Jesse Milan, who has been an advocate for people living with HIV and AIDS for more than 30 years, said that one memory from 1992 has returned to him repeatedly over the course of his work and continues to inspire him — especially when people mention the activist group AIDS Coalition to Unleash Power.
By 1992, nearly 203,000 people had died from the disease, including Milan’s partner. Milan was the chair of the Ryan White Planning Council in Philadelphia, which allocates funding for HIV care and prevention services.
Whenever someone mentions ACT UP — which was formed in New York City in 1987 — “immediately what comes to mind is me sitting at the head of a table of a Ryan White Planning Council meeting with a vocal leader of ACT UP standing in front, pointing their finger at me directing that we should do more,” said Milan, who is now president and CEO of the national organization AIDS United, which fights to end the HIV epidemic. “I will never forget it. That’s how important ACT UP has been in holding people accountable for the work that we need to do. That image informs and inspires and guides me all the time.”
The vocal leader pointing his finger was JD Davids, an advocate and writer. Milan, who has also been living with HIV for 39 years, said he and Davids continue to be colleagues and fellow advocates.
“Just because you were held accountable and just because we were being urged to do more does not mean that we ever view those as negative,” he said, adding that, in fact, many public health and government officials appreciated that ACT UP brought the direct perspectives of people living with HIV.
ACT UP formed out of the collective anger people felt in response to a lack of government action to address the AIDS crisis. The organization, led mostly by queer people, has come to have a worldwide impact on science, health care and how people organize to demand change.
‘Transformed’ how queer people saw themselves
On March 10, 1987, gay activist and playwright Larry Kramer gave a speech at the Lesbian and Gay Community Center in Manhattan and called for the creation of an AIDS activist group, according to ACT UP’s website. Two days later, more than 300 people showed up to a meeting to create ACT UP, which is now known as ACT UP New York. There were 148 chapters worldwide at its peak.
One member of the New York chapter, Ann Northrop, described the group at a meeting in November 1989 as a “diverse, nonpartisan group of individuals united in anger and committed to direct action to end the AIDS crisis,” Rolling Stone reported at the time.
The organization became nationally known for its large demonstrations. For example, in September 1989, seven members of ACT UP infiltrated the New York Stock Exchange and chained themselves to the VIP balcony. They released a banner that read, “SELL WELLCOME,” which specifically targeted Burroughs Wellcome Co., a pharmaceutical company that sold AZT, the only approved drug for AIDS at the time. ACT UP demanded that the company drop the price of the drug — which cost $8,000 a year at the time — by 25 percent. Four days later, the company reduced the price by 20 percent, to about $6,400.
And that was just one of ACT UP’s many achievements, according to Sarah Schulman, a journalist who was a member of ACT UP from 1987 to 1992 and authored the book “Let the Record Show: A Political History of ACT UP New York, 1987-1993,” which came out earlier this year.
The group forced the pharmaceutical industry and scientists to change how they researched medications to prioritize the needs of people living with AIDS “instead of trying to get the largest market share,” she said. It also forced the Food and Drug Administration to make experimental drugs available to people who needed them, even if the drugs had not gone through an approval process. After a four-year campaign, it pushed the Centers for Disease Control and Prevention and the Social Security Administration to change the definition of AIDS so that women with AIDS could access benefits and get into experimental drug trials. It also removed HIV as a pre-existing condition for private insurance, which Schulman noted suddenly made it available to up to 500,000 additional people.
In New York City, specifically, ACT UP succeeded in a campaign to make needle exchange legal, and it started Housing Works for people living with AIDS who were experiencing homelessness.
“I guess you could say that ACT UP really transformed the way that people with AIDS and queer people saw themselves and were received by the general public,” Schulman said.
Mark Harrington, who joined ACT UP in 1988, was a member of its treatment and data team, which helped create “parallel track,” which allowed 35,000 people to get access to an AIDS drug before it was approved.
That achievement, among others, shows that ordinary people “have a right to participate in science, have the ability to make tremendous changes in the way that research and policy is done in this country and elsewhere around the world,” Harrington said. Harrington and a group of ACT UP members left the organization in 1992 to create the Treatment Action Group, a research and policy think tank that is fighting to end HIV, tuberculosis and hepatitis C.
“By the time we left ACT UP, it already made a tremendous difference that I think set the foundation for the way the country and indeed many parts of the world have responded to HIV and even sometimes other pandemics,” Harrington said. He noted that, for example, much of the infrastructure that resulted in the Covid-19 vaccines was built on the architecture of AIDS vaccine research efforts of the last 30 years and epidemic outbreak work conducted at the National Institutes of Health.
‘Be relentless’
Milan said his work is informed not just by his personal experience with Davids in Philadelphia, but also by ACT UP’s collective impact on activism.
“ACT UP had a tremendous impact on galvanizing not only grassroots response, but demanding a national response to the epidemic, and they were fearless in approaching anyone in power who had an influence over what should be done, how it should be done and how it would be funded,” he said.
The group held officials and organizations accountable, “and we’re still holding officials and organizations accountable today,” he said. “And that’s part of the important legacy of ACT UP.”
ACT UP members used what they called the “inside-outside” strategy to force change, Harrington said, and it’s something many groups today continue to use, though not by name.
First, activists learn everything they can about the issues that are relevant to the area they want to change. Harrington said the treatment and data team learned everything it could about clinical trials, for example, and other groups did the same for issues related to housing, safe-sex education and needle exchanges.
Then they would come up with policy ideas around how to address those issues and meet with people in power to change policy. If those people refused a meeting or wouldn't give activists what they asked for, he said, they held nonviolent demonstrations and engaged the media.
“You may want to make a lot of noise about it and then you want to create basically conditions where the people who have the power to change the situation are more or less under a lot of pressure to listen to you, and then to get to know you and to start making the changes that you’re asking for,” Harrington said.
He added that, unfortunately, it can take years for research or policy to change the underlying conditions for people living with AIDS or any other illnesses. He pointed to New York City, which announced on Tuesday the first supervised drug injection sites to prevent overdoses.
“AIDS activists and harm reduction activists had been working on that for 30 years,” he said. “So it just happened yesterday, but it took 30 years to get a city anywhere in the U.S. to be able to have the political will to open it.”
He said oftentimes that means change comes too late for people like his friend Scott, who developed AIDS-related complex — a phrase that’s no longer used that describes symptoms that indicate HIV infection prior to developing AIDS. Scott was unemployed and uninsured, and Harrington joined ACT UP because he wasn’t sure how to help him. Scott died in 1991.
“He probably lived a little bit longer because of some of the early treatment advances that we made, but basically, it was too late for him, because the Reagan administration hadn’t done enough and they’d waited too long,” he said. “So there’s always a lot of losses along the way, and I guess the lesson is to keep at it, find some allies, get to know the issues. Try to get some allies inside of the policy and scientific communities, and be relentless.”
