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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act
or a specific opportunistic infection and represents the advanced stage of HIV disease (CDC, 1992; Pantaleo et al., 1993; Fauci et al., 1996).
Recent advances in treatment of HIV disease have resulted in slowing the progression of the disease, and often temporary restoration of immune functioning, in infected individuals. Early detection of HIV infection, before the infected person develops AIDS, can allow the individual to enter care and thus receive treatment and preventive services that could limit the spread of infection and prevent the morbidity and mortality of AIDS.
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, enacted in 1990 and reauthorized and amended in 1996 and 2000, provides funding to cities, states, and other public and private entities to provide care and support services to individuals with HIV and AIDS who have low incomes and little or no insurance (Ryan White CARE Act. 42 U.S.C. § 300ff ). The CARE Act was named after Ryan White, a teenager from Indiana whose struggle with HIV/AIDS and AIDS-related discrimination helped raise awareness of the disease. The CARE Act is a discretionary program that relies on annual appropriations from Congress. Since its original authorization, CARE Act funding has increased from $220 million in fiscal year (FY) 1991 to $2.0 billion in FY2003 (HRSA, 2003). The Health Resources and Services Administration’s HIV/AIDS Bureau (HRSA/HAB) has lead responsibility for implementation of the CARE Act.
The CARE Act is composed of four major program titles and several other components. Title I provides grants to Eligible Metropolitan Areas (EMAs—currently 51) that have been disproportionately affected by the HIV/AIDS epidemic (HRSA, 2002a). Title II provides grants to U.S. states and territories to improve the quality, availability, and delivery of health care and support services for individuals with HIV disease, and provides access to medications through the AIDS Drug Assistance Program (ADAP) (HRSA, 2002b). Title III provides direct grants to nonprofit entities for primary care and early intervention services, and capacity building and planning grants (HRSA, 2002c). Title IV provides grants for family-centered care for infants, children, youth, and women living with HIV disease and their families (HRSA, 2002d). Other components of the CARE Act include the AIDS Education Training Centers, the Dental Reimbursement Program, and the Special Projects of National Significance.
The CARE Act operates against a backdrop of significant inequalities in access to health care in the United States. More than 43 million Americans are uninsured (Mills and Bandhari, 2003), and millions more hold insurance policies that do not cover basic medications or treatments (IOM,