TRUE DEMOCRACY SPRING 2001 TABLE OF CONTENTS
A BRIEF HISTORY OF AIDS DOGMA
by Richard Berkowitz
"My worst fear is that unless I, and others of my generation, pass on what we learned from the first gay sexual revolution (of the 70's)--frankly, and without the distortions of nostalgia-unless we talk honestly about what worked and what didn't and why, we may doom future generations to repeat our mistakes.""
--Michael Callen, father of the people with AIDS self-empowerment movement
"The last really deep conversation I had with my dad (scientist) was between our T-shirts. His said science is truth found out. 'Mine said 'The truth can be made up if you know how.'"
--from "The Search for Signs of Intelligent Life in the Universe" by Jane Wagner
I consider my credentials as a homosexual to be impeccable. After months of contemplating suicide, I came out in 1974 at the age of 18 as an openly gay writer on my college newspaper. Two years later, one of my articles sparked New Jersey's first gay rights demonstrations. And, like some young gay men who came of age in the pre-AIDS 70's, when I wasn't in a relationship, I had sex like there was no tomorrow. For me, promiscuity was a radical response the heterosexist dictatorship.
Since moving to New York City in 1979 I have lived the life of a "top" SM hustler, and live in one of the gayest neighborhoods, in Chelsea. I shop in gay stores; I eat in gay restaurants. I frequent gay bars and take vacations at gay resorts. I'm devoted to my close circle of long-time friends whom I regard as my chosen family; all of them are gay or feminist or both. I can't define the term "gay community," all I know is I belong.
In August 1982 I was diagnosed with a severe immune deficiency and became a member of New York City's very first support group for gay men with AIDS. In the group I befriended AIDS activist Michael Callen and together we wrote and published the first safe sex manifesto, a self-help pamphlet titled, "How to Have sex in an Epidemic: one Approach." I am the last survivor of a group of 11 gay men who launched the people with AIDS self-empowered movement at the fifth National Lesbian/Gay Health Conference held in Denver in June 1983. I've been marching and protesting and organizing for two long decades. So why is it that in the age of AIDS when a tragedy of such enormous proportions has brought an unprecedented international unity to gay men and lesbians, that whenever gay people start talking about AIDS, I suddenly feel like I'm trapped inside a MOONIE convention?
My answer to this painful question is that I cannot go along with the gay community's party-line on AIDS. I never have, and I never will and I believe that this is why I am still alive and well.
My story--the story of my survival--is the story of resisting with fierce skepticism a dogma which I witnessed being born in the early days of the epidemic. I call it "the AIDS mantra" and it
goes like this
1) The AIDS virus causes AIDS.
2) It takes only one exposure to catch it. 3) Gay men with AIDS were just unlucky.
4) Everyone is at risk.
For 13 years this dogma, which was established by a startling alliance of gay men, right-wing advocates for "family values," government and other scientists who seized an opportunity to capitalize on fears generated by a putative killer virus, has shaped the way we think and speak about AIDS. Question this dogma and you are attacked and dismissed as ignorant or anti-gay.
This is the story of how a community armed with all that it needed to respond rationally to a health emergency opted instead for simplistic answers driven by many different agendas and how a community founded, in part, on the American ideal of respect for diversity conspired to deceive itself and censor painful questions about some of our lives.
for example, certain segments of the gay (male) community who were unwilling to confront lifestyle contributions (to the development of AIDS in gay men), preferred a simple explanation that infection with a single virus could happen to anyone; certain scientists, notably retrovirologists, who had a great deal to gain for themselves and their laboratories; the religious right for whom the killer virus theory meant that even a single encounter with a prostitute could be lethal.
If ever there was time to face up to the dogma and question what we have been told about AIDS, it is now. At the conclusion of last year's 1Oth International Conference on AIDS some of the leaders in AIDS research said they needed to go back to square one because progress in understanding [how to treat] AIDS has been going slowly. While they do, it might be useful to review AIDS history and see if and where we went wrong in understanding this health crisis.
Where We Are Today
In 1984, Margaret Heckler, President Reagan's Secretary of Health and Human Services announced with great fanfare that "the probable cause of AIDS has been found" and that a vaccine against "the AIDS virus" (HTLV 3, aka LAV and now called HIV) was on the way. But new, in 1995, most researchers are uncertain whether or not a vaccine for AIDS will ever be developed that is both safe and effective. And even though billions of dollars of research into HIV has yielded superb insights in molecular biology--we stilI have little idea how the disease develops and no idea how to retard the progression of AIDS.
