Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act
About the Ryan White CARE Act
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is the largest federal discretionary program dedicated to providing care and treatment to people living with HIV/AIDS. Reaching more than 533,000 people annually, the CARE Act provides a lifeline for people living with HIV/AIDS by saving lives and improving quality of life. The CARE Act provides medical care, pharmaceuticals, and a variety of support services such as childcare, transportation, housing, mental health services, and case management. The CARE Act has been greatly successful in reducing HIV/AIDS morbidity and mortality and is an integral part of the service structure for people living with HIV/AIDS.
First enacted in 1990 and reauthorized in 1996 and 2000, CARE Act programs provide services to people living with HIV/AIDS who are uninsured or underinsured. By law, the CARE Act is a payer of last resort, thereby maximally leveraging other public and private resources in the provision of health care to low-income people with HIV/AIDS.
Consumers who receive CARE Act services tend to be poorer than other HIV-positive people who do not use the program, and in some programs under the CARE Act, more than 70 percent of clients live below the federal poverty level.1 More than 50 percent of CARE Act consumers have annual incomes below $25,000.2 Because the CARE Act serves as the payer of last resort, it fills critical service gaps left un-funded by Medicaid, Medicare or private insurance.
The CARE Act expires on Sep. 30, 2005, and broad support exists for its reauthorization. President Bush has publicly called for the law's renewal, and congressional leaders of both parties are actively engaged in developing policy and legislative proposals to reauthorize the CARE Act on time. The Ryan White CARE Act has always enjoyed broad bipartisan support. Its original sponsors were Senators Edward M. Kennedy (D-Mass.) and Orrin Hatch (R-Utah). The CARE Act has been passed and reauthorized with vote totals of 95-4 and 97-3 in the Senate, and 408-14, 402-4, and 411-0 in the House.
AIDS Alliance for Children, Youth & Families supports speedy CARE Act reauthorization and looks forward to working with the Congress and Administration on this important legislation.
AIDS Alliance for Children, Youth & Families is the only national non-profit organization dedicated solely to women, children, youth, and families affected by and at risk for HIV/AIDS. Based in Washington, D.C., AIDS Alliance is a national training, education, and advocacy organization. Our provider members include over 650 community-based organizations that serve more than 53,000 women, children, youth, and families affected by HIV/AIDS each year. Many of our members are funded under Title IV of the Ryan White CARE Act.
Since our founding in 1994, AIDS Alliance's board of directors and members have been at the forefront of providing comprehensive, family-centered care to women, male caregivers, children, and youth affected by HIV/AIDS. Indeed, even before Title IV was established in the 1996 reauthorization of the CARE Act, our members were national leaders in developing care models to reach these constituencies and provided guidance to HRSA and Congress on the development of the Title IV program. AIDS Alliance was active in both the 1996 and 2000 reauthorizations of the CARE Act and is well-suited to provide expertise on policy related to Title IV and other CARE Act issues affecting women, children, youth, and families affected by HIV/AIDS.
The Ryan White CARE Act has been enormously successful in meeting its mission to provide life-extending care and services. Because of advancements in care and treatment, the death rate from AIDS has been reduced by as much as 80 percent, and many years are being added to life expectancy for people living with HIV/AIDS.3
For many low-income people with HIV/AIDS these crucial services can only be accessed through the Ryan White CARE Act. If individuals have assets above the state's eligibility level for Medicaid, and are not yet eligible due to disability status, then they may find themselves without private health insurance and without Medicaid. Further, even if they do have public or private insurance, frequently the costs of medical care, anti-AIDS medications, and necessary support services exceed insurance coverage or are not reimbursable. These individuals desperately need continued access to medical and support services -- their very lives depend on it.
Though we have made significant progress in decreasing HIV-related morbidity and mortality, much more work remains to be done. Poverty, unequal access to care, stigma, and discrimination have prevented women and people of color with HIV/AIDS from achieving the same reductions in illness and death as have other populations.4 Further, both women and people of color have been underrepresented in clinical trials of anti-AIDS drugs, so drug efficacy and side effects specific to these populations may not be as well understood. The people at the intersection of these two communities -- women of color -- have been especially disproportionately affected by HIV/AIDS.
Solving these problems is the mission of Title IV programs. By developing medical care and support services especially designed to reach women, children, youth, and families, Title IV grantees have been very successful in bringing these communities affected by HIV/AIDS into care and responding to health care disparities. The vast majority of Title IV consumers are women, and Title IV serves the largest percentage of people of color of any title in the CARE Act. Title IV is working to promote positive health outcomes among women and people of color affected by HIV/AIDS by developing a comprehensive system of care specifically tailored to the needs of these communities, including support and assistance for clinical trial enrollment.
These systems of care require additional support. The CARE Act must be reauthorized on time and with policies that promote effective care and treatment. The reauthorization must acknowledge the difficulty of developing a care network and providing the comprehensive services women, children, youth, and families need. Care and treatment for people living with HIV/AIDS are becoming more complicated. Finding the right treatment regimen is a complex process, and drug resistance and treatment failure can occur over time. Furthermore, though significantly extending people's lives has been a great accomplishment, it has also required addressing other health problems that can arise, independent of HIV infection. Ensuring that all people affected by HIV/AIDS share in the gains made so far in fighting the disease and expanding services to further reduce HIV-related illness, suffering, and death must be the goal of the 2005 reauthorization of the Ryan White CARE Act.
This article was provided by AIDS Alliance for Children, Youth and Families. It is a part of the publication Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act.