“Act Up, Fight Back, Fight AIDS!” The angry chanting grew louder as hundreds of protesters wove through the usually placid campus of the National Institutes of Health in Bethesda on May 21, 1990.
ACT UP’s “Storm the NIH” had begun.
“It was spectacular,” Mark Harrington, a leading member of the group, remembered in a phone interview.
As confused NIH scientists and administrators looked out of their windows, the 1,000-strong demonstration then marched to Building 31, which housed the offices of the protests’ target: Anthony S. Fauci, then and now the chief of the National Institute of Allergy and Infectious Diseases (NIAID).
For months, ACT UP had been formally urging Fauci to include their members in the government’s development process for AIDS drugs. Fauci, now under attack by some Trump supporters for his response to the coronavirus pandemic, was in favor of the group’s participation.
“I was trying to get them into all the planning meetings for the clinical trials,” Fauci said last week, taking time out from the coronavirus fight to look back at another deadly disease he managed 30 years ago. But he met increasing resistance from the scientific community, who were put off by ACT UP’s tactics.
“We were putting Tony in a tough spot,” acknowledged Peter Staley, the ACT UP leader who spearheaded the protest.
ACT UP had formed in New York City in 1987 as an angry response to government inaction on finding drugs and treatments for AIDS patients. The group was motivated by rage, helplessness and grief, Harrington said, as they stood by and watched thousands of friends and lovers die of the human immunodeficiency virus that led to AIDS — what was then called a “gay plague.”
As more and more gay men died in the mid-1980s, and homophobia flourished, ACT UP staged theatrical protests at the Food and Drug Administration, on Wall Street and at New York’s City Hall. The most famous was a 1989 die-in at St. Patrick’s Cathedral in New York to protest then-Cardinal John O’Connor’s opposition to teaching safe sex and distributing condoms.
The “Storm the NIH” protest was the culmination of the group’s public demonstrations about the deadly disease.
“We wanted a seat at the table,” Staley said, and for months before the protest pushed to have ACT UP organizers become voting members on all the scientific committees that set the research agenda at NIAID.
“One of the things that people in ACT UP said is that we are the people who are experiencing this novel disease, and we are the experts, not just the scientists and doctors,” said Garance Ruta, executive director of GEN magazine and an ACT UP member who was at the NIH protest.
The NIH demonstration also advocated for the group’s quest to reduce the dose and price of the only AIDS-fighting drug approved by the FDA at the time, AZT, made by Burroughs Wellcome Co.
“At $8,000 a year for users, AZT is said to be the most expensive prescription drug in history,” read a New York Times column in August 1989. The column also pointed out that about 35 percent of AIDS patients had either no health insurance or policies that did not pay for drugs.
Fauci was one of the younger scientists working on AIDS research at NIAID at the time, and Staley said ACT UP members began to get to know him. “All the older scientists thought we were crazy,” he said. “But Fauci wanted to hear what we had to say.”
“We liked Tony personally. He’s a brilliant scientist, a brilliant fighter of epidemics,” Staley said.
“I was becoming friends with some of them, like Peter Staley and Mark Harrington,” Fauci agreed. “I felt very strongly that we needed to get them into the planning process because they weren’t always right, but they had very, very good input.”
Fauci attended an ACT UP meeting in October 1989. After that, some of the group’s leaders on its Treatment and Data Committee would meet the NIAID chief and his deputy, Jim Hill, for dinner at Hill’s townhouse on Capitol Hill.
Fauci said he urged the scientific community and his own staff to include ACT UP members in the drug trial process. “I was pushing and pulling these people and screaming, ‘Hey, we have to deal with them,’ ” he said. “I was in a difficult position because I was trying to convince the establishment that ACT UP had something to offer.”
Fauci promised NIAID would become more inclusive, but after months with no action, ACT UP decided the only choice they had was a protest, Harrington said.
At a dinner with Fauci in March, Staley said, “Tony, we’ve got some bad news for you. We know you’ve been advocating for us on this. But we’ve decided to do a gigantic demonstration at the NIH, and it will be in front of your building.”
