Stories of Success: How ACT UP Forced Action on HIV/AIDS

Before he was known as the face of America’s COVID-19 response, Dr. Anthony Fauci was one of the most protested men in America thanks to playwright Larry Kramer and his loose network of activist groups known as the AIDS Coalition to Unleash Power (ACT UP).

Founded in 1987 at the height of the HIV/AIDS epidemic in America, ACT UP as a group, and Kramer personally, targeted Fauci with numerous direct actions and media hits during his earliest years as director of the National Institute of Allergy and Infectious Disease (NIAID). Fauci thought of himself as an ally for those dealing with HIV/AIDS, and had developed a cordial working relationship with AIDS activists, including many leaders of ACT UP—but this didn’t prevent the group from organizing a massive march on the National Institutes for Health (NIH) in 1990, where Fauci’s department was headquartered. Activists set up a mock graveyard, unleashed rainbow-colored smoke grenades, and one demonstrator even brought an effigy of Fauci’s head on a stick.

“I was becoming friends with some of [the ACT UP leaders], like Peter Staley and Mark Harrington,” Fauci told the Washington Post earlier this year for an article on his relationship with HIV/AIDS activists, one that was at times both warm and fraught. “I felt very strongly that we needed to get them into the planning process because they weren’t always right, but they had very, very good input.”

The 1990 march was audacious, attention-grabbing and brilliantly targeted. Going after Dr. Fauci may, in retrospect, look like an activist network making life hell for a previously unknown bureaucrat, but ACT UP simply knew which levers of power needed pulling. After the 1990 march and numerous other direct actions, Fauci and the NIAID helped push to approve testing for new drugs and expanded clinical trials to a more diverse array of HIV/AIDS patients. 

It was a small victory for a group with some 80 active chapters and thousands of members across the country, but repeatedly fighting and winning little battles was how ACT UP not-so-quietly led one of the most successful social movements of the 20th century.

Founded out of frustration

When Larry Kramer founded ACT UP New York in March 1987, the rest of the nation was just beginning to reckon with the spread of HIV/AIDS, which had become a full-on pandemic in the gay community. President Ronald Reagan had not even mentioned AIDS in a public remark until two years earlier—the same year actor Rock Hudson died of AIDS—and would not give a major speech on the crisis until a month after ACT UP’s founding.

Kramer, who passed away earlier this year, founded ACT UP out of frustration with both the federal government’s response to the crisis, as well as what he saw as a lack of public pressure from gay rights groups. Indignation and urgency were driving forces for ACT UP activists, many of whom were HIV/AIDS positive and died in the course of their work.

“Illness and death were constant presences in ACT UP,” writes activist and historian L.A. Kauffman in her book “Direct Action: Protest and the Reinvention of American Radicalism.”

“To join ACT UP, whatever your HIV status, was to be a part of a movement of people literally fighting for their lives, a movement whose members were continually dying.”

This sense of urgency led ACT UP to combine a radical and confrontational style with merciless pragmatism, always searching for ways to take action aimed at a specific battle that was key to the larger war. It may sound like an obvious game plan in retrospect, but Kauffman and others describe ACT UP’s unique combination of hard-headed strategy and in-your-face tactics as a ray of light in otherwise stale, powerless activist circles.

Not long after its founding, ACT UP quickly began to rack up victories. In 1987 alone, ACT UP actions contributed to the FDA shortening its new drug approval process and to Northwest Orient Airlines reversing its policy banning persons with AIDS from flying. ACT UP would go on to shut down the New York Stock Exchange in 1989 in protest of high costs for the drug AZT. Less than a week later, Burroughs Wellcome, the drug’s producer, slashed the price of AZT by 20%.

“One way to become a successful activist group is to win things,” Rachel Maddow, the cable news star and former ACT UP activist, told Vox’s Ezra Klein in a 2016 interview. “And people want to join a group that can win things.”

Maddow was one of thousands of young LGBTQ+ activists inspired by ACT UP’s success to join up with one of the group’s dozens of chapters across the country. These chapters, while loosely affiliated, acted completely independently, while their many sub-groups and committees likewise operated with a level of autonomy that allowed for agile responses and an astounding number of actions.

“Hardly a week went by in the peak years of the crisis without some kind of direct action on AIDS,” Kauffman writes, citing demonstrations in cities like Milwaukee, Kansas City and New Orleans, hardly hotbeds of radical activism.

Unlikely allies, complimentary skills, and a winning coalition

ACT UP also helped to bridge an alliance between gay men and lesbians, whom Kauffman describes as previously at loggerheads over competing visions of sexual liberation and destruction of the patriarchy. While experienced lesbian activists brought a wealth of knowledge on targeted activism from their work in fighting apartheid and abortion restrictions, many gay professionals from the advertising and media world helped package these tactics in order to provide maximum saturation. Kauffman describes a 1988 demonstration at the FDA, where ACT UP leaders instructed protesters to line up with signs indicating their hometown, encouraging reporters from those cities to seek them out for interviews in local papers.

The success of ACT UP was not solely due to its ability to agitate, but also to the expertise of its sub-group members, like those on the ACT UP New York Treatment and Data Committee. Members devoted their lives to studying the science and procedures playing out in federal testing and drug development, eventually crafting their own treatment plan that they presented to government scientists and pharmaceutical companies. This was the “inside/outside” strategy that many advocacy groups practice today, pressuring officials into letting a group into the fold, then using their expertise to drive the conversation with decision-makers.

ACT UP would eventually meet the fate of many radical groups of its time, devolving into internal strife and disagreements, leading to the separation and dissolution of many of its issue groups and local chapters in the early to mid-’90s. The Treatment and Data Committee, having earned the ire of other ACT UP activists due to its willingness to work with government and pharmaceutical officials, would split off in 1992 to form the Treatment Action Group, an HIV/AIDS think tank and advocacy organization active today.

Three years later, scientists would make a major breakthrough in treatment with the development of protease inhibitors, which make HIV a manageable health condition. Despite the group’s eventual demise, Kauffman and others cite ACT UP and its sustained pressure campaigns as a driving force behind the development of life-saving treatments for HIV/AIDS patients.

“Did Act-Up play a significant role in the whole idea of expanded access to experimental drugs?” Dr. Fauci asked in a 1990 interview with the New York Times. “The answer is yes.”