Statement of Christine Lubinski
Deputy Executive Director, AIDS Action Council
to the Subcommittee on Labor, Health and Human Services,
Education and Related Agencies
House Committee on Appropriations
Part 1 of 2:
Mr. Chairman and Members of the Committee. I am Christine Lubinski, Deputy Executive Director of AIDS Action Council, the Washington representative of over 1400 community-based AIDS service providers from across the country. AIDS Action Council is the only national organization dedicated solely to shaping federal AIDS policy. We speak for all kinds of community-based AIDS organizations, including The HIV Coalition in Mt. Prospect, IL, The Napa County AIDS Project in Napa Valley, CA, AIDS Manasota in Sarasota, FL, and the Hot Springs AIDS Resource Center as well as the largest service providers in Los Angeles, San Francisco and New York.
Over half a million Americans have been diagnosed with AIDS and over 300,000 have died of the disease. These figures have made AIDS the leading cause of death among all American men and women aged 25 to 44. The real meaning of these numbers for policy makers can be found in a study reported in the November 24, 1995 issue of Science which estimated that one out of every 93 young American men, 3 out of every 100 young African-American men, and 1 out of every hundred young African-American women, are HIV-infected. The study goes on to suggest that our communities will be subjected to repeated "waves" of HIV infection among young people leading to ongoing and substantial increases in AIDS cases over the next decade.
I am pleased to be able to report to the committee today some good news about the state of the AIDS epidemic in the United States. For example, important strides have been made in HIV prevention. Infection rates among some populations are decreasing, in part as the result of successful and sustained community-based HIV prevention programs developed by and targeted to subgroups at highest risk for HIV infection. Unfortunately, we have not yet replicated models for this kind of community-based prevention in every town and city across this nation, and HIV infection rates among women and adolescents continue to rise.
More good news lies in the success of many areas of HIV research. For example, the nation's investment in biomedical research and the federal government's partnership with leading pharmaceutical companies has contributed several new drugs to the arsenal of treatments available to slow the progression of HIV disease. Early studies have indicated that when a new class of drugs -- protease inhibitors
-- is used with available antiviral medications as a triple combination therapy, the levels of HIV virus in the blood are reduced greatly. This so-called combination therapy holds the promise for significantly prolonging the quality and duration of life as we seek to move AIDS from a progressive, terminal illness to a manageable chronic disease.
The advent of the promising, but costly, protease inhibitors which supplement already expensive anti-viral drug regimens raises new questions about access to treatment for many Americans living with HIV/AIDS. Fewer than 25 percent of people living with HIV/AIDS have coverage for prescription drugs through private health insurance, while those individuals eligible for the Medicaid program, in many states, are often subject to limits on both the number of prescriptions allowed per beneficiary and the number of AIDS-related drugs available through state Medicaid formularies. The AIDS Drug Assistance program (ADAP), funded under Title II of the Ryan White CARE Act, is already overburdened by the demand of growing numbers of individuals in need of drug assistance. Few states will be able to even provide access to the new protease inhibitors, much less standard antiviral and prophylactic drugs, without a substantial investment in additional funding for this program.
Because AIDS is inevitably an impoverishing disease for the great majority of people who become infected, over the last 15 years an intricate, albeit fragile, AIDS care infrastructure has been built to ensure that impoverished and medically needy people with AIDS have access to basic health care and life-saving drugs. Erosion in private health insurance coverage, retrenchment in state Medicaid programs and growing caseloads have strained the ability of all programs funded under the Ryan White CARE Act to provide comprehensive services. Waiting lists and impossible choices between providing funds for life-sustaining prescription drugs, primary medical care or home health care are more and more commonplace as community-based care providers and their clients work to provide more services for more people without adequate resources. Today, the very programs that make up this fragile AIDS care infrastructure are all threatened by federal and state budget cuts.
With new drugs and an evolving standard of care comes the challenge of ensuring that health care professionals nationwide, in private practice and community clinics, from San Francisco to Pine Bluff and Tupelo have access to education and training about appropriate clinical practices and available therapies to treat the many clinical manifestations of HIV disease. Yet, this Subcommittee supported the elimination of all funding for the only federal health care training component of the national AIDS effort, the AIDS Education and Training Program (AETC), in the fiscal year 1996 House Labor-HHS Education Appropriations bill. Recent studies have clearly demonstrated a continuing urgent need for the AETC program. One study conducted at the University of Washington indicated that primary care physicians, regardless of date of graduation from medical school, frequently fail to accurately diagnose conditions related to HIV infection. Another important study correlated a direct relationship between survival
for AIDS patients and the level of HIV expertise of their health care providers. The AETC program provides the critical links between research and drug development and appropriate, effective medical treatment for people with HIV/AIDS.
