“While we pay tribute to those who have died—only some of whose names we know—we should adopt this legislation in honor of, and with hope for, those people who are now living with AIDS and HIV.”

— Rep. Henry Waxman (D-CA), August 3, 1990


Between FY 1990 and FY 1991, HRSA spending on HIV/AIDS increased more than 13-fold, from $16.5 million for AIDS Service Demonstration Grants, to $220.6 million for the Ryan White CARE Act as a whole.

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Between 1996, ADAP’s first year, and reauthorization in 2000, program funding increased from $52 million to $528 million. Funding rose another 50 percent in 2006 in a continued commitment to reach all the underserved. In the 2009 reauthorization, funding levels hit an all-time high.

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In 1991, the first year of the Ryan White HIV/AIDS Program, the Federal budget appropriation was $220.6 million. Today it has grown to more than $2 billion.

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Since 1990, grants under the Ryan White CARE Act have been administered by the Health Resources and Services Administration (HRSA). The HIV/AIDS Bureau was created under HRSA in 1997 to streamline the administration of all Ryan White funds.

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Capitol Hill Moves to Pass Landmark Legislation

On the morning of May 16, 1990, as the Senate prepared to debate S. 2240, the Senate Chaplain, Reverend Richard C. Halverson, DD, noted in his morning prayer that “rarely will the Senate be called upon to deal with an issue more complicated by prejudice, fear, and emotion, nor more presently or potentially destructive, than the issue of AIDS.” 1

Debates on procedural matters during the previous two days highlighted the intensity of emotions on the issue. Despite the tenor of the debate, even the bill’s strongest opponent, Senator Jesse Helms of North Carolina, in speaking against the bill the day before, noted that “Yes, this bill will pass, no question about it.” 2

Bipartisan Support

The bill passed the Senate by a large margin of 95 to 4, the result of successful efforts to build strong bipartisan support over the preceding weeks and months, and the strategy of creating legislation that provided resources to every state. The bill came to the floor with 66 co-sponsors, more than enough to block a filibuster attempt by Senator Helms.

A Tribute to Courage

Just the day before, the Senate had also voted to name the bill in honor of Ryan White, an Indiana teen who had died of AIDS only five weeks earlier, on April 8, 1990. Ryan White’s fight to go to school after his AIDS diagnosis gained him national and international attention. His grace and positive outlook throughout his struggle made him a hero.

When describing Ryan White on the Senate floor, Senator Edward Kennedy (D-MA), the bill’s lead author, said, “One thing that was extraordinary, and there are many things about this remarkable young man, was after he received that tainted blood transfusion, to the moment he drew his last breath here on Earth, he never condemned anyone. He was not looking for the scapegoats. . . What he was doing was reaching out in the true spirit of the American character to recognize that there were people who were suffering.” 3

Just two weeks after Ryan’s death, his mother Jeanne White had come to Capitol Hill to recruit Senate co-sponsors for and urge the passage of the bill that was to be named in honor of her son. 4 Jeanne White’s involvement drew media attention and helped generate broad support for the legislation, and her involvement was the public face of a much larger effort to strengthen the Federal response to AIDS as the epidemic neared the end of its first decade.

Hope and Despair on the Frontlines of the Epidemic

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act came to life at a time of despair and hope among those who were on the frontlines of the epidemic. Urban hospitals were overcrowded, and community-based models of care were collapsing under the weight of increasing caseloads and diminishing resources. With the advent of meaningful treatments—AZT (zidovudine) to fight the virus and aerosolized pentamidine to prevent Pneumocystis carinii pneumonia (PCP)—there was hope that change was in sight.

That hope was tempered by the lack of resources to provide care and treatment. In January 1990, a task force of the House Budget Committee held field hearings in Los Angeles and San Francisco. The witness testimony and statements of House members gave voice to both the possibilities and the frustration.

