IN THE PERIOD of the first reports of the new syndrome of immune deficiency (1981 to 1985), before we were certain about the primary role of HIV in the epidemic, sides were taken about putative cause(s), and about what the future held for the epidemic, gay sexual life, and the gay community in general. The range of viewpoints fell into several discernible camps.
First, there was Larry Kramer’s view, which he had already laid out in his 1978 novel Faggots, the image of gay men as obsessed by sex and fucking ourselves to death. Implicit in Kramer’s critique was the assumption that AIDS, the latest and deadliest in a series of STD epidemics in the gay community, was the inevitable culmination of it all.
A second perspective was that of Michael Lynch of Toronto’s paper The Body Politic, who held that the medical profession was trying to re-pathologize gay men following the declassification of homosexuality as a mental illness by the APA in 1973, which came after a century of diagnosis and treatment. Lynch’s view was that homophobes, erotophobes, and some physicians, explicitly including Larry Kramer and me, were trying to foment a “sex panic” about an epidemic whose seriousness was being greatly exaggerated. (Lynch later became an AIDS activist.)
Another perspective was that of Dr. Joseph Sonnabend and his two patients, Michael Callen and Richard Berkowitz, who argued against any notion that AIDS was caused by a new virus or other microbial agent. Instead, they theorized, the epidemic was the result of multiple and concurrent STDs from so much promiscuous gay sex, aggravated by drug abuse, poor nutrition, stress, exhaustion, and depression. My own view in the early years, which was in synch with the information being given out by the Centers for Disease Control (CDC), was that, while a primary viral agent seemed the most likely cause of the emerging epidemic, the epidemiology was still uncertain. What was certain to me is that the epidemic would be a new chapter in a much larger story: the coming together of the various sexual revolutions of women and sexual minority rights, sex education, and STD research and treatment that sexologists were calling “the birth control age.” Finally, there were the eternal religious zealots, who assumed that the epidemic was God’s punishment for evildoing, and other conservatives who subscribed to the old psychiatric views of gays as sex-besotted, mentally ill, and predatory. All of these perspectives turned out to be both far-sighted and short-sighted, right and wrong in varying degrees and from various vantage points. But we need to look back in order to look forward, especially with regard to another major development in the history of AIDS: what came to be known as AIDS denialism, the phenomenon of denying the primary role of HIV as the cause of AIDS. Eventually, it became the subject of a 2009 book, Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy, by Seth Kalichman, as well as articles, websites, blogs, and so on. Still, for a movement that has loomed so momentously over the past three decades, there is surprisingly little historical perspective on HIV denialism. There’s virtually no exploration of its origins in Kalichman’s otherwise important book. In fact, it may be that this history is the most important of the unwritten chapters on the AIDS epidemic. The first perspective of what the new epidemic was all about, held by Larry Kramer, quickly mated with the version held by Joseph Sonnabend, Michael Callen, and Richard Berkowitz. Although it made less sense in terms of the other groups affected by the epidemic—hemophiliacs, Haitian immigrants, and injection drug users—Sonnabend and the others declared with premature certainty that the disease was being caused by a confluence of co-factors rather than a new infectious agent; indeed they ridiculed any theory of a “new killer virus.” They believed that the epidemic in gay men was the result of multiple, sequential, and concurrent sexually transmitted diseases and co-factors such as stress. As for the Haitians, hemophiliacs, and drug addicts who were getting sick, they theorized that these groups were likewise suffering from multiple diseases related to poverty and drug abuse. Regardless of the theories of origin, their indictment of promiscuity was in synch with Kramer’s view—and that of the mainstream conservative intelligentsia. From the beginning, to me, the multifactorial theory seemed troubled. However, its boosters were the first to conceptualize practices that eventually became the basis for the safer sex movement. What they were doing was in this sense important and salutary. My own doubts about this theory—and their increasingly fanatical insistence upon it—led me to keep my distance from these early activists. And then there was the issue of Larry Kramer himself. Kramer was widely known in gay circles because of his screenplay for the film Women in Love and for his novel Faggots, but he was not known to be involved in the gay community or its political initiatives. He had never participated in a demonstration for gay rights, joined a gay organization, or marched in a gay pride parade. His attacks on the community were