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fully fund a greater precentage of research grants.
hope that the Committee will encourage the NHLBI
increased research into critical care injury and illness, both
process of vessel and cell injury and function in multiorgan
system failure, the profound vascular and heart abnormalities
of sepsis, and the mechanisms of brain swelling in head
Emphasis should be directed at investigating these
disease processes that are central to our understanding of many
Care Medicine, we appreciate the opportunity to present our
views and stand ready to answer any questions you may have.
Senator ADAMS. Doctor, you are also interested in the Neurology Institute, I understand? I am sure a great portion of your critical care must involve the brain and spinal
Dr. GALLAGHER. That is correct, yes, sir.
Senator ADAMS. Thank you very much for your testimony. I have no further questions. You were an excellent witness.
Dr. GALLAGHER. Thank you.
PREPARED STATEMENT OF ALAN BROWNSTEIN
Senator ADAMS. At this point we will insert into the record the prepared statement of Mr. Alan Brownstein, executive director of the National Hemophilia Foundation.
[The statement follows:)
STATEMENT OF ALAN BROWNSTEIN, EXECUTIVE DIRECTOR,
NATIONAL HEMOPHILIA FOUNDATION
Dear Mr. Chairman and Members of the Subcommittee. I am Alan Brownstein, Executive Director of the National Hemophilia Foundation, a voluntary health agency working to improve the health and welfare of the 20,000 persons with hemophilia, von Willebrand's Disease and other clotting factor deficiencies in the U.S. Hemophilia is a lifelong, hereditary blood clotting disorder which affects males almost exclusively. The blood of
person with hemophilia does not clot due to the inactivity of a plasma protein in the blood. Without proper treatment, a person with hemophilia may experience uncontrolled, painful bleeding and/or chronic joint bleeding, resulting in progressive joint damage and crippling.
Persons with hemophilia prior to 1985 treated their bleed with blood components derived from hundreds of thousand of donors, but the blood components were neither heat-treated nor donor screened. As a result, 67% of severe hemophilia patients and 50% of the hemophilia population overall became HIV-infected. About 15-20% of spouses/sexual partners of persons with hemophilia have been exposed to HIV, having a profound impact on families affected by hemophilia. With incubation averaging 7 to 15 years, and infectivity occurring predominantly in 1982-1983, the number of persons with hemophilia to be diagnosed with full-blown AIDS is expected to continue to rise dramatically.
The National Hemophilia Foundation has four priority recommendations for FY 92 appropriations affecting hemophilia:
1. Provide a $2 million increase for expansion of comprehensive care and outreach activities through the Hemophilia Treatment Centers program administered by the Maternal and Child Health Bureau (MCHB) and the Hemophilia HIV/AIDS program administered by the Centers for Disease Control (CDC).
Within the increased funding for research at the National Heart, Lung and Blood Institute (NHLBI ). Establish a research initiative seeking a cure for hemophilia ($5 million).
3. Continue to include report language supportive of the National Institute of Allergy and Infectious Diseases (NIAID) policy that hemophilia patients have full access to clinical trials
HIV/AIDS experimental treatment, including pediatric protocols.
4. Include report language on the importance of having CDC maintain a program focus hematologic diseases, including epidemiology studies, laboratory, and disease prevention/control activities. Comprehensive Care and Outreach. The network of Hemophilia Treatment Centers (HTCS) wa originally funded by Congress in 1976 through the Maternal Child Pealth (MCH) Block Grant set-aside. It is because of this comprehensive iemophilia network that
able to quickly respond to the needs of individuals with hemophilia when the HIV/AIDS epidemic hit the hemophilia
ommunity. Although the HTCs have made a substantial impact in providing HIV/AIDS services to the hemophilia community in many geographic areas, much more needs to be done.
First of all, existing HTCs have seen a 300-400% increase in patient visits and a significant increase in visits per patient since the mid-1980s. In addition, an increased number of spouses and sexual partners have turned to HTCs for HIV testing, counseling and treatment services as well as entire families in need of psychosocial support.
Second, in small cities and rural areas, individuals with hemophilia have either never been seen in a comprehensive care setting or have chosen to seek care intermittently rather than
Many individuals in these areas have not been tested for HIV, nor have their spouses or sexual
the health status of these individuals deteriorate, they are seeking care at medical facilities with little or no experience in treating HIV and related problems. It should be noted that
in those parts of the country where the overall prevalence of HIV/AIDS is relatively low, hemophilia remains a major risk group.
