and to make testimony about the NIMH, NIDA, the National Institute for Alcohol Abuse and parts of the SAMHSA program. Let me say, it is a great honor to come and testify this year, specifically because this is the 50th anniversary of the NIMH. And I am proud of that. This is very meaningful for our field. It is also a good year vis-a-vis the parity legislation that passed, and we are very thankful for that. At the same time, this is a year when there has been enormous publicity about mental illness. I brought with me magazines, Newsweek, Time, U.S. News and World Report, that take up some of the new developments and research in this field and specifically talk about the agencies that have done such a good job. I am proud of that. You have my written testimony and I want to say that I would like to just make some summary comments about some areas of research developments that I think are very positive. At the same time, I want to talk about some areas of new opportunities for research. It is important to note that depressive illness is now eminently treatable. This is something that has evolved over the last few years. Now 80 percent of people with depression who are treated with a combination of medication and psychotherapy do indeed succeed. It is one of the most treatable illnesses, when we talk about chronic illnesses. When I speak about chronic illnesses, I want to make the point that in terms of the parity legislation, we have medication now that will help people cope over a lifetime and these people may need such treatment over a lifetime. It is important to note that this is now available. A recent study in California showed that for every dollar spent on treatment of people with drug and alcohol abuse, there is a $7 savings, especially in the context of crime and health care costs, an important development. Health care research has indicated that children's hospitalization can be prevented by adequate treatment. A new medication for alcoholism, naltrexone, blocks both the craving for alcohol and the pleasure when you go high, so it is very important to note that development. We are getting close to a preventive technique against cocaine abuse. Some of the animal research is very promising in thatregard and ought to be watched very carefully. In terms of the areas of opportunities, I just want to mention three very briefly, that the medications that we have available for children are not really designed for children. They have been extrapolated from adult work. We need to take a hard look at what is needed for children. Let me say, sir, that I am emphasizing children in my comments. I was here during the testimony of the agency people, and the questions that came up at this subcommittee related to children very heavily, so I chose that area at this time. The medications for children need to be looked at in a new sense. At the same time, the possibilities of medication and psychotherapy for children need some special attention. The problem of drug abuse in children and adolescents has been emphasized by many people. We need to know the pathways that lead to that use. Studies of those pathways might lead to an understanding of possibilities of reducing that. Fetal alcohol syndrome is a syndrome of broad neurobiological problems that develop after a mother has been involved in drinking during pregnancy. The need to study why some women drink so heavily during pregnancy is extremely important. I hope you will consider some of these new opportunities and I hope the committee will look at that. I have specified some of the budgetary needs for that in my presentation. I will ask you to consider that. And I do yield the balance of my time. [The prepared statement of Melvin Sabshin, M.D., follows:] [Pages 506 - 508--The official Committee record contains additional material here.] [Laughter.] Mr. Dickey. Thank you, sir, that is a minute we can well use. Dr. Sabshin. I am glad. Mr. Dickey. Let me ask you, the medication for alcoholism, I just hope you stress that. Dr. Sabshin. I did. And I hope I can do that even more. It is very important. Mr. Dickey. It is. Thank you. Dr. Sabshin. Thank you, sir. Mr. Dickey. You did a good job. ---------- Wednesday, April 16, 1997. WITNESS FELICE LEVINE, AMERICAN SOCIOLOGICAL ASSOCIATION Mr. Dickey. Now we have Dr. Felice Levine, Executive Officer of the American Sociological Association, representing the American Sociological Association. Welcome, and you have five minutes. Ms. Levine. Thank you, Mr. Chairman. I welcome the opportunity to talk with you today regarding fiscal year 1998 appropriations for the National Institutes of Health. I am Felice Levin, a social psychologist, and as you have indicated, Executive Officer of the American Sociological Association, a scientific society of more than 13,000 sociologists who are engaged in research, teaching and practice. In appropriating funds for the National Institutes of Health, this subcommittee's record is so impressive, because you have sent strong signals that funds should be used to coordinate among Federal health institutes, support essential health research and train the next generations of scientists. We commend and applaud this commitment. We also commend your support for balance in the types of research conducted by the National Institutes of Health. My colleague, Dr. Sabshin, has just outlined very important areas of fundamental, social and behavioral science work. And you, too, have recognized that social and behavioral factors importantly affect health. Because you recognized the compelling need to expand thetypes of research we conduct, we have a better balance between biomedical research and behavioral and social science on health. Today, I want to highlight my written testimony by talking briefly about coordination, research and training. First, coordination. Perhaps one of Congress' most important recent accomplishments regarding the National Institutes of Health was to conceive and support the Office of Behavioral and Social Sciences Research. Since 1995, what we affectionately called OBSSR has coordinated social and behavioral research across the National Institutes of Health and integrated it with biomedical research. For example, in fiscal year 1996, OBSSR addressed the violence issue by cosponsoring a request for applications entitled Research on Violence Against Women Within the Family. OBSSR took the lead in this initiative in collaboration with the Department of Justice's National Institute of Justice and eight DHHS agencies. This remarkable collaboration was the first interdepartmental initiative to address violence from a multitude of perspectives. OBSSR is playing a catalytic role in addressing some of our most pressing health problems and could productively use expanded resources. I can assure you, Mr. Chair, that an increase to $4 million for OBSSR in fiscal year 1998 would have a multiplier effective for every additional dollar, as we already have seen over the past two years of its performance. Second, research. I want to emphasize the importance of investing in basic health research and doing so fully inclusive of the social and behavioral sciences. One topic where we can see the powerful, positive impact of conducting social and behavioral science research relates to AIDS. Epidemics of the size and scope of AIDS require examination of the social context in which they occur. For example, sociological research demonstrates that when drug users educate other drug users about how AIDS is spread, they share equipment less, use shooting galleries less often, decrease their injections and are more likely to use new needles or sterilize needles. We have an urgent priority, too, as my prior colleagues have emphasized, to fund children's health initiatives, and to include a focus on behavioral and social science research. I need not remind this subcommittee of the ground breaking work supported by the National Institutes of Child Health and Human Development. NICHD work, addressing crucial health issues in our society, for example, how to teach parenting and nurturing skills, has been of monumental importance. It also supports and promotes research such as the sociological studies that have produced essential data on the economic impact of divorce and the consequences of growing up in homes with both parents. The NIH, as a family of institutes, has recognized the importance of the full life cycle, so the third research area I want to highlight briefly is aging. Federal funded research supported by the National Institutes is examining---- Mr. Dickey. You have 30 seconds. Ms. Levine. Then I would not briefly emphasize aging. I do want to say one word about training. The importance of really planning for our next generations. The kind of training program that the American Sociological Association would support from the NIMH over 23 years to train minority investigators to do quality scientific research in mental health has made a monumental difference in putting 350 researchers into that pipeline. I think as we think about research, we really need to simultaneously take seriously the training investments. And with that, I would like to conclude and offer our strong support for the recommended 9 percent increase in Federal support for the NIH. [The prepared statement of Felice Levine follows:] [Pages 511 - 520--The official Committee record contains additional material here.] Mr. Dickey. Thank you, ma'am. Good job. I turn the gavel over to Mrs. Northup, the gentlewoman from Kentucky. ---------- Wednesday, April 16, 1997. WITNESS CARMEN VALENZUELA, M.D., THE CENTER FOR VICTIMS OF TORTURE Mrs. Northup [assuming chair]. We are going to go a little out of order now, and I am going to ask Dr. Carmen Valenzuela to come forward. Dr. Valenzuela. Good morning. My name is Carmen Valenzuela. I am in exile in the United States for the last seven years. On February 10, 1990, I was kidnapped by members of the intelligence section of the Guatemalan Army who wanted information from my activities and conduct with the current government opposition. They detained me for eight days in a former military academy, located just a few blocks away from the American embassy in the heart of Guatemala City. Army officials tortured me, brutally beating me and slow puncturing my legs with wires. I still have scars and the remains of hypotrophy in the muscles of my thighs because of the specially designed to torture stick beating to inflict pain and avoid languishing. During my ordeal, they kept my hands cuffed and my head hooded all the time. They also applied to me the technique called ``the hood,'' consisting of tightening a plastic bag around my neck to force me to talk. When I felt I was going to suffocate, I had to stamp my feet so I would alert them that I could fade. I recall very distressfully their welcoming my remarks as they started to beat me: ``We are not going to kill you, you are going to scream for us to kill you.'' I was daily interrogated for hours. They forced me to take drugs to relieve my injuries after they had beaten me. They humiliated me with insults and other offenses, soaked me with cold water and put me to sleep on the floor of a dirty bathroom for a whole night. Finally, they forced me to appear in a video intended to recall the ``future history'' in which I denounced myself and stated all kinds of horrible things I supposedly had done to harm the ``security of the state.'' I was released only thanks to a national and international campaign that pressured the Government. However, my release was conditioned on my agreeing to give an official story to the media and police about my kidnapping. I was told to state that I had been kidnapped by criminals seeking a ransom. They said that unless I agreed to tell the official story, my family, which is still in Guatemala, would suffer the consequences. Every time I speak out publicly, with the real story behind my disappearance, I do it with hesitation about possible reprisals the Guatemalan Government may take on my family back home. During my detention, my captors explained the ``need'' of torture in Guatemala. One of them said to me, ``Do you believe, Doctor, that the President Cerezo himself doesn't have a security force that does all these things in order to maintain stability? What we do might be construed as illegal, but we do it precisely to control those who are outside the law.'' I wonder what would be of this country if you, as legislators, approved torture to ``control'' those who are opposed to your views. The evidence requires that the Guatemalan armed forces should be held accountable for the crimes committed against their own people. Nevertheless, now that the peace accords have been signed, they suggest that from now on there will be room only for reconciliation measures, and that Guatemalans should forget the past and look forward. I just attended a commendable effort made by the U.S. Government health authorities to improve the mental health workers' understanding on the terrible aftermath of the practice of torture. I really did not know the magnitude of the problem. I was shocked, it was shocking for me to know that there are more than 400,000 other survivors who have arrived in this country during the last two decades. Most of them have not even been recognized as refugees, and are not receiving any special kind of treatment for the trauma resulting from torture. After I arrived in the United States in 1990, I never thought about being treated for the post-traumatic stress disorder that I might have suffered for years. I had not even recognized the symptoms until I started to hear about PTSD. I entered the U.S. at New York City, and even if I had wanted to be treated, there was no available place I might have gone for treatment in 1990. I am a physician, I was a professor at the National University. I was accepted at two of your most prestigious universities. Although I studied public health and was connected to a good network of solidarity groups and human rights organizations, I never learned about a single mental health professional who I could consult for treatment. During these last four years and after talking about this issue before some selected and friendly audiences, I have found that speaking out about my story has been for me a sort of treatment to overcome a part of my presumed PTSD. After seven years of exile in the U.S., having obtained my refugee status, then my green card, and even a U.S. citizen child, I still feel so afraid to go back. I am still very uncertain about staying in the United States. I have made many friends and I am very grateful for the opportunities I have had so far. But the system in general has not been so good to me. For instance, when my child was born, I was a refugee, a single mother and I was unemployed. But it seemed then like the workers of the Department of Health and Human Services were rather blocking the process instead of helping us. How could I even think then about having treatment as a survivor of torture for my mental status. I hope you ladies and gentlemen can do something about the ones who have looked for and found shelter in your country. Think about them as if they were your relatives or friends escaping from oppressive regimes that the same United States has promoted around the world. Think that the United States has a moral obligation to all of them. The Center for Victims of Torture has asked me today to serve as a witness on behalf of other survivors who cannot come or do not wish to speak about this. The Center was established in Minneapolis, Minnesota, in 1985. It was the first comprehensive treatment center in the United States. It has treated well over 600 victims of foreign governmental torture who have come from all continents. Most of these existing centers have only been recently established. All operate on modest budgets, must rely on pro bono services of health care professionals. All can only serve a fraction of the victims in their area. The first national conference that I mentioned to you earlier was sponsored by three Federal agencies. It was clearly as success in sharing information of the field of care for survivors of torture, and in bringing together practitioners, research experts, and Federal officialsworking in the field. The Center for Victims of Torture makes these recommendations to the subcommittee, and asks that you consider including them in the report: that the National Institute of Mental Health increases its support for research into the methods of treating victims of torture, and such support could include an evaluation of the various treatments; that the Office of Refugee Resettlement allocate a minimum of $1 million in fiscal year 1998 to supporting treatment centers for victims or torture for care and training; that the Center for Mental Health Services increase its technical assistance and training programs for centers for victims of torture; and that the Centers for Disease Control present a plan for estimating the number, distribution and availability of care for the torture victim population in the United States. The Center suggests that the above agencies report on the implementation of these recommendations in their request for funding for fiscal year 1999. I appreciate having the opportunity to testify before you today, and would be grateful for your consideration of the Center's recommendation. I wish I would have had the fortune to be treated at the Center, and now I am very honored by them in allowing me to speak in their behalf. Thank you very much. [The prepared statement of Carmen Valenzuela, M.D., follows:] [Pages 524 - 531--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much for your very moving testimony. ---------- Wednesday, April 16, 1997. WITNESS J. ROUTT REIGART, M.D., CHILDREN'S ENVIRONMENTAL HEALTH NETWORK Mrs. Northup. Dr. Routt Reigart. Dr. Reigart is Chair and Board Director of the Children's Environmental Health Network. Since we have so many witnesses, let me just warn witnesses that I will tap on the microphone with 30 seconds warning just to sort of remind you to conclude your remarks. Dr. Reigart. Thank you, Mrs. Northup. Thank you for the opportunity to testify. My name is Routt Reigart. I am Chair of the Board of the Children's Environmental Health Network. I am a pediatrician from Charleston, South Carolina. The network is the only national, multidisciplinary, multicultural project whose sole mission is to promote a healthy environment for children and protect the fetus and the child from environmental hazards. The network's activities are concentrated in three areas: education, research and policy. I am here to speak about research, and I have a longer statement which I have submitted for the record. I will just try to hit some high points. The issue of protecting children from environmental hazard has generated a great deal of interest. In the fiscal year 1998 appropriations bill, this subcommittee has several opportunities to assure that the current interest in this topic results in genuine advances in our ability to protect the Nation's children and that our scarce Federal resourcesare used widely. Earlier this year, the network sponsored the first national research on children's environmental health issues. The findings of this conference provide a succinct summary of where we are and where we need to go. The 250 researchers, physicians and other experts at the conference demonstrated that there is much we do not know about the environmental hazards our children are exposed to, and the impact of these exposures. Specifically, we need more and better information on what substances children are exposed to, and the extent of their exposure. We do not know children's tolerances to various toxicants. Most available data has been developed by research on adults, not children. We need more epidemiologic and clinical studies, especially long term studies, of children relating to their exposure to environmental hazards and resulting outcomes. We need studies and discussion in the important field of ethics, particularly in the areas of genetics and biomarkers. We need to know more about the true costs of environmental diseases in children, which have been markedly underestimated to date. These underestimates have led to many flawed analyses of the benefits of preventing environmental illness in children. Some of the things we do know about children and environmental hazards, these are familiar, children are not just little adults. A child's metabolism, physiology, diet, exposure patterns and behavior are quite different from those of an adult. Current environmental policies and standards are set to protect healthy adults based on that research on adults, and thus do not take into account children's special needs and behavior. Children of certain racial or ethnic backgrounds and children living in poverty face a very disproportionate risk from environmental hazards. Given that we have so much to learn, it is heartening to see all the recent activity on this issue. The last Congress enacted an important piece of legislation which for the first time included specific language to assure that Federal policies and standards protect children from environmental risk. This was the Food Quality Protection Act. A number of Federal agencies, many in the jurisdiction of this committee, such as the National Institute of Environmental Health Sciences, the Agency for Toxic Substances and Disease Registry, have recently increased their focus on children's environmental health. The Department of Health and Human Services has set up a subcommittee on children's environmental health as part of its internal committee on children's health. The U.S. EPA, which I understand is not under this committee, last year announced the adoption of a national policy assuring that all standards set by EPA are appropriately protective to address environmental risks faced by children. The Children's Environmental Health Network is delighted at the increased interest in this vital issue. However, we are concerned that these commendable efforts are perhaps being undertaken without adequate communication and cooperation among the various Federal entities that fund children's research in environmental health. I am happy to say that at the research conference we just talked about, we got together representatives from key Federal agencies and specifically asked them to coordinate their efforts. In fact, we received a commitment from a high level administrator from EPA, the directors of the National Institute of Environmental Health Sciences, director of the National Institute of Child Health and Human Development, director of ATSDR, and the director of the National Center for Environmental Health at the CDC, and also the director of the National Cancer Institute. I have to say, they made the commitment, and we would like to keep them to it. The network sees two important opportunities for you as subcommittee members crafting the next appropriations bill. First, we hope that you can dedicate adequate resources for the much-needed basic research in data collection as necessary on this issue, understanding the tight fiscal constraints you're facing. Second, and just as important, we urge you to assure that the Federal agencies and offices working on this important issue coordinate and cooperate on their efforts, so that the Nation's resources are focused and leveraged to assure the most effective use of these resources. If you have any questions, I would be glad to answer them. [The prepared statement of J. Routt Reigart, M.D., follows:] [Pages 534 - 541--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. Our time is up, but I appreciate your testimony. ---------- Wednesday, April 16, 1997. WITNESS H. ALEXANDER ROBINSON, CITIES ADVOCATING EMERGENCY AIDS RELIEF COALITION Mrs. Northup. Next we have H. Alexander Robinson, the Administrator of Federal Affairs, regarding Cities Advocating Emergency AIDS relief. Welcome, Mr. Robinson. Mr. Robinson. Good morning. My name is H. Alexander Robinson. I want to thank you for allowing me the opportunity to speak with you this morning. I am the Administrator of Federal Affairs for Cities Advocating Emergency AIDS Relief, the CAEAR Coalition. I am also a person who has been living with HIV disease since 1983. The Ryan White CARE Act represents an important safety net for people living with HIV, like me, and like so many others in this Nation. I also want you to know that for five years, I served on the Metropolitan Washington HIV Health Services Planning Council, the Title I planning council for the District of Columbia metropolitan area, which includes parts of Maryland, Virginia and West Virginia. Title I planning councils are indeed an example of local decision making. I speak to you today as both an advocate and as a potential consumer of care services. My agency, the CAEAR coalition, is a privately funded coalition that represents Ryan White CARE Act planning councils, people living with HIV disease and AIDS, community based AIDS service organizations and CARE Act grantees. We are civic and business leaders, members of religious organizations, government representatives, local public health officials, people living with AIDS and our families. We have come together with a sense of urgency to advocate on behalf of the 49 cities and localities that are served by Title I of the Ryan White CARE Act. We are requesting $546 million in Title I funding for fiscal year 1998, a $96 million increase over fiscal year 1997 appropriations. Our request for a $96 million increase has three components. First, increased funding for viral load testing, increased funding for new primary care clients, and increased funding for the expanding primary care utilization. Despite our success in educating Americans about this epidemic, the CDC reports that AIDS continues to be the leading killer of all Americans between the ages of 25 and 44. The epidemic has grown, relentlessly spreading to new regions and new populations. Seven years ago, Title I provided assistance to 16 metropolitan areas. This year, 49 metropolitan areas received funding under Title I. These 49 communities represent 74 percent of all reported AIDS cases in the U.S. The CDC also reports the largest increase in AIDS has occurred among persons infected through heterosexual contact. There is also good news. Some of my friends have almost literally been snatched back from the grave. Like my friend who we will call John. John has been ill for a very long time. He is a sole proprietor of a small business and therefore had little health care coverage. After visiting a local Title I funded agency that provided case management, John was able to piece together a health care plan for himself. In and out of the hospital several times, he continued to work, always cheerfully, always with hopefulness that seemed unjustified by the evidence. Then about a year ago, we thought he had reached the end. None of the treatments seemed to work. His CD4 counts continued to fall. His health continued to deteriorate. He was unable to walk, often disoriented, incontinent, unable to care for himself in any meaningful way. Fast forward today, due to the use of combination drug therapies and protease inhibitors, John has regained much of his strength. His viral load is at undetectable levels, and he is planning for the future. If I know John, he is wondering how he can give something back to the community that has enabled him to make his recovery. John's story is not unusual. Like so many others, John's ability to avail himself of the new treatments was made possible because in the District of Columbia, Title I CARE funds have been used to provide case management services, quality primary health care, including the necessary diagnostic tests. These therapies, however, cannot be provided outside of the overall primary care. Madam Chair, we, and me, like so many other people with AIDS, want to live. We need to work. We need to stay healthy in order to care for our families. We appreciate this committee's support of increased funding for the CARE Act, and we ask that that continue. [The prepared statement of H. Alexander Robinson follows:] [Pages 544 - 551--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much for your testimony. ---------- Wednesday, April 16, 1997. WITNESS CHARLES N. QUIGLEY, CENTER FOR CIVIC EDUCATION Mrs. Northup. Again, we are going to change the order. The next speaker will be Charles N. Quigley, Executive Director for Civic Education, from the Center of Civic Education. Mr. Quigley. Thank you. I appreciate having the opportunity to address the committee. I am here to request your continued support for the civic education program, the international civic education program that are line itemed in the Department of Education's budget. I have submitted written testimony describing each program and its achievements. I thought it might be interesting, however, for you to know how these programs and other small programs in civic education that have received your support complement each other and together, have both a domestic and international impact far greater than might be expected. This impact is made possible by a national network of over 500 leading civic educators in the United States that assist in implementing both domestic and international programs. The network has been linked with a network of leading civic educators in emerging democracies in the former Soviet Union, Asia, Africa, Latin America, and in our most recent Balkan program, which currently includes the Federation of Bosnia and Herzegovina. Hopefully, it will soon include Republika Srpska, Croatia, and Serbia. You may be interested to know that assisted by these networks, the Center's national standards for civics and government have not only been well received in the United States and used widely, but they have been made available to every nation in the world by the USIA through its USIS offices; translated into Russian and distributed to 100,000 educators throughout Russia, where they are using them for the development of their own programs; translated into Chinese by the ministry of education in Taiwan and used throughout Taiwan; translated into Spanish and distributed throughout Latin America; translated into various other languages in the former Soviet Bloc nations and is currently being translated in Sarajevo to be used as the basis for a civic education program for all of Bosnia and Herzegovina. Interestingly, used by scholars in Australia for the development of national standards and civics and government in Australia. The curriculum materials that are part of this program, and this is one example, We the People, the Citizen and the Constitution, are used with millions of students throughout the United States. But because of this network, they are also being used in emerging democracies. For example, in Russia, the Russian Teachers Organization each week publishes one lesson from this book in American constitutionalism, and distributes it to 10,000 teachers who are using it in a pilot program with apparently good results. In Hungary, this program, which is a national competition, has been used as the basis for the first national competition on education for democracy. Finals will be held in Budapest, addressed by the President of Hungary and a special session held in Parliament. In Nicaragua, the program has been used throughout the schools, and the solutions to public policy problems that students come up with have actually been implemented by the Nicaraguan government. The Federation of Bosnia and Herzegovina, today there are over 1,000 teachers who have been trained who are using this program with over 12,000 students. On March 17th, there will be the first academic competition on democracy and constitutionalism in Sarajevo, with 24 classes, upper elementary and secondary classes, coming to Sarajevo, about 800 or 900 students. To return to the domestic program, this program was recently honored by Senate Majority Leader Trent Lott, and Tom Daschle and the Vice President and seven members of the Supreme Court, and 95 members of the 105th Congress at a special event held in the Supreme Court on December 3rd. I have mentioned only a few of the many achievements of the Center's programs that you have been supporting in civic education. The exchanges with other nations have involved teachers from the United states working cooperatively in training programs here and abroad with their peers in the nations I have mentioned. American educators have brought their knowledge and experiences home with them. They have enhanced their capacity to help American students appreciate their heritage of a system of ordered liberty, but also to develop a deeper understanding of it and increase capacity to participate competently and responsibly in our political system. This program has been funded, the domestic program, at $4.5 million for a number of years. We appreciate that level of support. But we would great appreciate an increase of $1 million to help us expand it at State and local levels. I appreciate your consideration of this request. I was just told, by the way, that the winning team from Kentucky this year, that will be here from the end of April, is from your Congressional district. [The prepared statement of Charles Quigley follows:] [Pages 554 - 566--The official Committee record contains additional material here.] Mrs. Northup. That is exactly right. I am delighted to have you here today. I am familiar with the program and know how much it means to those students. Thank you very much. Mr. Quigley. We did not rig it. [Laughter.] ---------- Wednesday, April 16, 1997. WITNESS HENRY R. MAROCKIE, COUNCIL OF CHIEF STATE SCHOOL OFFICERS Mrs. Northup. The next speaker is Dr. Henry Marockie, the State Superintendent of Schools in the West Virginia Department of Education. Welcome. Mr. Marockie. Madam Chair, thank you very much for the opportunity to be before you and represent the State Superintendents and Commissioner from around the country, on behalf of the 1998 appropriations. At the outset, let me thank you sincerely for all the work that was done last year in bringing together the agreement with the Senate to fulfill the funds that were necessary. We would really encourage you to look at the funding for 1998 in the same way in which it was viewed last year, that is, an increase in the appropriation of about $4 million, because of the simple fact that across the country, we are receiving information about rapidly increasing enrollments, the need for preparation of hundreds of thousands of teachers who are going to provide the education for those young people, and the advent of learning technologies in the classroom, something that is unique, never had it before, except for in the last couple of years. I might add a personal note there, in West Virginia, we have been moving in that direction for the past eight years. Some 20,000 computers now are in the classrooms across the State in the elementary schools, and about 15,000 teachers who have had the need for training. I can assure you that it works. The test scores indicate dramatic increases for not only regular children but for at-risk students. The last fourth grade NAEP scores revealed that the minority students in West Virginia are the highest achieving minority students in the country. The improvements made in the fourth grade reading scores, with two other States, are the most improved States in the country in terms of basic skills. So the advent of the new initiative of technology has dramatic impact across the country in terms of what it can do. The third year of the elementary-secondary program for the Federal level we believe is dramatically working. Test scores across the country are improving in NAEP, and we encourage you to continue with that participation. You have provided the initiative in three major programs: America's Schools Act, Goals 2000 Act and Schools-to-Work that allow not only those initiative, but you allow us to link those with State initiatives and State monies to make major impact. One of those we now have waivers, there are 12 States in the country who have made the commitment to the Department of Education who can now literally waive Federal requirements and State requirements in their own States in order to make the horizons better, the horizons bigger for young people all across those areas. I can share with you that most of the States in the country have adopted voluntary standards. They are all higher than where we used to be. They are ratcheting up the standards. And that is applying to not only regular youngsters, but for at- risk youngsters. There is increasing information now that youngsters who are at risk are achieving at higher levels than they ever have before. A lot of that is because of the provisions that you have provided in Goals 2000 where we have been able to even cross district lines in order to make programs better. In terms of Title VI, where you have allowed us the initiatives to be able to be more flexible in how we operate across the schools, the Title III program for professional development, probably the most profound of all in the area of technology, because they are so dramatically linked together if we are really going to make an impact across the country. In West Virginia, that has been one of the saviors. The biggest one, however, Chapter I of the Elementary- Secondary Education Act, we have been able to link that to the technology program. That is why we are convinced that we have made such a dramatic improvement in the reading level achievement of fourth graders, because we have been able to focus that on the at-risk youngsters of Chapter I. In summary, let me say that the adequate increases are more in line with the increases of last year. We seriously would ask you to look at the Individuals with Disabilities Act, the Perkins Vocational Act, what is happening with high schools at work programs, schools-to-work programs, building partnerships with the business communities is making major differences in the lives of young people. We have numerous examples in the State of West Virginia of, once they get involved in that, they made dramatic increases in their academic performance. So in summary, let me say that while many experiments are going on across the country, charters, vouchers and so forth, the Federal initiative is making large scale improvements all across the country, and we commend you for that, and encourage your continued participation in that area. [The prepared statement of Henry Marockie follows:] [Pages 569 - 577--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. Mr. Marockie. Thank you. ---------- Wednesday, April 16, 1997. WITNESS HARRIS L. COULTER, EMPIRICAL THERAPIES, INC. Mrs. Northup. Next I would like to ask Dr. Harris Coulter, President of Empirical Therapies, Inc., to make his presentation. Good morning, Dr. Coulter. Mr. Coulter. Good morning. Thank you very much for inviting me to speak here. I am a little bit at a loss, because I have been given five minutes to address a $100 billion issue in the American medical economy. It is impossible to be convincing on a subject as large as that in five minutes. What I will try to do is get you curious to read my written testimony, perhaps. You will be encouraged by the fact that I am not asking you for any money. My name is Harris Coulter, I am the author of a book called DPT: A Shot In the Dark, co-authored with Barbara Lowe Fisher. This book was published in 1985. It marked the beginning of a general awareness in this country of the dangers of the childhood vaccination programs. Namely, that these programs have a dark side, in the sense that many children suffer from vaccines, that was basically swept under the rug prior to the time our book appeared. Just how large the extent of this damage is is still a matter of dispute. The Congress adopted a compensation program in 1986, mainly as a result of the outcry provoked by our book. To date, this compensation program has paid out just under $1 billion, $1 billion, in compensation to the families of children who have been vaccine damaged. Since the Federal Government and its various health agencies promote these vaccination programs very vigorously, they are not exactly falling all over themselves to criticize these same programs which they promote. For that reason, we do not know yet what the full extent of the damage from vaccination programs is. What I want to suggest to you today is that diabetes is part of the whole spectrum of vaccine damage, specifically Type I diabetes, the insulin-dependent type diabetes, which typically affects children at a very early age and up into adolescence. There are about 13 million diabetics in the United States, up from 600,000 in 1946, for reasons which no one can understand. The population of the country has doubled since the 1940s, but the number of cases of diabetes has gone up 20 times. The bill for treating these 13 million diabetics is over $100 billion, I say billion, and every year. Type I diabetes constitutes 15 percent of these cases. Since their treatment is more expensive than the treatment of Type II diabetes, which typically affects adults later in life, the total bill for treating Type I diabetes in this country is about $30 billion a year. Much of this is paid by the Federal Government in the form of Medicaid, Medicare. Diabetics on Social Security, diabetics who have had to retire prematurely and are disabled. Therefore, I think the Appropriations Committee should be interested in this matter. I would like to give you two interesting statistics. One, diabetes is a particularly serious disease among the American black population. The death rate for diabetes among American blacks is two to three times as great as it is for American whites. Statistic number two. The incidence of diabetes in the Armed Forces of the United States is enormously higher than it is in the population at large. The disparity between blacks and whites in the Armed Services is as great or greater than it is in the population at large. That is to say, the incidence of Type I diabetes in the population, among black and white service men and service women, is six times as high as it is for the population at large. This becomes worse as the service men and women grow older. In the age range 30 to 39 years, the incidence for white men and women is eight times higher than the population at large, whereas the incidence for black men and women is a stupefying 22 times higher than for the population at large. This is an extraordinary statistic. We are talking about people who volunteer for the Armed Forces and are thereby presumably entire healthy and diabetes free. Because they would not be accepted as volunteers if they had diabetes. Yet after a few years in the Armed Forces, you see these enormously high incidence of diabetes. We feel that the reason for this is the enormous number of vaccinations which soldiers, sailors and airmen get in the United States. Mrs. Northup. I am going to need you to summarize. Mr. Coulter. Yes, indeed. I realize, as I said, it is impossible to deal with this adequately in five minutes. Let me just say that I have in my written testimony suggested five or six action items which could be pursued. One would be to do epidemiological study of the soldiers, sailors and airmen who have diabetes and have acquired it in the Armed Services. They are there, they are an easy population to reach. We could easily find something more about diabetes from doing that type of research. Thank you very much. I appreciate the opportunity to speak here. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness] [The prepared statement of Harris L. Coulter follows:] [Pages 580 - 584--The official Committee record contains additional material here.] Mrs. Northup. Thank you. Now, Representative Payne, I think you are going to make our next introduction. Welcome to this subcommittee this morning. ---------- Wednesday, April 16, 1997. WITNESS ALICE BARNETT, CITY OF NEWARK, NJ Mr. Payne. Thank you very much. On behalf of our City of Newark, prior to coming to the United States Congress, I served on the municipal council of the City of Newark, and therefore became very involved, as you might expect, in the affairs of the City. It is certainly a special honor for me to introduce Ms. Alice Barnett, who is the Director of Newark's Department of Health and Human Services. Ms. Barnett is here to speak today about one of our most critical needs in the City and one of our top priorities, the epidemic in teenage pregnancy and the attempt to have teenage pregnancy prevention and also low birth weight babies projects. Unfortunately, Newark ranks among the highest cities in the country in teenage pregnancy. Low birth weight babies and infant mortality is also very high, just as in other urban areas. We also have a high rate of HIV and AIDS, TB and substance abuse among teenagers. So this project could be a bright future for Newark's young people. Ms. Barnett has done an outstanding job in just the year or so that she has taken over the directorship of the health department. We are very pleased with what she has been able to accomplish, and we would appreciate anything the committee would be able to do. Mrs. Northup. Welcome, Ms. Barnett. You have five minutes. I will try to give you a 30 second warning. Ms. Barnett. Thank you very much. Good morning, Madam Chair. On behalf of the City of Newark, New Jersey, I appreciate the opportunity to appear before you today. As Congressman Payne has indicated, my name is Alice Barnett. I am the Director of the Newark Department of Health and Human Services. I am here today to urge your support for a very important initiative to reduce teen pregnancy and to provide a comprehensive prevention, intervention and case management program to reduce infant mortality and low birth weight babies. The City of Newark, like many urban areas across the country, is facing a host of extraordinary public health challenges. We are unique, however, in that our high rates of teen pregnancy and infant mortality are matched by corresponding increases in the incidence of HIV and AIDS, tuberculosis and substance abuse among our adolescents. I am respectfully requesting your assistance with the ever- escalating rate of teenage pregnancy in an already seriously at-risk and compromised adolescent population. The City of Newark has already implemented, without Federal resources, a comprehensive prenatal program. We have also implemented through various maternal and child health consortia several programs to promote early prenatal care for adolescents. We know, however, that the complex issue of adolescent pregnancies and adolescent sexuality requires a far greater innovative response. We need to and we must provide sex education information while we are promoting abstinence for girls and boys. We must urge the reinforcement of this message by every adult, every parent, every school health education program and class, every child protection agency, every church and mosque, every athletic and social service agency, and each volunteer and mentor in our city. Our task requires a city-wide united effort. We must capture the imagination of our young children and redirect their energies and their focus. Teaching abstinence is useless if it is directed only at the few who are readily willing to hear the message. Many of our teens are already sexually active. Many are already involved with drugs. Many are already infected with HIV. We must encourage abstinence through a very urban, cutting edge, uniquely Newark program that permits young men and women to reinvent themselves, to put on the armor that permits you at 16 to refrain from sexual activity and still be the 1990s version of cool. We must encourage our teens to adopt a new and healthy lifestyle and outlook, a bright futures outlook. Through this new initiative, we must reach out to the adolescent most at risk, the homeless, the abused, and the adolescent involved with the juvenile justice systems and the alternative school system. We realize that such initiatives are not new or unique. What is unique is the level of commitment from this city and its core health education and social service providers. We have always had the support of our maternal and child health consortia. For this effort, however, we have secured the support of the institutional and community based agencies that convened for our empowerment zone application planning process. Our proposal in fact seeks to empower the adolescent to refrain from early sexual activity and learn the public posture that enables continued abstinence through adolescence to marriage. We seek also to create an atmosphere of trust for our adolescents. Pregnant teenagers must learn that caring, responsive adults must be immediately informed of unintentional pregnancies. This would then facilitate the early first trimester entry of adolescents into a prenatal care system, the critical entry point for good birth outcomes. The city has already secured the support of a host of local partners, including the Newark Division of Health, the Newark Public Schools, AD House, the Division of Public Welfare and a major hospital in our area. We are asking you to consider discretionary assistance so that we may focusespecially on this initiative to reduce teen pregnancy by promoting abstinence as the preferred choice of Newark teenagers, and for pregnancies that do occur, with their corresponding poor infant outcomes because of delayed prenatal care, a comprehensive program consisting of the early identification of at-risk adolescents, education and case management. Accordingly, I would ask you to consider supporting this worthy initiative with $900,000 in discretionary assistance to help us give Newark's teenagers and its infants a healthier start. Thank you very much. It was a pleasure to be before you today. We urge you to provide the funding needed to undertake the demonstration effort we have outlined, and give Newark adolescents a brighter future. Thank you. [The prepared statement of Alice Barnett follows:] [Pages 588 - 590--The official Committee record contains additional material here.] Mrs. Northup. Thank you. Best wishes for every success. ---------- Wednesday, April 16, 1997. WITNESS SYLVIA P. FERNANDEZ, HEALTH PROFESSIONS AND NURSING EDUCATION COALITION Mrs. Northup. We have held off with the next presentation, because my colleague, Representative Bonilla, very much wanted to be here to greet our presenter and to introduce them. That is not going to be possible. He has been held up. He has asked me to welcome you today. Next, we have Dr. Sylvia Fernandez, she is the Director of the Office of Special Programs at the University of Texas Health Science Center. Welcome, and I am sorry that it could not have been Representative Bonilla to greet you today. Ms. Fernandez. I understand. Thank you, Madam Chair. I am Sylvia Fernandez, and I am Director of the Office of Special Programs at the University of Texas Health Science Center in San Antonio. I am here on behalf of the Health Professions and Nursing Education Coalition, which is an informal alliance of over 40 national organizations dedicated to educating health professionals. HPNEC works to ensure continued support for the health professions and nursing education programs that are authorized under the Title VII and Title VIII of the Public Health Service Act. HPNEC members believe that these programs are critical to our Nation's efforts to provide health services to underserved communities. The members of HPNEC thank the subcommittee for restoring funding for these programs in 1997. In particular HPNEC thanks Representative Bonilla for his leadership and support of these programs. The members of HPNEC are extremely concerned that if the Administration's budget is enacted, this Nation will not have the sufficient health professionals and nurses to meet future public health and primary care needs. The Administration is now proposing the virtual elimination of critically important programs in primary care and nursing education, and a more than 50 percent reduction in funding for programs that assist rural or inner-city underserved communities. HPNEC urges Congress to reject the Administration's efforts to cut the funding of these programs and we recommend the appropriation of $302 million for Title VII and VIII in 1998. Why is this important? Because the list of students who have benefitted from these programs is extensive. Let me just share two examples of how some of these programs have enabled students to make a difference. It has made a difference not only in the lives of our students, but of those that are receiving the health care from the professionals they are training. Concepcion Martinez is a first year medical student who credits the Hispanic Center of Excellence for giving her that much needed jump start through the Summer MCAT program that enabled her to get into medical school. On the other end of the spectrum, there is a Dr. Alfredo Lopez who is about toset up a practice in his own hometown of McAllen, Texas, where he is completing his training at the Family Practice Clinic. He now serves as that important mentor and role model for our students. There are stories like these in all of our schools, the dental, nursing, allied health, graduate school of biomedical sciences, and nursing school. The key word for us is access. These programs provide students with access to educational opportunities, access to role models and mentors who have made it through the educational pipeline and access to career paths that allow health professionals to work in underserved areas. As we at the Health Science Center greet students who have made it through that pipeline, we are also reaching out to thousands of middle and high school students who are making those critical decisions about their future. We use our students and our residents to motivate and to plant the seeds for these students. Many of our students are not only the first generation to attend college; in many cases they are the first generation to even finish high school. These programs have now opened doors for our students by giving them exposure to scientists and to health professionals. Ladies and gentlemen, my point is that the two most important words here are access and equity. Without adequate funding for these programs, minority and disadvantaged students would not have access to a health professions education. These programs provide many of our students that necessary connection to the resources that give them the jump start into the health profession. Equity denotes fairness and an even playing field, which many of our students have not had. It is my privilege to work in an institution where we see the impact of programs that have touched the lives of students who are our future health care providers and who will have a responsibility of providing access and equity to the future. In closing, Title VII and VIII programs meet the Nation's need for an expanded supply of primary health care providers and public health professionals. The drastic cuts in professional education puts the public health at risk. In this rapidly changing health care environment, it is crucial that these programs receive an appropriation of at least $302 million for 1998 to meet their mission. The members of HPNEC appreciate the opportunity to comment on these programs, and we look forward to working with the subcommittee in support of them. And I thank you for the opportunity to be here. I am really sorry that I missed Representative Bonilla, but it is nice being here. [The prepared statement of Sylvia Fernandez follows:] [Pages 593 - 599--The official Committee record contains additional material here.] Mrs. Northup. Thank you. We appreciated your testimony. That concludes this morning's testimony before this committee. We will recess until 2:00 o'clock. Thank you very much. ---------- Wednesday, April 16, 1997. WITNESS ARNOLD MITCHEM, NATIONAL COUNCIL OF EDUCATIONAL OPPORTUNITY ASSOCIATIONS Mr. Bonilla [assuming chair]. The subcommittee will come to order. My name is Henry Bonilla. I represent South and West Texas. Mr. Miller, of Florida, was going to be substituting for Chairman Porter during this hearing, who is actually injured. Mr. Miller is on his way and will be filling in as soon as he arrives. But I figured I would go ahead and get started. I would like to offer a special welcome to our first witness today, Doctor Arnold Mitchem. We know him as Mitch. I have gotten to know Mr. Mitchem over the years because of the great work he does on educational programs, specifically the TRIO program which is a very, very important program that allows young people from economically depressed areas, families in some cases where there has not been anyone allowed the privilege to seek higher education before, it allows them the opportunity to do that through the programs. It really produces good results in the communities. I just want to express my gratitude for all the work you have done on TRIO. We have worked hand-in-hand on this project for several years now. I want to give you a special welcome today, and we are anxious to hear your testimony. Mr. Mitchem. Thank you very, very much, Mr. Bonilla. It is a real pleasure to be here this afternoon and to have you in the chair, sir. I want to thank you and the other members of the subcommittee not only for supporting a real increase for TRIO in fiscal year 1997, but also for defending that increase in fiscal year 1997 against attempts in the Senate to take away what you all had worked so hard to provide for the TRIO programs. This afternoon I want to make three brief points. First of all, we are proposing a 25 percent increase in TRIO. That would move the appropriation from $500 million to $625 million. We estimate that an additional 186,000 low-income youth and adults would be served by the programs if, indeed, we could reach that figure. By the way, just to give you a baseline in terms of who is currently served by TRIO, currently TRIO is serving 700,000 low-income youth and adults, 39 percent of those individuals are white, 36 percent are black, 16 percent are Hispanic, 5 percent are Native American, and 4 percent are Asian, and roughly about 20,000 of these individuals are disabled. We feel by realizing this sort of increase, based on our estimates, we would increase the number of eligible to roughly about 8 percent. We are below 8 percent now. The reason we are being so aggressively, frankly, is because the TRIO programs work. In 1990, President Bush used this committee to request funds to do an evaluation of the TRIO programs to find out exactly whether or not they were making a difference in our society. Much or most of thoseresults are now in. While many of us, including myself, believed for a long time that these programs worked based on a lot of anecdotal evidence as well as a lot of monographic evidence in some very fine institutions around this country, like the University of Maryland, Hope College in Michigan, Marquette University in Milwaukee, and other places, we now have a more broad-based scientific basis for our optimism and confidence in these programs. Let me just very briefly share with you some of the findings that have been made available to the public. First of all, in the case of student support services, they have found that this particular program has had a positive and statistically significant effect on three separate student outcomes in terms of grades, in terms of credits earned, and in terms of college retention, all of which we feel is very significant. Equally important, the studies have also noted that the effects of this treatment, the student support services program, goes beyond the first year that these effects persist. That is, they help the individuals attain the baccalaureate degree which is so critical in terms of low-income youngsters. You may refer to the chart on the last page of my testimony that shows the differentials among income groups in terms of who earns a baccalaureate degree and who does not. More importantly, these findings reinforce other findings of studies that were done in an earlier period. For example, we knew back in the late 1980s that the student support services programs made a difference in the first year in terms of persistence and completion. Now we know that they make a difference beyond that. Now let me turn to Upward Bound. Let me just summarize some of the findings of that study that was done by Mathematica. This was a study again commissioned by the Department of Education. There, they found that Upward Bound has early positive impacts on students' educational expectations and academic course takings. It found that Upward Bound also has a positive impact on parents' educational expectations for their children, which I think is a very key and important finding because the attitudes of the parents, the sentiments of the parents make a difference in terms of the motivation of the students. They also found that Upward Bound increased the number of credits students earned during their first year of high school, again which we think is significant. Also, they made the point that the Upward Bound programs in this country are providing a rich and challenging academic program and that is the central focus of most Upward Bound projects. I think that point is so important and I just want to read to you very briefly a paragraph from the study titled ``Nature and Content of Courses.'' They found that more than two-thirds of the Upward Bound projects focus on instruction that is not remedial. I think that is a key finding--that is not remedial. These projects either support the curricular content in the college preparatory program or the high school, or they adopt an enrichment focus that teaches content the schools are unlikely to teach because of lack of resources, either human or fiscal. This is very important in rural areas, as you well know. Most projects offer courses that reflect the traditional pre-college preparatory curriculum and a wide range of subjects. I that indeed speaks for itself. My final point is this. It seems to us that this is the year that we need to seize this opportunity. The Department of Education is conducting two competitions this fall; one in talent search, the other in educational opportunity centers. Whatever dollars, particularly the additive dollars, if indeed we get an increase, will indeed go directly into that competition in talent search and educational opportunity centers. Talent search is such a key program because it reaches further down the educational pipeline than any of the other TRIO programs. It goes down and works with youngsters in the sixth, seventh, and eighth grades, 11, 12, and 13 year-olds, as well as those in high school, as well as dropouts. Mr. Bonilla. Mr. Mitchem, if you could kind of wrap things up because we have a lot of people to testify today. I apologize. Mr. Mitchem. I understand, sir. Basically, my point is that with talent search we can get to youngsters and provide them the pre-collegiate base so indeed they can graduate from college. In the case of EOCs, we can use those programs to help us in terms of welfare people in trying to move them back into the workforce. I apologize for going too far, being too enthusiastic. Thank you for your patience, sir. It is a privilege to be here. [The prepared statement of Arnold Mitchem follows:] [Pages 603 - 612--The official Committee record contains additional material here.] Mr. Miller [assuming chair]. Thank you for your testimony. Since we only have a short amount of time, I apologize to you because we could talk about this for a lot longer time. Mr. Bonilla, do you have a comment or question? Mr. Bonilla. Just a comment, Mr. Chairman. Just in closing, Doctor Mitchem, we would like to again thank you for being here. A lot of us on both sides of the political spectrum here recognize the importance of TRIO. We are going to do everything we can to continue helping that educational program and the others that you are working with as well. Mr. Mitchem. Thank you very much. We certainly know that and this subcommittee has demonstrated that and we appreciate it. Thank you, sir. Mr. Bonilla. Thank you, Chairman. Mr. Miller. Thank you. ---------- Wednesday, April 16, 1997. WITNESS DANIEL V. YAGER, LABOR POLICY ASSOCIATION Mr. Miller. Next, we have Mr. Daniel Yager, General Counsel for the Labor Policy Association. I apologize for arriving late and I thank you, Mr. Bonilla, for starting. I do not know if you made the announcement, but Mr. Porter has some back problems and is not able to be here today. So let us proceed with Mr. Yager. Mr. Yager. Thank you very much, Congressman. My name is Dan Yager, and I am Vice President and General Counsel of the Labor Policy Association. I will try to stay well under my five minutes in view of the long list of witnesses you have got today. Mr. Miller. Thank you. We would appreciate that. Mr. Yager. I want to start by commending the subcommittee for paying extremely close attention to the actions and policies of the National Labor Relations Board in recent years. This is an agency that I think has really become kind of a rogue agency. I think that is largely because it has not gotten a lot of public and political attention. I think that this subcommittee and the authorizing committee have done a very good job of giving it the attention that it deserves. I know that there has been a lot said, and I know that you are very much aware of the problems with fairness, the lack of fairness at the Board. We documented that in a book that I wrote, ``The NLRB: An Agency in Crisis,'' which I believe I have provided to you in advance. So I will not go into all the substantive problems at the Board because I know a lot of that are issues that really can only be address in the authorizing committee. I think an issue that you all should consider as you take a look at the 6.7 percent increase that the agency has asked for is a very serious problem at the Board that I think is at the base of a lot of the substantive problems, which is a total breakdown in the nomination process. This is a breakdown that is not just a recent occurrence; it goes back to 1980. I have attached a chart to my testimony that shows that over the last 16 or 17 years it has been a very, very rare occasion that the Board has been completely staffed by members who were confirmed by the United States Senate. That is not the way it is supposed to work. Look at the situation right now. It is about as bad as it has ever gotten. We have a five-member Board, we have only one member who has been confirmed by the Senate, and that is Chairman Gould. There are two other members who were recess appointees, and there are two vacancies. If nothing happens by the end of the fiscal year, the funding that you are considering, the Board would be totally staffed by recess appointees because Mr. Gould's term expires at the end of next year. I think that this is an intolerable situation. I am not going to say that management does not share part of the blame for that. I think it has been extremely contentious over the last 16 years. Management has spent all its energy trying to fight labor's nominations, and vice versa. As a result, I think the political folks have sort of walked away from the situation because there's not a heck of a lot of mileage in it for them to get involved in those kinds of dogfights. I think that if this situation is allowed to continue and fester, the situation at the Board will only get worse. I think one of the things that you all ought to think about is whether or not there is not some way through the appropriations process that you can force a solution to this problem by somehow tieing the funding of the Board to whether or not it is either fully staffed or primarily staffed by folks who are there under the procedures that are supposed to be followed in filling the Board. I do also want to add that we are extremely supportive of the language barring the use of funds for the single facility regulations. I know you are familiar with those, so I would not spend any time on that. I do have one other issue I would like to discuss, which is the Department of Labor's procedures for ensuring financial accountability of unions. Under the LMRDA, unions are supposed to file an annual financial form which is called an LM-2 form. These are supposed to be readily available to their members, to the public, and they are supposed to ensure the accountability of the unions to spending the hard earned dues of their members. I will tell you, Congressman, if you were to go over there and try to get an LM-2 form on a union, you would find the somewhat complicated Rube Goldberg procedures that one has to go through to obtain access to these forms. I describe those procedures in the testimony. They keep on file some 34,000 files; you can only go in and get about 5 at a time, and you have to know exactly what number to give them. To get that number, you have got to go to a book which is not updated. So chances are you may never get the information you would like to get on that particular union. In contrast, under the Securities and Exchange Act, publicly owned companies are supposed to file 10(k)s that provide all kinds of financial information about the company. That is readily available to the public with the Securities and Exchange Commission, and it is also available to the public on the Internet. I would suggest, I know that times are rather lean right now, but I would suggest that there may be some value, given the concern of this Congress, to the financial accountability of labor and how they are spending that dues money. There may be some value to directing the Department of Labor thatsome of their funding be used to putting this information on-line and making it available to the public. It is not now computerized; it is just a big stack of files. That is extremely difficult to obtain access to. Those are our concerns. I appreciate the opportunity to appear before you today. [The prepared statement of Daniel Yager follows:] [Pages 616 - 629--The official Committee record contains additional material here.] Mr. Miller. Thank you very much for appearing today. When I first joined this committee I was kind of amazed that the NLRB has over $180 million budget. When you consider biomedical research for cancer, arthritis, or what have you, and then you see they are getting $180 million, I said wait a minute, where is our priorities. So I appreciate your testimony and your information. Thank you very much. Mr. Yager. Thank you. ---------- Wednesday, April 16, 1997. WITNESS MARY STECHER, NATIONAL MENTAL HEALTH ASSOCIATION Mr. Miller. Our next witness is Mary Stecher. Welcome. Ms. Stecher. Good afternoon, Congressman Miller. My name is Mary Stecher. I am the Executive Director of Community Family Service and Mental Health Center. It is the lead agency and fiscal agent for the Community Wraparound Initiative, a children's mental health demonstration project in Southwest Cook County, Illinois. Thank you for the opportunity to testify about the importance of children's mental health and this initiative. The Community Wraparound Initiative is funded by the Federal Center for Mental Health Services and targets three socioeconomically diverse townships encompassing 24 school districts in the Chicago suburbs. We serve children between the ages of 3 and 21 years of age who are either returning to their families from out of home placements, like residential centers and psychiatric hospitals, or those who are at imminent risk of such placement. Before I begin my substantive remarks, I would like to take a moment to thank both Chairman Porter and Congressman Obey. Over the years, both of them have demonstrated courageous and unprecedented support for children and youths struggling with severe emotional disturbances. Their leadership is making a real difference for people with mental disorders and their families. Ten million children have a mental disorder that interferes with their development, and another 2,500,000 are seriously threatened by an emotional disorder. Only a fraction of these individuals actually receive any care whatsoever. During the last five years, the suicide rate for 10 to 14 year-olds in the United States increased by 25 percent. It is the third leading cause of death for adolescents and young adults age 15 to 24. Just five years ago, the children's mental health service programs began under the leadership of Chairman Obey. Grants are awarded in a competitive process. There are currently 29 sites in 18 States with operational programs. Unfortunately, CMHS is now able to fund only six to eight new initiatives from the forty-two applications filed this fiscal year, a funding rate of roughly 16 percent. Funding for these initiatives is combined with local and State matching dollars to achieve local responsibility which sustains the programs after the Federal dollars sunset. Data from our colleagues in Education indicates that the community- based approach is successful in maintaining in school placements. Behavior, attendance, and academic performance improves. The number of days spent out of home over a 12 month period has reduced the average hospital stay from 17 days to 6, resulting in an estimated savings of $4,400 per child. I would like to share what this community-based approachcan look like for a child--Annie. Annie's parents divorced when she was three. For several years she was shuffled between parents and other relatives. At age ten she was sent to live with her father in Iowa following a child neglect charge brought against her mother. She became a chronic runaway. She was arrested several times for stealing, was on probation, failing in school, had major depression, and frequent thoughts of suicide. Following her second hospitalization, her father petitioned the court for foster placement. Between the ages of 12 and 15, she was in 8 foster care and/or group care facilities. Child welfare wished to return Annie to her father. When Annie's father sought help from Community Family Service, they were linked to the Wraparound Initiative. Through thoughtful meetings that brought together the child welfare worker, probation officer, school personnel, and family members a plan developed that allowed Annie to live with her paternal grandmother who had always maintained a strong connection with Annie. The Wraparound plan stretched the conventional boundaries of child welfare and juvenile justice. An agreement was forged with Annie that required not only regular school attendance and strict rules of behavior, but it also required intense collaboration from every entity providing service. Annie began individual counselling and a remedial program that involved some special education services, but she was included in mainstream classes at a neighborhood school. Cost for out of home placement for Annie's years of foster care were approximately $112,000. This excludes staff time from social services and juvenile justice. The cost of the Wraparound plan for 18 months have been $4,500. Annie will graduate this spring, has been accepted at a local junior college, and has maintained a job for six months. The projects funded through the Center for Mental Health Services are not only lifelines for those it serves, but are also demonstrating and guiding how human services must organize themselves and work in collaboration with each other. In order to implement these new directions more broadly, additional public leadership and public-private partnerships are needed. Continued funding is critical to ensure that children with severe emotional disorders and their families stop being under- identified and under-served. I must say it is an honor as a citizen to appear before this committee, and an honor as a professional to have a stewardship role in this challenging endeavor. Thank you for allowing me to testify on behalf of the Community Wraparound Initiative. I will be happy to answer any questions you might have for me. [The prepared statement of Mary Stecher follows:] [Pages 632 - 638--The official Committee record contains additional material here.] Mr. Miller. Are you with the program in Cook County? Ms. Stecher. Yes. Mr. Miller. Is this a demonstration project, or does this go on and on and on? Is there a limited term to these programs? Ms. Stecher. Indeed, it is a demonstration project that has been funded for five years. From the very beginning, the outcome of the project has been to incorporate different ways within existing organizations so that when the projects are over, the new learning and the seeding opportunities in the community will take place. Mr. Miller. Then the community will take it over. Ms. Stecher. Exactly. Mr. Miller. Great. Thank you very much for coming today. Ms. Stecher. Thank you. ---------- Wednesday, April 16, 1997. WITNESS RUSSELL J. HAGEN, NATIONAL COALITION OF STATE ALCOHOL AND DRUG TREATMENT AND PREVENTION ASSOCIATIONS, AND THE LEGAL ACTION CENTER Mr. Miller. Next, Mr. Russell Hagen, President and CEO of Chestnut Health Systems. Welcome. Mr. Hagen. Thank you. Good afternoon, Mr. Chairman and members of the subcommittee. My name is Russell J. Hagen. I am the Chief Executive Officer of Chestnut Health Systems, a comprehensive alcohol and drug treatment and prevention provider with facilities in various parts of Illinois, with corporate offices in Bloomington. Thank you for the opportunity to testify in support of increased fiscal year 1998 funding for alcohol and drug treatment and prevention programs in the Department of Health and Human Services and Education. I am representing today the National Coalition of State Alcohol and Drug Treatment and Prevention Associations, which is composed of 34 State-based associations of treatment and prevention providers in 30 States, and the Legal Action Center, a not-for-profit law and policy organization focusing on alcohol, drug, and AIDS issues. Through Federal and other funds, these programs represented by these associations provide services to families with parents who are addicted, pregnant women with alcohol and drug problems who want a better future for their children, and addicted individuals in the criminal justice system who want to start a new life. Thank you, Mr. Chairman and members of the committee, forlast year's increase in alcohol and drug treatment, prevention and research programs. Providing strong support for alcohol and drug treatment and prevention, education, and research is imperative to maintaining and improving the health and the well-being of our Nation. These programs effectively decrease alcohol and drug use, crime, health care costs, AIDS, and welfare dependence. Let me begin by telling you