without parallel in their ferocity, and even those of us who knew him personally couldn’t be sure that he wasn’t some kind of self-hating gay guy spinning out of control. This is how many reacted to Faggots, which, however dazzling some of its evocations, insights, and humor, doesn’t offer a single positive image of gay life. Not surprisingly, Faggots, published at a crucial and fragile moment in the early gay civil rights movement, was held up by homophobic conservatives as an example of what gay people were like. And now, with AIDS, could it be that Kramer was reveling in the unfolding disaster in retaliation for the community’s antagonistic response to Faggots? The concerns about where Larry Kramer was coming from persisted through the early period of AIDS and into the founding of Gay Men’s Health Crisis. As his involvement in the community and his activism blazed forward, so did his credibility. As the epidemic unfolded, Kramer would put himself on the line for his beliefs with a clarity, bravery, and effectiveness that have no parallel in the history of the gay community and grass-roots health activism. In retrospect, keeping my distance from Sonnabend, Callen, and Berkowitz—and, to a lesser extent, Kramer—was a mistake. Over time, as HIV was shown to be the cause of AIDS, notwithstanding their intransigence on this matter for more than a decade, these three kept up their considerable community involvement in grass-roots organizing for PWA empowerment and research. Sonnabend became a co-founder of AMFAR, Callen of the PWA Coalition. They worked with many factions of the community on various initiatives. Their work on safer sex was also applicable to the single-virus model of contagion. In 1983, they published a groundbreaking monograph, “How To Have Sex in an Epidemic,” on safer sex practices and techniques. Their work addressed core issues of promiscuity and spread in a way that the vague recommendations from the CDC failed to do. In this sense, they were heroes and deserve to be recognized as such. And yet, their insistence on multifactorialism as cause of the epidemic would become the basis for a deeply troubled, dangerous, and ultimately catastrophic ideology. LARRY KRAMER AND I both celebrate our birthdays in June. Somewhere around June 25 (Larry’s birthday) in 2009, he and I had lunch in New York, and I gave him a DVD called The Age of AIDS, the two-part, four-hour PBS Frontline documentary on AIDS that was made in 2006. The documentary does not mention Larry or even ACT UP, so it’s far from comprehensive. In fact, it could almost be viewed as homophobic for ignoring the monumental contributions of ACT UP, which seems doomed never to receive the Nobel Peace Prize it deserves. The documentary’s main focus was on the global AIDS pandemic, whose victims are overwhelmingly heterosexual or bisexual. Its most disturbing and shocking finding was that more than 300,000 people died early deaths in Africa, notably in South Africa, between 2000 and 2005 due to AIDS denialism. South Africa’s President Thabo Mbeki had entrusted his health policy to an advisory panel that included leading denialists, whose theories were exploited to bar access to life-saving treatments for tens of thousands, despite protests from physicians and scientists around the world. When I asked Larry for his reaction to the documentary in general and this finding in particular, his response was somewhat unnerving. Instead of decrying the role of denialism in South Africa, he cited a book called Impure Science: AIDS, Activism, and The Politics of Knowledge (1996) by Steven Epstein. Published by the University of California Press (Berkeley), Impure Science was widely acclaimed by distinguished scientists and prestigious publications such as The New York Times and The New England Journal of Medicine. The book’s overall subject is the intersection of social and political activism with mainstream medicine and science. Written in 1996, five years prior to the catastrophe in South Africa, Epstein’s book isn’t alarmed about the foothold gained by denialists. Instead, in true academic fashion, it scrupulously withholds judgment of all factions involved in AIDS research and politics. Meanwhile, what Larry Kramer’s experience has taught him is that even the most established and credentialed science and medicine are not to be trusted, and that one should at least consider the viewpoints of critics of established opinion, however unorthodox. This is very much in line with Epstein’s analysis. So while neither Kramer nor Epstein is in any way endorsing denialism, neither are they especially concerned about its influence. Recalling the brouhaha that took place between Robert Gallo and Luc Montaigner over the discovery of HIV, who can fault such skepticism, which is Kramer’s stock in trade? But in retrospect Impure Science turned out, however inadvertently, to be a sophisticated apologia for denialism. In a sense, it’s like an academic analysis of the debate between evolution and creationism. Have the evolutionists actually proved that creation didn’t happen as the Bible says? Where are the scientific studies on that? So I was surprised and disappointed by the