This article is part of “AIDS Is 40. But It Really Isn’t,” a series of personal stories, news reports, and interviews that pushes back against commonly held narratives regarding the start of the U.S. HIV/AIDS epidemic.
This year, many people will honor and observe an important milestone in the HIV/AIDS epidemic: Namely, that 40 years ago on June 5, the Centers for Disease Control published the infamous Morbidity and Mortality Weekly Report that first spoke about cases of pneumocystis pneumonia that would later be recognized as the first documented conditions related to AIDS. A month later, The New York Times published its own first article about AIDS.
But before the CDC and The New York Times, an LGBTQ+ newspaper called the New York Native published articles about rumblings of a gay cancer in the community. The first of those articles published on May 18, 1981—nearly three weeks before the historic MMWR report. And the person behind that coverage was writer and physician Larry Mass, M.D.
I had the pleasure of talking to Mass recently about how that initial coverage of HIV/AIDS came to be, and the role he played during the moments when mainstream media just started becoming aware of the epidemic.
[This interview was facilitated by the community advocacy group What Would an HIV Doula Do?, which is driving a conversation about the stories we are—and aren’t—sharing as our society marks 40 years of mass public awareness of HIV/AIDS.]
This transcript has been edited for clarity.
Mathew Rodriguez: Can you talk a little bit about your career, how you found yourself at the New York Native at that time, and what the publication was trying to do?
Larry Mass: Wow. Well, I have so many thoughts all at once.
I was just reading your piece about Hari Ziyad’s “Black Boy Out of Time” and your discussion with him about all the different kinds of writing that he was doing and the different ways he thought he could or might put together his memoir. You know, it was not just a straightforward memoir.
That’s something that I’ve been dealing with my entire life and career as a writer. I do a lot of different kinds of writing. I have written a lot of medical things, but I’ve also written a lot of cultural pieces, you know, on film, on music, on opera.
I was very interested in psychiatry and gay subcultures. I wrote about their community. I had a whole column about that for years. I wrote a memoir, 1990, called Confessions of a Jewish Wagnerite—my entrée into gay life was as a kind of opera person and opera queen. And I’m putting together a sequel to that memoir, and it’s not strictly a memoir. I mean, I’m going through the same thing that Ziyad did: It has all these pieces about Larry Kramer, about his books, about psychiatry, and about AIDS. And it has, you know, mixed in with all the opera Wagner stuff that is kind of at its core. So I really relate to this business of not fitting neatly into any specific niche or category.
I very naively thought that after that declassification of homosexuality as a mental disorder ... everybody was going to love us, all the laws would be changed. Everything would be nice and, you know, it would be—boy, talk about naive.
At the time of first writing for the New York Native, I was a physician. I had completed a residency in anesthesiology and was actually practicing anesthesiology in the Boston area. And, I was in the process of coming out as gay. Almost immediately, I experienced a lot of, you know, confrontations with institutions and culture.
In the mid-1970s, I tried to do a second residency in psychiatry. Anesthesiology was not the greatest fit, and I tried to do a second residency in psychiatry, and I experienced astounding homophobia. This is several years after the declassification of homosexuality as a mental disorder in ‘73, ‘74. I did these interviews in the Chicago area and I just casually came out. And I couldn’t believe the levels of homophobia that were still there.
That move to declassify homosexuality as a mental disorder was not that popular in mainstream psychiatry, and there was a lot of threat to reclassify it. So that catapulted me into my gay activism. My early gay activism was writing about psychiatry and sex research, and how sex research was gaining credibility over psychiatry, which is increasingly vestigial and, you know, very, very troubling.
In the middle of all this, I was writing these pieces in the gay press, in the Native, and my first pieces were on culture. There was one about the subject that Vito Russo wrote about, about the celluloid closet: I had a piece about all these films that were coming out and showing gays as killers and psychopaths. It was called “Why is Hollywood Dressing Gays to Kill?”
I was really kind of all over the place with this stuff. I went and I attended the Gacy trial in Chicago, where I spoke with the medical examiner who told me that they had many, many murders of trans people and cross-dressing gay men, but they had never seen a single case of one that was a murderer such as you get in all these movies—you know, there’s tons of them; Alfred Hitchcock is maybe the biggest example, [with] Psycho, of this. All these horrible stereotypes of culture.
