Survival vividly recounts the story of this involvement.SEAN STRUB is the stereotypical “boy from Iowa” who came East as a teenager, landing first in Washington, D.C., where he was an elevator operator at the U.S. Capitol, and then, a couple of years later, in New York City. By the late 1970s, he was an 
activist in the gay movement, and his involvement expanded with the advent of AIDS. In 1994 he founded POZ magazine. His new memoir Body Counts: A Memoir of Activism, Sex and
I sat down with Sean at a café in his old neighborhood near Columbus Circle in Manhattan to discuss his work and his life.
Chris Freeman: What are your earliest memories that something bad was beginning to happen to gay men? Sean Strub: In the fall of 1980, I had really swollen lymph glands and I knew it was potentially serious. I also had hepatitis A and B that fall, so I was very ill. The year before, I’d been in Europe and got very sick too, so I was already hyper-conscious about my health. I knew Bruce Voeller, the founder and first executive director of the National Gay Task Force. He was a microbiologist; he started the Mariposa Foundation in 1970 to study gay men’s health, so he and I discussed what was going on. CF: Were you already involved in gay politics? SS: Yes, I was. At the time, I was a volunteer copy editor at the New York Native. I remember when the very first article appeared there in June of 1981 by Lawrence Mass, who wrote about this strange cancer that a few gay men had died from. It struck me as peculiar, and I paid attention to it. In July, the New York Times article came out, and it identified the three common symptoms among those first cases: night sweats, weight loss, and swollen lymph glands. I had all three, but I was able to rationalize them to myself. CF: Were you and your friends talking about it? Were there visibly ill people on the streets of New York? SS: Not really. And when we did start talking about it, later in 1981, what people worried about were the KS lesions. Initially, most people covered them up, so if you saw someone with them, it was an advanced case and they generally died very quickly. Just having swollen lymph glands or other symptoms didn’t necessarily mean you made the mental leap to AIDS; we just weren’t sure what those symptoms meant. I did read We Know Who We Are by Richard Berkowitz and Michael Callen when it was published in the fall of 1982. There was a line in it about the “kid from Iowa” who steps off the plane and has a couple of wild years before getting sick. That was me, and I knew it. In late 1983, a friend of my boyfriend’s died. That was the first death in my immediate circle. In 1985, there was a huge fundraising event at Lincoln Center, “The Best of the Best,” and I went. That was my introduction to the A-list AIDS fundraising in New York. CF: How did those people become part of the movement—or change it—in the ’80s? SS: If you look at New York, San Francisco, and London, the community leaders who emerged at the beginning of the epidemic came from very different spheres. In San Francisco, you have people like Cleve Jones, who came from the bathhouse culture, from the streets, very grassroots and grounded in the lives of ordinary gay men. In London, it was Terence Higgins, Simon Watney, Julian Howes, Lisa Power, and others, who were volunteers at the London Gay and Lesbian Switchboard. They were volunteer service providers, directly assisting the frightened and curious, and saw what was happening from the ground. But in New York, the first leaders in the epidemic didn’t come from that street sexual culture, nor were they service providers. The founders of GMHC, the first AIDS organization in the world, were Fire Island elites who, for the most part, had not been particularly active in LGBT politics. But they founded GMHC and connected with the emerging national gay and lesbian political leadership. The National Gay Task Force and Lambda Legal were the two national organizations. What began as a sexual liberation movement in the 1960s and ’70s started to become more about electoral politics and legal reform. They were seeking a place at the political table, and were very conscious of our image. The last thing many of the most image-conscious activists and the Fire Island guys—some of whom were still very closeted—wanted to talk about was what gay men were doing sexually. CF: What did you think of the recent version of The Normal Heart? And what do you make of AIDS being back in the public conversation? SS: It’s important to document our history, so I welcome all these efforts. One of the things The Normal Heart did well is communicate the sense of abandonment that gay men felt in those early years; it seemed like we were abandoned by everyone, including our families, the liberal or progressive political community, the media, and the political institutions. That sometimes gets forgotten, even as we remember the rage we felt at the government’s neglect. Of course, by now, there are fewer and fewer of us who were there and on the front lines who are still around, so the time is now to make sure our stories are told and preserved. The historical distance we now have from the very worst days of the dying is part of what is driving this current wave of interest. Also, we’re starting to see others document the era in a way that maybe doesn’t feel quite right, so some of us are trying to correct that. A whitewashing and “heterosexualizing” of the early years is perhaps inevitable, but we need to make sure it is addressed. The other, more personal part for me is simply the pleasure of being able to remember people who were important to me and to CF: ACT UP was not the beginning of AIDS activism. I think you’re right that the story before that is largely unknown. SS: By the time ACT UP started, we’d been in the trenches for years. ACT UP’s activism was different from what came before. Its main focus was on the institutions of power, like the government, pharmaceutical industry, and media, not on our own community or each other. The activism that preceded ACT UP was the self-empowerment movement for people with HIV, as codified in the Denver Principles and reflected in organizations like the People With AIDS Coalitions. It was comprised of people with HIV helping each other, more of a do-it-yourself kind of movement where we created agencies to provide care and services, to conduct research, buyers clubs. In those first years we had no hope the government was going to save us, so whatever was going to be accomplished we had to do ourselves. CF: Things changed dramatically when the anti-retroviral drugs started to appear. When did you figure out that you were probably not going to die? SS: I was very, very sick in 1995. I was in my thirties but I was planning to die. I skipped my dental appointments, stopped buying clothes, and started