In 4th Part of Series, Kaiser Daily HIV/AIDS Report Looks at 20 Years of Legislation and Policy
On June 5, 1981, the CDC introduced the world to the disease that eventually became known as AIDS. Although the disease had been present in the United States and elsewhere before this time, it was the first known mention of AIDS in a media report. Over the years, media coverage of AIDS has evolved from having an air of mystery to reports of panic, stigma and homophobia; from domestic epidemiology and policies to international crises and drug access. This week, the Kaiser Daily HIV/AIDS Report will feature stories on different aspects of the media's coverage of the disease over the past 20 years, including treatment advances, federal legislation, public fear and stigma and AIDS in the arts. The following report, the fourth in our series, examines some of the larger legislative and policy actions taken in response to the epidemic over the last 20 years, although the story is not intended to be a comprehensive index of all government actions on AIDS taken since 1981.
The Reagan Years
AIDS activists were "sharply" critical of President Reagan, who was president during the early years of the AIDS epidemic, saying he largely "ignor[ed] the growing health care crisis" during his two administrations (Robinson, Boston Globe, 12/23/89). Although the federal government first appropriated funding for AIDS research in 1982, the Reagan administration regarded the disease for years as a state and local problem. Even as HHS officials privately sought increased funding for research in the early 1980s, Reagan did not view the situation as a national problem until the disease hit him personally (Rimmerman, The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, 1998). According to Dr. John Hutton, Reagan's White House physician, the president thought of AIDS as if "it were measles and would go away" (Cannon, The Role of a Lifetime, 1991). However, this attitude started to change on Oct. 2, 1985, with the AIDS-related death of Rock Hudson, a personal friend of Reagan's (The Encyclopedia of AIDS, 1998). The following day, the House allocated $189.7 million for AIDS programs, $70 million more than Reagan had requested. The bill, which passed by a vote of 417-7, appropriated $140.6 million to NIH to study the cause of AIDS (Houston Chronicle, 10/3/85). Though Congress had taken these actions, members of the administration remained opposed to additional funding and to public education campaigns about AIDS (The Encyclopedia of AIDS, 1998).
'Final Judgement Is Up to God'
In February 1986, Reagan directed then-Surgeon General C. Everett Koop to prepare a report on the AIDS epidemic. The Los Angeles Times reported that the study, released Oct. 22, 1986, was "unusually explicit" for a government report, as it described the methods of transmitting the disease. The report called for increased federal action on HIV/AIDS, including condom distribution and education campaigns, as well as comprehensive sex education in schools. In addition, Koop opposed mandatory HIV/AIDS testing for immigrants, saying such a policy would be "unmanageable and cost prohibitive." The Times reported that the Reagan White House had reviewed and approved the report (Cimons, Los Angeles Times, 10/22/86). But in a 1987 speech at the Third International AIDS Conference in Washington, D.C. -- notable also for being the first time Reagan publicly said the word "AIDS" -- the president "reject[ed]" Koop's advice and endorsed mandatory testing for federal prisoners and immigrants, announcing he had ordered HHS to add AIDS to a list of diseases used to deny entry into the United States for immigrants and undocumented aliens. Reagan did call for increased education campaigns, saying that "education is critical to clearing up the fears" surrounding AIDS, and issued a "denunciation of discrimination," saying, "This is a battle against disease, not against our fellow Americans." But he added that "AIDS education, or any aspect of sex education, will not be value-neutral," and drew "hissing" when he said, "Final judgement is up to God." (Condon, San Diego Union Tribune, 6/1/87). In all, Reagan's proposals were criticized as doing "almost nothing to stop AIDS" (Pike, Newsday, 6/10/87)
The Advent of AZT and the Helms Amendment
After the FDA approved AZT for AIDS patients in March 1987, Reagan signed a supplemental appropriations bill on July 11 that allocated $30 million to create the AIDS Drug Assistance Programs (ADAPs), emergency funds to help low-income patients purchase the drug. Administered by the Health Resources and Services Administration, the funds were intended for patients who were not covered by Medicaid, or who lived in states where Medicaid did not cover the treatment (HRSA fact sheet, 6/6). The funds were to be distributed to states in proportion to their number of AIDS cases to pay for AZT, which cost about $10,000 annually per patient. States determined eligibility for the funding and could require a copayment (UPI/Houston Chronicle, 7/25/87). Later that year, as part of an appropriations bill that contained more than $946 million for AIDS education and research efforts, the Senate passed an amendment sponsored by Sen. Jesse Helms (R-N.C.) that prohibited federal funding for programs that promoted homosexuality or drug use. In addition, the amendment required that AIDS education materials stress abstinence (AP/Orange County Register, 10/15/87).