about alcohol and drug treatment and prevention needs and resources in Illinois. Illinois is a microcosm of this Nation. Illinois communities span the continuum from the most densely populated urban areas to the most sparsely populated rural areas. Regardless of their size and demographics, all of these communities have alcoholism and drug dependence in common. The Illinois Department of Alcoholism and Substance Abuse, DASA, estimates that each year 700,000 adults and 138,000 adolescents are in need of treatment in the State of Illinois. We estimate that our current treatment capacity is about 130,000. This unmet need is very real to the individuals and the families who are attempting to gain access to appropriate treatment in a timely manner, and it is certainly very real to those of us who provide that treatment and ask them to wait weeks and sometimes months for their turn. In the face of this overwhelming need for treatment and prevention services, inadequate resources, Illinois providers and our counterparts across the Nation work diligently to do the best we can within our current funding limits. I am aware of this committee's keen interest in scientific research documenting the effectiveness of treatment and prevention. I am privileged to lead an organization that is committed to this type of research. We are currently engaged in a foundation-funded longitudinal outcomes research study with another provider, Interventions, that will evaluate the effectiveness of 30 different treatment programs across our two organizations. A recent evaluation of DASA-funded programs in Illinois found remarkable success in focused populations including subgroups of women, homeless, individuals with dual diagnosis of mental illness. For example, fifth to eighth graders participating in the Logan Square Prevention Program in Chicago decreased their gang membership by 17 percent, weapon carrying by 32 percent, involvement in drug selling by 22 percent. Mr. Chairman, I will ask that copies of this study be included in the record. I am pleased to tell you that Illinois providers are in the forefront of developing innovative, outcome oriented studies that clearly and decisively indicate that treatment and prevention work. When I say that treatment and prevention work, I mean from the day an individual enters treatment and the first time an individual says no to alcohol and drugs, there are savings in both lives and dollars. The following are our recommendations. To provide these essential services in Illinois and throughout the Nation we need your support. We urge Congress to adopt the following increases in fiscal year 1998 funding for alcohol and drug prevention, treatment, and research programs in the Substance Abuse, Mental Health Services Administration, Department of Education, and National Institutes of Health which are a wise investment and will provide desperately needed services in the communities across our country. For the Substance Abuse Prevention and Treatment block grant, $1.5 million, a 10 percent increase over fiscal year 1997, including the $50 million increase appropriated in the Contract With America Advancement Act, $171.6 million each for the Center for Substance Abuse Treatment and the Center for Substance Abuse Prevention for knowledge development application activities, a 10 percent increase over fiscal year 1997; and $620 million for the Safe and Drug Free Schools and Communities Act as proposed by the Administration, an 11.5 percent increase over fiscal year 1997; and $233.2 million for research in the National Institute on Alcohol Abuse and Alcoholism; and $538.3 million for the research done in the National Institute of Drug Abuse, a 10 percent increase. The treatment and prevention gap in our communities is growing. I have included information in my testimony in this regard. I would like to deal briefly with two other issues, one related to welfare reform. Mr. Miller. Considering the time factor, if you could kind of pull things together. Mr. Hagen. All right. I will do this very quickly. Basically, I think that it is absolutely essential that alcohol and drug treatment be included in our work towards welfare reform. For individuals in this population treatment means going back to work. Adequate alcohol and drug treatment are absolutely essential if welfare reform is to be successful in this country. I believe it is impossible that without treatment these individuals will even get a job, let alone keep a job, and support their children in the future. It is absolutely essential that we do this. I have included in my remarks as well as for the record a number of studies that demonstrate the effectiveness of both treatment and prevention. The most recent study, a National Treatment Improvement Evaluation study clearly documents that the provision of treatment and prevention services will provide sustained reduction in drug use. Mr. Chairman, in conclusion, I would like to say that alcoholism and drug dependency continue to be one of our Nation's most serious and costly health problems. The programs that I have discussed this afternoon are the first line of our defense to protect our children from developing alcohol and drug problems, as well as funding of last resort to treat Americans who already have developed alcohol and drug problems. As a society, we must keep these programs strong. Thank you very much. [The prepared statement of Russell Hagen follows:] [Pages 642 - 652--The official Committee record contains additional material here.] Mr. Miller. Thank you for your testimony, and thank you also for cooperating in the requirement of providing your Federal funds report attached to your statement. I appreciate your willingness to do that. Thank you very much. Mr. Hagen. Thank you. Mr. Miller. I am sorry about the time constraint we always have to operate under. But we are going to try to hold as close as we can to the five minute rule. There is an expected vote on the floor of the House around 4:00. If I have to go vote, we will have to take a long recess, and so I am hoping we can meet that goal of concluding before that time. ---------- Wednesday, April 16, 1997. WITNESS MARSHALL A. LICHTMAN, M.D., LEUKEMIA SOCIETY OF AMERICA, INC. Mr. Miller. We now have Doctor Marshall Lichtman, Executive Vice President of research and medical programs of the Leukemia Society of America. Welcome, Doctor. Dr. Lichtman. Thank you, Mr. Chairman and members of the committee, for the opportunity to comment on funding for biomedical research. I am Professor of Medicine and Biophysics at the University of Rochester, and Executive Vice President for research and medical programs of the Leukemia Society of America, a not for profit, voluntary health agency representing the health and medical research interests of more than 500,000 patients and their families with leukemia, lymphoma, or myeloma. It may not be fully appreciated that these three closely related cancers strike over 100,000 Americans each year and kill over 57,000 each year. Indeed, in the aggregate, they are the second most frequent cause of death from cancer after cancer of the lung. The Leukemia Society will invest $14 million on research in the year beginning July 1997. Over 200 young scientists conducting basic research are supported annually by this program. This funding in most cases compliments funding from the National Cancer Institute, providing an important cooperative and coordinated effort by a private and Federal agency. I finished medical school 37 years ago with an interest in the problems posed by leukemia and lymphoma. My initial clinical experiences were devastating. There was no effective treatment and patient survival for a few months was considered an achievement. The improvements in treatment have been impressive. The cure rate for childhood lympositic leukemia was virtually zero 50 years ago. The first glimmer of hope emerged from a single new drug introduced in 1948. This initiated a period of progress such that today over 70 percent of children enter long-term remission, many of whom we believe are cured. Cure rates of young and middle-aged individuals with Hodgkin's disease and some lymphomas are also in the same range. These improvements have been the result of broad-based discoveries and innovations in biomedical engineering, pharmacology, immunology, genetics, cell and molecular biology, virology, transplantation biology, radiation research, and other fields. The progress has been driven largely by the wisdom and unflagging monetary commitment of our Government. On behalf of the Leukemia Society, I offer sincere thanks for your taking a leadership role in securing substantial increases in NIH funding over the past two years. The Leukemia Society of America supports the proposal that NIH funding be increased in fiscal year 1998 by 9 percent, a level of funding cited as that required to support ongoing programs and to invest in promising new research opportunities. This is an ambitious goal but the money would be wisely invested and in the public good. Although the Leukemia Society of America has not endorsed resolutions calling for a doubling of the NIH budget or proposing the establishment of trust funds for the support of biomedical research, we applaud the efforts of Members of Congress to think creatively about future funding for research. Leukemia and lymphoma are often cited as cancer research success stories. Despite the strides we have made in their treatment, as I mentioned, more than 57,000 people will die this year from these hematologic cancers. For adults with these diseases clinical outcomes have improved during the last 20 years but cures are infrequent. Therefore, our work is far from done. I do not advocate funding for specific diseases. We have confidence that the scientific marketplace will invest in the best research ideas and that the leadership at NIH will capitalize on new research developments in ways that are most beneficial to the American people. In consultation with the National Cancer Institute, the Leukemia Society broadened its research portfolio in 1995 and initiated a translational research program. In response to that initiative, over the last two years the Society has received over 300 grants proposing new and innovative approaches to the management of leukemia, lymphoma, and myeloma. We have been able to fund only 44 laboratories that have proposed conceptually innovative approaches to treatment, committing $4.5 million of our annual research expenditures to that effort. The Leukemia Society is able to fund only about one in six applications to both our basic science and translational research programs. Broad progress in translating basic research into treatment depends on the commitment of the National Institutes of Health. As a result of this Nation's basic research investment, there are exciting new approaches for improving the treatment of cancer. Mr. Miller. I apologize for interrupting, but if you could kind of wrap things up so we can stay on schedule, I would appreciate it. Dr. Lichtman. The potential of translational research is great. Immunotherapy of cancer and techniques for modifying the genetic basis of cancer are two exciting new treatment approaches. We are defining the genetic changes that initiate cancer development and confer on cancer cell's resistance to drugs. We may therefore be able to intervene in these processes to stop the progression of the disease. The era of modern treatment of cancer began 50 years ago shortly after World War II and we are only part way to our goal. With the continued investment in a remarkable nationalbiomedical research establishment, the synergistic effect of academic, governmental, and industrial research resources, and the use of advances already made as a springboard, I am confident we will see further dramatic advances in the next decade. Thank you for allowing me to meet with you and for your kind attention. [The prepared statement of Marshall Lichtman follows:] [Pages 656 - 664--The official Committee record contains additional material here.] Mr. Miller. Thank you very much. It is one of the success stories but there is obviously a long way to go. I appreciate your comments specifically that you do not advocate earmarking funding for specific diseases. I think that is something that we as politicians should not try to do and we should let the medical/scientific community and NIH make those types of decisions. I appreciate your statement. Dr. Lichtman. I agree with that. Mr. Miller. Thank you very much for coming today. Dr. Lichtman. You are welcome. Mr. Miller. Mr. Wicker, do you have any comments or questions? Mr. Wicker. No, I do not have anything. ---------- Wednesday, April 16, 1997. WITNESSES MARY ANN QUARANTA, NATIONAL ASSOCIATION OF SOCIAL WORKERS Mr. Miller. Next, we will have Mary Ann Quaranta, Dean of the Graduate School of Social Service at Fordham. Welcome. Ms. Quaranta. Good afternoon, Mr. Chairman. I want to thank you for the opportunity to testify on behalf of the National Association of Social Workers. NASW is the largest social work organization in the world, representing 155,000 professional social workers who practice in a broad range of human service settings. I would like to talk to you briefly today about child welfare training, specifically Title IV.B and the Administration for Children and Families. Child welfare services are among the Nation's most important social service programs for children and families. These services include family service programs that provide prevention and treatment, support for abused and neglected children, foster care, family preservation and support, and adoption services. According to a 1995 State-by-State survey conducted by the National Committee to Prevent Child Abuse, over 3,100,000 children were reported abused and neglected. Child abuse fatalities increased by 39 percent from 1985 to 1995. In my own city of New York, the Administration for Children Services responded last year to over 53,800 reports of child abuse and neglect involving over 88,000 children. In 1995, one of these children was six year old Elisa Izquierdo who was brutally tortured and killed by her mother. Elisa's case was well-publicized after her death. Her death, and the thousands of other such deaths, can be prevented. One way is to ensure that there are professionally trained child protection workers. Studies have clearly shown that trained social workers obtain better results in dealing with challenging and complex cases such as Elisa's. According to the National Commission on Children, only 25 percent of child welfare caseworkers have social work training, and 50 percent have no training or previous experience working with children and families. Administered by the Children's Bureau, Child Welfare Training, Section 426, Title IV.B of the Social Security Act awards grants to schools of social work and other public and private non-profit institutions of higher learning to develop and improve education, training, and resources for child welfare providers. Students receiving Title IV.B traineeships for undergraduate or graduate degrees are required to work in child welfare agencies following graduation. These funds have been invaluable in directing more trained workers into the public child welfare field, and, I might add, in providing more stability and reducing the turnover that often occurs with those who are not trained. Despite the proven benefits of this program, funding for Title IV.B has declined dramatically from $8,015,000 infiscal year 1978 to $2 million in fiscal year 1996. We are deeply grateful for this subcommittee's support of increasing funding for Title IV.B to $4 million for this present fiscal year. I especially want to thank Representative Lowey for her leadership in supporting the additional funding. With escalating numbers of abused and neglected children, and the demand for more skilled child welfare workers, NASW requests that funding for child welfare training, Title IV.B be increased to $8 million in fiscal year 1998. Let me begin my comments on social work research by thanking you, Mr. Chairman, for your continued leadership in securing full funding for NIH. We also thank the subcommittee members for their continued support of the Office of Behavioral and Social Science Research. As major providers of health care services, social workers are particularly concerned about ensuring adequate funding for research on high risk populations and serious behaviorally related health problems. In recent years, NIH has increased support for social work research and the development of social work capacity in graduate schools of social work. This research is critical in helping to inform social workers and other professionals who are on the front lines to build empirical base knowledge that forms a foundation for more effective social work training and practice. Mr. Miller. I am going to have to ask you if you can kind of speed things to a conclusion. Thank you. Ms. Quaranta. The NASA requests increased funding for NIMH and the National Institute on Drug Abuse, and urges continued support for training more social work researchers and increasing social work research capacities. I just wanted to make a few additional comments, very briefly, Mr. Chairman, on the importance of that research being directed toward child abuse and neglect. We would hope that your subcommittee would support that research. We are grateful for your attention to this issue. We would hope that your report language for fiscal year 1998 supports a continuation of the working group that has been addressing this issue and the implementation of their recommendations for further action. Thank you very much, Mr. Chairman. [The prepared statement of Mary Ann Quaranta follows:] [Pages 667 - 677--The official Committee record contains additional material here.] Mr. Miller. Thank you very much. Balancing the budget is not easy work and fiscal responsibility is not easy work because you have such tough choices. By the way, my daughter is getting an MSW next month, so I look forward to no longer having to support kids in school right now. Ms. Quaranta. Congratulations. Mr. Miller. Thank you very much for appearing today. ---------- Wednesday, April 16, 1997. WITNESS DONALD E. SEATTER, NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT ASSOCIATIONS, INC. Mr. Miller. Now, Donald Seatter, President of the National Council of Social Security Management Associations. Mr. Seatter, welcome. Mr. Seatter. Thank you. First, let me thank this committee, you, Mr. Miller, and Chairman Porter for both the opportunity to testify and for your continuing support of the Social Security Administration's administrative operations. I represent over 3,000 managers and supervisors working in the field offices and teleservice centers throughout the country. We are responsible for delivering the services necessary to keep the millions of people we deal with satisfied that our administration of their money is sound. Our experience is that the buck stops with us as far as the average citizen is concerned. We believe in what we do, and we believe that Social Security's 60 year reputation for sound administration is based on the fact that we put a human face on Government. As I combed over SSA's budget estimate justification, I was somewhat taken aback at how little is stated about the accomplishments of Social Security offices throughout the country, rather that we talk about focus groups and strategic planning, redesigning processes, and so forth, all necessary perhaps, but rather sterile at best in shedding light on what the agency needs. Rather than read from my prepared statement, I want tofocus on three or four areas where I feel this committee can assure that in the context of the fiscal year 1998 budget funds are appropriated to either enhance agency performance or correct existing problems. Let me touch briefly on the telephone service. Last year the former Commissioner of Social Security committed to a standard of access to our 800 number that may well be attained at the expense of other vital services. The 800 number serves a needed public service, but since last year's commitment to this committee, those of us in SSA have seen single-minded chasing of a service level number that is probably in truth unreachable and not necessarily in the context of other customer needs all that necessary. Meanwhile, phone service in local Social Security offices is in critical shape. Outmoded equipment, scarce personnel makes most managers ashamed of the service that they are offering. We desperately need voice mail and other automated enhancements to at least alleviate the problem. Congress mandated that Social Security's local offices provide phone service in Public Law 101-508. Local service and 800 number service need to be balanced and complimentary. That is not now the case. The General Accounting Office recently added the SSI program to the high-risk list of programs vulnerable to fraud. This comes at a time when the agency is in what I can only label mindless pursuit of a supervisory ratio and is eliminating operations supervisors, the position in field offices most likely to detect either program or employee fraud. A recent case that I became aware of involving $100,000 in employee fraud can be correlated directly with the lack of a supervisor. That supervisor had been ``delayered.'' Management fads come and go but to leave a Social Security office with no supervisor on duty for many hours of the week in name of a ratio does not reflect common sense. Employee safety is becoming more costly in SSA. Much has been done to enhance physical security, but it seems likely that the office guards will be needed in many locations well into fiscal year 1998. Many guards were added in order to protect employees and customers alike during the welfare reform work laws. It would appear at this point in time that welfare reform work laws will not be completed on their original schedule. Policy delays almost assure a significant part of welfare reform will be handled in fiscal year 1998. Regarding automation, our IWS LAN installation seems to be falling a little bit behind schedule. Hopefully, this is only a short-term problem since so much in future productivity increases is dependent on an on time start for this automation initiative. Slippage in IWS LAN will delay any productivity savings promised by the agency in its cost justification. Those of us who lived through earlier agency downsizings are somewhat skeptical of FTE savings based on automation that is yet to happen. My written statement contains several additional areas of concern that I hope the committee will find of interest. This committee has played an active part in bringing SSA to identify specific performance objectives. That effort, if continued, should include some concrete suggestions to move SSA toward a better assessment of all services provided in the field and an improved balance of service which more efficiently coordinates the operations of all SSA components. Today, even as we give necessary priority to welfare reform and continuing disability reviews, we allow equally necessary work to slip because field staffing capacity is strained to the breaking point and trade- offs among workloads is still the order of the day. We who work for SSA in communities throughout the country are doing our very best to maintain first-class service to the American people. I appreciate this opportunity, Congressman Miller, and will be happy to respond to any questions. [The prepared statement of Donald Seatter follows:] [Pages 680 - 686--The official Committee record contains additional material here.] Mr. Miller. Thank you very much for your testimony. I appreciate your being here today. ---------- Wednesday, April 16, 1997. WITNESS BRENDA L. CRABBS, ARTHRITIS FOUNDATION Mr. Miller. We will proceed with Brenda Crabbs, representing the Arthritis Foundation. Good afternoon. Ms. Crabbs. Good afternoon. Mr. Chairman, my name is Brenda Crabbs and I am Chair of the Public Policy and Advocacy Committee for the Maryland Chapter of the Arthritis Foundation, and a member of the national Public Policy and Advocacy Committee. I am really honored to be here today on behalf of the Arthritis Foundation. The Arthritis Foundation is a national voluntary health organization that works on behalf of the nearly 40,000,000 Americans who are affected with some form of arthritis or related disease. Our primary mission is to support research, to find a cure or prevention for arthritis, and to advance professional and community education about the disease, and to provide services to those who have the disease. Last year, the national organization spent in excess of $14 million to fund research projects. Our Maryland chapter spent in excess of $1 million to fund research grants. So we are doing something to try and help ourselves. Arthritis is the leading cause of disability in the United States, severely disabling over 7,000,000 Americans. It disproportionately afflicts women with 60 percent more cases in women than men, and it affects minority women in more cases than caucasian women. Over the next 25 years as the population ages, the prevalence of arthritis is expected to increase by about 12,000,000, for a total of 60,000,000 by the year 2020. The annual cost of arthritis and muscular skeletal diseases currently is about $126 billion in medical care and lost wages. That is a significant number and it is likely to grow as the population ages and more Americans are afflicted with arthritis. Certainly the economic consequences of the disease make prevention and finding a cure particularly important. But even more debilitating is the physical toll arthritis takes on its victims. Mr. Miller. There is a vote going on now, but we wait to see what it is. Please continue. Ms. Crabbs. A friend of mine recently said to me that arthritis is not a sexy disease, it is not a killer disease. But I can tell you, as somebody who has arthritis, I have had rheumatoid arthritis for over 34 years, the debilitating mobility and significant pain that one has to go through is certainly something to deal with. It takes me longer to do absolutely everything, from getting out of bed in the morning to showering, to doing my hair, to putting on makeup, to getting dressed and trying to go on with life. I consider myself fortunate because I have access to very good medical care and have had good insurance, and I have the wherewithal to pay for the increased services that I need whether it is somebody to clean my house, carry my groceries, or whatever to help keep me independent. Our written testimony goes through a couple of the different kinds of arthritis and I will not dwell on that. But according to a study by the Centers for Disease Control, 6,000,000 people believe that they have arthritis but they have never consulted a physician even though 75 percent of them saw a physician for other problems. Part of the reason for the delay in seeking treatment may be attributable to misconceptions about the availability of treatment. In an interview of patients with muscular skeletal conditions, 40 percent thought that nothing could be done for them. Clearly, we must do a better job of getting the message out and of reaching everybody who needs our assistance. The Arthritis Foundation requests $2 million be provided through the CDC in fiscal year 1998 so that the full dimensions of the problem of arthritis can be more accurately understood. There can be all kinds of studies done in cooperation with hospitals, doctors, and community organizations to more effectively evaluate what's going on and disseminate interventions. NIAMS is also an important factor here. With this committee's tremendous support and leadership through the congressional support of NIAMS in the past, we have accomplished much in the past ten years toward relieving the burden of arthritis. Again, our written testimony lists some of the advances that have been made. I just want to speak to one of them, and that is the better understanding that we have gotten with regard to implantware and making joint replacement surgery more feasible for younger people. I have two knee replacements, one of which was done eight years ago. I, just this February, had to have a revision on that knee replacement. I am told that the plastic cartilage which is what wore out this last time is now going to last me a lot longer because of the new plastic that has been developed for this kind of implant. So I think that the technical research is extremely important and it certainly has affected me. To summarize, these advances in arthritis research would not have occurred without the strong commitment to biomedical and behavioral research that Congress has provided. However, many exciting and promising research opportunities remain unfunded including further research on arthritis in children and genetic therapy by immunization for rheumatoid arthritis, to name only two. Researchers hope to improve their understanding of arthritic diseases through the development of new plastics and adhesives that will lead to even greater surgical successes and improved prosthesis as well as thorough identification of triggers for those at high risk for arthritis. This also affects me personally because I have a four year old grandson who has recently developed a Baker cyst, one of the forms of arthritis, behind his knee. So anything that can happen to help him is certainly important. With regard to NIAMS, we are asking for a 9 percent increase, to $280 million. You all have been so supportive in the past and we need and hope that support will continue. Thank you so much for giving me this opportunity to appear today. [The prepared statement of Brenda Crabbs follows:] [Pages 689 - 694--The official Committee record contains additional material here.] Mr. Miller. Thank you very much for testifying today. Ms. Crabbs. Thank you. ---------- Wednesday, April 16, 1997. WITNESS JEFFREY H. COBEN, M.D., INJURY PREVENTION RESEARCH CENTER Mr. Miller. There is a series of votes taking place on the floor of the House, so we are going to have to break in about seven or eight minutes. Doctor Coben, if you can stay with five minutes, fine, we can do that now and then we will take a recess while we go vote. Doctor Coben is here from the University of Pittsburgh, Center for Injury Research and Control. Welcome. Dr. Coben. Thank you, Mr. Chairman and members of the subcommittee. This will be a brief statement. I understand that Mr. Porter is injured. I am here to speak with you specifically about the importance of injuries as a health problem and the need to allocate additional resources to the National Center for Injury Prevention and Control at the CDC. My name is Jeffrey Coben. I am a practicing emergency medicine physician. I am also the founder and Director of the Center for Injury Research and Control at the University of Pittsburgh. We are one of the ten Centers of Excellence supported in part by the National Center at the CDC. Over the last 13 years, I have worked in a number of emergency departments across this country. I have worked in Illinois, in Florida, and in Pennsylvania, in some of our largest cities and in some of our most rural communities. As a practicing emergency physician, I can tell you that I believe that injuries are the most important health problem affecting many of our communities. In 1996, there were over 90,000,000 visits to hospital emergency departments in this country. Fully one-third of those were due to injuries. Each year over 150,000 Americans die from injuries. This is more than all Americans who died in the entire Vietnam War. Since it is young people who are most frequently injured, the costs to our society are enormous. But rather than dwelling on statistics, I would like to tell you that I have personally had to deal with these injured patients. I have smelled the burnt flesh of people who have died from preventable injuries due to house fires. I have seen the look on the faces of young men realizing for the first time that they will be paralyzed for the rest of their lives due to injuries that were unnecessary. I have had to sit down with parents and look at them in the face and tell them that their beloved child has been taken from them despite all of our efforts due to injuries that were avoidable and preventable. Beautiful children killed in swimming pools, in automobiles, and through violence, killed by injuries that were unnecessary, preventable, and avoidable. This plague on our society can be defeated. Like other plagues that we have dealt with, whether it is malaria or polio, breast cancer or heart disease, one of the keys to defeating this is to dedicate resources against. This is why your support of the National Center for Injury Prevention is so very important. The National Center provides a focal point and leadership that is needed to deal with the problem of injury. In 1990, when I decided to devote my career to injury prevention, I turned to the National Center for guidance. I learned through their publications, through their research programs, and their meetings how to scientifically approach the problem of injury. No other Federal agency provides this type of leadership or operates from this paradigm. The National Center has repeatedly demonstrated over the last eight years how bringing together scientists, engineers, policy experts, public health experts, and medical experts can significantly reduce injuries from house fires, from car crashes, falls, bicycles, and motorcycle crashes. More people are needed to work on this problem. We have the expertise, we have the knowledge, we need more people working on this. Much more work needs to be done. Research needs to be conducted on how to implement proven safety measures in our communities. We need to learn more about what works and what doesn't work in urban communities and in rural communities. And we need to train the next generation of scientists on how to successfully approach the problem of injury. This requires resources. The National Center for Injury Prevention receives approximately one-fiftieth the level of funding as the National Cancer Institute, and one-thirtieth the level of funding as the National Heart, Lung, and Blood Institute. Based upon all the statistics, and based upon the patients that I see in the emergency departments, I think that this disparity does not make sense. The patients in our emergency departments cry out for your help to relieve the unnecessary suffering from injury in America. If we have the will, we have the way to accomplish this task, and that is by providing additional resources to the National Center. The amount of financial resources that are allocated to the National Center will translate directly to the level of human resources that are dedicated against this problem, a problem that robs us of our single most important resource--our children. Thank you, Mr. Miller. [The prepared statement of Jeffrey Coben, M.D., follows:] [Pages 697 - 703--The official Committee record contains additional material here.] Mr. Miller. Doctor Coben, thank you. On Monday, this committee was in Atlanta and spent the day at the CDC. Doctor Mark Rosenberg was our lunch speaker and he was with us most of the day, so we are aware. And he has testified before the committee. You do great work. It is hard being an emergency room doctor, so I congratulate you on that. Because of the votes, and we have two votes, we will take about a 15 minute recess. [Recess.] ---------- Wednesday, April 16, 1997. WITNESS DAVID ROOS, THE JUVENILE DIABETES FOUNDATION LEAH MULLIN Mr. Miller. The subcommittee will return to order. Our next witness is David Roos. One of our subcommittee members will be introducing you personally. Welcome. I apologize for the necessity for us to interrupt the hearing to go vote, but we do not really plan ahead for these. We had two quick votes and now we are going to be able to continue uninterrupted for the remainder. Mr. Dickey. Mr. Dickey. Thank you, Mr. Chairman. I would like to introduce to this committee my friend, Duke Roos. Duke and I have known each other maybe six years, but the friendship has been pretty strong during that period of time. He started some time ago talking to me about juvenile diabetes and the fact that his daughter had the disease. It did not mean a whole lot to me, even though I listened and I knew it was a problem and I knew it related to this committee, until his daughter died. I think he is going to tell the story. Here is a successful businessman, a loving father, a person who cares about people. I guess if anything else, Duke Roos care about people. I am glad to have him as my friend. It is an honor to present him to this committee, and I wish him well in his testimony. Mr. Roos. Thank you, Jay. You have been a good friend to me, too. Congressman Miller and subcommittee members, my name is David Roos, and I am from Atlanta, Georgia. Next to me is Leah Mullin, a member of the JDF national board and a parent of a child with diabetes. I welcome the opportunity to be with you here today representing the Juvenile Diabetes Foundation and the 16,000,000 people in this country with diabetes. I do not have a lot of statistics for you to digest, since I am appearing before this committee not as a professional, but to talk to you from the heart. Twenty years ago, my wife and I were told that our daughter Debbie had juvenile diabetes. While we knew this was bad news, we had no idea how bad it really was. Sure, there would be times when she would not feel well, and we knew that she would have to give herself several shots a day, but, what the hell, it could be worse, we thought. She would, with our help, live to a ripe old age. In short, my wife and I believed in our capacity to protect our little girl from the daily and long-term threats of diabetes--insulin shock, commas induced by otherwise normal illnesses such as the flu, and the usual crushing litany of kidney failure, neuropathy, heart disease, and blindness. Debbie was only 12 at the time of her diagnosis. We were wrong 20 years ago. Debbie's diabetes was, in fact, about the worst news we could have received. My wife and I were ultimately unable to prevent the insidious, destructive process that diabetes wreaked in the child thatwe loved and admired. Today, she is dead. Debbie passed away on January 5, 1997 at the age of 32, at the prime of life, because of heart problems caused by diabetes. Debbie's mother and I are grateful, however, that we had her with us for 32 years during which time she was able to lead an almost normal life. She went to overnight summer camp for nine years, attended the usual schools, culminating in her graduation from the University of Texas as a Dean's List student. After graduation, she was able to function at a high level in the workplace, working in corporate sales for such large corporations as Coca Cola, Pac Tel, and AT&T. Her mother and I were very proud of her. Approximately 18 months ago things began to change. She started losing her sight and eventually became legally blind because of diabetes. Because she could no longer function in the corporate world, she came to work for me. What I saw was a tragedy unfolding. In addition to being legally blind, she had developed gastroparesis, a paralysis of the stomach caused by diabetic neuropathy which, among other things caused her to be nauseated for the better part of each day. In fact, she was sick to her stomach virtually every day for over five years. We were finally able to help her stomach condition by purchasing the drug Motillem in the Bahamas, since it is not available in the U.S. that is a story for another day. What I have described is just the tip of the iceberg. I realize there is not enough time today for me to chronicle all the challenges associated with her diabetes. But, if I do nothing else, I hope that I will have made you aware that there presently is no cure for diabetes and that current treatments are inadequate. My daughter Debbie died, not because she did not take care of herself but, because of the luck of the draw, she was unfortunate enough to develop diabetes. Debbie died because insulin is not a cure--I repeat, it is not a cure. The 1,300 people at her funeral knew that, and I want to make sure that you do, too. Records show that each year diabetes and its complications contribute to the death of 170,000 Americans, more than die of AIDS and breast cancer combined each year, and that is probably an understatement due to reporting inaccuracies relating to the primary cause of death. People with diabetes are two to four times more likely to die from heart disease, and diabetes accounts for approximately 40 percent of all kidney failures. One thing I know for sure is that the lives of 16,000,000 people with diabetes and the 100,000,000 or so who love them change for the worse once diabetes comes into their lives. It is we who implore you, you who are in positions to really make a difference, to take decisive action to eradicate diabetes once and for all. Do not be deluded to thinking that insulin is a cure. Do not assume that people, and particularly youngsters, with diabetes can lead the robotic, regulated lives that tight control of glucose levels demands. Do not for a moment think that we have solved the problems of diabetes-related complications when genetic researchers are hinting that yet unidentified genes may well determine the fate of a person with diabetes. You should be thanked, on behalf of the families who know diabetes on a personal level, for all the research breakthroughs made possible to date by your support of diabetic research. On a personal level, I am grateful for the medical advances that allowed my daughter to live 20 years since her initial diagnosis. She had the opportunity to be married to a wonderful man for four years which, despite being fraught with medical problems, were her happiest. We were provided with memories of Debbie living life to its fullest, memories which will continue to be a source of comfort to us. We as a Nation cannot rest on these accomplishments. For all of the Debbies out there, we need to make finding a cure for diabetes a national priority. It looks to me as if diabetes funding at NIH has languished a bit. I wonder why, given the increasing numbers of those afflicted and the $138 billion of direct and indirect costs of diabetes borne by this country annually. If, as the Speaker of the House suggests, 25 percent of Medicare costs go to the care of diabetes and its complications, our strategy should be clear. As a businessman, I know that an increased investment in diabetes research is a good deal. As a grieving parent and a concerned citizen, I know that increased funding of diabetes research is for the good of all mankind. It is too late to help my daughter, except to honor her memory by helping those who still suffer from diabetes. Some people may wonder how I can appear before you so soon after my daughter's death. As difficult as it is, what helps keep me going is the search for a cure so that others will not have the experience that we had. My family, as well as the Juvenile Diabetes Foundation, is committed to creating a world where no one will fear diabetes and its complications. I thank you, Congressman Miller, and other members of the committee, and especially my good friend Jay Dickey for the opportunity to be heard today. You have the opportunity to positively shape the future of tens of millions of your constituents and their families, and I hope you rise to the challenge. More than anything, I want to come back here some day to share what might become one of this Nation's finest moments--the day when we will finally announce as partners a cure for diabetes. Thank you. [The prepared statement of David Roos follows:] [Pages 707 - 713--The official Committee record contains additional material here.] Mr. Miller. Thank you, Mr. Roos. We appreciate your testimony. You surely can personalize the tough decisions we have to make in biomedical research. But the one area that rates very high in this committee, with both Democrats and Republicans, is biomedical research, whether it is cancer or leukemia or juvenile diabetes. On Monday, this committee, including Mr. Dickey, were in Atlanta at the CDC. We were talking specifically about diabetes and the progress that has been made and the need to continue that support. I appreciate your personal commitment to that and for bringing the personalization of how biomedical research really affects us. Mr. Dickey? Mr. Dickey. Thank you, Mr. Chairman. Good job. Mr. Roos. Thank you. Mr. Miller. Thank you. ---------- Wednesday, April 16, 1997. WITNESS GARY C. SCHOENWOLF, THE AMERICAN ASSOCIATION OF ANATOMISTS Mr. Miller. Next we will have Doctor Gary Schoenwolf, Professor in the Department of Neurobiology and Anatomy at the University of Utah School of Medicine. Welcome. Mr. Schoenwolf. Thank you, Mr. Chairman and distinguished members of the subcommittee. I am Gary Schoenwolf, a Professor at the University of Utah. I greatly appreciate the opportunity to testify before your subcommittee on the fiscal year 1998 appropriations for the National Institutes of Health. I do so as President of the American Association of Anatomists. The members of our society focus their scientific efforts on attaining a better understanding of the structure and function of the human body. I would like to sincerely thank this committee and Chairman Porter for the continuing support and direction that you have shown on behalf of basic biomedical research over the course of the last several years. All of us in the biomedical research community recognize that you face difficult challenges and we are truly grateful for your generous support of and commitment to biomedical research. Before listing our recommendations, let me point out that our goal is to improve the health of all Americans. As a scientist and particularly as an embryologist, I believe as the Psalmist has written that we are ``fearfully and wonderfully made.'' Disease destroys that which was once wonderful, and our goal as biomedical researchers is nothing short of destroying that disease. We have six recommendations which are listed in my written testimony. Here, because of time constraints, I will highlight only two: First, an appropriations level for the National Institutes of Health of $13.89 billion. That is a 9 percent increase over fiscal year 1997; and secondly, that the efforts of the NIH to increase the number of minority biomedical scientists be strengthened. Mr. Chairman, we are on the threshold of a highly productive era in biomedical research. To borrow a phrase from W.C. Fields, ``We have a veritable plethora'' of opportunities now before us. My own area of research concerns early development of the embryo and the prevention of birth defects. We study the early development of the nervous system. Unfortunately, in 1 in about every 1,600 babies, that is in more than 2,500 babies per year in the U.S. alone, this process goes awry resulting in serious and life-threatening birth defects. Our NIH-supported work has overturned the dogma in the field and has shown that early development of the nervous system involves a type of cellular ballet in which highly choreographed cellular movements and interactions are essential for normal development. If time would permit, literally hundreds of other recent advances obtained from NIH-supported research could be listed, and a few of those are highlight in my written testimony. Mr. Chairman, I am here today mainly because of my deep concern that without the dedicated efforts of Congressman and Congresswomen such as those on this committee that many of these opportunities will be lost. Competition for research grants has reached discouraging levels. In fiscal year 1996, only one in every four credible grant applications was funded by the NIH. Having served recently on an NIH Study Section reviewing grants, I can tell you that it is heartbreaking to reject three-fourths or more of the grants that you review when many of the rejected applications would have provided important advances. This poor success rate for funding frustrates and disillusions existing and potential biomedical scientists. More importantly, it makes all Americans the ultimate losers. A care put off means that Americans will suffer needlessly from diseases that could have been prevented. We advocate that the success rate for new investigator- initiated projects be boosted to 30 percent. To support this increased success rate to fund excellent applications, we strongly recommend a 9 percent increase in funding for the National Institutes of Health. Mr. Chairman, my second concern is the status of women and minorities in science. We feel strongly that efforts must be made to improve K-12 education to increase the pool of students choosing science for a major in college and for their future careers. Furthermore, we strongly endorse NIH's Minority Opportunity for Research programs. Let me tell you one story. Last week, I was in New Orleans. In the morning I read an article in the ``USA Today'' about the large number of teens who will spend most of their lives in prison. At noon, I went to a luncheon for minority students support in part by the National Institutes of Health. As I talked with many of the almost 300 African-American students who attended, my depression of the morning quickly changed to optimism. Our young people want a chance to make a positive contribution to society. Programs that support under- represented minorities do make a difference. I urge you to provide funding to expand such programs. In closing, let me say that as a working scientist, but, more importantly, as an American citizen, I urge you to continue the life-saving investments that you have made on behalf of the American people by supporting the National Institutes of Health. Thank you very much. [The prepared statement of Gary Schoenwolf follows:] [Pages 717 - 725--The official Committee record contains additional material here.] Mr. Miller. Thank you very much, Doctor. We have to make these tough choices up here of scarce resources. Somebody such as yourself certainly understands the importance of NIH. We just need to get more people out there understanding their role. I know it is very frustrating when you can only accept one out of every four. The more we can get those outside the biomedical community understanding and recognizing that NIH- supported research is critical to this country, the better off we are going to be. Thank you for your testimony. Mr. Schoenwolf. Thank you. ---------- Wednesday, April 16, 1997. WITNESS PATRICK B. HARR, M.D., THE AMERICAN ACADEMY OF FAMILY PHYSICIANS Mr. Miller. Our next witness is Doctor Patrick Harr, representing the Academy of Family Physicians. Doctor Harr has been to a doctor recently it seems. Dr. Harr. I hope Doctor Cohen has left because this was probably avoidable and preventable. [Laughter.] Dr. Harr. Good afternoon. I am Patrick B. Harr, M.D., from Maryville, Missouri. It is my honor to serve as President of the 85,000 member American Academy of Family Physicians. I am delighted to spend some time with you this afternoon to talk about an issue that is vital to the millions of people who need primary care doctors; and that is, funding of Title VII, Section 747, for family practice. Mr. Chairman, the Academy appreciates the increased funding provided by this subcommittee for fiscal year 1997. We would also like to thank Representative Bonilla for his leadership on funding health professions programs. Nevertheless, we have a tough battle this year and funding for Section 747, Family Practice Programs, is in crisis. At a time when the marketplace is sending out signals that the U.S. needs more family physicians, the Administration released a budget that cuts funding for primary care training by 90 percent, from $82 million to $8 million. At a time when the marketplace in the form of managed care organizations reports that there is shortage of family doctors, we are fighting for only modest funding increases necessary to produce those physicians who are needed. At a time when the marketplace tells us there are not enough doctors for well over half of all American counties, we are told that family practice programs do not need a lot of Federal dollars. Let me share some information with you. We do not have a so-called pure physician market in the United States. Medicare funding of graduate medical education at $6 billion a year skews training of America's physicians to the subspecialties. This $6 billion goes almost exclusively to hospitals which train subspecialties rather than to offices and clinics and ambulatory sites where we train the family doctors. While $6 billion is a lot of money for medical training, the money is going to produce the wrong kind of physicians. We have a shortage of primary care doctors in the United States. The experts agree we should have a 50-50 mix of subspecialists and primary care physicians. But the split now is 70-30. You may have heard that the number of medical students selecting primary care training is increasing. That is true, but it is too early to declare victory. Only about one- third of our Nation's medical students pursue a career in primary care. That figure should be well over half if we are to move toward a 50-50 split. In fact, the shortage of primary care physicians is so severe that according to one source if all the medical school graduates from now to the year 2025 chose primary care, only then would we achieve a 50-50 mix. Is now the time to be cutting Title VII funds? We think not. The $49 million in Title VII funds currently going to family practice programs really make a difference in reaching this goal. Not only is it a small counter-balance to the $6 billion in Medicare GME, but this money actually helps produce more family doctors. For example, a GAO report shows that medical schools with Title VII-funded family medicine departments produce more graduates who pursue primary care, and schools with third year clerkships produce graduates who are more likely to choose family practice as a career. The American Academy of Family Physicians is fully aware of the Nation's budget problems. We are aware of current problems around mandatory versus discretionary spending. We support responsible Federal spending. We believe responsible Federal spending should include Title VII. Dollars for family practice programs yield measurable results--more family doctors to take care of our Nation's babies, children, men and women, and senior citizens throughout rural as well as urban America. To cut funding for family practice programs now when the marketplace is crying for more family physicians and the current direction of federally-funded graduate medical education is to produce more subspecialists rather than family physicians just does make for good health policy. In addition, there is insufficient funding for primary care research in this country, research that responds to the needs of the general population. We strongly recommend an increased funding of the Center for Primary Care Research within the Agency for Health Care Policy and Research to help meet this most critical need. We ask you to increase funding for Section 747. More money for family practice programs means more family doctors. More money for primary care research means finding the best mix of preventive and therapeutic care to provide the best outcomes. I deeply appreciate the opportunity to testify before you, and would be happy to answer any questions. Thank you. [The prepared statement Patrick Harr, M.D., follows:] [Pages 728 - 735--The official Committee record contains additional material here.] Mr. Miller. Thank you, Doctor Harr. As president of a national association, you probably get lots of free time to travel to Washington or wherever to testify. Thank you for taking the time to come here today. Dr. Harr. Thank you. ---------- Wednesday, April 16, 1997. WITNESS ROBERT J. RUBEN, M.D., PROFESSOR AND CHAIRMAN, DEPARTMENT OF OTOLARYNGOLOGY, PROFESSOR OF PEDIATRICS, ALBERT EINSTEIN COLLEGE OF MEDICINE, YESHIVA UNIVERSITY, AND MONTEFIORE MEDICAL CENTER, REPRESENTING THE AMERICA ACADEMY OF OTOLARYNGOLOGY-HEAD AND NECK SURGERY, INC. Mr. Miller. Next, Doctor Robert Ruben, Professor of Pediatrics and Chairman of the Department--I would not even mention the department. I am sorry--at the Albert Einstein College of Medicine, Yeshiva University. Dr. Ruben. Thank you, Mr. Miller and members of the subcommittee. I am Robert J. Ruben, Professor and Chairman of the Department of Otolaryngology--ear, nose, and throat--at the Albert Einstein College of Medicine and the Montefiore Medical Center, Bronx, New York. Today, I am representing the American Academy of Otolaryngology-Head and Neck Surgery, the world's largest organization of otolaryngology and head and neck surgeons. There are more than 10,000 members including 97 percent of all board certified otolaryngologists. Mr. Miller and members of the committee, first of all, I want to thank you and all the colleagues at the subcommittee for the hard work you have done in funding of the National Institutes of Health for the fiscal years 1996 and 1997. This was extraordinary. I want to speak today about three areas of particular interest to our Academy. The first is our support of the National Institute of Deafness and Other Communication Disorders; the second, the National Institute of Environmental Health Sciences; and the third, our support of the National Institute of Dental Research. First, the National Institute of Deafness and Other Communication Disorders. The programs areas of this Institute are concerned with the most critically important aspect of contemporary, economic, and social success--communication--and the underlying biology which impairs or enhances a person's communication abilities. During the recent past, there have been many advances in our understanding of these diseases processes underlying communication disorders and how these conditions can be prevented or cured. One of the most exciting has been the recent discoveries in the area of hearing. Heretofore, the inner ear, the cochlea, was considered to be fundamentally untreatable and was cared for with some form of hearing aid or electronic implant. Now, scientists throughout the United States and the world are working on molecular biological means to prevent inner ear deafness, repair a damaged inner ear, and to replenish the cells which have been destroyed. These studies were not even considered a few years ago. Now there may soon be clinical application of the fruits of the fundamental research which you through the NIDCD have supported. These ongoing studies will utilize all four areas which the NIH and the NIDCD are strengthening--molecular biology, the determination of molecular growth factors needed for protection, repair, and replenishment; molecular genetics, the counterization of the molecular genetic processes of deafness and the mechanisms needed for protection, repair, and replenishment; imaging, identifying/defining the disease states of the inner ear and evaluating the effects of restoration on brain processes, especially speech and language; integrative neuroscience, optimizing the most efficient and effective means of preserving central neural structures and determining the dimensions of integration of sensory information so as to optimize receptive and expressive oral language. The National Institute of Deafness and Other Communication Disorders continues to be highly successful. The grants which are funded are some of the highest priority scores from the various Study Sections. Unfortunately, there is such an over- abundance of superior research proposals that excellent to outstanding vital research is not funded. An incremental increase in resources is essential for NIDCD, the Institute which is concerned with the enhancement of communication abilities of Americans that allows us to be more competitive in the world's markets and enhances our domestic tranquility, the basis of present day American society. Secondly, the National Institute of Environmental Health, which deals with relationships between environment and human health. As I indicated to the committee last year, this Institute funded a conference that our Academy of Otolaryngology cosponsored with the National Association of Physicians for the Environment and Air Pollution on air pollution impacts on body organs and systems. This was a very successful conference which led to the publication of a slide series based on papers published within our Academy Journal. Thirdly, I would like to emphasize the work of the National Institute of Dental Research. The American Academy of Otolaryngology-Head and Neck Surgery wishes to bring to your attention the excellent programs the NIDR for establishing four new oral cancer centers. These centers were laid in our understanding of these disfiguring and deadly cancers. Oral cancer, in the main, is associated with tobacco and alcohol abuse. How these cancers come about especially in association with viral infections that may block tumor suppression genes and enable proliferative genes is a basic area which is being studied. Mr. Chairman and the committee, we, the Academy, otolaryngologists fully support the request of the Ad Hoc Group for Medical Research Funding, of which we are members, for a 9 percent increase overall for National Institutes of Health. Because of the special importance and extraordinary demands of outstanding science upon the National Institute of Deafness and Communication Disorders, we request a 12 percent increase for the NIDCD. Mr. Chairman, thank you for the opportunity to testify. I would be pleased to answer any questions which you may have. I might add, I have spent much time in your district; both enjoyably and intellectually very, very useful, but that is another story. [The prepared statement of Robert Ruben follows:] [Pages 738 - 749--The official Committee record contains additional material here.] Mr. Miller. Well, thank you. Thank you for coming today and testifying. We have these tough choices and this must be very frustrating that, as the previous witness said, only one out of four research grants are funded. When you have limited resources, having to choose is not always easy. So we do the best we can. Dr. Ruben. NIDCD in the last round was a little bit worse. It was 12 percentile. Mr. Miller. Is that right? Dr. Ruben. Yes, sir. Mr. Miller. We will do the best we can. Dr. Ruben. Thank you, sir. Mr. Miller. Thank you for coming today. ---------- Wednesday, April 16, 1997. WITNESS SUSAN SCRIMSHAW, THE ASSOCIATION OF SCHOOLS OF PUBLIC HEALTH Mr. Miller. Next we have Doctor Susan Scrimshaw, Dean of the School of Public Health at the University of Illinois at Chicago. Doctor Scrimshaw is here representing the Association of Schools of Public Health. Ms. Scrimshaw. Mr. Chairman, I am Susan Scrimshaw, Dean of the School of Public Health, University of Illinois at Chicago, and Chair of the Legislative Committee of the Association of Schools of Public Health. A statement showing the amount and source of Federal grants that the Association and I have received in the current fiscal year along with my biographical sketch are attached to my written testimony. I am grateful for the opportunity to testify here today. I should mention that I also have spent some enjoyable time in the State of Florida. Last week was Public Health Week and I was the keynote speaker at the University of South Florida School of Public in Tampa. I enjoyed the school very much and obviously enjoyed the stay there. I have submitted a written statement and, with your permission, I would like to just make a few comments on that. In the written comments, you will see requests for support for our graduate students, our public health faculty, the special projects, public health physicians, and you have just heard some testimony on that, preventative medicine residencies, minority recruitment programs, NIH research, maternal and child health, and others. I also want to emphasize that there is a shortage of adequately trained public health professionals. Again, you just heard some testimony on that. With partner with the family practice and preventative medicine in training. The Department of Health and Human Services reported to Congress the need for trained public health professionals could double the current level, especially because of the changes with managed care and the need to look at prevention. A lot of studies show that we are under represented in terms of people with public health training. But my more informal comments, I first of all want to thank you, Mr. Miller, and this committee for the work that you have done over the last few years and your leadership in promoting and protecting the health of the American people through your support of research and training. As you know, every dollar spent on preventing disease results in significant savings. In the City of Chicago alone, money spent on detection and treatment of tuberculosis in the last year saved over $7 million in hospitalizations and yet it was very hard to find those prevention dollars. Public health measures account for 25 of the 30 years of life expectancy that we have gained in this century. Since you were just at CDC, you probably heard these figures. We are proud of them. You have probably also heard Doctor Satcher say that although health care costs have been rising, we spend, he is saying, 1 percent of our health care dollars on prevention. We urge you to continue supporting research in key public health areas and training of public health professionals because if 1 percent is getting us so much, we ought to be able to do a lot better. Also, Mr. Chairman, let me describe how some of the agencies that fall under the purview of this committee work in partnership with the School of Public Health. I saw examples of this as well in your own State. As you know, I have the honor of leading the only School of Public Health in the State of Illinois and I am also on the Board of Health for the City of Chicago, so I speak from a variety of perspectives. Our school and other schools work in close partnership with Federal, State, county, and city agencies. We multiply the dollars that come to the schools. I would like to list how some of these programs impact, just to give you a few examples. CDC, which you just visited, at Illinois we have one of the largest, most diverse of the CDC-funded prevention centers. We have now only 15 percent of the funding coming from the CDC original prevention center grant and the rest of it is coming from NIH, from private agencies, HRSA funds, other Federal funds. So we've done a lot with that 15 percent. We have projects on heart disease prevention for older adults, for example, 35 community sites in minority communities. Heart disease still kills nearly as many Americans as all other diseases combined. We have skin cancer prevention for youth, HIV/AIDS prevention for adolescents, violence prevention for adolescents in 15 high-risk Illinois high schools, smoking prevention which had reached over 100,000 Chicago area smokers, including youth. With the Cancer Institute, as you probably also heard at CDC, one in three Americans now living will have cancer. We have NCI funding on smoking cessation, communication in cancer prevention, evaluating the Morehouse Black Leadership Initiative in cancer, mammography, pap smears, training grants for minority researchers interested in careers in cancer control. We also have a lot of other NIH projects ranging from TB prevention and treatment to diabetes registries. We have the only brain tumor registry in the Nation which functions for the entire Nation. We have programs on ovarian cancer, birth outcomes, environmental pollution, and I could go on and on. We are a relatively small school. We also have six NIDA grants at the school. One of them has been singled out as demonstrating the effectiveness of AIDS and IV drug abuse interventions in preventing sero conversion and in helping drug abusers return to a more normal life. This has been picked up now as a local, State, and national initiative. In fact, at NIDA's request, I ran another workshop in your State, in Miami, in Spanish for Andean researchers working on drug abuse prevention with the University of Miami Medical Center people. We also have a maternal and child health training grant, preventative medicine residency, we have a NIOSH-funded education center, and we are the leading academic partner of Governor Edgar's Project Safe Illinois where we work with industry, labor, and Government to improve the health and safety of Illinois workers. We also have a Fogarty Center for research and training international and environmental health, and our faculty member, Doctor Daniel Rohorsheck was recently honored at the White House for his work on the Chernobyl incident. We also have sponsored a NATO advanced research workshop on public health consequences of environmental pollution. So we do support this committee's interest in increasing appropriations directed towards biomedical research. I wanted to give you these examples to show the multiplier effect that these funds have. They do not just do basic research, they work in our cities, they work in our counties, they work in our States, they work in our Nation, and they work internationally. I would like to conclude with an analogy made by C. Everett Koop where he said that ``clinical medicine was like rescuing people once they were in the raging river, and public health was on the riverbanks trying to keep them from falling in in the first place.'' Obviously, we need to work together. But the more people we can keep from falling in, the less we are going to spend in the raging river. Thank you very much. [The prepared statement of Susan Scrimshaw follows:] [Pages 753 - 761--The official Committee record contains additional material here.] Mr. Miller. Thank you very much. As you know, we did spend the day Monday at CDC and also Morehouse College of Medicine that afternoon, by the way, where they are starting a master's program in public health. One of the things we try to do is go out and see the programs. I did a fully day at the University of South Florida and they are very proud of their Public Health School because it is one of the few in the country. It is a relatively new school and so I was very impressed with what they offer there too. Thank you for your very fine testimony. We are going to have to take a short recess. I hate to do this again. I apologize for this but that vote messed things up very badly for us. We have three more witnesses waiting so we will get back as soon as we can. [Recess.] ---------- Wednesday, April 16, 1997. WITNESS JEANNE CARPENTER, EPILEPSY FOUNDATION OF AMERICA Mrs. Northup [assuming chair]. I would like to bring this hearing back to order so that we can complete this afternoon's agenda. I am Ann Northup. I am serving as chairman for the remainder of the hearing. The first witness I would like to call is Jeanne A. Carpenter, President-elect of the Epilepsy Foundation of America. Good afternoon, Jeanne. Ms. Carpenter. Good afternoon, Congresswoman. I am Jeanne Carpenter. I am appearing today in my capacity as President- elect of the Epilepsy Foundation of America. We appreciate the opportunity to testify in support of increased funding for the Epilepsy branch of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health. I want to thank you, Congresswoman Northup, as well as all the other members of the committee, and particularly Chairman Porter, for your support in demonstrating continued research funding for NIH. Of course, we urge your continuing support. EFA is the national voluntary health agency that works for people affected by seizures through research, education, advocacy, and service. EFA and its 70 affiliates throughout the United States represent the interests of the over 2,000,000 Americans with epilepsy. While EFA supports additional research in a broad number of areas that are important to people with epilepsy, including research on the ketogenic diet and on environmental triggers for photosensitivity, my comments today will focus on the need for increased medical research on issues confronting women with epilepsy. Epilepsy is a chronic condition that usually requires a lifetime of continual medical treatment and education. There currently is no cure for epilepsy. While many people with epilepsy are able to control their seizures with medication, it is not widely appreciated that approximately 500,000 individuals have intractable or uncontrolled seizures. The economic cost and the emotional toll for these individuals and their families is certainly devastating. I appear today before you as a woman with epilepsy who has been helped immeasurably by scientific and medical research. How- ever, I also represent the over one million American women with epilepsy who have uncertain futures as they move through the life cycle. Women like myself do not have answers on how seizures and medication will affect their health during adolescents, in family planning, in pregnancy, child birth, or menopause. We do not have answers because the research which can provide those answers has not been undertaken. While many epilepsy related issues are common to both men and women, women with epilepsy face very unique health issues and challenges in coping with their seizure disorders. Forexample, many women have reported EFA that they have been advised erroneously that they should not become pregnant if they have epilepsy. We know that hormonal changes at puberty, during pregnancy, during the menstrual cycle, and at menopause can affect women's seizures but the mechanism as to how this occurs is not clear. We know that there is an increased incidence of reproductive endocrine disorders in women with epilepsy but not how to prevent or treat them. We know fertility is decreased for many women with epilepsy but we do not know why. Women with epilepsy, their family members, their health care practitioners are all looking for answers, answers that additional research could provide. My term as president of EFA coincides with a kick-off of a special EFA initiative focusing on the unique challenges facing women with epilepsy. We are developing consumer and professional educational materials targeted to some of these issues. However, it is clear that additional Federal commitment to research in this and related areas must be undertaken if we are ever to fully understand all of the issues involved. EFA, in recognizing the urgency of these concerns, has assembled a panel of experts in the field to develop recommendations for additional research and professional education. Our written testimony provides more detail on the recommendations for additional research. The Epilepsy branch within the NINDS is vital to continuing the fight against epilepsy. We encourage NIH as a whole, and the NINDS in particular to play an important role in solving some of these research questions by sponsoring additional research addressing women's issues. It is our understanding that the Professional Judgement Budget for NIH and the NINDS calls for a 9 percent increase in funding in order to support what experts in the field believe is needed to support scientifically worthy research projects. We urge the subcommittee to provide that level of funding. Finally, I would like to mention a valuable program within the Centers for Disease Control, which has been mentioned several times this afternoon, that focuses on early detection and intervention in epilepsy. Only by providing the information and education will we reduce the stigma that still surrounds epilepsy. We urge your continuing support of this program. I appreciate the opportunity to testify here today. I will be happy to answer any questions you may have. [The prepared statement of Jeanne Carpenter follows:] [Pages 764 - 769--The official Committee record contains additional material here.] Mrs. Northup. Thank you. I think that our time is too short, but I appreciate your testimony. Thank you for coming before us. Ms. Carpenter. Thank you very much. ---------- Wednesday, April 16, 1997. WITNESS DANIEL ZINGALE, CHRISTINE LUBINSKI, AND JAVIER SALAZAR, AIDS ACTION COUNCIL Mrs. Northup. Next, we have Mr. Daniel Zingale, the Executive Director of the AIDS Action Council. Welcome, Mr. Zingale. Mr. Zingale. Thank you. Thank you for pronouncing my name correctly. Mrs. Northup. I had a little help. Mr. Zingale. Congresswoman Northup, I am Daniel Zingale, Executive Director of AIDS Action Council, the Washington voice for over 1,400 community-based AIDS service providers from across the country and the men, women, and children living with HIV and AIDS that they serve. I am joined by Christine Lubinski and Javier Salazar, also with AIDS Action Council. Our work is supported by membership dues and by individual donations. We are at a pivotal moment in the history of the AIDS epidemic. I am sure you are aware of the many news reports about the recent dramatic advances in the care and treatment of HIV disease. The good news is that last year, for the first time in the history of the epidemic, the number of people dying from AIDS decreased significantly--by 13 percent overall. This dramatic drop in AIDS deaths is attributable to a combination of factors; the development of improved treatments for battling both HIV and the opportunistic infections that accompany it, improving standards of care, and increased access to care for some Americans. The bad news is that this epidemic is far from over. While the overall number of AIDS deaths declined last year, the death rate for women with HIV disease actually increased by 3 percent, and death rates among people of color declined only nominally. These disparities highlight stark inequities in the availability of state-of-the-art health care that people with HIV and AIDS need to stay alive and healthy. To benefit from new drug therapies, people must have access to affordable, comprehensive medical and supportive services provided by well- trained providers who understand the needs of the communities they serve. To access medical care, people must have a stable home and vital enabling services, like child care, transportation, appropriate case management, and substance abuse treatment. The new drugs alone are not the answer. The unfortunate reality is that the new combination therapies with protease inhibitors do not work for everyone. We are still learning about the potential of these new treatments. We do not have the answers we need about why these treatments seem to produce dramatic health improvements for some people and not