After her announcement, Heckler introduced the NH's Dr. Robert Gallo as the man who had discovered "the AIDS virus." The dogma that quickly emerged was that his new killer virus directly killed T-cells, thereby producing AIDS. But, as we now know, credit for the discovery of HIV is shared equally with Dr. Luck Montagnier of the Institut Pasteur in Paris. Montagnier has come to believe that HIV cannot possibly cause AIDS by itself. He is studying the role of mycoplasmas (a kind of microorganism) as a co-factor in the development if AIDS. In addition, it appears that Dr. Gallo has changed his views since the Heckler press conference, in a Newsday
article "Seeing the Light: AIDS Scientists Shift Their Focus" (Sept. 6, 1993) it stated that "even Dr. Gallo...whose own work has focused on the virus now thinks most (immunological) damage isn't directly done by HIV." Gallo is not studying whether HIV indirectly causes AIDS in part, by inducing the production of cetaceans (regulatory chemicals produced by cells of the immune system.) Though an out of court settlement was reached in which Montagnier and Gallo would share equal credit for the discovery of HIV, the virus was actually discovered by a woman. Dr. Francois Barre-Sinoussi of the Institut Pasteur.
Panic over AIDS began to spread when the media, scientists, and first wave of AIDS activists colluded to say that no one was safe from AIDS. But in spite of all the claims that AIDS would spread sexually to engulf the heterosexual population, by 1994 AIDS cases claimed to have been transmitted to heterosexual men from women still add up to less than 1 per cent of total AIDS cases, and the disease has remained largely confined to the original risk groups (sexually active gay men, IV drug users who share(d) needles, hemophiliacs, blood transfusion recipients and some babies of mothers who have AIDS). AIDS was recognized more than 13 years ago and cases have been documented (mostly through stored frozen samples) as far back as the 1950's. How much longer should we wait for a heterosexual explosion of AIDS in Western nations?
Predictions were also made that female prostitutes would spread AIDS to heterosexual men who then in turn would infect their wives, but in his recent book, Rethinkina AIDS: The Tra~ic Cost of Premature Consensus, Robert Root-Bernstein, PhD. a recipient for five years of the prestigious McArthur Prize fellowship, reported that, "Many...studies confirm that IV drug abuse, rather than (heterosexual) prostitution, is the major risk factor for both HIV and AIDS among women in the United States and Europe..." and that "sex with a prostitute is not even listed as a risk category by the Centers for Disease Control."(It's a shame many of us get our information from tabloid talk shows and juicy sound bites on the news instead of reading books. See for example Good Intentions...How the Government and Big Business are Corrupting the Fight Against AIDS," The MYth of Heterosexual AIDS, The AIDS Dissidents, AIDS Inc., The HIV Myth, Survivina AIDS, etc) While it's clear that women can get AIDS from their male sexual partners, they appear to pose a very low risk to their sexual partners. This may help explain why in New York City there are only 250 out of more than 53,000 cases of AIDS in men who claim their only risk factor is sex with a woman. Can we really expect every person with AIDS to admit they enjoyed gay sex or stuck used needles in their arms?
A decade of fighting, funding, and researching hasn't helped us understand much, if anything, about AIDS, even though we know more about HIV than any other virus in the world. This became evident to most people, including mainstream reporters, at last year's international conference on AIDS held in Berlin where the results of a major study on the effectiveness of AZT, the European Concorde study, found that the official recommendation to give AZT to asymptomatic (i.e. healthy people) was a lethaI mistake based on scientific studies which were not sound. This recommendation was
made before study results were published and properly reviewed and critiqued. Furthermore, the study found that AZT did not prolong life in people with AIDS. For those of us who saw loved ones suffering from the awful side effects of AZT's extreme toxicity, the results of the Concorde study provided was a brutal wake up call to activists and people with AIDS on the need to remain skeptical of the quality of the government's research efforts as well as of our own activists.
One might have hoped that the realization that AIDS reporters and activists had been mislead by the optimistic claims made by the AIDS research establishment would have led to a reevaluation of those in charge, but sadly, the same people are still making official recommendations before the study results are readily available. As a result, as Celia Farber reported in SPin AZT is now being given to pregnant women--mostly poor and black women to prevent HIV infection in newborn infants despite the fact that the data supporting this therapy practice had not been published. Our trust in these AIDS research leaders apparently has been misplaced, but they are still running the show. The message to these scientists has to be that mistakes don't matter and incompetence is forgivable.
The one single advance for people with AIDS is prophylaxis for example, taking medication to prevent diseases, like PCP pneumonia, which can kill people with AIDS didn't even come from the AIDS research establishment--it essentially came from doctors like Joseph Sonnabend, who were treating patients with immune deficiencies in the 1970's, and patient advocates like Michael Callen. Since PCP is still a leading cause of death among people with AIDS, even though it is almost completely preventable, this means that there are physicians who aren't ensuring that their patients are receiving PCP prophylaxis, and this in turn is another indicator of the failure of the AIDS research leadership. Finally, after literally tens of thousands of unnecessary deaths from PCP, Gay Men's Health Crisis, Inc. (GMHC), a pioneer AIDS service organization, has launched a public service campaign in New York City subways and on television to tell people to get prophylaxis.
