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Ryan White’s physician listens to his lungs as his mother, Jeanne White-Ginder, looks on, 6 months before the Act bearing his name became law. “Because of a misunderstood disease, my life changed overnight,” White-Ginder has said of this time.

Enactment

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Communities and the Media Step up Pressure for Passage

Support for passage was broad, but it did not come without a struggle, especially when the bills came to the floor. A few members opposed increasing the Federal investment in HIV/AIDS, arguing that other diseases affected more people and at greater cost to the Nation.1 Most of the debate, however, focused on hot-button topics—-partner notification, blood donation, and providing bleach to drug users to clean their needles. The final amendments passed were largely compromises written or supported by the bills’ authors.1,10

Much of the action happened on the Senate and House floors, but tremendous efforts were also made to mobilize community and media support. The National Organizations Responding to AIDS, a coalition convened by the AIDS Action Council, worked to sign on co-sponsors, reach out to the media, and bring activists to Washington, DC. Among the results of those efforts were editorials favoring legislation and a sit-in in the Senate gallery urging swift action on the bill.4

After the bill’s passage in the House, the two chambers held a conference to work out the differences in the two bills. That final version was approved by both chambers in early August.

During the House debate on the legislation, the White House stated its opposition to the bill and said, “The bill’s narrow approach, dealing with a specific disease, sets a dangerous precedent, inviting treatment of other diseases through similar arrangements.”11 On August 18, however, President George H.W. Bush, aware that there were more than enough votes in each house of Congress to override any veto, signed the bill into law.

Early Compromises Lay the Foundation for Broad-Based Response

As passed and signed, the new law created a hybrid program reflecting the priorities of key players in each chamber. Money would flow directly to urban centers, States, and care providers. Communities would have significant control over local spending, and funds would support the community-based systems built over the past decade. Provisions to help get people tested and into care earlier in their disease were included.

First Year Spending 1991
View the data
Ryan White CARE Act Spending, FY 1991
CARE Act Funding
Title I cities $87,831,000
Title II for States $386,748,000
Title III for early intervention services $44,891,000
Total (rounded) $519,140,000

The final legislation also meant that much HIV/AIDS care would depend on annual appropriations levels, because there would be no Medicaid coverage for people living with HIV until their disease progressed to a diagnosis of debilitating AIDS. That structure would have profound implications as new and much more expensive therapies were developed for use early in the disease process.

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