Reagan's 10-Point Plan
In 1987, Reagan appointed a commission to draft a federal response to the AIDS crisis. Dubbed the Watkins Commission after chair Adm. James Watkins, the commission issued 597 recommendations on Aug. 2, 1988. Reagan dismissed most of the suggestions, some of which called for federal antidiscrimination legislation to protect those with HIV/AIDS and increased AIDS education efforts. Instead, the president issued a 10-point plan to protect HIV-positive workers from discrimination (Liebert, San Francisco Chronicle, 8/3/88). Later that year, Reagan signed the Health Omnibus Programs Extension Act (HOPE), which appropriated about $870 million a year for AIDS research and education programs. Debate on the bill in Congress focused on a provision that would guarantee the confidentiality of AIDS testing results and antidiscrimation measures, but those provisions were dropped from the final spending bill (AP/Dallas Morning News, 11/5/88).
The First Bush Years
President Bush, like his predecessor, received criticism for his "lack of attention to AIDS" (Knox, Boston Globe, 12/1/91). Activists charged that the president said too little about AIDS and blocked certain prevention campaigns. But the Boston Globe reported that Bush also sent "various signals of concern" for those with AIDS, particularly children, mentioning the disease in his presidential acceptance speech. In December 1989, the president and First Lady Barbara Bush gave "the most dramatic demonstration" to date that AIDS patients had White House attention when they visited two AIDS wards at the NIH (Robinson, Boston Globe, 12/23/89). The visit marked the "first personal encounter between a president and an AIDS patient" since the disease had been identified (Atlanta Journal-Constitution, 12/24/89). Bush received activist praise for some moves, such as backing the Americans with Disabilities Act, which included people with AIDS (Woodard, Newsday, 8/7/89). However, AIDS activists chastised the Bush administration -- during which the number of U.S. AIDS cases passed the 100,000 mark -- for reducing AIDS program funding, opposing needle-exchange programs and twice declining invitations to attend the International AIDS Conference (Garrett/Woodard, Newsday, 6/25/90). Below are some of the AIDS-related legislation and policies adopted during the Bush administration.
- OSHA standards: In the summer of 1989, the Occupational Safety and Health Administration proposed standards to protect workers against bloodborne pathogens, marking its "first attempt to control biological hazards." Under the final standard, employers of workers with the potential to be exposed to blood or other infectious materials would establish a written infection control plan and would furnish employees with protective equipment and clothing (Occupational Hazards, 7/1/89).
- New surgeon general: After "lobbying unsuccessfully" to become HHS secretary, Surgeon General C. Everett Koop, "whose outspoken advocacy of explicit AIDS education kept him in hot water with conservatives," resigned from his post in 1989 (Woodard, Newsday, 9/19/89). To replace Koop, Bush appointed Dr. Antonia Novello, who had served as deputy director of the National Institute of Child Health and Human Development at NIH and chaired the Pediatric Task Force for AIDS (Toronto Star, 10/28/89). Novello told Americans they "must begin thinking about AIDS as a disease that strikes whole families, not just adults" (Shannon, Associated Press, 10/23/89).
- National Commission on AIDS: In 1989, Bush appointed to the National Commission on AIDS its two final members, including an Ohio mother with the disease (Woodard, Newsday, 7/26/89). Congress had established the commission in 1988. In one of its first actions, the panel criticized the Bush administration for its "reluctance to finance" through Medicaid early treatment for people infected with HIV (Woodard, Newsday, 8/3/89). In its first official report, the commission "issued an urgent plea" to Bush for a national strategy to combat AIDS, "backed with federal dollars" (Woodard, Newsday, 12/7/89). And in its third report, released in August 1990, the panel used its "strongest language" to date against the administration, "assailing ... the nation's rural health care system and the 'shocking number' of medical professionals" unwilling to treat people with HIV (Hilts, New York Times, 8/22/90).