I very naively thought that after that declassification of homosexuality as a mental disorder, and with a few new studies from sex research like the Masters and Johnson study, the coast would be clear for all of us to just, sort of, move forward. With gay liberation, everybody was going to love us, all the laws would be changed. Everything would be nice and, you know, it would be—boy, talk about naive.
So, I’m writing these pieces in the gay press about gay culture. I was already aware, as a very sexually active gay man, that there were spikes of sexually transmitted diseases in the gay community. We didn’t have much in the way of gay health in those days—I mean, there were a few physicians and a few clinics. But, you know, there were spikes: syphilis, gonorrhea, there was an amoebiasis epidemic, and, you know, it sort of fell on me.
I was a physician, and I had a natural inclination and interest in this stuff. And without planning it, I became—I think I was the first physician to write on a regular basis for the gay press. It wasn’t something that was strategized as such by anybody, including me; it just happened.
She said, “You can’t tell anybody anything.”
In the middle of that, in the late winter of 1981, I got a call from Dr. Joyce Wallace.
Dr. Joyce Wallace was my friend and colleague in community medicine. She really did very marginal and very heroic work on trying to get medical outreach to street workers, to “prostitutes.” They had no representation of any kind anywhere; no organization, even among themselves. It was really difficult. But Joyce found part of her networking with gay men like me, who were working on the margins trying to help things, doing what she could. And so she became my friend and colleague in community medicine. Again, no real structures of any kind; we had no real established network.
Joyce called me one day. You couldn’t always understand her fully, and she could be kind of eccentric in the way she expressed herself. But, basically, in a very short call, she said there were some people in New York City emergency rooms and intensive care units; she was very concerned. She was told she could not talk about any of this to anybody, including me. She said, “You can’t tell anybody anything.” She basically hung up after a minute or so. I mean, it was just all very quick and hush hush.
Well, I didn’t know what to do. I didn’t want to betray anything with Joyce. But I called the New York City Department of Health to see if I could find out what was going on. And I had a little interview with Steven Freeman, who was, I think, acting chair of the—I hope I have that right, Steven—acting chair of the New York City Department of Health. And he said, “Well, there were, in fact, some cases, and there just was not enough information about them to draw any conclusions. They were not clearly related. They were quite unusual in that they all seemed to be cases of immune deficiency that would then set the people up for pneumonia.” At that time, there wasn’t any discussion of KS [Kaposi sarcoma] in this group, it was just—yeah.
Rodriguez: You had said that you had gotten a call from your colleague about what was happening. A lot of people talk about hearing about AIDS through rumors, or gossip, or rumblings—there was nothing official in the beginning. I know you had heard something from your colleague; had you heard anything in the community as well, on the non-professional side?
Mass: No. But, well, almost at the same time, one started to hear these rumblings in the community; people knew people who were sick. I don’t remember the exact sequence.
Larry Kramer was my friend of some years at that point. And, you know, I don’t remember the sequence of—I don’t think I did any kind of outreach to Larry at that moment. I think the first thing I did was develop this little news report which became the first report in the press. I did that with Chuck Ortleb, the editor of the Native. And they entitled it—the title of the newspapers was “Disease Rumors Largely Unfounded.”
The piece is largely this little interview with Steven Freeman; it was trying to allay any panic and trying to emphasize that we still just didn’t know enough to make any conclusions, or to initiate any sweeping advisories at that moment. Clearly, there would have to be follow up on this, but, at least, for that moment, that’s what we knew.
We’ve got to be as scientifically accurate as possible. Whatever it is we’re saying or doing—and we’re basing it on whatever it is we know—we can't venture very far afield in conjecture. And there was already, very quickly, a lot of conjecture.
Rodriguez: You know, we’re both reporters, and I’m thinking, reporter to reporter: When did the rumblings or the rumors that you hear, even from your friend, elevate from like, “Well, I heard this thing” to like, “Oh, maybe there’s something here, and it’s time to publish something,” or to investigate?
