“AIDS changed everything,” Larry Kramer once said. So he made it his life’s work to change how people perceived the disease, those living with it, and how medical research was done in the United States and around the world.
Kramer, an outspoken AIDS activist, died Wednesday morning at age 84.
STAT asked several people who knew, worked with, or were influenced by Kramer to share their stories about him.
Anthony Fauci: He called me a murderer. That got my attention
Tom Frieden: Larry was a force of nature
Margaret Hamburg: It was wonderful to see his generous side break through
Gregg Gonsalves: “The Normal Heart” mesmerized me
Harold Varmus: I had expected surliness, but instead got charm
Rick Berke: It was terrifying being the target of a Larry Kramer tirade
Larry Kramer and I have a long, complicated history that started off very confrontational and adversarial. I represented the federal government and was one of the few people in the early 1980s who was out there talking about HIV. And to Larry, in the beginning — and even to some extent up until the end — the federal government was the enemy that wasn’t giving enough, doing enough, using the bully pulpit to call attention.
He wrote an article to get my attention that was published on the front page of the San Francisco Examiner magazine section one Sunday with the title “An open letter to incompetent idiot Dr. Anthony Fauci: I call you a murderer.” It definitely got my attention.
Over time I started to listen to Larry and what he was saying, and realized that behind the iconoclastic behavior and behind the theatrics he had some important points to make about getting the community involved in understanding and contributing to the research agenda and clinical trials.
He was the lightning rod that drew the attention. But then he surrounded himself, wisely I think, with young people, the original ACT UP group. They were quite intellectual and really tried to understand how the community could contribute to both the research agenda and clinical trials.
What started off as an acquaintance became a friendship, and then became a really deep friendship. But even then he wouldn’t hesitate to do something outrageous to make a point.
One night we were both invited to be on the Ted Koppel “Nightline.” Ted is interviewing me and then he’s interviewing Larry and all of a sudden Larry starts trashing me. He says I’m a disgrace. That I’m doing this, and that I’m doing that. And I’m saying to myself, “What’s going on with Larry?” He made it look like we were mortal enemies.
About 15 minutes after I got home, the phone rang. It was Larry. He said, “That was really great, wasn’t it, Tony? We really did well.” I said, “What do you mean we did well?” He answered, “We made our point.” I said, “I know, Larry, but you called me a dirty rat in front of 10 million people on ‘Nightline.’”
He thought that people were losing attention about the importance of HIV. He figured that a good way to get attention was to trash Tony Fauci in front of 10 million people.
Larry Kramer was a dear friend yet he could, at the drop of a dime, trash you in the newspaper. He was very unpredictable. But I loved him.
(As told to STAT’s Helen Branswell, lightly edited for publication)
Larry Kramer was a force of nature. I was introduced to him in the mid 2000s when I was New York City’s health commissioner. At the time, I was trying to make changes to the way the city, and the state, dealt with HIV, and to take down barriers that made it so difficult to get an HIV test. I ran into a buzz saw of opposition. I reached out to Larry for advice and support. He told me to come over for lunch. And to bring lunch. A tuna sandwich, to be specific. So I did.
I remember his big, drafty, loft-like apartment in Manhattan with the most unusual computer monitor I’d even seen: a large-screen TV turned on its side. The conversation we had over lunch was very helpful.
I believe that Larry Kramer fundamentally changed the world of medical research. He made Tony Fauci and others realize that it is not ethical to deny people treatment when no proven treatment exists, and that if experimental treatments are being developed, you’ve got to figure out a way to accelerate access to them. Building on the tradition of civil rights activism, Larry laid the groundwork for a new generation of health activists. He started a new style of focused in-your-face activism that was valid and changed health advocacy work from service organizations to organizations focused on creating structural changes to help people live better lives. He also turned a bright spotlight on the ethics of medical research, and changed that for the better.