As others have observed, among some of those most concerned and involved around AIDS, there is a religious-like attachment to their belief that HIV=AIDS=DEATH. In a terrifying crisis like this one, some people are drawn in by fear to paternalistic experts both gay and straight who have been telling us that HIV is the virus that is the cause of all the suffering and death we see from AIDS. A simple explanation for an overwhelmingly complicated disease syndrome has formidable appeal, in part, because it holds out the hope of a simple and singular solution, like a vaccine or an antiretroviral drug. As many AIDS dissidents have learned, questioning the foundation of AIDS dogma, that HIV=AIDS, can be like asking a fundamentalist to question whether god exists.
Questioning AIDS dogma intelligently must also take into account an important coincidence. The technology to detect and measure the immune system's T-cells came into general use around 1980, and AIDS was recognized in 1981. Here's an analogy that may help illustrate the significance of this coincidence. If scientists developed a new telescope that was more high-powered
than any previous one and looked out and saw planets they had never seen before, would it make those planets new, or just newly recognized? Equally, the techniques to detect retroviruses were developed not long before AIDS was recognized. This analogy which speaks to something newly recognized but not necessarily new may someday prove to be the case with AIDS; there is already some evidence which suggests that AIDS existed in a limited fashion well before the 1980s.
Finally, there is the matter that conclusions claiming to be scientific are based on difficult personal testimony about such socially charged issues as sex and drug use. When the greatest risks for AIDS are IV drug use (which is illegal in every state) and anal intercourse (which is illegal in 24 states) to think that people facing a life-threatening illness and the most stigmatized disease of our time will tell doctors and scientists the whole truth is as best naive and maybe even self-deluding.
Consider what can happen when public policy debate relies on such testimony. On June 19, 1994, 60 minutes reported on the case of a Florida dentist who was accused of infecting six of his patients with "the AIDS virus." So far his former patients have collected an estimated $10 million in damages, but when the dentist's insurance company investigated, they found evidence of other risk factors such as IV drug abuse and high risk sex. Who can forget the emotional testimony of Kimberly Bergalis who told Congress, "I did nothing wrong, yet I'm being made to suffer like this. My life has been taken away." Her testimony helped launch a nationwide campaign to test health care workers and changed the way many dentists practice across the country. But as 60 Minutes discovered, Bergalis was diagnosed with sexually transmitted vaginal warts and in the report by investigators for the dentist's insurance company it stated, "[Bergalis] is concerned that if she tells us her risk, her mother would find out" and that there would be "serious negative impact."
Several years ago a group of scientists, including several Nobel laureates, formed the Group for the appraisal of the HIV/AIDS hypothesis, to challenge the theory that HIV alone causes AIDS. On a recent segment of ABC's Dav One news magazine show, Nobel prize winning molecular biologist Walter Gilbert of Harvard University said, "a major thing that concerns me (about) calling HIV the cause of AIDS is that we do not have roof of causation.. That's a major reason to be concerned...(and) no good reason to base the entire research effort on the HIV theory." Kary Mullis, who won the nobel Prize in Chemistry last year, has stated that he believes that AIDS results from "an enormous level of exposure to human viruses and bacteria."
In November 1993, science correspondent Neville Hodgkinson of the Sunday Times of London observed, "...the response to articles reporting scientific challenges to the HIV theory of AIDS has been to attempt to marginalize the challengers rather than to answer their arguments. In fact, there may now be hundreds of scientists who no longer accept the HIV-AIDS hypothesis."
According to Joseph Sonnabend, MD, Medical Director of the Community Research Initiative on AIDS, "It's my belief, essentially, that we don't know the cause of this disease. I know
it's a frightening, horrible thing to say because I think we find uncertainty troubling. But there's nothing wrong with admitting that we don't know. The acceptance of ignorance is the beginning of knowledge."
The History of AIDS Dogma
To understand how we got to where we are today, we need to go back to the beginning. Dr. Sonnabend's experiences serve as a good vehicle for understanding what went wrong in the history of AIDS. A good way to understand history is to see how it gets rewritten.
Last year, NBC's "Dr. Max" Gomez interviewed Gay Men's Health Crisis co-founder Rodger McFarlane about the positive impact safe sex education was having on preventing AIDS in the sexually active segment of the gay community. "Doctors told us that it looked like AIDS was sexually transmitted, but no one would say that. They didn't know the cause. They didn;t know it was a virus; no doctor in the country would step up and say...'tell people to change their sexual behavior' ...no one would say it."