Mass: I honestly do not remember whether I called Larry and spoke to him about the piece on the eve of its coming out, or as it was coming out, or even before it was coming out. My sense is that I didn’t because, you know, Larry is just not any kind of a presence in it, at that juncture.
But it all started to cascade very quickly, and we realized that we were dealing with a serious problem. I was, from the get-go, very much on the defensive of the community because I really had the strong sense—we have no civil rights, and we’re talking about a potentially infectious communicable disease that could threaten the greater population. A community with no civil rights, at the very least, we really have to be careful about what we’re saying might or might not be happening.
That immediately was set up against people who wanted to take much stronger initiative, like Larry—who [felt], you know, OK, we might be concerned about civil rights, that might be an issue; but if we’re talking about something potentially extremely deadly that can kill large numbers of people, that has to be the priority. So you could see the kind of dialectic there from the beginning.
And I’ll just say, you know, I was looking over your piece, “We Need a Plan for How to Have Casual Sex Again”—I mean, because it’s just wonderful; that is where I was coming from in the beginning. Wow: Let’s not forget we don’t have our civil liberties, let’s not lose all the values and priorities of gay liberation. We have a positive, celebratory attitude towards sex. Let’s not just toss that thing out the window; let’s figure out what we can do.
These are the polarities that got set up early on. All of us erred in various ways in being too outspoken with our viewpoints.
The one thing that remained critically important to me, and that I just wouldn’t—I couldn’t release my grip on, was the business of: We’ve got to be as scientifically accurate as possible. Whatever it is we’re saying or doing—and we’re basing it on whatever it is we know—we can’t venture very far afield in conjecture. And there was already, very quickly, a lot of conjecture.
A lot of it was sympathetic. I mean, look: Not only did we not have any civil rights, I mean, we were hated. The year before that, months before that, Dan White’s assassination of Harvey Milk. And then there’s Gacy trial in Chicago. The reason I went there is, I was afraid that that was going to be the match that would ignite a huge reaction, homophobic reaction [in] society, and we’d all end up in camps and that kind of thing. The idea that it might be some kind of chemical biological warfare was very seductive.
Rodriguez: It’s interesting that you say that, because I just—you know, one of the things that I’ve gleaned into, as a reporter and an editor who deals with HIV every day, is the parallels between early AIDS and COVID. In the face of not much information, conspiracy theories abound, and blaming people—you know, calling it the “China virus,” things like that. There’s a historical antecedent to everything that we saw.
Mass: Absolutely striking similarities. [Calling COVID-19] the “China virus” was—I mean, I hated anything that linked whatever it was that was going on [regarding AIDS in the early 1980s] with gay [men], to the extent that I was the lone voice of opposition to naming the organization Gay Men’s Health Crisis. As in: Viruses are not gay, I didn’t want any “gay-related immune deficiency,” “gay cancer”—all that stuff was horrifying to me.
But I did join the others in voting for the name. They all made a good case for it, and I think time has shown them to be right: the name Gay Men’s Health Crisis has mostly been a good thing. I don’t know anything really bad or negative that’s come of it. It's a little bit like NAACP: It’s a name that has a lot of good history connected with it.
But anyway, this business of [calling the coronavirus] the “China virus,” I mean, it’s just horrifying—and vilification and scapegoating minorities. I did some looking into the Spanish flu epidemic; the Spanish influenza. They had something similar then as well: The Spanish were unhappy about it, and there was stigma, and, you know, there were consequences.
But what’s reassuring is the kind of the long-term fallout of that. If you think about it, you still hear references to Spanish influenza, but I don’t think anybody ever says, “You’re the ones who were responsible for that flu that killed millions of people.” I mean, it doesn’t happen that way.
Rodriguez: There’s this book called Europe by Norman Davies that’s a history of Europe. There’s a small part in it about syphilis as well. When syphilis was really bad in, let’s say post-Medieval or the Renaissance in Europe—1400s and 1500s—every country called it by a different country’s name. So if you were in Germany, it was the French disease. If you were in France, it was the British disease.
Mass: Or the Jewish disease; they did that too. Yeah.
