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GMHC Founder Larry Mass on the ‘Unwritten Chapter’ of AIDS History

by | Aug 24, 2020 | Film Review, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 0 comments

Dr. Larry Mass (Adam Fredericks/GMHC)

There are few nights more consequential in the history of gay men than the evening a group of gay men gathered at the home of Larry Kramer more than 35 years ago and began the business of creating the Gay Men’s Health Crisis (now known simply as GMHC).

One of the men in the room where it happened, Dr. Larry Mass, is as soft-spoken and measured as Larry Kramer, whom we lost last month, was mercurial and incendiary. But don’t let that fool you. In our candid conversation for My Fabulous Disease, Dr. Mass has a few bones to pick about what went down in the earliest years of the AIDS crisis, and he isn’t beyond naming names. 

Along the way, Larry and I discussed the legacy (and shortcomings) of Larry Kramer; the chronic, damaging excesses of gay men; and how GMHC has transcended its original mission in the best possible way. 

The heart of our chat, though, covers an unwritten chapter of AIDS history that, according to Larry, even celebrated historian David France hasn’t sufficiently chronicled. 

Here is our conversation, gently edited for length and clarity. 

 

Mark S. King:  Thank you for doing this, Larry. 

Dr. Larry Mass: Congratulations on your GLAAD Award! My life partner, Arnie Kantrowitz, was a GLAAD co-founder, you know. Your blog is the stuff of life, and relationships, and our fabulous diseases. I feel like you’re a kindred writer. 

I really appreciate that. I will admit, while reading about your life’s work and your many accomplishments, I keep thinking of you as “the other Larry,” and I wonder if that drives you nuts.

I’ve always taken it as a compliment. However difficult Larry Kramer was, he was a great figure and I have the utmost regard for him. My relationship with him was a privilege. A total pain, of course, but also a gift. 

Given we have had some time to process Larry Kramer’s passing, what does it mean to you? I wonder if he had emerged today, if we would need him as much as we did in 1983. 

I don’t think we’re going to see his likes again. The loss is huge. He had a lot of things to say, and he was disliked and disbelieved initially. A lot of it was his tone and manner. Would we still listen to him today? I suspect whatever he would have to say would still be trenchant and powerful. 

GMHC just celebrated Founder’s Day, and you are among two surviving founders of GMHC. 

Yes, me and Edmund White.

Edmund White! Speaking of writers telling the story. Wow. Anyway, I won’t ask you if Founders Day makes you feel old. But I do feel the clock ticking every day, myself. Tick tock.

I feel it, too. I don’t have a lot of anxiety about that. In the last 35 years, I haven’t been very unhappy or depressed. I can’t afford those emotions. I don’t have time. There are so many things I want to do. Time is precious. I woke up with anxiety this morning about the memoir I’ve been working on. And it is very easy to get despondent about the state of the world.

You just said you never have negative emotions and then you started enumerating your negative emotions.

Well, I mean I can’t afford to have them.

We’re both in recovery. I sit in recovery meetings these days and use them to just try to calm myself down. And yet I’m an AIDS activist! I’m supposed to be filled with righteous indignation, but I can’t afford that anymore if I want to maintain my sanity and sobriety. 

Larry was volcanically angry every waking moment of his life. Yet he turned all those moments into gold. As a person in recovery, if I tried to do that, I would be consumed very quickly and end up doing more damage to myself and to the causes we’re fighting for.

You were involved in an early controversy among AIDS activists that I find fascinating. It was around what was causing these deaths in the early 1980s, before HIV was identified. Nobody knew. So there was some conflict between those who thought the culprit was a “single agent” (which eventually turned out to be HIV), and those who thought the cause was “multifactorialism,” meaning a bunch of factors together caused AIDS, like multiple partners, recreational drugs, poppers, getting other sexually transmitted diseases, all of that, resulting in a kind of “immune overload” that damaged the immune system and led to AIDS.

