The first-ever time anyone managed to interrupt the start of business on Wall Street was on September 14, 1989. Members of the AIDS Coalition to Unleash Progress (ACT UP) used miniature foghorns to drown out the opening bell, chained themselves to the VIP balcony, and showered traders in fake $100 bills. Outside, hundreds of people protested the absence of accessible medications for HIV/AIDS patients. They demanded that Burroughs Wellcome, a pharmaceutical company that manufactured the drug AZT, which at the time was the only treatment approved for people with AIDS, reduce the cost. A few days later, the company lowered the price of AZT by 20%.
ACT UP is an activist movement born out of the crisis of the HIV/AIDS epidemic. In the face of deep-seated homophobia and indifferent federal and state governments, its members have relied on civil disobedience and protests to win sympathy from the public and goad recalcitrant officials into action. ACT UP has gone after pharmaceutical companies, championed harm-reduction policies, and fought to repeal discriminatory policies and ordinances that target women and the LGBTQ+ community.
Sarah Schulman, one of the early members of ACT UP New York and a historian of the movement, says the organization succeeded because it worked across lines of class, race, and gender. “In America, change gets made by coalition….," Schulman tells Teen Vogue. "Different kinds of people acting in different ways that resonate with each other is what creates change in this country.”
We look back at this movement and how it emerged, as well as the lessons it holds for us today.
HIV/AIDS, as it came to be known, was first reported on by the Centers for Disease Control and Prevention (CDC) in June 1981, when five young gay men in Los Angeles were found to have the same rare lung infection, along with other unusual infections. In reality, HIV/AIDS had been in circulation for some time before that; the earliest known verified result, in an unidentified person from the Democratic Republic of the Congo, dates back to 1959. But according to the CDC, the disease may date back to the 1800s, when the simian immunodeficiency virus that infected certain chimpanzees likely jumped to humans in Central Africa, probably after the human consumption of the primates’ meat and interaction with their infected blood. The disease circulated within Africa for decades, slowly making its way into Europe and the Americas. According to research cited in The New York Times, by 1967 the strain soon to be responsible for most infections in the US was circulating in Haiti, and from there made its way to New York City.
HIV infection progresses in stages, eventually causing acquired immunodeficiency syndrome (AIDS). But the process can take years, allowing the disease to spread unbeknownst to the medical community. Once infected, people go through a phase of brief, acute illness when helper T-Cells, which assist in fighting pathogens, are destroyed. The virus then stabilizes before entering a longer, chronic period when helper T-Cell counts continue to decrease, resulting in lowered immune function.
Over a period of years, this weakened immune system causes bodies to fall prey to “opportunistic” fungal, viral, bacterial, and parasitic infections that are rarely seen in healthier people. These include conditions like Kaposi's sarcoma, a cancer which causes lesions to appear throughout the body. Without treatment to control the virus, death from any number of opportunistic infections is inevitable.
After the initial June 1981 CDC report, isolated clusters of unusual infections were identified across the US, with a total of 337 cases of severe immunodeficiency counted by the end of the year; more than a third of those patients had already died. The clusters were heavily concentrated among gay and bisexual men. By 1982, the CDC used the term AIDS for the illness, and in 1984, a retrovirus first labeled HTLV-III was announced as the disease’s underlying cause.
Recognition of this epidemic by some in the medical community was not matched by action or support from the federal government — or from civil society. Pointedly, President Ronald Reagan did not mention AIDS in public until 1985, at which point HIV/AIDS was spreading rapidly. Weeks later, Rock Hudson, one of Reagan’s close friends from his acting days, died from the disease. By the end of the year, AIDS has already killed more than 12,000 Americans. Still, Reagan did not acknowledge AIDS as a public health emergency until 1987, and he maintained that sexual abstinence was the best way to prevent the disease.
Public opinion polls showed that 44% of Americans, out of fear of catching the virus, either avoided places where they believed gay men congregated or knew someone who did; 33% expressed support for firing people for having the disease. Misinformation about the virus was rampant, such as the belief that it could be spread through saliva. Even in nominally liberal cities like New York, Mayor Ed Koch refused to treat the crisis as a crisis. The result was silence as a growing number of people became sick and died.
