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| 1. Support and Improvement of the Ryan White CARE Act The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is the largest source of federal funding solely focused on domestic HIV care, treatment, and medical support services. Adopted by Congress in 1990, it is reauthorized every five years and funded through annual appropriations; Congress must reauthorize the CARE Act by September 30, 2005, when the current authorization is scheduled to expire. The CARE Act has been successful in providing medical care and support services to people living with HIV who are uninsured or underinsured. In fact, the CARE Act has become the foundation of service delivery for HIV care in the United States. Since the first authorization of the CARE Act, and through the ensuing rapid development of its programs, AIDS Action has expressed concerns about gaps in service delivery, large populations not linked to medical care, and insufficient funding. The CARE Act must modernize and streamline its services to ensure that the current public health infrastructure is meeting the needs of people living with HIV. AIDS Action seeks to ensure the stability of funding for the Ryan White CARE Act, avoid the destabilization of existing HIV systems of care, ensure the fair distribution of resources, and address the “unmet need” of this epidemic which, as defined by Congress in 2000, means connecting HIV positive individuals not currently in care to appropriate health care systems. AIDS Action will work with its members, Congress, the Administration, and coalition partners to support the reauthorization, expansion, and full funding of the Ryan White CARE Act.
Access to early medical care and treatment for HIV remains elusive for many people in the U.S., including those who have low income and are either underinsured or uninsured. Currently available HIV treatments are expensive, effective only for some, and associated with debilitating side effects. According to the Centers for Disease Control and Prevention, today nearly one million people are living with HIV in the United States – roughly half of whom (500,000) are without access to regular medical care. Barriers in accessing quality HIV care result in disparities in health outcomes, which are most often experienced by people with low incomes, women, minority populations, and LGBT populations. Access to HIV care means ensuring that everyone living with HIV is able to get the health care services they need, regardless of income or ability to pay. Federal programs such as Medicare, Medicaid, the Ryan White CARE Act, Veteran’s Health services, and the Community Health Centers provide a critical safety net for those who are most in need. The quality of HIV care that an individual receives is key in determining their health outcomes and, moreover, it reflects our ability to design and implement an effective public health response to the epidemic. Therefore, advocates must ensure that the Public Health Service guidelines for care and treatment of HIV become the minimum standard of care for all people living with HIV. This will help ensure that people living with HIV get the highest quality of care and thus enjoy the best health outcomes possible. As HIV disease progresses, treating it becomes more complicated. Over time, HIV can be compounded by resistance to anti-retroviral drugs as well as by life-threatening infections and conditions that must be accurately diagnosed and quickly treated. In addition, HIV infection is often accompanied by co-occurring conditions that require medical support services such as substance abuse, mental health, and nutrition services. It is essential for all people living with HIV to have access to qualified and experienced HIV health care providers who have been trained by knowledgeable HIV specialists and thus can successfully address the complex needs of their HIV positive patients. AIDS Action will work with its members, Congress, the administration, and coalition partners to support access to quality care for all people living with HIV.
Current treatment for HIV infection is based on the utilization of anti-retroviral therapies and other medications to treat opportunistic infections. Access to these medications must be assured for all HIV positive people to improve overall health outcomes and quality of life. While certain private insurance programs cover HIV related medications, many people living with HIV are uninsured or underinsured; thus severe limitations exist in accessing life-prolonging medications. To establish an emergency safety net providing access to medications, the federal government created the AIDS Drug Assistance Program (ADAP) under the Ryan White CARE Act and, under Medicaid, allows states to provide optional prescription drug benefits. Additionally, Congress has authorized a new Medicare prescription drug benefit which will be implemented in 2006. Nevertheless, ADAP is facing a budget crisis, Medicaid requires an AIDS defining diagnosis before access can be granted, and it is still unclear whether the new Medicare benefit will offer adequate drug coverage to beneficiaries living with HIV. AIDS Action seeks to ensure that each of these systems works toward regional and state consistency, enhanced standards of care, portability, and the adoption of a consistent drug formulary with increased availability of its medications. The drug formulary must, at a minimum, contain all FDA-approved antiretroviral therapeutics, all FDA-approved prophylaxes and therapeutics for opportunistic infections (such as Hepatitis C and tuberculosis), and all medications to treat side effects, mental health and alcohol and other drug disorders associated with HIV. AIDS Action will work with its members, Congress, the Administration, coalition partners, and the private sector to support access to life saving medication for all people living with HIV. 4. Improved Surveillance
Systems through Reporting and Notification HIV positive people who are in care are living longer without receiving a clinical AIDS diagnosis; therefore, an epidemiological surveillance based on AIDS cases alone no longer provides an accurate reflection of the epidemic. In the amendments of the Ryan White CARE Act Reauthorization of 2000, Congress directed the U.S. Department of Health and Human Services to examine whether HIV reporting and surveillance, as opposed to AIDS diagnoses reporting alone, could be used to restructure the CARE Act’s funding formulas by 2007. In 2004, former Secretary Tommy Thompson said that variations in state HIV surveillance systems at that time prevented the utilization of state reported HIV data to determine funding allocations. The 2007 Congressional goal was however within reach, he added. As of January 2004, all states have implemented HIV surveillance systems that report HIV positive test results using names or other unique identifiers; however, HIV surveillance systems must be standardized across the nation in order for their usefulness to be fully realized. The United States will never have a true picture of the HIV epidemic without accurate and uniform HIV surveillance from every state and territory in the country. Further, reliable data on HIV infection would facilitate rapid response and long-term planning by local, state, and federal bodies to inform HIV prevention and care efforts. AIDS Action will work with its members, Congress, the administration, and coalition partners to support the development of a uniform HIV surveillance system that accurately reflects the U.S. epidemic. 