- Ryan White CARE Act: In the summer of 1990, Congress "overwhelmingly" approved and President Bush signed into law the Ryan White Comprehensive AIDS Resource Emergency Act, which provided federal funding for "comprehensive health and social services for people living with AIDS and HIV" (White, Gannett News Service, 9/18/90). Congress appropriated $220.5 million for the CARE Act in its first year ( Kaiser Family Foundation timeline, 5/25). The CARE Act also incorporated the ADAPs, which had started under Reagan, giving states the option to "cover any FDA-approved drug that could prolong life or prevent deterioration of health" of an HIV-positive individual (HRSA fact sheet, 6/6).
- Americans with Disabilities Act: In 1990, Bush signed the ADA, which bans discrimination against people with disabilities, defined as anyone with a mental or physical impairment limiting "some major life function," including AIDS patients (AP/San Francisco Chronicle, 7/27/90). The new law prohibited discrimination against the disabled in employment, public accommodations, transportation and telecommunications and required that reasonable accommodations be made for them in the workplace (Shaw, Newsday, 7/27/90).
- Housing Opportunities for Persons with AIDS: Congress passed HOPWA in 1991, providing housing assistance and related supportive services for low-income persons with HIV/AIDS and their families. The law, administered by the Department of Housing and Urban Development, provided formula-determined grants to states and metropolitan areas with the largest number of AIDS cases, as well as funds to competitively selected projects proposed by state and local governments and nonprofit organizations (HUD Web site, 6/6). The law was prompted by a "landmark agreement" between the National Gay Rights Advocates and the federal government that added people with AIDS and AIDS-related complex to the list of those eligible for federal housing subsidies (Herscher, San Francisco Chronicle, 4/20/91).
- CDC guidelines to providers: In 1991, the CDC issued recommendations that health care practitioners infected with either HIV or the hepatitis B virus voluntarily refrain from engaging in certain procedures that carry a "substantial risk" of infection for the patient (Colen, Newsday, 4/6/91). The guidelines, prompted by the transmission of HIV from a Florida dentist to five patients, emphasized strict adherence to standard infection-control measures but did not mandate blood tests for health care workers (Dallas Morning News, 7/16/91).
- Ban on HIV-positive immigrants and visitors: In January 1991, then-HHS Secretary Louis Sullivan recommended that HIV be removed from the list of diseases that could ban immigrants from entering the United States (Hilts, New York Times, 1/4/91). The media reported through the first half of the year that the Bush administration would lift the ban. But as a June 1 deadline approached, the administration in May dropped its plan to reverse the policy. In response, organizers of the 1992 International AIDS Conference, planned for Boston, moved the gathering to a venue outside the United States (Krieger, San Francisco Examiner, 8/16/91).
- New Social Security rules: Responding to pressure from "Congress, doctors and people infected [with HIV]," the Bush administration in late 1991 devised new rules to "speed" Social Security benefits to people disabled by HIV or AIDS. Under the rules, HIV-positive individuals could qualify for disability benefits under Social Security if they were unable to perform "any substantial gainful activity." In a memo accompanying the new rules, then-Social Security Commissioner Gwendolyn King said that "an individual need not have full-blown AIDS to be found disabled" (Pear, New York Times, 12/17/91).
The Clinton Years
Unlike his predecessors, who "found it hard to mention AIDS and who avoided visiting the AIDS Memorial Quilt even when it was spread out in front of the White House South Lawn," President Clinton was an "avatar of raised consciousness" about AIDS, the New Republic said (The New Republic, 6/9/97). Steps Clinton took included the creation of the White House Office of National AIDS Policy, the appointment of a national AIDS czar and the creation of the 35-member Presidential Advisory Council on HIV and AIDS. In addition, the Clinton administration hosted the first White House conference on HIV/AIDS. The administration also increased AIDS research funding by more than 57%, AIDS prevention funding at HHS by 36%, and Ryan White CARE Act funding by more than 260%. During 1998, President Clinton announced a $10 million initiative at USAID to assist international AIDS orphans and a $156 million initiative to improve treatment and prevention efforts among African Americans, Hispanics and other minorities. The administration also steadily increased ADAP funding, up to $461 million per year by 2000 from $52 million in 1993 (Office of National AIDS Policy Web site, 5/21). Below are additional AIDS-related legislation and policies adopted during the two Clinton administrations.