I said, “Why aren’t you all doing more? Why don’t we have features? What is happening? The Times is not covering this thing.” He said, “We’re not an advocacy journal.”
Rodriguez: Back to the Steven Freeman call: As reporters, we’re taught to have what I would call a high bullshit meter. Did you feel like you were being lied to?
Mass: Again, it’s really hard to remember everything. I do not now, ever remembered since, of being either put off, treated discourteously or disrespectfully; or I did not have negative feelings about that interaction with him. I believe he was really telling me what [he] could, at that time. But, you know, again, I'm someone who often kind of wanted to work with what was there, rather than confront the bullshit.
I shouldn’t be indicting myself so much this way. But, you know, it was sort of the kernel, or the core, of this problem with Larry Kramer. Larry, whose track record of turning out to be right was simply phenomenal, was all about, you know, very aggressive confrontation of everyone and everything. And look what he has to show for it, so who could argue with Larry Kramer? I mean, he was this great, great leader who led the charge and achieved, you know, these miracles of medicine and healthcare.
I was someone who was more often inclined to, kind of, you know, not want to shoot my enemies on sight. Rather, see what, you know: How we can work with them and how we can—you know. I think history has shown that Larry was the way to go, and that’s fine.
So the reason I’m giving you all this filler here is that, you know, if I didn’t have a more confrontational reaction with Steven Freeman, that may have been part of it—my own, sort of, willingness to, kind of, feel him out, and hear him out, and take what he was saying on its own terms. I don’t think he ever emerged as a real villain, just for the record. I mean, he wasn’t someone that was—
Rodriguez: Yeah. I don’t even think that I was asking about him being a villain. It was more like, just, you know, sometimes you have that feeling as a reporter that like there might be more here.
Mass: Well, the best example of my own confronting people—or a good example of known confronting people in these ways—was when... I attended the first International AIDS Conference in Atlanta [in 1985]. And I went up to Lawrence Altman, The New York Times reporter who authored that first article, “Rare Cancer in 41 Homosexuals in New York City.” And I said bluntly and directly, you know—I think under the real influence of Larry Kramer at this point—I said, “Why aren’t you all doing more? Why don’t we have features? What is happening? The Times is not covering this thing.” He said, “We’re not an advocacy journal.” Just one sentence, one statement.
I didn’t try to duke it out with him further; I didn’t confront him further. But, you know, I never have forgotten that. I did my share of confronting people, but nobody did the lion’s share that Larry Kramer did.
There were these different groups, you know, African nationals, hemophiliacs, drug addicts, and gays: What did they have in common? The epidemiology just wasn’t working.
Rodriguez: So you published your first report, like we said. And then, obviously, a month later, the CDC published its Morbidity and Mortality Weekly Report about pneumocystis pneumonia. And I’m just wondering, what is your reaction to seeing this report a month later. Was it like vindication? What were you feeling?
Mass: Well, no. At that point, I immediately set to work on what became the first feature article on AIDS. That was also in the Native. And that was July 27th: That was a very big feature called, “Cancer in the Gay Community.” That wasn’t my title, I didn’t like it then; I’m OK with it now. It was a big piece on the whole epidemic as it was unfolding, and it had three substantial interviews with three leading figures in the epidemic, physicians: Dr. Alvin Friedman-Kien from dermatology at NYU, [who investigated early] KS cases, and a friend of Larry’s. And Dr. Bijan Safai, head of dermatology at Sloan Kettering Memorial; and Donna Mildvan, chief of infectious diseases at Beth Israel. Beth Israel immediately opened its doors, as they had a real track record of outreach and care for the disenfranchised, based on a very big, impressive history of work with drug addicts that nobody else was doing. So they were placed to do that.
Rodriguez: What was your reaction to seeing the CDC's MMWR when it came out, after having previously published about it and being told on the phone that, you know, it wasn’t a thing?
Mass: Well, it wasn’t any surprise, because by that point I knew about all the articles, and all the work that was going on, and all of the [inaudible] that was happening. I was trying to not only stay on top of it—and that was all the stuff in this big piece—but, you know, obviously, it was becoming this bigger and bigger, more and more serious epidemic.