Yes, multifactorialism included many cofactors that may have played roles in many individuals. But the co-factors were different for the different groups. Haitian nationals didn’t have the STD’s that gay men did, for instance. Nor did hemophiliacs or drug addicts.

Very different groups of people and behaviors, yes.

Multifactorialism was not entirely implausible as playing some role, perhaps facilitating a primary agent, making things worse or better in different individuals. But the idea that it explained this sudden, raging, almost uniformly fatal epidemic in four different major risk groups on a global scale became increasingly preposterous. 

Eventually, “multifactorialism” morphed into “AIDS denialism.” (AIDS denialism was a destructive, fringe belief throughout the early years of the epidemic that HIV did not cause AIDS, or that AIDS didn’t even exist.) 

Larry Kramer was relatively silent about all this, by the way, although Larry did denounce AIDS denialism later and he was clear, almost from day one, that the epidemic was most likely being caused by a single, primary agent.

Everyone who took a stand during that time is very touchy about it. The bottom line, for me as an observer, is that everyone was a little right. There was a single agent, HIV, and there were also co-factors that worsened things for patients. But there seems to have been a lot of injury, with various arguments and charges levied back and forth between those two groups during that time. It left battle scars. 

This is a chapter that still has yet to be written, on what really happened and what the fallout was. Everything you just said about the sensitivities is exactly right. It needs to be explored and documented more. The biggest chronicle of AIDS is David France’s book, How to Survive a Plague, but it’s rather selective about what it covers of this history. I don’t think the phrase “AIDS denialism” ever appears as such in the book.

Color me intrigued. Why do you think David France’s work ignores this early debate about the cause of AIDS and the AIDS denialism that came later?

I think David’s choices about what to discuss in How To Survive A Plague were influenced by his own early propensities in favor of multifactorialism. Too many people, it seemed to me, followed the pathway of multifactorialism far past the time when doing so was clearly going against the grain of probability.

The biggest proponents of the multifactorial theory of AIDS were Dr. Joseph Sonnabend and his two patients, (iconic longtime survivor and entertainer) Michael Callen and (activist and writer) Richard Berkowitz. They each made huge contributions to AIDS on multiple levels. They wrote a groundbreaking pamphlet on safer sex in the early years called, “How to Have Sex in an Epidemic,” and were involved later in getting medications out to people, and Sonnabend would become a co-founder of AmFAR.

From the beginning, however, I had a lot of trouble with the three of them, to the extent that I eventually did not communicate with them during that whole early period. While I admired the service they were doing, they were insistent on the multifactorial theory to an extent that could seem fanatical. I found their approach cult-like and troubling. They were dismissive and denigrating of the single agent “killer virus” theory, sometimes bullyingly so.

Once we knew it was HIV, however, it’s not like those people denied it was HIV. They all got on board, right?

No. It went on for another ten years. Eventually, they did get on board. Sonnabend finally acknowledged that HIV was the primary agent, as did Berkowitz when he was hospitalized and treated for HIV. But there was a development that happened later that really invited much bigger scrutiny. 

The single biggest catastrophe in the history of AIDS was what happened in South Africa, where a third of a million people died unnecessarily because of AIDS denialism there. At that later time, in the early 2000’s, Sonnabend was actually on AIDS panels outspokenly discouraging the AIDS denialism that was going on in South Africa. None of the group (Sonnabend, Callen, Berkowitz) by any means endorsed what was happening there. 

Are you saying the President Mbeki of South Africa, who was a denialist, used this group’s earlier beliefs as a springboard for his own view that HIV had nothing to do with AIDS?

HIV denialism got more complicated, and it involved people who were much more fanatical, like Peter Duesberg, who acknowledged that Sonnabend was his initial inspiration (German biologist Peter Duesberg was an infamous denialist who authored Inventing the AIDS Virus in 1996 and believed AIDS was caused by recreational drugs and pharmaceuticals). But Sonnabend and Berkowitz – and Callen? – did eventually make clear their acceptance of HIV as primary in AIDS and as well in statements divorcing themselves from denialist extremists.

