Daniel Zingale's Statement to the Subcommittee on Labor, Health and Human Services, Education and Related Agencies House Committee on Appropriations
April 16, 1997
Mr. Chairman and Members of the Committee. 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 people living with HIV/AIDS they serve. AIDS Action Council is the only national organization dedicated solely to shaping federal AIDS policy. This work is supported by our members and individual donations. AIDS Action Council does not receive any federal funding.
We are at a pivotal moment in the history of the AIDS epidemic. I am sure you are all 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.
The bad news is that although 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. The increase in deaths of women and the lower death rate reductions among people of color is a poignant reminder that not all Americans are reaping the benefits of high quality AIDS care and more effective treatments. These disparities highlight stark inequities in the availability of state-of-the-art health care for women and people of color, care that people with HIV/AIDS need to stay alive.
"Access to care" means much more than the ability to purchase drugs. Drugs alone are not the answer. The unfortunate reality is that the new combination therapies with protease inhibitor drugs are not effective for all infected individuals. We are still learning about the potential of these new treatments, and we do not yet have the answers we need about why these treatments seem to produce dramatic health improvements for some people living with HIV/AIDS and not others, or 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.
To benefit from new drug therapies, people must have access to affordable, comprehensive medical and supportive services provided by well-trained and culturally competent health providers. 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 services.
This epidemic is far from over. While the overall number of people dying from AIDS declined significantly last year, the number of people living with AIDS did not. Blacks, hispanics and women accounted for increasing proportions of new AIDS cases in 1996. In 1996, blacks accounted for 41 percent of adults with AIDS, exceeding the proportion of people living with AIDS who were white for the first time. Women accounted for an all-time high of 20 percent of AIDS cases reported in 1996.
And tragically, the number of people newly-infected with HIV is not declining. Even now, over a decade into the epidemic, too many individuals do not realize they are at risk for HIV infection. Far too many people are not learning of their HIV status until they are hospitalized with a major AIDS-defining opportunistic infection, lamentably too late to realize the full benefits of early intervention with state-of-the-art therapies. Greater community-based education efforts and easier access to HIV counseling and anonymous testing is vital. The benefits of early intervention care services that hold the promise of significantly delaying disease progression can only be realized through aggressive education efforts that encourage individuals who realize they are at high-risk to be tested for HIV, so they can immediately be linked with comprehensive and coordinated systems of care.
Early intervention is not "true" prevention, of course. It is far less expensive -- and far more humane -- to prevent someone from becoming infected in the first place than to care for that person once they are infected. HIV infections continue to increase disproportionately among women, communities of color, and adolescents. Much of this increase is attributable to injection drug use and substance abuse generally, which contributes to unsafe sexual behavior among drug users and their sexual partners. Clearly, increased funding for community-based HIV prevention programs targeted to women, communities of color, adolescents, and drug users and their partners is urgently needed. But we cannot forget that substance abuse treatment also constitutes a potent HIV prevention strategy. Increased funding for substance abuse treatment and the removal of barriers that now prevent local communities from implementing syringe exchange programs, which have been scientifically proven to reduce HIV transmission and save lives, are essential parts of an overall HIV prevention strategy.
There is great promise in many of the recent developments in the fight against the AIDS epidemic and notable challenges and opportunities. The federal government must fulfill its responsibilities to safeguard and enhance the public health by adequately funding HIV prevention, research, care, training and substance abuse programs. This committee has shown extraordinary leadership in the past by making tough choices that have succeeded in providing funding for programs that save lives. If we are to continue to make progress in our fight against AIDS, we must look to you once again to provide increased resources. The national response to the AIDS epidemic must continue to reflect a comprehensive approach by providing adequate financial support for research, prevention, care, training and substance abuse treatment.
Absent a preventive vaccine, our only hope of halting further HIV transmission is through a comprehensive, targeted approach to AIDS prevention throughout the nation. Chronically underfunded for years, the Centers for Disease Control and Prevention (CDC) spearheads the federal government's prevention strategy. We propose a $212 million increase over FY '97 for the Centers for Disease Control & Prevention's (CDC) HIV prevention-related programs.
AIDS continues to be the leading cause of death among American women and men between the ages of 25 and 44, cruelly depriving them of years of productive life. Every year, 40,000 to 80,000 more Americans become infected with the human immunodeficiency virus (HIV), the virus that causes AIDS. Tragically, nearly 50 percent of the new infections occur in people younger than 25 years of age. And while men who have sex with men still account for a majority of cases among youth and men of color, rates of new infections are growing fastest among women, doubling every 1-2 years.