for others. We do not know whether the improvements we have seen will be sustained over time. Clearly, there is still an urgent need to invest in additional research, not only to answer these questions, but to develop even more effective treatments and, ultimately, to discover a vaccine and a cure. While the overall number of people dying from AIDS declined significantly last year, the number of people living with AIDS did not. Blacks, latinos, and women accounted for increasing proportions of new AIDS cases in 1996. Women accounted for an all-time high of 20 percent of AIDS cases. Tragically, the number of people newly infected with HIV is not declining. Over a decade into the epidemic, we face the grim fact that every hour two Americans under the age of 25 are contracting HIV. Far too many people are not learning of their HIV status until they are hospitalized with a major AIDS- related illness, too late to realize the full benefits of early intervention with the state-of-the-art therapies. Greater community-based education efforts and easier access to HIV counselling and voluntary anonymous testing are vital. The promising benefits of early intervention can only be realized through aggressive education efforts that encourage individuals to be tested for HIV so they can immediately be linked with comprehensive and coordinated systems of care. Of course, early intervention is not true prevention. It is far less expensive and more humane to prevent someone from becoming infected in the first place. We know what works-- community-based prevention programs that tell people the truth about AIDS, getting people off of drugs, and getting dirty needles off of our streets. Substance abuse treatment and the removal of barriers that now prevent local communities from implementing syringe exchange programs are essential parts of an overall HIV prevention strategy. Needle exchange programs are now recognized by over 65 percent of Americans as an effective HIV prevention measure, and they have repeatedly been proven to reduce HIV transmission and to save lives. Tough choices and wise investments by this committee have helped to bring about declining death rates today and an unprecedented sense of hope. If we invest in HIV prevention through CDC, in the care provided through Ryan White, and in the NIH to take us to the next level of research breakthroughs, we may be able to take pride in having helped to bring about a true end to this epidemic sooner than any of us believed possible. Thank you. [The prepared statement of Daniel Zingale follows:] [Pages 772 - 779--The official Committee record contains additional material here.] Mrs. Northup. Thank you, Mr. Zingale. Thank you for the work that you all do. I wish you the best. Mr. Zingale. Thank you. ---------- Wednesday, April 16, 1997. WITNESS DAN EIN, M.D., THE JOINT COUNCIL OF ALLERGY, ASTHMA AND IMMUNOLOGY Mrs. Northup. Finally, our last speaker this afternoon is Doctor Dan Ein. He is the President of the Joint Council of Allergy, Asthma and Immunology. Dr. Ein. Good afternoon, Congresswoman Northup. You also got my name right and I congratulate you. It almost never happens. I think having a short name is a problem. Mrs. Northup. I have a name that is often mispronounced, too. Dr. Ein. I am Doctor Daniel Ein, President-elect of the Joint Council of Allergy, Asthma and Clinical Immunology. I am also a practicing allergist in Washington, D.C. I have had an office in downtown D.C. for the past 25 years. My organization, the Joint Council, is a professional, non-profit organization. We have got 4,000 members who are both clinicians or clinicians and researchers. We provide care for the over 50,000,000 Americans who suffer from allergic diseases. The organization would like to express its appreciation, and I, as a practicing physician and allergist, would like to express my appreciation for the support your committee has given to the NIH over the years. We know it has been really hard with budgetary constraints and so on, but your increasing support has meant a great deal to us in our ability to fight allergic diseases. I am not going to read the testimony, but I would just like to talk to you about areas of concern that we have. Allergists are concerned with chronic sinus disease, with asthma, and other kinds of allergic diseases. They are very common. As I mentioned earlier, over 50,000,000 Americans suffer from these diseases. If we had more people in the room, I would venture to say a number of them could be potential patients of mine. These diseases can be very mild, from mild hay fever that requires only over-the-counter medication, to life-threatening illnesses, like asthma which can be a fatal disease, like allergic reactions to foods, antibiotics, and bee stings. Because of the kinds of research that the NIH has supported, we have gotten to learn a great deal about these diseases over the years and the treatments that I use these days bear no resemblance to the kinds of treatments that I had to use 25 years ago when I started in practice which were much, much less effective than our current treatments. I would like to talk about one particular program though, because the NIH is really on the front line in taking care of patients with asthma. You may have seen the health section of the Washington Post yesterday which has on the cover this adorable kid who is puffing on an inhaler. This highlights two things. One, that asthma is serious disease of childhood. Kids are about 40 percent more susceptible to asthma than the general population, and minority children in particular are susceptible. The other thing is the headline which says ``New Attack on Asthma. Doctors Now Recommend Early Aggressive Treatment.'' This article was triggered by a program that was set up by the National Heart, Lung, and Blood Institute about ten years ago to develop guidelines for the treatment of asthma. These guidelines have been disseminated widely throughout the country to practitioners, even managed care organizations send these out. I get these from the HMOs that I participate with. It is the ``gold standard'' by which we practice asthma treatment. Their new revisions just came out this past month. These are revisions that we have all been excited about and that have received wide attention and comment. To me, this demonstrates the broad reach of the NIH programs and how they really help those of us who practice on the front line. So, in summary, we have learned a lot but we have a lot more to learn. We appreciate your continued support. We would favor a 9 percent increase in the NIH budget. I thank you. [The prepared statement of Daniel Ein, M.D., follows:] [Pages 782 - 789--The official Committee record contains additional material here.] Mrs. Northup. Thank you for your testimony and thank you for your service. We all know that research budget is very important. We are looking for the money. Thank you. Dr. Ein. Thank you. Mrs. Northup. That concludes the testimony for this afternoon. The subcommittee stands adjourned until 10:00 a.m. tomorrow morning. Thank you. ---------- Thursday, April 17, 1997. WITNESSES DAVE KREPCHO, EXECUTIVE DIRECTOR, SOUTH FLORIDA BREAD FOOD BANK HON. WILLIAM LEHMAN, RETIRED U.S. CONGRESSMAN Mr. Dickey [assuming chair]. Before we begin, I would like to acknowledge a very special guest. Representative Lehman is here. How are you doing? [Applause.] Was this your committee? Mr. Lehman. No, I was next door. Mr. Dickey. Next door. All right. We are glad to have you and glad to see you. You are a wonderful addition anytime you come around. For this morning's hearing, I want to remind witnesses of two new provisions of the Rules of the House. In addition to their written statement, nongovernmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they or the entity they represent have received. If you have any questions concerning the applicability of this provision, or questions as to how to comply, please contact the committee staff. We also have a very full schedule of witnesses, and it will be my job--and that of others following me--to enforce the five-minute rule strictly. I am sorry for that, but it is just going to be necessary if we are going to hear everybody. All right, we start with Congressman Lehman, my friend. Mr. Lehman. I have two people with me today. The first is the Food Bank---- Mr. Dickey. The Food Bank? Mr. Lehman. Yes. Mr. Dickey. Okay. What is his name? Dave Krepcho. Okay. You each have five minutes. Be sure to speak into the microphone. Mr. Lehman. I will not need five minutes. Mr. Chairman, it is a privilege to be with you today, and you look very nice, Mr. Chairman. [Laughter.] Mr. Dickey. Thank you. Mr. Lehman. Tell Chairman Porter that I hope his back is soon better, and I hope to see him soon. Mr. Dickey. All right, I will do that. Mr. Lehman. I am a member of the Board of Directors of the Daily Bread Food Bank, and I would like to yield my time to Mr. Krepcho, who is the Executive Director of the Daily Bread Food Bank in Miami. He has an interesting program to present to this subcommittee, and at this time I would yield to David Krepcho. Mr. Dickey. You have five minutes. Mr. Krepcho. Thank you very much. Daily Bread Food Bank really appreciates the opportunity to present this idea. I am the Executive Director of the Daily Bread Food Bank in Miami, and we cover the area of Miami, Fort Lauderdale, and the West Palm Beach area. We are a nonprofit organization that collects surplus food and distributes it to charitable organizations that feed needy people in the South Florida area, and we are a member of the Second Harvest National Network of Food Banks. There are 181 of those across the country. The request is for funding of a demonstration project for an on-the-job training program, and the design is to bring people off the welfare rolls and help them become self- sufficient. It is based on a successful test pilot program that we did in Miami, and the request is for a 10-city demonstration project, 10 cities across the country, at approximately $200,000 per city. The need for this kind of project fills a very large demand as people are looking to get off of welfare. There are many, many people looking for jobs, and in South Florida alone, poverty has risen about 4 to 5 percent, according to the latest Census Bureau statistics, and in Miami alone there are about 50,000 people that will need to find jobs to receive their benefits, and there are only about 5,000 jobs available, according to a study. The design of the program works well, in that as not-for- profits are being asked to take up more of the slack, as some of the Government cutbacks are happening, we already have limited resources. This program provides us a source of labor, helps people learn basic job skills, and helps feed needy people in their communities. The not-for-profit environment is very suitable to bringing up people, before they go into a corporate world or private industry--the transition would be much smoother. There are some private companies that have tried it with some limited success, but we believe the not-for-profit world can work well. It is recommended that the 10 cities be used, half of them perhaps rural, half of them urban, just to give you a quick example of the test that we did in Miami. It helps empower unemployed individuals; it helps teach them the basic job skills; it helps leverage the existing resources of the Food Bank. For every dollar invested, we can show how enough food for 10 meals is distributed through this program. Mr. Dickey. Tell me what your administrative cost percentage is. Do you know? Mr. Krepcho. Our administration cost is 12 percent of total cost. Mr. Dickey. Not bad. Mr. Krepcho. We consider ourselves extremely efficient. Mr. Dickey. Much more so than the Federal Government. [Laughter.] Mr. Krepcho. We fill the need for the additional demand. We need the extra labor to sort through this donated food and operate our four warehouses, and it collaborates with other nonprofit organizations, Government bodies, and State educational institutions, it also provides a qualified labor pool to our very food donors, such as retailers like Winn-Dixie or Publix Supermarkets that run huge food warehouses. They are very open to the concept. The program description is in my written testimony. I won't go into detail on it, but it covers nine different areas in the curriculum, from safe food handling to inventory management---- Mr. Dickey. Go into safe food handling. How do you assure-- well, you only have 30 more seconds, but how do you assure safe food being handled? Mr. Krepcho. Safe food handling would be done through the Cooperative Extension Service, through a State university. They would teach people how to store food properly, refrigerate it properly, and the danger zones of handling food. They get certified on a course---- Mr. Dickey. But you do get excess food from other areas, don't you? Mr. Krepcho. Oh, we do. All of our food is donated. Mr. Dickey. So the perishables--you deal with perishables? Or you do not? Mr. Krepcho. Yes, sir, we do. Mr. Lehman. I think he said something about rice from Arkansas. Mr. Dickey. Rice from Arkansas. [Laughter.] You keep pounding that Arkansas thing, and I am going to start---- Mr. Krepcho. But all perishable foods are refrigerated at proper temperatures, or frozen, if they are frozen foods. Mr. Dickey. Right. Thank you, sir. Submit the rest for the record, if you would. Mr. Lehman. Mr. Chairman, can I have just half a minute? Mr. Dickey. Yes, sir. Mr. Lehman. I know welfare is a State-related program now, and perhaps if you could give us a grant, we could get a matching grant from the State of Florida, so they would be involved as well. So we could approach it from two angles. I want to thank you for your time. Mr. Dickey. Thank you. Thank you. You are going to stay, though, aren't you? Mr. Lehman. Yes. I will be right here. Mr. Dickey. Okay. You have got the next one. [The prepared statement of Dave Krepcho follows:] [Pages 794 - 800--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESSES MORRIS J.W. GAEBE, JOHNSON & WALES UNIVERSITY HON. WILLIAM LEHMAN, RETIRED U.S. CONGRESSMAN RICH TARANTINO BRENDA BASSETT Mr. Dickey. All right, this is Dr. Morris J.W. Gaebe, Chancellor--it is Chancellor of something; what is it? [Laughter.] Well, let us go to Brenda Bassett. Maybe I can get that. Brenda is National Sales Associate at Johnson & Wales University--oh, you are representing Johnson & Wales University. Mr. Gaebe. Yes, I am the Chancellor of Johnson & Wales University. Mr. Lehman. Mr. Chairman, before you start the testimony, I am on the Advisory Board for Johnson & Wales in Miami, and they are an institution in my old district that has done more for unemployment and job security than anything in my district. I would like to see that move on in this progressive area. Brenda Bassett's father-in-law, 50 years ago, was able to expand my business because he was Chairman of the First National Bank in Miami. Mr. Dickey. Car loans, I know. [Laughter.] He kept your reserves low, didn't he? [Laughter.] Mr. Lehman. Right. Mr. Dickey. Yes, sir, Chancellor. Mr. Gaebe. At Johnson & Wales we have designed a model culinary arts certificate program to train and to place welfare recipients in entry-level positions in the food service industry. As you probably know, the food service industry is the largest employer of people in the United States. The primary outcome will result in trained individuals becoming employed taxpayers, and they therefore will no longer be dependent on welfare and so forth. I would like to go over some of the high points of this program. It would be a Culinary Arts Certificate Program. It would last for nine months, and it can begin anytime because it is a self-contained educational unit. It is hands-on educational training, and the qualifications to enter it do not require a high school diploma, because we do not expect all of the people to be at that level of education. But once the participants get into it, we are going to give GED credits, so you can--in this program--earn a GED diploma. It is a pilot program, so we are asking for money to train 33 participants. Considering the background of these people, we are going to throw in a lot of other things besides the culinary program. For instance, daycare will be-- Mr. Dickey. Give me the amount, again, the amount and the number of students again, please. Mr. Gaebe. It is 33. Mr. Dickey. And how much is the amount of money? Mr. Gaebe. It is $575,000. Mr. Dickey. That is a small amount. Thank you. Mr. Gaebe. The daycare will be provided within these funds for children of families with dependent children. We will provide transportation to the classroom, and we will have a maximum of 20 students per faculty member. We will provide the placement. We have always had 100 percent placement of our graduates, and we feel that we can certainly place these people in jobs after they have finished the program. Mr. Lehman. And they stay there. Mr. Gaebe. They stay there, that is right. We are also going to have counseling and tutorial support, which is provided by the university to all of our students. It will include such things as nonviolence and crime and drug prevention workshops. There will be a lab operation every day from 4:00 to 10:00 p.m., or six hours per day, so for the program it will include 864 hours. We want to start with 33 people, and we anticipate that we can hold 90 percent, or that 30 of them will graduate. We have been doing this for many years in all kinds of different programs, so we have a pretty standard format for all of this. We estimate that 13 will be male, and 20 will probably be female. This is what we are looking at. There will be 28 that will be black, and 3 will be Hispanic. We are working in that area of Florida. The target groups will be AFDC recipients, the homeless, single heads of households, and economically disadvantaged. We will have community outreach and recruitment activity. The classes will meet Monday through Thursday, and we will have work opportunities available for them on Friday, Saturday, and Sunday, which is like an internship while they are working on it. Mr. Dickey. You have 30 seconds. Mr. Gaebe. Okay. Mr. Dickey. Could I ask you a question during your 30 seconds? Mr. Gaebe. Go right ahead. Mr. Dickey. Nine months license--what is it, a nine months certificate? Why is that? Mr. Gaebe. Well, nine months is usually a standard school year. Mr. Dickey. Okay. Mr. Gaebe. Thirty-six weeks is a school year. Mr. Dickey. Oh, that is how long it takes to get it? Mr. Gaebe. That is how long they will be in school. Mr. Dickey. Oh, I had misunderstood. I thought you said it expired at the end of nine months. There is a difference,is not there? Mr. Gaebe. They will be in school for one school year. Mr. Dickey. I think it is a wonderful program. Mr. Lehman. Mr. Chairman, once again, it is necessary to make this contingent on State matching funds, because welfare is a State program now. Mr. Dickey. Yes, sir. Ms. Bassett, you have five minutes. Ms. Bassett. No, I let the Chancellor speak for us. Mr. Dickey. Thank you. Mr. Gaebe. I had a couple other things---- Mr. Dickey. You have run out of time. [Laughter.] I am so sorry. We have got to move on. Mr. Lehman. If you can not make your point in five minutes, you are out of here. [Laughter.] Mr. Dickey. I would like to come see you all sometime. Ms. Bassett. We would love to have you. Mr. Dickey. All right. Thank you so much. I am sorry we had to rush you off. [The prepared statement of J.W. Gaebe follows:] [Pages 804 - 814--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESS ALLAN JENSEN, M.D., AMERICAN ACADEMY OF OPHTHALMOLOGY Mr. Dickey. How are you, sir? Welcome, Dr. Jensen. You have five minutes. Dr. Jensen. Thank you, Mr. Chairman. I am Allan Jensen. I am an Associate Professor at Hopkins, and also the Senior Secretary for Advocacy of the American Academy of Ophthalmology. We represent approximately 20,000 eye physicians and surgeons whose patients have benefitted from the advances in eye care made possible by the National Institutes of Health and the National Eye Institute. I would like to speak in support of the NEI and the 9 percent increase for 1998 that the Ad Hoc Group for Medical Research Funding has proposed for NIH overall. It is estimated that 80 million Americans suffer from some vision-threatening disorder, and more than 10 million have experienced irreversible loss of sight. This translates out to $22 billion in direct medical costs and $16 billion in indirect costs as a result of ocular disease. The personal toll brought about by vision loss is immeasurable. These costs are expected to continue to rise as increasing longevity raises our exposure to diseases associated with aging, thus the need to develop effective, cost-sensitive therapies for vision disorders is becoming more acute. In the time that I have I would like to focus on one of these disorders, and that is diabetic retinopathy. Diabetic retinopathy is the leading cause of blindness in Americans under the age of 60. It affects approximately half of the Nation's 16 million diabetics, and its impact is likely to become greater as diabetic patients live longer with their disease. NEI clinical trials have shown the effectiveness of laser therapy for the treatment of diabetic retinopathy, and it is projected that if all eligible diabetic patients received appropriate treatment, over $167 million could be saved each year in disability benefits alone. The proliferation of abnormal new blood vessels of the retina remains one of the most serious threats to vision in diabetic patients. The identification of a growth factor which appears to modulate new vessel proliferation represents a giant step toward the development of therapies to prevent this complication. However, further study is needed to identify the mechanisms by which disordered glucose metabolism has such a profound effect on the retinal vessels. In addition, diabetic retinopathy is but one of many retinal disorders characterized by loss of vascular integrity and uncontrolled growth of new vessels. New insights into the causes of its development and progression may help us better understand and treat other retinal diseases, such as sickle cell retinopathy and retinopathy of prematurity. There is more information in my printed testimony, and I appreciate the opportunity to testify on behalf of the Academy. I will be glad to answer any questions. Mr. Dickey. I have no questions, but thank you for yielding some time. Dr. Jensen. Thank you. [The prepared statement of Allan Jenson, M.D., follows:] [Pages 817 - 827--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESS WILLIAM L. KISSICK, M.D., COLLEGE OF PHYSICIANS OF PHILADELPHIA Mr. Dickey. Dr. William Kissick, Executive Director of the College of Physicians of Philadelphia. Welcome to D.C. Dr. Kissick. Thank you very much, Mr. Chairman. Mr. Dickey. You have five minutes. Dr. Kissick. Good morning, Mr. Chairman. I am Dr. William Kissick. I appear today on behalf of the College of Physicians of Philadelphia, where I have been a Fellow since 1969. I am a Professor in the School of Medicine in the Wharton School of the University of Pennsylvania. Prior to my appointment at the university in 1968, I spent seven years in the Federal Government, in the then-Department of HEW, where I helped to draft Medicare. Mr. Dickey. You might say you survived seven years. [Laughter.] Dr. Kissick. The college was founded in 1787, and is the oldest medical society in the United States. Today our membership consists of approximately 2,000 distinguished physicians in Pennsylvania, New Jersey, and Delaware, as well as nonresident members throughout the Nation. Three of the elements which have been characteristic of the college's activities from our founding are community service, continuing education for physicians, and increasingly important in today's society, health education for the public. Today our members are greatly concerned about the growing communication gap which divides the public andproviders of health care. We believe that seeking to educate and empower consumers with physician- based health information in nonclinical settings provides an important opportunity to bridge the gap. The college opened the C. Everett Koop Community Health Information Center to help consumers who want to take a more active role in the management of their health and that of their families. Visitors to the center have access to on-line health data bases, CD ROM, video cassettes, and a special library of more than 500 books written specifically for patients and health care consumers. The college appreciates this subcommittee's continuing interest in the Koop Center. We are pleased that the Centers for Disease Control is working to evaluate the Koop Center's contributions to consumer knowledge about health care. The college has also been a pioneer in the area of medical ethics, a popular topic during the past several years, with issues ranging from organ donation to assisted suicide to the more recent cloning of a sheep in Scotland. As advances in biomedical research accelerate, the legal, medical, and theological communities have been struggling to help the public understand the implications of these issues. The College of Physicians of Philadelphia was the first medical society in America to develop medical ethics standards. The college's standards were subsequently adopted by the American Medical Association when it was formed in 1847. Last month, the AMA hosted a conference in Philadelphia to celebrate its 150th anniversary and the physicians community's commitment to medical ethics. The college is currently collaborating with the University of Pennsylvania Center for Bioethics on a project on the history of medical ethics. They will conduct conferences that link medical ethics of the past to the bioethical problems of the present and the future to make knowledge on the subject of biomedical ethics accessible to professionals, scholars, the press, and the public. We ask that this subcommittee provide sufficient funding to the Office of Public Health History in the Department of Health and Human Services to enable that office to collaborate on this important initiative. We also ask that this subcommittee provide sufficient support to the CDC for their ongoing work in the area of infectious diseases. As Dr. Joshua Lederberg, a Nobel Laureate in 1958, maintains, there exists an increasing emerging threat of, in his words, ``microbial catastrophe.'' The college is committed to working with CDC to develop a unique exhibit and public education program to improve public understanding of infectious disease. We look forward to working with CDC and this subcommittee on this extremely important public policy issue. Through one of the world's leading historical medical libraries, and the strength of our consumer outreach programs, the college looks forward to continuing to assist the public and policymakers to make sound choices and judgments related to health care. We hope that this subcommittee will continue to look to the college as a resource for information on how previous generations addressed issues similar to those that we face today, and to our efforts to share with the public important information on how to lead healthier lives. Thank you, Mr. Chairman, for the opportunity to present the college's testimony. Mr. Dickey. Thank you, Dr. Kissick. [The prepared statement of William Kissick follows:] [Pages 830 - 837--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESS ALLEN W. ANDERSON, AMERICAN ASSOCIATION OF DENTAL SCHOOLS Mr. Dickey. Next, we have Dr. Allen W. Anderson, Dean of the College of Dentistry, University of Illinois at Chicago, representing the American Association of Dental Schools. I read pretty well, don't I? [Laughter.] How you doing? Mr. Anderson. Thank you, Mr. Chairman. Mr. Dickey. You are a dentist? Mr. Anderson. That is correct. Mr. Dickey. Okay. Try to make it painless, will you? [Laughter.] Mr. Anderson. I certainly will. You can help us, too. [Laughter.] Mr. Dickey. You are right. We have the same reputation. [Laughter.] Mr. Anderson. I am Allen Anderson, a pediatric dentist and the Dean of the College of Dentistry at the University of Illinois at Chicago. On behalf of the American Association of Dental Schools, I am pleased to have the opportunity to present our fiscal year 1998 funding recommendations for health professions training and research programs especially important to dental education. Mr. Chairman, at a time when many decry the shortage of primary care health professionals and search for programs that will attract generalists, we are pleased to present a cost- effective primary care success story. General Dentistry Residency programs provide graduates with primary care training; 87 percent of those students who receive general dentistry training remain in primary care practice. Dentists who have had the benefit of this advanced residency training can serve a broad range of patient needs and make fewer referrals to dental specialists. This is especially important in rural and underserved urban areas. For instance, our general dentistry residents at the University of Illinois at Chicago deliver care in a variety of settings to special populations, including mentally disabled individuals in Chicago's El Valor sheltered workshop, elderly and medically compromised patients at the University of Illinois Hospital, residents in nursing homes in the Chicago area, and low-income minority patients in our college dental clinics. I am unable to imagine why, when the Administration seeks to promote primary care education and expand access to health care. The fiscal year 1998 budget proposal groups general dentistry with seven other Title VII programs in a cluster, and slashes the overall funding level by more than 55 percent. If implemented, the Administration's budget would severely jeopardize all current General Dentistry Residency programs and any potential new grantees, in addition to the oral health care access special populations now receive as a benefit of this training program. General dentistry is a primary care success story and deserves continued and increased Federal support. We urge the subcommittee to fully fund this cost-effective and proven program at $6 million in fiscal year 1998. The Ryan White HIV/AIDS Dental Reimbursement Program accomplishes two major Federal objectives in the fight against AIDS: support for oral health services for patients of limited means, and 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 partnership between the Federal Government and dental education programs, in which the Government partially offsets the costs these programs incur by serving a disproportionate share of indigent AIDS patients. Illinois dental education programs provide twice the amount of uncompensated care to people living with HIV/AIDS than what is reimbursed through this program. Unreimbursed costs will continue to rise as the number of HIV patients increases, while they will live longer as a result of the tremendous strides we have made in both the research and treatment of this disease. AADS recommends a very modest $1.5 million increase for this program in fiscal year 1998 to ensure the continuationof this critical service and allow for increased numbers of HIV/AIDS patients to be served. We also strongly support the National Health Service Corps Scholarship and Loan Forgiveness Programs. Last year, the Congress recognized the need to increase dental participation in the National Health Service Corps. Mr. Dickey. You have 30 seconds. Mr. Anderson. We are most appreciative of this support and want to continue to work with you toward this end. I would also urge your continued strong support for the Title VII programs that play a critical role in our ability to recruit and retain disadvantaged students in dentistry. The modest Federal investment in the disadvantaged student initiatives enabled 21 disadvantages students to be enrolled at the University of Illinois at Chicago College of Dentistry and pursue careers in oral health care. Ninety percent of the students who benefit from these programs at our institution continue to deliver care to underserved populations when they enter professional practice. Finally, Mr. Chairman, on behalf of AADS and the University of Illinois Medical Center I want to express our gratitude for the leadership role this subcommittee has taken in biomedical research. We endorse the testimony of the American Association for Dental Research regarding priorities and funding of the National Institute of Dental Research in fiscal year 1998. Thank you, Mr. Chairman. Mr. Dickey. Thank you, sir. [The prepared statement of Allen Anderson follows:] [Pages 840 - 848--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESS PAUL KIMMELMAN, AMERICAN ASSOCIATION OF SCHOOL ADMINISTRATORS Mr. Dickey. Next we have Dr. Paul Kimmelman, Superintendent of West Northfield School in Northbrook, Illinois, but more importantly, a constituent of our Chairman, John Porter, John Edward Porter. We are glad to have you here. You are representing the American Association of School Administrators? Mr. Kimmelman. Yes, sir. Thank you for the opportunity for me to be here today and to speak on behalf of the 15,000-plus members of the American Association of School Administrators. Mr. Dickey. You have five minutes. Mr. Kimmelman. We would also like to extend our appreciation for the unprecedented $3.5 billion increase from the Appropriations Committee that education received last year. Mr. Dickey. I wonder if that had anything to do with where you are from? [Laughter.] Mr. Kimmelman. I would like to think that it was partially, but more importantly, to help children. It is a little different today in that Congressman Porter, your Committee Chairman, and I have had numerous discussions on education. So rather than insult the intelligence of the committee, I don't choose to read our prepared testimony today, but rather just react with some feelings about education and try to represent what we believe is extremely important in the future. Our organization holds very deeply-held beliefs in a high priority for Title I funding and IDEA funding in the future. Let me say to you that we were somewhat disappointed with the President's budget proposal to you with respect to Title I in that it did not seek an increase in funding. I would like to suggest to you that I have been a superintendent in a school district, an urban district, that was under a Federal desegregation order and had numerous disadvantaged children. I am currently superintendent in a school district that I think most people would recognize as being more affluent, but still having some disadvantaged children. I would like to say to you, with respect to Title I, that in my heart I believe that it is a very good program. I believe that it is meeting the needs of children and it is helping those who have significant disadvantages to achieve at a higher standard. Mr. Dickey. Would you acknowledge that there are some abuses of that program? Mr. Kimmelman. I can not specify that there are abuses, but my next statement would have been to Congressman Porter, that the fact is that there is one side that has researchers that say the program works; there is another side that says that the program does not work. What I think is that this committee-- which I would have stated in my conclusion--in my own opinion, holds the power to bring about the necessary reforms that should make the program a world-class program. Mr. Dickey. Do you mind if I can ask you some questions? Mr. Kimmelman. Not at all. Mr. Dickey. If we do the status quo and we keep doing the same thing, is anything going to change? If we just keep increasing the amount of money and keep honoring your commitment, are we going to have any changes in the classroom? That is what I want to know. Mr. Kimmelman. I believe that there is a positive reform environment in education, and if you continue to just increase funds, I would be concerned that the types of changes that many people are talking about might not in fact be made. Mr. Dickey. Good. Mr. Kimmelman. You know, we had the honor about a month and a half ago of a visit from the President who came to my school district. I coordinate the First In The World Consortium as well, and---- Mr. Dickey. He had Rhodes Scholars? Mr. Kimmelman. Well, we don't exactly have Rhodes Scholars; we have future Rhodes Scholars. [Laughter.] But what we have done is formed a consortium of 20 school districts that took the Third International Math and Science Study, and the results of that study at our 8th grade level demonstrated that the students in those districts were performing among the very best in the world in math---- Mr. Dickey. Let me ask you this. That is well known, but could you have done that without acquiring discipline in the classroom? Mr. Kimmelman. Discipline is one factor. Mr. Dickey. See, the difficulty that we are having in rural America is that we can't get control of the classrooms. Our teachers are telling us that the first 15 minutes are at risk every time, just trying to keep people sitting down and shutting up. Mr. Kimmelman. You have thousands---- Mr. Dickey. I only have 30 more seconds. [Laughter.] Mr. Kimmelman. You have thousands of teachers in this country who are working very hard. I am married to one; I am the father of one. You have the power to provide funds and programs like Title VI that will help those of us who are on the front line every day with professional staff development that will help teachers get that discipline---- Mr. Dickey. Can you help me? Would you give me some type of letter or memo about how we can change the approach on discipline, sometime? Mr. Kimmelman. I certainly can do that. Mr. Kimmelman. If you can give me 30 more seconds to talk about one of our priorities. Mr. Dickey. I cannot give you 30 more seconds. How about that? [Laughter.] Mr. Kimmelman. That is not good. Mr. Dickey. I know, but that is discipline, though. [Laughter.] Mr. Kimmelman. But I am an unruly superintendent. [Laughter.] Mr. Dickey. All right. Okay. Thank you so much. Mr. Kimmelman. Thank you. [The prepared statement of Paul Kimmelman follows:] [Pages 851 - 859--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESSES LORI DICKEY, JOHN AND DENISE ANDERSON, SUDDEN INFANT DEATH SYNDROME ALLIANCE Mr. Dickey. Lori Dickey? Where is she? A very good name. [Laughter.] John and Denise Anderson are accompanying Lori Dickey, representing the Sudden Infant Death Syndrome Alliance. You have five minutes. Who will be doing the talking? Mr. Anderson. We will start. Good morning. Mr. Dickey. Good morning to you. Mr. Anderson. My name is John Anderson. I am here with my wife, Denise. We are from Newark, New Jersey, and we want to thank you for this opportunity to talk to you about this issue. Mr. Dickey. Thank you for coming. Mr. Anderson. We are not scientists; we are not medical professionals. We are, simply put, parents, and this issue has, unfortunately, touched our lives. September 29th of last year was probably the best day of our lives in terms of having our new son born, Jonathan Cyrus; five weeks later, unfortunately, he was taken from us as a result of SIDS. This tragedy is very close to us, and we are here to help, to advise you that this research is critical. I will let my wife share with you our experience, and we will go from there. Ms. Anderson. Monday, November 4th started out as any other day, except that my five-year old was sick with a cold, so he stayed home with me and the baby. I had nursed the baby and put him down for his nap. When I went to check on him, me and my son found that he had stopped breathing. I had called 911 and frantically tried to revive him. He was taken to the hospital. The police and the ambulance came to the home, and I was not allowed to even call my husband yet until we got a pronouncement of death. So, I stayed alone with that until I called my husband. Once he arrived home, I just collapsed in his arms. Mr. Dickey. What was your son's name? Ms. Anderson. Jonathan Cyrus Anderson. Mr. Anderson. With that--getting a call, I am in the midst of work, focused as most business folks are, as you are right now, I broke down. And when this happens to families it is tragic because it is devastating. There is no way around it. And if it was not for the grace of God and our faith in God, we would not be sitting here today. Mr. Dickey. Amen. Mr. Anderson. With that said, a lot has been done as a result of past contributions from the Government---- Mr. Dickey. Well, we are making progress, are not we? Mr. Anderson. Yes. In fact, I was just about to say that. A lot has been done, and in fact, because of the introduction of the back-to-sleep campaign, a few years back---- Mr. Dickey. I do not have any problems doing that for myself. I just go back to sleep. [Laughter.] Go ahead. Mr. Anderson [continuing]. There has been a drop of 30 percent from that program alone. Mr. Dickey. I thought it was 20, so that is excellent. I am sure sorry you all had to have your loss, though. Mr. Anderson. But it is not enough, because as we sit here--and the numbers, as I understand them, we are talking 5,000 to 7,000 children per year dying. Mr. Dickey. We are still in that 70 percent, then? Mr. Anderson. Yes. Mr. Dickey. Okay. Mr. Anderson. As we talk, within this hour, another child is being lost, another family is being devastated as we were. So I just urge you to continue your support for the program. Mr. Dickey. Thank you. Ms. Anderson. I just wanted to close by saying that in memory of my son, Jonathan Cyrus Anderson, and on behalf of all SIDS parents who have suffered the loss of their children, and all expectant mothers who want to realize the hopes and dreams of the child they carry, I make an impassioned plea to Congress to continue funding SIDS research. I leave you with a quote from Schindler's List: ``Whoever saves one life saves the world entire.'' Thank you for allowing us to share our testimony today. Mr. Dickey. Thank you for your contribution. Ms. Dickey. In the interest of time I think I am just going to talk to you briefly. I am Lori Dickey. I am here today as the mother of two sons. My first son died in 1994, also of SIDS. I had just gone back to work and I was coming to pick him up from the babysitter's, having dropped him off real quickly in the morning--I had an 8:00 o'clock meeting that I did not want to be late for--and I did not even tell him I loved him. I had no idea I would never see him again. Mr. Dickey. How old was he? Ms. Dickey. A hundred days, three months and nine days old. I came around the corner and I saw these police cars out in front of the house. I panicked and, God forgive me, I hoped it was someone else's child; but when I got out of the car and they were asking if I was Mrs. Dickey, I knew that there was something wrong with my son. I could hear the babysitter screaming incoherently inside the house. They took me to the hospital, and as I walked down the corridor Icould see the nurses and other attendants just scattering. No one really wanted to talk to me. Finally, they told me that my son had stopped breathing. After that, I found it a little difficult to breathe, and as long as I live I will never forget going into that room and seeing my tiny little baby, gray and still and cold and lifeless on that table. My husband and I, after we got over our grief, did a lot of work with the Arizona Affiliate of the SIDS Alliance. As was already mentioned, there has been a drop in rates due to the back-to-sleep campaign; but after we got our courage up to read the autopsy report, my son was sleeping on his back. He had absolutely no known risk factors at all, and yet he still died. I think the only way to answer that and to prevent any more SIDS deaths is to continue the research that has been started. Mr. Dickey. Thank you, ma'am. Ms. Dickey. Thank you very much. Mr. Dickey. Your testimony is riveting. [The prepared statement of Lori Dickey, John and Denise Anderson follows:] [Pages 863 - 871--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESS BARBARA D. BOYAN, AMERICAN ASSOCIATION FOR DENTAL RESEARCH Mr. Dickey. Next, we would like to hear from Dr. Barbara Boyan, a constituent of Congressman Bonilla; is that correct? Ms. Boyan. That is correct. Mr. Dickey. Just state who you are representing, if you will, please. You have five minutes. Ms. Boyan. Mr. Chairman and members of the committee, I am Dr. Barbara Boyan, and I am a Professor and Director of Orthopaedic Research, as well as being Director of an industry/ university cooperative research center at the University of Texas Health Science Center at San Antonio. I am here representing the American Association for Dental Research, and in support of the fiscal year 1998 for the National Institute of Dental Research, and the Agency for Health Care Policy and Research. As I start into my testimony, I would like to state that I am the proud recipient of three large grants from the NIH myself, and I am the mentor of two training grants. I think that speaks to what it is that I would like to share with you. Dr. Anderson has already talked about ``why dentistry,'' and now I would like to talk about ``why dental research.'' I think you heard clearly that I am not a professor in the Dental School; I am a professor in the Medical School. I am a Professor of Orthopaedics, which seems a very far distance away from dentistry, but it is not really. And that is really what dental research is all about. The modern era of dental research is about teeth; it is about oral health care; it is about prevention and treatment and periodontal disease, but I think more importantly, it is about the whole body. As we have learned more about dentistry, we understand that if people do not have good dentition, they do not have good nutrition; and if they do not have good nutrition, they do not have good health. Orthopaedics also has taken a lot from dentistry. The dental research that goes on in biomaterials is the best in the world. It is a place where we are number one, and no one would argue with that. It has led to a whole new industry in material science and in tissue engineering, about which the U.S. is number one. There is no other country that comes even close to where we stand in that field, both in research as well as in new technologies and new companies that are being formed and the new treatments for the future, the ``bionic people.'' The use of titanium from the jet industry has come directly out of dentistry for dental implants, and gone on to form orthopaedic implants that are used for limb regeneration. Another way that the Dental Institute has used its money wisely has been in the forefront of technology transfer. Of the National Institutes of Health, the Dental Institute has taken a step forward to be the leader at the National Institutes of Health in technology transfer and the development of new technology. Some of that has grown naturally from the fact that dental research has led to new devices, but it also is an attitude at the Dental Research Institute that has led its leadership to inform people that not only do we take money from the Government to do research, but we are meant to give something back in the form of new technology. They have gone out of their way to encourage scientists to leverage the dollars that come from the Government with industry partnerships and partnerships with foundations so that this technology moves more quickly. I would think that if someone was to sit down and do numbers, they would probably find that more small companies have grown out of research funded from the National Institute of Dental Research than probably any of the other institutes, certainly per dollar. Mr. Dickey. You have 30 seconds. Ms. Boyan. So the dollars are spent wisely. What we are asking for is an 8.5 percent increase in those dollars, up to a budget that is a little over $212 million for the National Institute of Dental Research, and $160 million for the Agency for Health Care Policy and Research. The cost to the U.S. for dental care in 1995 alone was $45.8 billion. I would put forward to you that the $212 million that we are asking for is money well spent. It will be leveraged well, and the country will get its value for its dollar. Thank you. [The prepared statement of Barbara Boyan follows:] [Pages 874 - 883--The official Committee record contains additional material here.] Mr. Dickey. Thank you, ma'am, for your good work. There are several votes and other activities that will be occurring on the floor of the House. We are now 10 minutes away from one; therefore we will stand in recess. Afternoon Session Mrs. Northup [assuming chair]. This afternoon's session of the Subcommittee on Labor, Health and Human Services, and Education Appropriations will come to order. As we begin, I would like to just make a few comments. I want to remind the witnesses that two new provisions to the Rules of the House are in order. In addition to their written statements, non-Governmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they or the entity they represent have received. If you have any questions about the applicability of this provision or questions as to how it applies, please contact the subcommittee staff. We also have a very full hearing schedule. It is up to me to keep it on schedule. So each witness is asked to hold to the five minute provisions. I will tap on the microphone with thirty seconds left, not to interrupt you but to give you a chance to conclude your remarks and summarize any remaining statements you wish to make. ---------- Thursday, April 17, 1997. WITNESS THOMAS P. STOSSEL, M.D., THE AMERICAN SOCIETY OF HEMATOLOGY Mrs. Northup. Our first witness is Doctor Thomas Stossel, President of the American Society of Hematology. Mr. Stossel, welcome. Dr. Stossel. Thank you, Madam Chairman. I appreciate your time. I am President of the American Society of Hematology. Our society consists of over 8,000 members, which includes physicians who treat patients with blood diseases and also researchers who study the blood and its disorders. I am here this afternoon on behalf of the society to honor this subcommittee for its commitment to Federal support of biomedical research, and to endorse your wish that this support be flexible and broad. Hematologists are passionate about research. The reason is that they treat patients at the outer limits of medical knowledge, patients with fatal diseases like leukemia. They also know that what they can do for their patients, which is considerable, is based on the fruits of previous research and they also appreciate that this research has to be broad-based. Now, how do they know that? Well, for example, hematologists take care of patients with sickle cell anemia. As I am sure you know, sickle cell anemia is a complicated disorder, many complications, including painful episodes. Recently, we have acquired two new treatments for this disorder. One is a drug called hydroxyurea, which decreasesthe frequency of those painful attacks, and the other is bone marrow transplantation, which actually cures some patients with this disease. Both of these treatments were developed by hematologists researching cures for diseases unrelated to sickle cell anemia. This happens all the time in research and it is always unexpected. Hematologists are aware of the importance of broad-based research support for hematology, but we are also proud of the fact that our research has benefitted patients with other diseases. Another example. There is a substance called erythropoietin. Erythropoietin helps you to make red blood cells. If you do not have enough red blood cells, you are anemic. Erythropoietin was discovered by hematologists and is currently manufactured by the American biotechnology industry. The major clinical impact of erythropoietin has been for kidney disease, and patients with wrecked kidneys, because normally erythropoietin is made in the kidney. Prior to the availability of erythropoietin, patients with failed kidneys had to have multiple blood transfusions and they do not need it anymore. Speaking of blood transfusions, hematologists developed the technology of blood transfusion, and safe and effective blood transfusion cuts across all of medical care. In my written testimony, I have included other examples where hematology research has impacted on AIDS, on cardiovascular disease. You are running behind, so I would not speak any more about that. Let me simply say that it is really easy to get blood to do research on--you just stick somebody. For that reason, hematology research has contributed an enormous amount to understanding of how cells work. Cells are the fundamental units of life, so the way that cells grow, the way they move, the way they socialize, and the way they die can mean the difference between health and disease. For example, in hematology, the premature death of blood cells can cause a very serious disease called aplastic anemia. When it happens in the brain, by the same token, premature cell death is responsible for Alzheimer's disease and Parkinson's disease. So what you learn about one cell is applicable to another. This committee sees a lot of requests for specific disease budgets. What I hope with this testimony to do is to illustrate, with hematology as an example, that broad-based research support leads to specific treatments for specific diseases. We request that you continue to advocate for broad- based support for biomedical research, and, particularly, we hope you will do everything you can to get a 9 percent increase for the National Institutes of Health for fiscal year 1998. I thank you for your time. Mrs. Northup. Thank you. I hope we can, too. Thank you for your testimony. [The prepared statement of Thomas Stossel and Robert Hadin follows:] [Pages 886 - 895--The official Committee record contains additional material here.] ---------- Thursday, April 17, 1997. WITNESS MARGE DRUGAY, TRI-COUNCIL FOR NURSING Mrs. Northup. The next presenter is Marge Drugay. She is the Director of Older Adult Services with the Synergon Health System. I believe you are here representing the Council for Nursing, is that right? Ms. Drugay. Tri-Council of Nursing. Mrs. Northup. Okay. Welcome. Ms. Drugay. Good afternoon, Madam Chair. My name is Marge Drugay. I am a clinical nurse specialist and the Director of Older Adult Services for Synergon Health System in Oak Park, Illinois. I am here on behalf of the Tri-Council for Nursing, a body comprised of four major national nursing organizations-- the American Association of Colleges of Nursing, the American Nurses Association, the American Organization of Nurse Executives, and the National League for Nursing. In the midst of unprecedented changes in our health care delivery system and increasing complexity care, sound Federal funding for nursing education programs, including advanced practice nurses and clinical specialists and research, has never been more critical. Last year, this committee took a hard look at cost versus benefit of Federal support for these programs and provided an increase in funding. It remains abundantly clear that there continues to be a lack of primary care providers to address the ever-evolving needs of our citizens. Unfortunately, the President's fiscal year 1998 budget proposed a drastic cut in funding for these programs. We are appalled that the Administration could make such an irresponsible recommendation, especially in light of last year's overwhelming support and expressed need for primary care practitioners. Today, I am here on behalf of the Tri-Council for Nursing to share with you why such an extreme cut in funding for nursing is unsound budget strategy. Opportunities for health promotion and disease prevention abound across the lifespan. Advanced practice nurses are educated and ready to use every teachable moment in working with individuals in all cultures to avail themselves of those opportunities. My particular specialty is gerontology. We are poised on the edge of a demographic explosion in aging. The current population of adults 65 and over is approximately 33 million people. That number is expected to double by 2030 and we are not prepared with enough primary care providers to meet the demands of this population, especially the fastest growing subset of those who are over 85 years of age. Nursing research has shown us that prevention works. We are applying that research in clinical practice. In our particular program, advanced practice nurses have developed a wellness model geriatric health risk appraisal based on the principals of the Department of Health and Human Services Put Prevention Into Practice and Healthy People 2000 initiatives. In working with older adults, we use the age window between 55 and 65 to help adults assume personal responsibility for changing their lifestyle and improving their health status. In little more than a year, clinical nurse specialists have seen over 35 individuals in this innovative program, and positive health outcomes are emerging. These individuals now demonstrate lower serum cholesterol levels, have undertaken intentional weight loss, and improved their nutritional status. They have stopped smoking, increased their physical activity, and adopted preventive behaviors such as cancer screenings, immunizations, and using seatbelts. Our educational programs have reached over 2,000 older adults in 1996-1997. We welcome the opportunity for a site visit from any member of this subcommittee. This is only one example of the impact that advanced practice nursing, primary care, and nursing research can have in improving the health of our citizens. We appreciate the support that this subcommittee has consistently demonstrated for the Nurse Education Act programs. The Tri-Council recommends a fiscal year 1998 funding level of $65.3 million for these programs which have specific categories covering education, special projects, traineeships, and a loan repayment program for shortage area service. The Tri-Council also strongly supports funding for theNational Institute of Nursing Research at the National Institutes of Health. NINR provides research to improve nursing practice and the delivery of quality health care. This research is essential to the development of improvements in data and clinical effectiveness and patient outcomes, information which is vital to improving the quality of health care. The Tri-Council recommends a fiscal year 1998 appropriation of $61 million, and would welcome funding at the NINR's Professional Judgement Recommendation of 9 percent over fiscal year 1997. Madam Chair, the changing health care system creates a demand for nurses, particularly advanced practice nurses, throughout the continuum of care. Better access to primary care and preventive services will lessen the demand for costly acute care visits and interventions. Tri-Council believes that this support provided by the Nurse Education Act and NINR has been invaluable in providing programs that are essential to the nursing care needs of our citizens and should be continued. Thank you. [The prepared statement of Marge Drugay follows:] [Pages 898 - 906--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. ---------- Thursday, April 17, 1997. WITNESS CAROLYN JOHNSON, VOICE FOR ADOPTION Mrs. Northup. Next, I want to call Carolyn Johnson, Director of the National Adoption Center. She is representing the Voice for Adoption. Ms. Johnson. Good afternoon. Thank you for the opportunity to testify on behalf of Voice for Adoption. We represent over 30 national and State adoption organizations focused on U.S. children with special needs. We are asking for full funding for the Adoption Opportunities Act of $20 million. I am an adoptive parent of three children with special needs. I am the founder of the National Adoption Center, and serve on the Board of Voice for Adoption. We really have two goals; one is to find homes for the children, and the second is to support families once they adopt. According to Health and Human Services, there are 100,000 children in our country that need to be adopted, about 27,000 are legally free, and the remainder are going through the court process to have their parental rights terminated. They are school-aged, they are brothers and sisters who need to stay together, they are disabled children, and many of them have minority backgrounds. The Adoption Opportunities Act is the only Federal program that supports innovative services to get these children out of foster care. The dollars are well-spent. A study has shown us that for every child who is adopted, leaves foster care system, even if the family adopts with adoption assistance, $40,000 is saved. I would like to tell you about just a couple of the programs that are funded. The National Adoption Center operates the national adoption exchange. Last year, 35,000 families contacted us for adoption information. Based on our research, 1,800 of those families will go on to adopt. We work extensively with Dave Thomas and the Wendy's Restaurants to raise public awareness. For the last three years, Maury Povich has featured children on his show who are waiting to be adopted. We have received 33,000 phone calls from those three shows. The first children to be adopted were five siblings from Kentucky and they went to the State of Florida. We also run an Internet sight called ``Faces of Adoption.'' It is an eighteen month old program. There are about 300 children featured now, 21 of them have been placed. Stephen was the first; 15 years old, cerebral palsy, mental retardation, legal blindness. A family in Anchorage, Alaska went to the library, asked the librarian to help them get on the Internet, and he now is in the home and he is legally adopted. That grant of $300,000 saved $840,000 is foster care payments. We are very excited about the President's adoption initiative Adoption 2002, about the work that is occurring in the House and the Senate to reform adoption and foster care legislation. Without additional funding though for the innovative services, I think we might be right back where we started--more children free for adoption but not enough services to get them out and to support the families who take on these very, very challenging children. Thank you. [The prepared statement of Carolyn Johnson follows:] [Pages 909 - 918--The official Committee record contains additional material here.] Mrs. Northup. Thank you. Two of my six children are high- risk minority adopted children. They are beloved and have meant the world to our family. Ms. Johnson. I didn't know that. Mrs. Northup. So, I have great respect for what you do, and certainly hope this committee will do all it can to help your organization. Ms. Johnson. Thank you very much. Mrs. Northup. Thank you. ---------- Thursday, April 17, 1997. WITNESS ROBERT R. RICH, M.D., THE AMERICAN ASSOCIATION OF IMMUNOLOGISTS Mrs. Northup. Our next presenter is Doctor Robert Rich. He is the Chairman of the American Association of Immunologists. Welcome, Doctor Rich. Dr. Rich. Thank you very much, Madam Chairman. It is my pleasure to be here today on behalf of the American Association of Immunologists to talk to you about the 1998 appropriation for the National Institutes of Health. Two years ago, I testified before this subcommittee and at that time I told you that our peer-review system had broken down due to the inadequate support that the NIH was receiving, that success rates for grants had fallen to the 10 percentile level. Now, thanks to the generous support provided by this subcommittee, I can report to you happily that this peer-review system is again working the way it should, so that now we are funding excellent research and that most of the outstanding proposals are actually receiving the money necessary to carry them forward. With respect to the fiscal year 1998 budget, the American Association of Immunologists joins the biomedical research community in asking you to seriously consider the NIH Directors Professional Judgement Budget. There are several other issues, however, that I would also like to thank the subcommittee for, issues that we have called to its attention over the past couple of years and to which we have been gratified by its responses. Last year, we talked about the importance of development of a program of bridge funding to help investigators who are facing lapses in funding to more efficiently continue their research programs. In December of 1996, the NIH held a conference on this subject because of the interest of this subcommittee in the subject. I can tell you now that many of the institutes at NIH are, in fact, trying out different approaches to solve this essential problem. Secondly, the Chairman of the Committee, Mr. Porter, last year became interested in something that we had been concerned about; namely, the Small Business Innovation Research program, or SBIR. It has been our feeling that this program has been a generally inefficient use of NIH funds over the years. It was argued that the 2.5 percent set aside was a trivial amount that we should not be concerned with. I would remind the subcommittee that, in fact, that amount of money, which now is about $230 million a year, is greater than the budget of six of NIH Institutes, including the Institutes for Deafness, Alcoholism, and Genome Research, and in fact is approximately the same size as the National Institute of Arthritis, Muscular Skeletal, and Skin Diseases. Finally, Mr. Miller and Mr. Porter were both interested in our concerns with regard to duplicative and unnecessary rules and regulations that govern much of the research that is carried out, and called for the General Accounting Office tolook into this issue and look at the costs. The GAO did not disagree with our contention that in fact there may be hundreds of millions of dollars at stake here, but they eventually concluded, after studying the problem for some time, that it was simply too complicated for them to come to a conclusion about. I would submit to you, Madam Chairman, that would not have been the response of a private sector agency. We would respectfully suggest that you might consider looking into asking someone in the private sector to look into this issue again. One would not want to fund such a thing out of NIH research project grants. However, the Department of HHS has a program of administrative taps which now exceeds $90 million a year, and we believe that these administrative taps, which were intended originally for evaluation and assessment of the efficiency of their programs, would be a ready place to find the funding to really look into the waste of these hundreds of millions of dollars. Finally, the AAI is very concerned about one aspect of the Administration's proposal for fiscal year 1998, and that is the reduction in funding that they have proposed for the National Center for Research Resources (NCRR). The NCRR funds many critically important programs that support the infrastructure of science, such as the General Clinical Research program which supports clinical investigators across the country, the Shared Instrumentation Grant program which enables investigators throughout the country to get together to buy expensive instrumentation. There is one program, in particular, that I would like to point out, and that is the Biomedical Research Support program. This program remains authorized but, in fact, has not had an appropriation since fiscal year 1992. It is a program that provides block grants to medical centers that enable them, at the local level, to support new research programs, beginning investigators, and institutional bridge funding. We believe that in a time when managed care and cost competition have increasingly impinged upon the flexibility of medical centers, the BRSG program is of vital importance. Finally, I can tell you that the American Association of Immunologists is committed, with this committee, to seeing that you get not only the best, but the most research for every appropriated dollar. We thank you very much again for the generous support that you have provided. [The prepared statement of Robert Rich, M.D., follows:] [Pages 921 - 932--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. ---------- Thursday, April 17, 1997. WITNESS JOSEPH PERKINS, AMERICAN ASSOCIATION OF RETIRED PERSONS Mrs. Northup. The next presenter is Joseph Perkins. He is the President-elect of AARP. Welcome, Mr. Perkins. Mr. Perkins. Good afternoon, Madam Chair. Yes, I do represent the American Association of Retired Persons. We want to thank you for this opportunity to comment on various programs which benefit older Americans, especially the low- income and minority elderly. Of particular significance in this regard, the Older Americans Act and the Low-Income Home Energy Assistance Program, better known as LIHEAP. These initiatives play key roles in helping needy Americans preserve their dignity and independence and ability to stay within their own homes. Since its enactment over 30 years ago, the Older Americans Act has enabled millions of older citizens, especially those with disabilities, to remain independent and productive. Many of these individuals would have ended up in expensive institutional settings were it not for the home and community- based services provided by the landmark legislation. At a minimum, the Association recommends that funding next year for Older Americans Act programs be maintained at current levels. To the extent additional resources become available, we urge that an inflation adjustment be provided. We also recommend that additional resources be made available to implement the Administration's proposed $4.7 million increase in home delivered meals next year. The Elderly Meals Program has not only improved the nutrition of older persons, but it has also helped to decrease their social isolation as well. The Administration on Aging reports that in fiscal year 1995 more than 240 million meals were served under these programs. A critical part of the Older Americans Act, and one that is very partial to myself, is the Senior Community Service Employment Program, which we call SCSEP. As one of the national sponsors of this activity, the Association has first-hand knowledge regarding its effectiveness. SCSEP employment program has made a real difference in the lives of many unemployed low- income older Americans by providing part-time jobs and useful community service. Many of the nutrition programs and other services for seniors as well as important programs serving the broader community, such as library services and day care centers that are dependent on work provided by older persons through the Senior Community Service Employment Program. Compared with younger workers, once unemployed, older workers tend to be jobless longer and are likely to earn less when, and if, they are hired. The minimum wage increase, which became effective last October represents the first one of its kind in more than five years. It has meant an awful lot to these older workers. With regard to the Low-Income Home Energy Assistance Program (LIHEAP), the LIHEAP, at a minimum, the Association supports the Administration's recommended funding levels. LIHEAP is important to all of its beneficiaries, but none more so than low-income older persons. Housing, health care, energy costs, all of these factors add to the stress of living on a tight budget. Many LIHEAP recipients are among the working poor or older persons who do not receive any other public assistance. For these individuals LIHEAP is a vital measure of last resort. Because they are more likely to live in older, less well- insulated homes, older persons, particularly the elderly minority poor, have a heightened risk of hypothermia. Funding for LIHEAP has declined dramatically over the past several years. Only one out of five eligible elderly households is now able to receive some assistance. Any reduction below the Administration's recommended level would have a devastating impact on countless needy families for whom the program has become a lifeline. We want to thank you for this opportunity to present our views. We trust the recommendations in our complete statement will receive the subcommittee's favorable consideration. I thank you again, Madam Chair. [The prepared statement of Joseph Perkins follows:] [Pages 935 - 944--The official Committee record contains additional material here.] Mrs. Northup. Thank you. ---------- Thursday, April 17, 1997. WITNESS MANUEL CERQUEIRA, M.D., THE AMERICAN COLLEGE OF CARDIOLOGY Mrs. Northup. Our next presenter is Doctor Manuel Cerqueira, Assistant Chief of Cardiology and Professor at the Georgetown University Medical Center. Doctor Cerqueira is here today in behalf of the American College of Cardiology. Dr. Cerqueira. Thank you very much, Madam Chairman. My name is Manuel Cerqueira. I am representing the American College of Cardiology, which is a 23-member professional medical society and teaching institution based in Bethesda. I am here to urge the continued support for the National Heart, Lung, and Blood Institution (NHLBI), the institution which is charged with enhancing the prevention, diagnosis, and treatment of cardiovascular disease. This institution has been the major impetus for the miraculous advances that have been made in the treatment as well as the prevention of cardiovascular disease. Many of the major health accomplishments in the past decade are a direct result of the efforts of the institute. As we approach the next century, our Nation's dedication toward cardiovascular research will not only inevitably be to more effective treatments and better technology, but towards an increased knowledge of the prevention of cardiovascular diseases. With the support of the NHLBI clinical trials, researchers are beginning to demonstrate the effectiveness of pharmaceuticals such as beta blockers and ace inhibitors in treating people with congestive heart failure. Congestive heart failure is a condition that effects about 4.8 million Americans. It is the fastest growing group within cardiovascular diseases. It is going to be very cost prohibitive in the future. The ability to treat these people effectively will decrease the total cost of medical care. In addition, the institute is investing in children's medical research. The institute is presently considering randomized controlled trials to document the efficiency as well as the safety of various therapeutics for cardiovascular diseases in children which, even though they are used commonly, have not been shown to prove effective. Many of the risk factors that we see in older Americans may have a role in children, but they may not. It is very important, before we start advocating lowering cholesterol, that we know that we are definitely going to have an effect. The NHLBI is also expanding its research priorities through increased clinical trials involving women and minorities. These accomplishments of the NHLBI are encouraging. The simple fact remains that, despite all of these improvements, cardiovascular disease remains the number one killer of men and women in the United States, currently accounting for 42 percent of all the deaths that occur in the United States. I can say, with the utmost confidence, that each of us here can personally relate to or identify with a relative, friend, or co-worker who has experienced the devastating realities of heart disease. There is approximately 55 million Americans, or 1 in 5 people in the population, who have some form of cardiovascular problem. It is for this reason that it is very important to continue to support the NHLBI for the 1998 fiscal year. The American College of Cardiology is very supportive of this effort. As a physician, I realize that we are operating in a much more belt-tightening health care environment. It is very important to put fiscal restraints on what we do as well as on the Federal budget. Nevertheless, medical research has to be viewed as an investment that is going to yield substantial returns. These returns are, in saved lives, as well as wiser use of health care expenditures. The total economic cost of heart disease in 1997 was $167 billion. In 1995, Medicare paid more than $29 billion for the treatment of heart disease. That is more than what Medicare paid for arthritis, cancer, kidney, and liver disease combined. So most of our Medicare dollars is going to cardiovascular problems. The question that a lot of people ask is that while the results of medical research may result in improved technology and innovation, they may also rise the cost of medical care. The declining rates of disability among the elderly proves that medical research can be cost-effective, and it has the potential to produce substantial Medicare as well as Medicaid savings. We really need to continue to do a fair amount of work in this area. Our risk factor modification program as well as our biomedical engineering, where we can actually take genes that will allow the body to produce medications, will end up reducing the cost of medical care. Blood pressure, diabetes, and the use of preventive measures in cardiology need to be effectively promoted. In the cafeteria, you are still selling cigarettes, and a lot of the Members are still taking the train between the Rayburn Building and the Capitol. It is much more effective to get people to walk. This kind of heightened awareness needs to be increased. For that reason, the American College of Cardiology is very supportive of the continued full funding of the NHLBI budget, because it really will result in cost savings for the American public. Thank you. [The prepared statement of Manuel Cerqueira, M.D., follows:] [Pages 947 - 955--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much, Doctor Cerqueira. I agree with you about the cigarettes. Unfortunately, the bells ring too fast for us to walk all the way to the floor. Thank you. ---------- Thursday, April 17, 1997. WITNESS PAUL E. STUBBS, AMERICAN DENTAL ASSOCIATION Mrs. Northup. Next, Doctor Paul Stubbs. He is with the American Dental Association (ADA). Welcome. Dr. Stubbs. Thank you, Madam Chairman. I am Doctor Paul Stubbs, Chairman of the Council on Access Prevention and their professional relations of the American Dental Association, and a practicing dentist in Austin, Texas. I represent 140,000 members of the American Dental Association. On behalf of the American Dental Association, I would like to thank you for this opportunity to testify today. The association thanks Chairman Porter for his steadfast support last year for the Division of Oral Health within the Centers for Disease Control. The division is the primary Federal program responsible for dental disease prevention and assurance that dental care is