In addition, in a number of geographic areas it is the HTC that provides the HIV-related services not only to people with hemophilia but to the community at large. These regionalized treatment centers represent the structural building blocks for AIDS treatment, counseling and risk reductions services but resources are desperately needed to meet demand.
in addition the diagnostic and treatment services, comprehensive care must involve community-based outreach, education and support. Last year the FY 91 Labor-HHS Appropriations Bill approved $1 million for Hemophilia consumer based activities. Current activities in place are:
a chapter outreach demonstration project, which
assists our local chapters' efforts to reach out to culturally diverse hemophilia populations so that they gain access to comprehensive hemophilia care and HIV/AIDS services.
a women's outreach network, a peer training program for women designed to develop skills in the areas of HIV risk reduction, outreach and support group building.
a men's advocacy network, a cooperative effort directed at improving ways of addressing HIV-related needs of men.
NHF has requested a $2 million increase in FY 92 for the HTC program and the hemophilia HIV/AIDS outreach activities.
Seeking a Cure for Hemophilia. There are significant personal and family financial cost burdens associated with treatment of this lifelong, hereditary disorder. Treating hemophilia with blood products has resulted in substantial morbidity and mortality, with over half of the hemophilia nopulation infected with HIV. In addition, well over 90% of this population
as been exposed to hepatitis. Only recently are new technology products showing potential promise of being hepatitis free.
18 new methods have been able to produce freer of human virus contaminates, prices have soared. Since late 1987, the price of factor replacement therapy has increased over 1000%.
with severe hemophilia treating between 30 and 50 bleeding episodes a year averages close to $100,000. Given these health and financial consequences, it is essential that the public sector take the lead in promoting research seeking a cure for hemophilia.
In the November 1990 issue of The Scientific American, hemophilia was identified as
one of the eight most promising diseases suitable for gene insertion therapy and an ideal prototype for developing the techniques of gene insertion therapy.
NHF is working with NHLBI to organize a major scientific workshop aimed at developing a genetic cure for hemophilia. NHF requests Congressional support for a concerted research initiative to seek a cure for hemophilia, including accelerated funding in FY92 of $5 million.
Acce88 ΤΟ AIDS clinical Trial.. There are many
clinical trials being conducted by the National Institute of Allergy and Infectious Diseases (NIAID) through the AIDS Clinical Trial Unit (ACTU) system. However, because of its geographic limitations and frequent isolation from the Hemophilia Treatment Centers system, the ACTU's essentially limited hemophilia access to these clinical studies. Thanks to the support of both Congress and NIAID, hemophilia patients have gained greater access by being able to participate "hrough their own Hemophilia Treatment Centers network. To date, there are s total of seven studies underway through our network.
NHF requests continued appropriations support for NIAID's policy to ensure that hemophilia patients have full
to HIV/AIDS clinical trials, including pediatric protocols.
AIDS Surveillance Research. The CDC Hematologic Diseases division has played a leadership role in conducting surveillance of the AIDS epidemic in the hemophilia community. As result of this surveillance and laboratory support, the Public Health Service was able to document the spread of HIV,
well as identify emerging methods of inactivating viruses in blood products. NHF urges that sufficient funding be provided to support CDC's Hematologic Diseases responsibilities.
SUBCOMMITTEE RECESS Senator ADAMS. The subcommittee will stand in recess until 9:30 a.m., Thursday, April 18, when we will meet in SD-192 to continue our public witness hearings on the administration's fiscal year 1992 budget request.
[Whereupon, at 12:32 p.m., Wednesday, April 17, the subcommittee was recessed, to reconvene at 9:30 a.m., Thursday, April 18.)
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 1992
THURSDAY, APRIL 18, 1991
OPENING REMARKS OF SENATOR DALE BUMPERS Senator BUMPERS. Today the subcommittee will continue with its third day of testimony from approximately 150 congressional and public witnesses. We have scheduled six sessions to hear this testimony. This year the committee had requests from 307 individuals and public organizations. Unfortunately, because of the limitations of time, we were only able to schedule the first 150 of the organizations who wrote to us. I personally wish we could hear from everybody, but the committee has made it known to those who did not make the cutoff that we would be pleased to publish their statements in the hearing record.
In order to stay on schedule, we are going to use this red-light system here which will give each witness 3 minutes to summarize the key points of his statement. I recognize that that is not enough time for people who feel very strongly about what they have come here to talk about, and I regret it. And I know it is a little bit demeaning to limit people to 3 minutes, and yet our time constraints absolutely dictate that we very strictly adhere to the 3-minute rule. And I would ask you to complete your statement by the time the 3-minute light goes on. This will give us time to ask a few questions perhaps, and it will also ensure that everybody gets a fair and equal chance to address the subcommittee.
Today we are going to hear testimony on a wide range of subjects, including education, rehabilitation, biomedical research, nursing, low income home energy assistance, and funding for programs that benefit children and the elderly, just to mention a few.
I have noted that a number of the statements suggest increases of well over $1 billion and well over 50-percent increases for some of the programs. Needless to say the Budget Enforcement Act has