As I stated earlier, it is far less expensive -- and far more humane -- to prevent individuals from becoming HIV-positive in the first place. People become infected with HIV because they do not realize they are at risk or do not really know how to protect themselves from infection. As the recent NIH Consensus Conference on HIV Prevention made clear, we have prevention strategies that are scientifically proven to work. The problem is that as a nation, we have lacked the political and moral will to implement these proven community-based HIV prevention strategies. Educating people about behaviors that may place them at risk and providing them with the tools to protect themselves from becoming infected -- whether that means explicit information about sexual practices, distributing condoms, or providing clean needles -- are scientifically sound approaches to HIV prevention.
Prevention interventions are cost-effective. The Center for AIDS Prevention Studies at the University of California, San Francisco, estimates that adding $500 million to HIV prevention targeted to high-risk groups would yield medical care savings totaling $1.25 billion. HIV prevention programs have proven to save lives. Declines in infection rates among certain groups, most notably adult white gay men, is proof that targeted prevention efforts are successful. However, the increasing infection rates among people of color, women, and youth highlights the work and investment that is still needed.
We know what works. Now we must make sure local communities have the information and the resources they need to implement community-based prevention strategies geared to the specific demographics of the epidemic locally. Increased funding for the CDC's cooperative agreements with states and localities will enable those states and localities to implement the community-based prevention plans developed by local health departments and community groups through the HIV prevention community planning process.
States and localities must be given greater resources and the flexibility to design comprehensive strategies that include prevention education, outreach, counseling and anonymous testing, as well as continuing local surveillance and partner notification programs that are responsive to the local needs, and not be subjected to one-size fits all solutions from Washington.
Increased funding for the CDC will also enable the CDC to increase dissemination of scientific research related to risk behavior and methods to reduce HIV transmission, and to strengthen CDC's minority and youth initiatives, which are critical to the development and implementation of effective, culturally-sensitive, age-appropriate prevention strategies targeted at those communities most at risk.
CARE The Ryan White CARE Act, which provides primary medical care, AIDS drugs, viral load testing, case management and other enabling services for thousands of individuals living with HIV/AIDS, plays a vital role in ensuring access to appropriate care for Americans living with HIV/AIDS. We propose $393.9 million in increases over FY '97 for the medical, social services and training programs in the Ryan White CARE Act.
The appearance of new treatments and new hope has led to a dramatic increase in demand for primary care and support services for people living with HIV and AIDS. People are living longer and correspondingly requiring services over a longer time period. The intricate, fragile, AIDS care infrastructure that was constructed over the past 15 years to ensure basic health care for people with AIDS who had nowhere else to turn is struggling to keep pace with new demands.
While Medicaid provides health care to at least 53 percent of all adults and over 90 percent of the children living with AIDS, many low-income people living with HIV disease do not become Medicaid-eligible until they have an AIDS diagnosis. Ryan White is often the only safety net to respond to the urgent need for early intervention medical care, prescription drugs and vital enabling services. The erosion in private health insurance coverage and proposed limits on future federal Medicaid funding will only further strain the ability of Ryan White-funded programs to provide comprehensive services.
Waiting lists and impossible choices between funding life-sustaining prescription drugs, primary medical care or home health care will become more common as Ryan White providers work to deliver more services for more people without adequate resources. Ryan White Title IIIB clinics have documented a 41.1 percent increase in the number of new patients within the last year alone, and St. Vincent's Hospital in New York City saw a 30 percent increase during 1996 in new patients seeking early intervention services.
Each of the five titles of the CARE Act plays a critical role in making it the health care and social service safety net of last resort for Americans living with HIV/AIDS. Increased funding for all of the Titles of the Ryan White CARE Act is needed to ensure that the health care and support services infrastructure can continue to meet service needs and to successfully support the provision of effective medications.
For Title I, which provides emergency formula and competitive grants to those metropolitan areas most heavily affected by the HIV/AIDS epidemic, we propose a $96.1 million over FY '97. Title I funds are used to deliver outpatient medical care, substance abuse and mental health treatment, and other critical support services. Forty nine eligible metropolitan areas (EMAs) now receive Title I funds.
For Title II, which provides formula grants to the state health departments in all 50 states, the District of Columbia, and the territories, we propose a $220.6 million increase over FY '97. This request includes an increase of $130.6 million specifically to the AIDS Drugs Assistance Program and $90 million for state formula grants. Title II funds are used to provide medical care and support services, and are also used to operate HIV care consortia, fund state health insurance continuation, home-based care services, and to purchase AIDS-related drugs for low-income individuals through the AIDS Drug Assistance Program (ADAP). Title II must also shoulder an increasing health care burden associated with the fact that no new jurisdictions will become eligible for Title I funding. The number of new Title I EMAs was effectively capped by the reauthorized Ryan White CARE Act. In addition to the health care and social service demands, ADAP continues to face substantial challenges to meeting the demand for new and potentially lifesaving and life-extending drug therapies. As a result, additional funds are required specifically for ADAP so that, at least in the short term, it can continue to address this explosive growth in demand from uninsured and underinsured people with HIV/AIDS.