provided in disease-free environment. The importance of these activities is obvious when realizing that in a single year over a half billion dental visits occur. Unfortunately, more than one person dies an hour from oral and pharyngeal cancer, and 17 percent of the children aged two to four already have dental decay. The ADA recommends a $2 million increase for the Division so that the Nation's dentists can continue to provide the highest standard of dental care in the world. The ADA would like to thank the committee for its support of funding for increased fluoridation efforts. We are very pleased to note that the Maternal and Child Health (MCH) Agency responded favorably to the committee's request last year and made funding available to the States with fluoridation rates below 25 percent. We hope that MCH will be able to do more in 1998. The association also thanks Representative Bonilla for his leadership in securing funding for the Health Professions Program last year. While many Health Professions programs are important to dentists and to dental students, I will only highlight the General Dentistry Program in my oral statement. Dentists gain valuable clinical experience while in the program and, at the same time, they provide needed dental care to underserved populations and communities. In fact, the General Dentistry Program has been successful in meeting the Federal goal of increasing access to primary care, not only because it serves as a dental care safety net for the elderly, the disabled, and medically compromised, but because many graduates of the program locate their permanent practices in the underserved areas. The ADA recommends that $6 million be appropriated for this program in fiscal year 1998. The Ryan White HIV/AIDS Dental Reimbursement Program delivers vitally needed oral health care to people living with HIV and AIDS. In fiscal year 1996, 102 institutions participated, serving over 70,000 patients. Because of their impaired immune systems, people living with HIV/AIDS suffer ahigh incidence of oral disease which, if untreated, can lead to significant pain and oral infections resulting in difficulty in eating, taking medications, and subsequent excessive weight loss. Receiving a prompt diagnosis and appropriate treatment for these oral conditions is often difficult for individuals because dental services are neither reimbursed under Medicare nor seldom covered by Medicaid. This program can prevent such serious and expensive health complication. The association requests $9 million for the HIV/AIDS Dental Reimbursement Program. The National Institute of Dental Research supports more than 80 percent of the total dental research conducted in the Nation. The research has produced great breakthroughs which save Americans $4 billion in dental care each year. However, more research is needed. For example, the most common cranial facial defect is the cleft lip, affecting 1 in 500 births. Lifetime cost for the repair of clefts and treatment for associated speech and hearing and other problems are estimated to be $100,000 per patient. In addition, oral and related cancers affect 42,000 Americans annually, resulting in 9,000 deaths each year. Future savings depends on current research like that being conducted at four new oral cancer research centers funded by NIDR. Continued adequate funding of NIDR is necessary and cost- effective. Therefore, the ADA recommends that NIDR be funded at $212 million for the fiscal year 1998. Thank you, Madam Chairman. I appreciate your thoughtful consideration for these American Dental Association recommendations. [The prepared statement of Paul E. Stubbs follows:] [Pages 958 - 966--The official Committee record contains additional material here.] Mrs. Northup. Thank you. ---------- Thursday, April 17, 1997. WITNESS STANLEY B. PECK, AMERICAN DENTAL HYGIENISTS' ASSOCIATION Mrs. Northup. Now we have Mr. Stanley Peck. He is the Executive Director of the American Dental Hygienists Association. Welcome, Mr. Peck. Mr. Peck. Thank you, Madam Chair. On behalf of the American Dental Hygienists' Association (ADHA), I want to thank you for the opportunity to testify before you and the committee today. I am Stanley Peck, ADHA's Executive Director. ADHA is the largest national organization representing the professional interests of the approximately 100,000 dental hygienists across the country. Dental hygienists feel strongly that good oral health is fundamental to total health. Oral diseases are still among the most common chronic health problems in the United States. Fifty percent of Americans do not receive regular oral health care. Clearly, the Nation's oral health must be further improved, and history shows that research at the National Institute of Dental Research (NIDR) has made significant advancements in this area. NIDR's work in dental research has not only resulted in better oral health for the Nation, it has also helped curb increases in oral health care costs. Americans save nearly $4 billion annually in dental bills because of advances in dental research and an increased emphasis on preventive oral health care. Continued research at NIDR is critical to the future of prevention. Therefore, ADHA joins with other dental groups to recommend $213 million for NIDR. Because oral health is a vital part of total health, ADHA also urges this subcommittee and all Members of Congress, to seize every opportunity to increase access to cost-effective preventive oral health services such as those provided by dental hygienists. Further, any effort to revamp the present Medicaid and Medicare health care delivery systems or to advance children's health legislation should embody as one of its goals increased access to preventive oral health care services. With regard to Medicaid, for example, HHS reported last year that, despite the provision for oral health benefits under Medicaid EPSDT program, only 1 in 5 eligible Medicaid children actually received preventive oral health services. Clearly, we must do better. Dental hygienists can, and should, play a larger role in the delivery of oral health services to underserved populations, including Medicaid-eligible children. Accordingly, ADHA is pleased with the significant level of interest and commitment in this Congress to increase health insurance coverage among our Nation's 10 million uninsured children, including the 3 million children eligible for, but not receiving, Medicaid benefits. All Americans should have access to affordable quality health care services, including oral health care services. One way to increase access to oral health care is through the inclusion of dental sealants and fluoride in any definition of childhood immunizations. While research to develop a vaccine against tooth decay continues, we can today effectively guard against tooth decay, which is an infectious, transmissible disease, with the combined use of dental sealants and fluoride. Dental sealants and fluoride protect children against tooth decay just as vaccines immunize against certain medical diseases. ADHA would also like to lend its support to the Division of Oral Health within the Centers for Disease Control. The Division of Oral Health provides a national focus for the control and prevention of oral diseases such as dental caries, oral cancer, and periodontal disease. ADHA joins the Association of Schools of Allied Health Professions in supporting the important work of Title VII of the Public Health Service Act and recommends full funding for Allied Health Project Grants and Allied Health Advanced Training. ADHA also wishes to take this opportunity to support the Food and Drug Administration's regulations governing the sale and distribution of nicotine-containing cigarettes and smokeless tobacco products to children and adolescents. Allowing the FDA to regulate tobacco use and sales will help to prevent tobacco addiction, resulting morbidity, and mortality. With regard to the Department of Labor, ADHA believes that the Occupational Safety and Health Administration (OSHA) has an important role to play in promoting employee safety in the workplace. ADHA urges the subcommittee to appropriate monies such that OSHA will be able to promote employee safety in the workplace, including the dental hygiene workplace. In closing, the members of ADHA appreciate the important contributions this subcommittee has made in improving the quality and availability of oral health services throughout the country. ADHA is committed to working with this subcommittee and all Members of Congress to improve the Nation's oral health, a vital part of total health. Thank you for the opportunity to submit our views. [The prepared statement of Stanley Peck follows:] [Pages 969 - 975--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. ---------- Thursday, April 17, 1997. WITNESS KIMBERLY KENNEY, CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME ASSOCIATION Mrs. Northup. Next, we have Kimberly Kenney, the Executive Director of the Chronic Fatigue and Immune Dysfunction Syndrome Association. Welcome. I want to apologize on behalf of the Chairman. Due to illness, he is unable to be here this afternoon, but he did want to send his regards. Ms. Kenney. I understand. Thank you. I appreciate that. Thank you, Madam Chairman, for the opportunity to appear before the subcommittee today. My name is Kimberly Kenney. I am the Executive Director of the CFIDS Association of America. CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome or CFS. CFIDS is an illness for which there is no known cause or cure. It is a serious, complex illness characterized by bone- crushing fatigue, persistent flu-like symptoms, intractable pain, and profound cognitive deficits. These symptoms are often episodic and unpredictable in their severity and duration. CFIDS is frequently misdiagnosed because it closely resembles other disorders, including multiple sclerosis, lyme disease, lupus, and post-polio syndrome. Conservative estimates, based on the CDC definition of CFIDS, place the number of U.S. adults with CFIDS at 500,000. Children also get CFIDS, but adequate studies of the prevalence of pediatric CFIDS have not yet been conducted. I am here today to share with you both the good and the bad news about our fight against CFIDS. The good news is that we have made progress over the past year in research and in the effort to bring better coordination and accountability to the Government's response to CFIDS. The bad news is that this progress is not yet translated into advances that affect the individual patients who have watched their former healthy lives be erased by this devastating disease. Allow me to highlight five major accomplishments of the past year that underscore the value of continued Federal investment in these activities. Thanks to the direction provided by this committee, Mrs. Northup, last year Secretary Shalala signed the charter for the Chronic Fatigue Syndrome Coordinating Committee. Our hope is for better communication and information exchange and increased accountability. I am honored to report that Secretary Shalala has invited me to serve on this committee. On the scientific front, Doctor Robert Suhadolnik of Temple University has discovered, with rich funding from the NIH, a new enzyme in CFIDS patients that may lead to a diagnostic marker. Last summer, eight NIH institutes issued a joint program announcement on CFS outlining 32 areas of promising study. Last August, the CDC assembled a peer review group, of which I was one member. Its recommendations for future direction at CDC were highlighted in the appropriations conference report. And finally, on September 18, HHS will sponsor the first satellite program about CFIDS for health care providers. These achievements and others outlined, in my written testimony, have been facilitated through significant, though comparatively small, combined Federal investment of $13.7 million. Despite these advances, there are five important areas in which progress has not occurred as we had hoped. For example, although funding for NIH increased last year by $819.6 million over fiscal year 1996, NIH funding for CFIDS has remained relatively level. However, we know that interest and activity in CFIDS research is growing. The CFIDS Association has experienced a four-fold increase in the number of dollars requested for projects deemed meritorious by our scientific advisory committee. The NIH program announcement will also generate more worthy proposals to NIH. Without adequate funding, researchers will be unable to pursue promising studies and current research efforts will lose momentum. This cannot be allowed to happen. The association requests that Congress appropriate an additional $10 million to NIH specifically for CFIDS research, most of which should be directed to extramural grants focused on promising areas of biomedical research. The association is concerned that the cross-institute partnership demonstrated by last year's program announcement noticeably did not include participation by the National Institute on Child Health and Human Development. We ask that the committee include report language requesting a special program announcement dedicated to study all facets of pediatric CFIDS. At CDC, promising research is not being published in a timely manner, and disturbing trends, such as increased rates of CFIDS among nurses, minority populations, and mothers and their children are not being addressed. The association requests an additional $5 million for CDC to carry out these important CFIDS-related projects. For patients who cannot continue working due to the physical and cognitive limitations imposed by CFIDS, the process of applying for Social Security disability benefits regularly takes two years to complete and is successful only 14 percent of the time, half the national average for all other disabilities. Despite this committee's requests over the last three years, SSA has not yet established a CFIDS advisory committee to review the current medical standards and investigate training and information resource needs. We are encouraged by very recent meetings with the Office of Disability to examine obstacles to benefits for persons with CFIDS, and we ask the committee to express its strong support for continuation. Finally, Madam Chairman, what we hear most from people with CFIDS is that health care professionals are woefully uneducated about the disease. The association requests $500,000 for HRSA to conduct a national pilot project to educate health care providers about CFIDS through its area health education center program. On behalf of the association's 23,000 members, I wish to thank the committee for the support that has brought about much of the progress over the past year. Your commitment to the issue has been a beacon of hope for persons with CFIDS, and the CFIDS-related report language in the fiscal year 1997 appropriations bill was greatly appreciated. More work remains to be done. With your continued interest and support, fiscal year 1998 will also provide much progress. Thank you very much. [The prepared statement of Kimberly Kenney follows.] [Pages 979 - 982--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. That concludes the first section of testimony. We are going to recess until 2:00 when we begin the next round of testimony. Thank you very much for the participation. [Recess.] Mr. Wicker [assuming chair]. The hearing will come to order. And as we begin this afternoon's hearing, I want to remind witnesses of two new provisions in the rules of the House. In addition to their written statements, non-Governmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they or the entity they represent have received. If you have any questions concerning the applicability of these provisions or how to comply, please contact the subcommittee staff. We also have a very full schedule of witnesses and I have a very strict time keeper to my right. We will enforce the five minute rule very strictly. At this point, it is my pleasure to recognize my good friend and colleague, Ms. Pelosi, who will introduce our first witness. Ms. Pelosi. Thank you very much, Mr. Chairman. I appreciate that very much. ---------- Thursday, April 17, 1997. WITNESS ARTHUR J. AMMANN, M.D., AMERICAN FOUNDATION FOR AIDS RESEARCH Ms. Pelosi. Mr. Chairman, I am very pleased to introduce Dr. Arthur Ammann, President of the American Foundation for AIDS Research, to present his testimony here today. I have long respected Dr. Ammann's work. I first became acquainted with his work years ago when he was in my office with Elizabeth Glazer on the issue of pediatric AIDS. I know that he has made a very valuable contribution in that arena. He comes before us, though, as a pediatrician and an advocate for the research at the National Institutes of Health. I will not take any more time, because we are all eager to hear his testimony. Welcome, Dr. Ammann. Mr. Wicker. Dr. Ammann, we are delighted to have you, and you may now proceed. Dr. Ammann. Mr. Wicker and Ms. Pelosi, thank you very much. Members of the committee, I am delighted to appear before you. I am, as has been stated, Dr. Ammann, President of the American Foundation for AIDS Research. I am, by training, a pediatric immunologist, and prior to joining AmFAR I was Chairman of the Board of the Pediatric AIDS Foundation, directing their research program. I spent seven years at Genentech, a biotechnology company, performing research on an AIDS vaccine. I spent 14 years at the University of California performing clinical research. I might say that at notime in my career was I challenged so greatly and seemingly so impossibly than when we first recognized the emergency of a new disease and epidemic in the 1980s. The devastating impact of HIV as we now know that epidemic to be on individuals and their families, which I first saw in my very first patient, an infant diagnosed in 1982, continues to this day. I believe that because of the wise and sound investments in funding for NIH and the scientific community which NIH represents and most importantly, the progress that has been made, we now have treatments which can slow or reverse the devastating effects of this disease. This year in particular, we have seen a dramatic impact of anti-retroviral therapy on the course of HIV infection. We believe, many of us, that this will be a disease that will soon become a medically controllable condition. For me, one of the most remarkable advances, and one that Ms. Pelosi I think recognizes, because we have seen it in San Francisco as well, is the advance in treatment of HIV infected pregnant women. We have gone from 2,000 infected infants per year in 1994 to an estimated fewer than 500, a remarkable achievement and certainly a very dramatic advance in research. The benefits for AIDS research are evident far beyond the new therapies to treat HIV infected people. They extend to men, women, and children with other chronic to life threatening diseases. Basic and clinical research in AIDS, I believe, is providing insight into auto-immune, immune function, infectious diseases, cancerous diseases, the causes, the treatments, and impacting upon countless lives. Even the new drugs that we have for AIDS are now being studied extensively, as protease inhibitors, to look at osteoporosis and cardiovascular disease, to limit the damage that occurs there. I think importantly, the drugs that have been tested in the AIDS patients for opportunistic infection and proven to be efficacious are now widely used for other diseases where immunosuppression occurs: cancer and bone marrow transplant, renal transplant. So the benefit has extended way beyond the area of AIDS. However, given these advances, I am disturbed by recent suggestions that simple mathematical division could be used to determine research budgets for specific diseases. We must not fall prey to pitting one disease against another. As a pediatrician, I know that these mathematical formulas would adversely affect our Nation's children the most. This is the area that I have worked in for several decades. The numbers of children are small and the diseases will always be small, and through these formulas, they would not receive the funding that they need. Throughout the history of medicine, we have chosen to put emphasis on specific diseases, for example, polio, until we obtained a cure. Today, in spite of the discovery and new treatments for HIV, we are looking at a global epidemic that totally affects about 30 million individuals. So, I believe we cannot depart from any endeavor to control any infectious disease, including HIV, until we have either a cure or a vaccine. This was true for polio, it was true for smallpox, and it must be true for HIV-AIDS. This is why AmFAR stands with other advocates for NIH in support of a 9 percent increase for NIH in the upcoming fiscal year. This requested increase, which reflects the professional judgment of the NIH scientists, represents the wisest investment in the future health of American people. I think the multidisciplinary nature of AIDS requires that we look at what is being done across all institutes. We appreciate what this committee has done in supporting the Office of AIDS Research. I have seen in the last several weeks first-hand the interaction between different NIH institutes, investigators from different disciplines to solve the problem within AIDS. It is what the OAR should be doing and it is what the OAR is doing, and it is doing it very effectively. The OAR must have the resources and the budget authority necessary to lead the Federal research initiative in AIDS. We urge this committee in this year's bill to continue to support the OAR and to maintain and hopefully strengthen its authority. This committee has proven that it is committed to a vigorous Federal research effort. And for that, you have our sincere gratitude. We have made extraordinary progress. We see it around us, we see it in the health of our American people. We look forward to working with you and your staff to ensure that progress made against AIDS continues. Thank you again for this opportunity. And I would welcome any questions you might have. [The prepared statement of Arthur Ammann, M.D., follows:] [Pages 986 - 993--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Dr. Ammann. Does my colleague from California have some follow-up comments or questions? Ms. Pelosi. Mr. Chairman, thank you very much. I do. I want to once again thank Dr. Ammann for very valuable testimony, both what he presented here today and in his written statement for the record. I appreciate what you said about the consolidated OAR approach and the other statements that you have made about the importance of research at the NIH. In your written statement, Dr. Ammann, you talk about the moral imperative, and I agree, the moral imperative we have to take every step to lower the rate of HIV infection among drug users, their sexual partners and children. And that requires increasing the availability of drug treatment, increasing access to sterile needles through changes in Federal, State, and local laws, and the implementation of a needle exchange program. This is a very dramatic step. I know that there are some major scientific studies that have shown the success of these programs. Could you elaborate on them for us here? Dr. Ammann. The American Foundation for AIDS was one of the first institutions supporting active research in the benefits or detriments of needle exchange programs. We have found, and through the research of others, we now believe that there is a very strong scientific basis for supporting the use of clean needles as a method of reducing HIV transmission. We know that there have been some strong statements that have come out, Dr. Varmus, after looking at the scientific evidence, has supported this, feeling that this is something that is scientifically sound to do. The National Institutes of Health has had a consensus statement, the National Academy of Science, the AMA. There is very strong support from a scientific perspective. From my own personal view, I would like to see everything done that we can do to prevent HIV transmission. We know that one of the major sources of HIV in mothers that is transmitted to their infants through pregnancy is from HIV that comes from a contaminated needle. It is the needle that carries the virus. Providing a clean needle interrupts that transmission. And we believe it is a moral imperative to do something quickly about that. Ms. Pelosi. In those studies, is there any evidence that the needle exchange program has led to increased drug use by exchange clients or in the wider community? Dr. Ammann. The weight of the evidence is that there is no increase in drug use following a needle exchange program. Many of the people who enter those programs also enter counseling programs in terms of drug abuse itself. Ms. Pelosi. So there is a link between, an effective link to the drug treatment program? Dr. Ammann. Yes, and I think that is one of the additional points of the effectiveness. Certainly, to interrupt HIV is the primary reason, but it also provides a link for counseling and further therapy. It is a terrible sentence for an HIV infected individual, in terms of the number of drugs and the treatments that involve. For a drug addict, I think dealing with an HIV infection in addition to their problem is something that just is not acceptable. Ms. Pelosi. Thank you, Dr. Ammann, very much. Thank you, Mr. Chairman. Mr. Wicker. Thank you, Ms. Pelosi, and thank you, Dr. Ammann. ---------- Thursday, April 17, 1997. WITNESS JACK LAVERY, LUPUS FOUNDATION OF AMERICA Mr. Wicker. It is now my distinct privilege to introduce and recognize my colleague from Florida, Ms. Carrie Meek, a member of this committee, though not a member of this subcommittee, who is our guest today and will introduce our next witness. Ms. Meek. Thank you very much, Mr. Chairman. I want to thank this committee for everything they have done in the past for our fight against lupus. I think every year since I have been here, for three terms, I have come to this committee and they have listened. And many times, they have helped. And I want you to know, I appreciate it. As you know today, I have the privilege of introducing a very distinguished gentleman who is Chairman of the Board of the Lupus Foundation. As you know, we work very closely with the Lupus Foundation. It has been very responsible in terms of trying to help us advance the cause of a cure for lupus. We really want NIH to find a cure for lupus. I think that with the kind of funding that is necessary and the kind of public scrutiny, public help that we need, we can find it. We have before us today Mr. Lavery. Mr. Lavery is sort of a unique person, in that he does all of the work with the Board of the Lupus Foundation. Of course, he is a working person. He is Vice President, Senior Vice President of Merrill Lynch. And he has had a very distinguished career. He has split his time between his job, his work with Merrill Lynch, and he certainly is very much committed to finding a cure for lupus. Not only is he concerned about finding a cure, but being sure that doctors and researchers and the scientific community understands how to diagnose lupus. It is sort of a silent killer, Mr. Chairman. Before you know it, it is on you. And it debilitates the person. And it debilitates young people. I lost a sister to lupus. And of course, many young people and many middle aged, particularly women, get the lupus disease. It becomes very chronic, lasts for a very long time. So I am sure the victims of lupus across the country will be happy today that Mr. Lavery is here, and members of the Lupus Foundation, to come before the committee and make an appeal for funds for research and development in lupus. Thank you very much, Mr. Chairman. Mr. Wicker. Thank you, Ms. Meek. Mr. Lavery, we are delighted to have you today. Mr. Lavery. Thank you, Mr. Chairman. It is my pleasure to be here with you and the subcommittee. I want to thank and commend Representative Meek for not only her kind introduction, but more importantly, her great work with regard to the cause of lupus research. By way of introduction, as Representative Meek said, my name is Jack Lavery. My full time occupation is, as she said, is as a senior vice president of Merrill Lynch and Company. I am here today representing the roundly 1.4 to 2 million Americans that are affected by lupus. So I am here today really as the Chairman of the Board of the Lupus Foundation of America. Part of my reason for my involvement with lupus is that one of those 1.4 to 2 million Americans is my now 28 year-old daughter, who is affected by lupus. What is lupus? It is a chronic inflammatory disease where the body's immune system basically, the body turns against itself in effect. It is difficult to correctly diagnose, and frankly, at this stage, the treatments currently available can ultimately be as devastating in their consequences as the disease itself. What we do know is that 90 percent of the people who have lupus are female. Furthermore, the relative incidence of lupus is much greater among African-American females, Asian-American females, and Hispanic-American females. So I would submit that this truly is a diversity issue. As I look to try to raise the share of mind that lupus gets, not only here on Capitol Hill, but also with the corporate community, it is truly in 1997 a diversity issue of the first order. The Lupus Foundation of America, by background, is a membership organization of 91 odd chapters in pursuit of a cause and cure of lupus. The three-pronged goal of the Lupus Foundation is, simply stated: early detection, alleviation and ultimately eradication of the disease. Patient services, education and support of research are all key priorities. Our strategic plan has three tenets to it, national legislative advocacy, raising share of mind here on Capitol Hill through a grass roots effort as well, public awareness, and also resource development, i.e., fund raising. The key, though, is enhancing biomedical research in general. I therefore urge the members of this subcommittee to support funding for NIAMS at the $280 million level recommended by the Coalition of Patient Advocates for Skin Disease Research, of which the Lupus Foundation of America is a member. We also know that there is a genetic predisposition to lupus. My wife's mother had Crone's disease before she died. My wife has myasthenia gravis. My daughter had lupus. Those are all auto-immune diseases. As for that matter is MS, Grave's Disease, and several others. Lupus, I believe, is truly the prototypical auto-immune disease. In other words, supporting research in NIAMS at the level that I mentioned, and lupus research in particular, as Representative Meek is advocating, truly will help unlock the keys to MS, myasthenia gravis, Grave's, and Crone's, as examples. Only through further research will we really find ways to improve both the prognosis and the quality of life for people affected by lupus. I want to touch on my daughter. At age 13, she was diagnosed incorrectly with juvenile rheumatoid arthritis. At age 16, it was then incorrectly diagnosed as vasculitis, a non- specific inflammation of the blood vessels. At age 19, finally, it manifested itself to be correctly diagnosed as systemic lupus erythematosus, the technical name of the disease. My daughter underwent the conventional treatment for lupus, steroids. Mr. Chairman, protracted use of steroids causes osteonecrosis, bone death. My own daughter has personally, as an example of lupus, has herself experienced during her college career five separate operations, four decompressions, drilling of her left knee, right knee, left hip, right hip and left elbow, all to try to create renewed vascularization, i.e., blood vessel growth, in those areas. It failed with regard to the hips. She has had since bilateral hip replacement. She graduated on time with her class, summa cum laude, from Ryder University, I'm delighted and proud to say. But lupus is in the kidneys. You saw on the news recently Oscar Robertson, the great basketball legend, just donated his kidney to his daughter in Cincinnati, age 32, with lupus nephritis. My daughter has lupus in the kidney, and the principal treatment for lupus in the kidney is cytoxin, a highly toxic, though effective in the kidney, highly toxic chemotherapy drug, the side effects of which can be lymphoma later in life, sterility or bladder cancer. Lupus patients truly undergo a significant challenge. What we are stressing at the Lupus Foundation of America is the need for collaboration between the public and private sector and the need for Federal dollars and truly maintaining a partnership between the public and private sector in lupus research. I want to stress the importance of the committee's support. I want to thank the committee on behalf of my daughter, Dena, and all lupus patients and their families. Finally, I want to ask you, no, better still, I really implore you, for lupus research funding and biomedical research funding in general. Even if it turns out to be too late for my daughter, it may help your daughters or possibly your sons. Thank you very much. [The prepared statement of Jack Lavery follows:] [Pages 998 - 1003--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Mr. Lavery. Ms. Meek? Ms. Meek. Mr. Chairman, as you know, we are requesting $50 million for research funds for lupus, $50 million a year. We feel that is the smallest amount we could ask, and Mr. Chairman, we really need more. We felt that with the financial situation being as it is, we limited our request to $50 million a year. So we ask certainly your consideration of our request. Thank you, Mr. Chairman. Mr. Wicker. Thank you, Ms. Meek. Thank you so much. ---------- Thursday, April 17, 1997. WITNESS TOM SHORTBULL, AMERICAN INDIAN HIGHER EDUCATION CONSORTIUM Mr. Wicker. Our next witness is Mr. Tom Shortbull, President of Board of Directors and President, Oglala Lakota College. We certainly appreciate your attendance today, and we are delighted to receive your testimony. Mr. Shortbull. Good afternoon, Mr. Chairman. My name is Tom Shortbull, as you said, and I am President of Oglala Lakota College. If you want to reference that in history, we were the tribe that defeated Custer at the Battle of the Little Big Horn. I represent not only my institution here today, but the 29 other institutions of the American Indian Higher Education Consortium, which are principally tribal colleges. I am submitting a written statement for the record. My purpose for being here today is twofold. First, I am requesting your support for funding of vital, basic education, vocational education and student assistance programs that are critical to the survival and success of the tribal colleges. These requests are explained in detail in my written statement, and I refer you to it. Second, I am here, and this is the major focus of my presentation, is to express to you my concern as to how the welfare reform legislation will affect our tribal colleges. I think there will be a major, major impact on our reservations. For example, on my reservation, which is the Pine Ridge Reservation, and the Rosebud Reservation, which is the adjoining reservation to us, there are more than 5,000 people that are on AFDC. This constitutes 54 percent of the entire AFDC population in the State of South Dakota. That is readily understood when you look at our situation, where our county on the Pine Ridge Reservation has consistently been limited as the poorest county in the United States. Secondly, the Rosebud Reservation, for a number of years, was listed as the third poorest county in the United States. We have situations on our reservation where unemployment borders 60 to 80 percent. So we are going to see a major impact. In fact, I think we saw it this semester at our institution. Our institution, over the last five years, has hovered right around 1,100 students. And in this particular semester, we went up to 1,300 students, a 20 percent increase. We think, speculate that a substantial number of those students came into our institution because of the welfare reform legislation. There is that requirement that students must have 12 months of training to remain on welfare funding. In order to understand our funding needs, I would like to give you basically a brief history of the tribal college movement in this country. The fact of the matter is that we as tribal colleges and Indian people are really new to the arena of higher education. The reason for that is that when we were placed on reservations some 100 years ago, there was a mentality in this country that we were simply not smart enough to be professional people, therefore, we were sent off to trade schools. In the 1950s, there began to be a trickle of Indian people that went on to institutions of higher education. When I was a freshman in 1965, 20 of us started out as incoming freshmen. And only two of us graduated four years later. The situation that occurred then on our reservation is that our elders said, why can't we educate our own Indian people. That is what led to the creation of our college in 1971. We have done a fantastic job, Mr. Chairman. If you would have come to our reservation 50 years ago, you would have seen very few teachers or nurses in our hospitals and our school systems. Now if you come to our reservation, there are some 200 teaching positions that are now filled by Indian people, and 86 percent of those teachers are our graduates. Likewise with nurses, 95 percent of the nurses in our hospital are now Indian people, and 80 percent of those are our graduates. So we have done a fantastic job. In fact, in 1989, the Carnegie Foundation issued a report that said that we were one of the best kept secrets in Indian County. I think that is still true today. I do not think that many people realize the great work that we are doing. On May 19th, the Carnegie Foundation will issue another report to highlight the great work that we are continuing to do for Indian people in this country. I would ask you and the committee members to read that report to see the great things that we are doing. Now, in regard to our funding needs, Congress in 1978 passed the Tribally-Controlled Community College Assistance Act that basically provides funding authorization of about $5,800 per FTE students, as Indian people, at our institutions. Unfortunately, Congress has never appropriated the full $5,800. The highest we have gotten was about $3,500 about five years ago. As our enrollments increase and Congress does not appropriate any more money, our funding level has basically gone down rather than receiving an increase from Congress. We are at basically $2,900 right now. The President has seen that we do need this increase in funding. So in the President's request to Congress, he has requested a $3 million increase in our appropriation. What we are asking is, we feel it is important that Congress match what the President has done. So rather than having a $3 million increase, we feel that there should be a $6 million increase. The bottom line, Mr. Chairman, is, will there be a legacy in this country that Congress failed to provide the necessary financial resources so that we can allow this initiative that Congress has of reforming the welfare system, can we assist you in that endeavor? So that is really the importance of my presentation. [The prepared statement of Tom Shortbull follows:] [Pages 1007 - 1014--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, President Shortbull. We appreciate your attendance today. Mr. Shortbull. Thank you. [Clerk's note.--Excerpts to the requirements of House Rule XI was too extensive to print. Documents will be retained in Committee's files.] ---------- Thursday, April 17, 1997. WITNESS FELIX M. BARKER, AMERICAN OPTOMETRIC ASSOCIATION Mr. Wicker. Our next witness, and again, I will remind all witnesses of the five minute rule, is Dr. Felix M. Barker, representing the American Optometric Association. Dr. Barker, we are happy to have you. Dr. Barker. Thank you, Mr. Chairman and members of the committee. I am Dr. Felix Barker, and I am a Professor and Director of Research at the Pennsylvania College of Optometry. I am here representing over 30,000 doctors of optometry of the American Optometric Association. Since the National Eye Institute (NEI) was founded in 1968, optometrists have been active participants in projects managed by the Institute, the results of which have improved the quality of life for American citizens. We applaud the research achievements of the NEI, and endorse the funding of $362.7 million for the fiscal year 1998 NEI budget as recommended by the National Advisory Eye Council and referred to as the citizen's budget proposal. Although we recognize the fiscal constraints currently facing the Congress, we ask the subcommittee to make funding for the National Eye Institute one of its highest priorities, by providing 9 percent increase over last year's budget. This increase is necessary to provide new treatments to combat blindness and improve vision. Vision and eye health problems are the second mostprevalent, chronic health care problem in the U.S., affecting more than 120 million people. Visual disorders reduce the educability of the child and hasten the loss of independence in the elderly. Visual disorders and disabilities impose billions of direct and indirect costs on our society each year. Finding a cure for vision disorders and eye diseases is essential to prevent consequent handicaps, especially in the children and elderly. Fear of blindness is second only to fear of cancer among our Nation's elderly. Vision and eye health problems increase in frequency and severity with age, often becoming a key reason for the abandonment of independent living among the elderly. Whatever their age, over 1 million Americans are legally blind. Over 12 million suffer from some form of irreversible visual impairment. Vision rehabilitation can help reduce the costs to these individuals and to society from lost wages and welfare payments. While NEI research support has made advances in developing effective optical aids to maximize remaining vision, there is much research that needs to be done. The NEI has conducted and support research which has resulted in improved diagnosis and treatment of many eye diseases. Age related macular degeneration, or AMD, is the most common cause of severe visual impairment in older Americans; 1.7 million have decreased vision and 800,000 are legally blind from this disease. In the House and Senate report language that accompanied the National Eye Institute's fiscal year 1997 appropriations bill, the NEI was encouraged to do more research in AMD. The NEI currently provides support totalling $75 million for macular degeneration research, of which $16 million is targeted for AMD research. The NEI is exploring new AMD research opportunities relating to growth factors, tissue transplantation, gene discovery and therapeutics. In addition, the NEI's national eye health education program has held several workshops to plan a health education program proposal for low vision patients, including those with AMD, as one of the major target audiences. We also encourage substantial funding to continue research progress in the area of children's vision. Children are at high risk because of the impact of uncorrected vision handicaps on their educational and developmental progress. Although a number of studies have suggested the significant relationship between visual functioning and learning, a multi-center clinical trial is needed to evaluate treatment therapies. The NEI has recently funded a clinical trial planning grant to study screening tests to identify three year olds in need of vision care for amblyopia, which is called lazy eye, and strabismus, which is called crossed eyes, and significant refractive errors. The NEI budget should permit funding of grants at a high level in these areas. Since more than 120 million Americans wear glasses or require some form of visual correction, research in the cause and prevention of refractive errors and other visual dysfunction should continue. NEI has a remarkable record of scientific breakthroughs attributed to clinical trial research, beginning with the diabetic retinopathy study in the 1970s. More appropriate treatments for diabetic retinopathy have prevented catastrophic vision loss in severe diabetics, thus saving substantial public funds in the process. We support NEI's research in the eye complications of Acquired Immune Deficiency Syndrome, or AIDS. The results from NEI researchers demonstrating the effectiveness of drug therapy against the CMV retinitis in people with AIDS is very encouraging in the fight against this public health problem. We are grateful for the commitment Congress has demonstrated to the NEI and its mission. There is still much more to be done to preserve and enhance vision. We encourage this committee to continue its commitment to NEI and eye and vision research by providing the $362.7 million funding level recommended in the budget. Thank you again for the opportunity to present this testimony, Mr. Chairman. [The prepared statement of Felix Barker follows:] [Pages 1017 - 1025--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Dr. Barker. ---------- Thursday, April 17, 1997. WITNESS ALAN G. KRAUT, AMERICAN PSYCHOLOGICAL SOCIETY Mr. Wicker. Our next witness is Dr. Alan G. Kraut, representing the American Psychological Society. Dr. Kraut, we are glad to have you. Dr. Kraut. Well, I want to thank you for the opportunity to testify today on behalf of those NIH investigators who conduct research on the behavioral aspects of physical and mental health, including research on relationships between brain and behavior, on human development and aging, on mental illness, on drug abuse and alcohol addiction, chronic pain, disease prevention, heart disease, cancer and AIDS, among many other topics. Because of psychology's involvement in virtually every NIH institute, and our support of many interdisciplinary links, we are very grateful for your leadership in promoting the strongest possible budget for NIH. For fiscal year 1998, we support the 9 percent increase recommended by the Ad Hoc Group for Medical Research Funding, a coalition that we are a part of. I want to make just a couple of points today, but I ask that my complete written statement be placed in the record. I want to give you an update on something that this committee has been instrumental in promoting at NIH, and that is, support for younger NIH investigators. For the past few years, you have been giving crucial encouragement to a new NIH mechanism called B/START, the Behavioral Science Track Awards for Rapid Transition. This is a program of small grants, only 25,000 or so, which provides seed money for young researchers to pursue their ideas. B/START is a model for ensuring a future generation of high quality researchers. This past year, B/START has been cited as exactly that in such national publications as Science Magazine, the Journal of NIH Research, and the Chronicle of Higher Education. It was first developed at the National Institute of Mental Health. B/START is now being used by the National Institutes on Drug Abuse and Aging to build a cadre of scientists. With your continued support, we believe that other institutes will follow. Ten years from now, I assure you that these young B/STARTers will be the senior researchers who are solving today's mysteries of health, and all of us will feel tremendous pride at having helped them in their careers. This committee also encouraged NIH to implement the research training recommendations of the National Academy of Sciences, which targeted behavioral science as one of five areas in which national research service awards should be increased. In response, the NIH Office of Behavioral and Social Science Research is setting aside $700,000 to supplement NRSA grants at individual institutes. That office, in conjunction with the National Institute of Mental Health, is also studying new programs designed to bring together the best of behavioral science with the best of biological science. These initiatives simply would not have happened without your involvement, and we are very grateful for your support. We hope you will continue to encourage NIH to build the Nation's capacity to address some of the most profound health issues facing us today. A related area that has been of interest to this committee over several years has been the status of behavioral science at the National Institute of Mental Health. I am pleased to report that NIMH is taking steps to strengthen and expand its research enterprise, including the development of two research plans to guide the future of research on mental illness. These plans represent important milestones at NIMH, particularly given the enormous toll that mental illnesses such as depression and schizophrenia represent. You mentioned both plans in the committee's last few reports, and we hope you will continue to encourage NIMH support in developing a timetable for implementing the recommendations of those plans. Let me turn now to the National Institute on Drug Abuse, where under the leadership of Director and Psychologist Alan Leshner, NIDA is expanding its investigations of drug abuse and addiction to look at the factors that place young peopleat risk for starting to take drugs, what factors lead some individuals to go on to become abusers, and what factors allow certain people to quit. We know that drug abuse and addiction can be reduced through this kind of research, but much more remains to be done. We fully support the Administration's request for NIDA, which includes an additional $30 million. Because of science's critical role in addressing the Nation's urgent drug problems, we ask the committee to support the proposed budget expansion for NIDA in whatever final form the NIH budget takes. The final area I want to talk about is the NIH Office of Behavioral and Social Sciences Research. I said earlier that behavioral research is conducted throughout NIH. For years, this committee, the National Academy of Sciences, the Institute of Medicine and many Surgeons General have expressed the importance of these areas by pressing NIH to increase the amount of behavioral research it supports, and to improve the fit between behavior and other areas of NIH support. Under Psychologist Norman Anderson, the Office of Behavioral and Social Sciences Research has taken the lead in this and has promoted many activities to strengthen behavioral research throughout NIH. The Office has been enormously effective in its few year history. We ask the committee to continue to recognize the important contributions of this Office toward improving health. Thank you. [The prepared statement of Alan Kraut follows:] [Pages 1028 - 1038--The official Committee record contains additional material here.] Mr. Wicker. Thank you very, very much for your testimony. ---------- Thursday, April 17, 1997. WITNESS SANDRA KOWNACKI, AUTISM SOCIETY OF AMERICA Mr. Wicker. Our next witness is Sandra Kownacki, on behalf of the Autism Society of America. We are delighted to have you. Ms. Kownacki. Good afternoon. I am Sandra Kownacki, and I am President of the Autism Society of America. I appreciate the opportunity to be here today. It is an honor to present public witness testimony on behalf of the Autism Society of America. I am here not only as the President of the organization, but most importantly, because I have a child with autism. I have a 21 year old daughter, Amy, who has autism. She is 21 and she will be leaving the public education system this year because of her age. There is no typical manifestation with which an individual with autism can be classified, and my daughter is no exception. She was nine years old before she was ever diagnosed with autism. I knew from the very beginning that she had a problem. I have a masters degree in Special Education. I was not certain what it was. Even her pediatrician, who was head of pediatrics at St. Louis Children's Hospital, did not believe she had autism, because she was so social and so affectionate. If she were here with me today, she would be up there with you getting a drink of water, giving you a hug and a kiss. All children with autism are very different. What do we know about autism? We know that it is not a mental illness. Children with autism are not unruly kids with behavior problems. Many times, their behavior is merely a manifestation of them trying to communicate to you. Approximately half the children with autism are non-verbal, my daughter being one of them. A lot of times, different behaviors are the only thing they have to communicate something to you. Autism is not caused by bad parenting. In fact, no known factors in the psychological environment of a child have been shown to cause autism. Autism is considered developmental disability that typically appears during the first three years of life. It is believed to be a genetically based neurological disorder that affects more than 400,000 individuals in the United States, making it the third most prevalent disability, even more common than Downs Syndrome. Autism is four times more prevalent in boys than girls, and it knows no racial, ethnic or social boundaries. At the present, there is no prevention, treatment or cure for autism. The estimated health care costs associated with autism is greater than $13 billion a year. As I said before, there is no typical manifestation of autism. It is a spectrum disorder. That means that the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of behaviors in any degree of severity. Two children, both with the same diagnosis of autism, can act very differently from one another. The ASA agrees with Dr. Varmus' assessment that this is a promising time in research on autism. After many years of neglect and lack of sufficient funding, researchers at several institutes are now working to unlock the mysteries of this syndrome. A new era of autism research is underway. The National Institutes on Child Health and Human Development has taken the lead in coordinating NIH's autism research effort. NICHD joined with the National Institute on Deafness and Other Communication Disorders in issuing an RFA on the neurobiology and genetics of autism. The response to the RFA was so outstanding that the NIH Office of the Director gave NICHD additional funds to ensure that the most promising proposals could be funded. Because autism is such a complex disease, many institutes are engaged in research that might be beneficial in advancing our understanding. The NIH Autism Coordinating Committee, co- chaired by the directors of the NICHD and the National Institutes of Mental Health, will ensure that the research is most effectively conducted throughout all the institutes currently engaged in autism research. As a result of these efforts, autism research is expanding in many areas, including genetics, molecular biology, neuropathology, the development of animal models and behavioral and cognitive neuroscience. As you have heard, basic and clinical research in this area is progressing. The scientific opportunities that exist are very encouraging. With additional support, we are optimistic that significant improvements can be made in the prevention and treatment of autism. This would require a 15 percent increase in the 1998 budget. As an absolute floor, we support the recommendations of the Ad Hoc Group for Medical Research Funding for a 9 percent increase in fiscal year 1998. [The prepared statement of Sandra Kownacki follows:] [Pages 1041 - 1047--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much. Your complete statement, of course, will be submitted for the record. We very much appreciate your bringing this matter to our attention. Ms. Kownacki. Thank you. Did you have any questions? Mr. Wicker. No. Thank you so much. Ms. Kownacki. Okay, thank you. ---------- Thursday, April 17, 1997. WITNESS MYLES P. CUNNINGHAM, M.D., AMERICAN CANCER SOCIETY Mr. Wicker. Our next witness is Dr. Myles Cunningham, representing the American Cancer Society. Dr. Cunningham, I note that you are the constituent of our Subcommittee Chairman, John Porter, who certainly wanted to be here today. But as you may know, he is ill. He has had a back problem for the last several days, and has been in very serious pain. He regrets very much that he is not able to be here today personally. Dr. Cunningham. Mr. Chairman, I am a surgical oncologist, and I am sorry I can not bring skills to the table that would bring Mr. Porter to the Chairman's table. I, too, regret his absence. But thank you, Mr. Wicker, our sincere thanks to you and members of your subcommittee for your past support of cancer prevention and control. I am here as President of the American Cancer Society, but really representing the 1.2 million Americans newly diagnosed with cancer every year. And I am here to tell you that your past investments in funding for the agencies and health is really paying off. Twenty-five years ago, our country declared war on cancer. Recent evidence has shown that there is new hope, but that we can and must do better. Last November, we, the American Cancer Society, announced for the first time, news of a sustained decline in overall death rates from cancer in the past five years. That is the first time in this century that has occurred. That decline that translates into approximately 18,000 lives saved every year has come about by our steady, but unfortunately, often uncoordinated efforts to apply the knowledge that research has brought us in three areas: prevention, detection and improved treatments. In the next 20 years, we can accelerate this trend significantly and perhaps cut the rate of cancer mortality to half its present. To do so, we must accelerate first our support of biomedical research, exploiting in particular our rapidly expanding understanding of molecular biology and genetics. Furthermore, we must ensure that clinical research does not become an orphan to managed care. The American Cancer Society fully supports the Congressional leadership's call for doubling the budget of the National Institute of Health, including the National Cancer Institute, over the next five years. We think you can make a down payment on this goal by ensuring that research takes full advantage of opportunities in basic, clinical, translation and behavioral areas and that all Federal agencies give priority to research and control programs for cancers that disproportionately affect minorities, especially prostate cancer in African-American males. Let me spend just a few moments on the issue of chronic disease, for cancer is, both in perception and fact, often a chronic disease. Chronic disease represents 60 percent of our Nation's total health and medical care costs, but commands only 3 percent of the Nation's public health budget. Our cancer control agency in this country is usually identified as the Centers for Disease Control. The American Cancer Society strongly supports cancer prevention and control programs at CDC and other agencies. I would like to highlight just four areas for your attention. First, we must expand and enhance State-based surveillance efforts; that is, the cancer registries that are State-based. These measure the impact of treatment quality, they guide research priorities, and they determine the effectiveness of interventions to prevent and detect cancer. They are one of the few available tools we have to measure cancer treatment surveillance. And that is extremely important as we need to become increasingly focused on outcomes and outcomes research. We must maintain and expand the breast and cervical cancer control program, which has screened more than 1 million people to date, and has resulted in increasing numbers of women being diagnosed with early, rather than late, stages of breast and cervical cancer. Each year, over 900,000 cases of highly curable basal or squamous cell cancers are diagnosed, along with more than 40,000 cases of a much more serious skin cancer, melanoma. A relatively small investment of $3 million will support a nationwide education and outreach program designed to teach sun safety that could greatly improve early detection of skin cancer. Finally, Mr. Chairman, I would ask you and the rest of your committee to step forward with me into the future, 50 years or perhaps just 20 years, which would be approximately the 100 year anniversary of the American Cancer Society, and from that vantage point, look back on our contemporary society. That future society, hopefully more civilized than our own, will look back at this time and consider it truly barbaric. They will say, how did we permit, even encourage, 35 million Americans to smoke? How could we have permitted almost one half million excess tobacco related preventable deaths to occur every year? Why did we not as a society stand trembling with rage as our children ages 10, 11 and 12 began to smoke? Why did we not recognize sooner that this country cannot afford the health and social burdens of tobacco consumption? I think your response should be to support efforts at the Federal level, at NCI, CDC, and all appropriate agencies to prevent tobacco use, particularly by youth, by expanding nationwide efforts aimed at decreasing youth access to these deadly tobacco products. The $15 million additional, that is above the $50 million or so we spend for this effort now, is really a pittance compared to the billions spent annually by tobacco companies to hook our children. The National Cancer Act mobilized this country's resources to fight cancer. Your continued investments in these areas that I have highlighted will allow us to accelerate the trend in cancer mortality reduction. Thank you again, Mr. Chairman, for hearing our appeal for necessary funding for cancer research, prevention and control. [The prepared statement of Myles Cunningham, M.D., follows:] [Pages 1051 - 1064--The official Committee record contains additional material here.] Mr. Wicker. Thank you very, very much for your testimony. I apologize to all the witnesses for just having to move along so rapidly. ---------- Thursday, April 17, 1997. WITNESS MUSTAFA LOKHANDWALA, AMERICAN SOCIETY FOR PHARMACOLOGY AND EXPERIMENTAL THERAPEUTICS Mr. Wicker. I believe our next witness is on behalf of the American Society for Pharmacology and Experimental Therapeutics, Dr. Mustafa Lokhandwala. We are glad to have you with us, Doctor. Mr. Lokhandwala. Thank you, Mr. Chairman. I am Mustafa Lokhandwala, a member of the American Society of Pharmacology and Experimental Therapeutics (ASPET). I also serve as Dean and Professor of Pharmacology at the University of Houston College of Pharmacy. Today, however, it is as a member of ASPET that I appear before you in support of the research budget of the National Institutes of Health. You have my written testimony in front of you, so I will simply highlight what is contained therein, to save time. Before I begin, I would like to thank the committee for this opportunity to testify. Pharmacological research is an area that impacts the constituents of every Congressional district in the Nation. I am delighted to say that pharmacological and other biomedical research that impacts public health has received bipartisan support, and we hope that such support will continue. Pharmacology is the science which explores the mechanisms by which drugs produce their effect on the human body. Pharmacologists are involved in the discovery of new drugs. ASPET has a membership of about 4,300 scientists involved in basic and clinical research, teaching, and administration throughout the United States. Pharmacologists are found in schools of medicine, veterinary, pharmacy and nursing, in private and government research laboratories, and in a wide variety of pharmaceutical and biotechnology companies. Our teaching efforts are a vital part of the formal education for the health care practitioners of tomorrow; our research efforts are crucial to the development of new medicines to fight old and new diseases and to improve human health. As a constituent society of the Federation of American Societies for Experimental Biology, also known to you as FASEB, our society supports the Federation's goal of a 9 percent increase over the fiscal year 1997 level in funding for the NIH. This recommendation is also consistent with the NIH's professional judgment estimate, which is based on a budget proposal sufficient to sustain funding for new research projects at a success rate above 30 percent. ASPET knows that members of this committee are aware that medical research is at the brink of discoveries that could affect the lives of millions of Americans through reduced health care costs, improved health and quality of life, and increased productivity. Please allow me to describe some recent examples of developments in my field that came about as a result of support provided through the NIH. For instance, diabetes. Eventually it may be possible for someone with diabetes simply to swallow a drug that turns on a modified insulin gene instead of injecting insulin as we do now. Long term studies of immunosuppressant drugs have yielded many developments, including a possible form of gene therapy, such that you could have genetically engineered T cells, which allow the production of a protein such as insulin to be turned on and off, depending upon the patient's need. HIV. Scientists have been able to design drugs known as protease inhibitors, which arrest the action of protease, an enzyme critical to the maturation of the AIDS virus. Advances in basic research methods, such as crystallography and structural biology, have made this approach to drug design possible. The concept of rational drug design may some day be applied to the development of drugs that target proteins produced by pathogens that infect humans, livestock and even plants. Cardiovascular disease. New thrombolytic agents have been developed which are capable of dissolving clots in coronary and cerebral arteries which are used for the treatment of heart attacks and stroke. These agents can be life saving in case of heart disease, and prevent severe disabilities resulting from stroke. These are only a few of the many advances made bypharmacological research, which in turn has improved our ability to treat patients suffering from various diseases. However, we must not rest on these achievements, but continue to invest in research as greater challenges face us in the 21st century. Although breakthroughs are being made in AIDS and cancer, the new century will bring new challenges, provided by development of resistance and tolerance to drug therapy, as well as by the aging population and the problems associated with drug therapy in the elderly. We are proud of our past. Our ongoing achievements show great promise. Your previous support has been responsible for this enormous progress. But America's biomedical research progress and leadership position are in jeopardy due to limited funding available in many critical areas of research. Members of ASPET realize that we are in times of tight fiscal constraints. They are also aware of the unlimited potential of their research. If increases in biomedical research are continued in future years, we will be able to capitalize on current therapeutic opportunities emerging from recombinant DNA techniques and sequencing the human genome. As you continue your deliberations throughout the appropriations process, ASPET urges you to continue the support you have provided NIH in recent years. On behalf of ASPET, I want to thank you for the opportunity to testify before this subcommittee. Thank you very much. [The prepared statement of Mustafa Lokhundwala, Ph.D., follows:] [Pages 1067 - 1074--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Doctor. And certainly we appreciate your testimony. I hope that we are able to find a way to continue providing adequate research funds. Mr. Lokhandwala. Thank you. Mr. Wicker. Thank you so much for what you told us today. ---------- Thursday, April 17, 1997. WITNESS PAUL HANLE, PHILADELPHIA ACADEMY OF NATURAL SCIENCES Mr. Wicker. Our next guest is Mr. Paul Hanle, a representative of the Philadelphia Academy of Natural Sciences. We are delighted to have you with us today. Mr. Hanle. Thank you, Mr. Chairman, and good afternoon. Several months ago, I was appointed the President and CEO of the Academy of Natural Sciences in Philadelphia. Prior to that appointment, I had the pleasure of spending 13 years at the National Air and Space Museum of the Smithsonian Institution. More recently, working as the Executive Director of the Maryland Science Center in Baltimore. So each experience has given me an opportunity to work with Congress in a variety of capacities. I do look forward to working with you on the Academy's behalf as well. When I arrived at the Academy, I requested a list of public grants and contracts, which also the committee of course requested for this testimony, and which is attached to it. This list, which is the Academy's public funding balance sheet, shows that the Academy grants are heavily weighted to basic and applied research, and less weighted to education and dissemination. I am pleased that the Academy is a significant grantee of the EPA and NOAA, National Science Foundation and even NIH. But organizations such as ourselves, it seems to me, have a responsibility not only to conduct quality research, but also to share with the public the results and value of that research. As a scientist, I understand the importance of moving forward with scientific research and discoveries. As a historian, I understand the importance of preserving the tangible evidence of science, which provides researchers an invaluable baseline against which we measure new discoveries. The Academy was founded in 1812, and it is considered one of the top 10 international research museums of natural history. We conduct research and provide public education programs that study the environment and its diverse species. Our research focuses on the studies of plants and animals, aquatic ecosystems as well on the United States East coast of the Nation and the World. And in fact, under the leadership of the National Medal of Science Recipient, Dr. Ruth Patrick, we have the Nation's longest running program of bio-monitoring U.S. waterways which began in 1948. Just to conclude this picture of the Academy, and then I will get to my point, we have 25 million plant, animal and fossil records spanning pre-history to 1997. Our mission is to expand the understanding of nature through discovery, and to inspire stewardship of the environment. This has provided a basis for us to move forward, and continues to motivate us to formulate new ideas and visions. As scientific research continues to become more specialized, it is very important to translate research findings to the public. While the Academy would never belittle textbook learning, we emphasize the importance of providing tangible examples through experience for students to comprehend theory. We hope that with this approach, in laboratory work, on-floor learning and field trips, students will see the benefit of science and perhaps will explore a career in the sciences. Women In Natural Sciences, which we call WINS, is one such program that I am here to talk about today, very quickly, which began in 1982. It is privately funded. It is a year-long natural sciences program offered for about 30 academically talented female students, but students who live in households where one or both parents are absent, and who demonstrate financial need. Each of the programs combines field trips and classroom study to provide a comprehensive basis for learning natural science. Through this program, the academy has reached out to women and invited them to participate in the study of science where the female gender has historically been under- represented. The responses and outcomes from WINS graduates have been so positive that we have in fact expanded and instituted the WINS II program, which is a follow-on program comprised of the WINS graduates to encourage them to develop their careers in academic assistantships, science interns and museum explainer jobs, for example. We have measurable outcome of this program. With the assistance of the Department of Education, the Academy is looking to expand these current programs in fiscal year 1998, so that we can continue our outreach. The Academy requests the subcommittee's support for its efforts to work with individuals locally and nationally to increase the understanding of science. Specifically, we believe that WINS is a program which might be considered for funding with the Department of Education. I appear today to share with you these successes in science education and ask for your support as we work to expand upon these successes. Thank you for hearing my requests for your support. [The prepared statement of Paul Hanle follows:] [Pages 1077 - 1089--The official Committee record contains additional material here.] Mr. Wicker. Thank you very, very much. We appreciate your testimony. ---------- Thursday, April 17, 1997. WITNESS ROSALIE LEWIS, DYSTONIA MEDICAL RESEARCH FOUNDATION DANIEL LEWIS Mr. Wicker. Our next witness is Rosalie Lewis, representing the Dystonia Medical Research Foundation. Ms. Lewis, we are glad to have you. Ms. Lewis. Thank you, Mr. Chairman. I am Rosalie Lewis, Vice President of Development for the Dystonia Medical Research Foundation. It is my pleasure to present testimony to the subcommittee 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 1997 appropriations. In 1985, the first of the three of my four children was diagnosed with dystonia. For my sons and the estimated 300,000 other children and adults, I would like to tell you a little something about dystonia and why we need your help so urgently. Dystonia is a neurological disorder, characterized by severe involuntary muscle contractions and sustained postures. There are several different types of dystonia, such as generalized dystonia, which afflicts many parts of the body, and usually begins in childhood. My sons Benjamin and Daniel have generalized dystonia. Focal dystonia, affecting one specific part of the body, my son Aaron has focal dystonia of the hand. Secondary dystonia, which is secondary to injury or other brain illness. There is no definitive test for dystonia, and many primary care doctors have never seen a case of it. This fact, coupled with its varied presentations, make it difficult to correctly diagnose. It is estimated that 85 percent of those suffering from dystonia are not diagnosed or have been misdiagnosed. Treatment for dystonia has been met with limited and variable success, with drug therapy, botulism toxin injections, and several types of surgery. My children with generalized dystonia take huge dosages of drugs, which makes cognition difficult. But with a choice between walking and not walking, one may choose to tolerate drug side effects. Ben receives injections of botulinum toxin, also known as botox, directly into the abductor muscles of his vocal cords. Luckily, he is experiencing moderate improvement. Since 1977, the Foundation has awarded over 275 medical research grants, totaling more than $14 million. Among the most significant results of this research was the discovery in 1989 of the genetic marker for dystonia, and in 1995 of the gene for the dopa-responsive form of dystonia. We expect to have another gene announcement this June. All this could not have been done without the direct support of the NINDS. We are extremely appreciative of their support and recognition of the urgency of the research work that has to be done. I am here to request that this committee support the 9 percent increase over the 1997 fiscal year budget. I would like to now introduce to you my son, Daniel, so that he can tell you first-hand how his life has been affected as a result of dystonia. Mr. Wicker. Very well, Daniel, we are glad to have you. Mr. Lewis. Thank you. Thank you for allowing me to be here. My name's Dan Lewis, and I am currently a sophomore in high school in a suburb of Rochester, New York. I have generalized dystonia. I did not always walk the way I do, nor write with the difficulty that I have. In fact, for the first seven years of my life, I was able to run, play soccer with my friends, throw a baseball with some accuracy and do what normal boys do. This all stopped one day when the muscles in my legs made walking difficult. Thinking I had sprained my ankle, I did not tell my parents about it, but I did not need to. They already saw what was happening to me. I was very frightened to realize that like my brothers, I also had developed dystonia. I am now 16 years old and have had to adjust my life to medicines and many changes. I currently take 30 pills a day, and have to deal with their side effects. I try hard to ignore the muscle pains in my legs, but sometimes the contractions in my foot are too intense to ignore. My left foot is now locked into an abnormal position because of these powerful involuntary muscle contractions. The dystonia has also made handwriting very difficult. Because of this, I have become ambidextrous, and often rely upon a word processor. I am here to speak for my brothers as well as myself. Besides my brothers, I have met many other young children and teenagers through the Foundation's young peoples group who are more severely affected by dystonia than I am. I worry for them. Where will we be in the years to come if better therapy is not soon discovered? Your help is desperately needed. My parents tell me there is good reason to hope, and I try to remain positive. I realize how difficult it is for you to fight on my behalf, but I urge you to not only remember me, but the several thousand other youths whose productive lives are also affected by this disease. Thank you for your help in the past, and for all that you will do in the future. Some day, I want to be able to tell my children and grandchildren they do not need to fear dystonia, because the cause is known and a cure is available. Thank you for this opportunity to present testimony to this subcommittee on behalf of the Dystonia Medical Research Foundation. [The prepared statement of Rosalie Lewis and Daniel Lewis follows:] [Pages 1092 - 1098--The official Committee record contains additional material here.] Mr. Wicker. Thank you, Dan, and thank you, Ms. Lewis. I certainly believe that every member of this subcommittee shares that hope, and I am glad that the research of the NINDS has been helpful to some degree so far. Ms. Lewis. Thank you. We are looking forward to tremendous growth this year. Mr. Wicker. Thank you. ---------- Thursday, April 17, 1997. WITNESS JULIE