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The Faculty of Medicine
of the University of Toronto
&
The AIDS Committee of Toronto
The Sixth Annual Conference:
Practical Approaches for Health Care
Toronto, December, 1996


Relapse

By Walt Odets

Over the past year or two, many have been talking about "relapse" among gay men and bemoaning the failure of AIDS primary prevention.  Incidence of new infections is certainly increasing in all segments of US gay communities, especially among the young and those of color.  In the first nine months of 1993 the annualized incidence of new HIV infections in San Francisco was about three times that necessary to sustain a 50 percent prevalence of HIV infection in San Francisco's gay community - indefinitely.  Such figures leave no doubt that there has been some sort of failure, but an historical and psychological examination of AIDS education in gay communities suggests that it is not the failure of primary prevention at issue, but our failure - among others - to accurately conceptualize the nature of primary prevention since 1985 and  - with rare exceptions - deliver it to gay men at all .  The differences between the education we have been doing since 1985 and true primary prevention are substantive, not semantic or merely theoretical: our ill-defined work today is not only failing to provide gay men with a foundation for long-term prevention, it is, in my opinion, responsible for much psychological damage, and often inadvertently supports the transmission of HIV.

In the fields of medicine and public health, the terms primary prevention and secondary prevention have distinct, long-standing meanings.  In the instance of HIV and the gay communities, traditional use of the terms would define primary prevention as the effort to prevent currently uninfected men from contracting HIV; and secondary prevention as the effort to prevent men infected with HIV from progressing to clinical disease.  These clear concepts have traditionally drawn useful distinctionsthe uninfected and the infected (but asymptomatic) have been perceived as having different medical needs, psychosocial issues, and prognoses, and thus as requiring different prevention interventions to accomplish different objectives.  As one example, uninfected men are much more likely to survive the epidemic than infected men, but this requires that they stay uninfected .  This single fact alone contributes to substantial differences in the psychological and social issues that must be addressed among these two groups. 

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I need to make one final clarification before I move onto the substance of what I want to say about prevention.  In discussing any form of prevention, the idea of  "outcome population" must be clearly distinguished from "target population."  Primary prevention for the gay communities has, by definition and by reason, the purpose of keeping uninfected men uninfected.  Uninfected men are the only outcome population for primary prevention.  While infected men are a possible target population for primary prevention, they will appropriately only be a target population to the extent that addressing them changes the outcome for un infected men.  Primary prevention is not for infected men any more than secondary prevention is for uninfected men.

Since the beginning of the epidemic we have done "AIDS education for gay men," a generic description that has never contributed to clarity about what kind of education was being done, and for whom.  In the years prior to 1985 there was only one possible kind of  prevention to be done - primary.  Until 1984 we did not have a presumption about the organism responsible for what came to be called AIDS, and any question of who had "it" - and who did not - was moot.  Thus we educated gay men on the presumption of communicability, and all gay men were either presumed to be carriers, or known to be (because they were clinically ill).  The first group - all gay men who were not clinically ill - were the only definable outcome population for primary prevention.  This situation - our limitations of knowledge - required that we deliver a paradoxical prevention message: for purposes of protecting himself, a man had to behave as if he were uninfected and everyone else was infected.  For purposes of protecting others, he had to behave as if the converse were true: he was infected and everyone else was uninfected.  This was the only possible approach; it accurately accounted for the facts as we knew or conjectured them at that time; and it provided important information about how HIV could be transmitted.

In April of 1985 the ELISA became available.  It was to become a laboratory marker with unprecedented psychological, interpersonal and social significance for gay men.  The ELISA provided the basis for - depending on the point of view - distinctions or divisions within the gay community; and it should have changed the fundamental nature of AIDS prevention for gay men.  With knowable - if not always known - uninfected and infected populations, the ELISA allowed us to distinguish the outcome populations of distinct primary and secondary prevention.  Instead, we continued to do what we had done before - deliver prevention "to gay men" - prevention that rarely, if ever distinguished between those who were infected and those who were not.  This prevention - what I would like to call undifferentiated prevention - would increasingly separate itself from anything resembling authentic primary prevention, and it has, I believe, contributed to a resurgence in HIV transmission among gay men.

Before I discuss how undifferentiated prevention has failed to do its job, I would like to describe it in more detail - for it is now so familiar that it is often hard to see it for what it is.   Following the ELISA, a distinct population for secondary prevention was being clearly defined as more and more men tested HIV-positive, and medical advances increasingly offered treatments for infected, asymptomatic men.  Secondary prevention began, and has continued to, vigorously and directly address the needs of infected men for medical interventions, as well as services to address many of the distinct psychosocial issues experienced by those living with HIV in their bodies. 

