ACT UP (1987): AIDS Activism and the Fight for Treatment

ACT UP, the AIDS Coalition to Unleash Power, was a direct-action protest group founded in New York City in March 1987 to force governments, drug companies and churches to respond to the AIDS epidemic. Through noisy, carefully staged protests at places such as Wall Street, the Food and Drug Administration (FDA) and St Patrick’s Cathedral, it drew public attention to a disease that was killing tens of thousands of Americans. ACT UP also became expert in medical research and helped change how new drugs are tested and approved.

Background: the AIDS crisis in the 1980s

The first cases of what became known as AIDS were reported in the United States in June 1981. The virus that causes it, later named HIV, was identified in 1983 (see the discovery of HIV). By the mid-1980s AIDS had killed thousands of people in the United States, many of them gay men, injecting drug users and people with haemophilia, and there was no effective treatment.

Many activists felt that the federal government, then led by President Ronald Reagan, was responding too slowly. Research funding was limited, public health messages were often blocked by moral objections, and people with AIDS faced discrimination in jobs, housing and health care. Gay communities, which had organised politically since the Stonewall riots of 1969, built their own support services, such as Gay Men’s Health Crisis, founded in New York in 1982.

The founding of ACT UP

On 10 March 1987 the playwright Larry Kramer, a co-founder of Gay Men’s Health Crisis who had become frustrated with its cautious approach, gave a fiery speech at the Lesbian and Gay Community Services Center in Greenwich Village. He urged his audience to take angry, public action. Two days later around 300 people met and formed ACT UP.

The group had no formal president. Decisions were taken at open weekly meetings, and members formed committees and small “affinity groups” to plan actions. Its visual style became famous: the “Silence = Death” poster, with a pink triangle on a black background, was created by an artists’ collective in 1986–1987 and adopted by the group, and later the art collective Gran Fury produced posters, stickers and placards for its campaigns.

Early actions: Wall Street and the price of AZT

In March 1987 the FDA approved AZT (zidovudine), the first drug shown to slow the disease. Made by Burroughs Wellcome, it cost around 8,000 to 10,000 dollars a year per patient, making it one of the most expensive drugs ever sold at that time. On 24 March 1987 ACT UP held its first protest on Wall Street, blocking traffic to demand faster approval of drugs and lower prices.

The price of AZT remained a target. On 14 September 1989 a small group of ACT UP members, including Peter Staley, slipped into the New York Stock Exchange and chained themselves to a balcony, disrupting the opening of trading. A few days later Burroughs Wellcome cut the price of AZT by 20 per cent.

Seize Control of the FDA

ACT UP’s most influential protest took place on 11 October 1988 at the FDA headquarters in Rockville, Maryland. More than a thousand activists from across the country surrounded the building, staged “die-ins” with mock tombstones and blocked entrances. Police made well over a hundred arrests.

The protest was carefully prepared. Members of ACT UP’s Treatment and Data Committee had studied how drugs were tested and approved and presented detailed demands: faster review, access to experimental drugs for people who had no other options, and an end to placebo-only trials for patients facing death. Within the following years the FDA adopted reforms, including a “parallel track” allowing very sick patients to receive promising drugs while trials continued, and in 1992 a formal accelerated approval pathway.

Stop the Church

On 10 December 1989 ACT UP and the women’s health group WHAM! held a protest called Stop the Church at St Patrick’s Cathedral in Manhattan. They opposed Cardinal John O’Connor’s stance against condom education in AIDS prevention and against abortion rights. Thousands demonstrated outside, while some activists disrupted Mass inside the cathedral.

More than 100 people were arrested. The protest caused outrage, especially because one protester threw down a communion wafer, and it was condemned by politicians, the press and some gay activists who thought it had gone too far. Supporters argued that it forced public debate on the church’s role in public health policy.

Key people

• Larry Kramer (1935–2020), playwright and author of “The Normal Heart”, whose speech inspired the group’s founding.
• Peter Staley, a former bond trader who became one of ACT UP’s leading treatment activists.
• Mark Harrington, a member of the Treatment and Data Committee who helped write activists’ research proposals and later co-founded the Treatment Action Group.
• Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, was a frequent target of protests but came to work closely with activists on research design.

Impact on medicine and policy

ACT UP’s lasting achievement was to give patients a voice in medical research. Activists joined advisory committees of the National Institutes of Health and pressed for trials that included women, people of colour and drug users, who had often been excluded. On 21 May 1990 the group led a large “Storm the NIH” protest at the National Institutes of Health in Bethesda, Maryland, to press for broader research.

In 1992 some leading treatment activists left to form the Treatment Action Group, while other members focused on housing, prisons, needle exchange and women’s health. Chapters had spread across the United States and abroad, including ACT UP Paris, founded in 1989. When combination antiretroviral therapy became available in 1996, deaths from AIDS in the United States fell sharply, a breakthrough that activists had helped to speed up through their pressure on research and regulators.

Legacy

ACT UP is widely regarded as one of the most effective health-activist movements in history. Its methods, combining street protest, striking graphic design, media skills and scientific expertise, influenced later campaigns on breast cancer, global access to medicines and other causes. It also shaped LGBT politics, contributing to changing attitudes that followed earlier milestones such as the American Psychiatric Association’s 1973 decision on homosexuality.

The group’s history has been preserved through an oral history project and documentaries such as “How to Survive a Plague” (2012) and “United in Anger” (2012). ACT UP New York still meets, though on a much smaller scale than at its height in the late 1980s and early 1990s.

Timeline

• 1981, June: First US reports of the illness later called AIDS.
• 1987, 10 March: Larry Kramer’s speech in Greenwich Village calls for action.
• 1987, 12 March: ACT UP is founded at a meeting in New York.
• 1987, 24 March: First ACT UP protest on Wall Street.
• 1988, 11 October: Seize Control of the FDA protest in Rockville, Maryland.
• 1989, 14 September: Activists disrupt the New York Stock Exchange over the price of AZT.
• 1989, 10 December: Stop the Church protest at St Patrick’s Cathedral.
• 1990, 21 May: Storm the NIH protest in Bethesda, Maryland.
• 1992: The FDA formalises accelerated approval; the Treatment Action Group is formed.

Why it matters

ACT UP showed that people affected by a disease could change how science and government work. Its protests and research advocacy helped speed up access to life-saving drugs, and its model of informed, confrontational activism remains influential in health and civil rights campaigns.