Tom Frieden is a physician who is the president and CEO of Resolve to Save Lives, a global nonprofit initiative of Vital Strategies that works with countries to make the world safer from epidemics. He is the former director of the Centers for Disease Control and Prevention and former commissioner of the New York City Health Department.
I remember Larry Kramer once saying in the press that Robert Windom, who was then the Assistant Secretary of the Department of Health and Human Serivces, was so dumb that he needed to be watered. How mortifying, I thought. Years after that, when I was offered the opportunity to be the first AIDS czar, he said something similarly withering about me. When I turned down the job because I was pregnant with my first child and wasn’t sure I could give the job the full attention it deserved, he wrote me a lovely note saying how very sorry and disappointed he was.
I think that many people were more than a little bit afraid of Larry. He was formidable, he was tough, and he was angry. All of that made it possible for him to change history. But it was always wonderful to see his thoughtful, generous side break through.
Margaret Hamburg is a physician and current chair of the board of the American Association for the Advancement of Science. She was commissioner of the U.S. Food and Drug Administration from May 2009 to April 2015.
The first time I encountered Larry Kramer was through his play, “The Normal Heart,” in London in 1986. As a young, gay man, I had dropped out of college and thought escaping to England might set me off on a new path. It’s so long ago now and memory being what it is, episodes from your past are hazy, piecemeal. But the play, its main character (modeled on Larry himself, of course) with Martin Sheen in the role, mesmerized me, and I remember that night well. Here was anger, passion, a deep, deep sadness on stage, all the emotions I felt coming of age in the Reagan era, in the age of AIDS, but wasn’t able to articulate.
A few years later, after I had joined ACT UP Boston, I met Larry at a big meeting in Washington, D.C., but only really got to know him once I had relocated to New York and found myself swept up in the world of ACT UP New York and its Treatment and Data Committee. Here I met LGBTQ people who were interested in science, in politics, who would meet together to devour the great William E. Paul’s immunology textbook one night and chain themselves together in front of a drug company headquarters one day, all in the same week.
What Larry and I and many of us in T&D shared was an overwhelming obsession with AIDS treatment. Larry wanted a cure and pushed us hard. In retrospect, this focus excluded much of what was happening in ACT UP at the time: a push to address what I now would call the social determinants of health and the racism and misogyny built into the systems of research, care, and prevention that we needed to work for all. It was Larry’s blind spot, as well as ours in T&D, and it was this rift that cleaved the group from ACT UP to form the Treatment Action Group (TAG) in the early 1990s.
Larry wanted a cure. He wanted a Manhattan Project for AIDS. Mark Harrington, my partner in crime then, who still leads TAG, and I had other ideas. We wanted a reorganization of the NIH’s AIDS research program, and for NIH to put in place a new leader to manage the AIDS research portfolios of NIH’s constituent institutes and centers. We pitched this to the top aides to Sen. Ted Kennedy and Rep. Henry Waxman — Tim Westmoreland and Michael Iskowitz, respectively — who had shepherded so much important AIDS legislation through Congress. Even though it was opposed by Harold Varmus, the new NIH director, our plan got passed into law. The new director of AIDS research at NIH? William E. Paul, whose textbook was our bible during those long nights trying to understand what was happening in our bodies.
Larry was livid. Mark and I were at his house in the Hamptons one summer and Larry turned to me and said, “I want to flush your head down a toilet.” We had ruined everything: the prospects of a Manhattan Project, and had broken up ACT UP. Larry could be unbearably cruel and to a young gay man who looked up to him, the censure hit hard. But these excoriations didn’t last and we would find ourselves at protests, in meetings with drug companies, one of which with Hoffman-LaRoche in Times Square went terribly wrong with Larry overturning tables and all of us scattering through the massive Marriott Marquis trying to evade arrest.
After years on the frontlines, when I decided I wanted to go back to college, I asked Larry to write a recommendation for me to his alma mater, Yale College. He didn’t blink an eye, quickly introduced me to people, and when I arrived for my Yale interview got a glimpse of what he wrote about me. It was generous, effusive. That was Larry. He set me on my current path with his encouragement and the drive of a stage mother with a possibly talented child who was simply going to make it.
