Iris Long, a chemist whose knowledge of the intricacies of pharmaceutical clinical trials and the Food and Drug Administration’s approval process made her a transformational figure in ACT UP, the militant political action group dedicated to ending the AIDS crisis, died on April 4 in Astoria, Queens. She was 92.
Michael Long, her husband of 55 years and only immediate survivor, confirmed her death, at a rehabilitation center. She lived in Astoria.
By 1987, when Dr. Long first attended a meeting of ACT UP, the AIDS Coalition to Unleash Power, she had retired from her work as an organic chemist. She was looking to help people directly, rather than in a laboratory. She was not politically active, didn’t know anyone with AIDS and wasn’t even sure she had ever met anyone who was gay.
“God, the epidemic was getting so bad, and she thought she could help,” Jim Eigo, a writer and leading ACT UP member who worked closely with Dr. Long, said in an interview. “We were a bunch of downtown queers, and she came from a background that was totally different from us. She brought her love to us.”
At that first meeting, Dr. Long realized that the activists needed a guide who was fluent in science to help them expedite the approval of drugs to treat AIDS and the H.I.V. virus that causes it.
“She was their scientific North Star,” Dr. Anthony S. Fauci, the former director of the National Institute of Allergy and Infectious Diseases, said in an interview. “She told them that if you’re going to interact with the scientific community, you’re going to have to understand the science.”
She tutored the activists on immunology and virology and schooled them in the intricacies of the Food and Drug Administration’s approval process and pharmaceutical research protocols. She set up what became ACT UP’s treatment and data committee, and with Mr. Eigo wrote memos to drug companies and government agencies suggesting programs that would benefit people with H.I.V. and AIDS.
Her guidance, Mr. Eigo said, empowered key ACT UP members, including Mark Harrington, to communicate with researchers and officials at the F.D.A. and other government agencies on a more equal, and therefore less confrontational, footing.
“They became so expert,” said Peter Staley, a prominent member of ACT UP, “that I witnessed some shocking conversations between Mark Harrington and Fauci talking about his lab work, and Fauci would just look stunned by Mark’s questions.”
Mr. Harrington said in an interview that Dr. Long “took much younger, nonscientific people into her world.”
“She was relentless, and very focused on getting good information to the people who needed it,” he said.
Dr. Long, Mr. Eigo and Garry Kleinman, another ACT UP member, made a presentation to New York University doctors who were conducting clinical trials for AIDS drugs. The meeting soon led the F.D.A. to adopt parallel drug trials — with the result that patients who had exhausted azidothymidine, or AZT, the first drug approved to treat AIDS, could now take another drug (initially ganciclovir) that had passed the agency’s safety trials even while it was still being tested for effectiveness.
On another front, Dr. Long filled a critical void by creating the AIDS Treatment Registry, a regularly updated list of where drug trials were being conducted at hospitals in New York City, so that those who needed treatment would know where to go.
“No one knows how many drugs are being tested that could be used to treat the disease,” she told The New York Times in 1988. “What I have done is to find out the names of those doing research at various institutions. It’s hit and miss. I call the doctors, identifying myself as Dr. Long, and question them about what they are doing and what is going on in their institutions.”
She also documented how few women were in federally sponsored clinical trials for AIDS drugs. As of February 1990, there were just 546 women enrolled in the trials, compared with 8,263 men.
That was significant, she told The San Francisco Chronicle, because “the clinical trials are the only way you can get treatment.”
Dr. Long, who participated in some of ACT UP’s protests but was not among the activists who were arrested, was named one of Glamour magazine’s 12 most inspiring women of 1989.
Iris Lillian Doerr was born on Dec. 8, 1933, in Manhattan. Her father, Henry, owned a butcher shop, and her mother, Lillian (Wildberger) Doerr, helped out in the store and briefly owned a dry-cleaning business.
A high school chemistry course inspired Dr. Long to study the subject at Hunter College, where she earned bachelor’s and master’s degrees in 1955 and 1964. In 1972, she earned a Ph.D. in organic chemistry from the University of Connecticut. She went on to work at Memorial Sloan Kettering Cancer Center, Long Island Jewish Medical Center and Stony Brook University.
By the time she showed up at the ACT UP meeting, Dr. Long had already begun volunteering at Gay Men’s Health Crisis (now GMHC), the nonprofit dedicated to eliminating AIDS.
“With her suburban bob, she cut a figure that might have been perfectly ordinary on the subway, but not in this room, packed with fashion-conscious men and women,” David France wrote in “How to Survive a Plague: The Story of How Activists and Scientists Tamed AIDS” (2016). “Everything about her pointed to the fact that she was a working-class, middle-aged heterosexual woman — a platypus among the swans.”
But Dr. Long knew that her background could be useful to the group. Her research had focused on a class of antiretroviral drugs called nucleoside analogues — altered sugar molecules trained to lure diseased cells away from healthy cells — of which AZT was one.
“She fully recognized that this would be one of the biggest epidemics in the history of mankind, and that not enough people were stepping up,” Mr. Staley said.
At an early meeting, Dr. Long was speaking to a large group that was growing restless with her presentation. She was not a gifted speaker — although she was better in small groups — but the activist Vito Russo rose to her defense.
“Shut up and listen!” he shouted, according to Mr. France’s book. “Listen! I don’t think any of you paid Iris Long the respect you should. There is no one doing any work in ACT UP that has a greater chance of doing real good for people with AIDS.”
That work would be her mission for almost a decade.
“She gave her life over to us,” Mr. Eigo said. “We were being rebuffed by society at large at that time, and she came in, giving us her time and expertise.”
It represented a momentous shift in her life.
“I was always a laboratory person, and now, interacting with people, it was completely different and something I had never done before,” she told the ACT UP Oral History Project in 2003. “I was not a joiner before, at all. But I was a fighter-type person that would fight for somebody’s rights.”
Sheryl Gay Stolberg contributed reporting.
Richard Sandomir, an obituaries reporter, has been writing for The Times for more than three decades.
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