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In contrast, the changes brought about in what should have been primary AIDS prevention following the release of the ELISA are an anomaly in the entire history of public health.  In peculiar contrast to what was happening in secondary prevention, the newly defined outcome population for primary prevention seemed to remain virtually unrecognized and unaddressed.  Primary prevention did not distinguish - much less focus on - uninfected gay men as distinct from "gay men" in general, and in failing to do so, prevention was failing to recognize what gay men themselves were increasingly perceiving, if unclearly at first.  As more men found out their antibody statuses, many were discovering that they experienced important differences between being infected and being uninfected.   Many social, interpersonal, and psychological issues were significantly different; and, most centrally for primary prevention,  men were realizing that the consequences of unprotected sex - which is also to say the benefits of protected sex and the motivations to practice it or not practice it - were very different for the two groups.    Education seemed to often implicitly - and often explicitly - deny these differences, because there was little, if any, education being specifically targeted at even the most distinctive issues and needs of uninfected men.   In apparent ignorance of the burgeoning social, psychological, and interpersonal realities wrought by the ELISA, prevention remained busy at work, as in pre-ELISA days, establishing "community norms" of behavior for "gay men."   "A Condom Every Time" became a familiar litany that explicitly ignored the obvious fact that infected and uninfected men might - or might not - use condoms for very different reasons.  This was the birth of "undifferentiated" prevention.  To this day, most of our AIDS prevention education remains undifferentiated because it persists in the idea that there are no differences in the needs, issues, and appropriate behavioral norms for infected and uninfected men. 

The divergence of the issues between infected and uninfected men has increased over the years because it has been supported by many biomedical developments since 1985.  These included the discovery that fully half of urban gay communities were infected, which provided both infected and uninfected men with substantial, distinct psychological and social identities.  We also discovered that a majority of infected men would progress to clinical disease within ten years - in 1985 we still asserted that "perhaps 20 percent" would actually become ill - and we began to feel or to find that antivirals were less than we had hoped for.  The ideas of "living with AIDS" or "thriving with AIDS" would become important and useful concepts for infected men in the years following 1985.  But they have increased the distance between infected and uninfected men because, for many uninfected men, they are ideas that have increasingly had the ring of denial.

The result of these divergences between infected and uninfected men has had one central consequence for primary prevention: unable to acknowledge the differences because of the undifferentiated nature of education, prevention more and more included HIV-negative men only by implication.  They could not be singled out as the - and the only - outcome population for primary prevention because they could not be distinguished from infected men and named.  In recently examining nearly 400 pieces of AIDS prevention literature dating back to 1986, I found only two uses of the terms HIV-negative or uninfected.   The term "HIV-positive," however, appeared several hundred times.

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The following primary prevention piece, Asians & AIDS: What's the Connection? is typical of our work since 1985.

    We must face the fact that Asians are at risk, and we must do something about it. . . . We can find out the facts - how AIDS is transmitted and how it is not.  We then have a choice - do nothing about it or use this information by translating it into safer sex behavior.  The AIDS virus is often transmitted through having unsafe sex or sharing needles with an infected person. . . . Playing safer means knowing how to protect ourselves and our partners. . . . AIDS is not only a threat to you and your partners, but also to your friends.

The ambiguity about the population being addressed in this very typical undifferentiated educational piece is first suggested by use of the term "at risk."  At risk is intended to imply a primary prevention intent here.  But at risk is commonly used for secondary prevention, as in the idea that an infected man is at risk for opportunistic infections.  A clear and unambiguous primary prevention intent would have been conveyed by simply saying, "at risk for HIV infection."  The confusion, however, continues, because the reader is next told that HIV is "transmitted " by the reader having unsafe sex with an infected partner while, of course, the uninfected reader does not transmit HIV, but contracts it.  Finally, having just been warned about transmitting - meaning contracting - HIV through sex with an infected partner, the presumably uninfected reader is told that he should protect his partners, because he is a threat to partners and friends.  Such blurring of lines between uninfected and infected men is all the more serious in this typical piece because nowhere in the material is the term "uninfected" or "HIV-negative" used, and nowhere is it simply stated that the purpose of the brochure is to help uninfected men remain uninfected .  In fact, the brochure displays a statement under the copyright notice reading, "The target audience of this brochure is the Gay/Bisexual community."    Such confusions are virtually universal in our primary prevention today.

Let me provide one more example of this problem.  San Francisco's STOP AIDS Project, perhaps the single most widely copied primary prevention program in the world - and one that pioneered some important approaches early in the epidemic - publishes a brochure that invites gay men to its peer-facilitated prevention meetings.

In the brochure we learn that STOP AIDS offers groups "with other gay and bisexual men like yourself who want to explore what good sex - safe and satisfying sex - is all about."  The brochure tells us that "everyone's experience is different," but that "it turns out we all have a great deal to learn from each other about dealing with fear and frustration."   We are told that in the groups we can "talk about how AIDS has changed more than our sex lives" including our "personal sense of the future."  And, finally, we are introduced to STOP AIDS' special groups:  "Guys under 26," "Gay Couples," "Safe & Sizzling Workshops," and "Guys Over 50."

