Iris Long

Background: Iris is a 55 year old white, married, straight woman who grew up in New York City, went to Washington Irving High School in Manhattan, then majored in chemistry at Hunter College. She then went to graduate school at night at Hunter to get her master’s degree in chemistry. She worked as an organic chemist at Columbia Presbyterian Hospital, then Sloan-Kettering doing research on cancer drugs. Some of the drugs she researched in the 1960s -- nucleosides -- are now the most promising drugs for treatment of HIV (like AZT). She got her Ph.D. at the University of Connecticut in the Department of Pharmacy in the early 1970s, again working on nucleosides. She had some science jobs after that, but had stopped working by the time she began hearing about AIDS treatment research in the 1980s. Drug companies and hospitals did not work with volunteers on treatment research, so when Iris wanted to get involved she approached AIDS organizations, which led her to ACT UP. She lives in Queens.

Role in ACT UP: As the only person in ACT UP who was a scientist with experience studying drugs and understanding how drug companies work, Iris is a highly-valued member of the Treatment and Data Committee. It is difficult to overemphasize just what an anomaly Iris was in ACT UP (an older, straight, married, soft-spoken chemist who didn’t know any gay people before she came to ACT UP).  

Groups/friends at the meeting: Treatment and Data Committee

Specific tasks at the March 13, 1989 meeting: Iris is on the agenda to give part of the Treatment and Data Committee report discussing aerosolized pentamidine. Aerosolized pentamidine is cheap, and doctors have known since 1986 that aerosolized pentamidine is the best treatment to prevent PCP (pneumocystis carinii pneumonia), which is the leading cause of death by far for people with AIDS. But the FDA did not devote resources to study the drug for years, and by the time they did it was impossible to conduct placebo-controlled trials because everyone knew it was the best treatment so it would have been unethical to put anyone on the placebo. Since it is not FDA approved, it is not covered by many insurances. But New York Medicaid will now cover this treatment. This is not being publicized, so people should talk to their doctors about whether this treatment could be helpful for them, and tell other people they know to do the same. Here is a link to a recent news article.

Additional information: https://actuporalhistory.org/numerical-interviews/026-iris-long