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In the face of lackluster U.S. government leadership in the AIDS epidemic, members of the gay community, particularly in urban centers that had been hard hit by HIV, became active participants in the political, medical, and social processes by which research funding was generated and treatment and prevention methods were developed. In the early 1980s much of that effort was at a local level: Gay leaders and activists raised funds, recruited help from local politicians, and set up community treatment centers that pooled resources for and information about treating AIDS patients.

In mid-1980s, frustrated by the slow pace of AIDS research and the inaccessibility of effective treatment methods--particularly drug therapies--to many AIDS patients, gay activists and their supporters began to organize in greater numbers. In 1985 Project Inform was created to provide treatment information and advocacy to members of the San Francisco community, and AMFAR (American Foundation for AIDS Research) was organized to fund and promote AIDS research and prevention. In 1986 the AIDS Treatment News was founded as a clearinghouse for new information about experimental and standard treatments. Project Inform and AIDS Treatment News were crucial to the dissemination of new and emerging medical information to AIDS patients and their caregivers and helped create a community with substantial medical and clinical knowledge. The technical expertise of AIDS advocacy groups was a key factor in their intervention in the development, pricing, and accessibility of drug treatments.

In 1987 members of the gay and lesbian community in New York formed ACT UP, the AIDS Coalition to Unleash Power, as a mechanism for forcing change in the social and political response to AIDS. Insisting on the importance of access to clinical trials for people with AIDS, ACT UP and other organizations took aim at the slow drug approval process and restrictive guidelines for clinical trials followed by the FDA. In the late 1980s and early 1990s ACT UP staged demonstrations in a variety of venues, including on Wall Street to protest the exorbitant price of the new antiviral drug AZT (azidothymidine), at the post office on the day tax returns were due to gain increased media coverage and raise awareness of the AIDS crisis, at St. Patrick's Cathedral to protest the stand of the Catholic Church on contraceptive use, and at the offices of the Hearst Corporation, whose publication Cosmopolitan in 1988 had published an article suggesting that women were not at risk of AIDS transmission during heterosexual sex.

As the nature of the AIDS epidemic changed in the 1990s, so too did the kind of activism it inspired. As activism, advocacy, and the availability of antiretroviral drugs and triple therapy began paying off in the form of a decreased death rate among the most severely affected population, homosexual men, the center of political and social activism shifted to other groups that were experiencing increased infection rates. As a result of the increased prevalence of HIV among African-Americans, activist groups became more likely to focus on improving education, treatment, and access to drugs and clinical trials among minority and low-income groups.

The growing dimensions of the AIDS crisis in developing nations, particularly in sub-Saharan Africa, engendered an increased emphasis on global aspects of AIDS treatment and prevention. Some organizations, such as Health GAP (Global Access Project), formed in 1999, and the Global AIDS Alliance, founded in 2001, were created specifically to deal with AIDS on a global level and generally advocated full funding of the United Nations' Global Fund to Fight AIDS, TB, and Malaria; debt cancellation for third-world nations; better trade policies; improved accessed to treatment; and the development of more effective prevention mechanisms. Such groups often formed coalitions with global trade activists, public health organizations, and domestic AIDS organizations, including ACT UP.

References:

Arno, Peter S., and Karyn L. Feiden. 1992. Against the Odds: The Story of AIDS Drug Development, Politics, and Profits. New York: HarperCollins.

Farber, Celia. 2006. Serious Adverse Events: An Uncensored History of AIDS. Hoboken, NJ: Melville House.

Shilts, Randy. 1988. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: Penguin.

Treichler, Paula A. 1999. How to Have Theory in an Epidemic: Cultural Chronicles of AIDS. Durham, NC: Duke University Press.

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