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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White
Among minorities, who are disproportionately affected by the epidemic, the disease was ranked as the top national health concern.
In this context of changing demographics, improved treatment options, and continued widespread public concern, Congress passed the 2000 reauthorization of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act (CARE Act). The issues before legislators as they contemplated the future of the federal response to the HIV/AIDS epidemic included equitable resource allocation, reliable disease surveillance, and disparities in access to care and life-saving medications for the poor and uninsured. In the text of the reauthorization, the Institute of Medicine was charged to form two expert Committees to look at the future of the federal response to the HIV/AIDS epidemic. The two Committees—the Committee on Public Financing and Delivery of HIV Care and the Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning and Evaluation—were intended to work independently but in parallel and to release their findings within months of one another. One report, from the Committee on the Ryan White CARE Act, addresses several specific questions raised by Congress about the current allocation formulas, the determination of resource needs in different jurisdictions, and the assessment of care quality. Although it addresses some long-range issues, it is intended to provide guidance on issues currently faced by Congress, the Health Resources and Services Administration (HRSA), and grantees in the administration of the CARE Act. This report, from the Committee on Public Financing and Delivery of HIV Care, is intended to provide a vision of the HIV care system necessary to meet the challenges of the third decade of the AIDS epidemic and beyond.
THE RYAN WHITE CARE ACT
Ryan White died 4 months before the legislation that bears his name was signed into law. The teenager, who had contracted the virus through blood products used to treat his hemophilia, had become the face of the epidemic for the nation in 1985, when he began his successful fight to be allowed to attend school with his classmates in Indiana. He had been ostracized, bullied, and threatened because he was infected with HIV, and his struggle to restore dignity to those living with the disease touched the nation (Johnson, 1990; GPO, 2000).
The CARE Act (see Box 1-1) bears the following stated purpose:
[T]o provide emergency assistance to localities that are disproportionately affected by the Human Immunodeficiency Virus epidemic and to make financial assistance available to States and other public or private non-profit entities to provide for the development, organization, coordination