SELLERS, ASSOCIATION FOR PROFESSIONALS IN INFECTION CONTROL AND EPIDEMIOLOGY, INC. Mr. Wicker. Our next witness is Julie Sellers, Association for Professionals in Infection Control and Epidemiology, Inc. Ms. Sellers. Good afternoon. As you said, my name is Julie Sellers. I am a registered nurse and the Infection Control Coordinator for the Louisiana Health System in Lafayette, Louisiana. I have been in the health care field for 15 years. I am here today representing the Association for Professionals in Infection Control and Epidemiology, APIC, of which I have been a member for 13 years. APIC is a non-profit, multidisciplinary, international organization, representing more than 11,000 individual infection control professionals, including nurses, physicians and microbiologists. APIC members are committed to improving patient care, preventing adverse outcomes and to minimizing occupational exposure to biological hazards associated with the delivery of health care. APIC is a strong proponent of scientifically based programs and policy designed to protect and enhance the public health, such as those implemented by the Centers for Disease Control and Prevention. We are grateful for this opportunity to share our views on the fiscal year 1998 funding needs and priorities of the CDC. We are equally concerned, however, about regulation that is not science based, and is unnecessary and costly to implement, such as the proposed Occupational Safety and Health Administration's tuberculosis rule. I am here today to speak about both of these issues. I would like to start by thanking the committee for its longstanding support of the Centers for Disease Control and Prevention, particularly with regard to funding for infectious disease programs. Through its efforts and expertise, the CDC has been instrumental in national as well as international efforts to control the incidence and spread of infectious disease. Since the CDC is the primary entity responsible for safeguarding the public's health, it is imperative that the agency receive adequate resources to perform this monumental task. Chairman Porter has personally expressed enthusiastic support for the CDC's programs and accomplishments. He has voiced concern recently about the Administration's relatively modest overall funding request for the CDC of $2.316 billion. This is an increase of only \6/10\ths of 1 percent for fiscal year 1998. Considering the myriad public health challenges that are confronting health care workers on a daily basis, APIC concurs with Chairman Porter that this level of funding for the CDC's many programs is insufficient. APIC is an active member of the CDC Coalition, a Washington-based groupcomprised of more than 100 organizations committed to enhancing public health. The CDC Coalition is recommending a total funding amount of $3 billion for the CDC. APIC agrees that this is a much more realistic funding level, and we hope you will take this into consideration during the appropriations process. APIC believes that the CDC needs more resources in order to adequately address infection prevention control at both the national and international levels. Infectious disease is the leading cause of death worldwide, and a significant cause of death here in the U.S. APIC members, many of whom work on the front lines in infection control and in public health capacities, recognize the urgent need for enhanced prevention measures as well as increased surveillance. In recent decades, significant progress has been made in the prevention and control of many infectious diseases. Today, though, our efforts are confounded. Despite our many accomplishments, changes in human behavior, alterations to the environment, deterioration of our public health infrastructure, widespread antibiotic usage and dramatic increases in international commerce and travel are factors contributing to the proliferation of drug resistance and new resurgent microorganisms. For this reason, APIC strongly supports, at a minimum, the Administration's request of $112 million for infectious disease programs. Approximately $15 million of this amount would go toward enhancing surveillance sites, strengthening epidemiological and laboratory response capabilities and supporting efforts to address emerging infectious diseases on a global level. We are hopeful, however, that the committee will recognize the absolute necessity of this program, and provide a higher level of funding. As you may be aware, international travel and commerce make it possible to transport diseases between states and countries in a matter of hours. Of particular concern to APIC is the safety of our Nation's food supply. We are strong supporters of the President's food safety initiative, and we urge Congress to fully appropriate the Administration's funding request of $10 million for this effort. This represents the minimum amount necessary to begin expanding CDC's program for the early detection of food-borne diseases and to improve outbreak investigation and response capabilities. Optimal success of this program will require the establishment of a fully funded and carefully coordinated public health infrastructure, including the modernization of our public health laboratories, and widespread implementation of an electronic communications network. This will likely continue to be a funding priority for the CDC in the years to come. We believe it is absolutely integral to the future success of our public health efforts. Thank you again for your support of the programs of the Centers for Disease Control and Prevention. Now on a different note. APIC strongly urges this committee to address the issue of dollars spent on unnecessary regulation, particularly health care regulations that are duplicative in nature and lacking any scientific validity. The Occupational Safety and Health Administration is preparing to issue a draft rule addressing tuberculosis infections in facilities such as hospitals, nursing homes, clinics and homeless shelters. The formulation of this rule is in response to a resurgence of TB in the U.S. that began in 1989, but has been under control since 1992. The CDC issued revised guidelines for the prevention and control of TB in 1994, and since that time, the incidence of TB has dropped to the lowest national level ever recorded. The CDC guidelines are practical, flexible, based on science, and proven to be effective, and have been implemented in health care facilities throughout this country. There is absolutely no need for a completely separate OSHA regulatory structure to address this very same issue. APIC believes that the CDC is far more knowledgeable than OSHA to handle TB prevention and control for both health care workers and consumers. Furthermore, the changing nature of infections diseases makes it imperative that guidance from any agency be flexible and continuously updated to reflect changing trends in the occurrence and distribution of diseases such as tuberculosis as well as their methods of control. The structure of the current CDC guideline provides us with this necessary flexibility. An OSHA regulatory standard would not. Clearly, there are significant funding implications associated with this rule, since it will include an inspection component that will be costly for OSHA to implement, a needless waste of taxpayer dollars. We sincerely urge you to question OSHA as to the rationale behind its rule. I thank you for your time and attention to these concerns. [The prepared statement of Julie Sellers follows:] [Pages 1102 - 1110--The official Committee record contains additional material here.] Mr. Wicker. Thank you. Let me ask you a couple of questions. Ms. Sellers. Certainly. Mr. Wicker. I know we need to move along. This OSHA rule with regard to tuberculosis, is it in the comment stage? Ms. Sellers. We expect publication in the Federal Register within two or three months of the proposed rule. At that point, it will be in the comment stage. Mr. Wicker. I see. And do you know when the implementation is proposed to take effect? Ms. Sellers. No, sir, we do not have any indication of that from OSHA. We anticipate possibly towards the end of this year. Mr. Wicker. Has the CDC officially commented as to the improper scientific basis used by OSHA? Have they gone out on a limb that far? Ms. Sellers. I do not think they have, sir. Mr. Wicker. An agency battling an agency. Ms. Sellers. Yes, sir. Mr. Wicker. Well, you certainly have gotten my attention on that issue. At first blush, it stands to reason that CDC would know a little more about tuberculosis control than OSHA. Ms. Sellers. Certainly. Mr. Wicker. You mentioned antibiotic usage. Are you implying that over-use and improper use of antibiotics has created a tolerance? Ms. Sellers. Yes, sir. Mr. Wicker. And that has become a problem? Ms. Sellers. It has. Mr. Wicker. What do you advocate? Ms. Sellers. Education for clinicians who will prescribe, so that they have a more judicious and appropriate prescribing pattern for antibiotics. Mr. Wicker. Clinicians, nurse practitioners? Ms. Sellers. Clinicians and nurse practitioners, yes, sir. Mr. Wicker. Well, thank you for your testimony. And let me just note that CDC recently celebrated its 50th birthday. Just this week, a delegation from this subcommittee toured CDC in Atlanta, received a briefing. We learned that, although individual members of Congress have visited CDC, that this week was the first occasion for a Congressional delegation, a subcommittee, to tour CDC in an official capacity. We found it very, very educational, very helpful. We hope to work with you. Ms. Sellers. Thank you so much. Mr. Wicker. Thank you. ---------- Thursday, April 17, 1997. WITNESS LARRY T. HUGHES, AMERICAN THERAPEUTIC RECREATION ASSOCIATION Mr. Wicker. Is Larry Hughes here? Okay, Mr. Hughes is Director of the Maryland Wheelchair Sports Foundation, and is here representing the American Therapeutic Recreational Association. Mr. Hughes, we are glad to have you. Mr. Hughes. Thank you, Mr. Chairman. As you already mentioned, my name is Larry Hughes. Thank you for this opportunity to testify today on behalf of the American Therapeutic Recreation Association for fiscal year 1998 spending priorities. The American Therapeutic Recreation Association is the largest national association of recreation therapists, health care providers who use recreation as a modality for rehabilitation. I know first-hand the benefits that recreation therapy can bring to people with disabilities. My testimony today reflects this consumer perspective. After acquiring my disability during military service in Vietnam, I underwent extensive rehabilitation to become functional and independent. Since then, I have become a Paralympic world record holder and gold medal winner in the 1996 Paralympic Games in Atlanta. I am the Executive Director of Maryland Wheelchair Athletic Promotions, Inc., and serve as Commissioner on the Maryland State Physical Fitness Council. My testimony focuses on four major programs of interest to American Therapeutic Recreation Association membership and people with disabilities. Three of which are funded under the Department of Education and one within the National Institutes of Health. American Therapeutic Recreation Association's interest includes programs in the following areas: National Institute for Disability and Rehabilitation Research; Office of Special Education Programs; Rehabilitation Service Administration; National Center for Medical Rehabilitation Research at the NIH. Our testimony speaks directly to the importance of funding for research, training and demonstration projects that advance the rehabilitation education of persons with disabilities. As a result of rehabilitation research and education programs that have been conducted, and the information of these programs that has been disseminated, individuals with disabilities have been able to maintain greater levels of independence, productivity and quality of life. Specifically, therapeutic recreation services has demonstrated significant benefits for individuals with disabilities. For example, as a result of physical active recreation therapy, individuals with spinal cord injuries have shown improved cardiovascular respiratory functioning, increased strength and endurance, a reduction in costly secondary health problems, such as skin ulcers and urinary tract infections. American Therapeutic Recreation Association urges this subcommittee to continue to provide sufficient funding in fiscal year 1998 for research, training and demonstration projects that improve and advance the rehabilitation education of Americans with disabilities. Specifically, we recommend that the subcommittee increase funding for special recreation demonstration projects, administered by the rehabilitation service administration. These projects are aimed at improving the mobility, independence, employment, community integration of people with disabilities. Without question, these projects are meeting their intended purposes and are producing positive outcomes. Even a modest funding increase would permit several additional demonstration projects to be initiated. Increased funding for the National Institute on Disabilities and Rehabilitation Research, in order to foster the current rehabilitation research and demonstration efforts. In the past, the National Institute on Disability and Rehabilitation Research has supported a research project aimed at determining the effects of recreation as a treatment modality in rehabilitation. Temple University's program in therapeutic recreation conducted several studies and demonstrated the role of recreation in achieving physical, psychological and social outcomes that are integral to improving and maintaining health status, emotional capacity and quality of life. One study demonstrates that an aerobic exercise program for adults with physical disabilities can have a significant positive impact on physical fitness, physical work capacity and depressive symptoms. A modest increase in the National Institute on Disabilities and Rehabilitation Research fiscal year 1998 budget will allow the agency to continue the success of previous studies in the important areas of disability and rehabilitation research. Maintain funding for personal preparation, leadership training and research under the Office of Special Education Programs. The Office of Special Education Programs has been very successful in developing educational programs for individuals with disabilities. It has also excelled in training, education, related services personnel. Many American Therapeutic Recreation Association members have benefitted from the Office of Special Education Programs projects that have provided specialized training to therapeutic recreation students in order to develop specialized skills necessary to work with individuals with complex disabilities. Significantly, increased funding for medical rehabilitation research at the National Center for Medical Rehabilitation Research at the National Health Institutes--excuse me one second. Because this is very touching, and it impacts myself. We are very well aware of Chairman Porter's leadership and commitment, and that of the subcommittee, to the National Health Institute, in general, the National Center for Medical Rehabilitation Research, in particular. We ask you to continue your commitment to medical rehabilitation research this year. While the annual costs of disability in this country is $169.4 billion according to 1985 data, NIH's level of funding for rehabilitation research was only $114.4 million in fiscal year 1994. According to information released by the NIH, these figures indicate that this Nation's investment in rehabilitation research is less than seven hundredths of 1 percent of the annual cost of disabilities in America. The fact that $11 can be saved for every $1 spent for rehabilitation testifies to its cost effectiveness and highlights the fact that rehabilitation research and development are vastly underfunded at the Federal level. The American Therapeutic Recreation Association stands ready to share information about the role of recreational therapy, interventions and improving the lives of individuals who contend with illnesses and disabilities, and to demonstrate how therapeutic recreation is a cost effective service within the total fabric of health care, rehabilitation and education services. I would like to thank you for this opportunity to testify. And I hope that you can continue making a difference. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness] [The prepared statement of Larry Hughes follows:] [Pages 1115 - 1120--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Mr. Hughes. We appreciate your fine testimony. And you can be assured that we will pass along your kind comments about the Chairman. Mr. Hughes. Okay, thank you. ---------- Thursday, April 17, 1997. WITNESS CARL A. OLSSON, M.D., AMERICAN UROLOGICAL ASSOCIATION Mr. Wicker. We are expecting a vote some time soon, and so I would remind the remaining witnesses of the five minute rule. On behalf of the American Urological Association, we now have Dr. Carl A. Olsson, of Columbia University. Dr. Olsson, welcome to the subcommittee. Dr. Olsson. Thank you, Mr. Wicker, members of the subcommittee. You know who I am, so I would not repeat it. I am here to represent the views of the American Urological Association on fiscal year 1998 funding for urology research at the NIH. I especially want to thank you and members of the subcommittee for your continued strong support of the NIH. Obviously, as you have already heard this afternoon, we have got to maintain as a high national priority our commitment to the country's biomedical research infrastructure. My statement submitted for the record details all of our recommendations. I would just like to use my time today to highlight some key points. The impact of urologic disease is much larger than generally thought. People of all ages and races and both sexes suffer from urologic diseases. The annual health care costs of these are estimated to be something in the order of $50 billion a year in the U.S. For example, one-third of all new cancers in the U.S. this year will be urologic. In males, it is going to be one half. Twelve million men over the age of 50 suffer from symptoms of BPH, benign prostatic enlargement, and 18 percent of that number will require treatment each year. Incontinence is a huge problem, particularly in the female population, and in our graying society. Many elderly women enter nursing homes for that reason alone. Research into urologic cancers such as prostate, kidney and bladder cancer are conducted through the National Cancer Institute, as you know. Except for the skin cancers, the most common diagnosed cancer in the United States is prostate cancer, with over 330,000 new cases projected for this year by the American Cancer Society. This disease, as you have already heard this afternoon, does affected minorities disproportionately, with the incidence and death rates twice as high in the African-American man than in the white population. Despite the fact that the death rate from breast and prostate cancer are nearly equal, the disparities in research funding are extreme. We urge the subcommittee to allocate $100 million for research in prostate cancer in fiscal year 1998. I have just come from an annual meeting of the AUA. And based on the support you have already provided, we are seeing huge new opportunities in the molecular science of prostate cancer. If we can expand the funds available at NCI for prostate cancer, I believe that rapid scientific progress and treatment progress will follow. We believe that NCI should be instructed to try to establish parity in funding between breast and prostate cancer as soon as possible, not at the cost of breast cancer, but to the benefit of prostate cancer, with new funds. Based on the news at our annual meeting, I am confident that the money would be well invested and would provide rapid results in terms of improved detection and treatment of this disease. The basic science program in urology is housed at the NIDDK. Here again, despite support from Congress, research resources are insufficient to meet the challenges these diseases present. Despite your support, for example, of a NIDDK budget increase last year, spending at NIDDK declined this year. Work to unlock the secrets of prostatic disease proceeds very slowly. If we could increase the funding for basic prostate research by $20 million at NIDDK, we could make significant progress in our understanding of prostate cancer, BPH and prostatitis. I would like to move on now to women's urology. Funding for the many diseases in urology that affect women, such as interstitial cystitis, incontinence and urinary tract infection is woefully inadequate to address the embarrassment, pain and suffering these conditions cause millions of women. For example, the problem of urinary incontinence, which affects women far more than men, is one costing the U.S. some $10 billion to $12 billion annually, not on high tech medical therapy, but on diapers and custodial care. In addition to the previous commitments we have made to interstitial cystitis research, we urge that $20 million be directed towards women's urology research initiatives at NIDDK. We can report progress on one front, and that is, the structure of the study sections for urology. For too long, urology was under-represented on the study sections. And urology grant applications suffered as a consequence. NIH has finally created a special emphasis panel in urology, and we believe this mechanism is working to assure that grant applications in urology are actually reviewed by scientists who have some experience in the field. We certainly appreciate your past support on this point. Our collective persistence has finally paid off. That completes my testimony, Mr. Wicker. I would be happy to answer any questions you have. [The prepared statement of Carl Olsson, M.D., follows:] [Pages 1123 - 1131--The official Committee record contains additional material here.] Mr. Wicker. We thank you so much. Your testimony will be received, and as I explained earlier, we are under the gun. Dr. Olsson. I know that. Thank you. Mr. Wicker. So we will move along. Thank you so much for being with us. ---------- Thursday, April 17, 1997. WITNESS DAISY STEWART, AMERICAN VOCATIONAL ASSOCIATION Mr. Wicker. Next we have Daisy Stewart, representing the American Vocational Association. Ms. Stewart, welcome. Ms. Stewart. Good afternoon, Mr. Chairman. I am Daisy Stewart, President of the American Vocational Association and Associate Professor of Vocational and Technical Association at Virginia Tech University. On behalf of AVA, I want to thank you for inviting me to be here today. Vocational and technical education is all about opportunities; opportunities to learn academic and technical skills, and to explore different career options. Today's programs enable secondary students to pursue further education, seek additional occupational skill development, or move directly into careers. They provide adults, including college graduates, with the opportunity to acquire technical and career skills. The most important feature of vocational technical education is that it is relevant. It helps students understand that academic skills are important. And it provides different ways to learn them. For many at-risk students, these programs provide the motivation to stay in school. They show students how their academic skills are applied in real life situations and the world of work. Federal support for vocational technical education improves programs by increasing the academic course content, updating curriculum, improving teacher skills, acquiring state of the art equipment, and providing career guidance. It also supports partnerships with business and labor, ensuring that programs remain up to date, establish links for work based learning, and secure greater community involvement. All funding is targeted to improvement efforts, not the status quo. For example, Federal funds helped Chicago's Calumet High School to revise its hotel and restaurant management curriculum to fully integrate it with academic subjects and to include work based learning. The City College of Chicago upgraded its curriculum, using Perkins basic state grant and tech prep funding so students receiving nursing certifications and degrees are assured that their credentials are recognized throughout the country. I know that many members of Congress are concerned about education operating in a vacuum. Without input from business and labor, it is impossible for educators to develop effective programs. Vocational technical education is truly a leader in using business expertise. And business leaders see a large return on their investment of time and resources through a highly skilled and highly educated work force. In Illinois, the Northwest Suburban Education To Careers Partnership used Federal funds to help create a collaboration between business and education. This agreement involves 12 high schools, William Rainey Harper College, Roosevelt University, the Illinois Restaurant Association and 32 businesses to develop a food service management program. While students are allowed to end their studies upon graduation from high school with a certificate of mastery, all of the students have chosen to continue their education at the post-secondary level. States like Wisconsin use Federal funds to keep programs current with employers needs. Wisconsin Indian Head Technical College has more than 700 employers actively involved with its programs, and has a placement rate exceeding 90 percent. With the help of effective business and industry partnerships, programs at Wisconsin's North Central Technical College have an overall placement rate for graduates of 96 percent with 21 programs placing 100 percent of their graduates. At the national level, AVA has created a partnership with more than 40 corporate partners to make sure that vocational technical education is in tune with employers' and students' needs. Companies like America Online, Boeing, BellSouth, General Motors and General Mills are joining with small business leaders like Ohio's Clark-Theders Insurance Group as well as one of the Nation's first school to careers universities, the Florida Gulf Coast University, to work with AVA to improve vocational technical education. This field of education is unique in its approach. It is the only area of education that addresses the academic needs of students, while also giving them the technical skills, career exploration opportunities and employability skills needed to launch successful careers and pursue further education. Many of today's students will not pursue or will not complete a traditional four-year college program. To correspond with the demands of the labor market, they will need technical skills and some post-secondary education. But only about 20 percent of the jobs will require a bachelor's degree. Therefore, it is critical that Congress provide an additional 10 percent investment for vocational technical education and school to work programs. In addition, because Federal assistance enables millions of students to achieve the dream of post-secondary education, we request that the Pell Grant maximum award be increased to $3,000. In closing, I want to emphasize that vocational technical education is rising to meet the diverse goals of our students, as well as the needs of the business community. But a strong Federal investment is necessary for the continued success of these critical programs. I urge you to accept AVA's funding recommendation, and thank you again for this opportunity. [The prepared statement of Daisy Stewart follows:] [Pages 1134 - 1141--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much. You mentioned career guidance and your prepared statement mentions tech prep. Ms. Stewart, there is a feeling out there among some people that talk to me that the tech prep program somehow categorizes students too early and puts them on a track where there is not an ability for college preparation. I am just, I always supported tech prep when I was in the State legislature. I was concerned to hear this sort of feeling out there. I wondered if you would comment on that. Are we deciding for students at an early age that they can't go to college and they must be in vocational training? Ms. Stewart. Certainly that is not the intent of tech prep or any of the school to career or vocational educational programs. The purpose these programs seek to serve is to help students expand, not enclose, their career opportunities. We want to help young people recognize all the different possible careers they might have, start to make tentative, at least, choices earlier in their career paths in terms of their school programs, so that they start to learn at the elementary and middle schools the kinds of various careers that are available to them. Perhaps to indicate that they are interested in something in the health care area, or they are interested in something in the electronics area. But not to make specific career decisions, and certainly not to close doors, but rather to see that post-secondary education, whether that might be a two year community college program or a technical program, or whether it might go on and certainly include a four year college degree, are expanding their opportunities rather than detracting. I appreciate your comment, because that is a concern that has been expressed by groups. Mr. Wicker. It really is out there. Ms. Stewart. Yes, it is. And it is something that we are trying to provide information, so that individuals will recognize that the purpose is not to track or to place students in a limited career opportunity, but to help them learn more about the various opportunities that are available. I am of course at a four year college and university. We get many students who come to the university thinking they want to major in a certain career area, but with very little information about what that really involves and the type of work that it includes and the kinds of skills and knowledge that they need. Mr. Wicker. Right. I went to law school and I found out. [Laughter.] Ms. Stewart. So the goal would be through counseling and through career exploration and through opportunities to do job shadowing and participate with career mentors, that young people would recognize what a career in law or engineering or any field is like, so that they can make decisions and perhaps choose more wisely, so that we are making better investments in the education of our young people, not only our investments but also their time and their parents' dollars and investments that they are making as well. Mr. Wicker. In a good tech prep program, at what grade level would the first intervention be with the child's career thinking? Ms. Stewart. We would like to see information more broadly about careers be presented not just in high school, but throughout elementary and middle school. Not that that would be an intervention, but information. Mr. Wicker. Information and how about curriculum? Ms. Stewart. The curriculum, we see that the theme of working around careers and the future work lives of individuals can be a theme that is appropriate for education at all levels. The first specific curriculum dealing with subjects in terms of occupational skills would typically be at the 10th, 11th and 12th grade levels, after students have had an opportunity to explore possibilities, and then to see that they might want to take a pre-occupational class at the 9th or 10th grade level. But more specific skill training would typically come at the 11th and 12th grade levels, and would be built to move right in, then, to post-secondary training for those students who want to pursue it. Mr. Wicker. We are under time constraints, but a student makes, a student goes into non-traditional college preparatory courses in the 10th and 11th grade. Is he or she precluded from moving back in the senior year to a course that will get you to a State university? Ms. Stewart. Not at all. The program that the students would be in, while they might be choosing their electives from subjects that would be in a vocational area, they would still be taking courses in math, science, English, social studies area that would certainly give them the course work needed to enter institutions of higher education, not only post-secondary community colleges, but also four-year colleges and universities. Mr. Wicker. Thank you so much. Ms. Stewart. Thank you. Mr. Wicker. Glad to have you with us. ---------- Thursday, April 17, 1997. WITNESS KAREN PURVES, ANIMAL PROTECTION INSTITUTE Mr. Wicker. And I have deviated from the time constraints now. But we have with us from the Animal Protection Institute Ms. Karen Purves. And Ms. Purves, we are glad to have you, and you may proceed. Ms. Purves. Hopefully my testimony will be particularly interesting to you for two reasons. Number one, I have some dazzling visuals for you to see. And number two, I am going to talk to you about a way to save money. I am not going to ask you to spend more money. That is what I am here to do. The focus of my presentation today is on cigarette smoking and nicotine research funded by the National Institutes of Health. Occasionally, those of us who choose to work on animal issues as a profession---- Mr. Wicker. I noticed that pack of cigarettes and was glad that Dr. Cunningham had already left the room. Ms. Purves. Correct. I actually am going to refer to his testimony momentarily. But I just want to give myself a little bit of credibility. As I said, those of us who choose to work in the animal profession are often criticized or misunderstood as being anti- research or anti-science. And also not willing to really be cooperative with the system. I just want to assure you that neither I nor my organization that I represent are anti- science, anti-research, and I pride myself on working with the system to establish cooperative efforts. As Dr. Cunningham did mention, tobacco smoking is an epidemic. It is costing hundreds of billions of dollars in health care costs annually. However, I am here to say that spending, throwing more money at that problem is not necessarily the answer. I understand that the subcommittee and the Government as a whole needs to look at the macro picture. But I am here to tell you a little bit about the micro picture, and to say, well, we want 9 percent more money or we want $26 million more for our program, when people are advocating that, I am here to say, I have looked at the funding for 1996 National Institutes of Health for those research experiments on both humans and non-human animals in the specific areas of cigarette smoking and nicotine research. The findings, when I looked at that research, were very disturbing to me. Part of the problem is that as this New York Times article from 1958 showed, that there was a link between cigarette smoking and cancer, that the public was aware of it, this is not just what the tobacco industries were keeping privately, but what the public was aware of. In 1996, there were 123 abstracts that were funded through the National Institutes of Health, totaling over $28 million, specifically looking at cigarette smoking and nicotine research. Forty percent of that was on animals, non-human animals, and 60 percent of that was on human animals. I have two major concerns about this funding. First is those that appear to be duplicative of what we have already found to be true in humans, and second is those that are looking at such minutiae as not to appear to have relevance to either animals or humans. Both of these types of studies, which I would contend are the vast majority of both human and non-human animal studies that were funded by the NIH in 1996, I would contend, are a complete waste of taxpayer dollars. I am not advocating throwing the baby out with the bath water. However, I am submitting that nearly all the research on non-human animals by the NIH in this area appears to be research for research's sake. Therefore, I am requesting that you consider eliminating future funding beginning in fiscal year 1998 of non-human animal experiments in the areas of cigarette smoking and nicotine research. I think that before another penny is spent, taxpayers have a right to be educated on what we have learned from previous research. What is being funded? First of all, I would like to say that three out of every four abstracts that are submitted to the National Institutes of Health are denied because of limited funding. So the research that is being funded is considered to be the creme de la creme, can we say. For every dollar that is spent needlessly on wasteful research is a dollar taken away from research that would appear to be more promising. One thing that I found particularly disturbing is when looking at cigarette smoking and nicotine research, nine of the institutes were funding research in this area. It would appear to me to have less duplication within a particular calendar year or between calendar years, that the funding would be limited to a single institute. What are some samples of the research that is going on? In 1996, two of the studies, one, rats will be chronically treated with nicotine to see its effects on the immune system. This was documented in 1952 in humans. In 1996, rhesus monkeys would be taught to self-administer nicotine to evaluate the reinforcing effects of nicotine. The reinforcing effects of nicotine have been documented in humans since at least 1977. This particular research has been funded for 17 prior year, to 1996 for this particular research. As far as the research looking at the minutiae, basic research looking at the details of cigarette smoking and nicotine research, my favorite, we spent over $100,000 at Tufts University to study the manduca sexta, otherwise known as the tobacco hornworm, to understand its ``low sensitivity to nicotine.'' Also, rhesus monkeys will be subject to acute and chronic administration of caffeine and nicotine. This is one of our closest human relatives in 1996. We have 43 million smokers in the United States, many of whom are addicted to caffeinated products, both coffee as well as carbonated beverages. I would think that of those 43 million people, we could get more people to willingly become a part of a study that looks at both caffeine, taking in caffeine as well as smoking cigarettes. So API recommends simply not spending the money that would have been spent on these projects. One final note, I did write to six different researchers that I found who had specifically studied something that had been elucidated in humans prior to that. And not one of the six researchers responded to my inquiry letters. So in closing, I would urge that you consider eliminating or reducing the 1998 and beyond appropriations specifically for research primarily concerned with cigarette smoke and nicotine on human animals. Let's spend all of our money a little more wisely. Thank you. Do I have any more seconds to show you some more visuals? [The prepared statement of Karen Purves follows:] [Pages 1146 - 1153--The official Committee record contains additional material here.] Mr. Wicker. No, but the record will be open, and you certainly made a very fine presentation. I will follow up with some of the grantees with regard to whether we are discovering things over and over with regard to nicotine. Ms. Purves. I would be happy to provide any additional information. Mr. Wicker. Let me just ask, were the rhesus monkeys really disadvantaged by the caffeine? Ms. Purves. I was looking at the nicotine aspect. But actually, they find that the interaction of when you do ingest nicotine as well as caffeine, the effects are different than if you just are ingesting caffeine as opposed to just ingesting nicotine. Mr. Wicker. Thank you so much. ---------- Thursday, April 17, 1997. WITNESS DAVID M. GIBSON, ASSOCIATION OF SCHOOLS OF ALLIED HEALTH PROFESSIONS Mr. Wicker. Dr. David M. Gibson, Dean of the School of Health Related Professions at the University of Medicine and Dentistry of New Jersey, on behalf of the Association of Schools of Allied Health Professions. Dr. Gibson. Mr. Gibson. Thank you, Mr. Chairman. I would like to start by saying that any savings that might have been accrued from our previous speaker might be well applied to what follows. [Laughter.] I am David Gibson, Chairman of the Government Relations Committee of the Association of Schools of Allied Health Professions, a not-for-profit organization representing 93 higher education institutions as well as hundreds of individual members. The professions themselves provide numerous services, including primary care and work in all types of health care settings. Allied health care personnel are responsible for the delivery of health or health related services involving the identification, evaluation and prevention of diseases and disorders, dietary and nutrition services and rehabilitation and health systems management. Our association believes the Federal Government has a central role to play in assuring that the Nation has an adequate supply of competently prepared faculty andpractitioners in the allied health professions, especially to attract students, especially those from minority and under-served portions of our population. Funding for the Section 767 Allied Health Grants program under Title VII last was authorized at $5 million. During the past seven years, approximately 700 applications were received by the U.S. Public Health Service, but money was available to fund but 10 percent of those. Mr. Chairman, a brief summary of what has been accomplished utilizing very, very little of the Federal dollars allocated to us follows. Grants have been awarded to a variety of post-secondary institutions and consortia, involving approximately 40 allied health disciplines in more than 30 States, including awards to historically black colleges and universities. Close to 2,000 academic clinical faculty have participated in workshops and short term training programs. More than 12,300 students have been or are being educated as a result of expanded enrollment. Almost 14,000 combined practitioners and patients collaborated in geriatric assessments and rehabilitation activities. Student recruitment and retention activities have affected almost 9,000 individuals, 95 percent of whom are either minority or disadvantaged students. Sixty-two percent of the grant programs have resulted in substantive curricular changes such as in geriatrics, and 41 percent of these grants include interdisciplinary education and training. Fifty thousand monographs and 750 video tapes are currently being distributed to schools of health related professions and allied health through the United States as we speak. Our constituents have met and have exceeded their stated proposals, goals and objectives. Thus, these grants have proven to be sound health care and educational investments. Mr. Chairman, the National Commission on Allied Health, which was established under Public Law 102-408, has issued its final report two years ago this month. Among the recommendations germane to Congress are the following. Support allied health research, service and training demonstrations to test high quality lower cost allied health efforts as a substitute to more expensive medical or institutional services. Authorize the Secretary of the Department of Health and Human Services to establish an office of allied health professions within HRSA and support strengthening and expanding interdisciplinary and core curricula clinical practice programs to meet work force needs. We endorse these recommendations and urge Congressional support of $10 million to achieve their implementation. In addition, we ask that you consider another important recommendation of the National Commission to provide $5 million for the Agency on Health Care Policy Research each year for five years to support outcome based research projects. Mr. Chairman, as you know, our health care system is undergoing rapid dramatic and increasingly complex change. Hospital centers, specialty care, is being focused away and moved to, in a significant degree, to a system in which health care personnel must network together in health care networks and managed care networks. Curriculum changes are needed and they are needed desperately and quickly. Currently the only source of funding that we have under Section 767 grants program and another grant for $5 million was never funded. We ask consideration of this $5 million funding for Section 766, which would make it possible for us to develop faculty for our schools and universities. I would close, Mr. Chairman, by noting that even though we are approximately 2 million strong, we have less than 2 percent of the Labor-HHS appropriations. We ask your continued assistance as we move forward and bring qualified, certified individuals to the health care of the American people. I ask to leave the rest of my testimony with the committee. And I thank you. [The prepared statement of David Gibson follows:] [Pages 1157 - 1166--The official Committee record contains additional material here.] Mr. Wicker. I thank you, and certainly your entire testimony will be included in the record. Mr. Gibson. Thank you. Mr. Wicker. Thank you so much, and good luck. ---------- Thursday, April 17, 1997. WITNESS DONALD J. REED, ASSOCIATION OF UNIVERSITY ENVIRONMENTAL HEALTH SCIENCES CENTERS Mr. Wicker. Don Reed, Professor of Biochemistry, representing the Association of University Environmental Health Science Centers. Mr. Reed. Thank you, Mr. Chairman, members of the committee, ladies and gentlemen. I want to thank you for giving me this opportunity to testify on behalf of appropriations for the National Institute of Environmental Health Sciences and especially for the NIEHS supported environmental health sciences center program. One of the smallest NIH institutes, NIEHS achieves its mission through multidisciplinary biomedical research programs, prevention and intervention efforts, and communication strategies that encompass training, education, technology transfer and community outreach. NIEHS has wisely chosen to develop an environmental genome project to join forces with the newly created National Human Genome Research Institute. A new effort by NIEHS is the use of transgenic mouse models for rapid identification of environmental mutagens and carcinogens. These cancer susceptible mice will reduce the number of animals, time and costs for these tests. Major participants in the NIEHS mission are the 26 university based centers that have research and teaching programs with community outreach aimed at disease prevention, with an emphasis on the illnesses of special populations, women, children and minorities, who are most vulnerable to many environmental exposures. In the 30 years of their existence, the NIEHS centers have contributed substantially to the prevention of environmentally related diseases in the United States and abroad. For example, NIEHS centers at Harvard and New York University provided the comprehensive scientific basis for air pollution control. Obviously, with the present controversy over particles in the air, much more research is needed. Let me cite a few specific examples of how the NIEHS centers continue to contribute to the prevention of disease. At the University of Miami Center, marine natural toxins were found to reduce immunocompetence and weaken the immune system. Now there is the potential for introducing immunization regimes against these toxins. At Oregon State University, my university, the possible role of food plant chlorophyll, the green material in plants, is being studied for cancer prevention. At Columbia University Center, researchers have described a new hypothesis that a variant of a specific gene may represent susceptibility to Parkinson's disease. The Vanderbilt University Center reported a major finding about the genetic and environmental contributions to Alzheimer's disease. The NIEHC center at MIT has developed a means to measure mutations directly in the DNA of normal human tissue. At the University of Washington, researchers have determined that a genetic difference may make certain people more susceptible to toxic effects of some pesticides, and a new avenue for treatment of chronic pesticide and nerve gas poisoning is being developed. Center investigators at the University of Texas Medical Branch, Galveston and Vanderbilt University have teamed up to provide a new design for a drug against AIDS. Until now, tobacco carcinogens and lung cancer possessed a very strong but not a direct association. The NIEHS center at the University of Texas, Smithville, has described the first molecular evidence directly linking a cigarette carcinogen, benzopyrene, and human lung cancer. Mr. Chairman, our strategies must be based on the best possible science and risk assessments. Without the best science, we risk not providing enough protection or conversely, the risk of unnecessary public concern and public expense. This is a key reason why the research conducted at NIEHS centers is so important to our Nation's health. Sound scientific data allows sound public policy. In conclusion, even with severe budget constraints on Congress, we urge that your committee fund the environmentalhealth needs of this country with an increased appropriation of 9 percent to NIEHS. The many scientific opportunities of today would justify a much larger increase. However, any increase you can provide the NIEHS will be a very sound investment in outstanding science and enhance the intervention and prevention efforts targeted to the environmental health needs of our citizens. Thank you. [Clerk 's Note.--Information required pursuant to clause 2(g)(4) of Rule XI of the rules of the House of Representatives was not received from this witness or from an entity represented by this witness.] [The prepared statement of Donald Reed follows:] [Pages 1169 - 1176--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Dr. Reed. ---------- Thursday, April 17, 1997. WITNESS HARVEY FRIEDMAN, BLUE CROSS BLUE SHIELD ASSOCIATION Mr. Wicker. Our final witness this afternoon is Harvey Friedman, Vice President, Medicare Administration for Blue Cross and Blue Shield Association. Mr. Friedman. Thank you, Congressman. I am here today on behalf of the Blue Cross Blue Shield Association and those Blue Cross Blue Shield plans who are Medicare carriers and fiscal intermediaries. Blue Cross and Blue Shield plans are the major Medicare contractors for the Health Care Financing Administration, processing about 90 percent of Medicare Part A claims and about two-thirds of Medicare Part B claims. We are very concerned that the Administration's recommended contractor funding level for 1998 is entirely inadequate. Particularly problematic is the proposal to reduce the amount budgeted for claims processing by 17 percent, compared to fiscal year 1997. The impact of this cut would be a deterioration in beneficiary and provider services, including reduced claims payment timeliness and decreased responsiveness to beneficiary and provider inquiries and appeals, and the possibility of additional resignations by Medicare contractors because of their inability to effectively manage the work loads within the proposed budget. Funding constraints have been a contributing factor in recent contractor resignations, including several Blue Cross Blue Shield plans and Aetna. Based on this recent history, we must conclude that more contractors would be likely to exit the program next year if the Administration's budget proposal is approved in its current form. For the past several years, Medicare claims volume has grown almost three times faster than the funds available to manage the incoming work load. Our written testimony contains more detailed information on the work load volumes for fiscal year 1998. Let me highlight a few. In fiscal year 1998, Medicare contractors will be expected to pay almost 900 million claims, more than 3 million each work day; respond to over 40 million telephone and written inquiries from beneficiaries and providers; and handle over 7 million appeals for reconsideration of the initial claims determination. Claims processing activities represent the largest portion of the contractor budget. Adequate funding for these responsibilities is essential to avoid backlogs and payment delays. Claims payment is also the first line of defense against fraud, abuse and overpayment. Claims processing funds support a number of safeguards designed to detect duplicate payments, assure that payments are made for Medicare eligibles, determine non-covered services, and make reasonable charge reductions in Medicare Part B. When the total claims payment budget is divided by the number of claims estimated to be paid in fiscal year 1998, HCFA's budget proposes to reduce basic claims processing unit costs by approximately 17 percent from 1997 to 1998. We believe that reduction is understated, and that the budget decrease may be closer to 20 percent. Contractors have been able to reduce the cost of claims processing in the past largely by increasing the numbers of electronic claims. This has been extremely successful. However, while some further cost efficiencies can be achieved in this way, the magnitude of these savings will be much smaller, because the majority of health care providers, especially hospitals and other large volume providers, have already made the shift to computerized billing. Currently, over 95 percent of Medicare Part A and 75 percent of Medicare Part B claims are submitted electronically. In conclusion, Mr. Chairman, as budgets become tighter and appropriations are focused on the cost effectiveness of each and every dollar spent, we believe that Congress will find that funding for the Medicare Administration is well spent. Medicare contractors have an incredible record of efficiency. Contractors' administrative costs represent less than 1 percent of total Medicare benefits. At some point, living within the same or reduced funding levels as work loads increase significantly is simply not possible without serious ramifications. Funding for Medicare contractors to manage Medicare's project $230 billion budget must keep pace with the growing claims work load. We look forward to working with you this year to maintain Medicare's high level of service to its beneficiaries, while continuing to improve the efficiency of its operation. Thank you very much. I would be pleased to answer any questions. [The prepared statement of Harvey Friedman follows:] [Pages 1179 - 1187--The official Committee record contains additional material here.] Mr. Wicker. Thank you very much, Mr. Friedman. We appreciate your attendance today. There being nothing further before the subcommittee, we are adjourned until Wednesday next at 10:00 a.m. Thank you very much. ---------- Wednesday, April 23, 1997. WITNESS RANDALL C. MORGAN, JR., M.D., NATIONAL MEDICAL ASSOCIATION Mr. Istook [assuming chair]. Ladies and gentlemen, I think we are ready to proceed. Those who have not already taken a chair might do so. I am Congressman Istook and also on the panel this morning is Congressman Stokes from Ohio. Let me assure you that although not all members of the subcommittee are present, remarks will be placed in the record. We have staff members from other offices here. And even if they are not reviewed in person, I can assure you they are reviewed from the record of the subcommittee. We appreciate the fact that so many of you have come significant distances to be here today to testify, and I hope also to contact your own members of Congress. As we begin the hearing this morning, I do want to remind the witnesses that we have two new provisions that the House has adopted in its rules. In addition to the written statement, non-Governmental witnesses are required to submit a curriculum vitae and a statement concerning Federal grants or contract fund that they have received or the entity which they represent has received. If you have not already done so, if you have any questions about these provisions, please contact the subcommittee staff. They will help you make arrangements on that. Otherwise, it is possible that your testimony may be stricken from the record if we do not receive that disclosure. Finally, our schedule this morning, as typical, is very tight. The five minute rule on the testimony of each witness must be strictly enforced. I will try to give, with the gavel or some other tap, an indication when you are at about four minutes and 30 seconds, so if you need to kind of reword or rephrase some things and wrap it up quickly, you will have the chance to do so before I have to cut you off at the five minute mark. So I appreciate your consideration for the others that are also here to testify. I believe our first witness is from the National Medical Association, Dr. Randall Morgan, Jr. Dr. Morgan, if you would please take the seat there, and I believe Congressman Stokes has some remarks he wants to share. Mr. Stokes. Thank you very much, Mr. Chairman. Dr. Randall Morgan appears here, Mr. Chairman, for the first time. And he appears here also at my invitation. Dr. Morgan is President of the National Medical Association. This is an organization founded in 1895 in Atlanta, Georgia, by 12 African-American physicians who had previously been excluded from membership in the American Medical Association. Today, this organization represents over 22,000 African-American physicians throughout the United States and its territories. Dr. Randall Morgan is presently a clinical associate for the Department of Orthopedic Surgery at Northwestern University, where he has been for 23 years. He is also the clinical assistant professor of orthopedics at Indiana University, Northwest Center for Medical Education, and a clinical instructor for the Department of Orthopedic Surgery at Howard University. We are very pleased, Mr. Chairman, to be able to welcome him before our subcommittee this morning. I thank you. Mr. Istook. Thank you, Mr. Stokes. Dr. Morgan, of course, you'll have your full five minutes. We are certainly glad that you are here. Dr. Morgan. Thank you, Mr. Chairman, and also Congressman Stokes and members of the subcommittee. Thank you for this opportunity to present the views of the National Medical Association. I am a practicing orthopedic surgeon in Gary, Indiana. The major goals of our association are to improve the health status of minorities in the community, and to increase the representation of African- Americans and other under-represented groups in medicine. Mr. Chairman, the programs supported by your subcommittee represent a critical Federal link to solving these identified national priorities. Working closely with this subcommittee and Federal agencies, the National Medical Association is committed to ensuring that the advances made through biomedical research, health professions training and community based public health and disease control are equally available to all Americans, particularly those who have not fully benefited from these advances. The long term prospects for improving the health status disparities that exist among minorities in this country hinges on a strong Federal commitment to biomedical research. This committee is to be commended for its support of the National Institutes of Health in the face of declining discretionary dollars. Yet, in order to fully realize the benefits of scientific investigation, much more needs to be done by NIH and policy makers to ensure that those who are suffering disproportionately are able to share in all of these advances. Throughout the NIH, there are a variety of programs focused on improving the biomedical commitment to study health disparities that exist among minorities when compared to the general population. They include the minority biomedical research service, minority access to research careers, research centers at minority institutions, and the minority health initiative. As a starting point, we believe that as increased funding is made available to NIH, this subcommittee and the NIH leadership should specify those programs which focus upon improving minority health. These programs should receive a proportionate increase in funding to that of NIH overall. In recent years, unfortunately, this has not occurred. We believe that a policy such as this is long overdue. In order to increase the participation of minority patients in clinical research, minority physicians must be encouraged to become research scientists. Clearly, every responsible study ever conducted demonstrates that African-Americans and other minorities are more likely to serve in medically under-served areas than are their non-minority counterparts. Even though African-Americans represent 12 percent of the population in the United States, only approximately 2.5 percent are physicians or other health professionals. If it is a national priority to narrow the health status gap that exists among minorities and non-minority populations, then it is imperative that we increase the number of minorities serving in the health professions. Health professions training initiatives at HRSA are helping to address these disparities through the minority centers of excellence programs, the health career opportunities program, the exceptional financial needs program and scholarships for disadvantaged students. This subcommittee's continued support for these initiatives is vital to ensuring that a bright, capable minority who otherwise would aspire to a health professions career if it were not for the financial burden and matriculation challenges, there is an opportunity for that person to become a physician, dentist, pharmacist, nurse, or other health professional. Health status changes that exist in this country are magnified in under-served minority communities. African- Americans suffer almost double the rate of infant mortality compared to whites. Cancer, diabetes, hypertension and stroke rates are disproportionately higher among African-Americans and among Hispanics compared to the non-minority population. The injury rate for African-American children age 1 to 14 is 55 percent higher than for white children. Youth violence has become a public health epidemic, with homicide being the second leading cause of death for young people between the ages of 15 and 24, and the leading cause of death for African- American death in the same age group. Twenty-nine percent of all AIDS cases in the United States are among African- Americans, even though they represent only 12 percent of the population. The NMA has initiated a partnership with HCFA in an effort to understand the impact of managed care on minority providers and patients, particularly Medicaid beneficiaries. Plans are underway to collect data to analyze these issues formally. The NMA strongly encourages continued support for HCFA to allow for advancement of this effort. Mr. Chairman, thank you for the opportunity to present the views of the National Medical Association. I would be pleased to respond to any questions you or the subcommittee might have, or want to address to us in the future. Thank you very kindly. [The prepared statement of Randall Morgan, M.D., follows:] [Pages 1192 - 1198--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Dr. Morgan. Mr. Stokes, did you have any questions? Mr. Stokes. Nothing further, Mr. Chairman. Thank you very much. Mr. Istook. Dr. Morgan, we very much appreciate your testimony. Dr. Morgan. Thank you. ---------- Wednesday, April 23, 1997. WITNESS STANLEY O. IKENBERRY, AMERICAN COUNCIL ON EDUCATION Mr. Istook. I believe our next witness is from the American Council on Education, Mr. Ikenberry, Stanley Ikenberry, thank you for coming. Mr. Ikenberry. Thank you, Mr. Chairman. It is a pleasure to be here. I am Stanley Ikenberry, former president of the University of Illinois for some 16 years, and now president of the American Council on Education here in the city. We are the Nation's principal coordinating body for higher education in this country, both public and private, large and small, two and four year institutions nationwide. And also affiliated with our institution are numerous, both national and regional higher education associations, 26 of whom have signed in support of my testimony that is filed with the committee. If I may, Mr. Chairman, I would just like to make a few brief comments and then would be pleased to respond to any questions that you or members of the committee might have. First, I want to thank you, very frankly, for giving us the opportunity to testify here this morning and also for the support this committee has provided to higher education over a number of years, but particularly at the present time in the context of strained Federal budgets. This country has a strong diverse locally controlled system of higher education. It serves over 14 million students, it involves over 3,700 institutions. It shapes the professions, we provide over one half of the Nation's biomedical research. It influences health care, telecommunications, computing, agriculture and a vast array of other aspects of our Nation. By strengthening student aid, by supporting biomedical research, by granting us access to this hearing, you help keep that system strong. I want to thank you for that. I would like to concentrate just quickly on two points. First is that I think the opportunity for the 105th Congress and the significance of the higher education policy issues before you is in many ways unprecedented. This is true because of both the breadth of the proposals that are before you and the significance of several of these. I would like to concentrate on just one of these aspects, that is the Pell Grant program that provides the fundamental foundation, if you will, for access to higher education in this country. It in effect is a needs-based voucher system that is transferrable to any institution, any accredited institution in this country. It is transferrable where the student decides the student wants to go, in a particular State where that student is a resident or nationally or to any institution in this country. It is the centerpiece, if you will, of access and choice among higher education options in America. Over the last two years, the Pell Grant maximum award has improved considerably, but earlier in the decade, since 1979, it has lost considerably in its purchasing power. Two years ago, the Pell Grant was worth roughly 60 cents on the dollar in terms of its 1979 value. Last year, through the actions of this committee and the Congress, you have restored that purchasing power now up to about 66, 67 cents on the dollar. There are proposals now to move the Pell Grant maximum award level to $3,000 per student, and to broaden the eligibility of the program. If that were improved, it would improve the purchasing power still further to 75 cents on the dollar. I hope the committee will give careful consideration and if at all, find it possible that you will give your strong support and endorsement to continuing to improve Pell Grant maximums and to restore the lost purchasing power for that program. It is so vital to the future of higher education. Second, I want to say just a word about college costs, because I know that members of this committee are concerned about this, members of the public are concerned about it. And very frankly, our colleges and universities are concerned as well. The goal of higher education in this country is to attract students and to provide opportunity and certainly not to push students away by the result of fear of cost pressures. Colleges and universities are making a significant effort to try to do that. In fact, the rate of tuition increases is coming down. I think this year we will continue to see progress on that in the 3 to 5 percent range very close to inflation levels. Mr. Chairman, there is a chart in the back of my testimony to which I would call attention that shows the importance of student aid in helping keep costs down, both at institutions and providing access for students. Let me conclude my testimony, however, within the limits of the committee, and I would be pleased to respond to any questions that you or Congressman Stokes might have. [The prepared statement of Stanley Ikenberry follows:] [Pages 1201 - 1212--The official Committee record contains additional material here.] Mr. Istook. Okay, we appreciate very much your testimony, Mr. Ikenberry. Mr. Stokes, did you have any questions? Mr. Stokes. No questions. Mr. Istook. All right. And certainly, as a father with three children in college this fall, I can appreciate what you say. [Laughter.] Thank you very much for coming. Mr. Ikenberry. Thank you, sir, I appreciate the opportunity. ---------- Wednesday, April 23, 1997. WITNESS GINA CIOFFI, COOLEY'S ANEMIA FOUNDATION Mr. Istook. I believe our next witness is Gina Cioffi, of Cooley's Anemia Foundation. Thank you very much for being with us. Please proceed. Ms. Cioffi. Thank you. Good morning, Mr. Chairman, and members of the committee. My name is Gina Cioffi, I am the National Executive Director of the Cooley's Anemia Foundation. Our organization raises medical research dollars and has awarded millions in fellowships. I am honored to appear before you to thank you for your past leadership and urge you to step forward again to support Cooley's anemia patients, our families and the 2 million Americans who carry the genetic trait for Cooley's anemia. Mr. Chairman, by making the National Institutes of Health one of the highest priorities for Federal funding, the leadership of this subcommittee and its chairman give hope to children and their families who are dealing with this disease. When a child requires more than 30 blood transfusions a year, every year of their life, as our patients do, when a child has to be painfully infused with the drug Desferal 12 hours a day, every day of their lives, as our children do, when families have to put so many aspects of their lives on hold to deal with Cooley's anemia, as our families do, it is critical that they have the one intangible that this subcommittee can give: hope. They need to have the hope that results from knowing that persons who are in a position to develop better and less invasive treatments, the gene and hormonal therapies, and ultimately the cures, are there working for them. Our patients have that hope, because of the important work being done at Heart, Lung and Blood under Dr. Lenfant, and at NIDDK, under Dr. Gorden. But they also have that hope because of this subcommittee and this Congress. Our written statement goes into more detail about a large number of research and treatment issues that confront the Cooley's anemia community. This morning, I would like to concentrate on the development of a collaborative clinical research network to conduct Cooley's anemia research and the related issue of blood safety. Last year, the Heart, Lung and Blood Institute convened a Special Emphasis Panel on New Therapies for Thalassemia, that is the medical name for Cooley's anemia. The panel's strongest recommendation was that the institute establish a network of collaborative clinical centers to study the effectiveness of new clinical interventions which may reduce the morbidity and mortality of Cooley's anemia patients. According to the minutes of the panel, since no single clinical center has enough patients to undertake a meaningful study, a collaborative clinical network is considered to be the most efficient and cost effective plan to undertake this translational research. Such a network would ensure that common protocols are followed for the five areas of clinical study cited by the panel. I recently returned from an international conference on thalassemia and can report that three new oral chelator drugs will be ready for clinical trials within the next two years. Having this network up and running by that time will facilitate bringing these drugs to the patients who need them. The establishment of a clinical network can serve as a model for future development of such networks for groups with relatively small patient population bases. These networks have been widely used with large population groups, but are equally well suited for small groups where no single center has a sufficiently large population to conduct scientifically valid clinical studies that we need. Another example of the possible use of this network extends beyond our patient population. Our patients are the largest single group of chronically transfused patients. The average patient has a transfusion every 10 to 14 days. As a result, they are a walking test case for the safety of the blood supply. Working closely with the FDA and Centers for Disease Control and Prevention, Heart, Lung and Blood can use this network to monitor the safety of the blood supply on a daily basis. This would provide timely information that would be critically important for our patients, as well as the general surgical and trauma patients who may require transfused blood. To stay alive, our patients undergo 12 hours of daily painful treatment, in addition to the blood transfusions. The establishment of the clinical centers will bring us closer to the day where treatments and even a cure for Cooley's anemia will relieve this burden. Toward this end, Mr. Chairman, I would like to request that the subcommittee consider the recommendation to fund the institutes at the 9 percent increase. And thank you for your time this morning. I would be happy to answer any questions. [The prepared statement of Gina Cioffi follows:] [Pages 1215 - 1223--The official Committee record contains additional material here.] Mr. Istook. Thank you very much for your testimony and for coming. We appreciate it. I want to express appreciation to all of the witnesses, you have been very helpful and cooperating and sticking with the time schedule that we have. I want to thank you for that. ---------- Wednesday, April 23, 1997. WITNESSES ERIKA MUSSER GAYLEN KAPPERMAN, BRAILLE TRAINING Mr. Istook. We have Erika Musser and Professor Gaylen Kapperman, representing Braille Training. I do not know which of you to recognize first, but the time is yours, and please go right ahead. Ms. Musser. I used to come alone, and now I bring Dr. Gaylen Kapperman with me. I am Erika Musser, as you said. I am a mother of a totally blind daughter, and I have adopted, as my mission to raise an awareness among members of Congress, that braille literacy enhances the options for education and opens the doors for job opportunities for blind Americans. Recently, Secretary of Education Richard Riley initiated a national campaign to raise public awareness of and support for literacy, saying that, ``Literacy is about more than just reading well. Literacy is about living well.'' He also claimed that literacy is the key that unlocks the world of employment. Congress cannot exclude blind Americans from this ambitious education agenda. Presently, the braille literacy rate among blind Americans is still only 12 percent. We must drastically raise this figure. Among working age blind Americans approximately 70 percent are unemployed. We must drastically reduce this figure. President Carl Augusto of the American Foundation for the Blind, who is an enthusiastic braille reader, and Chairperson Marca Bristo of the National Council on Disability join me in the promotion of braille as a tool for equality to life and learning. I kindly ask this committee for an appropriation of $1 million for fiscal year 1998. I feel very honored to introduce to this committee Dr. Gaylen Kapperman of Northern Illinois University. In the past, he has received two braille training project grants from the Rehabilitation Services Administration. His contribution and dedication to reduce Braille illiteracy are highly commendable. I would like that he shares with you his work and his findings. Thank you. Mr. Istook. Thank you. Doctor. Mr. Kapperman. Yes, thank you very much for giving me the opportunity to speak to the issue of braille literacy. As is obvious, I am a braille reader myself. I have read braille for approximately the last 15 years. I have a deteriorating eye disease which eventually will cause me to become totally blind. I can speak from personal experience the benefits of being able to read braille. For example, I have my, these are trivial examples to everybody else, but they are not to us who are blind. My microwave oven has braille labels on it, stove, washer, dryer, my treadmill, all these things. If I could not read braille, I would not even be able to operate a microwave oven to pop a bag of popcorn. It is an extraordinarily humiliating, degrading experience to have to ask the sighted members of your family and friends to do these simple tasks that everybody else takes for granted. I think that everybody here would agree with me that being able to read is extraordinarily valuable to hold significant employment. There are, as Ms. Musser has indicated, there are thousands of blind people in this country who cannot do that, who cannot read, who have no reading method. Since 1994, the Federal Government has committed $2 million to the effort to combat illiteracy among blind people. This has resulted in projects which emanated from the Rehabilitation Services Administration under the auspices of the Rehabilitation Act, Title VIII. These projects were well developed and they made significant contributions. But they do not represent the full, complete solution to the problem of illiteracy among blind people. There are several areas that still need to be attacked. Teaching braille to speakers of English as a second language, teaching braille to multi-handicapped individuals, braille music, braille mathematics, all of these require significant work and have been neglected over the years. This is seen as a national problem. State governments are loathe to contribute any money to the solution of this problem. Philanthropic organizations are overwhelmed with good causes. And our hopes and dreams depend upon the Federal Government. It is my understanding that at the present time, in the reauthorization of the Rehab Act, there is no mention whatsoever of braille literacy. We would urge that braille literacy be placed in the reauthorization draft of the Rehabilitation Act. Thank you very much. [The prepared statement of Erika Musser and Gaylen Kapperman follows:] [Pages 1226 - 1239--The official Committee record contains additional material here.] Mr. Istook. Thank you very much. I appreciate each of you coming. I am sure that if you have not done so yourself, we will make sure that your comments about the Reauthorization Act are relayed to the authorizing committee as well. Mr. Kapperman. Thank you very much. Ms. Musser. Thank you very much. Mr. Istook. Thank you. Appreciate