Very quickly, a task force was organized by CDC that was headed by James Curran and made contact with a number of us in New York. And we had meetings. He immediately labeled it as “The most important new public health problem in the United States.” And it was bigger than the combined—already was having bigger death tolls than the combined tolls of Legionnaires’ disease and some other epidemic, I don’t know what the other one was.
So you were asking, what was my reaction? I think the biggest reaction was how difficult it was to—we didn’t really know what we were dealing with. We did not have epidemiologic certainty of the cause of AIDS, the primary agent being HIV, for another three years. There were these different groups, you know, African nationals, hemophiliacs, drug addicts, and gays: What did they have in common? The epidemiology just wasn’t working.
I was so worried: What if we got it wrong and we set off all of these alarms? We destabilize the whole gay liberation movement, we turn the country against us.
I mean, it seemed that AIDS and infectious diseases were, at some level, a part of a syndrome. But we didn’t have enough certainty even about that to rule out things like chemical agents and, you know, this conspiracy theory I mentioned earlier of chemical biological warfare. What they all had in common was this immune deficiency—and that can be related to infectious diseases, but nabbing a primary agent was really, really elusive.
Larry Kramer is the only one who, from the get-go, seemed to have a strong, reasonable gut instinct that we were dealing with a primary agent. I mean, I shared that instinct, but I was so worried: What if we got it wrong and we set off all of these alarms? We destabilize the whole gay liberation movement, we turn the country against us in terms of—you know, we don’t have civil rights; I mean, there were a lot of concerns.
So I was among many who, I think, erred on the side of caution. Larry was a voice of leadership saying, “I don’t care what else is going on. If we’re all dead, civil liberties won’t be pertinent.” And in retrospect, you know, Larry was right.
So, we were cautious in our earliest directives about even initiating clear calls for everybody to use condoms, because it didn’t seem to be a single agent; we didn’t have that certainty. In our earliest, leaflets for GMHC, we recommended that people be careful about the health of their partners, and the number of different people they had sex with, and try to make sure that they’re not sick.
But we didn’t do what another faction of the gay community very quickly recommended, which was that everybody use condoms. And that faction was the [inaudible] of Dr. Joseph Sonnabend and his two patients, Michael Callen and Richard Berkowitz. They very quickly put out a pamphlet called “How to Have Sex in an Epidemic.” That’s filled with terrific stuff. And they were quick, you know.
The problem with their directives was: In and of itself, those were very good recommendations. But underneath it was their theory of the epidemic, which was that it was being caused by multiple confluent sexually transmitted diseases. That gay men were [inaudible] themselves so promiscuously and so excessively that they were developing all these different concurrent sexually transmitted diseases, and were developing a kind of aggregate immune deficiency based on that. We know that people with chronic states of infection can develop immune deficiency. So that was their theory.
Rodriguez: So, The New York Times article comes out in July after the MMWR in June. A lot of people look to that article because they don’t know about the New York Native and your contribution. But what was the perception about them, at the time, among the community? When it came out, what was the impact that it had at the moment? And what was the difference between the two [articles] for you?
Mass: Well, I mean, the Lawrence Altman [article] covered sources in The New York Times; it got a lot of attention. But I think the word was already widely out in the gay community from the Native pieces. Because that kind of information—that’s something that does kind of tend to spread by word of mouth. Something scary and important.
The Lawrence Altman article, I think it made a lot of people uneasy at multiple levels. It meant that the epidemic was, indeed, very serious, and getting a lot more so. It had that kind of, somewhat, medical tone. I don’t think, by the way, the word “pneumocystis” ever appears in his article—and that article “Rare Cancer,” it’s just about the KS lesions. The word “gay” does not appear once in that article. There’s a lot of issues there. I mean, it was sort of like, “Oh my God, we’re going back to the bad old days of The New York Times.”
At that time, The New York Times editor was Arthur Gill. The Times was very homophobic; I mean, The Times was not our friend. So Lawrence Altman’s article is not this sort of olive branch—you know, peaceable outreach thing to the gay community—it boded quite ill. Of course, boding even more ill was just the basic information about the seriousness of the epidemic. But, yeah.
