25 years later, activists recall ACT UP's legacy

  • by Liz Highleyman
  • Wednesday March 21, 2012
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The AIDS Coalition to Unleash Power, better known as ACT UP, held its first action on March 24, 1987, a protest on Wall Street demanding access to experimental drugs and an end to discrimination against people with AIDS.

A quarter century later, many of ACT UP's aims have been realized �" at least for people in industrialized countries with money or good insurance. Activist pressure, along with the efforts of dedicated researchers and a dose of good luck, produced combination antiretroviral therapy that dramatically reduced death from AIDS and allows HIV-positive people who receive timely treatment to live a near-normal lifespan.

But some of ACT UP's grander ambitions �" including elimination of homophobia, racism, and sexism, and establishment of social and economic justice �" proved harder to attain and remain goals for contemporary activists.

"ACT UP brought thousands of powerful voices together, worldwide, crying out for economic justice and treatments and cures for HIV disease," ACT UP/New York member George Carter told the Bay Area Reporter. "Desperation, suffering, and death drove us then and drive us still."

A brief history

ACT UP was founded in March 1987 by a group of activists who attended a talk by author Larry Kramer at the LGBT Community Center in New York City. Kramer asked two-thirds of the audience to stand up, and told them they would be dead in five years. Attendees agreed to hold a follow-up meeting and were soon planning actions.

"What happened at the Monday night meetings was a miraculous coming together of assorted tribes with one goal in mind: stop people from dying of AIDS or getting infected," recalled early member Michael Petrelis. "We brought our fears and love, fierce intelligence, desperate hopes, political ideas, crazy anger, sexual desires, and do-able demands to keep more of us alive longer and as healthy as possible."

On March 24, ACT UP held its first demonstration, a "die-in" on Wall Street to protest the high price of AZT (then the sole approved AIDS drug), lack of access to experimental compounds, and placebo-controlled clinical trials in which some participants received no treatment.

Police took away a protester at an ACT UP/New York demonstration in 1989. (Photo: Rex Wockner)

The group's stylistic flair, eye-catching graphics, and savvy use of media garnered widespread attention, and ACT UP chapters soon sprang up across the United States and in other countries.

Many of ACT UP's largest protests were aimed at the Food and Drug Administration and the National Institutes of Health. Presidents from Ronald Reagan through George Bush felt the group's wrath. The Catholic Church was a frequent target due to its homophobic policies and opposition to condom use. Memorable actions included disrupting a CBS Evening News broadcast to protest the first Gulf War, draping a giant condom over Senator Jesse Helms's (R-North Carolina) house, and depositing the corpse of a person with AIDS on the White House lawn.

"ACT UP's greatest accomplishment was shaming the country and two Republican presidents to dramatically increase the NIH AIDS research budget," said Peter Staley, who was handed a flier about the first demo while working on Wall Street, saw it on the national news that night, and showed up for the next ACT UP meeting. "Those billions of dollars spent on basic research led to the treatment breakthroughs we take for granted today."

Locally, ACT UP had a more fraught history. ACT UP/San Francisco started not long after the New York group, building on earlier activist efforts such as the AIDS/ARC vigil at Civic Center Plaza.

Following a rousing week of actions at the sixth International AIDS Conference in June 1990, the group split in the fall as advocates who wanted to focus on HIV treatment rather than a broad social justice agenda formed ACT UP/Golden Gate (later renamed Survive AIDS).

The original ACT UP/SF dwindled in numbers and within a few years became dominated by AIDS dissidents, who at first promoted unorthodox treatments and later denied that HIV was the cause of AIDS and discouraged use of antiretroviral drugs.

By the late 1990s, many ACT UP veterans had been lost to AIDS, effective new treatments began to restore health and allow HIV-positive people to resume normal lives, many activists had joined AIDS service organizations, and having a Democrat in the White House encouraged an "insider" strategy.

The focus of AIDS activism shifted overseas, with efforts to help poor people in Africa and elsewhere gain access to the drugs that had transformed the epidemic in high-income countries. But some activists kept their focus on the domestic side, fighting for funding and services for marginalized people with HIV in the U.S.

