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ACT UP

1998

ACT UP, the commonly used acronym for the AIDS Coalition to Unleash Power, is a grassroots AIDS organization associated with nonviolent civil disobedience. In the late 1980s and early 1990s, ACT UP became the standard-bearer for protest against governmental and societal indifference to the AIDS epidemic. The group is part of a long tradition of grassroots organizations in American politics, especially those of the African American civil rights movement, which were committed to political and social change through the practice of "unconventional politics."

In its effort to attract media attention through direct action, the African American civil rights movement embraced various elements of unconventional politics, including boycotts, marches, demonstrations, and nonviolent civil disobedience. Like other grassroots organizations, ACT UP has been influenced by the civil rights movement to the extent that it, too, has used boycotts, marches, demonstrations, and nonviolent civil disobedience to attract media coverage of its direct action.

ACT UP was founded in March 1987 by playwright and AIDS activist Larry Kramer. In a speech at the Lesbian and Gay Community Services Center of New York, Kramer challenged the gay and lesbian movement to organize, mobilize, and demand an effective AIDS policy response. He informed the audience of gay men that two-thirds of them might be dead within five years. To Kramer, the mass media were the central vehicle for conveying the message that the government had hardly begun to address the AIDS crisis. As a part of his speech, he asked this question: "Do we want to start a new organization devoted solely to political action?"

Kramer's speech inspired another meeting at the New York center several days later, which more than 300 people attended. This event essentially signaled the birth of ACT UP. Thereafter, ACT UP/New York routinely drew more than 800 people to its weekly meetings and thus became the largest and most influential of all the chapters. By early 1988, active chapters had appeared in various cities throughout the country, including Los Angeles, Boston, Chicago, and San Francisco. At the beginning of 1990, ACT UP had spread throughout the United States and around the globe, with more than 100 chapters worldwide.

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ACT UP's original goal was to demand the release of experimental AIDS drugs. In doing so, it identified itself as a diverse, nonpartisan group, united in anger and commitment to direct action to end the AIDS crisis. This central goal is stated at the start of every ACT UP meeting. ACT UP's commitment to direct activism emerged as a response to the more conservative elements of the mainstream gay and lesbian movement. Underlying ACT UP's political strategy is a commitment to radical democracy. No one member or group of members had the right to speak for ACT UP; this was a right reserved for all members. There were no elected leaders, no appointed spokespeople, and no formal structure to the organization.

Throughout its existence, ACT UP has made an effort to recruit women and minorities into the organization. Women in ACT UP organized a series of national actions aimed at forcing the U.S. Centers for Disease Control and Prevention to change its definition of AIDS to include those illnesses contracted by HIV-positive women. ACT UP/New York attempted, without great success, to recruit African Americans and Latinos as part of its organization.

Over the years, ACT UP has broadened its original purpose to embrace a number of specific and practical goals. It has demanded that the U.S. Food and Drug Administration (FDA) release AIDS drugs in a timely manner by shortening the drug approval process and has insisted that private health insurance as well as Medicaid be forced to pay for experimental drug therapies. Ten years into the AIDS crisis, ACT UP questioned why only one drug, the highly toxic azidothymidine (AZT), had been approved for treatment. The organization demanded answers from policy elites. ACT UP also demanded the creation and implementation of a federal needle-exchange program, called for a federally controlled and funded program of condom distribution at the local level, and asked for a serious sex education program in primary and secondary schools to be created and monitored by the federal Department of Education.

Since its creation in 1987, ACT UP has also publicized the prices charged and profits garnered by pharmaceutical companies for AIDS treatment drugs. The goal was to put considerable pressure on pharmaceutical companies to cut the prices associated with AIDS treatment drugs so that they would be more affordable to people with HIV/AIDS from all class backgrounds. Class and political economy concerns are not central to ACT UP's ideology, however, but are raised only to the extent that they inform the larger public of the specific ways in which the group believes that pharmaceutical companies pursue profits at the expense of lives.

Thousands of people joined ACT UP chapters in response to what they perceived to be an outrageous lack of governmental support for addressing AIDS. Many were motivated by anger but also shared Kramer's belief that direct political action on behalf of their lives should be a key element of any organizing strategy. The media were a central target of the group, led by ACT UP members with experience in dealing with the media through professional backgrounds in public relations and reporting.

ACT UP embraced slogans such as "Silence = Death" and used political art as a way to convey its message to the larger society. In doing so, ACT UP secured media attention from the start and, as a result, communicated greater awareness of AIDS issues to both the gay and lesbian community and the larger society. The media covered ACT UP's first demonstration, held on Wall Street in New York on March 24, 1987. The goal of this demonstration was to heighten awareness of the FDA's inability to overcome its own bureaucracy and release experimental AIDS drugs in a timely fashion. This demonstration became a model for future ACT UP activities. It was carefully orchestrated and choreographed to attract media attention and to convey a practical political message.

Over the years, other ACT UP demonstrations received considerable media coverage. A 1987 protest at New York's Memorial Sloan-Kettering Hospital called for an increase in the number of anti-HIV drugs. A demonstration targeted Northwest Airlines, also in 1987, for refusing to seat a man with AIDS, and the editorial offices of Cosmopolitan magazine were invaded in 1988 as protesters challenged an article which claimed that almost no women were likely to contract HIV or develop AIDS. In 1988, more than 1,000 ACT UP protesters surrounded the FDA's Maryland building. In 1989, ACT UP activists demonstrated at the U.S. Civil Rights Commission's AIDS hearings to protest its ineptitude in responding to AIDS. Also in 1989, ACT UP/New York's "Stop the Church" demonstration disrupted Roman Catholic John Cardinal O'Connor's Mass in St. Patrick's Cathedral to protest his opposition to condom distribution. In one especially memorable action, ACT UP members invaded the studio of the MacNeil/Lehrer NewsHour on January 22, 1991, chained themselves to Robert MacNeil's desk during a live broadcast, and flashed signs declaring "The AIDS Crisis is Not Over."