And you take their statements at face value, right?

Yes, and I certainly do not blame them for what happened in South Africa. But I think it showed the damage that that kind of thinking could lead to, indirectly. 

So you don’t exchange greeting cards with those folks?

Actually, I was on a panel not long ago with Richard Berkowitz. It was nice to see him. Apart from our past disagreements, I have a lot of regard for all three of them and their achievements. Sonnabend could seem a Svengali-like figure, but who could resist the charms and talents and heroism of Michael Callen?

I get most of my information on this topic from Richard Berkowitz’s documentary Sex Positive.

That’s very good, yes. 

Did you know that (HIV activism icon) Sean Strub just interviewed Dr. Sonnabend for an episode of POZ magazine’s online show, POZ at Home? I’ll send you the link, just in case you’d like to reconnect with old friends. 

I’d like to see it. Joe was a distinguished virologist and has made important contributions to research and activism. 

What do you make of the various addictions plaguing gay men these days? I know that has been a focus of your work. I was just reading that meth use among gay men in the Los Angeles area has actually risen during the COVID pandemic. And meth is getting stronger and more dangerous and leading to more overdoses.

It’s sad. For the speed drugs, there’s no real treatment. There’s 12-step fellowships and Crystal Meth Anonymous. There are no easy answers. Which brings us back to Larry. I never saw him take much interest in addiction. He saw it like he saw sex. Just get our act togetherJust say no. He never expressed any disrespect for recovery, though. ACT UP did important outreach with needle exchange, but it wasn’t a subject that got enough currency by Larry and others in our AIDS activist communities.

What I have heard a lot during this interview is, “Larry was always right.” Well, not always. As you say, addiction wasn’t something he gave much thought to. And issues of racial justice and gender equality weren’t exactly on his radar, either. But you, Larry Mass, identified addiction in our community decades ago. What I’m saying is that there were times when you were right and he was wrong. 

But it’s impressive how often time showed him to have been right. I was far-left on issues like sexual freedom. I wanted them to put the word “promiscuity” in quotes because it was so pejorative, and to say we were all fucking ourselves to death, as Larry so often did, I just hated that stuff. I was very critical of Larry about that. But what Larry was trying to talk about was a community level of commitment to love, responsibility with sex. And time has shown him to be right in the broadest sense. There’s no way of having unlimited sexual freedom without significant risk. 

It’s no mystery why gay men behave this way, right? We grew up gay in this society. No wonder we turn to drugs and alcohol or find validation through sex. Meanwhile, Larry Kramer wanted us to grow up in a society that values us, and he wanted gay men to love one another, and if both those things were true, gay men would probably engage less in damaging escapist behaviors. 

Yes. Larry loved us and he wanted us to love ourselves. He was the first and, to this day, still the only person to tell me so directly to value myself. “You have your own voice, your own things to say, and your own way to say them,” he told me about my writing, which he was always supportive of. More personally and genuinely than any other friend or colleague I’d ever had, he gave me a belief in myself as a writer and as a gay man.

GMHC was founded by gay white men. I often say that gay white men got what we came for; we fought for HIV research and the medications, and once we got them we left the HIV activism playing field. And we left behind people on that playing field. We left Black and brown people, men and women, to fend for themselves.

My point is, GMHC is a completely different agency in its makeup now than when it was founded, and it has embraced and served and protected those very populations that so many gay white men left behind. 

I totally agree with everything you just said. I’m so proud of the greater direction of inclusivity of GMHC over time. And it is a valid question to ask why, in the early days, there wasn’t more bridging among various populations. It was chaotic back then, and there wasn’t cohesive representation among various groups, like those who used drugs, Haitians, and others. And the absence of civil liberties coddled our insularity.

My personal message to you, Larry, is congratulations. You have been working on the front lines all these years, doing the work, staying in the game. No one could possibly ask for more.

That’s very generous of you to say, Mark, considering all you’ve done. Thank you!

 

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