HIV/AIDS patients were incredibly stigmatized and often met terrible ends. Kaposi’s sarcoma left visible tumors on the skin, a marker of the illness that further isolated patients from the public. As the sickness worsened, the suffering could be excruciating as patients dealt with concurrent infections. People wasted away as their metabolism changed and appetites declined; in later stages, dementia and blindness were common.
The fact that the manifestations of the illness were so terrible made the related bigotry worse. One case, in Florida, involved three children with hemophilia who became HIV-positive after exposure to contaminated clotting factors: Their house burned down under suspicious circumstances and the children received death threats.
There were few, if any, social services available to people with the disease — and a host of laws that discriminated against them. Says ACT UP's Schulman, “In New York City, you had no discrimination protection at all, so a queer person could be fired from their job or lose their apartment or be denied public accommodation.” Members of the military who tested positive were summarily discharged, and some states enacted HIV criminalization statutes for things that often posed little-to-no transmission risk, such as biting.
“Familial homophobia was virulent and a cultural norm,” Schulman continues, "and street violence by the police and by straight people was a form of public entertainment. That was the environment into which AIDS arrived.”
The LGBTQ+ community was left to its own devices and had to create its own supports. In 1982, the Gay Men’s Health Crisis (GMHC) in New York was founded to raise money for research into the disease and to provide information for the community. The organization grew into a social services provider, and, over time, started working with other communities that were suffering from the disease: people who had received blood transfusions, intravenous drug users, and women. But the GMHC was eventually criticized by people in the community, such as Larry Kramer, one of its founders, for not taking radical enough action to raise public awareness about the disease.
The organizers behind ACT UP New York wanted to take a different approach. Established on March 12, 1987 as a political action group, ACT UP’s focus would not be on raising funds or providing care, but using direct action and civil disobedience to highlight the failures of society and the political system to care for people with HIV/AIDS. The organization was primarily made up of gay men, but Schulman notes that “many of the younger men had no experience, whereas the women, and especially Latinos, came in with a lot more experience than the white men, because they came from previous movements. Their numbers were smaller, but their impact was quite large.”
First and foremost, access to treatment was needed, because without treatment HIV was a death sentence. AZT — originally created as a chemotherapy drug in the 1960s before being shelved because of inefficacy against cancer — was the first treatment shown to limit the disease. It was controversial for several reasons, including that it was sometimes prescribed at dosages found to be dangerous and its highly prohibitive cost: what would be close to $20,000 a year today. ACT UP staged multiple protests on Wall Street to target AZT’s manufacturer and accuse them of profiting off of suffering people.
ACT UP activists also fought to establish new rules for drug trials. The group successfully convinced the Food and Drug Administration to expand access to trials for people who were life-threateningly ill. “At that time, women were banned from experimental drug trials," Schulman explains, "…but when there’s no treatment, those are the only treatments, so women could not get treatment or benefits. ACT UP spent four years forcing that change, and we did win that.”
ACT UP also had a cutting sense of humor. North Carolina Senator Jesse Helms, an outspoken homophobe, blocked funding for HIV/AIDS education and research and sponsored a rule prohibiting visas for people with HIV/AIDS. In 1991, ACT UP-affiliated members inflated an enormous condom over the senator's house.
Other chapters had their own specific backgrounds and orientations. Joseph Plaster, an archivist and creator of the San Francisco ACT UP Oral History Project, tells Teen Vogue that members “emerged through a lot of different organizations that were led by queer radicals who had been involved in progressive political movements for decades: people who had been involved in gay liberation, in Central American solidarity movements….” Other chapters, like ACT UP Boston, pressured insurance companies to pay for treatment of the disease.
In 1996, with the wide availability of highly active antiretroviral therapy, or HAART, the worst effects of the AIDS epidemic receded in the Global North. With treatment, patients could survive for decades with the disease. This took some of the urgency away from ACT UP’s work, but individual chapters, like New York, are still active today.
Meanwhile, the Global South has had to confront an epidemic of shocking proportions: About 12% of South Africa’s population is HIV-positive. There, movements like the Treatment Action Campaign have drawn some inspiration from ACT UP New York.
What lessons can we learn from ACT UP? Says Schulman, “The most important takeaway is that ACT UP was not a consensus-based movement. By that I mean people did not have to agree in order to do things. It had a bottom line, and every movement has to have a bottom line, and theirs was a one-line statement of unity: ‘direct action to end the AIDS crisis.’”
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