uncharacteristic dispassion of Larry’s response. While Larry has no history of denialism, and ACT UP explicitly rejected denialism, it surprised me that he seemed disinclined to expend much time or energy discussing this chapter of AIDS. While Sonnabend, Callen, and Berkowitz are widely known both for their influence and for their multifactorialism and early denialism, I don’t think I’ve ever seen a retrospective, say, in POZ magazine, questioning the role their theories played in later denialist developments. In part, this may be because Sonnabend was such an otherwise popular and important AIDS activist, and because he eventually distanced himself from the denialist movement. Berkowitz, for his part, now acknowledges that his life was saved by HIV treatment. But I think the larger reason is that their theory was sold along with a larger bill of goods that was such a linchpin of early AIDS activism: a widespread skepticism of mainstream medicine in general. When I asked David France, who writes about AIDS for the mainstream press, about this disconnect, he steered me to a piece he had written in Newsweek in 2000, “The HIV Disbelievers,” about extreme denialist Christine Maggiore. This article, written prior to the developments in South Africa, notes that Maggiore “discovered the work of Berkeley virologist Peter Duesberg, whose belief that AIDS is caused by lifestyle choices like promiscuity and drug use rather than infectious agents, has long been dismissed by his peers.” But France makes no reference to the close kinship between Duesberg’s theory and that put forth by Sonnabend during most of that earlier period. The fact that these activists and writers—Poz editor Sean Strub, David France, Kramer—have gone easy on denialism is perhaps understandable. However, the reticence around HIV denialism would end up playing a role in the huge die-off that occurred in South Africa. This wasn’t just South Africa’s problem, or the fault of one fanatic, Peter Duesberg, or one recalcitrant government. At the risk of sounding like Larry Kramer, we are all to blame for it. In our silence about the seriousness of this issue, in our relegation of it, we were all enablers. In fact, and sad to say, there may be fewer better examples of the truth of the ACT UP slogan, “Silence = Death.” Obviously, AIDS is a complex disease, affected by multiple factors. Different people get differing secondary infections. Like any disease, AIDS can be affected by diet, stress, exercise, other concurrent diseases, and so on. In this sense, all diseases are multifactorial. While Sonnabend no longer goes around saying that the idea that AIDS is caused by “some killer virus” is crazy, and now acknowledges “a role for HIV,” he continues to promote his multifactorial perspective as if there were little difference between what he said originally and what has turned out to be the science of HIV. Sonnabend did, beginning in 1998, take that important step of explicitly distancing himself from the denialist movement. And Richard Berkowitz acknowledged in his film Sex Positive that his life was saved by being treated for HIV in 1995. Callen, I don’t believe, ever recanted his denialist beliefs. He did, however, continue his front-line activism and leadership in the PWA empowerment movement. In this sense, the Callen-Lorde Center, the gay health center in New York, is aptly and deservedly named. Because of his denialism, however, the choice of that name remains controversial. If and when denialism re-emerges in some major capacity, it can be said that a leading New York AIDS treatment center is named after a leading proponent of the theory that HIV is not the cause of AIDS. This was also the indirect impact of Epstein’s Pure Science. It provided a patina of credibility to Peter Duesberg, whose denialism is believed by many to have been key to the catastrophe that unfolded in South Africa. In retrospect, there is perhaps no better barometer of the power of the denialist movement to sway common sense than the reception of this book, in which, according to a review in the New England Journal of Medicine, the author is said to “avoid taking sides, although his personal respect for Duesberg seems evident.” IF SONNABEND and his colleagues were the originators of a denialist posture on the cause of AIDS, the disseminator of this perspective was Charles Ortleb, publisher of Christopher Street, a gay magazine founded in 1976, and especially The New York Native, a weekly newspaper founded in 1980. The latter published the first reports on AIDS by me, Kramer, Callen, Berkowitz, and others. Following the work of Ortleb in the Native over time provides what may be the best window on the early evolution of HIV denialism and its transformation into cult fanaticism. As many will recall, Ortleb made great contributions to the gay and AIDS communities for more than a decade via the Native and Christopher Street. After HIV was discovered as the cause of AIDS in the mid 80’s, however, he began drifting ever deeper into levels of isolation and paranoia that can only be described as clinical. By the end of the decade, he seemed completely out of control, advancing bizarre theories