thinking of things as “last’—the last time I’d visit a place or see a friend. But when I started protease combination therapy, I knew very quickly that something good was happening in my body. I gradually began to start planning ahead, first a few months, then year by year. I had seen many “new drugs” come and go. I didn’t get overly confident, but I did see, through my work with POZ magazine, that better drugs were coming soon. I was betting on that. CF: What are your thoughts about Truvada and PrEP? There is some controversy around the use of this new “HIV prevention” drug. SS: On an individual basis, if you take it as prescribed, Truvada will work: it will prevent you from contracting HIV. However, I’m not convinced that it’s going to work on a community-wide basis. It could lead to an increase in other STDs, which could lead to an increase in HIV transmission, particularly among people who are poor and in communities of color. We are already seeing, for example, a big spike in syphilis. If people are getting other STDs that greatly facilitate HIV transmission, even as the rest of the community reduces condom usage, then it is reasonable to argue that something like Truvada, in this scenario, could spread rather than contain HIV infection. Having said that, I think anyone who can’t or won’t use a condom absolutely should have access to Truvada. I just wish we had a more sophisticated and wide-ranging conversation about potential unintended consequences. CF: And what about PEP—post-exposure prophylaxis—as another solution? SS: PEP has been used by healthcare workers for twenty-plus years. It’s a 28-day protocol following a needle stick or fluid exposure. There’s also a “non-occupation” post-exposure prophylaxis—a condom breaks, that kind of thing. This has been recommended by CDC for years. You have to start it within two or three days of the exposure, so I’ve advocated distribution of a “starter kit” for these situations to gay men and others who might find themselves at risk. The hypocrisy of the agencies that have pushed PrEP so much but have underplayed other prevention strategies, like PEP, infuriates me. These days, when people are diagnosed, they are likely to know when it happened; they are likely to be aware of having been exposed to risk, so PEP would help in those cases. It is far more analogous to the morning after pill than PrEP is analogous to the birth control pill. CF: How do we get young people today to understand what things were like for our community thirty years ago? SS: It’s important to understand history, but I don’t think talking about “the old days” is the best starting point for HIV prevention efforts today. I think that gets in the way of prevention education with young people. There is this natural human impulse—I have it myself—to grab young people by the collar and say “don’t you know what we went through?” But they don’t want to hear about grandpa’s service in the war. That is not their reality today; the consequences of HIV infection today are profoundly different than they were years thirty ago. When I speak to students, I tell them that even if they get HIV, they are not going to die from it. On the other hand, the message that some seem to hear is either that HIV is the worst thing that can happen to you or that it’s no big deal; you just pop a pill and forget about it. Neither is the right message. The message we should focus on is that HIV is a life-changing diagnosis; it is with you your whole life; it is expensive; it is stigmatizing; it makes intimate relationships complicated and difficult. In short, you should work hard not to get it. But if you do, you can deal with it. I also think narrowly focused HIV prevention education needs to shift into broader basic education about sexual health in a way that is affirming and not fear- or shame-based. CF: Finally, I think you are one of the best examples of combining activism with an entrepreneurial spirit. In looking back over your life and career, how do you assess that mix? SS: I think anybody who puts himself out there as an activist, but is also an entrepreneur who wants to enjoy the fruits of entrepreneurship, as I have, is asking for and should expect heightened scrutiny. You can’t expect respect from a community without also having some accountability, which sometimes includes criticism that might not be fair or that hurts. But it seems like sometimes we are much more willing to criticize an entrepreneur for “making a buck off the community” than we are to apply similar standards to our executive directors, many of whom are now making salaries that are over $200,000, $300,000 or even $400,000 per year. I’ve never made that kind of money—ever—and I don’t have the kind of retirement funds that come with a decade of tenure in those highly-paid positions. Quite frankly, I wish I had been more financially successful in my businesses; if I had, I could have done so much more. When I founded POZ, selling my insurance policies, house, and using all my assets, some of my friends and family thought I had dementia! The publisher of The Advocate told Advertising Age that no one would buy ad space in a magazine on such a grim topic. I wasn’t doing it to make money; I was doing it because I knew it would be important to people with HIV. I doubted if I would ever live to see it become financially successful, but I was determined to live to see it earn respect. A few years ago, I counted up the number of people who’ve worked at my enterprises over the years, and I know that more than a hundred people had their first job where they could be openly queer working at one of my companies. Most of them either already were or became activists in one form or another. I am as proud of that as I am of almost anything else I’ve ever accomplished. Chris Freeman, a longtime contributor to these pages and co-editor of the forthcoming book The American Isherwood, teaches English and gender studies at the University of Southern California.
the movement. Memorializing some of them was important to me in Body Counts. On the downside, I’d say there’s also a kind of nostalgic romanticizing going on. People can be excited about something like the HBO version of The Normal Heart without getting very involved with what is actually happening with hiv/aids today. Watching that film or reading my book isn’t enough. I’d like to see a kind of “truth and reconciliation” commission to provide some accountability from those early years. Perhaps it would even provide closure for some. The harms perpetrated by the Reagan administration and others, including some still in key positions, like Anthony Fauci at the NIH, need to be exposed and understood. That history, and the role of money and corruption, is still untold. And it’s still going on. Where is the accountability? Why are those same people still in charge?
