"AIDS has taken too many friends and relatives and loved ones from everyone of us in this room. It has shaken the faith of many, but it has inspired a remarkable community spirit."
President Clinton, May 20, 1996
Signing of the Ryan White
CARE Act Reauthorization
Since the epidemic of HIV and AIDS began in 1981, more than 500,000 Americans have been diagnosed with AIDS and required care. As the number of Americans living with AIDS increased, the demands on the U.S. health care system increased dramatically, but Federal, State, and local governments along with community-based organizations and private clinicians have responded with compassionate, high-quality medical care. In 1986, Federal expenditures for HIV-related care and services were $193 million, by 1996 the Federal share reached $3.8 billion.
In the early years of the epidemic, the health care infrastructure was particularly unprepared to accommodate the health care needs of persons with HIV. To meet their complex health care needs, HIV-positive persons were often forced to negotiate a fragmented system of care. There were few programs designed to meet the unique care needs of HIV-positive individuals. Moreover, available care services were often directed towards meeting the acute care needs of persons diagnosed with AIDS, rather than intervening in the early stages of HIV disease. While we still have far to go, the quality and availability of services for HIV-positive persons have improved significantly.
People living with HIV now access and finance health care services in a variety of ways. Currently, approximately 50 percent of adult Americans and 90 percent of children living with AIDS receive their medical coverage through the Medicaid program and another 5 percent receive Medicare benefits. An estimated 15 percent of people living with AIDS have private health insurance and the remaining 30 percent are uninsured and must rely on personal payment or charity care.
Enactment of the Health Insurance Portability and Accountability Act of 1996 provides important new protections for people living with chronic conditions including HIV/AIDS. It guarantees that individuals with insurance can take that coverage from job to job without being excluded because of a pre-existing medical condition. It eliminates the discriminatory tax treatment of health insurance for the self-employed and it requires insurance companies to sell coverage to any employer who seeks it without regard to the health status of any workers.
In addition to Medicaid, the centerpiece of the national safety net for HIV-positive people is the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990, administered by the Health Resources and Services Administration (HRSA). The CARE Act programs were established to fill gaps in coverage and build systems of care to create access to health care for people living with HIV and AIDS. The various titles of the CARE Act support direct services for people living with HIV:
HRSA also provides primary care to persons living with HIV through its Community Health Centers and Maternal and Child Health Block Grant programs. Other sources of primary care supported by the Federal government include the Department of Defense, the Department of Veterans Affairs, and the Indian Health Service (IHS), which provides health care for HIV-positive Native Americans and Alaska Natives. Additionally, the Bureau of Prisons within the Department of Justice provides care for HIV-positive people in Federal prisons.
People living with HIV and their families face significant obstacles in locating affordable housing. Housing assistance for people living with HIV and AIDS is provided by the Department of Housing and Urban Development (HUD) through Housing Opportunities for Persons with AIDS (HOPWA), enacted in 1990, and other programs, such as the Section 811 Supportive Housing Programs for Persons with Disabilities, the McKinney Homelessness Assistance Grants, and the Section 8 Rental Assistance Program. These programs work in partnership with local initiatives incorporating housing assistance into a community's continuum of services.
To further foster community involvement, HUD also has established the Consolidated Planning process for communities that receive funds under the Department's economic and community development programs, including recipients of HOPWA formula allocations. The Community Development Block Grant (CDBG), the HOME affordable housing program, as well as public housing programs are key resources that are available to communities.
Since he took office in 1993, President Clinton has built on this record by making AIDS a top priority and increasing the national commitment by:
The national goal in this area is to ensure that people living with HIV have the opportunity to live productive lives by having access to services that are affordable, of high quality, and responsive to their needs. AIDS care and service programs must continue to provide access to care for those without insurance coverage, improve prioritization and accountability, and increase the cost-effectiveness of services they provide. As treatments improve and extend the productive lives of people with HIV, we must continually reexamine the range of services that are needed.
Two major challenges exist in meeting this goal:
Making an Investment in Care and Services a Priority
Preserving Medicaid and Medicare
As the epidemic continues to spread in lower-income communities, Medicaid will be an even more essential lifeline of support for Americans living with HIV and AIDS. Many people are impoverished by the costs of medical care for HIV disease. The need to maintain the historic Federal-State partnership on Medicaid has never been greater.
Proposals in Congress to convert Medicaid into a block grant would endanger access to care for people living with HIV and AIDS, particularly proposals to eliminate or weaken the Federal guarantee of coverage for people living with disabilities. The President has vetoed one such proposal and has made sustaining the entitlement to Medicaid central to the national goal of ensuring appropriate and affordable care and services for persons living with HIV and AIDS.
