Category: Society & Economics Key figures: Larry Kramer (playwright, initiating organizer), Douglas Crimp (cultural theorist), Maria Maggenti, Gregg Bordowitz
ACT UP — the AIDS Coalition to Unleash Power — was established on March 12, 1987, at the Lesbian and Gay Community Services Center in New York City. The organization emerged directly from the AIDS crisis that had devastated gay communities and other affected populations in the United States throughout the 1980s. Larry Kramer, a playwright and co-founder of Gay Men’s Health Crisis (GMHC), had grown frustrated with what he viewed as insufficient urgency in the political response to the epidemic. Invited to speak at a rotating speaker series at the Center, Kramer posed a direct question to the roughly 300 people who attended: whether they wanted to form a new organization committed to direct political action. The response was enthusiastically affirmative, and ACT UP held its founding meeting two days later.
The group defined itself as a non-partisan organization united in anger and committed to non-violent direct action to end the AIDS crisis. Its founding demands included greater government funding for AIDS research, faster approval and lower pricing of experimental treatments, and a coordinated national policy response — demands that targeted the Reagan administration’s perceived inaction on the epidemic, in which the President had not publicly mentioned AIDS until 1987.
ACT UP’s first public action came less than two weeks after its founding: on March 24, 1987, approximately 250 members marched on Wall Street to protest the high cost and lack of availability of HIV treatments, particularly the antiretroviral drug AZT manufactured by Burroughs Wellcome. Seventeen activists were arrested during that action. By June 1987 the group was also targeting corporate practices, protesting Northwest Orient Airlines over its policy of barring people with AIDS from flights; lawsuits brought in connection with that campaign ultimately reversed the policy. At the Second National March on Washington for Lesbian and Gay Rights in October 1987, ACT UP made its national debut, inspiring participants from across the country to return home and form local chapters in Boston, Chicago, Los Angeles, San Francisco, Washington D.C., and other cities.
ACT UP transformed how the United States — and eventually the world — responded to the AIDS crisis. Its most consequential institutional impact was on the U.S. Food and Drug Administration: a large-scale demonstration at FDA headquarters in October 1988, underpinned by members who had educated themselves deeply in pharmacological research and drug approval procedures, compelled the agency to accelerate the availability of experimental HIV treatments. Government agencies subsequently began consulting ACT UP directly on AIDS policy, an unprecedented acknowledgment of patient-advocacy expertise.
Over a sustained campaign, ACT UP also forced a change to the Centers for Disease Control and Prevention’s definition of AIDS to include opportunistic infections affecting women and injection drug users — a definitional change that saved millions of lives by making those patients eligible for disability benefits and experimental treatment access. The group’s highly visible, media-sophisticated tactics — which combined street protest, graphic design, and civil disobedience — altered the broader relationship between advocacy movements and medical institutions, establishing a model of patient-driven research engagement that influenced subsequent health advocacy far beyond HIV/AIDS.