about “Chronic Fatigue Immune Dysfunction Syndrome” and Plum Island biological warfare experiments involving dolphins, among other plots. At some point he started putting AIDS in quotation marks. Eventually, no one would have anything to do with him except hard-core denialists. Starting with Peter Duesberg, whom he extensively promoted—and who in turn cites Sonnabend as his early inspiration—Ortleb fostered and coddled one crackpot theory and theorist after another. (In 2005, he re-emerged in the on-line pages of Energy Grid discussing his most recent project, a film called The Last Lovers On Earth, based on satirical pieces he had written. “Folks who should know better have looked the other way while the AIDS establishment and the AIDS activists have humiliated and cowed the entire gay community,” he declared.) Among the other theorists and commentators promoted by Ortleb was John Lauritsen, who also had an early history of contributing in positive ways to the gay community and was similarly inspired by Sonnabend to become an HIV denialist. Lauritsen, who favorably reviewed Epstein’s Impure Science and who remains an extreme denialist, provided the Native with its most extensive coverage of Ortleb’s take on “AIDS” from the late 80’s to the mid-90’s. Thoroughly discredited, The New York Native finally collapsed in 1997 (Christopher Street had folded in ’95). Larry Kramer would later charge that Ortleb and the others had blood on their hands—the blood of the many gay men who read their denialist ravings in the Native and chose to forego treatments that were available. One of those treatments was AZT, which was one of the earliest and most effective of known treatments. While potentially toxic even in therapeutic doses, AZT proved effective in preventing the development of AIDS in newborns when given to pregnant mothers, and worked well as an adjunct with other antiviral medications in treatment regimens. But in the period of its earliest availability, in the mid 1980’s, it was aggressively and repeatedly denounced by Sonnabend, Callen, and Berkowitz as a “poison.” “Drano,” Callen called it, while Sonnabend described AZT as “incompatible with life” as late as 1998 in an interview with POZ magazine. Underlying this advice was their belief that AZT was being prescribed to treat a bogus “killer virus” that didn’t exist or didn’t matter. As late as 1998, Sonnabend waffled in responding to Sean Strub’s question about the “viral scourge” in the POZ interview: The notion that there was a sexually transmitted killer virus appealed to many different constituencies: people who like “family values,” people who hate gay men, prostitutes and junkies, people who love to think that extramarital sex can kill. Some gay men liked it, too, because it deflected attention from all the sex taking place in the bathhouse scene. … When something new comes along, scientists will try to make theories to explain the mystery. But one can account for things that are new by recombining old influences in new ways. So I felt there was a connection between the STDs and AIDS. The question was how? And that’s when I put together what I still think is a plausible interactive model for how this disease could come about without the need to postulate anything new. Leaving a legacy of advocacy on behalf of persons with AIDS, Michael Callen died in 1993 at the age of 38. On AZT and HIV he remained defiant, stating: “The HIV paradigm has produced nothing of value for my life and I actually believe that treatments based on the arrogant belief that HIV has proven to be the sole and sufficient cause of AIDS has hastened the deaths of many of my friends.” Had he lived longer, perhaps Callen would have followed in the path of his mentor and hero, Joseph Sonnabend, who has acknowledged at least “a role for HIV” in the pathogenesis of AIDS. “Of course I miss Michael,” Sonnabend said in the POZ interview. “He was my mouthpiece as it were. You know, I’m a rather reserved person. I don’t like being in the public eye, but I feel I’ve had things that needed to be said. And Michael was a brash person who loved fame and all of that. So, I wrote his lines on medical and scientific issues, basically.” Since that time, Sonnabend has come some distance, not only in acknowledging the role of HIV in causing AIDS, but also in distancing himself from denialism. In 2007, he criticized denialists for falsely implying that he supports their position: “Before HIV was discovered and its association with AIDS established, I held the entirely appropriate view that the cause of AIDS was then unknown. I have successfully treated hundreds of AIDS patients with antiretroviral medications, and have no doubt that HIV plays a necessary role in this disease.” When Sonnabend says the cause of AIDS was unknown, implying that he had no theoretical view, he is being disingenuous. It would be better if he acknowledged the truth that is widely out there in his own statements—that he overreached in his earlier certainty that multiple STDs were the cause of the AIDS rather than a primary viral agent. Since 2007, Sonnabend has not only spoken about HIV as the cause of AIDS; he has been outspokenly critical