The last time I saw Larry for any extended visit was when he invited me to accompany him to the closing night of the Broadway run of the revival of “The Normal Heart” in 2011. All those years later, the play didn’t strike me in the same way. I found it over the top, just too much, too close to melodrama. But then I listened in the final scenes to what was happening around me. People in the audience were crying. You could hear sniffling, quiet gasps of emotion, and I realized that what we had lived through was now history, and this play was part of it.
After the curtain calls, as his well-wishers crushed in around him, I stepped back and watched for a few minutes. Then I blew him a kiss and took the train back to New Haven. Near the end of the ride, we passed Bridgeport, Conn., where Larry was born in 1935. After midnight, I arrived back in the city where Larry as a young, gay man struggled to find his place and how to deal with the chaotic emotions that defined him, where he would start his career in life, in movies, in theater, in politics, in biomedical research, and in and drug development and that would make him one of a kind.
By the time I became the director of the National Institutes of Health late in 1993 and met Larry Kramer, the historical Kramer-Fauci debates were largely over and NIH-funded research on HIV and AIDS was making substantial progress. But I worked on retroviruses and had gained some notoriety for once having opposed the creation of an Office of AIDS Research outside of the National Institute of Allergy and Infectious Diseases, so I wasn’t surprised to get a call from Larry early on.
But I was surprised by his message: an invitation to bring my wife and theater-oriented son to what proved to be a delightful lunch in New York with him and another revered playwright. I had expected surliness, but instead got charm.
As Tony Fauci told me in advance, don’t expect the charm to last forever, and indeed it didn’t. But Larry taught me how complex and instructive an engagement with disease advocates could be, introduced me to some wonderfully astute advocates at ACT UP and elsewhere, and helped me become more attentive to their views.
Harold Varmus is professor of medicine at Weill Cornell Medical College, co-recipient of the Nobel Prize in Physiology or Medicine in 1989, and former director of the National Institutes of Health and the National Cancer Institute.
It was terrifying being the target of a Larry Kramer tirade.
At the height of the AIDS epidemic in the mid-to-late 1980s, I was a rookie reporter for the New York Times in Washington. At the time, Larry raged against President Reagan for not doing enough about AIDS. He raged against my newspaper for being too slow in covering the story. And he raged against me. Larry would call, again and again, haranguing me for not writing enough about AIDS.
I was one of hundreds of his targets, a relatively inconsequential one at that. But he made me feel guilty and uncomfortable. I was a closeted gay man at a newspaper that at the time was not very tolerant of gay people. Why was Larry putting this on me, I wondered. Was I supposed to be a gay activist? I didn’t even cover health. I wanted him to stop calling me — but he didn’t.
That was the genius of Larry Kramer. He made us squirm. He never let up. There was no time for finesse because People Were Dying!
Larry was remarkably consistent. I dug out an old story from 1987 in which I quoted him practically sneering at Reagan’s first pick of a gay man on his AIDS advisory panel, saying, ”He’s better than nobody but not by much.” Fast forward to early this month, when I emailed Larry about remdesivir, an older antiviral medication that Gilead Sciences is testing as a treatment for Covid-19. He was no less unsparing. His long tirade by email opened: “Gilead has always been selfish, greedy, tricky pigs.”
Looking back, Larry’s ruthlessness feels more like understandable impatience. His cruel rants now seem more like urgent and well-founded pleas to save millions from dying. That’s why in recent years, rather than dreading Larry’s calls I would seek him out.
His last words to me, after saying “I have always hated” Gilead, were ones of encouragement: “You’ve been doing great work!’
Maybe Larry had softened, just a little. Or maybe there was always more to him than a one-dimensional, infuriating agitator.
Rick Berke is the co-founder and executive editor of STAT.