McFarlane, one of the earliest AIDS activists, certainly captured the tenor of those early days, except for one noteworthy detail: there was one doctor who did step up to say what no one wanted to hear ( including key leaders of GMHC with the notable exception of Larry Kramer) and Dr. Sonnabend would pay a high price for being the first to unequivocally tell gay men at the height of the sexual revolution that, until we learned more about AIDS, the lifestyle of bathhouses, backrooms, and multiple partners had to stop.
It was not the lifestyle per se that was being questioned but rather the opportunity it gave for the development of this disease. In fact, as more became known Sonnabend felt safe sex guidelines could be promoted. As a consequence, Callen and I produced and distributed the first safe sex guidelines intended for sexually active gay men. Interestingly, these guidelines proved to be almost identical to those later promoted by those who were primarily concerned with stopping the spread of "AIDS virus."
But the response of some in the gay community to Sonnabend in 1982 was absolute contempt. People seeking information from GMHC's hotline were advised to steer clear of Dr. Sonnabend. When GMHC published their comprehensive bibliography of AIDS research, which listed everything that had been published on AIDS, including articles as short as a single paragraph, Dr. Sonnabend's published medical reports, which included the first observation of the correlation between a history of sexually transmitted diseases and T-cell abnormalities and the first to call for a change in sexual behavior were omitted by GMHC's director of publications (and board member) Nathan Fain.
At first, Sonnabend didn't know what to think. After all, an article about poppers which appeared on the same page in The Lancet (March 17, 1982) as one of his reports was listed in GMHC's bibliography. Sonnabend didn't realize at the time that this omission was just a taste of things to come.
As for Fain, he went on to cover AIDS for the Villaae Voice and wrote the first PBS AIDS documentary, "Portrait of an Epidemic." Two reviewers noticed something Sonnabend had already
learned. In The New York Times, John Corry observed, "The selection of the victims is skewed. In giving us one representative from each group in the population that is threatened, the documentary implies that members of those groups are all equally threatened. This is simply untrue. (The makers of this documentary) are starting a myth of their own...The soulsearching in the gay community over the association between promiscuity and an increased vulnerability of AIDS is ignored." And in the Villace Voice, reviewer Tom Carson wrote "Portrait" goes along with the government's blatantly political announcement that "the" virus has been isolated virtually endorsing...the claim that a vaccine could be developed in no more than a year--which you don't have to a scientist to know is, in all probability, a cruelly unlikely hope...The word 'promiscuity' gets mentioned, by my count, once. I realize how touchy all this is--but surely, a choice between keeping Jerry Falwell at bay on one hand, and possibly helping to save lives on the other, is no choice at all." Carson's point was tragically lost on AIDS activists whose early work in the media helped shape the way the community would think and speak about AIDS to this day.
With their world collapsing all around them, seeing friends who were often like family suffering and wasting away in the prime of their lives and no knowing if it would happen to them, it was too unbearable to confront the possibility that the lifestyle we had embraced and encourage was responsible for this horror. Yet, it was precisely these people, some of whom had promoted promiscuity as the zenith of gay male liberation, who were among the first to take charge. This meant that their inability to face this responsibility guided the community's subsequent response. As Callen observed, "There is nothing harder than admitting you may have harmed your own people." Of course, in encouraging this lifestyle they could not have known that it contained the seeds of the epidemic to come.
Unfortunately, sex and "promiscuity" had become the dogma of gay male liberation for many in the 1970's and all through the early years of the emerging epidemic, sexually active gay men, myself included, were steeped in a deadly denial [I know because I was part of it]. Dr. Sonnabend became the early messenger some say men wanted to silence.
History is never kind to those who try to hurry it, and it certainly hasn't been kind to Dr. Sonnabend, the man who invented safe sex. That achievement alone has probably saved more lives than any other response to the AIDS crisis so far. But the invention of safe sex was a mere offshoot of what some consider his most important (and most ignored) achievement. In 1983 he published in The Journal of the American Medical Association his multifactorial model, a theoretical framework which suggested that AIDS in gay men could be the result of repeated rectal exposure to sperm from many different partners, which also included the risk of multiple exposures to common viruses, most notably cytomegalovirus (CMV), through receptive anal intercourse, along with other factors. (CMV had risen to epidemic proportions because of the promiscuity of the 70's.)
Naturally, in a multifactorial model there is certainly room
for other possible contributing immunosuppressive factors, like recreational drug use. No single factor in this model "causes" AIDS on its own. Of course CMV doesn't cause AIDS; it had been around forever. Recreational drugs also have a long history preceding AIDS. Many drugs have know effects on the immune system, just as many common viruses do. With respect to poppers, it is remarkable that AIDS and Kaposi's sarcoma are seen predominantly in gay men and the use of poppers is more or less confined to this group.