of denialism. In his POZ blog he criticized the 2009 documentary House of Numbers as an HIV denialist film. In the course of this entry, he acknowledged that he had served as a member of Mbeki’s panel on AIDS in South Africa (whence Sonnabend hails): “As I have experienced when I was a member of President Mbeki’s panel in S. Africa, it is impossible to argue with those who hold such denialist views. They are impervious to reason. It is therefore pointless to engage them in discussion.” DR. PETER DUESBERG has expressed sadness that Sonnabend felt such pressure that he had to retreat from his original belief that there is no single virus that causes AIDS. Duesberg, a member of the U.S. National Academy of Sciences and a professor of molecular and cellular biology at the University of California at Berkeley, is the best-known denialist at work today. In 2000, he served with Sonnabend on the advisory panel to Mbeki. In 2009, facing questions about his credibility as a scientist, Duesberg published a refutation of accusations that he played a crucial role in the catastrophe in South Africa. This was published in the journal Medical Hypotheses but later retracted by the journal’s publisher, Elsevier, over accuracy and ethics concerns. In the wake of this controversy, the University of California at Berkeley began an investigation of Duesberg, which it dropped earlier this year. In the end, it became clear that AIDS denialists are essentially a fanatical cult. They are not susceptible to reason or to scientific evidence. Throughout the unfolding of the deaths in South Africa, a strong stance was taken by the medical community in protest of the Mbeki regime’s intransigence. This included a petition from leading physicians and scientists denouncing in the strongest terms what was happening. It had no impact. In response to the inclusion of AIDS denialists on Mbeki’s panel, the Durban declaration was drafted and signed by over 5,000 scientists and physicians, describing the evidence that HIV causes AIDS as “clear-cut, exhaustive and unambiguous.” Two independent studies have concluded that the public health policies of Thabo Mbeki’s government, shaped in part by Duesberg’s writings and advice, were responsible for over 330,000 excess AIDS deaths and many preventable infections (171,000, by one estimate), including those of infants. Even Nelson Mandela, whose son died of AIDS in the South Africa debacle, was unable to influence these policies. In 2008, Mbeki was finally ousted from power, along with his health minister, and life-saving antiviral medications were again widely available. “The price of liberty is eternal vigilance” is a familiar bit of wisdom. But when all is said and done around the issue of AIDS denialism, there can be no muzzling of free speech, especially in science and medicine. Like the academics and scientists who wanted to find some way to censure and to silence Peter Duesberg, we can’t do this without becoming fascists ourselves. And because of works like Epstein’s Impure Science, and credentials like those still held by Duesberg, we must tiptoe all the more carefully around common sense and better judgment, even to the point of allowing many people to die. In deference to free speech and due process, we have to tolerate the promulgation of theories like those of Peter Duesberg. But it may be that the main reason we still can’t shut Duesberg up isn’t the free speech imperative as much as it is the ongoing apathy and silence of so many leading players, especially GLBT activists, writers, and leading voices in the gay and AIDS activist movements. Needed in response to what Peter Mandelson has called “genocide by sloth” in South Africa was not Steven Epstein’s book but the Larry Kramer of ACT UP, someone to broadcast at the top of his lungs what was really going on. With any luck we will have learned some lessons from the history of denialism so that the next time it strikes, we can strike back with weapons more potent than polite debate. If and when you encounter someone who has been indoctrinated into the cult of denialism and is forgoing life-saving treatment, at least there is now an experience and some resources with which to confront the situation. However, be advised that your efforts here can get you branded as an Inquisitor, allegedly doing to denialists what the Inquisition did to Galileo. Is another major outbreak of denialism likely? Those who do not learn the lessons of history are condemned to repeat it. But history does keep repeating itself, as the ongoing history of genocide since World War II attests. And a lot of that repetition—in places like Cambodia, Rwanda, Kosovo, and Darfur—has been a kind of genocide by sloth, accomplished with the collusion of silence and passivity on the part of those who know better and could make a difference. From this perspective, what happened in South Africa could recur—if we let our vigilance down. Lawrence D. Mass, MD, is a cofounder of Gay Men’s Health Crisis and the author/editor of four books. He wrote the first news report on what came to be called AIDS (in The New York Native, May 18, 1981). He is a specialist in addiction medicine in New York City.