For Title IIIB, which provides competitive grants to existing community-based clinics and public health providers serving traditionally underserved populations, we propose a $44 million increase over FY '97. Title IIIB funds are used to deliver early intervention and ongoing comprehensive HIV/AIDS health care services, including HIV counseling and testing, primary care, and prescription drugs.
For Title IV, which provides competitive grants to pediatric, adolescent and family HIV care programs, we propose a $25 million increase over FY '97. Title IV funds are used to provide coordinated care services and access to clinical research by linking care services to clinical research programs.
For Title V, which provides competitive grants for projects of national significance and to educate and train health care providers in HIV/AIDS care through the AIDS Dental Reimbursement Program and the AIDS Education & Training Centers (AETCs), we propose a $6.7 million increase over FY '97 for the AETCs and $1.5 million increase over FY '97 for the Dental Reimbursement program. As the training arm of the CARE Act, the AETCs ensure that health care providers have access to the most up to date information and training on competent HIV/AIDS care and treatment and the HIV/AIDS Dental program helps to provide training in and access to much needed HIV dental care.
SUBSTANCE ABUSE PREVENTION AND TREATMENT Substance abuse is inextricably linked to the HIV epidemic. We cannot stem the spread of AIDS or provide care and treatment for those substance abusers who are already infected if we do not address the need for prevention and treatment for drug dependence and alcoholism. Injection drug use is associated with over one-third of all AIDS cases. But substance abuse also plays a significant role in sexual transmission of HIV since it contributes to impaired judgement and increases in high-risk sexual practices. We propose a $140 million increase over FY '97 for the Substance Abuse Prevention and Treatment Blockgrant at the Substance Abuse and Mental Health Services Administration (SAMHSA).
The Substance Abuse Prevention and Treatment Block Grant at SAMHSA is the primary funding source for public substance abuse prevention and treatment services. The goal of the block grant is to ensure that all Americans have access to appropriate drug prevention and treatment services. Alcohol and drug prevention and treatment services promote good health and reduce high risk sexual behavior. Substance abuse prevention and treatment prevent HIV disease, cost far less than HIV medical care, and drastically reduces the human suffering and cost associated with AIDS.
RESEARCH While both a cure for HIV disease and a vaccine to prevent new infections remain elusive, AIDS research has experienced significant achievements. The productive life span of Americans diagnosed with HIV has doubled since 1987 and may easily double again with the recent advances in basic research coupled with the new drugs. But we must remember that the new drugs are not a cure and we are still years from the development of an effective vaccine. To continue to make these advances, funding for overall research efforts at the National Institutes of Health must increase. We support the professional judgement recommendation of a $134.5 million increase over FY '97 in AIDS-related biomedical and behavioral research.
In the last year alone, AIDS research led to the discovery of the means by which HIV infects cells and to the approval of the protease inhibitors and the non-nucleoside reverse transcriptase inhibitors. These new drugs, when taken in combination, can lower viral load -- the amount of HIV in the blood -- to undetectable levels in many people for extended periods of time, cutting death rates significantly and greatly reducing the rates of opportunistic infections.
NIH AIDS research is also 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.
This Subcommittee and the Congress 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. 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 federal resources are effectively managed to facilitate answers to the scientific questions which hold the greatest promise. In order to accomplish this, a consolidated budget administered by the Office of AIDS Research must be maintained. It is only by continuing to support this funding mechanism that the resources devoted to AIDS research will be allocated to the most promising areas of medical and scientific exploration. Ultimately, biomedical and behavioral research will provide the critical answers for treatment and prevention of HIV infection. Without a concentrated, planned commitment to an effective research agenda, we will be unable to find new ways to prevent HIV infection, develop new treatments, a vaccine or a cure.
Our nation is at a crucial moment in the fight against AIDS. We have made incredible progress on several fronts. However, so much more remains to be done. AIDS Action Council calls upon the federal government, in partnership with communities across the country, to act quickly and assertively to ensure that the new hope touches the lives of all people affected by HIV/AIDS.
AIDS Action Council
Daniel Zingale's Statement to the Subcommittee on Labor, Health and Human Services, Education and Related Agencies House Committee on Appropriations
This article was provided by AIDS Action Council.