Before opening his private practice in the West Village in the 1970's, Sonnabend had spent 20 years as a trained virologist and was a noted pioneer in the field of interferon research. Later in his career he became an expert in infectious diseases, specializing in sexually transmitted diseases. He was also a professor of medicine and microbiology. Drawing on his diverse scientific background he explained in his model that "the pathways to immune deficiency may be many and varied, but the diseases which could result may be the same."
AIDS activist Michael Callen, who was one of Sonnabend's patients, offered this analogy to the lay person: "If a person has a heart attack, they don't think this must be from that pat of butter I put on my toast last Tuesday," heart disease is understood as a multifactorial process. Because it is seen as a disease afflicting white men, well-funded research has led to our understanding that many factors contribute to heart disease. These include poor diet, smoking, stress, lack of exercise, genetics, increasing age, etc. From the beginning Sonnabend argued that AIDS was multifactorial too.
His model suggested that if the tens of thousands of sexually active gay men who were predicted to be at risk for AIDS changed their sexual behavior in time, some might avoid developing fullblown AIDS. At a time when author Edmund White, one of the great chroniclers of the gay 70's remarked, "gay men should wear their sexually transmitted diseases like red badges of courage in a war against a sex-negative society," Sonnabend's message provided extreme hostility.
Sonnabend's early AIDS research included the discovery of interferon in the immune system's of people with AIDS, the role of autoimmunity in AIDS, the immunosuppressive consequences of being rectally exposed to the sperm of many, many different partners; he was the first to raise the issue of confidentiality, issues specific to women and AIDS. He pioneered the use of prophylaxis medication, founded and edited the first AIDS research journal, filed the first AIDS discrimination lawsuit on behalf of his patients, and won this precedent-setting case. He also conceived and started community-based AIDS research. But in spite of all this, throughout the early years of the epidemic, he was barred from speaking at any AIDS forums. Callen went door to door pleading with organizers to allow Sonnabend to present his theory to the community, but the only invitation to speak came from people with AIDS themselves. As Callen, the author of Surviving AIDS observed, "In AIDS it seems that the only thing worse than being wrong is being consistently right and Joe's track record of being right and ahead of his time is unparalleled."
Sonnabend also had a message for his fellow physicians who treated sexually-active gay men, some of whom were affectionately known as "clap doctors." In August 1982 he wrote that in The New York Native. "It should be stated that gay men have been poorly served by their medical attendants during the past ten years (and I include myself in this criticism). For years, no clear and positive warnings about the dangers of promiscuity have emanated from those in whom gay men have entrusted their well being...and by not warning our patients of the hazards of such activity, we have to some extent contributed to the genesis of the AIDS syndrome."
To those for whom gay life had become synonymous with 'promiscuity.' Sonnabend was attacking the very core of the identity without realizing it. But to many others, he just simply didn't make sense. A whole superstructure of assumptions and conjecture about AIDS was being built upon the Centers for Disease Control's surveillance definition of AIDS which suggested that AIDS was something one could "catch." "It was a definition that was appropriate for counting the number of cases" argued Sonnabend, but not for defining the disease itself."
Added to the assumption that the disease was new was the further assumption that it was exactly the same disease in gay men. IV drug users, Haitians, and hemophiliacs. These two assumptions produced two more assumptions; that AIDS must be caused by the same thing, presumably a killer virus, and that it must be spreading from person to person and from group to group.
Bad science then offered "proof." The CDC claimed to find a "cluster" of cases of AIDS among nine gay men in Los Angeles who had sex with each other and died of AIDS. They concluded that these nine men must have contracted it from each other. This was their case for the killer virus theory.
But Sonnabend argued that there was another possible explanation. Perhaps these nine men were part of a smaller subgroup of homosexuals who lived a similar sexual lifestyle and accumulated exposures to common viruses in a similar fashion over a period of time. And because they were part of a smaller subgroup, the chances of encountering each other may not have been remote. Recognizing the dangerous myth of the "homogeneous homosexual" (the absurd notion that gay men are all the same and therefore, all equally at risk for AIDS), Sonnabend wrote to congressmen and other medical authorities urging them to be cautious in suggesting that "gay men" were carrying and spreading a killer virus. Because his patients were dying he asked them to look more closely at the particular lifestyle of a subset of sexually active gay men, particularly in large urban centers where an explosion of commercial sex establishments had been the setting for a growing number of epidemics of many sexually transmitted infections and viruses during the 1970's.
But his warnings fell on deaf ears. His argument would have been made stronger by a fact that was revealed years later. These nine men comprised a local branch of a national sex club--the Fistfuckers of America, L.A. They were the CDC's L.A. "contagion" cluster. Imagine Ted Koppel trying to explain that on Ni~htline.