Medicare is also becoming an increasingly important source of health care coverage for people living with HIV/AIDS. Individuals who receive Social Security Disability Insurance (SSDI) benefits for 29 months, including a 5 month waiting period, are eligible to receive Medicare benefits. As the life expectancy of people living with AIDS has increased, a greater number of those individuals have begun to qualify for Medicare.
While this provides an important additional source of benefits, there are limitations on benefits -- in particular, the absence of prescription drug coverage -- that may be problematic for persons living with AIDS. Supplementary medical coverage, known as Medigap insurance, is often difficult for a person living with AIDS to obtain. The Administration is exploring options to make Medigap policies more accessible.
|Assessing Social Security Administration Programs||
With the improved quality of life realized by many people due to the advent of protease inhibitors and combination therapy, it is important to assess programs such as Supplemental Security Income and Social Security Disability Insurance regarding their flexibility in meeting the needs of individuals as they seek to move off and on to disability.
The current system of disability programs, which assures continued access to health insurance, often places obstacles in the way of individuals who want to return to work. The Administration is exploring mechanisms to ensure that Federal programs support people with disabilities who want to work or return to work.
Support for the Ryan White CARE Act
The five-year reauthorization of the CARE Act signed by President Clinton on May 20, 1996 provides people living with HIV and AIDS with peace of mind that support from the Federal government will continue. These grants received $996 million in FY 1997.
Finally, maintaining consistent funding for the housing component of the services safety net will continue to be a national priority. Without stable housing a person living with HIV has diminished access to care and services and a diminished opportunity to live a productive life. It is estimated that up to 50 percent of people living with HIV and AIDS are or will be at risk of becoming homeless during the course of their illness. The President's FY 1997 amended budget request of $196 million for HOPWA was enacted.
|Assuring Effective Use of Limited Resources||
The three primary ways the Federal government will work to make the most of its limited resources are by: (1) improving coordination among Federal programs, (2) improving the quality of care provided by those programs, and (3) evaluating program effectiveness to ensure that funds are well spent.
|Improving Program Coordination||
Integrating HIV-related services is an important step in assisting communities to build seamless systems of support for the most vulnerable persons in our communities. Organizations receiving Federal funding to provide AIDS-related care often require support from several Federal agencies. For example, creating a comprehensive community-based program that integrates primary care, substance abuse treatment and prevention, sexually transmitted disease screening, TB prevention and treatment, HIV prevention, access to clinical trials, and housing assistance requires separate applications to SAMHSA, HRSA, CDC, NIH, and HUD.
The Agencies funding HIV-related services are committed to simplifying and improving the application process for Federal funding and to facilitating service integration. HRSA and SAMHSA have issued joint program announcements, and HUD and HRSA have issued a joint program announcement for the Special Projects of National Significance (SPNS) program. These concerted efforts to improve integration will be continued and expanded, with special attention to linking HIV and substance abuse prevention and services.
Improving collaborative efforts with the private sector is yet another opportunity for strengthening the effectiveness of current public-private partnerships and developing new ones. Combining resources and innovation makes more efficient use of scarce public and private resources. We must work to strengthen existing partnerships and seek innovative approaches for developing new collaborations.
Quality of Care
Federally-supported efforts such as Medicaid, Medicare, Ryan White CARE Act programs and the health care delivery systems at the Department of Veterans Affairs (VA) and the Department of Defense (DOD) can and should consistently provide high-quality care. Ensuring consistency in care delivery requires increased training for health care professionals and greater accountability through the use of performance measures for quality care. It may also require enhanced technical assistance to CARE Act grantees, planning councils, and consortia.
Having access to quality care within the context of managed care is an important emerging issue for all Americans including those living with HIV. The President has established the Advisory Commission on Consumer Protection and Quality in the Health Care Industry to examine changes in the industry and make recommendations.
It is also essential that practical information on research advances for practicing clinicians and their patients be provided in a timely manner. (See Section on Translation of Research Advances into Practice.) HRSA and HCFA will continue to offer guidance to grantees and the States in regards to maintaining the quality and standard of care appropriate for people living with HIV. To this end, during FY 1997, the Office of HIV/AIDS Policy at HHS is undertaking a program to develop clinical practice guidelines in conjunction with other government Agencies such as the NIH, VA, and DOD and private-sector clinicians.
|Evaluating Program Effectiveness||
Strong Federal support for safety net programs must be accompanied by improved accountability and priority setting. Evaluating current activities provides valuable information for planners and those on the front lines of the epidemic and assists in providing better care to people living with HIV.
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