- AIDS and immigrants: Soon after taking office, Clinton set out to "abolish" the "controversial" rule that prohibited people with HIV from entering the country (Lauter/Cimons, Los Angeles Times, 2/5/93). However, Clinton's efforts were slowed by the Senate approving a provision to keep the ban that was attached to an NIH spending bill. House members undertook a "similar effort" (AP/Orange County Register, 2/29/93). Despite his objections, Clinton approved the NIH spending bill that included the ban (AP/San Diego Union-Tribune, 5/29/93).
- AIDS and the military: As an amendment to the annual defense appropriations bill, "prominent conservative" Rep. Robert Dornan (R-Calif.) proposed in 1994 that the Defense Department discharge more than 1,400 military members with HIV (Warner, Orange County Register, 3/16/94). Although the Senate and House approved the amendment, Clinton vetoed the overall defense spending bill, saying that the provision expelling service members with HIV was "unfair" (Knutson, Ft. Worth Star-Telegram, 12/29/95).
- Ryan White CARE Act reauthorizations: As the time came for the CARE act to be reauthorized, AIDS activists were "worried" about whether the program's funding would be cut (Rochell, Atlanta Journal-Constitution, 1/28/95). In the Senate, Helms was "determin[ed]" to reduce the amount of federal money spent on AIDS because he believed people's "deliberate disgusting, revolting conduct" was responsible for AIDS (Seelye, New York Times, 7/5). The "issue of mandatory [HIV] testing of newborns" also created a "months-long stalemate" in reaching an agreement on the reauthorization, but eventually the House and Senate reached a compromise (Anderson, Associated Press Political Service, 5/1/96). The final bill, signed in 1996, revised the original funding formula, which had counted both living and dead AIDS patients in determining a city's AIDS funding allocations. Under the new formula, funding allocation was based on the estimated number of AIDS patients living in a city. The funding system was changed again in 2000, when Congress reauthorized the act for another five years. This time, the "legislation factors in HIV infections as well as AIDS cases" in determining how federal money will be distributed (Associated Press, 10/20/00).
- Ricky Ray Relief Fund Act: Rep. Porter Goss (R-Fla.) introduced on Feb. 24, 1995, the Ricky Ray Relief Fund Act, intended to compensate people with hemophilia who had contracted HIV through tainted blood products, anticipating a "hard sell in a budget-slashing Congress" (Groer, Orlando Sentinel, 2/23/95). Late in the legislative process, the bill "became controversial," as people without hemophilia who had contracted HIV through tainted blood transfusions argued that they, too, should be compensated (Rizzo, AP/Cleveland Plain Dealer, 10/22/98). In November 1998, Clinton signed the bill into law, establishing a trust fund of $750 million. The act gave a "one-time compassionate payment of $100,000" to people with hemophilia who had contracted HIV through use of contaminated blood products (National Hemophilia Foundation release, 11/13/98).
- 1999 Work Incentives Improvement Act: Though "overshadowed by the conclusion of a lengthy, acrimonious debate on federal spending and the rush of Congress to adjourn for the year," lawmakers approved the act, which would allow people with disabilities, as well as individuals with diseases such as AIDS, to go back to work without "fear of losing federal health benefits." Clinton called the bill the "most significant milestone for the disabled since the 1990 Americans with Disabilities Act" (Anderson, Los Angeles Times, 11/21/99). Clinton signed the "landmark" bill -- the last law signed during the 20th century -- surrounded by "advocates for the disabled gathered ... at the Franklin Delano Roosevelt Memorial" (Lacey, New York Times, 12/18/99).
- Medicaid coverage waivers: Granting waivers under section 1115 of the Social Security Act, HHS Secretary Donna Shalala approved requests from Maine, Massachusetts, and Washington, D.C., to create demonstration projects that would allow at least some persons with HIV to be considered Medicaid eligible. Without a waiver, only patients with AIDS are considered eligible for Medicaid benefits (Kaiser Daily HIV/AIDS Report, 3/13).