your coming. ---------- Wednesday, April 23, 1997. WITNESS ELAINE WILLIAMS, AMERICAN NURSES ASSOCIATION Mr. Istook. From the American Nurses Association, I believe our next witness is Elaine Williams. Ms. Williams, welcome. You may or may not be aware that my wife is a registered nurse. So I certainly hear things from her about your profession, and I appreciate your coming this morning to fill us in further. Ms. Williams. That makes me feel really good. [Laughter.] Mr. Istook. She's a very good nurse. Ms. Williams. I know she is. Mr. Istook. But let me tell you, I sometimes meet some of the patients that she serves, and they seem to be very appreciative of her. She has a good, good manner with people. But please go ahead with your testimony. Ms. Williams. Thank you. Good morning, Mr. Chairman and members of this distinguished subcommittee. I am Elaine Williams, a nurse practitioner in the Department of General Surgery at Cook County Hospital in Chicago. I ask that my oral statement as well as my written, be included in the record today. Today, I appear on behalf of the American Nurses Association, and its 53 constituent States and territorial nurses associations, joined by the Emergency Nurses Association. In our written testimony, we have addressed a number of programs we believe to be important to nursing and health care in our Nation, including programs related to work force health and safety. As an advocate for the economic and general welfare of registered nurses, the American Nurses Association also recommends appropriate funding for the Department of Labor and related agencies that serve to ensure a safe and fair work place. This morning, I will focus my remarks on our interest in funding for nursing education and research. This subcommittee continues to recognize the importance of nurses in the delivery of health care, and I am glad that we have someone on the committee that has a nurse in the family. It has funded these programs which serve to develop innovative practice models to better serve the public. We gratefully acknowledge this subcommittee's report, and we recognize that you will continue to make difficult choices in this year's appropriations, especially in light of the President's fiscal year 1998 budget proposal, which disseminates funding for nursing education programs. Although the nursing community at large is outraged with the Administration's proposal, we believe that our shared mutual goals of ensuring the Nation of an adequate supply of well educated nurses will reaffirm the need for continued funding of these programs. Mr. Chairman, dramatic changes in our health care system are continuing at breakneck speed. Although nurses are aware of these changes and the consequences, patients seldom are until they become directly faced with situations such as the following: premature discharge after a mastectomy, discharges 23 hours after surgery; 12 hour maternity and newborn hospital stays, which prompted Federal legislation to mandate minimum length of stay; staffing situations so dire that patients had to call 911 to get help while they were in the hospital; managed care plans that require pre-approval before patients can receive treatment in emergency situations. These changes in our health care system have been influenced by many factors, including the demand to cut costs, and consequent changes in insurance market. The role the for- profits are playing in the health care industry, including dramatic increases in market shares, the aging and increasing diversity of the United States population. The ongoing advances in medical technology. The increasing levels of acuity in hospitalized patients, and the strain placed on our resources by long term care issues such as cancer, chronic diseases in children, the elderly and AIDS. These changes have increased the intensity of nursing care required for these patients. Hospitals are becoming large intensive care units. Not only are we seeing more acutely ill patients in the hospital setting, but we are also seeing acutely ill patients discharged to their home or to long term care settings. The Institute of Medicine study released in January of 1996 concluded that these very transient health care delivery have important implications for the preparation of nurses. We just want to go on to emphasize that Federal support of nursing education in Title VIII is essential to the future goals of public health. It also works to increase the number of minority nurses available to provide culturally competent health care to the under-served communities. We are requesting funding for $65.3 million for the program funded under the Nurse Education Act. We are also asking on priority for nursing research. We applaud the committee's commitment to advancing behavioral science research. We support the Administration's proposed funding level of $61 million for this program and would welcome funding in our professional judgment recommendation of 9 percent over fiscal year 1997. We appreciate this opportunity to comment on funding for nursing education and research programs, and we thank you for your continued support. Thank you very much. [The prepared statement of Elaine Williams follows:] [Pages 1242 - 1250--The official Committee record contains additional material here.] Mr. Istook. Thank you, Ms. Williams. I know you were not able to get all of your testimony in, but of course the remainder of the written portion will be in the record. Ms. Williams. Okay, thank you very much. Mr. Istook. We certainly appreciate your coming. Ms. Williams. Say hello to your wife. [Laughter.] Mr. Istook. I will do that. I would be in big trouble if I did not. [Laughter.] ---------- Wednesday, April 23, 1997. WITNESS JOHN SUTTIE, FEDERATION OF AMERICAN SOCIETIES FOR EXPERIMENTAL BIOLOGY Mr. Istook. Our next witness is Dr. John Suttie, representing the Federation of American Societies for Experimental Biology. Dr. Suttie, I do not have a research scientist in my immediate family. I am sorry. Mr. Suttie. Well, maybe. Mr. Istook. I have kids in college, though. Mr. Suttie. Still have hope, then. Mr. Chairman, I am John Suttie, Professor of Biochemistry and Nutritional Sciences at the University of Wisconsin. I am currently President of the Federation of American Societies for Experimental Biology, usually referred to as FASEB. In this latter role, I appear before you today in support of adequate funding for the National Institutes of Health. FASEB has joined with nearly 200 health advocacy organizations in asking that this subcommittee continue its remarkable bipartisan leadership on behalf of biomedical research and to approve an increase in funding for NIH for the fiscal year 1998 of 9 percent. As you are aware, this is the funding level identified by the NIH through its professional judgment process as the amount it believes can be effectively used this year. We ask that the subcommittee come as close as possible to this goal. While each sector of the research establishment brings its own different perspectives to this debate, all are here with one overarching goal: progress against the diseases and disabilities that continue to afflict the U.S. population and indeed, the peoples of the world. Other witnesses appearing before this subcommittee such as families fighting juvenile diabetes, Parkinson's caregivers, victims of breast cancer, AIDS or other diseases, represent the causes that the biomedical science committee to. While FASEB members are practitioners of molecular biology, biochemistry, anatomy, nutrition and other basic sciences, our cause is to apply our science to the reduction of human suffering caused by these diseases. The basic message of both the patient advocacy groups and the scientists whom I represent today is therefore the same: investment in medical research is the first and critical step in prevention, treatment and control of disease, which in turn will lead to longer, healthier and more active lives. As this subcommittee reviews our request for a 9 percent increase in funding for next year, we believe you should do so in the context of the remarkable accomplishments that past investments in NIH have produced. While I do not have time to review many of these, one example typifies these accomplishments. Skin cancer is the most common form of cancer, affecting more than 750,000 Americans each year. In recent research, with enormous implications for all of oncology, mutations in a recently identified human patched gene have been linked to the development of many forms of skin cancer. These findings follow from the discovery of a similar gene in fruit flies. This is an excellent example of the importance of basic, untargetted research, which at its onset would not have been identified as a special interest to cancer research. Mr. Chairman, in FASEB's role as a spokesman for the working scientists, I come to you not only as an advocate for biomedical research funding, but also to express our views on the approaches we as scientists believe will lead to the most productive science in the public interest. Our recommendations today, therefore, focus not only on the budget but also on the methods used to allocate funds among various programs and diseases, the so-called system of prioritization of NIH funding. This issue has been raised by several members during hearings before this committee, and will be the subject of further hearings next month. While I do not have time to address this issue in detail this morning, I will encourage the subcommittee as it reviews this important question to maintain its historic policy against targeting of research by disease as a basis for Congressional allocation of research funding. The decision to allocate funding to one area inevitably results in less to another. Whether another disease, or another avenue of basic science. These decisions cannot be made using simple mathematical models, comparisons or purely quantitative measures. Allocation decisions are fundamentally matters of judgment. It is FASEB's view as basic scientists, therefore, that the leadership at the NIH, in consultation with the Congress and with the public, is in the best position to make these Solomon- like choices. As one member of your subcommittee said earlier this year, let the science call the shots, not science in a vacuum, but science managed by the most broadly informed science managers with a constant goal of improving human health. In conclusion, Mr. Chairman, we at FASEB believe that the continuation and continuum of scientific discovery which this subcommittee has helped to put in place now makes possible real breakthroughs in many areas of human health. But continued robust support is necessary if this potential is to be realized. We know you and this subcommittee share our commitment to this cause, and will make every effort to provide to the NIH the resources that are needed. I will be pleased to answer any questions you might have. Thank you, Mr. Chairman. [The prepared statement of John Suttie follows:] [Pages 1253 - 1263--The official Committee record contains additional material here.] Mr. Istook. Dr. Suttie, we very much appreciate your testimony and the material you brought to us. I assure you, we will be going through that. Mr. Suttie. Thank you. Mr. Istook. Thank you. ---------- Wednesday, April 23, 1997. WITNESS FRANCES RAUSCHER, NATIONAL ASSOCIATION OF MUSIC MERCHANTS Mr. Istook. Dr. Frances Rauscher, of the University of Wisconsin. You are here from the National Association of Music Merchants. You are not going to sing your presentation or anything, are you? Ms. Rauscher. No, and I think you will be very grateful for that. Mr. Istook. Oh, I do not know. I enjoy music, and the important thing is that you enjoy it, too. Please go ahead. Ms. Rauscher. Thank you, Mr. Chairman. I have prepared a written statement and submitted it for the record, and I would just like to briefly summarize it for you here today. I greatly appreciate the opportunity to testify today. I am Frances Rauscher, and I am an assistant professor of child development at the University of Wisconsin. My specialty is on the effect of music on early brain development and cognition. I am here on behalf of the National Association of Music Merchants, which represents over 6,000 retailers and manufacturers in the music products industry. NAMM and other private organizations have generously supported our research back to 1989, when we first discovered this link between music and intelligence. They recognize its importance for enhancing early childhood cognition and also its applications for education. Congress and the Administration have placed a high priority on making the Nation a better place for all our children. The research that Gordon Shaw of the University of California at Irvine and I have done shows the powerful impact that music has on helping children to reach their full potential in, of all things, math and science. Based on recent neurophysiological modeling and also research, we have conducted a series of studies that shows that early instruction in music can cultivate the brain's neural firing patterns that are also responsible for abstract reasoning. In our most recent study, children who were provided with keyboard lessons for six months scored significantly higher than children in control groups, 34 percent higher, to be exact. We believe that this early musical enrichment is causing a permanent neurophysiological change in these children's brains. These are changes that increase their ability to reason abstractly in areas that most children and adults find very difficult, particularly as we enter this new age of technology. Last month, I demonstrated that kindergarten children can also benefit from this type of enhancement. Children in four Wisconsin classrooms were provided with music training and after just four months, these children were scoring 36 percent higher than their peers who did not receive the training in spatial reasoning. What this shows is that public schools are fertile ground for this kind of enhancement, and it opens up a treasure chest of opportunities for educators. Finally, Mr. Chairman, this fall, I am beginning a five year program at four Head Start sites. Researchers have found that the failure to develop abstract reasoning represents one of the most glaring deficits of the low income child. I believe, based on our previous findings, that enrichment programs featuring music instruction can provide these children with the opportunity to develop these skills and allow them to compete on a more equal basis with their middle income peers both in the United States and abroad. Mr. Chairman, we respectfully request that members of the subcommittee consider this research as you determine the scope and the character for funding and Federal support for science and for education. We urge you in your deliberations to include specific language that directs the Department of Education to fund continuing research in this important area of up to $2 million, so that we can ensure optimal intellectual development for all our children, particularly the economically disadvantaged, who are so dependent upon our public education programs. Congressional support is essential for this research to have the necessary impact on education, so that school boards across the country are prompted to reevaluate unfortunate decisions to eliminate school music programs that hold so much promise for children's intellectual development. That concludes my testimony, and I thank you for this important opportunity. I would like to ask if you have any questions. [The prepared statement of Frances Rauscher follows:] [Pages 1266 - 1273--The official Committee record contains additional material here.] Mr. Istook. Dr. Rauscher, I am tempted to get into Name that Tune. Understand, I grew up in a family that placed a very large emphasis on music. We were constantly singing and so forth. I thought we did it just for fun. I did not know it was part of developing us. I do have a sister who is an elementary school music teacher. I was in her classroom just before Easter, and we sang Peter Cottontail and did the Bunny Hop. I do not know if your research has covered the Bunny Hop, as far as positive benefits. But it was fun. We certainly appreciate it. Thank you, Dr. Rauscher. Ms. Rauscher. Thank you very much. ---------- Wednesday, April 23, 1997. WITNESS SUZANNE GEDANCE, ALLIANCE FOR EYE AND VISION RESEARCH Mr. Istook. Next is Suzanne Gedance. Thank you, and please proceed. Ms. Gedance. Thank you, Mr. Chairman and members of the committee. My name is Suzanne Gedance, I am Senior Vice President of Prevent Blindness America. I am here today to represent the Alliance for Eye and Vision Research, or AEVR, which is a coalition of organizations devoted to vision and the role that research plays in it. As I begin, I would like to thank this committee for the leadership that you have shown in the past several years in stabilizing the funding base for the National Institutes of Health. That is very important, and all of us in eye and vision research thank you very much. We have been talking about the members of your family, and the members of everyone's family depend on their eyesight and good vision. Unfortunately, 12 million Americans today suffer from some form of irreversible blindness, and as the population is changing, this number is going to grow significantly. That makes my job here today so awesome, because I represent such a large constituency. Today our Nation spends $38.4 billion every year on the direct and indirect costs associated with vision loss. That is what makes vision research such a good investment. Because if we can find ways to prevent and to treat and cure these diseases, this will free up the funds for other important uses. Our experts tell us now that the time is right, we are so close to making discoveries that we need to in order to successfully prevent the eye problems that I have been talking about. Here are the issues that I like to address. First, the funding for NEI has not kept pace with the other National Institutes of Health. It is 11 percent versus a 40 percent increase. The way in which the funding has been calculated leads to a continuing disadvantage to the funding of eye research, just at a time when, as I mentioned, we are going to have more and more people who have the age-related eye problems. Secondly, NEI has a fabulous track record for scientific discovery. One of the things that you are certainly familiar with is a medical miracle is organ transplant. That happened because of the work that was done in corneal research. In addition, so much is happening now with isolating genes and eyes are a wonderful place, they are a wonderful test tube to look at the rest of the tissues of the body. Thirdly, NEI is one of the best investments that you can make. It is one of the most cost effective and efficiently managed institutes at NIH. The average cost of grants is significantly less. The people at NEI work very hard. Their workload is about twice what it is for the other National Institutes of Health. Their overhead is about half of what it costs in some of the other organizations. So we think NEI is a tremendous success story. We believe that it could be more successful if we have the funding that it needs to accomplish these things. The disease I would like to talk to you about today specifically is one that has all of us at Prevent Blindness American very concerned. It is called age-related macular degeneration. What it does is rob you of the vision in the center of your vision, it means that you cannot read, you cannot focus on fine things. This is associated with age. It is going to be a terrible problem to all of us in the years to come. It is the leading cause of blindness in people over 65. One in three people age 75 and over has it. We expect it will affect 6.3 million people by the year 2030. To bring this into focus, think of the difficulties of trying to operate by feel and touch when you have not been trained to do that. The discussion of the lady who made her sandwich out of cat food instead of tuna fish because she could not tell the difference, the humiliation of reaching into a bowl of cocktail sauce because you think it is cocktail nuts. You have to give up going out in public if you cannot have help sorting out what colors your clothing are. It really robs you of the quality of life and causes you to become dependent. NEI has already engaged in research focused on AMD, and all of us ask that they are able to expand this in time to help meet the needs that are confronting us. We ask that you double the NIH budget over the next five years, as proposed in House Resolution 83. It would require a 15 percent increase in funding by fiscal year 1998. AEVR at minimum requests that you supporting funding for NEI in the amount of $362.7 million, as requested by the NEI Advisory Council, which would be a 9 percent increase above the level requested by the President in his budget. Thank you on behalf of all of us with eyes, and we appreciate your leadership. [The prepared statement of Suzanne Gedance follows:] [Pages 1276 - 1284--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Ms. Gedance. ---------- Wednesday, April 23, 1997. WITNESS JOHN DURANT, M.D., FRIENDS OF CANCER RESEARCH Mr. Istook. Dr. John Durant, Friends of Cancer Research. Dr. Durant, welcome. Dr. Durant. Thank you very much for inviting us. I represent the Friends of Cancer Research, which is a group of people who are interested in increasing public awareness about the value and importance of cancer research. I am also the Executive for the American Society of Clinical Oncology, among whose members are 9,000 American physicians practicing oncology in the United States. I have listed in my written testimony some specific ideas which when they come to fruition will no doubt benefit a host of future cancer patients. In order to put that in context, though, I would like to go back into my own career. In 1963, when I was searching for a fellowship, of which there were not many in those days, I identified Memorial Sloan Kettering. The man who was to be my mentor, however, died of Hodgkin's disease during the spring of the year I began my fellowship. I was next involved as a public witness before Congressional committees in 1970 or so, advocating making cancer a national priority. I never dreamed at the time how personal my interest would become. By 1980, both my sister and my wife had developed cancer. My sister had a disease, chronic myelogenous leukemia, and she died several years ago after a 15 year struggle. Now, my cousin has the same disease. However, in 1997, her chances of cure are 75 percent or so, because she is fortunate to have a perfect match in her brother, and will receive a transplant. My wife had breast cancer. Had we known then what we know today, she probably would have lived a lot longer, maybe even be cured. Our daughter would still have her mother. Now, this year at our annual meeting in Denver, to be held next month, we will honor Dr. Don Thomas, a Nobel laureate, for his contributions to the transplant technology that gives my cousin such a good chance of cure. We will also hear at the same meeting from Dr. Vokel Viel of Germany who will explain how his group obtained a 90 plus cure rate for advanced Hodgkin's disease, the disease that killed my mentor, and an outcome which we surely would not have anticipated or dreamed of in 1963. All of this puts in perspective what can happen if we go fast enough. What does going fast enough mean to us? It means that the ideas, one of which you heard from an earlier witness, need adequate funding. Adequate funding, we believe, is a minimum of the professional judgment budget, which has come down for the NIH. We would like to advocate for the proportional distribution of that increase to all of the institutes at the NIH, including specifically the National Cancer Institute. I am confident that the proper funding and execution of research, particularly clinical research, in which we are interested as a professional society, will bear the kind of fruit the American public is expecting. I thank you for the opportunity to speak with you. [The prepared statement of John Durant, M.D., follows:] [Pages 1287 - 1293--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Dr. Durant. I appreciate your comments and I think my staff would like to be in touch with you on some things on this. I appreciate it. ---------- Wednesday, April 23, 1997. WITNESS LISA KAESER, FRIENDS OF NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT INSTITUTE Mr. Istook. The next witness is Lisa Kaeser from the Friends of NICHD Coalition, and the Alan Guttmacher Institute. Please, go ahead. Ms. Kaeser. Good morning. Thank you, Mr. Chairman. I am testifying today on behalf of the Friends of NICHD, a coalition of approximately 100 organizations that support the work of the National Institutes of Health, with a special focus on the National Institute of Child Health and Human Development. I would like to request, as the others have, that our full statement be included in the record. First and foremost, we would like to thank the subcommittee for its unflagging support for the NIH. While we realize that you are under tremendous pressure to divert precious funds elsewhere, we wholeheartedly agree that the physical and mental health and well-being of our Nation's people should remain a top Federal priority. NICHD's mission, to ensure the birth of healthy babies and the opportunity for each infant to reach adulthood and achieve full potential, unimpaired by physical or mental disabilities, clearly deserves the greatest possible support. To that end, the Friends of NICHD supports NICHD's professional judgment budget and respectfully recommends that NICHD receive $690 million, a 9.3 percent increase in funding for fiscal year 1998. NICHD's work, unusual in NIH for not focusing entirely a single disease or physiologic system, encompasses the whole span of human development. This progression can best be illustrated by the following examples from the Institute's research portfolio. One key component of the Institute's work is to increase public health through broad dissemination of its findings. A perfect example of NICHD's effective educational efforts is the now well-known Back to Sleep campaign. The campaign is a direct result of NICHD research that showed a clear link between infant sleep position and SIDS, sudden infant death syndrome, which is itself the sudden, unexplained death of an infant. By advising parents, care givers and health professionals to place babies on their backs to sleep instead of their stomachs, the campaign has accomplished a significant change in practice in only four years, resulting in a 30 percent reduction in SIDS. Another exciting advance is the development of a vaccine against hemophilus influenza type b, or Hib, until recently the leading cause of acquired mental retardation in the United States. Even with effective antibiotic treatment, 5 percent of those who contracted Hib died, and about 30 percent suffered permanent damage. The development of the vaccine, however, has led to a 95 percent reduction in Hib infection in the U.S. Last fall, the 1996 Lasker award, which is often referred to as the American Nobel, was awarded to NICHD scientists for its development. Over the last ten years, NICHD-led research has also concentrated on reading disabilities, the most common type of learning disability. Over the long term, reading disabilities, if undetected, can have severe ramifications for any child's future in the working world. Exciting new research has shown that simple tests can help to detect learning disabilities at an early enough stage for effective intervention. NICHD is also a primary funder of demographic, social and behavioral research on the structure of the American family. A new executive order just signed by President Clinton on Monday gives NICHD a leadership role in the Federal inter-agency forum on child and family statistics, which is directed to issue annual reports summarizing the well-being of the Nation's children and youth, data that will undoubtedly prove to be useful as we monitor the impact of welfare reform. Another study of urgent interest to the many working families in the U.S. is NICHD's long-term study on day care and its impact on children's development. The study underscores conclusions reached by other researchers that one of the most important positive influences over a child's early development is a rich and stimulating environment, and that that environment can be provided within either a day care setting and of course at home. I would like to end on a personal note that brought home for me just how important NICHD research is. Like all new parents, I have been appropriately exhorted to immunize our children. Although issued the usual warnings about possible side effects of vaccines, no one thinks it will happen to them. Then just two years ago, my infant son had one of the relatively rare reactions to the standard pertussis, or whooping cough vaccine. He went into shock, stopped breathing and had to be revived with CPR. The same vaccine research team I mentioned earlier has developed a new vaccine against pertussis that would have few, if any, of these side effects. Even though it is unlikely that my new baby daughter would have had the same reaction to the old vaccine, it is wonderful to know that parents no longer have to worry about whether they are doing the right thing in getting their child vaccinated. We cannot put a price tag on our peace of mind. In closing, I would just like to thank the subcommittee again for its support of NIH. [The prepared statement of Lisa Kaeser follows:] [Pages 1296 - 1304--The official Committee record contains additional material here.] Mr. Istook. Thank you very much. I appreciate your sharing the circumstances with your young daughter. Thank you. Ms. Kaeser. Thank you. ---------- Wednesday, April 23, 1997. WITNESSES SANDRA H. WELCH BERYL JACKSON, PUBLIC BROADCASTING SERVICES--PBS MATHLINE Mr. Istook. With our next witness, I am going to turn the Chair over to Congresswoman Anne Northup. The next witness is Sandra Welch of Public Broadcasting Services. Mrs. Northup [assuming chair]. Good morning, Ms. Welch. We are ready for your testimony. Ms. Welch. Great, thank you. I am Sandra Welch, Executive Vice President of Learning Services at PBS. For 30 years, I have been working directly with classroom teachers, helping them improve their teaching strategies in the classroom, in order to do the best job they can for their students. Starting 30 years ago, in Kentucky, as an elementary school librarian and then working for 20 years at Kentucky Educational Television, I have had a lot of experience in how you help teachers, particularly using new technology and telecommunication in the classroom. With me is Beryl Jackson. Beryl is a math teacher and supervisor with the D.C. Public Schools, currently on loan to PBS to work on this math demonstration project. Beryl and her colleague, Carey Bolster, sitting right back of us, are the only two full time professional staff members for this national project. We want to thank this committee for its past support of this project, and we want to point out today that it is an effective new model for how to train teachers across the country to be better math teachers. At the same time, we are training them how to use the new technologies and the new on- line computer systems to improve learning. We are using the power of television with these videos that we are producing, and we are using the power of computers and on-line networks to reach teachers across the country with this new model. Beryl will now explain how it works and the impact we are having on math teachers. Ms. Jackson. Good morning. As a mathematics educator, I know first-hand what it is like to be a classroom teacher. I believe that there are few professions as rewarding as teaching, and I also believe that there are few professions as demanding as teaching. As a teacher, it was essential that I was in my classroom every day. But at the same time, I needed to keep abreast of the content and pedagogy that would make me a better teacher. Therefore, my professional learning cycle began at the end of the day on Saturdays, some Sundays and always in the summer. Once they were over, I was once again left in my classroom alone to mirror these instructional practices. There was no support and there was no network. I really did not know what a good lesson was, because I never had the opportunity to observe outstanding teachers teach. What I have just described is essentially the traditional model for professional development. These sentiments could be echoed from across this country. However, with your support, PBS Mathline now provides teachers with an alternative approach to this professional development. These Mathline videos provide teachers with numerous opportunities to visit and revisit classrooms across this country where teachers and students are engaged in rigorous and exciting teaching and learning experiences. These standards based lessons spark discussions by teachers in their facilitated on-line learning communities. In these communities, teachers are provided ongoing support as they strive for excellence in mathematics education. Mathline, I think, can best be described as teachers helping teachers teach. Having already reached over 4,000 teachers in 39 States, and having impacted over 780,000 students, Mathline is unparalleled professional development which takes advantage of telecommunications technology. It is uniquely different, in that it is the only professional development program of its kind which allows teachers to communicate any time, any place, in year-long learning communities using telecommunications based technology. As we move into the next century, it is imperative that we prepare teachers to be able to use technology as a tool for their learning, so they can equip their students to do so as well. I think in the words of one of our teachers, Mathline is the best professional development experience they have ever had. Ms. Welch. We are respectfully requesting $2.25 million in fiscal year 1998 to continue this project. Those funds will be used to do more extensive training, helping teachers understand how to use computers, how to get on-line. We will be using those funds to produce additional videos that provide the content and the understanding on how to teach with the new math standards. We will be using those funds to assure that we are in all 50 States in the future. Finally, I would like to say that we would be happy to come back to this committee in the future if you would like a hands- on demonstration. We would be happy to put these computers in your hands, let you get on-line with teachers back in your home districts who are enrolled in this program so you could hear directly from them. In the meantime, we would also be glad to visit any of your offices and give you a personal one-on-one demonstration as well. If you have any questions, we would be glad to answer them. Thank you. [The prepared statement of Sandra Welch and Beryl Jackson follows:] [Pages 1307 - 1315--The official Committee record contains additional material here.] Mrs. Northup. Thank you for your presentation. I think we are out of time, but I appreciate it. As a former math teacher, it is particularly interesting to me. Ms. Welch. Wonderful. Thank you. ---------- Wednesday, April 23, 1997. WITNESS JOSEPH W. KENMITZ, WISCONSIN REGIONAL PRIMATE RESEARCH CENTER Mrs. Northup. Dr. Joseph Kenmitz, Senior Scientist and Interim Director of the Wisconsin Regional Primate Research Center. Welcome, and I know you are testifying on the Research Center. Mr. Kenmitz. Good morning, and thank you for this opportunity. In fact, I am testifying on behalf of all seven of the regional primate research enters, which are part of the National Center for Research Resources. The seven regional primate research centers are located at distinguished universities in the States of California, Georgia, Louisiana, Massachusetts, Oregon, Washington and Wisconsin. They receive their support as part of the comparative medicine program of NCRR. I am proud to have served at the Wisconsin Regional Primate Research Center for 20 years. I welcome the opportunity to provide this testimony to this committee this morning. Congress acted with great wisdom and foresight in 1960 to establish the National Primate Center program by appropriating funds to build the seven centers we have today. In the nearly 40 years since their establishment, it is increasingly clear that this was an excellent investment. These centers provide specialized and unique scientific capabilities not available through any other program within the Department of Health and Human Services. For a variety of reasons, including the ever-increasing complexity and sophistication of research questions and methodologies, the primate center program is even more important today than when the centers were established. Well over 1,000 investigators depend on the primate centers to conduct research supported by the National Institutes of Health, as well as other governmental and private sector sources. These investigators are not only those based at primate centers, but also include regional, national and international scientists who rely on the resources and expertise resident at primate centers to conduct their research. The importance of non-human primates to progress in biomedical research cannot be overestimated. These animals are the closest surrogates for our own species, sharing more than 90 percent of the genetic makeup with humans. This close genetic similarity results in marked similarities in anatomy, physiology and behavior, that make these animals outstanding models, in some cases the only appropriate choice for understanding human health and disease processes. Non-human primates are often the vital link between basic research and human application. Examples of significant accomplishments resulting from primate research abound in the fields of neuroscience, reproduction and developmental biology, infectious diseases, among others. Recent advances at the regional primate research centers include increased understanding of the pathobiology of AIDS and the development of vaccines for protection against this disease. Indeed, the most prevalent model of AIDS, simian immunodeficiency virus, was established a primate centers. Our center and others are now also engaged in research to prevent the AIDS virus from being transmitted from HIV infected mothers to their babies. Other advances include better understanding the fertilization and early prenatal development. Another example of a research area where the non-human primate offers unique benefits because of similarities to humans and differences from other laboratory species. Non-human primate research is also leading to enhanced knowledge of the genetic basis of disease and immunity, of the development of obesity and its complications, such as diabetes and hypertension, and of specific women's health issues, such as endometriosis, polycystic ovary syndrome, and of changes during and after menopause. Older people represent the fastest growing segment of our population. People are living longer and there is a need to improve the quality of life of older individuals. Efforts are underway at our primate center and elsewhere to uncover the basic processes of aging in primates and to develop new approaches to postpone the development of age related infirmities, such as cancer, osteoporosis, loss of muscle mass, impaired vision, as you have heard about earlier, and other neurological problems. We have promising preliminary evidence to suggest that diet can reduce the incidence, delay the onset and lessen the severity of some metabolic diseases associated with aging. New hypothesis regarding the mechanism of these beneficial effects of reduced caloric intake are now being tested. In spite of their productivity, the infrastructure at the regional primate research centers has had to cope with basically static base operating budgets. At one time, the support for the primate centers covered operating costs and research projects conducted at the centers. Today, these base grants cover only a portion of the operating expenses, and little or none of the research costs. The research projects themselves are now primarily funded through a rigorous system of peer review at NIH. The sum of these competitively awarded grants exceeds the size of the base grants by more than five fold at some centers, and requires resources exceeding those available in terms of animals, laboratories and support functions. We need additional operating funds in order to meet expeditiously the operational needs of the biomedical research community. The use of primates in research---- Mrs. Northup. Doctor, can you summarize the rest of your remarks? We are almost a minute over, and there are other witnesses. Mr. Kenmitz. I am sorry, yes. I also wanted to specifically mention that the primate centers are now nearly 40 years old, and some renovation and replacement of facilities is becoming an urgent issue. The Congress reinstated construction authority in 1993 for the first time since 1969, and we are grateful for this support during the last few years. There is an indication in the President's budget that the next year's construction funding to the National Center for Research Resources is to be reduced by 80 percent, and we ask that Congress restore funding to at least last year's level. Thank you very much. [The prepared statement of Joseph Kenmitz follows:] [Pages 1319 - 1326--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. ---------- Wednesday, April 23, 1997. WITNESS ANTHONY COLE, HAYMARKET HOUSE Mrs. Northup. Next, we have Anthony Cole. He is the Vice President of Haymarket House, and he is here representing Haymarket House. Mr. Cole. Good morning. Thank you, Madam Chair, for providing Haymarket House with the opportunity to present testimony to your committee again this year. My name is Anthony Cole, and I am Vice President of Haymarket House. We are a comprehensive substance abuse treatment center on the near west side of Chicago. We were founded in 1975 by Monsignor Ignatius McDermott. We have developed several unique programs to address the needs of high- risk females and the non-violent drug offender. Haymarket currently offers comprehensive and integrated treatment services to an average of 13,000 clients annually. We are the largest drug abuse treatment center in the City of Chicago and the third largest in the State of Illinois. I present this testimony this year to provide a status report on Haymarket's ongoing efforts to be innovative and effective in our programming. We at the Haymarket House believe that the drug abuse prevention and treatment community can and should do a better job of servicing their clients using limited available Federal resources. In order to do a better job, however, Federal policy related to prevention and treatment must become coherent and better coordinated. The treatment community needs to be encouraged to develop and define what is called a continuum of care. This continuum is the integration of drug abuse prevention, drug abuse treatment, health services, child care, parent training, vocational education and job placement. This integration of services enables treatment centers to improve their prevention and treatment services and consequently, to increase the rate of savings to taxpayers. This continuum of care allows the treatment community to help more addicts become more productive members of society more quickly. One of the greatest barriers that high-risk women currently face, when seeking substance abuse treatment, is a lack of child care. Few treatment facilities approach women as mothers as well as individuals, or deal with matters related to the well-being of their children. Haymarket House is pleased that earlier this month, CSAT issued a GFA to their RWCs, as well as their PPWs grantees requesting applications for supplements to support the enhancement and/or expansion of child care and children's related services. Haymarket House believes that there is a direct correlation between the comprehensive nature of treatment and reduction in recidivism rates. Accordingly, we have incorporated a preventive health services clinic into our treatment programs. Our clients are faced with a variety of medical and health related problems which impede their treatment progress. Through the establishment of an on-site clinic in partnership with a federally qualified health center in Chicago, we have been able to develop our ability to help more addicts become healthy and productive members of society. We urge the committee to encourage the CDC and HRSA to continue to work with community based organizations that can aid them in controlling the spread of infectious diseases, the reduction of chronic illnesses and the reduction of risk factors through the prevention and primary health care. Haymarket House is also looking to expand the vocational education and job placement services we offer our clients. Once they have completed treatment and have begun to address other medical and health related problems, the one impediment that they face is a lack of employment opportunities. Haymarket is looking to collaborate with the Job Corps Center which is scheduled to open in Chicago next year in developing an outpatient demonstration project. We ask that the committee encourage the Department of Labor to consider working with community based organizations in this innovative way. As the treatment community works to adapt to meet the challenges of the reality of reduced Federal resources, we ask that Congress require executive branch agencies to better coordinate their programs and to allow local treatment centers such as Haymarket House to be more innovative in their use of Federal dollars. We are pleased to announce that several national organizations, such as NASADAD and Legal Action Center are working together to ensure the integration and coordination of treatment, prevention, education and research activities. Haymarket House trusts that this committee will seriously consider any draft report language these groups put forward. We are also aware that some States are experiencing difficulty in obligating treatment funding due to the setasides that are found in the SAMHSA authorization. Haymarket looks forward to working with the authorizers and the appropriations committees to address this concern. In closing, Haymarket requests that you help the treatment community create a continuum of care for individuals with drug abuse problems so that those individuals can address their problems more quickly and completely. Those problems include drug abuse and its biological, psychological and social problems, family disintegration, lack of education and lack of employment opportunity. The continuum of care requires the involvement of a variety of Federal agencies, most importantly the three Departments under this subcommittee's jurisdiction. Haymarket House appreciates the opportunity to present this testimony this year. Thank you. [The prepared statement of Anthony Cole follows:] [Pages 1329 - 1336--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. ---------- Wednesday, April 23, 1997. WITNESSES JOSEPH McNULTY HARRY ANDERSON, HELEN KELLER NATIONAL CENTER FOR DEAF-BLIND Mrs. Northup. Next we have Mr. Joseph McNulty, who is the Executive Director of the Helen Keller National Center. Welcome, Mr. McNulty. Mr. McNulty. Good morning. I am Joe McNulty, the Director of the Helen Keller National Center. I have submitted some written testimony. To speak on behalf of the center today is Mr. Harry Anderson. Mr. Anderson. Good morning. My name is Harry Anderson, and I am a deaf-blind consumer and a professional. My job is a guidance counselor at the Florida School for the Deaf and the Blind. I would like to speak on behalf of the Helen Keller National Center. How the Center and its national technical assistance consortia have provided a lot of assistance to the deaf-blind consumers, their families, the professionals, the services agencies in the State of Florida. Florida is just one State as an example how Helen Keller National Center has provided guidance, training, information, technology for deaf-blind people in respective States. The important thing is that employment opportunities and improved living situations as a result of technology has enabled people like myself who can use the high technology of an FM transmitter, which Mr. McNulty will show you. This is an FM system which enables many hard of hearing blind people to communicate, to hold jobs. I would like to give an example of how an inter-agency cooperation is happening in Florida. With the help of the southeastern region representative by the name of Susan Brooks, we were able to pull together all the different service agencies in the State of Florida. Also, we invited the area director of the NTAC to come to Florida about a month ago to help the inter-agencies such as the Division of Blind Services, Vocational Rehabilitation, Development of Services, Counsel on the Aging and Center for Independent Living, to name a few, to get together and determine how to provide services to deaf- blind consumers and their families in the State of Florida. Also, the importance of the fact that Helen Keller National Center has asked for $8.5 million, and the committee is willing to give $7.5 million. We need the extra million to do a lot of research in the area of technology, training, and to continue providing services. Also, we have to remember that we all are living longer, and that we are having an increased number of deaf-blind senior citizens, who will be needing assisted living and support. In Florida, we have the largest number of deaf-blind senior citizens. I have been receiving quite a few requests from deaf- blind people outside of Florida who are searching for a place to live where they can receive assisted living. There is one important thing I do know: that Congress is encouraging the shifting of the responsibility from the Federal Government to the State governments. This is why I strongly encourage and strongly ask you to please continue to fund the Helen Keller National Center. The Helen Keller National Center is the base, the foundation upon which services to deaf-blind consumers in every State in the union can provide services to deaf-blind. Mr. Chairman, members of the subcommittee, I thank you for the opportunity to speak before you this morning. [The prepared statement of Harry Anderson follows:] [Pages 1339 - 1345--The official Committee record contains additional material here.] Mrs. Northup. Thank you very much. I am sorry that the hearing only has five minutes left in it. We are going to have to adjourn until 2:15 this afternoon. However, I am going to exercise the prerogative of the Chair in the few final minutes to skip to John Aquilino. He has a young child here, and I feel that it would be best if we could go on and give him and the young child an opportunity to testify, so that they do not have to be held over. ---------- Wednesday, April 23, 1997. WITNESSES JOHN D. AQUILINO, JR. AND JOHN Z. AQUILINO Mr. Aquilino. I thank the Chair for your patience. We are here basically to dispel a major myth. The myth is that heart disease strikes people my age. My son, John, is like 32,000 other newborns who are born in this country every year with a major heart defect. Twenty-seven hundred of these babies die before their first birthday. He is seven years old, he plays tee ball for St. Jerome's School in Hyattsville. He is the oldest patient at Washington Children's Hospital with this condition, hypoplastic left heart syndrome. His left ventricle was not developed prior to birth. At two days old, he spent six hours in Children's Hospital emergency room. Before he was able to be stabilized and diagnosed, his heart and lungs shut down twice. He has had four major surgeries, three major open heart surgeries before he was four years old, and a half dozen cardiac catheterizations. I am here basically to ask, using American Heart Association figures, that the National Institute for Heart, Lung and Blood be funded at $1.65 billion, including $834 million for the heart program. They use terms like constant dollars and absolutely dollars. I do not know what they mean, and I really do not care. What I care about is love for my son, and the biomedical research using animals that gave me my son. I would love to see the day when, using his own DNA, he can have a full functioning heart of his own. Thanks for that research. The hardest question anyone could ask a new parent was one asked me and my wife the second day after Johnny was born, and that is, do we want him to live. It was not hard to answer that question. Yes, I want my son to live. And I want children and fathers and mothers from Hyattsville, Maryland to Harari, Zimbabwe and all points in between to live. The work you do here will enable other parents the precious and priceless chance to hear an infant's first cry, and a seven year old's shouted greeting, Dad's home. From the bottom of my heart and the love I have for my son, I want to thank you for allowing women and men of science to be able to do research that gives the gift of life to children like John, and make this kind of research America's number one priority. Thank you. [The prepared statement of John Aquilino follows:] [Pages 1347 - 1352--The official Committee record contains additional material here.] Mrs. Northup. Thank you. And welcome, Johnny. Is this your first time to Washington? Mr. Aquilino. First time to see his dad cry. Mrs. Northup. First time. Well, it is a special day for you and it is a special day for us, too. I hope you have a nice visit here. Thank you very much. At this point, I am going to have to recess the committee. We are going to recess at this time. We are unsure when it will restart. Thank you very much. [Recess.] ---------- Wednesday, April 23, 1997. WITNESS HON. JOHN McCAIN, A UNITED STATES SENATOR FROM THE STATE OF ARIZONA, NATIONAL PARKINSON'S FOUNDATION Mr. Young [assuming chair]. We will come to order. I would like to make an announcement on behalf of the Chairman, who unfortunately is not able to be here because of his problem with his back this afternoon. As we begin the afternoon hearings, I wanted to remind the witnesses of two new provisions in the rules of the House. In addition to the written statement, non-governmental witnesses must submit a curriculum vitae and a statement of Federal grant or contract funds they or the entity they represent have received. If there are any questions concerning the applicability of this provision, or questions as to how to comply, please contact the subcommittee staff. Also, there is a very long list of witnesses for the afternoon. The schedule is very tight, and I would ask, not referring to you, Senator, but after you, that we will abide by the five minute rule as closely as we possibly can. I would remind all the witnesses that their entire statements will be placed in the record and that we would ask for a summary. Now I am very proud to introduce a former colleague in the House and now a member of the United States, and if I could divert just a second, John, Senator McCain is well known. Many years ago, when he returned home from Vietnam, after many years of imprisonment, I had the great honor of being on the welcoming committee that met you when you first stepped foot on American soil. It was a very proud moment for me, and I think a very exciting moment for you. You did well throughout your tremendous career in the military, and you have done well throughout your tremendous career in the United States Congress and Senate. You I recognize. Senator McCain. Thank you very much, Mr. Chairman. I should mention that was nearly 25 years ago. We are getting a little long in the tooth, but I still remember it with great emotion. I would also like to thank you for your consistent support of the POWs, all during the time that I was away. We are very grateful for it, you and so many others. Mr. Chairman, I will be brief, because I do realize that you have a long list of witnesses, and some far more important than me. I would like to thank you and the committee for allowing me to make a few brief remarks about a very cruel disease, Parkinson's. I preface my remarks, Mr. Chairman, noting that I was the most mediocre of high school and collegiate boxers that has probably ever graced the Naval Academy and the collegiate boxing sport. So that also has increased my admiration for the outstanding American and magnificent man that we all know about. I have watched with admiration the courageous efforts of Mohammad Ali, since he stepped forward to become a valiant crusader on behalf of the Parkinson's community. Many were surprised by Mohammad's willingness to take his fight with Parkinson's public. I was not. I was not surprised that Mohammad Ali has again stepped into the public arena with his usual determination to win another fight. This time, he is fighting to find a cure for Parkinson's disease for himself and for the 1 million Americans afflicted with this disease. Mr. Chairman, you know the ravages of the disease. You know how terrible it is. The people here are testimony to that. I would also like to just mention that this bill is named in honor of our dear friend and colleague, Mo Udall, a man who reached out to me in friendship and love. And I watched him, as we all did, wage this battle, this losing battle that he fought with courage and determination, just as this great and magnificent American next to me did. I love Mo Udall, as we all do, those that knew him on both sides of the aisle, and we watched with sorrow as he became more and more incapacitated by it. There is a cure for the disease. We need to find it. We need to give it the sufficient funding. I believe that we can and will. We were able to get this bill through the Senate last time, as you know, Mr. Chairman. I believe that this time, we cannot fail, not only those who are afflicted with it, but future generations who will be, unless we find a cure for this debilitating disease. Mr. Chairman, I want to thank you and the other members of the committee for your kind attention. I want to thank you for your commitment that we all share to doing what we have to do, and that is fulfill the proper role of Government to try to rid our society and the world of this terrible scourge. Thank you, Mr. Chairman. [The prepared statement of John McCain follows:] [Pages 1355 - 1364--The official Committee record contains additional material here.] Mr. Young. Senator, thank you very much for being here today, and I would say to you that my wife is in the audience, and in her family we have several incidences of Parkinson's. We have a very strong personal interest in this issue, as well as recognizing the need to deal with this, along with many other terrible, terrible diseases that afflict the human population. Senator McCain. Thank you. Mr. Young. Were you going to introduce the Champ? Senator McCain. Could I ask Anne to do that, please? Mr. Young. All right, I understand that Ms. Northup will do that. Mrs. Northup is at the end of the table, and we call on her now. ---------- Wednesday, April 23, 1997. WITNESSES LONNIE ALI, AND MUHAMMAD ALI, NATIONAL PARKINSON'S FOUNDATION Mrs. Northup. Mr. Chairman, it gives me a great deal of pleasure to introduce one of our favorite sons of Louisville, Kentucky. He is known to float like a butterfly and sting like a bee, he is the most popular man to have ever stepped into the boxing ring. Of course, he needs no introduction, he is Muhammad Ali. He was born Cassius Clay, the story is that somebody stole his bicycle downtown. He reported it to a policeman who happened to run the local boxing recreation center. He invited Cassius Clay to become part of that, and the rest is history. He won the Golden Gloves in Kentucky six times. He went on to become the Olympic champion in 1960. In 1964, he became the heavyweight boxing champion of the world when he defeated Sonny Liston. Soon after that, he became part of the Nation of Islam. He turned down his induction into the armed forces and he was stripped of his title when he lost a court battle and was convicted of violating the Secret Service Act. That was overturned. He came back in 1970, known as Muhammad Ali, serving as an example to so many people, regained his heavyweight championship by knocking out George Foreman in 1974. He is beloved in our community and across this country. He has served as the example to so many children and so many athletes. My own sister is a member of three Olympic teams. I know the affection and the respect that so many Olympians have for Muhammad Ali. There is a reason, Mr. Chairman, that he was invited to light the torch at the Olympics this year. It is because to all Olympians, he has served as such a wonderful example. I ask you to join me in welcoming him before our committee today. Mr. Young. Well, Champ, we do welcome you to the committee. We are very, very pleased and proud to have you here. We would be happy to hear anything that you have to say. Mrs. Ali. Mr. Chairman and members of this committee, my name is Lonnie Ali. I am accompanied by my husband, Muhammad Ali, who I am sure needs no introduction. The fact that I am the one speaking to you this morning and not Muhammad is one of the principal reasons that we are here today. I am sure all of you know that Muhammad suffers from Parkinson's disease, a progressive neurodegenerative disorder that has robbed him of one of his most prized functions, his voice and the ability to clearly speak with resonance. I believe all of you remember Muhammad's pre-Parkinson's days, when he moved millions with his vibrant voice and his poetic expression. In fact, Muhammad was so vocal that he was dubbed, the Louisville Lip. Shortly after joining the professional ranks of boxing, my experience as a Parkinson's caregiver has given me greater understanding about this disease and how it can devastate not only its victims, but also family and friends as well. Thanks to Muhammad and the National Parkinson's Foundation, I have had the opportunity to share my story as a caregiver with hundreds of other Parkinson's support groups. More importantly, they have had the opportunity to share with me their own personal stories of economic and emotional tragedy and hardship this terrible disease has brought them. In the course of our travels, I have met hundreds of Parkinson's patients, some worse off than Muhammad, and some not as affected. Muhammad and I have come away from these experiences with the resolve to help in any way we can to advance the research that will hasten the cure of Parkinson's disease. Muhammad and I are committed to participate in that focus on raising funds for medical research and tonight, Muhammad is being honored at such an event in Washington that is being sponsored by the Capital Chapter of the National Parkinson's Foundation, chaired by your colleague, Joe McDade, who also suffers from Parkinson's disease. Our special guest will be Senator John McCain, and I would like to extend a personal invitation to each of you to join us tonight. As you will hear from Mr. Emilio Alonso-Mendoza, Executive Director of the National Parkinson's Foundation, the money raised goes to support some of the finest Parkinson's research in the world. I can tell you first-hand, more is needed. The resources of the National Institutes of Health cannot be matched by private philanthropy. NIH, whose appropriations your committee approves, is supporting a large amount of the Parkinson's research, but not enough, considering the research opportunities currently at hand. I have been advised by some of the top Parkinson's researchers that a significant infusion of Federal funds allocated to Parkinson's research will surely hasten the cure that Muhammad and thousands of others could personally benefit from. Please consider that fact when you mark up this year's appropriations bill. Even more importantly, I want to urge that you focus on the Morris K. Udall Parkinson's Research Bill, which authorizes $100 million for Parkinson's disease research in the next fiscal year. Muhammad and I are asking each of you to become a co-sponsor of this legislation, which was just reintroduced only two weeks ago. When it is enacted into law, which it will be, appropriate the funds that it calls for, so that we can rid ourselves of this devastating illness. Before I finish my remarks, I would like all of you to know that Muhammad was unwilling to speak out and help in this fight to conquer Parkinson's disease until recently, when it became apparent to him that he might be able to make a difference. I think you will all agree that he has. Please consider our request and plea for your help. Thank you, Mr. Chairman, for providing us the opportunity to appear before you today, and thank you, committee members. [The prepared statement of Muhammad and Lonnie Ali follows:] [Pages 1368 - 1370--The official Committee record contains additional material here.] Mr. Young. Thank you very much, both of you, for being here today, and the tremendous work that you do for this cause. ---------- Wednesday, April 23, 1997. WITNESSES LARRY HOFFHEIMER, NATIONAL FOUNDATION FOR BRAIN RESEARCH EMILIO ALONSO-MENDOZA, NATIONAL PARKINSON'S FOUNDATION MORGAN DOWNEY, NATIONAL COALITION FOR RESEARCH IN NEUROLOGICAL DISORDERS DANIEL PEREZ, FHS SOCIETY Mr. Young. I think before we go to the members for questions, we will hear from the rest of the panel. I would like to introduce Larry Hoffheimer, Executive Director of the National Foundation for Brain Research, and ask that you would proceed and introduce the members of your panel that are here. Mr. Hoffheimer. My name is Larry Hoffheimer. Mr. Young. You are from Florida. Mr. Hoffheimer. Sometimes I am in Florida, when it is cold up here. Unfortunately, I have to be both places. I would like to introduce the remainder of the panel here. On my immediate right is Emilio Alonso-Mendoza, the Executive Director of the National Parkinson's Foundation, who will tell us about some of the good work NPS is doing and why your support is needed to increase Parkinson's research. Then to my right even further is Morgan Downy, who is the Executive Director of the National Coalition for Research and Neurological Disorders, which is a coalition of many neurological groups, all seeking increases in neurological research funding. To his right is Mr. Daniel Perez, the head of the FHS Society, who is going to make a special plea for the needs of his organization. Again, on behalf of the entire panel, and particularly the National Parkinson's Foundation and the Alis, we want to thank this committee for the courtesies it has extended to us today. Thank you, Mr. Chairman. Mr. Young. Are there any other members of your group that would like to---- Mr. Hoffheimer. Yes, Mr. Alonso-Mendoza would like to make a statement. Mr. Mendoza. Thank you. Mr. Chairman and members of the distinguished committee, my name is Emilio Alonso-Mendoza, and I am the Executive Director of the National Parkinson's Foundation, which is headquartered in Miami, Florida. It is indeed a pleasure and an honor to appear before you today to share with you my most fondest dream, and that is to find a cure for Parkinson's disease. As you heard from Muhammad through his lovely and articulate wife, Lonnie, we are indeed on the threshold of finding a cure for this terrible disease, which is robbing so many people of their ability to perform their daily functions of life. The National Parkinson's Foundation was founded more than 40 years ago in Miami, Florida, by one of our Nation's truly great philanthropic pioneers. Her name was Mrs. Jean Levy. Her husband was afflicted with Parkinson's. Its mission has remained unchanged throughout the years, and that is to raise medical funds from public philanthropy and fund the best Parkinson's research by the most eminent Parkinson's researchers throughout the world. Until the cause of Parkinson's is found, we are dedicated to improving the quality of life for both Parkinson's patients and their caregivers. Beginning with a single research center in Miami, the National Parkinson's Foundation now supports 50 centers in 11 countries. Thirty-five National Parkinson's Foundation centers of excellence are located in the United States. We spent approximately $5 million this past year on Parkinson's research and plan to spend more this coming year. All of our research is thoroughly peer reviewed by our scientific advisory board, which meets in closed session every year. This board is composed of some of the most distinguished scientists familiar with Parkinson's disease and other neurodegenerative disorders. Let me give you two other examples of ways in which we identified the best research. You may recall last year an NIH research team headed up by Dr. Mikhail Polymoropolous of the NIH Center for Human Genome Research. He announced the discovery of a site of a gene that is believed to have caused Parkinson's disease in a large Italian family that had experienced a high incidence of Parkinson's disease. Because of limited Federal resources, the National Parkinson's Foundation met with Dr. Zach Hall, Director of the National Institute of Neurological Disorders and Stroke, and with Dr. Polymoropolous. We advised him that we wanted to hasten the pursuit of this line of research. The result was that the National Parkinson's Foundation agreed to provide them with $515,000 in grants to enable them to continue their gene research. We also met with Dr. Hall, whose institute allocates most of the Federal funding for Parkinson's disease research, who advised us that there were excellent Parkinson's research applications that would not be funded because of insufficient funds. We asked Dr. Hall to refer these excellent research candidates to the National Parkinson's Foundation, and they are being considered for bridge grants, pending their refunding at future times. This assistance will allow the research investigators to continue their good work. I have said enough about the good work conducted by my organization. But what I do want to focus on, however, is the need for additional Federal resources to help in this fight. My scientific colleagues tell me that with substantial increases in Parkinson's research funding from the NIH, we indeed will find a cure sooner. They also advise me that we are on the threshold of brave new discoveries that are in desperate need of funding now. You, as members of the appropriations committee, have the awesome responsibility of deciding what areas of medical research get more funds and what areas get less. I certainly do not envy you in this challenging task. However, I truly believe that the case for a dramatic increase in Parkinson's disease research funding can and has been made and I would be pleased with you to consider it. Finally, and most importantly, all of you have followed the Morris K. Udall Parkinson's Research Bill, named after your former colleague, who currently suffers severely from this disease. It passed the Senate by unanimous vote last year, and received co-sponsorship by more than one half of the House of Representatives. Of course, we are in another Congress and the process has begun anew. The Udall bill was reintroduced just two weeks ago by Congressmen Upton and Waxman, and by Senators McCain and Wellstone. That bill authorizes $100 million next year for Parkinson's research, up from the currently budgeted $28 million. I and my associates at the National Parkinson's Foundation are and will continue to work to see this bill's enactment. After that, look to this distinguished committee to appropriate the necessary funds that will truly hasten the cure of this terrible disease. I would like to reiterate that it is estimated that there are 1 million people with Parkinson's disease. That is 1 percent of the population over age 65. Currently, the Federal Government spends about $5 billion a year caring for them. That is $5,000 per person. Patients, physicians and caregivers are universally dissatisfied with what that money buys, which is hospitalization, custodial care, and institutionalization. It is estimated that for every Parkinson's disease patient, there are 10 who will develop the disease if they live long enough. What good will it do if we conquer cancer and we banish heart disease and stroke if 10 percent of our population over 65 years develops Parkinson's disease and another 10 percent is consigned to caring for them? If we increase our funding for Parkinson's disease from $28 million to $100 million, that is to say, only $100 per Parkinson's disease patient, I believe that within five years we will abolish the disease. This is great news, because I am in this fight for very personal reasons. My mother was afflicted with Parkinson's. She was misdiagnosed for a very long time. We had all the resources in the world to take care of her, and we could do nothing. I do not want it for myself, but I really want it for my children. I hope that I can look at them in the face one day and say that this group and these people sitting around me joined together in a universal fight and beat this disease that was once called Parkinson's. Thank you very much for allowing me to appear before you today. I respect what you are doing and I wish you Godspeed. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness] [The prepared statement of Emilio Alonso-Mendoza follows:] [Pages 1374 - 1379--The official Committee record contains additional material here.] Mr. Young. Thank you very much, sir, and we appreciate your testimony. Larry, do you want to introduce the next member of your panel? Mr. Hoffheimer. Yes, I would like to introduce Morgan Downey. Morgan Downey is the Executive Director of the National Coalition for Research in Neurological Disorders. Mr. Downey. Thank you, sir. Thank you, Larry. Mr. Chairman and members of the subcommittee, I am pleased to appear before you again representing the National Coalition for Research in Neurological Disorders. I am especially pleased to be here with two of our longstanding members, the National Parkinson's Foundation and the FSH Society. At the outset, let me say, Mr. Chairman, that the 40 plus members of NCR stand in awe of Mr. Porter's leadership and the participation of this subcommittee last year, over the last couple of years, in making sure that NIH has received a budget commensurate with its importance to the American people. Mr. Chairman, I am here to congratulate this subcommittee and its members. About a decade ago, this subcommittee, through the energy and enthusiasm of the late Silvio O. Conte, forged the Decade of the Brain Congressional Resolution. This resolution, which NCR members vigorously lobbied for, articulated for the first time the promise and potential of the entire field of brain research and research on the nervous system. The leadership from this committee excited researchers, enthused patient advocates, and helped convince many private businesses, foundations and institutions that the time had come to focus on advances in understanding the human brain and in treating its disorders. What an exciting decade it has turned out to be. Molecular biology has transformed neuroscience more dramatically and more rapidly and more profoundly than any other area of biomedical research. Genetic linkage approaches have resulted in the identification of at least 50 neurologic disease genes, and in the chromosomal location of several hundred more, including Dushan type muscular dystrophy, myotonic dystrophy, Huntington's disease, sharcomaretooth disease, and neurofibromatosis. The gene defect for one type of ataxia has been identified and a blood test for identifying people who have the defect is already developed. Exciting progress is being made in genetic research in both Alzheimer's disease and Parkinson's disease. Animal models for these two diseases are allowing researchers to move ahead with powerful new tools. Tremendous progress is being made in understanding how intellectual stimulation affects brain cell development and how memories are made and stored. Neuroimaging techniques now permit the study for the human brain in vivo. Surgeons can now actually perform operations inside an MRI and view images of the brain as they are operating. The stigma attached to mental disorders is being pushed back, as the biological bases of these disorders is uncovered. New treatments are becoming available for many disorders of the brain, including Alzheimer's disease, Parkinson's disease, epilepsy, multiple sclerosis and migraine. The new therapy for stroke, the third leading cause of death in the United States, is revolutionizing how the medical community deals with this killer condition. For spinal cord injuries, we now know that prompt treatment with a steroid is improving the patient's prospects for functional recovery. The Decade of the Brain is living up to the scientific potential visualized in this room. Funding, however, has increased but not because of specific initiatives from Congress or the Administration. Rather, funding has increased because neuroscientists and NIH have realized the relevancy of this field to many, many disease areas. We applaud Director Harold Varmus' initiatives in setting the biology of brain disorders as one of his recognized areas of scientific opportunity. Mr. Chairman, as the chronological end of the Decade of the Brain approaches, it would be a mistake to assume that the era of exploration and accomplishment in brain science is also ending. It is only just beginning. In many ways, we are only just beginning to understand and treat these disorders. And none too soon. Demographers looking into the next century see a society grappling with huge populations affected by Alzheimer's disease, dementias, Parkinson's and depression. And that affects, as Mr. Mendoza just mentioned, not only affected patients, but in entire families and societies that have to provide care. Among new challenges for brain research are the following: neurogenetics. Amazing work is being conducted on the genetic causes of many brain disorders. However, this work is still in its infancy. The location, cloning and understanding of the progression of many neurogenetic diseases remains to be done. Gene mechanisms must be elucidated, diagnostic tests refined, treatment and prevention strategies developed. Neuroimaging. Brain mapping had made tremendous advances in just the last few years. Brain mapping involves both structural and functional mapping of specific brain areas. Such information is critical to improving effective neurosurgery, and reducing or avoiding injury to unaffected areas. Neurotherapeutics. Explosion of neuroscience has given great impetus to the development of new therapeutics agents. For their part, many leading pharmaceutical companies and smaller biotech companies have made the development of central nervous system products a major part of their discovery programs. However welcome this research is, and it is welcome, we must look to see if all areas benefit equally. In the recent spate of mergers and acquisitions in the pharmaceutical industry, the pressure is intense to develop products which have the market potential to recoup large costs of development and return a profit. Some brain disorders do affect millions of patients, while many others affect much smaller populations. Congress must not assume that because some areas are seeing breakthroughs that the development of new therapies will automatically follow. In summary, Mr. Chairman, the accomplishments of the Decade of the Brain as profound as they are only a down payment on curing these disorders. Brain disorders are extremely costly to the United States. They are often lifelong, chronic conditions leading to disability and death. A 1992 study by the National Foundation for Brain Research concluded that neurological, mental and addictive disorders cost $400 billion, 7.3 percent of our gross domestic product, or one in seven health care dollars. The members of NCR call on the members of this committee to reaffirm their commitment to the Decade of the Brain, to assure continuation of public awareness of the accomplishments of research in this area, and to recommit to attack the new challenges of brain research. This committee led the way before, and we are confident will do so again. NCR opposes the Administration's woefully inadequate budget recommendations for NIH, and recommends a 10 percent increase in the NIH brain research funding. This high level of approved project applications currently going unfunded assures that this commitment will be well spent, and lead us into the second decade of the brain. Thank you, Mr. Chairman. