ACT UP demonstration at National Institutes of Health. Protestors are holding signs with President Reagan's face, while another sign reads "Dr Fauci you are killing us."

How AIDS Activists Fought for Patients’ Rights

When President Reagan publicly acknowledged the AIDS epidemic in 1985, nearly ten thousand people in the U.S. had already died (CDCHIV). Four years after the first reported cases in the country and three years after the CDC put a name to the disease, Reagan’s acknowledgment was not out of sympathy but to defend his administration’s efforts against an epidemic that would take the lives of more than 100,000 people by 1990 (CDC). It was borne out of this indifference to the growing public health crisis that the AIDS Coalition to Unleash Power (ACT UP) formed in March 1987. 

Founded in New York City, ACT UP was a political direct action group that used civil disobedience to pressure officials, government agencies, pharmaceutical companies, and other institutions that stalled, ignored, or profited off the HIV/AIDS epidemic (ACT UP). Their AIDS activism helped accelerate research and treatment for the disease through in-your-face tactics and protests, including putting a giant condom over Sen. Jesse Helms’ house, scattering the ashes of deceased loved ones who had died of AIDS on the White House lawn, and die-ins. 


• Support organizations like VOCAL-KY and Housing Works helping unhoused people with or affected by HIV/AIDS.

Watch the interviews of the surviving members of ACT UP to learn more about the organization and the fight to end the AIDS epidemic.

• Read up on the history and stigma of the HIV/AIDS epidemic and how biased misinformation incite discrimination toward certain marginalized groups. 

Adopting the slogan “Silence = Death,” ACT UP knew that to get those in power and the media to care about a disease that was predominantly ravaging the gay community, they had to bring the ugly reality of AIDS to their doorstep and hold them as accomplices for their inaction. 

“They forced social and cultural institutions to take responsibility for the AIDS deaths by having to physically move the protesters’ bodies,” said Matt Brim, professor of queer studies at the City University of New York (History).

The AIDS epidemic during the 80s largely impacted gay men, sex workers, and IV drug users, all of whom were already cast aside by mainstream society and whose deaths were deemed inconsequential. 

This created a lot of stigma and isolation around gay men and people diagnosed with HIV and caused misconceptions about who could contract the virus. 

“So, if I’m dying from anything, I’m dying from homophobia. If I’m dying from anything, I’m dying from racism. If I’m dying from anything, it’s from indifference and red tape, because these are the things that are preventing an end to this crisis. If I’m dying from anything, I’m dying from Jesse Helms. If I’m dying from anything, I’m dying from the President of the United States. And, especially, if I’m dying from anything, I’m dying from the sensationalism of newspapers and magazines and television shows, which are interested in me, as a human interest story — only as long as I’m willing to be a helpless victim, but not if I’m fighting for my life. If I’m dying from anything, I’m dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a shit.”
                     – Vito Russo, “Why We Fight” speech in 1988 (ACT UP)

Led by founder, author, playwright, and co-founder of Gay Men’s Health Crisis Larry Kramer, the group’s first action on March 24, 1987, was on Wall Street, where they lay on the street demanding immediate action against the profiteering off of AIDS medicine by pharmaceutical companies, which made the drug unaffordable. ACT UP also demanded public education to stop the spread of HIV and policies to prohibit discrimination in AIDS treatment, insurance, employment, and housing (ACT UPHIV). They would go on to protest the FDA, the National Institutes of Health, presidents Bush Sr and Clinton, the Catholic Church, Mayors Koch and Giuliani, Governor Cuomo Sr., and health insurance companies. 

They were vocal about how slow and inefficient clinical trials and the drug approval system were and how AIDS patients were dying waiting for a cure. So they created an “inside-outside strategy,” which involved in-your-face demonstrations, forcing the decision-makers to listen (NPR). In October 1988, they held a die-in at the FDA’s building entrance with some protesters holding tombstone cutouts that read “Dead from lack of drugs” and “Victim of F.D.A. red tape.” Another group entered the building “wearing lab coats that were stained with bloody hands” (History). In May 1989, 1,000 protestors at the National Institutes of Health repeated the tactic. Each time, they were able to speak with officials and provide proposals, which led to the agencies offering more life-saving HIV treatments and the expansion of clinical trials to include more women and people of color (The New Yorker). 

ACT UP’s emphasis on patient care advocacy forced these government agencies to change how they test drugs, speeding up the process and involving patients in constructing the trials. Dr. Anthony Fauci, the head of the National Institute of Allergies and Infectious Diseases during the AIDS epidemic, credits Kramer (who once called Fauci a “murderer” before working alongside him) and ACT UP for changing the dynamics between activist communities and the scientific and regulatory communities relating to medical research and healthcare (Variety). 

Beyond the demonstrations, ACT UP members have provided direct community support, and many continue to organize. Four ACT UP members founded Housing Works in 1990 to support people living with HIV/AIDS while unhoused in NYC. Housing stability enables individuals to prioritize their health and decreases the spread of HIV (Housing Works). They also were integral in establishing the city’s needle-exchange programs (Duke Press).

ACT UP’s unapologetic actions kept the epidemic at the forefront, not only bringing attention to the shortcomings and discriminatory treatment of people with AIDS by the U.S. government but challenging misconceptions about the disease. While the devastation of the AIDS epidemic at its peak in the 80s can still be seen and felt today, so is the impact of the work and ferocity of ACT UP and other AIDS activists who were not content with being made invisible by a country set on their erasure and viral genocide.


• Government indifference allowed AIDS to grow into a global health emergency.

• The number of people who died from AIDS is undercounted due to the stigma surrounding the disease keeping people from reporting diagnosis. 

• ACT UP used civil disobedience to fight for HIV/AIDs patients’ rights.

1584 1032 Dominique Stewart

Dominique Stewart

Dominique is a writer and editor whose interests lie within the intersections of social justice and culture. She has written and edited for several outlets, including Brooklyn Magazine, The Tempest, and the Broward-Palm Beach New Times. Dominique was the managing editor for a women’s health magazine called Sidepiece Magazine.

All stories by : Dominique Stewart
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