5. Improved Testing and Counseling Everyone needs to know their HIV serostatus in order to make decisions about their health care and behaviors; such informed decisions could decrease the number of new infections. Yet, according to the Centers for Disease Control and Prevention, between 180,000 and 280,000 people in the United States are HIV positive and do not know it — approximately one-third of those living with the virus in the United States. There are multiple and complex reasons why people do not learn their HIV status. Many people are unaware of their risk and see no need for testing. Testing programs may have locations, hours, or costs that make them inconvenient or inaccessible. Further, not all health care providers are equipped or prepared to offer counseling and testing services. Fear and concerns about privacy, stigma, and discrimination are still significant obstacles to testing. Additionally, when rapid HIV tests are not used, the waiting period between the time of testing and receiving the results discourages many people from returning. Advances in testing, most importantly the approval of rapid HIV tests by the Food and Drug Administration (FDA), provide an opportunity to receive fast, accurate results and expand testing availability. Testing providers should use rapid HIV tests whenever possible. Also, HIV testing and counseling should be bundled with testing for other sexually transmitted diseases. AIDS Action will work with its members, coalition partners, and the Administration to support improved voluntary testing and counseling programs that encourage all individuals to know their HIV status.
There is no cure for HIV infection, yet HIV transmission is 100 percent preventable. Understanding and adhering to effective prevention strategies is the only way to avoid risk for HIV infection. Factual, culturally relevant, and comprehensive health information is essential to the development of effective HIV prevention strategies. Further, it is essential that the focus of HIV prevention messages be on health education and risk reduction for HIV negative and HIV positive people. HIV prevention messages are most useful when integrated into broader health promotion efforts such as those found in educational institutions, correctional facilities, or as a part of substance abuse and mental health treatment. The U.S. government does not mandate a systematic, population-wide education program to teach children and adults about HIV transmission and how to avoid risks for infection. This lack of information has had serious consequences, even for our youngest citizens. At least 50 percent of new infections in the United States occur among young people under the age of 25. AIDS Action will work with its members, Congress, the Administration, and coalition partners to advocate for factual, comprehensive, culturally relevant, and scientifically evaluated prevention models to be developed and implemented across the United States.
A revolution in the science and knowledge of the human immunodeficiency virus (HIV), has led to a greater understanding of the evolution of HIV infection, how clinical management affects patients. Although HIV continues to be a life threatening infectious disease and an ongoing public health emergency, the development of anti-retroviral medications has meant that many people with HIV are living longer, and thus requiring access to more treatment and medical support services. For these individuals, HIV is increasingly being managed as a chronic infection. Scientists and researchers must continue to examine new questions and challenges faced by people living with HIV. Research initiatives must explore viral mutations and drug resistance, adherence and treatment interruption, the side effects and chronic illnesses caused by long-term use of anti-retrovirals, primary infection and transmission risk, and body mass and physiological changes. Scientists must also continue to research how best to provide effective long-term HIV care as the human body ages. AIDS Action will work with its members, Congress, the Administration, coalition partners, and the private sector, to support the expansion of research efforts dedicated to examining these and other long-term health issues and the related needs of people living with HIV. 8. Support for HIV Science and Research Since the beginning of the HIV epidemic over twenty years ago, the United States has been a leader in support for HIV related science and research. Scientists at the National Institutes of Health (NIH) and other federally funded research sites have been responsible for countless lifesaving breakthroughs that have enabled people living with HIV to live longer, healthier, and more satisfying lives. In addition, HIV research has led to breakthroughs in the care and treatment of other life-threatening medical conditions. Unfortunately, as knowledge about the HIV virus has grown, so has the need for further study. Today, there are 26 anti-retroviral drugs approved for the treatment of HIV by the U.S. Food and Drug Administration (FDA); however, the growing challenges of drug resistance and debilitating side effects have meant that people living with HIV are severely limited in their choice of medications. Therefore it is critical that researchers continue to develop new treatment options. Increased understanding about the nature of the virus has also led to a growing understanding of the importance of preventing HIV infection. HIV vaccine research and clinical trials have not yet led to the development of a vaccine, but they have increased the HIV knowledge base and must therefore continue. Research into the development and use of a possible microbicide is vital in an era where half of all new infections are occurring in women, while behavioral research is helping scientists to develop interventions that will better equip individuals to avoid infection. In order to be most effective, clinical trials (for vaccines, microbicides, and new treatments and therapies) must include a representative sample of those who are currently most impacted by HIV, including women and people of color. Finally, HIV related research must be based in sound science—and its objectivity must be protected from political ideology. AIDS Action will work with its members, Congress, the administration, coalition partners, and the private sector to support the continuation and expansion of sound HIV science and research. [back to introduction] |