In light of some of these actions, particularly the "Stop the Church" demonstration, ACT UP found itself responding to critics arguing that it had simply gone too far. The confrontational and, many felt, offensive "Stop the Church" demonstration strategy engendered considerable criticism of ACT UP from both within and outside the broader gay and lesbian movement. This and other actions exacerbated an already existing tension within the gay and lesbian movement, between those who favored more traditional lobbying activities and those who embraced the radical direct action associated with ACT UP. Many ACT UP activists became increasingly intolerant of those who worried that direct action alienated important policy elites. In addition, ACT UP came under renewed criticism from within for the chaotic, unwieldy, and often unfocused nature of its weekly meetings.

By 1992, there were also divisions within ACT UP over what should be appropriate political strategy. Since ACT UP's creation in 1987, AIDS activists had directed their anger toward perceived enemies, including the U.S. Congress and president, federal agencies, drug companies, the media, religious organizations, and homophobic politicians in positions of power at all levels of society. The divisions within ACT UP undermined organizational and movement solidarity. These divisions helped spawn other organizations, whose membership was largely composed of individuals who had previous connections to ACT UP. Queer Nation, a short-lived, radical gay and lesbian organization, appeared in June 1991 with a goal of radicalizing the broader AIDS movement by reclaiming the word "queer" and embracing confrontational politics.

In 1992, those ACT UP activists committed to a political strategy emphasizing the treatment of individuals with HIV/AIDS left ACT UP/New York and formed the Treatment Action Group (TAG). Unlike ACT UP, which was characterized by a democratic organizational structure, TAG accepted members by invitation only, and membership could be revoked by the board. In addition, TAG members received salaries, and the group accepted a $1 million check from the pharmaceutical company Burroughs Wellcome, the manufacturer of AZT, on behalf of TAG in the summer of 1992. TAG used this money to finance member travels to AIDS conferences throughout the world, to pay members' salaries, to hire professional lobbyists, and to lobby government officials.

TAG's central goal has been to force the government to release promising AIDS drugs more quickly and to identify possible treatments for opportunistic infections. It has done so by lobbying for larger and improved designs for clinical trials of protease inhibitors and other anti-HIV drugs. In addition, it has called for a more coordinated AIDS research effort at the National Institutes of Health through a stronger Office of AIDS Research. TAG has been quite effective in lobbying government officials to address its organizational goals in a timely manner. However, there has also been considerable criticism of TAG by some ACT UP members and other activists. Because the organization is perceived by some as small, elitist, and undemocratic, it has been attacked for not fully representing the interests of the larger AIDS activist movement. These criticisms are unfortunate to the extent that they fail to recognize TAG's important policy contributions in forcing government officials to support more aggressive AIDS research.

From its inception, ACT UP has had a considerable impact on AIDS-related public policy. ACT UP successfully used its nonviolent, direct-action approach to force the FDA to accelerate drug trials for AIDS and to consider ACT UP's "parallel track" proposal. Under this proposal, people with AIDS are given drugs before they are approved by the time-consuming and bureaucracy-ridden FDA approval process. ACT UP's protests also led Burroughs Wellcome to dramatically reduce the price of AZT. Other pharmaceutical companies have been shamed into cutting the prices of drugs that have demonstrated effectiveness in helping people with AIDS. In addition, ACT UP forced the redefinition of AIDS to include women and to ensure that women with AIDS received disability benefits and were included in drug trials. ACT UP members have established needle-exchange programs, which are now widely accepted as having contributed to a decrease in the rate of HIV infection among both injecting drug users and their sexual partners.

By 1996, plagued with internal division over tactics and its relationship to the larger AIDS and gay and lesbian movements and depleted by the deaths of many members, ACT UP still existed but was widely considered moribund. Nonetheless, the organization's use of direct-action politics was an example of the effectiveness of unconventional politics in the face of the unresponsiveness of policy elites. ACT UP's radicalism has also allowed the more mainstream gay and lesbian organizations to seem much more moderate as they interact with the American policy process on AIDS-related issues. In this and in other ways, ACT UP has made an invaluable contribution to saving people's lives in the face of governmental and societal indifference.


Related Entries:

Clinical Trials; Demonstrations and Direct Actions; Marches and Parades; Media Activism; United States Government Agencies


Key Words:

ACT UP, demonstrations, direct action, protest politics, Treatment Action Group (TAG)


Further Reading

ACT UP/New York Women and AIDS, Women, AIDS, and Activism, Boston: South End Press, 1990

Burkett, Elinor, The Gravest Show on Earth: America in the Age of AIDS, Boston: Houghton Mifflin, 1995

Crimp, Douglas, ed., AIDS: Cultural Analysis Cultural Activism, Cambridge, Massachusetts: MIT Press, 1988

Crimp, Douglas, with Adam Rolston, AIDS DemoGraphics, Seattle, Washington: Bay Press, 1990

Epstein, Steven, Impure Science: AIDS, Activism, and the Politics of Knowledge, Berkeley and London: University of California Press, 1996

Kramer, Larry, Reports from the Holocaust: The Story of an AIDS Activist, New York: St. Martin's, 1994

Vaid, Urvashi, Virtual Equality: The Mainstreaming of Gay and Lesbian Liberation, New York: Anchor, 1995


The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.

Encyclopedia of AIDS $25 US/832 pp/Illustrated

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