The killer virus was initially presented only as a theory, but for a variety of complicated (and not so complicated reasons, it
soon came to be spoken about as if it were an inevitable fact. Well-meaning people who spoke for the gay community and people the community thought they could trust endorsed the idea of a killer virus completely.
The once widespread denial of AIDS in the gay community eventually gave way to a climate of panic and sexual McCarthyism fueled and heightened by the killer virus theory. "Does he have "it?" Do YOU have "it?" He looks like he must have "it!" The hedonistic carefree atmosphere of urban gay male life in the 70's was transformed into a germaphobic, grown-up version of you-got-the -cooties. Repeated but futile attempts to inform the gay community that there was an alternative view to the killer virus theory were blocked at almost every turn along with the good news: those who changed their sexual behavior in time might avoid developing fullblown AIDS.
Self-appointed guardians of the gay good, including gay conservatives, fundraisers and half-closeted men who were squeamish about any public discussion of gay male sexuality felt it was to dangerous, particularly with Reagan in the White House, to talk about the graphic details of urban gay male promiscuity. In GMHC's first newsletter, which was the first important, influential and widely distributed publication on AIDS, it was seriously reported that "gay men who were sexually celibate" had come down with AIDS and that this was proof that AIDS had nothing to do with "lifestyle." When truth becomes a burden, myths must be created-in this case the myth of the "sexually celibate" gay man with AIDS.
As Peter Seitzman, then president of the New York Physicians for Human Rights, a gay doctor's organization argued pathetically in the New York Native, "Aunt Tillie did no more to bring on her breast cancer thaq to be a woman." He argued that those who were trying to "blame" AIDS on a particular lifestyle were "shouting their guilt about being gay from the rooftops."
Case histories of AIDS patients published in all the leading medical journals consistently noted a history of sexually transmitted diseases, a high-frequency of bathhouse partners and recreational drug use, but the new killer virus was searched for and a "new" virus was found.
In April of 1984 Secretary of Health Heckler announced to the world that the race against AIDS was over; the contest had been won. The heroic hunt for "the killer virus" was victorious. She made it seem like macho American scientists had come to the rescue and with the promise of a vaccine they would soon save the day...just like a Mighty Mouse cartoon. And, the debate about the cause or causes of AIDS, which had only just begun, was officially over by edict.
But now, more than a decade later and billions of dollars spent on research into HIV, there are still no effective treatments, the survival rate has improved only for those with access to prophylaxis, and almost everyone, even Gallo, who shares the lucrative patent on HIV tests, is looking at other causative factors. Some feel that in AIDS research we are still at ground zero. Too many years have passed and too many people are dead. And, yet in the face of ever-increasing doubt that HIV=AIDS=DEATH some gay activists have taken to calling AIDS "HIV disease." How
could this be and why is it so?
AIDS and The Collision of Science and Politics
In his book, Man Adaptinq, author Rene Dubos writes, "whatever their differences of opinion, all the physicians of Greco-Roman culture have long accepted that diseases are caused by natural forces. But the history of this faith could bewritten as a debate that has lasted more than two thousand years between the proponents of the doctrine of specific etiology (e.g., caused by a single agent) and those who regard disease as the outcome of a constellation of factors acting simultaneously....There is no more spectacular phenomenon in the history of medicine than the rapidity with which the germ theory of disease became accepted."
According to Sonnabend, who was deeply influenced by Dubos, "The Greeks used to think in a multifactorial sense in that they thought healthy people were the ones who lived in harmony with their surroundings, and then when you got sick, it wasn't because you got visited by a germ or a virus, it was because you got too much heat, or were stressed out--things that were a part of you but just not in balance. But those who favor a specific etiology (single cause) say none of that matters. All that matters is that you get infected. Generally speaking, there are no viruses, probably even rabies, that make everyone who's infected sick. There are those people who don't get sick so there are probably other factors which may include your overall health."
In 1978, when Sonnabend worked with the New York City Department of Health's Bureau of VD Control, he found that the rates of syphilis and gonorrhea were staggering. "People were continually being reinfected with one thing or another and there was a great reluctance on the part of doctors to try and change people. They said it was judgmental." But later on when AIDS appeared and having witnessed this incredible volume of STD's, "saying that this was disconnected from AIDS just didn't seem reasonable to me. There had to be some connection. The question was just how." That's when he devised his multifactorial model for AIDS.
In an unpublished interview Callen gave last year, he offered this analysis of why some gay men attacked Sonnabend for suggesting a multifactorial model. "It's my theory that instead of dealing with the paid of the possibility that promiscuity led to AIDS, they decided to censor that as a possibility and clung to the government's explanation which let them off the hook. And so faced with the option of considering the multifactorial theory for the horror that was going on or believing the alternative government explanation that it was just one unlucky sexual encounter--had nothing to do with lifestyle--it could have happened to housewives in Des Moines--it just happened to be gay men--that was emotionally much more palatable, and I would argue that the fervor with which they embraced the killer virus theory and the viciousness with which they censored any consideration of alternative views had to do with personal terror.