Lasting legacy

Today ACT UP is widely acknowledged for bringing back militant street activism and for its skillful use of art and media. Sociologist Benjamin Shepard and others have cited ACT UP as an influence for the global justice movement �" best known for the "Battle of Seattle" World Trade Organization protests in 1999 �" and this influence continues with today's Occupy movement.

"In 1993 when I was 19 I moved to [New York] city and found ACT UP," recalled Amanda Ream, a union organizer who works with Pride at Work and Occupy Oakland. "I learned how to take personal risks in ACT UP, and that when you are willing to put your personal comfort level on the line, and do the thing that is the hardest but the most urgent and necessary, that's when you win."

"ACT UP was community driven �" what it became in the world was the sum of the people who were in it: creative, smart and fighting for their lives," said Cyd Nova, who with Ream is helping organize a commemorative protest next month. "Now, the representation of HIV/AIDS has become the territory of non-government organizations and pharmaceutical companies. We have lost a culture where communities affected by HIV were part of vibrant grassroots movement, where they could funnel their love and their rage toward demanding governmental action and social change. This is what we hope to re-inspire on April 6."

ACT UP's success can be attributed to the single-minded focus of desperate people trying to save their own lives and those of their friends and lovers, coupled with the experience and know-how of seasoned activists from the feminist and gay liberation movements.

"People felt they had the power to change things, and it gave people who were facing death something to do to fight for their lives," John Iversen, founder of ACT UP/East Bay, told the B.A.R.

"One of the results of AIDS was that it brought lesbians together with gay men, and that's something I am so proud to have been part of," said longtime activist Kate Raphael. "When so many activist dykes began putting more of our energy into the LGBT and AIDS movements, and less into the women's movement, it helped to radicalize queer movements and, I think, hastened the decline of the more radical strands of feminism."

Despite its radical image, ACT UP's goals were largely reformist. On the whole, it did not seek to overthrow the state or abolish capitalism, but instead demanded that government and industry respect and meet the needs of people with AIDS.

As an advocacy movement, ACT UP is credited with lasting changes in the way new drugs are developed, clinical trials are conducted, and health care providers relate to patients. As an identity movement, it contributed to changing attitudes and increased acceptance of LGBT people.

"Every treatment for HIV/AIDS exists because gay activists, almost all from ACT UP and Project Inform, fought for them," Kramer told the B.A.R. "This should stand as one of the great examples of what the gay population can achieve when they want something badly enough."

But the larger vision that was also central to ACT UP �" an egalitarian society with economic justice for all and freedom from discrimination and oppression �" remains the goal of a new wave of activists.

"We did make enormous changes and brought medications to millions, but the struggle against greed, ignorance, and stupidity continues to this day," said Carter. "ACT UP and Occupy must unite to bring economic justice �" which means, among other things, health care for every human as a right �" in order to exert the lasting systemic changes that are so necessary at this point in human history."


The 25th anniversary of ACT UP's founding has inspired various commemorations in the days ahead.

Two documentaries about ACT UP, David France's How to Survive a Plague, which premiered at Sundance, and Jim Hubbard and Sarah Schulman's United In Anger , which debuted recently at New York's Museum of Modern Art, are expected to be shown in San Francisco later this year.

The GLBT History Museum in the Castro last week unveiled a new exhibit, Life and Death in Black and White, showcasing photographs of early AIDS activism in San Francisco.

A panel discussion about ACT UP's legacy and lessons for contemporary activism will take place this Saturday, March 24, at 5 p.m. at the Women's Building, 3543 18th Street.

Finally, an anniversary protest on April 6 will bring the ACT UP spirit to bear on current struggles including gentrification and evictions, criminalization of sex workers, and the Catholic Church's continued oppression of LGBT people and opposition to reproductive rights. The action will start at 4 p.m. at the 16th Street BART plaza, ending at 6 at Castro and Market streets.