Fauci tried to talk them out of it, but Staley vowed not just to demonstrate, but to get arrested, too, according to Fauci.
Between March and May, ACT UP spread the word about “Storm the NIH” to its chapters across the country. The group took out full-page ads in The Washington Post.
ACT UP was renowned for creating what Staley called a six-ring circus at its demonstrations, and the NIH protest was no different. Gathering at the NIH gates that Monday morning in May, chapters were divided into “affinity groups,” each of which organized its own presentation, skit or protest focus.
“All the affinity groups gave themselves campy names, like CHER!, the Juicers or the Marys,” Staley explained. “I was in charge of a group called the Power Tools.”
A movie he saw featuring military pyrotechnics made him think about using colored smoke. He looked through a military magazine and learned smoke bombs in the shape of grenades were available in different colors. “I ordered all the colors of the rainbow, thinking, ‘That will make a statement,’ ” he said.
The day of the demonstration, he and Power Tools members taped the canisters to poles and hid them behind posters to get on campus.
Staley’s group stayed behind the bulk of the protesters, who marched ahead to confront about 200 police officers, some on horseback, who were clubbing some activists. Others set up a mock graveyard in front of Building 31, with tombstones describing deaths from “drug profiteers” or “AZT poisoning.”
Chanting, “NIH, you can’t hide, we charge you with genocide,” according to United Press International, affinity groups carried banners, posters, mock coffins, and effigies — including one of Fauci. One group staged a die-in. Another formed a human snake that slid its way through the raucous crowd, each section labeled with a different opportunistic AIDS infection.
“One guy even had Fauci’s head on a stick,” Staley said.
It might have seemed otherwise, “but this was not a protest against research,” Ruta said. “It was a protest on behalf of research.”
Staley and his crew lit the smoke bombs and ran through the parting crowd. A roar went up from protesters as billows of red, yellow, blue, purple and green smoke filled the air. An Associated Press photo of screaming activists under a cloud of rainbow smoke eventually made it onto the cover of newspapers across the country.
Meanwhile, Fauci, looking out his office window, grew frustrated. “I didn’t like that degree of disruption on campus,” he said, concerned the rowdy action would further alienate scientists from including ACT UP in the drug development process.
Then Fauci noticed a protester climbing onto the building’s front overhang. It was Peter Staley. Police officers pulled Staley off the roof, lowering him into a band of officers who immediately handcuffed him. Fauci said he raced down to the first floor to make sure Peter was okay.
“I didn’t want him to get hurt because there were mounted police and that could be dangerous,” he said.
“A big, burly African American cop dragged me through the first floor of the building, and who should I run into, but Tony Fauci,” Staley said.
“Peter?” Fauci said.
“Hey, Tony,” Staley responded with a grin.
“Are you guys okay?” Fauci asked.
Staley laughed. “See — I told you I’d get arrested,” he said, adding, “I’m just doing my job,” surprising the officer that his perpetrator knew the head of the institute.
Staley was the first arrest of the day, he said, with about 80 more arrests following, according to The Post.
In The Post story, Fauci was critical of the protest, expressing concern that it could hurt AIDS researchers’ morale.
“It was interesting theater,” Fauci said at the time, “but it was not helpful.”
The next day, The Post’s editorial page accused the group of harassing NIH scientists.
The next month, however, ACT UP could definitively declare victory. At the International Conference on AIDS in San Francisco, Fauci gave Harrington the good news: Activists, journalists and people with AIDS would be let into the AIDS Clinical Trials Group, Harrington said, and the trials would expand to include women of color, drug users and children.
It was a turning point — for both ACT UP and biomedical research, Harrington said.
All drug testing committees at NIH now have patient advocates, he noted, including NIH’s trial to test hydroxychloroquine and azythromicin.
Staley points out that community activists are now involved in coordinating efforts to combat covid-19, an outgrowth of ACT UP. Activists “are now in lockstep with scientists,” he said.
“Ever since the 1990 demonstration, we’ve been partners in fighting illnesses and diseases, and our enemies now are hesitant politicians and anti-science radio hosts,” he said. “We are now Fauci’s great defenders against the anti-science. And the world is better for it.”
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