Barbara Boxer

“We know there is hope. It seems to me we have a moral obligation to act on what we know and proceed toward early intervention.”

—Then-Rep. Barbara Boxer (D-CA)

The Drumbeat for Early Intervention

Then-Representative Barbara Boxer (D-CA), calling for the Federal government to ramp up its commitment to providing care to people in need, said, “We invested millions. We know there is hope. It seems to me we have a moral obligation to act on what we know and proceed toward early intervention.” 5

In his testimony, Mervyn Silverman of the American Foundation for AIDS Research stressed the critical need for early intervention services. “The importance of early medical intervention has dramatically increased the number of Americans urgently in need of HIV-related care—up to one million Americans are in imminent risk of developing very serious and costly AIDS-related illnesses unless this early intervention is available to slow the progression of their HIV infection. Early intervention is but a cruel myth if the treatments are available, and people cannot afford them. Medicaid funding for early intervention is essential.” 5

The drumbeat for early intervention echoed throughout both hearings, as did the call for emergency relief to urban areas hardest hit by AIDS. It was, according to the witnesses, time to respond to AIDS like other natural disasters.

Chart: Aids Cases and Deaths

HIV/AIDS Viewed as “Natural Disaster”

“Epicenters of this disease must be considered natural disaster areas and be eligible for the type of emergency funding we would afford a drought in Kansas, a flood in Texas, . . . an earthquake in San Francisco,” said Pat Christen, executive director of the San Francisco AIDS Foundation. “AIDS should be considered no less a natural disaster than any of these other tragedies . . . In the same way that we spread the cost of the drought, flood or earthquake over the whole population to assist those regions hardest hit by such anticipated disasters, we must also spread the cost of AIDS over the entire nation.” 5

Congress had acted on HIV/AIDS care in a more limited way two years earlier with several provisions in the wide-ranging Health Omnibus Programs Extension (HOPE) of 1988. In addition to provisions on HIV research and prevention, the legislation included grants for home- and community-based health services, subacute care demonstration projects, and anonymous counseling and testing programs. These programs were limited, and funding was only authorized for two or three years. As Stephen Bennet, CEO of AIDS Project Los Angeles, testified at the field hearings, “Our home health care agency is funded with pilot project money. It is all over next year; it is all over . . . All of the money is capricious money, fragile money. There is no ongoing streams [sic] of funding to provide services for people.” 5

In the spring of 1990, as the AIDS advocacy community was gearing up to build a broad consensus for action, leaders on AIDS issues in the House and Senate prepared to introduce major legislation that would provide that funding stream. The first iterations of the Senate (S. 2240) and House (H.R. 4470) bills—introduced in early March and April, respectively—included disaster relief for hard-hit urban areas. However, the two bills had significant differences.

The House Focuses on Early Intervention and Medicaid

The House bill, known as the AIDS Prevention Act of 1990, had as its centerpiece two provisions aimed specifically at getting more people tested for HIV and helping those in all stages of HIV disease get access to early intervention in hopes of slowing disease progression. One provision would have sent funds to the Centers for Disease Control and Prevention to provide State grants for HIV counseling, testing, and treatment. The other was aimed specifically at giving states the option of providing Medicaid to people with HIV.

Senator Orrin Hatch (R-UT)

Senator Orrin Hatch (R-UT) 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.

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 (Ryan White HIV/AIDS Program 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.

Elizabeth Tailor

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.

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 (Ryan White HIV/AIDS Program 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

Elizabeth Glaser founded the Pediatric AIDS Foundation

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.

Maternal and Child Health Also Garner Early Support

Title IV (Ryan White HIV/AIDS Program 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 living 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 fiscal year 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.

Ryan White’s physician listens to his lungs

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.

Communities and the Media Encourage 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 However, most of the debate focused on topics, including 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 1990. 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 However, on August 18, 1990, 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 were included.

First year spending chart 1991

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 with HIV until their disease progressed to a diagnosis of 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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