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Above left:
Senator Orrin Hatch (R-UT) (left) confers with fellow Senator Ted Kennedy (D-MA). Their collaboration helped create broad bipartisan support leading to passage in 1990 of the Ryan White CARE Act.

Above right:
Elizabeth Taylor is shown testifying before Congress in 1986. She and other celebrities helped draw media attention to and build public support for the CARE Act.

Elizabeth Glaser founded the Pediatric AIDS Foundation and remained a life-long advocate for prevention of mother-to-child transmission of HIV and treatment of infected children. Her efforts helped engineer the inclusion of pediatric and maternal health provisions in the CARE Act of 1990.

In a floor statement earlier in the year discussing Medicaid’s requirements that a person be fully disabled with AIDS before qualifying, Representative Henry Waxman (D-CA), the bill’s author, said, “With such limitations, the Medicaid program serves poor HIV and AIDS patients badly, requiring them to get sick almost to the point of no return before assisting them with their health care. Similarly, the program serves hospitals badly by crowding them with AIDS patients whose pneumonia and other illnesses might have been prevented if early intervention had been provided.”6

Medicaid coverage for people with HIV was a top priority for Representative Waxman, who had convened a hearing on the subject in February. But the provisions would not stay in the later versions of the bill. Although Representative Waxman sat on the House Energy and Commerce Committee, which had jurisdiction over the Social Security Act, including Medicaid provisions, all the interest and action on the Senate side was in the Committee on Labor and Human Resources under Senator Kennedy’s leadership. The committee had no jurisdiction over the Social Security Act—that authority lay with the Senate Finance Committee, which had shown no interest in addressing the issue.7

The House bill’s early intervention provision morphed through several iterations and became Title III (now Part C) of the final legislation, authorizing grants to States and directly to health care agencies to provide HIV testing, counseling, and early intervention services. To encourage people to seek testing and care, the section included confidentiality protections and made specific allowances for anonymous testing.

The Senate Seeks Relief for Hard-Hit Urban Areas

The Senate bill’s original title, the Comprehensive AIDS Resources Emergency (CARE) Act, reflected the driving force behind the legislation to provide disaster assistance to urban epicenters. Title I (now Part A) of the original and final legislation provided support directly to cities for outpatient and ambulatory health and support services. The provision was modeled on the Robert Wood Johnson Foundation's AIDS Health Services Program and HRSA's AIDS Service Demonstration Grants which created specialized comprehensive health and supportive services for people with HIV and AIDS. From the very beginning, both the Senate and the House bills provided for significant local authority over how funds would be spent by creating local HIV health services Planning Councils in each funded jurisdiction.

At its initial introduction, the Senate bill also included a funding stream to support services in all States and territories (Title II, now called Part B). The provisions, which were not in the House bill, were a key priority for the committee’s ranking Republican member, Senator Orrin Hatch (R-UT), who was a vocal and steadfast supporter of the bill.4

Maternal and Child Health Also Garner Early Support

Title IV (now called Part D), conversely, evolved over the course of the House deliberations. Ultimately, it authorized demonstration grants to conduct clinical research on therapies for children and pregnant women with HIV and to provide health care, case management, and support services for these patients and their families.

The Pediatric AIDS Demonstration Program started in 1988 in HRSA’s Maternal and Child Health Bureau. Its inclusion in the bill was largely the result of the efforts of Elizabeth Glaser, founder of the Pediatric AIDS Foundation.7 At the suggestion of Representative Waxman’s staff, Glaser, a vocal advocate for greater investment in research on therapies for preventing mother-to-child transmission of HIV and treating infected children, had enlisted the support of Representative Norman Lent (R-NY), a key Republican on the Energy and Commerce Committee, to build stronger bipartisan support for the bill. Lent became an advocate for the bill and took the lead on the pediatric provisions during the House debate.8 Although the program was included in the final legislation, Congress did not transfer the funding for the program into Title IV until FY 1994.9

The legislation also authorized programs for testing to identify HIV-infected State prison inmates and established a procedure under which local firefighters and paramedics could find out whether they were exposed to HIV in the course of their work.

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