ACT UP changed face of AIDS

  • Wednesday March 21, 2012
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ACT UP changed face of AIDS

Twenty-five years ago this week, the AIDS Coalition to Unleash Power announced itself to the world by holding a demonstration on Wall Street in New York City, which changed not only the face of AIDS activism, but also the federal government's response to diseases and nonprofits' engagement with the public and the government to help their own missions.

Gay playwright Larry Kramer was the inspiration for ACT UP, and the protest on Wall Street, the financial capital of the world, held March 24, 1987, demanded greater access to experimental AIDS drugs and protested profiteering by the pharmaceutical companies. Keep in mind that at the time only AZT (manufactured by Burroughs Wellcome) was available and it wasn't very good; it wasn't effective and the side effects were brutal. According to ACT UP/New York's website, shortly after this action, the federal Food and Drug Administration announced that it would shorten its drug approval process by two years. It was a major victory and a turning point.

In fact, a quick search through ACT UP/New York's capsule history on its website details numerous protests, many of which resulted in policy reversals by various agencies or social changes in the national culture, such as reporting by the New York Times.

Before long, chapters were formed in other cities, including San Francisco, the East Bay, and Philadelphia. A 1988 action that focused on nine days of protests against various unattended aspects of AIDS – IV drug use, homophobia, women, people of color, testing programs, and more – occurred in more than 50 cities. It was an example of direct action at its best: specific goals, focused demonstrations, and media attention.

One of the most important protests was in 1990, when ACT UP "zapped" the National Institutes of Health campus outside Washington. An estimated 1,000 activists from across the country demanded more AIDS treatments for the opportunistic infections that were killing people, the inclusion of more women and people of color in clinical trials, and the formation of a women's health committee in the AIDS clinical trial system at the NIH.

ACT UP accomplished many of its goals: clinical trials were changed and drug approval was accelerated. Decision-makers took notice, as did companies when they were zapped.

Locally, ACT UP/San Francisco eventually splintered into two groups, one with its traditional focus on treatment and clinical trials (Golden Gate), the other taken over by AIDS denialists, most of whom are now dead (SF). Before it was disbanded, ACT UP/Golden Gate could be counted on to speak up when medical centers weren't providing acceptable treatment or when funding cuts threatened HIV/AIDS service organizations. Many ACT UP members, like the late Jeff Getty, refused to sit by quietly and watch friends die and their own health decline. Members of ACT UP were instrumental in getting the drug companies to change their ad imagery by criticizing glamorized ad campaigns that featured good-looking, athletic men climbing mountains, when in reality many people taking the drugs were stuck on a toilet with diarrhea.

Today, more than 30 years after the first reported AIDS cases, a lot has changed. New drugs are more effective and less toxic, though side effects remain an issue. AIDS nonprofits have mostly expanded their donor bases so that they don't depend as much on government funding. Today many groups employ ACT UP's tactics to demand accountability from organizations and funding from the government for research and treatment of various diseases.

ACT UP may not be as active as it was 25 years ago, but it forever changed the way the general public sees people living with AIDS, and while there was often a lot of screaming and shouting, PWAs were fighting for their lives – and still are.