- International AIDS focus: The Clinton administration initially fought efforts by South Africa and Thailand to make cheaper, generic versions of patented HIV/AIDS drugs (Chicago Tribune/Baltimore Sun, 4/30/99). In April 1999, the U.S. trade office cited South Africa on its Watch List, saying that the nation's Medicines and Related Substances Act, which permits parallel importing and compulsory licensing of generics, could potentially "abrogate patent rights." Late in 1999, however, the White House reversed this policy, saying the trade office would adopt a "don't ask, don't tell stance" and "look the other way" when South Africa began to manufacture or import generic AIDS drugs (Cooper/Zimmerman/McGinley, Wall Street Journal, 3/2). In April 2000, the Clinton administration, "convinced that the global spread of AIDS [was] reaching catastrophic dimensions," formally declared the disease a national security threat and ordered the National Security Council to "reasses[s] the government's efforts" to combat the disease overseas (Gellman, Washington Post, 4/30/00). In May 2000, Clinton issued an executive order that declared the United States would not "seek to interfere" with African countries that "may violate U.S. patent law in order to provide AIDS drugs at lower prices" (Lewis, New York Times, 5/11/00). And in August of that year, a week before "his final presidential trip to Africa," Clinton signed a bill that established a trust fund to care for Africans with AIDS and authorized U.S. contributions of $300 million over two years (AP/San Antonio Express-News, 8/19/00).
The George W. Bush Years
Although President Bush is only a few months into his term, he has already taken some action on HIV/AIDS. Less than three weeks after Bush's inauguration, White House Chief of Staff Andrew Card told USA Today that the administration intended to close the Office of National AIDS Policy, "anger[ing]" AIDS activists. But one day later, Card announced he "had erred" and that the office would remain open (VandeHei/Phillips, Wall Street Journal, 2/8/01). In April, Bush named Scott Evertz as ONAP director. Evertz, known as a person with a "knack for producing bipartisan consensus," is the "first openly gay man to be appointed by a Republican president" (Heredia, San Francisco Chronicle, 4/10). AIDS, particularly how the United States handles the disease in foreign nations, also represents "one of the Bush administration's first tests of compassionate conservatism" National Journal reports. In his "first major move on the international AIDS issue," Bush reaffirmed a 2000 Clinton executive order that requires the U.S. trade representative to avoid taking action when sub-Saharan African countries manufacture or import generic versions of U.S-patented anti-AIDS drugs. Bush's budget proposal also includes a 10% increase in funding for global AIDS programs that are coordinated by USAID and a 14% increase in international AIDS-related funds for the CDC and NIH. In addition, the administration has announced a $200 million contribution to a new international AIDS fund, though this amount has been criticized as too small. Congressional members and activists thus far "have looked to [Secretary of State Colin] Powell to take the lead" on international AIDS policy, the National Journal reports. Powell has "endorsed" the view that AIDS in Africa is "an issue of national security for the United States."
In Congress, Sen. Bill Frist (R-Tenn.) has proposed a bill expressing Congress' support for doubling U.S. contributions to international AIDS programs to $1 billion over the next two years. Rep. Juanita Miller-McDonald (D-Calif.) has proposed legislation that would authorize $15 million over the next three years to AIDS efforts in sub-Saharan Africa and India (Warner, National Journal, 5/12/01). And House Minority Leader Richard Gephardt (D-Mo.) and Rep. Nancy Pelosi (D-Calif.) on June 5 reintroduced the Early Treatment for HIV Act (HR 2063), which would expand Medicaid coverage to low-income people with HIV before a diagnosis of AIDS (Gephardt/Pelosi statement, 6/5). However, with the administration "focusing its attention on the international epidemic, domestic funding won't change," the San Francisco Chronicle reports. For example, Bush's proposed FY 2002 budget gives no funding increase to the Ryan White CARE Act, "to the chagrin of" many groups (Heredia, San Francisco Chronicle, 4/10/01).
The other parts of the Kaiser Daily HIV/AIDS Report 20th anniversary series are available online:
- The June 4 article examines early media coverage of the epidemic.
- The June 5 article examines the stigmas surrounding HIV/AIDS.
- The June 6 article looks at HIV/AIDS in the arts.
- The June 8 article recaps advances in treatment.