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness] [The prepared statement of Morgan Downey follows:] [Pages 1383 - 1389--The official Committee record contains additional material here.] Mr. Young. Mr. Downey, thank you very much. You have one more member of the panel, Larry. Mr. Hoffheimer. I would like to introduce Dan Perez. Mr. Perez. Mr. Chairman, it is a great pleasure to submit this testimony to you today. My name is Daniel Paul Perez, of Lexington, Massachusetts, and I am testifying today as President of the Facioscapularhumoral Society and as an individual who has this rare disorder called facioscapularhumoral muscular dystrophy. My testimony today is about the profound and devastating effects of a disease known as facioscapularhumoral disease, which is also known as FSH muscular dystrophy or FSHD, and of course, the urgent need for NIH funding for research on this disorder. The FSH disorder, otherwise known as facioscapularhumoral muscular dystrophy, or FSHD, is a neuromuscular disorder that is inherited in an autosomal dominant fashion and has an estimated frequency of 1 in 20,000. The major consequence of inheriting this disease is that of a progressive and severe loss of skeletal muscle, with the usual pattern of initial noticeable weakness of facial, scapular and upper arm muscles and subsequent developing weaknesses of other skeletal muscles. As a man with FSHD, I will tell you that it is a hard way to live, and that FSHD is a strong port. It will last a lifetime. No one should have to endure this disease. At 34 years of age, I consider myself a lifelong survivor of the severe trauma and tension of FSHD, and I do not say this lightly. I have dealt with the continuing, unrelenting and unending loss caused by FSHD from the first second, into the first minute, hour, day, week, over the months and through the years. Not for a moment is there a reprieve from the continual loss of my physical ability. Not for a moment is there a time for me to mourn. Not for a moment is there relief from the physical and mental pain that is a result of this disease. There is no known treatment and no known cause for this disease. FSHD has insidiously and systematically deprived me of my childhood, my adolescence, and a full range of choices in life. FSHD affects the way you walk, the way you dress, the way you work, the way you wash, the way you sleep, the way you relate, the way you parent, the way you love, the way in which you live and the way people perceive and treat you. I cannot smile. I can no longer hold a baby in my arms. I cannot close my eyes to sleep. I can no longer run or walk on the beach or climb stairs. Everyday I am aware of the things that I may not be able to do tomorrow. Look at what this disease does to people. Look at me. Look at what I see, a child with a profound hearing loss, the broken innocence of a child, alienation at an early age, a decision not to marry, a decision not to have biological children, disability in the prime of life. Incapacitation in middle age, the guilt of a parent, a lifetime of physical challenge, a suicide, a premature death, anxiety caused by uncontrollable loss, decades spent somewhere between the able and the disabled, the loss of ambulating and the unstopping atrophy and loss of muscle. The humiliation endured in the process. This is the reality for the tens of thousands of people living with FSHD in the United States. The men, women and children who live with the daily consequences of this devastating disease are your friends, neighbors, fellow taxpayers and contributors to the American way of life. With an historical 88 percent unemployment rate and an average educational achievement level of 14 years, we personally bear our burden of the health care costs and expenses to prepare for and maintain financial and personal independence. With quiet dignity, we live our lives as productively as possible with FSHD. Largely thanks to the efforts of Mr. Porter and your efforts, Mr. Chairman, NIH research funding continues to grow. However, I regret to say that there has been a loss of momentum on the only NIH project working on FSHD human molecular genetics. We need to create a core center for FSHD research to be run within the auspices of NIH. We need intramural NIH programs enacted immediately. We need extramural contracts and grant programs enacted immediately. We have met at the NIH with regard to this current crisis in our research. We all realize the profound loss of dedicated, intelligent professionals working on FSHD and the continuing need to attract, retain and maintain programs solely focused on FSHD. The FHS Society maintains that FSHD is an interesting problem and has merit scientifically. The mechanism of FSHD will have tremendous application to understanding and giving us insight into the molecular basis of all diseases related to the structure of the chromosomes. The total NIH funding for directly titled FSHD research for the fiscal year 1997 is approximately $500,000. This will drop to $150,000 per year by year's end, if no new grants are submitted or contracts issued. This is the United States of America. And in a country as great as ours, with all its technical means and ability, it should be absolutely clear, if not completely black and white, that the number one priority for individuals with FSHD and the one absolutely commanding imperative for the Federal Government is to initiate and accelerate in any way possible research on FSHD. With modest funding and a clear direction from Congress to the NIH to support research on FSHD, significant progress can be made in conquering and eliminating this and other devastating diseases. Mr. Chairman, again, thank you for providing this opportunity to testify before your subcommittee. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity represented by this witness] [The prepared statement of Daniel Perez follows:] [Pages 1392 - 1401--The official Committee record contains additional material here.] Mr. Young. Mr. Perez, thank you very much for a very, very thorough statement. Before the panel leaves the table, I would like to yield to my very distinguished colleague and long time member of this subcommittee, Mr. Stokes, for any comments or questions that he would have of the members of the panel. Mr. Stokes. Thank you very much, Mr. Chairman. I do not believe I have any questions, but I would like to make a brief statement. Personally, on this subcommittee throughout the year, we hear a lot of testimony from Americans about various diseases afflicting and affecting Americans. At no time have we heard any more eloquent testimony regarding any disease than we have here today from those who sit on this panel. I am particularly moved today by the presence of Mrs. Udall in this audience. I served in this body for many years with Mo Udall. He is a man for whom I, along with all of those of us who serve in this body have great admiration and great affection. He is probably one of the most eloquent persons who ever served in this body. History will record the fact that Mo Udall was one of the great Americans that served in this body. Of course, the presence of Muhammad Ali and Mrs. Ali, and I could say to you, Mrs. Ali, that Muhammad Ali's presence and his speaking on behalf of this cause does make a difference. I do not know of any other American held with the high esteem with which we all hold Muhammad Ali. It is just a great honor for those of us who sit on this committee to have him present here today, and to speak as eloquently as he still speaks through you. In our eyes, and the eyes of all Americans, he is still the greatest. We thank you for your appearance here today. Thank you, Mr. Chairman. Mr. Young. I would like to recognize at this point my colleague from Florida, another very distinguished member of this subcommittee, Dan Miller. Mr. Miller. Thank you, Mr. Chairman. Let me just take a minute to thank you all for testifying, all of you. This is my third year on this committee, and one of the real pleasures is the support that we can offer to NIH. I think what is important about Muhammad Ali's presence here and showing his support is not just for Parkinson's, which is very important, but for all the diseases that we face, is that it is important to the American people that NIH is a critical part of this Government. It is really one of the crown jewel of our Federal Government. It is something we can all be proud of. It is not a partisan issue. I think its so important to have someone like Muhammad Ali bring it to the attention of the American people that we need it for Parkinson's disease, but we need it for AIDS, we need it for cancer and other diseases. We just do not always get enough of that public support. So you really are contributing to the public awareness of the critical role that biomedical research is needed in this country, and the role the Federal Government has. So thank you for your presence here and thank all of you all for testifying today. Mr. Young. I also want to thank you, Lonnie and Muhammad Ali, and all the members of the panel for being here today. Do you have anything that you would like to add before we have another panel? Mrs. Ali. On a personal note, if your wife ever wants to call and talk, I will leave my phone number. Mr. Young. Okay, thank you. Well, it has been really great to have all of you here, and as both Mr. Stokes and Mr. Miller have said, the members of this subcommittee are dedicated to the eradication of these terrible diseases. We do the very best we can with the resources that are becoming more limited all the time. We will declare a very short brief recess now so that this panel can depart and Mr. and Mrs. Ali can depart, then we will get right back to the witness list. ---------- Wednesday, April 23, 1997. WITNESS MARTIN STEPHENS, HUMANE SOCIETY OF THE UNITED STATES Mr. Young. The committee will come back to order. We will declare the recess over and we will get back to the testimony. I would like to call to the table Doctor Martin Stephens, vice president of animal research issues of the Humane Society of the United States. I had mentioned earlier at the beginning of the afternoon session that, because we have a very lengthy agenda, we will abide by the five minute rule. Your entire statement will be placed in the record, and we would ask that you summarize it within five minutes. If you see my hand reaching over toward the gavel, that means it is almost five minutes. We are more than happy to hear from you. We apologize for the fact that you had to stay over this afternoon since you were on the morning schedule. You now have the floor, sir. Dr. Stephens. Thank you, Mr. Chairman. No problem about the delay. I am Doctor Martin Stephens, vice president for animal research issues at the Humane Society of the United States. The HSUS is the Nation's largest animal protection organization with over 4.7 million members and constituents. I am speaking today on behalf of the HSUS as well as the American Humane Association, the Doris Day Animal Rescue League, and the Massachusetts Society for the Prevention of Cruelty to Animals. We appreciate this opportunity to testify on the fiscal year 1998 appropriation for the National Institute of Environmental Health Sciences, which, as you know, Mr. Chairman, is one of the components of the National Institutes of Health. The organizations I represent today are part of an unusual coalition that includes not only animal protection societies, but also consumer product companies and a university. Our goal is to improve the welfare of animals used in the field of product safety testing. We seek to achieve this goal by encouraging the Federal Government to help industry modernize its testing methods. What unites the coalition is our conviction that we can have both improved consumer safety and a reduced reliance on animals in the use of safety assessment through the application of good science. In this regard, we applaud the Federal Government for establishing the Interagency Coordinating Committee for the Validation of Alternative Methods, with the acronym of ICCVAM. This is a multi-agency effort spearheaded by the NIEHS. We urge this appropriations subcommittee to support the work of ICCVAM. Before describing that interagency committee's activities, let me provide a little bit of background very briefly. As you know, Mr. Chairman, numerous Federal agencies regulate the product testing practices of industry. Historically, these Federal agencies have provided little guidance to industry on how to gain regulatory approval of new test methods, and particular companies sought guidance on how to conduct evaluations of new test methods. This is an expensive and complex process known as validation. Working with our coalition, the Congress turned this situation around in 1993. In the NIH Revitalization Act, Congress directed the NIEHS to expand and coordinate the Government's work on alternative methods. Specifically, the NIEHS was directed to carry out two activities: (1) establish criteria for the validation and regulatory acceptance of new alternative methods; and (2) to recommend a process through which scientifically validated alternative methods can be accepted for regulatory use. As the term is used in this legislation and in the field of laboratory animal welfare, alternatives are methods that replace, reduce, or refine the use of animals in specific tests. For example, a simple drug store kit has replaced the use of animals in pregnancy testing. We commend the NIEHS for its ongoing work in implementing the NIH Revitalization Act. In 1994, the NIEHS established the Interagency Coordinating Committee for the Validation of Alternative Methods which includes representatives from all relevant Federal regulatory agencies. In 1995, ICCVAM held a workshop on the validation and regulatory acceptance of toxicological test methods and issued its report earlier this year on the subject. The publication of that report was a landmark event in the process of modernizing toxicological methods and in decreasing reliance on traditional animal tests. The report provides the Federal Government's collective advice on how to validate new test methods, and it encourages industry to involve appropriate Government representatives in the validation programs at the earliest possible stages. The report also outlines the process that the Government will use in assessing regulatory acceptability of new test methods as well as principals that will govern that assessment. Mr. Chairman, the NIEHS is moving swiftly to translate the ICCVAM report into action. It is changing ICCVAM's status from an ad hoc body to a standing committee. Also, the NIEHS plans to establish a new center with a small staff to handle the day- to-day work of ICCVAM, such as organizing workshops. Since its inception, ICCVAM has become a major player in promoting the development, validation, and regulatory acceptance of alternative methods in the United States and internationally. This interagency committee is involving the various Federal agencies involved in the safety assessment process to speak with one voice when addressing industry's efforts to substitute new alternative methods for current animal tests. Mr. Chairman, the NIEHS' monetary investment in advancing alternative methods, though too small to constitute a line item in the agency's $319 million budget, will have a considerable impact in facilitating the private sector's adoption of more sophisticated and humane methods of safety testing. We therefore request that this committee express its support of the NIEHS' important work in advancing new alternative methods of safety testing in its report language on the 1998 Labor, HHS, Education appropriation. Thank you, Mr. Chairman. [The prepared statement of Martin Stephens follows:] [Pages 1406 - 1414--The official Committee record contains additional material here.] Mr. Young. Doctor, thank you very much for being here today. Mr. Miller, do you have any questions? Mr. Miller. No questions, Mr. Chairman. Mr. Young. Doctor Stephens, thank you very much. We appreciate your testimony. Again, we apologize for your having to stay over. Dr. Stephens. You're welcome, and thank you. ---------- Wednesday, April 23, 1997. WITNESS P. FREDERICK SPARLING, M.D., THE INFECTIOUS DISEASES SOCIETY OF AMERICA Mr. Young. Next, I invite Doctor Frederick Sparling, Professor and Chairman of the Department of Medicine at the University of North Carolina. Doctor Sparling was scheduled for the morning but time ran out. Doctor, we appreciate your staying over. Again, your entire statement will be placed in the record and we ask you to summarize it the best you can. You are now recognized, Doctor Sparling. Dr. Sparling. Thank you very much, Mr. Chairman. I am very grateful for your allowing us to testify and grateful for you sitting here and listening to us testify. I must say it is with some trepidation that I testify, because it is difficult to do so effectively after the power and the magnificence of the first panel. I am afraid we pale a bit. Nevertheless, I am here representing the Infectious Diseases Society of America, for which I sit as President this year. I would like to remind all of us that infectious diseases are the leading cause of death in the world, and the third leading cause of death in this country. Investment of sufficient monies into basic and clinical research today will dramatically reduce the health care costs and improve the quality of life for millions. We urge this committee to continue, as we are very well aware you have very strongly in the past, to support the NIH and the CDC, and to demonstrate your continued leadership and foresight by appropriating the much-needed funding, including funding increases, to combat and catch diseases in the future. Specific initiatives for which we hope you will ensure adequate funding include: First, emerging infectious diseases. The media attests that new and dangerous infectious diseases continue to challenge us. Books, movies, television have many stories, and we are all aware of that. Examples include Hanta virus infection, HIV, and the Ebola virus of emerging infections. And re-emerging infections are also common and include cholera, malaria, TB, and many others. The Centers for Disease Control has developed an action plan that emphasizes improved disease detection and response for these emerging infectious diseases. The Infectious Diseases Society believes that CDC could effectively use a total appropriation of $75 million to implement their worthwhile programs in fiscal year 1998. The Society also stresses the vital role that NIAID plays as CDC's partner in responding to the threat of emerging infectious diseases by conducting basic research in microbiology, immunology, and cell biology. Second, vaccine research and development. Immunizations are one of the most cost-effective things that we can do. For every $1 spent on immunizations as much as $29 can be saved in direct and indirect costs. Recent scientific advances have enabled the development of new vaccines and significant improvements in the efficacy and safety of existing vaccines. For example, the new chicken pox vaccine and the improved pertussis vaccine. Increased funding will enable NIAID and CDC to develop new and safer vaccines for many other serious infectious diseases, including AIDS, sexually transmitted diseases, TB, and Malaria. Funding for development of an adult immunization program by CDC can save thousands of lives and billions of dollars. Third, AIDS research. As you know, AIDS is now the leading cause of death among adults aged 25 to 44 in this country. NIAID is making great headway in AIDS research by developing combination drug therapies that appear to control the disease better, and a cure is not absolutely impossible in some cases. Continued funding of clinical trials is necessary to continue this progress. An AIDS vaccine will only be possible if there is strong and continuing support of basic research by the NIH. Fourth, STD prevention and treatment. A recent Institute of Medicine report notes that of the top ten most frequently reported diseases in this country, five are sexually transmitted. Approximately 12 million new cases of STDs occur annually, and the U.S. has the highest reported rate of curable STD in the developing world, which is shameful. The cost of ignoring STD treatment is enormous, estimated by the IOM to be about $10 million a year. Moreover, curable STDs left untreated can contribute to increased spread of HIV. The Society recommends a total STD prevention program budget of $145 million to enable CDC to implement the recommendations contained in the IOM report, and a $50 million increase in the funding for the Chlamydia Screening and Infertility Prevention program, a $2 million increase over the Administration's proposed budget. CDC's budget should be supported by additional basic STD research at the NIAID, for which we recommend a budget of $83.7 million. Fifth, and last, training and career grants. Mr. Chairman, the biomedical discoveries being made today had their origins in basic research in the past. Continued leadership and progress in combatting infectious diseases are directly related to our ability to train and to retain new investigators in the field, which is very much threatened, as you know. Academic health centers are fiscally challenged, as you know. More than ever before, rigorous support of training grants and research career development awards is essential to ensure the continuation of the science that will lead to the beneficial harvest of tomorrow. IDSA very much appreciates this opportunity to testify before you about the importance of adequate appropriations for research, prevention, and treatment of infectious diseases. We believe that you will continue to conclude, as we do, greater investment in these significant programs today will pay dividends in their future. Thank you very much. [The prepared statement of Frederick Sparling, M.D., follows:] [Pages 1418 - 1426--The official Committee record contains additional material here.] Mr. Young. Doctor, thank you very much. We appreciate your being here today and your testimony. Mr. Miller. Mr. Miller. No questions, Mr. Chairman. Thank you very much. Mr. Young. Thank you again, Doctor. ---------- Wednesday, April 23, 1997. WITNESS WARREN GREENBERG, MENDED HEARTS, INC. Mr. Young. I would now like to call Warren Greenberg, Ph.D., Chairman of the Committee on Lobbying and Legislation for the Mended Hearts, Inc. Doctor Greenberg, we have a very active Mended Hearts group in my district that I have the privilege of representing and I stay close in touch because mine has been mended. For those who claim that politicians don't have hearts, I can prove that I do because I have a picture of it. [Laughter.] Mr. Greenberg. I am pleased to be here, Mr. Chairman and members of the subcommittee. Mr. Young, I do know there is a Mended Hearts branch right in St. Petersburg, Florida, which I know you represent, and are very actively concerned about people with mended hearts. My name is Warren Greenberg. I am a professor of health economics and of health care sciences at the George Washington University. I am married and have a 22 year old daughter. I am here to testify for an increased appropriation for the National Heart, Lung, and Blood Institute. I am a victim of heart disease, and a beneficiary of the efforts of medical researchers to overcome this disease. I might also add that I am a member of Mended Hearts, as the Chairman notes, a support group of 24,000 members throughout the United States who have heart disease. I have been appointed lobbying and legislative chairperson of that group. It is a volunteer position. I am 54 years old. I was born with aortic stenosis, a narrowing of the heart valve. Throughout my entire life I have lived with heart disease, often incredibly severe. When I was in my early teens, my physicians did not allow me to play high school intramural sports, although I was a fine young athlete. At the age of 18, I was told not to play ball under any circumstances. In my early 20s, I was told to climb no more than two flights of stairs. By my early and mid-30s, I began to climb steps more and more slowly, often pausing to rest. I never carried an attache case in from work. It was too heavy. I would often balance a large book on my hips rather than carrying it outright in order to blunt the weight. I would walk two or three blocks on a level street to avoid going up three or four steps at the end of particular blocks. I could barely lift my newborn child. I could not help my wife take in the groceries. On May 7, 1982, at the age of 39, I had open heart surgery at the Cleveland Clinic to replace my diseased valve with the valve of a pig. After my sixth week recuperative period, I was amazed to find that not only was I able to walk, but I was also able to play tennis, to jog, and to exercise. I was able to live a normal life. By 1988, however, my new valve had failed. In August I again had cardiac surgery at the Cleveland Clinic to replace the failed valve with an artificial valve known as a St. Jude's valve. I again am able to live a relatively normal, very productive life, and I am deeply thankful for it. I still take a blood-thinning medicine, coumadin, which helps prevents clots in my new valve. At the same time, because of the medicine, I must be cognizant and careful of excessive bleeding. In 1983, I contracted endocarditis, an infection of the heart valve, from dental surgery which kept me in the hospital for six weeks. Whenever I have dental work, I now get intravenous penicillin to protect me against such infections. I realize that my valve is a mechanical device and can fail at any time. For nearly 15 years, thanks to the fruits of medical research, I have been able to travel abroad at least once a year, to jog in the park, to be a productive author of many scholarly articles, a number of books on the health care economy. I have been quoted often on my views on the U.S. health care system, and have made many television appearances. If it were not for the advances in research leading to improved techniques in open heart surgery, I would not have seen my 40th birthday. I would not be able to look forward to a life of many rewards and enjoyments. As an economist, I observe always the link between monetary resources and the development of innovation and technology. Health care research and cardiovascular research is no exception. I also understand as an economist that there are always competing uses for appropriated monies. However, cardiovascular diseases last year killed more than 950,000 Americans, more than 150,000 of whom were under the age of 65. Despite advances in medical research, these diseases remain the number one killer in the United States and the leading cause of disability. Mr. Chairman, others on the subcommittee, from my personal perspective, and for those in Mended Hearts, and for others in the United States who have heart disease or who will get it in their lifetime, consistent with congressional resolutions for the NIH, I ask for a doubling of the NIHLBI budget by the year 2002. To reach this funding goal I advocate a fiscal year 1998 appropriation of $1.65 billion for the NIHLBI to help further reduce the incidents and the degree of heart disease in this country. Thank you, Mr. Chairman. [The prepared statement of Warren Greenberg follows:] [Pages 1429 - 1434--The official Committee record contains additional material here.] Mr. Young. Mr. Greenberg, thank you very much. We appreciate your being here. Mr. Stokes, do you have any questions for Mr. Greenberg? Mr. Stokes. No questions, Mr. Chairman. Mr. Young. Mr. Miller, any questions? Mr. Miller. No questions. Thank you, Mr. Chairman. Mr. Young. Mr. Istook. Mr. Istook. I have no questions, Mr. Chairman. Mr. Greenberg. I might mention that I mentioned to Congressman Stokes before that I had open heart surgery at the Cleveland Clinic. I know Mr. Stokes represents that area. It turned out to be pretty good, Mr. Stokes. Mr. Stokes. I may say I also had open heart surgery at Cleveland Clinic, in my district. [Laughter.] Mr. Young. Thank you very much, Mr. Greenberg, for being here. Mr. Stokes and I, as well as you have a personal interest in any research dealing with heart issues. Mr. Greenberg. Thank you, Congressman. ---------- Wednesday, April 23, 1997. WITNESS MILLICENT GORHAM, NATIONAL BLACK NURSES ASSOCIATION Mr. Young. I would now like to invite Millicent Gorham to come to the table. She is the executive director of the National Black Nurses Association. We are happy to have you here today. I want to thank you and the members of the National Black Nurses Association for being so helpful to us as we try to enlarge our list of potential bone marrow donors. We have special recruiting programs, as you know, for minority donors. The Black Nurses Association has been very, very helpful, with this Committee, in having been involved in the creation of that program. We certainly appreciate it. We would like to recognize you for five minutes. Your entire statement will be placed in the record. Just a minute. I made a terrible mistake here. I would like to yield to Mr. Stokes to make the formal introduction of Millicent Gorham. Lou, I apologize for moving on too quickly there. Mr. Stokes. Thank you very much, Mr. Chairman. I appreciate your yielding to me for this purpose. I would just like to make a couple of brief remarks. Some few years ago, Millicent Gorham was my health legislative aide. At that time, for a period of about four years, she worked in that capacity for me. During that period of time, she also was the coordinator for the Congressional Black Caucus Health Brain Trust, which I happened to chair, and did an outstanding job in that capacity. She then went on to several other health organizations where she did an outstanding job. She comes before us today as the executive director for the National Black Nurses Association. That is a group that I am very proud of, as you are, Mr. Chairman. They represent about 150,000 African- American nurses. The organization was founded in Cleveland, Ohio, in my congressional district, 26 years ago. I have had the privilege and honor of working with all of them for many years. They do an enormously outstanding job in terms of minority issues as they relate to health. So, I am very pleased to welcome their executive director, Ms. Millicent Gorham, a very fine young lady, to our subcommittee. Mr. Young. Ms. Gorham, you have the floor. Ms. Gorham. Thank you, Mr. Chairman, Mr. Stokes, and to the entire subcommittee. The National Black Nurses Association urges the Congress to fund the nurse education and training programs at $65.3 million. Funds for these programs are essential for the education of registered nurses and advanced practice registered nurses who are oriented towards primary care, health promotion and disease prevention, and public health efforts in institutional and community settings. Moreover, there is a need for researchers and nursing faculty as well. The Congress is at the forefront of the dynamic changes in our health care system. With emerging models focusing on primary health care and community-based health care delivery, there is a pressing need for the preparation of culturally competent professional nurses who come from and return to practice in under-served areas. With less than 2 percent of African-Americans having advanced practice nursing degrees, it is only reasonable that Congress make every effort to ensure that nurses are appropriately educated so that they can manage the medical and health problems seen in the primary care and acute care settings in which they work. NBNA supports the $61 million for the National Institute of Nursing Research. Funding for NINR is to support research to reduce the risk factors associated with disease and disability, and to promote healthy lifestyles and behaviors. For example, NBNA member Doctor Loretta Sweet Jermott is working with adolescents to reduce the risk of HIV/AIDS. Doctor Jermott's work involves a coalition between nurse researchers and public schools. The Cleveland Chapter of the NBNA has developed a model to increase screenings to prevent retinal detachment associated with diabetes. NBNA asks that NIH and NINR adopt as a priority funding of community-based research to investigate and mitigate chronic health diseases, and to support research on the best, most efficacious delivery models for diverse populations within and outside of acute care settings. NBNA recommends $30 million for the U.S. Office of Minority Health. It is worth noting that NBNA is part of the 13-member Black Congress on Health Law and Economics which has received one of the ten cooperative grants from OMH. The grant supports the West Tallahatchee, Mississippi project. As part of this project, NBNA members provide health services that include childhood immunizations, screenings for hypertension and cholesterol, and health outreach services on cancer, diabetes, HIV/AIDS, and maternal and child health interventions. NBNA requests funding of $468 million for immunization programs for fiscal year 1998. While the Centers for Disease Control immunization coverage goals have been achieved for the individual vaccines, many children are still in need of one or more vaccinations. Major cities like Detroit, Newark, Philadelphia County, and Chicago need major outreach efforts to ensure that immunization rates are significantly increased. As part of the National Infant Immunization Week, yesterday D.C. NBNA members took the immunization message to the community by visiting beauty salons in Ward I. NBNA members and local beauticians will work together to push for higher local immunization rates. NBNA will be launching its campaign to immunize our children in six other cities in the United States this year. Violence is another major issue that NBNA believes needs special attention. In September of 1996, the Congressional Black Caucus Health Brain Trust recommended that the Congress fund a youth violence prevention initiative. This initiative would be consistent with the activities currently conducted under the auspices of the CDC Injury Control program. Hospital emergency room nurses and critical care nurses have seen more than their fair share of handgun victims. Nurses working in rehabilitative centers are caring for more and more young people who are disabled by violence. We must begin to fund community-based programs that educate and empower children, families, and health care providers to prevent violence. NBNA requests $20 million for the National Institutes of Health Office of Research on Women's Health for fiscal year 1998. RWH will host a conference this summer in Santa Fe for women of diverse populations and cultures. We anticipate the recommendations from this conference will generate more areas of study by that office. NBNA wholeheartedly supports the Women's Health Initiative. NBNA has recruited 2,300 women to be a part of this study. It is critical that minority women participate in clinical trials not only as subjects of the study, but also as those who help to design, implement, and interpret such studies. We need better data on how gender, ethnicity, and cultural differences impact diagnoses, treatment, and outcomes of diseases among different populations. Thank you for your attention on these critical health programs that impact African-American nurses and the communities that they serve. [The prepared statement of Millicent Gorham follows:] [Pages 1438 - 1449--The official Committee record contains additional material here.] Mr. Young. Ms. Gorham, thank you very much, and thank you for the good work that your organization does. Mr. Stokes, do you have any questions. Mr. Stokes. I have no questions, Mr. Chairman. Mr. Young. Mr. Istook, questions? Mr. Istook. No questions. Mr. Young. I thank you very much. I would now yield the Chair to Mr. Istook. Mr. Istook [assuming chair]. Thank you, Mr. Chairman. ---------- Wednesday, April 23, 1997. WITNESSES GLORIA REICH, M.D., AMERICAN TINNITUS ASSOCIATION MEGAN VIDIS Mr. Istook. I believe our next scheduled witness is Doctor Gloria Reich. I understand you are here on behalf of the American Tinnitus Association. Please proceed. Ms. Reich. Good afternoon, Mr. Chairman and Subcommittee Members, staff, and guests. I am Doctor Gloria Reich, executive director of the American Tinnitus Association. I am hearing impaired and I experience tinnitus, a condition shared by 50 million Americans. With me today is Megan Vidis, a businesswoman from Chicago and a member of our board of directors, who will in just a moment tell you about her tinnitus. What is tinnitus? It is the perception of sound when no sound is present. It can take the form of ringing, hissing, roaring, whistling, chirping, clicking. The noise can be intermittent or constant, with single or multiple tones. It can be subtle or at a life-shattering level. It can strike people of all ages, and for most it does not go away. Both knowledge and treatment of tinnitus have improved over the last two decades with increased research. There are, however, still many questions that remain unanswered. The mechanism that causes tinnitus is unknown, and that fact alone makes it impossible to diagnose and treat it properly. Two years ago, the National Institute on Deafness and other Communication Disorders conducted a tinnitus workshop and recommended three strategies for research. To date, five studies have been funded through this program, representing a great stride forward for tinnitus research within the NIDCD. For that, we are truly grateful. Just three years ago, the word ``tinnitus'' was not even mentioned in the NIDCD plan. Our own association, working with very limited funding, supports tinnitus research on a much more modest scale. We fund clinical studies that can produce more efficacious treatments for immediate use, or studies that collect pilot data needed to enable a researcher to apply for a larger NIDCD grant. It is extremely important in our view for Congress to fund medical research. It is important also that the Institutes receiving that funding truly respond to the public's need. Hearing problems, and tinnitus specifically, are the most prevalent health issue in this country but receive little attention in comparison to more visible life-threatening issues. We ask you please to generously support the funding for the National Institute on Deafness and other Communication Disorders, and to urge the NIDCD to continue providing for studies specifically about tinnitus. Megan. Ms. Vidis. Good afternoon. I would like to thank you for affording me the opportunity to offer a few words of personal testimony. My name is Megan Vidis. I am from Chicago. Today is my 38th birthday, which puts me in the lower spectrum of the age range for people suffering from tinnitus. About three years ago, I noticed a faint hum like the sound of a refrigerator running whenever I was in a quiet environment. It is an annoyance my doctor termed tinnitus, and untreatable. For a while it was just a minor nuisance, and then it escalated into a shrieking oscillating siren in my head. I could not sleep, I could not concentrate, and I could not work. I began a horrific odyssey from one doctor to another. I learned from them that tinnitus has no known cause or cure. It is viewed as a symptom of other conditions. I am tumor-free and my hearing is perfect, thank God. So they had no idea how to help me. Over the course of a year, I saw 14 doctors. After trying every treatment offered me and many thousands of dollars desperately trying to get this noise to subside, a doctor gave me oral steroids and suldane. This combination of drugs eventually calmed the squealing in my head. It is not gone, it never will be, but I can live with it for now. I can work, I got married, and I am expecting my first child. I would like to stress that my story puts me in a tiny minority of tinnitus sufferers. Most doctors prescribe some form of sedative and send sufferers home to live with this torture. They are not willing to try and treat tinnitus, and do not have the education to even know where to begin. I know that tinnitus is not fatal; it cannot take your life, but it can destroy it. Since the onset of my tinnitus, I have started a support group in Chicago and been elected to the board of directors of the American Tinnitus Association. I have spoken to many terrified people who have lost their ability to function as a member of society. They tell me of their paralyzing fear for what their futures hold, the possible descent into a life with nothing but noise, losing their worlds to a disorder no family member can hear or a friend understand. Worst of all is the total lack of hope for treatment. Awful pain and fear of the future is bearable if you have some hope. Today, tinnitus sufferers are offered no hope. The people in my support group cling to each other. We depend on each other for the understanding and empathy no one else offers us. My small group and the nearly 15 million American chronic sufferers of tinnitus deserve more than this. We deserve treatment. Thank you. [The prepared statement of Gloria Reich follows:] [Pages 1452 - 1458--The official Committee record contains additional material here.] Mr. Istook. Thank you very much. We certainly appreciate the testimony from each of you and your personal stories in particular. Thank you for coming. ---------- Wednesday, April 23, 1997. WITNESS ALBERT H. OWENS, JR., M.D., NATIONAL COALITION FOR CANCER RESEARCH Mr. Istook. Next on the schedule I believe is Doctor Albert Owens, Director of the Johns Hopkins Oncology Center, and president of the National Coalition for Cancer Research. Doctor Owens. Dr. Owens. Thank you, Mr. Chairman. I am the founding director of the Oncology Center, but I am currently the president of the National Coalition for Cancer Research which is why I am before you. We appreciate very much the opportunity to present testimony. I think we also appreciate the fact that this subcommittee and its Chairman have worked hard and have done very many things in behalf of support of biomedical research. I think we want to be sure that you have our expression of gratitude. In cancer, we have had some encouragement and good news in the last few years, because for the last four or five years the death rate due to various cancers has been declining. Lest we take heart falsely, however, realize that our population is growing and realize that our population is aging, and so when we say that we spend $100 billion on the care of cancer patients today, we are likely to be spending more tomorrow unless things improve, which is basically the rationale for our requesting more monies and continued support of cancer research. It is a complex set of diseases and I think it is going to be unravelled a step at a time. I am optimistic, and I think we all should be optimistic, about the outcome. In the last 20 or 30 years, we have probably learned more about the human body than we have in all preceding history. We are learning things about how genes work, we are learning things about the biochemistry of disease, and mechanism of action of drugs. They are building on one another, so that I think there is reason to be optimistic. I have come here two or three times I guess, it has been my privilege, to ask for money. You might say, well, we have a great many competing worthy causes that are represented before you. You might ask the question, how much public monies do you think ought to be devoted to the support of biomedical research? Well, if I were in the commercial sector and was trying to have a company that succeeded, for example, a pharmaceutical company I understand spends about 20 percent of their annual U.S. revenues on research. I know that the NIH appropriation this past year is $13 billion; $2 billion was allocated to the NCI. I also heard that the direct costs of annual health care in this country approach $1 trillion. So from that prospect, how much should we be devoting to research to improve our lot and reduce those costs? We have a gross domestic product of $7.9 trillion, I understand. So it is some of those perspectives that bring us back to ask. We are very, very encouraged by the congressional leadership that is attempting to double the NIH appropriation. It is not just that money is the answer; money is necessary but not sufficient. It seems to me that there are trends already that the best and the brightest in this country are not coming to medicine and medical science the way they were a decade ago. It seems that there are more and more academic health centers, if you will, that are under siege by virtue of all the chaotic changes in reimbursement for health care. I think many of them that we depend on are approaching the endangered species list. Patients, who, after all, have to participate in research protocols if we are going to learn whether we can more effectively deal with human disease, frequently are denied that opportunity because of the way their HMOs manage their costs. If you look at the fact that six or seven years are required and $600 or $700 million are required to get a new anti-cancer drug to market, I hope we can try to shorten those things, too. So, very briefly, I again thank you for what you have done. I would like to encourage everybody to do more, support the doubling of the budget. I think every bit of it is going to yield something of great value. I probably do not need to remind you, but discoveries are not only helpful to health care, but discoveries are supporting our biotechnology industry which, after all, has also got to compete in a world economy. Thank you very much. [The prepared statement of Albert Owens, M.D., follows:] [Pages 1461 - 1470--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Doctor Owens, and thank you for the further comments that are in your written statement that we will have in the record. We appreciate your testimony. ---------- Wednesday, April 23, 1997. WITNESS RICHARD TAFEL, LOG CABIN REPUBLICANS Mr. Istook. I believe we have Richard Tafel, of the Log Cabin Republicans, as our next witness. Understanding the time limitations, the number of people, we are attempting to hold it to five minutes. I do not know if Mr. Young did, but we will try to give some little signal, a tapping or some signal when you are at about four and a half minutes to kind of five you time to wrap up. Please proceed, Mr. Tafel. Mr. Tafel. I would like to thank this committee for the opportunity to testify on the important issue of the Ryan White CARE Act. I am Richard Tafel, executive director of the Log Cabin Republicans. Before addressing the current and future needs for Ryan White, let me take a moment to thank this entire committee for its support of the Ryan White CARE programs last year. The fact that this committee, in conjunction with Senator Arlen Specter and the Senate subcommittee, was able to secure a $100 million increase above President Clinton's request last fall, clearly demonstrates your understanding of this rapidly evolving epidemic. I believe that it is safe to say that thanks to your leadership there are people alive today who might not have been had you not shown leadership on this issue in the last Congress. The original Ryan White bill was written for an AIDS crisis in the late 1980s, and largely focused on urban areas where health care systems were overloaded and strained with a swelling caseload with very little in the way of effective therapies. The 1990 act focused largely on an epidemic that is undergoing a transformation even today, one which we may soon have a completely different set of funding needs to be met by the Federal response. By 1995, the disease was no longer simply an urban problem. There were people with AIDS in every State. Old formulas designed for the disease in 1990 were changed to ensure fairness and equity for people with AIDS wherever they lived in this country. However, with an epidemic like AIDS, none of us has a crystal ball with which we can completely see the future. As we were all still putting the final touches on the 1996 reauthorization, science brought about dramatic changes in the epidemic. The availability of new drugs has brought the first really good news during this epidemic. Protease inhibitors taken in combination with nucleoside analog drugs have brought about dramatic results in many people with AIDS. Viral loads have decreased to almost unreadable levels, some immune systems have rebounded, and people with AIDS have risen out of hospital beds to return to work. Early intervention with these drug combinations have shown that many recently infected HIV patients may be spared the onset of AIDS for a much longer period of time than without the therapies. By its very nature, a program like Ryan White, which is built to serve the needs of people with AIDS, and is only reauthorized every five years, requires a responsive appropriations process that keeps pace with the shifts in an unpredictable epidemic. The committee has shown through its actions last fall and by holding hearings now that it is willing to show leadership where others have offered rhetoric. As people with AIDS begin to use the protease inhibitors and combination therapy, the AIDS Drug Assistance Program, known as ADAP, which had been developed largely to support only one drug therapy, has been used very sparingly in the past years. ADAP was created to fund drug access for those patients not poor or sick enough to qualify for Medicare, yet not adequately insured. Throughout 1996, people who never used any AIDS drugs were hearing the good news about the combination therapies and seeking to use them. The influx of sudden demand of these life- saving and life-extending drugs stressed the ADAP programs around the country to the breaking point. Many States were wary to add the new drugs to their ADAP formularies for fear the program would be overwhelmed. Other States saw their ADAP programs literally crash and close from the strain. So, in a sense, it was the best of times and the worst of times. To add another dilemma to this equation, patients who begin using the protease inhibitors and then suffer an interruption in their treatment may develop a resistance to the drugs rendering them ineffective once the treatment is resumed. Congress responded in 1996 with a series of emergency increases for Ryan White. But the impact of these new drug therapies is widening and we can not yet say the problem of access and consistency of care is solved. Unless the safety net is in place adequately meeting the needs created by these new class of patients, people with AIDS will face a disincentive to go back to work, and will continue using the therapies that would keep them on Medicaid at a higher cost to the Government and possibly shortening their lives. We must all be committed to meeting the needs of people with AIDS in a team response, and the priority of every member of this team should be to save and extend as many lives as is possible with the funds that we have available in every sector. The Federal Government must take a lead by ensuring that through Ryan White CARE Act the ADAP program in Title II will have the needed increase of approximately $130 million to meet the needed projection for 1988. Additionally, State Governments must play their part in ensuring that they provide their share of funds to meet the Federal leadership. AIDS service providers should be looking immediately toward shifting funds and adapting their missions to focus to meet the new realities of this epidemic. ADAP program requires that States get the best price possible for breakthrough drugs, and drug makers, too, must continue to do what they can to help States achieve that goal. The New York Times recently reported a drop in the number of deaths from AIDS in New York City, and public health officials credited the success to the increased funding in the Ryan White CARE Act. How many programs does this committee appropriate funds for where you can actually see these dramatic results? How many programs can so clearly draw a direct line between a targeted funding increase and saving lives? I believe the Ryan White Care Act is a successful program which can meet the needs of patients of our Nation's most devastating epidemic. I hope this committee will again show the leadership it has shown in the past by meeting a tangible need that can literally save and extend people's lives. Thank you. [The prepared statement of Richard Tafel follows:] [Pages 1474 - 1479--The official Committee record contains additional material here.] Mr. Istook. Thank you very much. We appreciate your coming here today to testify. ---------- Wednesday, April 23, 1997. WITNESS HON. DANIEL E. BOSLEY, REPRESENTATIVE IN THE MASSACHUSETTS HOUSE OF REPRESENTATIVES Mr. Istook. I believe we now have State Representative Daniel E. Bosley. Representative Bosley is here on behalf of Council of State Governments. Representative Bosley, welcome. Mr. Bosley. Thank you very much, Mr. Chairman. I appreciate the time. For the record, my name is Dan Bosley. I am a State Representative from Massachusetts, and I am here representing not only the House of Representatives in Massachusetts, but also I am here as an active member of the Council of State Governments' Eastern Regional Conference (CSG-ERC). CSG is one of the Nation's largest public interest groups whose members include governors, State legislators from the 50 United States and its territorial possessions. The Council is organized by regions of States or conferences; the ERC encompasses the northeast States, Puerto Rico, and the Virgin Islands. My testimony today expresses the concerns of their members, as well as the Massachusetts Legislature. I appreciate the opportunity to provide testimony as you deliberate your fiscal year 1998 appropriations for the Low- Income Home Energy Assistance Program, LIHEAP. I strongly support the continued funding for LIHEAP since it provides essential assistance to the region's low-income elderly, disabled, and the working poor households to pay for their winter heating bills. LIHEAP has provided assistance to almost 2 million low- income households in the eastern region. About 40 percent of those assisted have at least one family member who is elderly or disabled, and close to 90 percent have incomes of less than $12,000. I am sure that these are statistics you have all heard in the past as LIHEAP has been around for a while. Such numbers become more real to me when I think of them in terms of my own State. In Massachusetts we have 143,482 households--over 300,000 people--that relay on the LIHEAP program. These are among the neediest citizens of the Commonwealth. LIHEAP funding has experienced drastic cuts in the past ten years, from an initial appropriation of $2.1 billion in 1985, to $1 billion in fiscal year 1997. What this means for Massachusetts is that in 1985, the Commonwealth received nearly $87 million in LIHEAP funding, whereas last year we received only $46 million. The eligible participants of LIHEAP continue to grow as funding continues to be cut. Who can be expected to assume this cost? In Massachusetts, we have some very innovative programs; as a matter of fact, we received a REACH award last year for innovation within the LIHEAP program. We have tried to pick up as much as we can, assume the cost as much as we can. The State has picked up some of the cost, we have local foundations that have picked up costs, and, as eligible constituents have grown for this program, our utilities have picked up a tremendous amount of the cost. But all of those dollars have been stretched and at this point the glue that holds them altogether so that we can link them altogether is the Federal dollars. LIHEAP thus far has been a very successful cost-effective program in helping low-income households pay their energy bills. It helps prevent fuel supply shut-offs, spares limited dollars to be used towards purchasing other basic necessities. The funding cuts since the last three authorizations have forced States to tighten their eligibility standards and, in some cases, reduce benefit levels. As was the case in Massachusetts this winter, thousands of households exhausted their maximum LIHEAP allowance by mid-January and were faced with the possibility of having to survive the coldest days of winter without assistance. The release of emergency funds helped us to alleviate that position. We still had families that ran out of LIHEAP funding. LIHEAP is the foundation for a whole system of public and private programs and policies that help to maintain safe and affordable energy services for low-income households. Only LIHEAP can provide a sufficient cash grant to permit Federal, State, utilities, and private resources to leverage each other to provide coordinated responses. States have been taking steps to leverage LIHEAP funding by actively supporting partnerships with utilities and other fuel providers. In Massachusetts, I might add, $46 million is what we received in LIHEAP, utilities ponied up $38 million in funds. We were able to almost double that because of the LIHEAP funding. Programs include utility rate discounts, arrearage forgiveness, State supplemental aid. In addition, States have encouraged facilities to establish fuel funds allowing individuals to contribute funds to help poor families meet their home energy expenses. In my State of Massachusetts, for example, we have developed several innovative approaches to stretch the LIHEAP dollars for heating oil purchases. First, the State requires the participating heating oil dealers agree to accept a rate of payment equal to 25 cents over wholesale price, resulting in a discount of between 10 and 15 cents per gallon. While this may not seem like much, for some households this can result in a discount of close to $150 over the course of the winter heating season. While program statistics and descriptions can certainly help explain the operational aspects of LIHEAP, what is more important to me are the people who are behind the numbers. My district has suffered greatly in recent years due to defense shutdowns and the movement of manufacturing plants. For many of the households in my district the availability of LIHEAP has made the difference between staying warm in the winter and having to choose between the purchases of medicine, food, and other necessities. While I talk about statistics, for me, having talked to my local CAP agency, the person that doles out the LIHEAP money, it is not statistics but it is the family with the one, six, and the thirteen year old, where both parents work, the wife can not work full-time because there is no day care, there is no health insurance at the plant that the husband works at, so they spend $100 a week to cover their health insurance. LIHEAP helps them to bridge the payments for their fuel in the winter time. It means the family whose UI has run out, they are trying to keep the mortgage payment going, they are a working family, and basically these are working families that are using this to gap together payments in the wintertime so that they can continue both to feed their families and heat their households. Mr. Chairman, as a fellow legislator, as a committee chair, and as a past conferee of State budgets, I am aware of the pressures that this committee faces. I was listening to the competing interests for money as I was sitting here. I know that you have a competing interest of balancing the budget and meeting the social needs of this Nation. I am also involved in the review of many competing and worthwhile programs. Yet, after much reflection, I believe that the LIHEAP program is a program that should be maintained and supported because of the vital services that it provides. I appreciate the opportunity to testify before this subcommittee today. I am confident that you will do the right thing. [The prepared statement of Daniel Bosley follows:] [Pages 1483 - 1485--The official Committee record contains additional material here.] Mr. Istook. Thank you very much. We appreciate your testimony, Representative Bosley. Mr. Bosley. Thank you, Mr. Chairman. ---------- Wednesday, April 23, 1997. WITNESS ROGER GUARD, MEDICAL LIBRARY ASSOCIATION Mr. Istook. On behalf of the National Medical Library Association, Mr. Roger Guard. Welcome, Mr. Guard. Thank you for coming. Please proceed. Mr. Guard. Thank you, Mr. Chairman. I am Roger Guard, Director of University of Cincinnati Medical Center Academic Information Technology and Libraries. I speak today on behalf of the Medical Library Association and the Association of Academic Health Sciences Libraries in support of increased fiscal year 1998 funding for the National Library of Medicine. The Medical Library Association is a professional organization that represents over 5,000 members involved in the dissemination of biomedical information in support of patient care, education, and research. The Association of Academic Health Sciences Libraries is composed of the directors of libraries of 142 U.S. and Canadian medical schools belonging to the Association of American Medical Colleges. Mr. Chairman, last month our joint legislative task force was present when Doctor Donald Lindberg, NLM's Director, testified before this subcommittee. We were impressed with the tremendous progress NLM has made especially in the areas of information technology, telemedicine, and the Visible Human Project. NLM's outreach programs are designed to bring the most current medical information to health professionals. In 1991, a major medical journal published an article in which physicians reported positive changes in their diagnoses, choice of tests and drugs, length of hospital stay, and advice given to patients as a result of information provided by medical librarians. Between 1989 and 1994, NLM has supported 275 outreach projects involving over 500 institutions. Outreach projects are geared toward health professionals practicing in under-served geographic regions, those serving minority populations, and those needing critical HIV/AIDS information. Through the national network of Libraries of Medicine over 20,000 health professionals have learned more about medical information resources. However, outreach will not be complete until every health professional in this country is familiar with NLM's resources. NLM also works with other agencies to connect hospitals and biomedical institutions to the Internet. In addition, high performance computing and communications technology provides scientists and researchers with the computing power and networks necessary to create and share complex biomedical models. NLM is the critical investment agency for improving access to health care information. The health sciences library community applauds Congress for having the foresight to provide NLM with resources to support telemedicine and testbed network projects. These technologies will have a profound influence on future health care in this country, especially combined with the universal service provisions of the Telecommunications Act of 1996. It is essential that Congress provide adequate funding to NLM for the HPCC program and the next generation Internet initiative in fiscal year 1998 and beyond. NLM's long-term success depends on basic library services. Demand for basic services increase at a rate of 10 to 15 percent per year. Maintaining current standards will become more and more difficult if NLM's staffing levels and fiscal resources are allowed to decline. We urge Congress to restore staffing positions and the necessary financial support for them so that NLM can meet its increasing service needs and ensure that the quality of programs is not compromised. NLM's MedLine is the world's premiere biomedical information resource. In southern Ohio, northern Kentucky, and southeastern Indiana, the University of Cincinnati Medical Center and over 35 public and private partners provide consumer access to high quality health information via the World Wide Web. Although this demonstration project called ``NetWellness'' was seeded by a U.S. Department of Commerce matching grant, NLM's Medline remains the core information resource desired by NetWellness users. We've learned that Medline is nearly as important to consumers as it is to health professionals. The Medical Library Association and the Association of Academic Health Sciences Libraries strongly believe that the National Library of Medicine should receive an increase. Basic services will then be maintained and IRH and HCCP activities will expand significantly. Therefore, Mr. Chairman, we recommend a 9 percent increase in funding for NLM, bringing the library's total fiscal year 1998 appropriation to $164.7 million. Mr. Chairman, thank you very much for the opportunity to present our views. [The prepared statement of Roger Guard follows:] [Pages 1488 - 1495--The official Committee record contains additional material here.] Mr. Istook. Thank you very much. We appreciate your taking the time and effort to be with us. ---------- Wednesday, April 23, 1997. WITNESS A. GERALD ERICKSON, METROPOLITAN FAMILY SERVICES Mr. Istook. Our next witness is Mr. Gerald Erickson, president, Metropolitan Family Services. Mr. Erickson, welcome. Please go right ahead. Mr. Erickson. Thank you, Mr. Chairman, for the opportunity to present this testimony. My name is Jerry Erickson. I serve as president of Metropolitan Family Services in Chicago. It is the oldest and largest not-for-profit, non-sectarian human service organization in Illinois. We operate through some 25 neighborhood centers in the City of Chicago, suburban Cook County, and in west suburban DuPage County. We provide a range of services to something over 100,000 families every year. Our mission is to build strong families. We do this work primarily with private funding with some supplementation from Government sources. Sometimes families need just one service, perhaps economic assistance to tide them through a temporary financial crisis, or home health services to help a senior remain in their home. In other situations, families need access to a comprehensive network of services. For example, a family confronting the first psychotic episode of a teenager may need mental health services for the child, advocacy for the family in terms of a proper school placement, counselling for the family to cope with the grief of seeing a healthy child become sick with life-long consequences. We provide a range of services within our network so that families can get the help they need when they need it. Metropolitan Family Services works with the family system. When one family member is at risk, the entire family is affected. When families are strong, stable, and self- sufficient, communities are strengthened and all of us reap the benefits. While our focus on working with families has remained constant throughout the 140 years of our history, the needs of families have changed as culture and public policies have shifted. As communities, public systems, and families ask for our help, we respond. Over the past few years, we have begun to develop model programs to meet the changing needs of families in the area of Medicaid managed care, adoption services, and post-Head Start work with schools. Several characteristics of the Medicaid program make providing health services through managed care particularly complex: medicaid enrollment is typically short, lasting one year on the average; beneficiaries are often in poorer health than the general population and may represent an increased cost to managed care organizations; and Medicaid beneficiaries tend to live in communities with a limited number of health care providers, making it difficult to build networks in these communities. In order to realize the benefits of managed care, Medicaid beneficiaries must learn how to choose and how to use a managed care plan, and must be educated to change their health-seeking behavior to rely more on primary and preventive care than emergency care services. In partnership with our sister agency in New York, the Community Service Society, Metropolitan Family Services is in the process of developing an innovative program that would guide Medicaid recipients in accessing appropriate, effective, and cost-efficient primary health care through managed care. The workshops will be facilitated by trained volunteers who are residents of the targeted communities and, therefore, peer educators. Metropolitan Family Services asks that the Committee encourage HCFA to evaluate the degree to which consumer education programs assist vulnerable populations in urban, low- income settings to understand how to use preventive care for themselves and their children. Congress and the Administration want to double the rate of adoption by the year 2002 in order to decrease the amount of time spent in foster homes. We agree with the commitment to increasing adoptions, but we also believe that attention needs to be paid to what makes for a successful adoption within a family. It is crucial to provide services to match families with children, to educate families about what to expect from their child, and how to cope with the trauma unique to that child. Training and support from other adoptive families can help families overcome snags in the relationships as the adopted child enters new stages of his or her life. We are proud of the fact that in our work with over 400 troubled adoptive families, we have only seen two disrupted adoptions. We believe that, as Congress and the Administration move to increase adoptions, funding should also be made available for services to help these families deal with difficult children when love and structure is not enough. Finally, from reviewing literature for Head Start, we know that without follow-up work the gains of Head Start are often lost by the third grade. So when our Head Start classes graduated and began kindergarten, we developed a Jump Start program in partnership with three schools who would receive our children. The goal of the Jump Start program is to consolidate the gains of a Head Start experience by working with the schools and the parents to support parental involvement in the school lives of their children. It is too early to document results, but initial conversations with parents and teachers are very favorable. We ask that the committee encourage the Department of Education to consider demonstrating and evaluating programs such as Jump Start so that the success of Head Start turns into a success for the lifetime of our children. Thank you for this opportunity to testify. [The prepared statement of Gerald Erickson follows:] [Pages 1498 - 1504--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Mr. Erickson. We appreciate your testimony. ---------- Wednesday, April 23, 1997. WITNESSES ERIN BOSCH AND KATE KLUGMAN, THE NATIONAL COALITION FOR HEART AND STROKE RESEARCH Mr. Istook. Next, Ms. Erin Bosch and Ms. Kate Klugman. I understand you are here on behalf of the National Coalition for Heart and Stroke Research. Thank you both for coming. Ms. Bosch. Mr. Chairman, I am here to testify on behalf of the National Coalition for Heart and Stroke Research. My name is Erin Bosch. I am fifteen years old. Six months ago tomorrow, I was in Minnesota having open heart surgery at the Mayo Clinic. I have a genetic disease called hypertrophic cardiomyopathy. It causes the muscle below my aorta to balloon out and partially blocks the flow of blood through my heart. This disease causes high risk for heart attacks and sudden deaths from dangerous heart rhythms. The surgery I had is designed to lessen the obstruction by shaving away some of the muscle. This procedure was originally pioneered at the National Institutes of Health. My surgery was our last resort aside from transplanting. Before this surgery, NIH had implanted a therapeutic pacemaker in me because they had been shown to reduce the obstruction caused by the extra heart muscle. Without adequate funding for research, these options would not have been possible for me. Most people think heart disease is a problem that affects only older people. I am living proof that they are wrong. According to recent studies, 36 percent of young athletes who die suddenly have hypertrophic cardiomyopathy. Congenital heart disease is still the number one birth defect of children. Your child or grandchild could be born with heart disease. Thank you for the opportunity to speak to you today. I am hopeful that you will not forget about young people like me who depend on you for adequate funding for heart research so that we can live long, productive lives. Kate. Mrs. Klugman. Mr. Chairman, honorable members of the committee, it is a privilege to speak to you today. My name is Kate Klugman. I am here on behalf of the National Coalition for Heart and Stroke Research. I am also, most importantly, a mother and a wife. I know many people feel skeptical about Congress. Many people believe that Government can do no good and that everything in Washington is about the all mighty dollar. I am here to say that they are wrong. You as a body have done great things for those unfortunate people who, through no fault of their own, are sick and in real need of help. The Americans with Disabilities Act, and the help you have given to research to prevent, cure, and lessen the effects of stroke and heart disease are some of the finest things to ever come out of any Government. I know you face hard challenges in today's world. What you spend here you cannot spend there. You are faced with very, very difficult choices. The true measure of a society is how it treats the least of its members, how it cares for the sick and the needy. I am only 34 years old. Before my devastating stroke in June of 1995, I was a mother, a wife, an athlete, and a person vitally interested in my community. Now, after suffering a double brain stem ponds stroke, which left me totally paralyzed, unable to even blink, after a miraculous recovery, I am still a mother, a wife, and someone vitally interested in a broader community. Only now, I am all these things without the use of the left side of my body. Without the funding you have already given to fight stroke and heart disease, I would be none of these things. After my stroke, I suffered from ``locked in syndrome.'' I spent 50 days in the ICU. During those 50 days I was conscious, I could feel everything, I could feel pain, but I could not move any part of my body. I was totally trapped in my body, fed by a tube surgically placed in my stomach, breathing only by using a tube surgically placed in my throat. I could not speak, could not eat, could not drink, and could not move from the rigid death-like position my body had assumed. There was little hope for me to even live through the night, and, frankly, my doctor hoped I would not live since my future seemed so bleak. I am a very lucky woman. I lived. And more than that, I overcame the locked-in syndrome. My miracle did not come about without much prayer and much knowledge and great skill on the part of my doctors. The knowledge and skill my doctors possessed is something that this Government, acting at its best, helped make possible. Without years of research and many dollars provided by many men and women like you, I would not be here to talk to you today. Of course, the story does not end with my leaving ICU, it only begins there. I have been through countless hours of therapy. Physical therapy has been developed to its present stage with the help of funds provided in part by this Government. I have seen my own life come to a point where I could do nothing for myself. I found myself at 33 wearing a diaper and unable to control my own bodily functions. I saw myself unable to talk for months. All the communication I had with the outside world was limited to my blinking yes and no. I will not mention the physical pain for it was transitory. The tears of my daughters, eighteen month old Rachel and three year old Stephanie, would be enough if you saw them to convince you to fund research as one of your top priorities. If you could see what this has done to my husband, relatives, you would realize that stroke and heart disease is not just a problem that strikes one person; it strikes families and whole communities. Every minute in the United States someone suffers a stroke. Annually, stroke strikes more people than cigarette smoking kills. Each year over 500,000 people have a stroke. Nearly one- third will die within a few months. Almost all the survivors