Michael Agreed with Dr. Sonnabend that "People had their own psychological reasons for preferring one view over another. One
absolved them of any responsibility for what was happening. Then, they convinced themselves that this view--it's just bad luck--is right. Once you are able to convince yourself, for flimsy psychological reasons, that the horror unfolding before your eyes, the suffering and the deaths and the agony is just bad luck, then you can blow yourself up like a poison dog and say, 'How dare you imply that my friend who is suffering and dying is in any way responsible." And then we come along with our writing ("We Know Who We Are: Two Gay Men Declare War on Promiscuity." by Michael Callen and Richard Berkowitz. New York Native. Nov. 8-21, 1982), and suggest that unwittingly we did bring it on ourselves. It was a real strange turning of the tables. We sounded like right-wingers!
"If you believe, as many people still do, that AIDS is merely the result of bad luck, then they say why are you talking about promiscuity, bathhouses, and drug abuse? You must really be guiltridden or have deep-seated sex-negativity. So people had their own personal psychological reasons for preferring a single virus theory, which were not entirely rational, and then as often happens, once you find a position that makes you less crazy, then you start rehearsing it over and over until you have convinced yourself. Then anybody who comes along and says wait a minute, we don't believe it's that simple, we think it's something else, it makes you crazy because they are picking at your denial. They are picking at your defenses.
"And also one must conjure up the political contest," Callen continued. "Bush and Reagan stole the word "lifestyle" from us. They said this is a lifestyle disease and what they meant was 'you guys are immoral and you brought this on yourselves.' What other word were we going to use? That's what we believed; AIDS in sexually active gay men was a lifestyle disease. We were preempted. Our language, our ability to calmly and rationally discuss our theory was taken away from us because the right wing was using the same language.
"In the early days of the epidemic, I had this recurring nightmare. I'm standing at the top of a cliff and Jerry Falwell, Pat Robertson, and Jesse Helms are down at the bottom and they are screaming at me 'DON'T JUMP!' An I have to make the decision: I hate them. I don't ever want to agree with them, so what should I do? Jump? Kill myself? Or should I not jump and appear to agree with them? And I think that was the dilemma we faced as multifactorialists, and we concluded, unlike others, that the bottom line was what was in the best interest of gay men. That was to save their lives and to make them be able to not get sick. In order for them to not get sick, they had to know what was making people sick. But unfortunately we were allayed against some formidable forces and also, we must never lose sight of the fact that people genuinely believed in a killer virus."
Sonnabend explains, "When something new comes along scientists will make thearies to try to figure out what is going on, trying to explain the mystery. But one can account for things that are new by recombining old influences in new ways. It's more complicated than just a germ; it means one must do a little thinking. When you present a theory, whether or not you're going to be successful depends on the marketing aspect. It's not the quality of your ideas
that matter--it's the quality of your salesmanship. There's a big incentive to sell your theory because if you can get it accepted as fact, then you have research funds, the Nobel prize, money and all these things. I just wasn't much of a salesman, and to tell you the truth, I wouldn't want to be."
"When you're selling something," says Sonnabend, "you have to consider your public. The notion that there was a killer virus was appealing to many different constituencies. People who rail about "family values," people who hate prostitutes and gay men, people who would love to think that extramarital sex can kill you, loved the killer virus theory. Gay men liked it too because it deflected attention away from the bathhouse scene (before AIDS and safe sex).
"Another factor in marketing this theory was the pathetic condition of science writing in this country [United States]. Although there are some excellent science writers, people who write for the mainstream media are generally so limp that instead of going out and doing scientific investigative reporting, they passively sit and only call the establishment places who probably also send them the copy. Institutions which employ the best public relations department are the ones who get heard and therefore succeed. The killer virus was well marketed by professional people. The power structure in terms of allocation of research funds came into the heads of those who sold the theory, meaning killer virus--no co-factors; everybody who is HIV positive is going to die, and so the only way to go if you believe that, is to kill the virus. All research turned into retrovirus research and all treatments turned into retroviral treatments. The response to AIDS has been a tragedy. We've lost a tremendous amount of time, and I'm afraid we won't improve much until we understand how we got to where we are today."