Larry Kramer’s film 'The Normal Heart' shows [Ned] coming out on that Fire Island ferry that weekend. And the article that they had, or that seems to be there, is the one by Lawrence Altman. That’s not the article that he took out to Fire Island: He took out my article.
Rodriguez: One of the things that TheBody is trying to do, and a few people that you know are trying to do, are challenge this idea of HIV only being 40. In the spirit of that and also knowing that your article just turned 40, are you doing anything to commemorate or honor 40 years of AIDS being in the public consciousness?
Mass: I’m connecting with lots of people. I mean, this interview with you is a wonderful gift: It’s really honoring this whole history, you know, that we are a part of, so I considered that something very special.
And I’ve done some other interviews. The writer, Bill Goldstein, is working on a biography of Larry Kramer, and he’s got several different programs coming up that deal with Larry and AIDS.
You know, it was very hurtful to me that David France and his How to Survive a Plague doesn’t clearly credit me with having done this early work in the Native. I have no idea why; I just don’t understand it. Although, he is—you know, his focus is Sonnabend. I think Sonnabend is written about at greater length than any other figure in his book. He knows that I’m coming from a different place regarding that for Sonnabend. I don’t know.
Randy Shilts, likewise. I didn’t realize even, I did not remember: I met and sat down, spent a good deal of time with Randy Shilts at that 1985 first International Conference on AIDS. And it was Randy, at our one-on-one meeting, who told me—I didn’t even realize that that first report on the 18th was the first report—Randy said, “You know, that’s something that nobody is ever going to be able to take away from you.”
Well, he himself did that when, when And the Band Played On came out, there’s no acknowledgement of those early pieces in the Native. That work was relegated.
For a lot of different reasons, it doesn’t seem to be in the interests of various writers, who became more prominent writing about AIDS later, to give me much credit for that earlier work. We can talk about that at greater length some time if you like. But that was hurtful to me.
Larry Kramer’s film The Normal Heart shows [Ned] coming out on that Fire Island ferry that weekend. And the article that they had, or that seems to be there, is the one by Lawrence Altman. That’s not the article that he took out to Fire Island: He took out my article, you know, the big “Cancer in the Gay Community” piece.
So there’s a lot of, kind of, distortion of history and stuff. But I’m grateful that I’ve been able to be a part of it. I’m grateful for all the good that has been done by all these people that I’ve been critical of as well. And I’m grateful to be here.
Rodriguez: Last question I want to ask you is: The scholar Jennifer Brier, in her book Infectious Ideas, writes about your article, and she praises it for raising so many questions about AIDS in the face of getting no answers from officials. And I want to know, 40 years later, are there any questions that you still have about HIV, or things that you want to know about HIV?
Mass: Oh, yes. You know, a lot of us learned the hard way to value Larry Kramer, even when he was at his angriest and seemingly most irrational. Anything and everything Larry did, we learned, you have to take what he’s saying very seriously. You can’t keep making the same mistake and say, “Oh, that’s just Larry going off on the spec.”
Larry’s final sense—and this is very much in his book The American People—of the bottom line on where we stand on AIDS now was that we could have a fully effective treatment and we could have an effective preventive vaccine. It’s been commonplace understanding that science simply does not have the resources—simply does not have the ability—to create a vaccine for this extremely, wildly difficult virus, which is not the same as the hepatitis C virus, is not the same as others, is not the same as COVID. Larry’s belief was, it could be done if the right people get behind it. He is still, at the end, vilifying Anthony Fauci as a key figure in this, saying that Fauci has the ability to push forward.
You know, as gay people, we were always told that our timing was never right. “You can’t ask for things in the middle of all this other stuff going on.” “In the middle of COVID, you don't have any right to ask for treatments for AIDS or vaccines for AIDS.”
Larry wasn’t around for COVID. But Larry was saying, “Oh, yes, we do. We can and should insist on a curative treatment like they have for hepatitis C. And we can and should insist on a preventive vaccine.”
Larry believed it could happen. And I have to say, that’s where I’ve come in my own belief.