will be disabled for the rest of their lives. Heart disease and stroke cost this Nation over $259 billion in medical expenses and lost productivity in 1997. If we hope to save Medicare, which is one of this Congress' top priorities, we must learn to spend medical dollars wisely. With research we can prevent and cure stroke, thus saving billions of dollars and, in the bargain, saving innocent people from a living death. There is no greater good that you as a Congress could possibly do than to help the dedicated men and women who fight daily to prevent and cure stroke and heart disease. I pray you will generously help us. I will close by asking you to be just a little selfish. For if I can stand here today when yesterday I was the picture of health, so can you stand here tomorrow also the victim of stroke. I pray it would not happen to you, but within the next ten years it will happen to some of you, and it may happen to all of you. So please help, for in helping any of us, you help all of us. Thank you. [The prepared statement of Erin Bosch and Kate Klugman follows:] [Pages 1508 - 1511--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Ms. Bosch, Mrs. Klugman. We very much appreciate your testimony. ---------- Wednesday, April 25, 1998. WITNESS PATRICK WATERS, MONTGOMERY COUNTY, MARYLAND STROKE CLUB Mr. Istook. Now, Mr. Patrick Waters, president of the Montgomery County Stroke Club. Mr. Waters. Mr. Chairman, distinguished members of the committee. I am Patrick Waters and I am a left hemiplegic stroke survivor of seven years. I am currently the president of the Montgomery County, Maryland Stroke Club. The stroke club is a non-profit organization for stroke survivors and their families, and numbers about 400 as well as about 100 professionals. Stroke can happen to anyone. Stroke is the third leading cause of death in the United States. It strikes about 500,000 Americans each year, killing more than 154,000. Think about this, any one of your loved ones could be struck down by a stroke. It happened to three of our United States Presidents. I pray that none of you or yours will ever know this terrible suffering. My stroke occurred in February of 1989. I had taken an early retirement and I planned to begin a second career, travel, and manage my investment portfolio. The last two of my four children were nearly finished in college, and everything seemed to be going as planned. My stroke was due to an AVM, which, as far as I can understand, is a birthmark in the brain. My stroke was devastating enough, but was compounded by a severe fall in the hospital that involved a second hemorrhage. Soon after my surgery, I began to have severe burning pain on my entire paralyzed side. It was described as post-stroke syndrome by some, as supersensitivity by others, and also as thalamic pain since my AVM was in the thalamus. The National Institutes of Health was the only place where I was able to get literature on this condition. The burning paid I suffer is encountered when I walk on rugs. Shock waves travel up my weak side. I feel this pain whenever anyone or anything touches my left side. Even my own arm assaults me when it rests on my lap or dangles at my side. This pain is extremely exhausting. In recent years, I have heard from other stroke survivors who say they too suffer this pain. At this time, we are mostly told to learn to live with it. The long arduous task of physical therapy so I could walk again was lengthy, frustrating, and extremely expensive. But at least I had hope. With this pain, I feel despair for myself and others because, until help is found, we suffer. Please allocate $93 million for National Institute of Neurological Disorders and Stroke-supported stroke research and prevention in fiscal year 1998 so those in pain may find relief and, if not for us, for those who may be struck in the years to come. Being associated with a stroke club you see many young people whose futures are altered forever by stroke, and most have no future. Please give them hope through this funding. As a retired electrical engineer on the space program, I know this country is capable of achieving the near impossible. I believe this country can, and will, be the first to prevent strokes and possibly even undo the damage they have wreaked. Mr. Chairman, I thank you for allowing me to bare my soul. [The prepared statement of Patrick Waters follows:] [Pages 1514 - 1515--The official Committee record contains additional material here.] Mr. Istook. Mr. Waters, I sure thank you for coming and for being willing to share your personal experience. Mr. Waters. Mr. Chairman, I would like to introduce my lovely wife, just to let you know my luck isn't all that bad. [Laughter.] Mr. Istook. Mrs. Waters, so nice of you to be here. ---------- Wednesday, April 23, 1997. WITNESS JAN SHAPIRO, THE NATIONAL ALOPECIA AREATA FOUNDATION Mr. Istook. I believe we have next Ms. Jan Shapiro, on behalf of the National Alopecia Areata Foundation. Please go right ahead. Ms. Shapiro. Thank you. Good afternoon, Mr. Chairman. My name is Jan Shapiro, and I have had alopecia areata for fifteen years. The first twelve years of my life with alopecia I just had little spotty patches of hair loss on my head. Three years ago, I lost all of my hair; I have no hair whatsoever. This is known as alopecia universalis. I am also the support group leader for alopecia areata in the D.C. metropolitan area. I am testifying on behalf of the National Alopecia Areata Foundation, NAAF. NAAF is the largest organization in the Nation dedicated to finding a cure for alopecia areata. It also provides support for those with alopecia through a publication program and support groups. As a support group leader of NAAF, I am sometimes the first person outside the medical community that a person turns to for help and support. NAAF is also a member of, and is currently headquarters for, the Coalition of Patient Advocates for Skin Disease Research. The Coalition, which is a voluntary organization, receives no public or private money, and provides an umbrella to over 22 lay skin groups. These groups represent millions of people who suffer from a wide range of different skin diseases. Alopecia areata is a disease that strikes over 4 million Americans. Alopecia areata is basically the loss of hair. To some it is just a quarter-size spot of hair that usually can be covered by other hair that a person has. But for others it is the loss of every single hair follicle on their entire body, and again this is alopecia universalis; this is what I have. The condition strikes members of all ethnic groups, but it affects women and children most often. Hair loss has several effects. It reduces the protection for the body that the hair normally provides. The loss of eyelashes means that even the simple act of opening and closing one's eyes to get rid of dust is a difficult process for a lot of people. Alopecia areata is not simply a physical problem; it has serious psychological effects for a lot of people. When many people first discover their hair is falling out, they are absolutely devastated by this. They think they are the only ones in the world with the disease. Many times they go to their doctors and even their physicians have little knowledge as to what the disease is. Unfortunately, in our society the lack of information is not the only problem. People with alopecia areata are vulnerable to stares and rude comments from others. People with alopecia areata have lost their jobs because of their condition. A noted news anchor lost his on-air job because he was suddenly perceived as being unappealing. This lack of being appealing or being considered normal causes many people to lose confidence in themselves and then they begin to withdraw from society. This is especially, especially devastating for children who have this. Over half the people with this condition get the first symptoms between the ages of five and nine years old. Recently, two parents in tears called me about their children, two local girls here in the Fairfax area; one was twelve, the other was fourteen. They started doing less with friends, they are not going outside as much, and their grades are falling at school. They are afraid of harassment and non-acceptance, of not being or not feeling normal. Fortunately, people can help. In many of our support groups, people learn how they can help themselves both cosmetically and psychologically. The real solution here will be when we finally find a cure for alopecia areata. NAAF has raised and provided almost $1.5 million for research studies on the genetic structure of hair, the function of the immune system, and for supporting non-human research studies looking for the cause of alopecia areata. Part of our research program is to continue our work with the National Institute of Arthritis and Muscular Skeletal and Skin Diseases, NIAMS. One of the results from this joint program is that NIAMS funded a significant study on the structure of the disease. Working together in this private-public partnership is a significant step towards finding a cure finally. We hope to continue this relationship with NIAMS. The Coalition of Patient Advocates for Skin Disease Research asks that you too continue to support us, please. With an increase of 9 percent, much more can, and will, be done. This increase will allow the Institute to increase its ability to finance more research projects and support more programs that will help over 60 million people who are affected by skin diseases. We also believe that when a cure is finally found for any of these diseases, there is a good chance that it will help in finding a cure for many of the other skin diseases. Thank you so much for your time. [The prepared statement of Jan Shapiro follows:] [Pages 1518 - 1522--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Ms. Shapiro. ---------- Wednesday, April 23, 1997. WITNESS DALE GALASSI, THE NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS, INC. Mr. Istook. On behalf of the National Association of Community Health Centers, Dale Galassi. Mr. Galassi, I understand that you have a community health center in Mr. Porter's district. I'm sorry he wasn't able to be here personally to greet you. I can only try to do so on his behalf. Mr. Galassi. Thank you very much. To the Chairman and members of the committee, I thank you for this opportunity to testify. My name is Dale Galassi. I am here on behalf of the National Association of Community Health Centers. A written statement has been submitted for the record, so I will summarize my remarks. I serve as the executive director of the Lake County Community Health Center in Lake County Health Department located in northeastern Illinois. We are an urban county of 600,000 people, with 26,000 Medicaid-eligibles and 50,000 under-insured persons. We have a rich history of 40 years of providing primary care and numerous other services to our community. Our community health center now serves approximately 24,000 patients, 50 percent of whom are uninsured. Our constituency is primarily Hispanic and African-American. We are the only real alternative to expensive emergency room care. Yet, there are many patients in our community which we cannot serve due to a lack of resources. Health centers serve children and adults throughout our country. We are local, non-profit, community-owned programs providing comprehensive primary and preventive care to low- income and medically under-served people in both urban and rural America. Health centers are governed by community members who have an interest and commitment to affordable health care. One in every ten uninsured persons and one in every seven uninsured children in our country use health centers. The number of uninsured Americans is growing rapidly and could reach 50 million over the next several years. Nearly three- fifths of those are members of low-income working families who cannot afford to buy health insurance and, therefore, have no place to go for health care except costly hospital emergency rooms or to more efficient health centers. Repeatedly, independent studies and reports have shown health centers are one of our more efficient delivery systems in America. Every $100 million in grant funds leverage another $200 million in other resources and provides care to another 1 million patients. Health centers create jobs, provide an economic base, make better workers and students. Health centers make a difference. Yet, health centers are being threatened by the continuing erosion of private insurance coverage. Over the past three years, health centers have added 2 million new patients, of which 1 million are uninsured. This growth in new uninsured health center patients is wide spread and underscores the declining ability of other providers in all communities to continue to serve the uninsured. At my center, we have experienced a significant increase of uninsured persons coming to our doors for service. We see 50 percent of our patients as uninsured. Our situation is by no means unique. Other health centers in Illinois report as much as a 35 percent increase in uninsured in the last few years alone. NACHC and health centers across the country appreciate the Chairman and members of this committee for recognizing the importance of the Consolidated Health Centers program and for providing an increase for the centers in 1997. In particular, we thank Congressmen Bonilla and Dickey for their leadership in support of health centers. The new funds for 1997 will enable some 30 new health centers, including, I hope, Lake County, to care for 120,000 new uninsured patients across our country. However, additional Federal investment in health centers is needed to ensure the availability of primary and preventive health care in more medically under-served communities. As the number of uninsured persons increases, we must have a system in place that will provide health care for the most vulnerable and at-risk populations. Our health center is already in place, it is cost-effective, they are efficient, accountable, and they work. We urge you to build upon them. On behalf of the National Association of Community Health Centers and Lake County, I am asking your support for increased funding for fiscal year 1998 for the Consolidated Health Centers program. Please consider the following four recommendations: Consolidated Health Centers, community, migrant, homeless and public housing at $882 million; the National Health Service Corps at $145 million; black lung clinics at $5 million; and Ryan White AIDS, Title III-B, at $13.6 million. With these resource levels, the health center would serve an additional 650,000 low-income uninsured individuals in 1998 alone. This funding request is an investment. If funded adequately, the expanded presence of health centers and the availability of basic health services will contribute to a healthier, more productive America. Mr. Chairman and members of the committee, thank you for the privilege to speak to you today. [The prepared statement of Dale Galassi follows:] [Pages 1525 - 1533--The official Committee record contains additional material here.] Mr. Istook. Thank you, Mr. Galassi. I know that the Chairman will be certain to go through your remarks. Mr. Galassi. Thank you very much. Mr. Istook. We appreciate your testimony. ---------- Wednesday, April 23, 1997. WITNESS FRANCES B. PHILLIPS, THE NATIONAL ASSOCIATION OF COUNTY AND CITY HEALTH OFFICIALS Mr. Istook. On behalf of the National Association of County and City Health Officials, Frances B. Phillips. Welcome, Ms. Phillips. Ms. Phillips. Thank you, Mr. Chairman. It is a pleasure to be here. Mr. Istook. Please go right ahead. Ms. Phillips. I am Frances Phillips. I serve as health officer for Anne Arundel County and for the City of Annapolis, Maryland. The health department that I direct serves about 467,00 citizens, including several thousand who belong to Congressman Hoyer's district. I am here today to represent the National Association of County and City Health Officials, which serves the Nation's 3,000 local health departments. These are the agencies, large and small, in cities, counties, and townships that engage in a wide range of essential public health services. Most of the time, the work of the Nation's local public health departments goes on quietly; we go on in the business of preventing public health crises. We immunize children, maintain surveillance for infectious diseases, and watch out for new hazards in the environment. Our successes, in fact, are rarely recognized because when we are successful in prevention, nothing bad happens. As you know, good news rarely makes the news. In my county, I am very proud of our many prevention accomplishments. For instance, we have a nationally-recognized cancer prevention program which has successfully reduced breast cancer deaths by 15 percent in the past 5 years. What I would like to do for the few minutes that I have with you is to explain how a very modest but targeted addition to the appropriation for the Centers for Disease Control and Prevention's budget can help local health departments maintain our most basic function--that is, as first line of defense against imminent public health threats. Several weeks ago, I know that you will recall, it was found that school children in six States had been served frozen strawberries which were tainted with the Hepatitis A virus. It was local health departments in Michigan that first discovered the outbreaks of Hepatitis A, that reported them to State and Federal authorities, that led the investigation teams, and that ultimately found the cause. It was local health departments again that quickly organized programs to locate and immunize those children who may have consumed strawberries putting them at risk. In my county in Maryland last month, we experienced a similar sort of public health crisis. A champion college athlete in my county died quite suddenly of bacterial meningitis. The staff from Anne Arundel County as well as Baltimore City, where the student's college is located, immediately began identifying and treating with antibiotics those who had been exposed. We relied very heavily on rapid communication with State and other local health departments in order to respond to this widely publicized crisis. We exchanged very sophisticated lab data and analysis, we consulted with the CDC in Atlanta, and, ultimately, we followed up with a mass immunization, getting it done before Spring Break, of thousands of campus college students. The United States maintains well-trained armed services equipped for rapid response to military threats. We need to do the same for our local health departments. These are the people on the front lines, in the trenches, so to speak, to defend our communities from health threats. Local health departments are our early warning system. However, we are facing mounting challenges on all fronts. You heard in previous testimony about new and emerging infectious diseases, about the massive restructuring that is underway in our health care delivery system, as well as continued pressures on county and State budgets. Unfortunately, many health departments lack the basic tools with which to deal with these emergencies; those tools being training and technology. Every local health department needs computer modems, we need access to the Internet so that our response can be uniform and can be instantaneous when emergencies arise. Yet, more than one-third of the Nation's local health departments lack basic internet access and 85 percent of local health department employees lack access to e-mail. These are very standard tools today for rapid communication. They are also tools with which we are desperately in need of training in order to make use of what public health databases are available on the Internet. We hope that this subcommittee will consider favorably our proposal that $8 million, a modest sum in CDC's $2.2 billion budget, be allocated to the Office of the Director for the explicit purpose of improving our training and communications infrastructure. The need for training is one that I feel especially worth emphasizing. Even in a large metropolitan health department such as mine, we are continually challenged with maintaining up-to-date knowledge base in order to perform our skills and to keep our skills sharp. Thank you, Mr. Chairman. I appreciate the opportunity to come before you. I would be pleased to offer any further information you may wish for the record. [The prepared statement of Frances Phillips follows:] [Pages 1536 - 1548--The official Committee record contains additional material here.] Mr. Istook. Ms. Phillips, we certainly appreciate your testimony. Thank you for coming today. ---------- Wednesday, April 23, 1997. WITNESS ROBERT J. GUMNIT, M.D., THE NATIONAL ASSOCIATION OF EPILEPSY CENTERS Mr. Istook. We now have Doctor Robert Gumnit, appearing here today on behalf of the National Association of Epilepsy Centers. Doctor Gumnit, welcome. Dr. Gumnit. Thank you, Mr. Chairman. I am the president of MINCEP Epilepsy Care, which is a comprehensive epilepsy center in Minneapolis, Minnesota, and I am a clinical professor of neurology, neurosurgery, and pharmacy at the University of Minnesota. I am here today in my capacity as president of the National Association of Epilepsy Centers, which represents the 60 specialized epilepsy centers in the United States. About 2.5 million Americans have epilepsy, a chronic neurological condition defined as the occurrence of more than one seizure on more than one occasion. Each year about 100,000 new people are diagnosed with epilepsy. More than two-thirds of them are below the age of 25. Timely entry into the medical care system, making the correct diagnosis right away, and initiating appropriate treatment not only of the medical, but also of the psychological and social conditions of people with seizures have been major goals of the National Association of Epilepsy Centers. These goals are particularly important because the initial diagnosis of epilepsy is frequently made by primary care physicians, most of whom treat a very limited number of people with epilepsy. With the increased use of managed care and a greater dependence on primary care practitioners for managing patients with chronic disorders, it is increasingly important that new information be widely disseminated about the importance of an early and accurate diagnosis and the variety of treatment options available to achieve seizure control. We know that many people with epilepsy receive years of inadequate treatment and become unnecessarily disabled. For these reasons, NAEC has explored avenues within the Federal Government to educate health care practitioners and people with epilepsy and their families about the benefits of early intervention. This subcommittee was instrumental in initiating funding of an epilepsy program at the Centers for Disease Control. For 1998, NAEC seeks an extension of the CDC program at the originally requested level of only $1 million. The NAEC, the Epilepsy Foundation of America, and the American Epilepsy Society have been active participants in a working group with CDC to plan the future course of the epilepsy program. We are currently working together on plans for a conference to set objectives for improving the health of people with epilepsy and seizure disorders. The conference will bring experts in the field of epilepsy treatment and research together with patients and families afflicted with seizure disorders, as well as the public health and managed care professionals and primary care providers. Experts will present data from existing scientific literature to show that timely recognition of seizures and effective treatment can reduce the risk of subsequent brain damage as well as disability and death from injuries incurred during seizures. We also plan to discuss strategies for overcoming barriers to optimal health and functioning for people with seizures. The intent of the CDC epilepsy initiative is not only to improve the care of with epilepsy and seizure disorders, but also to contribute to the development of model strategies for the care of people with other chronic diseases. While treating epilepsy requires specific expertise among providers, the core health care services and system elements needed to provide optimal care for people with epilepsy is remarkably similar to those needed by people with other chronic diseases such as diabetes, asthma, and Parkinson's disease. We expect that this model epilepsy program fully worked out in the next few years will provide effective prevention, early recognition and treatment strategies that will not only improve the health and reduce the disability of people with seizures, but can be extended to individuals with other chronic diseases. We would also seek the support of the subcommittee in encouraging HCFA to expand its research and demonstration activities in improving the care of people with chronic diseases. The incidents of seizures among the Medicare population is much higher than among middle aged people and very, very high among people on medical assistance. We believe that ways can be found to provide better care at lower cost if we can come up with a systematic approach. Finally, I want to commend the subcommittee for its support of the National Institutes of Health and its increased budget. The epilepsy community strongly urges an increase in the neurological diseases budget. Mr. Chairman, we live in an era in which we have gone from a health care system that provided too many doctors and too much treatment to one that many of us fear will provide the patient with chronic disease too few doctors and too little treatment. That means the treatment has to be right the first time. Thank you for your support. [The prepared statement of Robert Gumnit, M.D., follows:] [Pages 1551 - 1558--The official Committee record contains additional material here.] Mr. Istook. Thank you very much, Doctor Gumnit. ---------- Wednesday, April 23, 1997. WITNESS JOHN S. GUSTAFSON, NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE DIRECTORS Mr. Istook. I think we have a winner of today's patience award, and that is our final witness, John Gustafson, for the National Association of State Alcohol and Drug Abuse Directors. Thank you for being patient. This is your time. Mr. Gustafson. Thank you, Mr. Chairman. Good afternoon. My name is Jack Gustafson, and I am the executive director of the National Association of State Alcohol and Drug Abuse Directors, which represents the concerns of the State alcohol and drug abuse authorities in the 50 States and Territories. These authorities, Mr. Chairman, provide funding, technical assistance, and support to over 7,000 community-based programs that deliver substance abuse treatment to a large number of prevention programs that help youth, pregnant and parenting women, and people of all ages avoid substance abuse problems. Our members manage a very comprehensive treatment and prevention system that exceeds some $4 billion in annual expenditures. Of this $4 billion, the primary Federal contribution is the Substance Abuse block grant, which this year was at $1.36 billion. I am here today to ask that the Substance Abuse block grant be increased by approximately 10 percent, from $1.36 billion to $1.5 billion. We are also requesting a 10 percent increase for the Knowledge Development and Application grant programs of the Substance Abuse and Mental Health Services Administration. We recommend an increase from $156 million to $171.6 million for both the Center for Substance Abuse Treatment and the Center for Substance Abuse Prevention. State alcohol and drug agencies feel that these investments are essential to meet the need for prevention and treatment, and that they will reduce social costs related to crime, health care, foster care, and welfare. Mr. Chairman, there are three key points I want to make today regarding this request for an increase. First, we must maintain our efforts to stem the increasing use of alcohol and other drugs by youth. I think clearly this committee is well aware of the recent findings from the 1996 National Institute on Drug Abuse ``Monitoring the Future'' study which shows alarming increases in marijuana use among eighth and tenth graders. It is important to note that these increases are on top of the increased levels of alcohol and other drug abuse that received so much attention in the recent presidential campaign. The Substance Abuse block grant includes a 20 percent set aside for prevention services. These dollars leverage additional money from State and local resources, and it is critical to continue support for this program. In addition, the block grant helps provide treatment for thousands of adolescents. In fiscal year 1994, over 46,000 minors were admitted to alcohol and other drug abuse treatment programs supported by State authorities. Additional block grant dollars will enable us to expand treatment capacity for youth. Second, there is a very significant and increasing need for treatment and prevention services. Last year our members reported over 63,000 individuals requested treatment, it was not available and they were placed on waiting lists. This is just the tip of the iceberg. Many people are frustrated. It is well known that treatment capacity is not there and people do not bother to present for treatment. Moreover, welfare reform and changes in the SSI and SSDI program will make additional treatment capacity an even greater imperative. Estimates of the number of people receiving TANF, Treatment Assistance to Needy Families, who have alcohol and other drug abuse problems range from 15 to 25 percent, which equals approximately 600,000 to 1 million people. As these former welfare recipients move into a work environment, they are going to have to turn to a State treatment system that is already over capacity and has many people on the waiting list. The third point I would like to emphasize is that treatment and prevention programs work and are cost-effective. These services are cost-effective. They save taxpayer dollars in the long-run and in the short-run. Treatment and prevention are effective because they not only reduce overall drug use and alcohol abuse, they reduce broader social problems that affect all Americans. There are many studies that we can cite, and we have provided them to committee members and staff in the past. I would recommend one very recent study done by the Center for Substance Abuse Treatment entitled the ``National Treatment Improvement Evaluation Study'' which found that marijuana, cocaine, and crack use declined by half after one year of treatment. Dramatic decreases in arrest rates were also noted. States have also conducted a variety of treatment effectiveness studies and some of their results include: Florida prisons treatment system reduced recidivism among clients by 19 percent; in your neighboring State, Mr. Chairman, Texas reduced arrest among its clients from almost 66 percent prior to treatment to only 30 percent one year after treatment. Prevention programs are equally effective. The commitment to prevention must be strengthened to ensure that programs that work are replicated. In summary, I want to request that the committee take into account the need for these additional treatment and prevention dollars which will be very well administered by a system of State and community providers. We are very interested in expanding additional accountability for our programs and working in partnership with the Federal Government as we move to expand our databases and our capacity to report on how these investments of public monies are being utilized. I greatly appreciate your attention, Mr. Chairman, and the opportunity to present to you this afternoon. Thank you. [Clerk's note.--Information required pursuant to clause 2(g)(4) of Rule XI of the Rules of the House of Representatives was not received from this witness or from an entity reresented by this witness] [The prepared statement of John Gustafson follows:] [Pages 1561 - 1566--The official Committee record contains additional material here.] Mr. Istook. Mr. Gustafson, I certainly appreciate your being here, your patience, your testimony, and your further information for the record. Thank you very much. The committee will stand adjourned until 10:00 tomorrow morning. M E M B E R S O F C O N G R E S S __________ Page Baldacci, Hon. J. E.............................................. 2276 Becerra, Hon. Xavier............................................. 2302 Bereuter, Hon. Doug.............................................. 2165 Bilbray, Hon. Brian.............................................. 2167 Blumenauer, Hon. Earl............................................ 2304 Bosley, Hon. D. E................................................ 1480 Brown, Hon. Corrine.............................................. 2151 Bunning, Hon. Jim................................................ 2230 Burton, Hon. Dan................................................. 2122 Capps, Hon. Walter............................................... 2083 Christensen, Hon. Jon............................................ 1971 Christian-Green, Hon. Donna...................................... 1992 Clay, Hon. Bill.................................................. 1992 Clayton, Hon. Eva................................................ 1992 DeGette, Hon. Diana.............................................. 2086 Dicks, Hon. Norman............................................... 1971 Dooley, Hon. Cal................................................. 2266 Edwards, Hon. Chet............................................... 1971 Fattah, Hon. Chaka............................................... 2273 Foley, Hon. Mark................................................. 2172 Fox, Hon. J. D...............................................2271, 2280 Furse, Hon. Elizabeth............................................ 2071 Goodling, Hon. W. F.............................................. 2185 Hamilton, Hon. L. H.............................................. 2313 Hansen, Hon. J. V................................................ 2295 Hayworth, Hon. J. D.............................................. 1971 Hilliard, Hon. E. F.............................................. 2301 Hinojosa, Hon. Ruben............................................. 2100 Jackson-Lee, Hon. Sheila.....................................2026, 2285 Johnson, Hon. E. B............................................... 1992 Johnson, Hon. Nancy.............................................. 2026 Kelly, Hon. Sue.................................................. 2246 Latham, Hon. Tom................................................. 2283 Lazio, Hon. Rick................................................. 2268 Lehman, Hon. William...........................................791, 801 Maloney, Hon. Carolyn............................................ 2026 McCain, Hon. John................................................ 1353 McCarthy, Hon. Carolyn........................................... 2026 McKeon, Hon. Buck................................................ 2298 Meek, Hon. C. P..............................................2151, 2177 Mica, Hon. John.................................................. 2151 Millender-McDonald, Hon. Juanita................................. 1992 Moran, Hon. J. P................................................. 2091 Morella, Hon. Connie............................................. 2026 Neal, Hon. Richard............................................... 2317 Nethercutt, Hon. G. R., Jr....................................... 2145 Norton, Hon. E. H................................................ 2026 Nussle, Hon. Jim................................................. 2239 Oberstar, Hon. James............................................. 2250 Olver, Hon. J. W................................................. 2281 Pallone, Hon. Frank, Jr......................................2105, 2274 Pomeroy, Hon. Earl............................................... 2314 Porter, Hon. J. E................................................ 2358 Poshard, Hon. Glenn.............................................. 2239 Riggs, Hon. Frank................................................ 2206 Roemer, Hon. Tim................................................. 2127 Rothman, Hon. Steven............................................. 2216 Sanders, Hon. Bernard............................................ 2278 Scott, Hon. R. C. ``Bobby''...................................... 2262 Shays, Hon. Christopher.......................................... 2308 Slaughter, Hon. L. M.........................................2026, 2111 Stearns, Hon. Cliff.............................................. 2117 Tauscher, Hon. Ellen............................................. 2026 Visclosky, Hon. Peter............................................ 2079 Waters, Hon. Maxine..........................................1992, 2200 Weygand, Hon. Bob................................................ 2137 Whitfield, Hon. Ed............................................... 2159 Wynn, Hon. Albert................................................ 1992 Young, Hon. Don.................................................. 2127 W I T N E S S E S __________ Page Alden, Michael................................................... 2904 Alexander, Richard............................................... 1771 Ali, Lonnie...................................................... 1365 Ali, Muhammad.................................................... 1365 Allen, W. R...................................................... 2653 Alonso-Mendoza, Emilio........................................... 1371 Ammann, A. J..................................................... 983 Ammerman, H. K................................................... 2818 Anderson, A. W................................................... 838 Anderson, Denise................................................. 860 Anderson, Harry.................................................. 1337 Anderson, John................................................... 860 Aquilino, J. D., Jr.............................................. 1346 Aquilino, J. Z................................................... 1346 Arnold, W. E..................................................... 9 Aronson, Emme.................................................... 258 Atkinson, W. B................................................... 2821 Avery, Martin.................................................... 1706 Baker, S. P...................................................... 249 Balster, Robert.................................................. 298 Barker, F. M..................................................... 1015 Barnett, Alice................................................... 585 Bassett, Brenda.................................................. 801 Batshaw, M. L.................................................... 2468 Beattie, D. S.................................................... 191 Bellermann, P. R. W.............................................. 1586 Belletto, Peter.................................................. 2609 Berns, K. I...................................................... 1 Block, Alvin..................................................... 2344 Bosch, Erin...................................................... 1505 Botset, Tracy.................................................... 258 Boyan, B. D...................................................... 872 Boyd, Merle...................................................... 2757 Brannon, Patsy................................................... 155 Breedlove, Roy................................................... 20 Breedlove, Taylor................................................ 20 Breslow, Jan..................................................... 117 Brody, W. R...................................................... 2491 Bronson, Dr. Oswald, Sr.......................................... 2151 Brown, L. P..................................................2340, 2533 Brown, Lynda..................................................... 1750 Brownstein, A. P................................................. 130 Bruton-Maree, Nancy.............................................. 482 Bufe, N. C....................................................... 1714 Bye, Dr. R. E., Jr............................................... 2440 Calkins, C. L.................................................... 69 Campbell, Christopher............................................ 227 Carpenter, Jeanne................................................ 762 Cazzetta, Ralph.................................................. 1215 Cerqueira, Manuel................................................ 945 Chadwick, Lynn................................................... 2605 Chaisson, Dr. Richard............................................ 2894 Charytan, Chaim.................................................. 1848 Ciccariello, Priscilla........................................... 105 Cioffi, Gina..................................................... 1213 Coben, J. H...................................................... 695 Cohen, B. M...................................................... 1935 Cole, Anthony.................................................... 1327 Collins, Michael................................................. 2871 Conn, P. M....................................................... 1839 Coulter, H. L.................................................... 578 Cox, C. M........................................................ 2667 Crabbs, B. L..................................................... 687 Cryer, P. E...................................................... 1639 Cunningham, M. P................................................. 1048 Davis, Rev. W. F................................................. 1723 Day, A. L........................................................ 2889 Debakey, Michael................................................. 45 Demaret, C. A.................................................... 1860 Dew, D. W........................................................ 2481 Dickey, Lori..................................................... 860 Dinsmore, Alan................................................... 2840 Dixon, J. E...................................................... 345 Downey, Morgan................................................... 1371 Drake, L. A...................................................... 429 Drugay, Marge.................................................... 896 Dubois, Helen.................................................... 2379 Duggan, E. S..................................................... 2860 Durant, John..................................................... 1285 Dwyer, Kevin..................................................... 2884 Ehrlich, Michael................................................. 20 Ein, Dan......................................................... 780 Emmens, Matt..................................................... 2515 Erickson, A. G................................................... 1496 Feder, Miriam.................................................... 2477 Fell, Linda...................................................... 165 Fernandez, H. A.................................................. 405 Fernandez, S. P.................................................. 591 Finkelstein, L. H................................................ 2484 Firpo, Adolfo.................................................... 1945 Flynn, L. M...................................................... 1621 Fonseca, Raymond................................................. 2522 Foreman, Spencer................................................. 2453 Fox, V. G........................................................ 370 Friedman, Harvey................................................. 1177 Futrell, N. N.................................................... 441 Gaebe, M. J. W................................................... 801 Galassi, Dale.................................................... 1523 Gedance, Suzanne................................................. 1274 Geisel, R. L..................................................... 2563 Gibson, D. M..................................................... 1154 Gipp, David...................................................... 2645 Gorham, Millicent................................................ 1435 Gorosh, Kathye................................................... 2721 Greenberg, Warren................................................ 1427 Guard, Roger..................................................... 1486 Guerrant, Richard................................................ 203 Gumnit, R. J..................................................... 1549 Gustafson, J. S.................................................. 1559 Hagen, R. J...................................................... 639 Hains, Ann....................................................... 2887 Hanle, Paul...................................................... 1075 Hannemann, R. E.................................................. 461 Harper, Francis.................................................. 309 Harr, P. B....................................................... 726 Harris, S. B..................................................... 2597 Hayes, Edward.................................................... 79 Helderman, Harold................................................ 179 Henderson, C. C.................................................. 2406 Hendricks, Karen................................................. 287 Herrera, Stanley................................................. 2320 Hirsch, Jules.................................................... 1783 Hoffheimer, Larry................................................ 1371 Hryhorczuk, Daniel............................................... 2772 Hubbard, J. B.................................................... 2675 Hughes, L. T..................................................... 1111 Hull, A. R....................................................... 1605 Hunter, Kathy.................................................... 2334 Hunter, T. H..................................................... 203 Ikenberry, S. O.................................................. 1199 Jackson, Beryl................................................... 1305 Jaffe, David..................................................... 1761 Janger, S. A..................................................... 2670 Javits, J. M..................................................... 2680 Jensen, Allan.................................................... 815 Jesien, George................................................... 2887 Johnson, Carolyn................................................. 907 Johnson, David................................................... 2568 Johnson, E. B.................................................... 2026 Johnson, Jennifer................................................ 2766 Jollivette, C. M................................................. 2549 Jones, L. A...................................................... 2347 Joyce, Michael................................................... 227 Kaeser, Lisa..................................................... 1294 Kapperman, Gaylen................................................ 1224 Kenmitz, J. W.................................................... 1316 Kenney, Kimberly................................................. 976 Kimmelman, Paul.................................................. 849 Kissick, W. L.................................................... 828 Klugman, Kate.................................................... 1505 Kownacki, Sandra................................................. 1039 Kraut, A. G...................................................... 1026 Krepcho, Dave.................................................... 791 Lampkins, Thornton............................................... 1605 LaPolla, Sheila.................................................. 1875 Larson, Dan...................................................... 1665 LaRusso, Nick.................................................... 130 Lavery, Jack..................................................... 995 Lazarus, G. S.................................................... 1888 Levine, Felice................................................... 509 Levinson, Wendy.................................................. 1896 Levitan, M. S.................................................... 334 Lewis, D. E...................................................... 2445 Lewis, Daniel.................................................... 1090 Lewis, Rosalie................................................... 1090 Lichtman, M. A................................................... 653 Ligosky, J. R.................................................... 108 Lindberg, Donald................................................. 45 Lindley, B. D.................................................... 394 Lokhandwala, Mustafa............................................. 1065 Lokovic, J. E.................................................... 2739 Lowe, W. L....................................................... 94 Lubinski, Christine.............................................. 770 Luke, R. G....................................................... 1814 Maloney, Justine................................................. 2884 Marchand, Paul................................................... 2884 Marcus, Ann...................................................... 2536 Marockie, H. R................................................... 567 Mason, Russell ``Bud''........................................... 2645 Mauderly, J. L................................................... 2558 Maul, K. I....................................................... 216 McEwen, B. S..................................................... 2691 McKnight, David.................................................. 130 McLeod, Renee.................................................... 2501 McMillan, Elise.................................................. 1797 McMillan, Will................................................... 1797 McNulty, Joseph.................................................. 1337 McSteen, Martha.................................................. 2584 Mesulam, M. M.................................................... 2901 Mitchem, Arnold.................................................. 600 Modell, Vicky.................................................... 1750 Molloy, Russ..................................................... 2528 Moody, J. K...................................................... 2417 Morgan, D. H..................................................... 354 Morgan, R. C., Jr................................................ 1189 Morgan, R. V..................................................... 1576 Mortensen, Colleen............................................... 165 Mullin, Leah..................................................... 704 Munro, Nancy..................................................... 493 Murstein, Denis.................................................. 2507 Musser, Erika.................................................... 1224 Myers, Terry-Jo.................................................. 2473 Neas, K. B....................................................... 2884 Norton, Nancy.................................................... 2370 Norton, Ruth..................................................... 105 O'Reilly, R. J................................................... 30 Olsson, C. A..................................................... 1121 Orelove, Fred.................................................... 2324 Orr, Alberta..................................................... 2840 Owens, A. H., Jr................................................. 1459 Parker-Jimenez, Joy.............................................. 317 Peck, S. B....................................................... 967 Perez, Daniel.................................................... 1371 Perkins, Joseph.................................................. 933 Phillips, F. B................................................... 1534 Pings, C. J...................................................... 2716 Prothrow-Stith, Deborah.......................................... 2879 Purves, Karen.................................................... 1143 Quaranta, M. A................................................... 665 Quigley, C. N.................................................... 552 Raezer, J. W..................................................... 1655 Rasure, Dana..................................................... 20 Rauscher, Frances................................................ 1264 Reed, D. J....................................................... 1167 Reich, Gloria.................................................... 1450 Reigart, J. R.................................................... 532 Reynolds, Mildred................................................ 1631 Rice, Donna...................................................... 334 Rich, R. R....................................................... 919 Richter, M. K.................................................... 2762 Rider, J. A...................................................... 227 Riley, E. P...................................................... 383 Robb, L. J....................................................... 1829 Robinowitz, Carolyn.............................................. 417 Robinson, H. A................................................... 542 Rodney, Laxley................................................... 2835 Roos, David...................................................... 704 Roper, W. L...................................................... 2387 Rosenthal, Suzanne............................................... 2370 Rothman, Arthur.................................................. 2216 Ruben, R. J...................................................... 736 Sabolich, John................................................... 239 Sabshin, Melvin.................................................. 504 Salazar, Javier.................................................. 770 Samuelson, J. I.................................................. 1738 Sanchez, Efrain.................................................. 1569 Sandoval, S. O................................................... 2830 Saylor, A. V..................................................... 2458 Schoenwolf, G. C................................................. 714 Schuyler, William................................................ 1867 Schwartz, P. E................................................... 1907 Schweikert, M. L................................................. 1686 Scrimshaw, Susan................................................. 750 Seatter, D. E.................................................... 678 Sellers, Julie................................................... 1099 Sever, J. L...................................................... 1957 Shalita, A. R.................................................... 2807 Shapiro, Jan..................................................... 1516 Shaver, Joan..................................................... 472 Shortbull, Tom................................................... 1004 Silver, H. J..................................................... 2865 Simpson, B. C.................................................... 1595 Smith, Barbara................................................... 2887 Snape, D. W...................................................... 2525 Solomon, Liza.................................................... 354 Sparling, P. F................................................... 1415 Stecher, Mary.................................................... 630 Stephens, Martin................................................. 1403 Sterling, Richard................................................ 1695 Stevens, Christine............................................... 2824 Stewart, Daisy................................................... 1132 Stossel, T. P.................................................... 884 Stubbs, P. E..................................................... 956 Sturdivant, J. N................................................. 2410 Suttie, John..................................................... 1251 Tafel, Richard................................................... 1471 Tarantino, Rich.................................................. 801 Taylor, S. D..................................................... 317 Terry, Sharon.................................................... 2488 Thompson, Travis................................................. 1797 Thorson, Kristin................................................. 2706 Towers, Jan...................................................... 451 Tuckson, R. V.................................................... 268 Turino, Gerard................................................... 143 Valenzuela, Carmen............................................... 521 Van Zelst, T. W.................................................. 2695 Vidis, Megan..................................................... 1450 Walgren, Kathleen................................................ 2374 Waters, Patrick.................................................. 1512 Weber, Dan....................................................... 1814 Weber, Phyllis................................................... 277 Weinberg, A. D................................................... 2347 Weiner, R. H..................................................... 2815 Weinstein, Michael............................................... 2577 Welch, S. H...................................................... 1305 White, David..................................................... 2394 Williams, Elaine................................................. 1240 Wilson, Robert................................................... 2518 Wine, Blanche.................................................... 1678 Wittenberg, H. R................................................. 2711 Wood, D. L....................................................... 58 Yager, D. V...................................................... 613 Zingale, Daniel.................................................. 770 Zudden, W. E..................................................... 1923 O R G A N I Z A T I O N A L I N D E X ---------- Page Ad Hoc Group for Medical Research Funding........................ 1 AIDS Action Council.............................................. 770 AIDS Drug Assistance Program..................................... 9 AIDS Healthcare Foundation....................................... 2577 Air Force Sergeants Association.................................. 2739 Alliance for Eye and Vision Research............................. 1274 Alzheimer's Association.......................................... 2901 American Academy of Child and Adolescent Psychiatry.............. 417 American Academy of Dermatology.................................. 429 American Academy of Family Physicians............................ 726 American Academy of Neurology.................................... 441 American Academy of Nurse Practitioners.......................... 451 American Academy of Opthalmology................................. 815 American Academy of Orthopaedic Surgeons......................... 20 American Academy of Otolaryngology--Head and Neck Surgery........ 736 American Academy of Pediatrics................................... 461 American Academy of Physicians Assistants........................ 2620 American Association for Cancer Research......................... 30 American Association for Dental Research......................... 872 American Association of American Universities.................... 2716 American Association of Anatomists............................... 714 American Association of Blood Banks.............................. 2781 American Association of Colleges of Nursing...................... 472 American Association of Colleges of Osteopathic Medicine......... 58 American Association of Critical-Care Nurses..................... 493 American Association of Dental Schools........................... 838 American Association of Immunologists............................ 919 American Association of Neurological Surgeons.................... 2889 American Association of Nurse Anesthetists....................... 482 American Association of Retired Persons.......................... 933 American Association of School Administrators.................... 849 American Association of University Affiliated Programs........... 2468 American Autoimmune Related Disease Association.................. 2761 American Cancer Society.......................................... 1048 American Chemical Society........................................ 79 American College of Cardiology................................... 945 American College of Rheumatology................................. 2353 American College of Preventive Medicine.......................... 2464 American Council on Education.................................... 1199 American Dental Association...................................... 956 American Dental Hygienists' Association.......................... 967 American Diabetes Association.................................... 1639 American Federation for Medical Research......................... 94 American Federation of Government Employees...................... 2410 American Foundation for AIDS Research............................ 983 American Foundation for the Blind................................ 2844 American Gas Association......................................... 2785 American Heart Association....................................... 117 American Indian Higher Education Consortium...................... 1004 American Legion.................................................. 2675 American Library Association..................................... 2406 American Lung Association........................................ 143 American Nurses Association...................................... 1240 American Optometric Association.................................. 1015 American Psychiatric Association................................. 504 American Psychological Association............................... 2751 American Psychological Society................................... 1026 American Public Power Association................................ 2853 American Public Television Stations.............................. 370 American Rehabilitation Association.............................. 2777 American Sleep Apnea Association................................. 2525 American Sleep Disorders Association............................. 2394 American Social Health Association............................... 2811 American Society for Clinical Nutrition.......................... 1783 American Society for Microbiology................................ 2432 American Society for Nutritional Sciences........................ 155 American Society for Parenteral and Enteral Nutrition............ 1783 American Society for Pharmacology and Experimental Therapeutics.. 1065 American Society of Clinical Pathologists........................ 165 American Society of Hematology................................... 884 American Society of Nephrology................................... 1814 American Society of Transplant Physicians........................ 179 American Society of Tropical Medicine and Hygiene................ 203 American Sociological Association................................ 509 American Therapeutic Recreation Association...................... 1111 American Tinnitus Association.................................... 1450 American Trauma Society.......................................... 216 American Urological Association.................................. 1121 American Vocational Association.................................. 1132 Amyotrophic Lateral Sclerosis Association........................ 2680 Animal Protection Institute...................................... 1143 Arthritis Foundation............................................. 687 Association for Health Research.................................. 2387 Association for Professionals in Infection Control and Epidemiology................................................... 1099 Association of American Medical Colleges......................... 191 Association of Minority Health Professions Schools............... 268 Association of Organ Procurement Organization.................... 277 Association of Outplacement Consulting Firms International....... 2746 Association of Professors of Dermatology......................... 2807 Association of Schools of Allied Health Professions.............. 1154 Association of Schools of Public Health.......................... 750 Association of University Environmental Health Sciences Centers.. 1167 Association of University Programs in Health Administration...... 405 Association of University Programs in Occupational Health and Safety......................................................... 2772 Astra Merck...................................................... 2515 Autism Society of America........................................ 1039 Autism........................................................... 2588 Blue Cross and Blue Shield Association........................... 1177 Braille Training................................................. 1224 Center for Civic Education....................................... 552 Center for Victims of Torture.................................... 521 Center Point..................................................... 317 Children's Brain Diseases Foundation............................. 227 Children's Environmental Health Network.......................... 532 Chronic Fatigue and Immune Dysfunction Syndrome Association...... 976 Cities Advocating Emergency AIDS relief.......................... 542 City of Newark................................................... 585 Close Up Foundation.............................................. 2670 Coalition for Health Funding..................................... 287 Coalition for Heritable Disorders of Connective Tissue........... 105 Coalition of EPSCOR States....................................... 394 Coalition of Northeastern Governors.............................. 2804 College of Physicians of Philadelphia............................ 828 College on Problems of Drug Dependence........................... 298 Consortium for Citizens With Disabilities........................ 2884 Consortium for Research and Practicum on Minority Males.......... 2835 Consortium of Social Science Associations........................ 2865 Consortium on School Networking.................................. 2849 Cooley's Anemia Foundation....................................... 1213 Core Center...................................................... 2721 Corporation for Public Broadcasting.............................. 2633 Council of Chief States School Officers.......................... 567 Council of State Administrators of Vocational Rehabilitation..... 1595 Council of State Governments..................................... 1480 Cystic Fibrosis Foundation....................................... 2494 Dana Alliance for Brain Initiatives.............................. 309 Digestive Disease National Coalition............................. 2370 Division for Early Childhood..................................... 2887 Dystonia Medical Research Foundation............................. 1090 Dystrophic Epidermolysis Bullosa Research Association of America. 2477 Empirical Therapies.............................................. 578 Endocrine Society................................................ 1839 Epilepsy Foundation of America................................... 762 ESA, Incorporated................................................ 2344 Family Planning Coalition........................................ 2701 FDA Council...................................................... 1867 Federation of American Societies for Experimental Biology........ 1251 Federation of Behavioral, Psychological and Cognitive Sciences... 2563 FHS Society...................................................... 1390 Fibromyalgia Network............................................. 2706 Fleet Reserve Association........................................ 69 Florida State University.....................................2440, 2549 Foundation for Ichthyosis and Related Skin Types (First)......... 334 Fred Hutchinson Cancer Research Center........................... 2510 Friends of Cancer Research....................................... 1285 Friends of National Institute of Child Health and Human Dev. Institute...................................................... 1294 Friends of the National Library of Medicine...................... 45 Genome Action Coalition.......................................... 1621 Harvard School of Public Health.................................. 2879 Haymarket House.................................................. 1327 Health Professions and Nursing Education Coalition............... 591 Helen Keller National Center for Deaf-Blind...................... 1337 Hispanic Association of Colleges and Universities................ 1576 Humane Society of the United States.............................. 1403 Illinois Collaboration on Youth.................................. 2507 Immune Deficiency Foundation..................................... 1860 In Defense of Animals............................................ 2855 Infectious Diseases Society of America........................... 1415 Injury Prevention Research Center................................ 695 Intercultural Cancer Council..................................... 2347 International Center for Public Health........................... 2540 International Society for Technology in Education................ 2849 International Union Against Tuberculosis and Lung Disease........ 2894 Interstate Conference of Employment Security Agencies............ 2734 Interstitial Cystitis Association................................ 2473 Jaffee Family Foundation......................................... 1761 Jeffrey Modell Foundation........................................ 1750 John Hopkins School of Hygiene and Public Health................. 249 John Hopkins Unversity........................................... 2491 Johnson and Wales Unversity...................................... 801 Joint Concil of Allergy, Asthma and Immunology................... 780 Joint Steering Committee for Public Policy....................... 345 Juvenile Diabetes Foundation..................................... 704 Karuk Tribe of California........................................ 2690 Labor Policy Association......................................... 613 Legal Action Center.............................................. 639 LeGrange Children's Mental Health Association.................... 630 Leukemia Society of America...................................... 653 Log Cabin Republicans............................................ 1471 Lovelace Respiratory Research Institute.......................... 2558 Lupus Foundation of America...................................... 995 McLean Hospital.................................................. 1935 Medical Library Association...................................... 1486 Mended Hearts.................................................... 1427 Metropolitan Family Services..................................... 1496 Minann, Incorporated............................................. 2695 Montefiore Medical Center........................................ 2453 Montgomery County Stroke Club.................................... 1512 Mystic Seaport................................................... 2667 National Aging and Visoin Network................................ 2840 National Alliance of State and Territorial AIDS Directors........ 354 National Alliance for the Mentally Ill........................... 2458 National Alopecia Areata Foundation.............................. 1516 National Assembly on School-Based Health Care.................... 2417 National Association for State Community Services Programs....... 2795 National Association of Anorexia Nervosa and Associated Disorders 258 National Association of Community Health Centers................. 1523 National Association of County and City Health Officials......... 1534 National Association of Epilepsy Centers......................... 1549 National Association of Music Merchants.......................... 1264 National Association of Pediatric Nurse Associates and Practitioners.................................................. 2501 National Association of Social Workers........................... 665 National Association of State Alcohol and Drug Abuse Directors... 1559 National Black Nurses Association................................ 1435 National Center for Tobacco-Free Kids............................ 2662 National Coalition for Cancer Research........................... 1459 National Coalition for Heart and Stroke Research................. 1505 National Coalition for Osteoporosis and Related Bone Diseases.... 2448 National Coalition for Promoting Physical Activity............... 2766 National Coalition for Research.................................. 1380 National Coalition of State and Alcohol Drug Treatment and Prevention Association......................................... 639 National Coalition of Survivors for Violence Prevention.......... 2882 National Coalition on Deaf-Blindness............................. 2871 National Collegiate Athletic Association......................... 2904 National Committee to Preserve Social Security................... 2584 National Congress of American Indians............................ 2653 National Council of Educational Opportunity Associations......... 600 National Council of Social Security Management Association....... 678 National Council on Rehabilitation Education..................... 2481 National Depressive and Manic-depressive Association............. 1631 National Energy Assistance Directors' Association................ 2800 National Federation of Community Broadcasters.................... 2605 National Foundation for Ectodermal Dysplasias.................... 2762 National Foundation of Brain Research............................ 1371 National Fuel Funds Network...................................... 2374 National Hemophilia Foundation................................... 2382 National Hep-Camp Association.................................... 1569 National Indian Education Association............................ 2358 National Indian Impacted Schools Association..................... 2609 National Institute for Automotive Service Excellence............. 2815 National Job Corps Coalition..................................... 2742 National Kidney Foundation....................................... 1605 National Marrow Donor Program.................................... 2830 National Medical Association..................................... 1189 National Military Family Association............................. 1655 National Minority Public Broadcasting Consortia.................. 2625 National Multiple Sclerosis Society.............................. 2597 National Neurofibromatosis Foundation............................ 1586 National Parkinson's Foundation........................1353, 1365, 1371 National Psoriasis Foundation.................................... 1678 National Public Radio............................................ 2445 National Senior Service Corps Directors Associations............. 1686 National Writing Project......................................... 1695 Navajo Nation.................................................... 1706 New York University--School of Education......................... 2536 New York University Medical Center............................... 2791 Northwestern University Traffic Institute........................ 1714 Nova Care Sabolich............................................... 239 NYU--Center for Cognition, Learning, Emotion and Memory.......... 2533 Organizations of Academic Family Medicine........................ 2711 Parkinson's Action Network....................................... 1738 Philadelphia Academy of Natural Sciences......................... 1075 Philadelphia College of Osteopathic Medicine..................... 2484 Polycystic Kidney Research Foundation............................ 1665 Prostatitis Foundation........................................... 1771 Public Broadcasting Services.................................2860, 1305 PXE International................................................ 2488 Reading is Fundamental........................................... 1829 Recording for the Blind and Dyslexic............................. 2563 Renal Physicians Association..................................... 1848 Research Society on Alcoholism................................... 383 Rotary International............................................. 1957 Sac and Fox Nation............................................... 2757 Science and Technology Advisory Committee........................ 2821 Society for Animal Protective Legislation....................2650, 2824 Society of General Internal Medicine............................. 1896 Society of Gynecologic Oncologists............................... 1907 Society of Neuroscience.......................................... 2691 Society of Toxicology............................................ 2498 South Florida Bread Food Bank.................................... 791 Sudden Infant Death Syndrome Alliance............................ 860 Tri-Council for Nursing.......................................... 896 United Distribution Companies.................................... 1923 United Ostomy Association........................................ 2379 United States Catholic Conference................................ 1723 United Tribes Technical College.................................. 2545 University of Medicine and Dentistry of New Jersey............... 2528 University of Miami..........................................2549, 2573 University of Pennsylvania School of Dental Medicine............. 2522 University of Puerto Rico........................................ 1945 Vanderbilt University............................................ 1797 Voice for Adoption............................................... 907 Wilson Foundation................................................ 2518 Wisconsin Regional Primate Research Center....................... 1316