Did Callen, who died in December, 1993, feel he had lived long enough to see a broadening of the scientific effort? "I see no evidence that the tide is turning and what I predicted in 1986 seems to be coming true. HIV as the sole and sufficient cause of AIDS is such a bankrupt concept, intellectually, logically, rationally, and most importantly, bankrupt in terms of producing any appreciable benefits to people with AIDS, that what will happen--and what i$ already happening, is that people will re-write history. The euphemism last year was "a return to questions of basic science." What's "basic science?" HIV causes AIDS--what else do you need to know--that's been basic science for the last ten years. For a long time HIV people have said that the natural history of AIDS is known, and we knew it was a disease of T-cells. So I see the climate shifting to the extent that even the most rabid "HIVISTS"--that's what I like to call them, buzzing around like busy bees--knows that it's bankrupt, but they are trying to find a way not to have to admit it. So you are starting to hear talk about "co-factors," different strains of the virus and macrophages, and they are acting like this is not a retreat from their original position. What I'm hearing a lot lately from once rabid HIVISTS is "I never denied the importance of co-factors' and to which I respond, "You most certainly did deny them and more importantly you never supported research into the role of cofactors' which is the bottom line."
According to Sonnabend, "The most important thing I would say we need to do is to admit that we are in a mess. We've spent 13 years and we've got nothing. The thing to do then is to force an acceptance of this. Then I believe we could find some of the answers, including the early monopolization of AIDS research by largely mediocre scientists, and so many other factors. There are great immunologists in this country [United States] some of whom have only recently begun to work on AIDS. Why were they not involved from the beginning?
In 1992, I received a call from Callen to tell me that there was a new "queer" magazine (the now defunct OW) whose editors reacted positively when he explained the multifactorial theory to them. They were amazed that they had never heard about it before, because it made sense to them. After years of giving up trying to get the multifactorial theory heard in the gay press and battling my own community, I had come to feel like a man with a country. One day while standing in the QW office I tried to comprehend why gay people were suddenly eager to promote a discussion of the multifactorial theory of AIDS. Then it struck me, almost all the editors and staff were under 30 years of age. They had all come out when AIDS was already a fact of life and safe sex was just a natural, healthy part of gay life. For the first time in a decade, I saw the possibility of hope for a gay future without AIDS. Maybe my generation couldn't publicly face up to our mistakes, but the post-AIDS generation can--and should. Or AIDS in gay men won't ever go away.
"The rectum is a sexual organ. It deserves the same respect that a penis and a vagina get." says Sonnabend. But if you are engaging in receptive anal intercourse outside a mutually monogamous relationship, don't get sperm inside your rectum. That's why safe sex was invented. That's how safe sex works.
It's been said that if you can control the most intimate expression of peoples' needs, then you've got control of the people. I learned that lesson coming to terms with my homosexuality in the 70's. Looking back, it would have been so easy for me to have avoided taking any risks for AIDS if I knew then the painful truths that Joe Sonnabend finally made me hear. Facing those truths in 1982 could have saved my life; it certainly set me free. Edmund White was partially right; we need to fight a war against a sex negative America. That's one more reason to challenge AIDS dogma. In the meantime, "for our own good," the dynamics of AIDS are being used to control and repress the sexuality of gay people and straight people alike. As Michael Callen was fond of saying. "Let the truth-telling begin."
SONNABEND ON HIS MODEL 11 YEARS AFTER IT WAS PUBLISHED IN JAMA:
"There's a lot I would change, but the general principle of it I don't think I would change. I have proposed that HIV infection is not necessarily or even frequently followed by seroconversion (becoming antibody positive) and that given the biology of retroviruses, infection, particularly with a small amount of virus,
more frequently become latent or silent and this infection is not detected by the HIV antibody test. This means that people may live in harmony with latent HIV infection. The issue is to understand what disturbs latency and causes HIV to replicate and result in seroconversion. This could happen anytime after infection, or never. The disturbance of latency probably depends on factors acting on at least two levels. Firstly, there have to be signals that can activate HIV out of latency; and secondly, there probably has to be some defect in cellular immunity that prevents the killing of virus-infected cells. The factors such as CMV, EpsteinBarr virus, exposure to blood and semen, particularly rectally, with possible contributions from the hepatitides, syphilis, and other infections, as proposed by Sonnabend in 1983, could act on both levels. Firstly, some are known to produce signals that activate HIV in the form of cetaceans, such as TNF (tumor necrosis factor). For example, CMF infection can induce TNF which is known to activate HIV. Secondly, some of these factors can impair cellular immunity and thus prevent the killing of cells in which HIV has been activated. For example, CMV and EBV infections are known to inhibit cellular immunity.
In the absence of these factors, it may be possible to live with HIV in good health and it is entirely possible that some people exposed to HIV, but who are not in risk groups, such as some health care workers, are indeed latently infected with HIV; they are negative on the HIV antibody test and will remain in good health. This latency model could be tested.
On the other hand, it still remains possible that HIV contributes nothing at all (to the development of AIDS) because there are cases that resemble AIDS in every aspect--except for the absence of HIV. There may be very few of these cases, but the principle has been established.