Page images




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 her philia have been exposed to HIV, having a profound impact on families affected by hemophilia. With an 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).

2. 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 (HTC8 ) was originally funded by Congress in 1976 through the Maternal Child ealth (MCH) Block Grant set-aside. It is because of this comprehensive iemophilia network that we were 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 on an annual basis recommended. Many individuals in these

have not been tested for HIV, nor have their spouses sexual partners.

As 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 even 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.

[ocr errors][merged small][merged small]

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.



th blood che blond sult, 671 7 overa. sons vi

fapilia ars, and Sons wit atinue to

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.

9 for 71

care and

progres and the Control

Seeking a Cure for Hemophilla. 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$. The annual cost for

person with 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.

[merged small][ocr errors]



[ocr errors]

ational ophilia imenta

tain : tudies,



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.
Access To AIDS clinical Trials. There 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.

ensine eds of ophilie oviding 3, much


visits 8. 11 ned to entire

NHF requests continued appropriations support for NIAID's policy to ensure that hemophilia patients have full access to HIV/AIDS clinical trials, including pediatric protocols.

[blocks in formation]

their duals or no

that AIDS

AIDS Surveillance Research. The CDC Hematologic Diseases division has played a leadership role in conducting surveillance of the AIDS epidemic in the hemophilia community.


a result of this surveillance and laboratory support, the Public Health Service was able to document the spread of HIV, as 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.)

1193 ntinue

r 1992

? Sub Apr






Washington, DC.
The subcommittee met, at 10:10 a.m., in room SD-192, Dirksen
Senate Office Building, Hon. Dale Bumpers presiding.
Present: Senators Bumpers and Reid.



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 given us all a very difficult situation, and from that act we expect a growth of 4 to 5 percent over the 1991 level in total for this subcommittee. While I am sure we will agree on the importance of the several programs we will discuss this morning, the amount of funding increases we will be able to provide will be limited. I look forward to the advice of each of you in making the many difficult decisions that face us this year. STATEMENT OF DIANE GREYERBIEHL, VICE PRESIDENT, ASSOCIA.


NEL Senator BUMPERS. Our first witness—I am not going to attempt that last name. (Laughter.]

I will. Diane Greyerbiehl. Is that right?
Ms. GREYERBIEHL. Greyerbiehl.

Senator BUMPERS. Diane is vice president of the Association for Education of Rehabilitation Facility Personnel. Diane, welcome to the committee. We are anxious to hear from you.

Ms. GREYERBIEHL. Thank you. I am new at this. You will have to tell me when to start.

Senator BUMPERS. You start right now.

Ms. GREYERBIEHL, Mr. Chairman, there is an erosion in training funds for professionals who serve people with disabilities. This erosion is undermining the entire fabric of our service delivery system within rehabilitation facilities. I am here today as vice president of the Association for the Education of Rehabilitation Facility Personnel to request adequate funds for these training needs.

Let us assume for a moment that rehabilitation facilities are businesses not social service organizations. Rehabilitation facilities are a $2 billion a year industry that serves more than 1,600,000 individuals with severe disabilities in over 7,000 rehabilitation facilities. This is a significant industry by any standards. Industries of this size know that you have to constantly train employees to ensure a work force that knows the latest technology, work design, and management approaches that will produce quality products and services. As competition has increased, businesses have found this training essential. The demands on rehabilitation facilities are no less great because they must operate within the same business environment. Thus, a human resource development program for rehabilitation facilities must also focus on quality training.

Most American businesses are spending between 2 to 5 percent of their budget on human resource development. For rehabilitation facilities, this would mean spending between $40 and $100 million. Currently the Rehabilitation Services Administration is allocating only $4.9 million for facility training programs out of the total training budget of $33.53 million.

Further, if the present level of funding is continued at $33.53 million, this will represent only $3 million more than in 1979. Adjusted for inflation, this is a decrease in real funding of 65 percent. We need to reverse this trend of minimal increases so that workers with disabilities can be adequately trained to fill our increasing work force needs of the future and now and also meet the employment goals of the ADA.

« PreviousContinue »