The AIDS epidemic is the primary public health crisis of the 1990's. The toll of the AIDS epidemic on this nation in the next century will be determined, in part by the scope and depth of our commitment to respond to the opportunities and challenges in the areas of prevention, research and drug development, education and training and community-based health care and supportive services.
Fiscal Year 1996 & 1997 for Critical AIDS Programs
in the Labor-HHS Appropriations bill
The daunting task of responding to the AIDS epidemic which is not yet contained and for which there continues to be no preventive vaccine and no cure has been made even more difficult by a fragmented and inconclusive federal budgetary process. The failure to appropriate full year FY '96 funding for key federal AIDS programs has led to disruptions in local programs and services and tremendous uncertainty for people living with HIV and AIDS.
HIV prevention programs at the Centers for Disease Control and biomedical and behavioral research at the National Institutes of Health are funded through the 1996 fiscal year, but Congressional intent about the NIH's Office for AIDS Research (OAR) is still unclear. Funding for the Ryan White CARE Act, the AIDS Education and Training Centers and the AIDS Dental Reimbursement program ends on March 15, 1996. Other vital health programs which contribute to an effective response to the epidemic, including the Agency for Health Care Policy and Research and important mental health and substance abuse treatment and prevention programs also see their funding authority expire on March 15, 1996. Serious efforts to provide medical care, drug assistance and supportive services to people living with HIV/AIDS, to train health care providers, to provide substance abuse treatment which serves as primary prevention for HIV, cannot proceed effectively in a climate of budgetary uncertainty and 60-day
We urge you to proceed expeditiously to appropriate funds for all of these critical programs for the remainder of the 1996 fiscal year and to make final funding determinations based on the compelling national interest in reducing the toll of the AIDS epidemic and ensuring that Americans living with HIV/AIDS have access to high quality, comprehensive and compassionate care. What follows are our recommendations for completing the FY 96 appropriations process and an articulation of the needs and opportunities in critical AIDS programs for FY 97.
AIDS Research at the National Institutes of Health
This Subcommittee and the Congress as a whole have made a bipartisan commitment to maintain a vigorous national commitment to the flagship biomedical and behavioral research enterprise at the National Institutes of Health. We are grateful for the Congressional action which provided full fiscal year funding for the NIH with a considerable funding increase. However, the size and breadth of the AIDS research portfolio conducted by all 24 NIH Institutes requires a coordinated and strategic plan to ensure that scarce federal resources are being effectively managed to facilitate answers to the scientific questions which hold the greatest promise for even more effective treatments, a preventive vaccine and ultimately a cure for AIDS. The NIH Revitalization Act of 1993 significantly strengthened the federal AIDS research effort by vesting the Office for AIDS Research with the responsibility of tracking, coordinating and strategically targeting over $1 billion in federal research funds. In the last year, OAR has coordinated
a comprehensive review of the AIDS portfolio at the National Institutes of Health. The final report of the NIH AIDS Research Program Evaluation, due in March, will offer a critical review of the research being conducted at each institute. It is expected that the report will offer concrete solutions for longstanding problems at the NIH, including a proliferation of research grants budgeted as "AIDS" that have little or no relationship to the AIDS epidemic.
NIH AIDS research is part of our nation's larger commitment to biomedical research. As such AIDS research enhances and stimulates research in other fields, with broad implications for human diseases such as cancer, heart disease, Alzheimer's disease, and others. Twenty five percent of NIH AIDS research funds are used for basic science research, which has broad implications across scientific disciplines. As the subcommittee moves to develop its funding recommendations for fiscal year 1997, we urge the committee to continue to provide funding increases necessary to ensure the growth and vitality of the nation's research effort which is unparalleled anywhere in the world and to appropriate a consolidated appropriation for AIDS research under the auspices of the OAR so that the AIDS research effort is appropriately coordinated and managed.
Continued in Part 2
For more information, contact
AIDS Action Council
1875 Connecticut Avenue NW #700
Washington DC 20009