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Such language simply begs the central issues of primary prevention, the very issues it should be - and is funded to be - direct about.  For example, are the others in the group really "like yourself" or does HIV infection create some differences among us?  Are we really there to learn "what good sex is all about" rather than to talk about staying uninfected?  How is everybody's experience different, and could this have something to do with HIV status?  Might HIV status - one way or the other -  be a component of our "fear and frustrations?"  Has AIDS changed "our lives" in the same ways regardless of HIV status?   Might HIV status be related to "our personal sense of the future?"  And of all the groups for special populations, is HIV status - in the context of primary prevention - really not one of the differences that might be addressed?   The term "HIV-negative" is used only once in this piece, which is to make the offer that by attending a STOP AIDS meeting you can "even find out where to follow up or get help . . . to talk about what it means to be positive or negative."  Is it possible that the offerings of a purely primary prevention agency will not include this discussion - perhaps not even permit it - and that clients must be referred elsewhere to talk about being HIV-negative?  And yet - aside from the considerable refinement of the equivocation - this piece is also typical of our primary prevention today.

How undifferentiated prevention came to be, and why we sustain it is a complex and painful matter, and I will only touch on it now.  In 1986, the widely touted "public health victory" in gay communities was at its peak.  Uninfected men knew the information needed to remain uninfected.  Any explicit assertions of the needs of uninfected men - including the assertion, in occasional whispers, that it was in fact not always easy to remain uninfected and men needed to talk about that - were experienced as an affront to men with HIV or AIDS, because they, after all, had undeniably pressing needs.  The ELISA had clarified that it was not a minority in our communities that was infected, but, in urban communities, a near majority.  As struggling minority communities we were determined not to let any of our members suffer disenfranchisement because they were infected with HIV - not from larger society, and certainly not from our own communities.  But as more and more men were found to be infected, some very troubling questions crept into our hearts and into our politics.  If we continued to explicitly assert - as we had done early in the epidemic - that it was better to be uninfected, were we not implying that there was something "wrong" with being infected, and perhaps aggravating already powerful, if unutterable, feelings that infected men were somehow culpable for their infection?  If a large segment of the community spoke openly about plans to survive the epidemic, were we not abandoning those who could not survive?  Could the fortunate members of the community explicitly hope for something that was impossible for the unfortunate?  If we insisted upon the central tenet of primary prevention were we not implying that the futures of men already infected were hopeless?  Could we really assert that it was better to be living without AIDS than with it?  And, after all, if men were really living with AIDS, doing well with AIDS, thriving with AIDS, and were long term survivors, what was so important about not having HIV?

As understandable as such feelings are, one consequence of them has been a primary prevention effort that is almost universally not only confused and confusing, but destructive.  Most of our prevention work fails to meet the criteria of true primary prevention by failing to accurately define and address an outcome population or purposes appropriate to that population.  Our education speaks of "staying healthy" without being able to say if it means " uninfected" or "asymptomatic," and it offers uninfected men little more than the opportunity of "talking about how AIDS has changed our lives."  The realities of uninfected gay lives are unaddressed or denied.  The global slogans of undifferentiated prevention like "a condom every time " instruct uninfected men - for example, two negative men in a primary relationship - to test, find that they are negative, and go home and act - and often feel - as if they were positive for the rest of their lives.   Undifferentiated education is unable to acknowledge the obvious: "safer sex" is not "a condom every time," but sex that does not transmit HIV .  And that real definition of safer sex has everything to do, not only with what men do, but with whom.

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Although I can only broadly outline each, I would like to be specific about three areas in which undifferentiated prevention fails.  The first is that, in ignoring or denying most realistic distinctions between uninfected and infected men, undifferentiated prevention badly exacerbates the unnecessary, unrealistic, and destructive identifications of uninfected men with HIV and AIDS.  Such identifications - rooted in unconscious homophobia that dictates that if you are gay, AIDS is what you get for it - has given us a new generation of young gay men for whom contracting HIV is much too plausible, and an older generation for which contracting HIV now simply often feels inevitable.  Our prevention must not only stop exacerbating such feelings, it must explicitly counter them.

The second area in which undifferentiated prevention fails is in its inability to address the specific psychosocial issues of uninfected men.  This limitation is seen most obviously in the inability of prevention that is directed to an undifferentiated population of gay men to simply say stay uninfected .  Beyond that fundamental issue, undifferentiated prevention cannot talk about why men are not using condoms, about feelings about hope and the future, about fear - not of death - but of survival, and the myriad other social, interpersonal, and intrapsychic issues that uniquely affect uninfected men and which contribute to new infections.  Prevention must not only explicitly address such issues, it must begin to openly discuss benefits for remaining uninfected.

 Finally, and very briefly, undifferentiated prevention is fundamentally at odds with social marketing approaches.  In communities that are most centrally focused on those with HIV and AIDS, prevention that cannot name uninfected men is experienced by them as not being about or for them.  Undifferentiated prevention thus disenfranchises uninfected men.  In contrast, social marketing relies on positive identifications between men and their communities, for it is these identifications on which behavioral changes are "coat-tailed."  Our prevention cannot hope to destroy social identifications and simultaneously exploit them for behavioral change.

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Before I finish, let me very briefly outline how true primary prevention for gay men might look.  True primary prevention will be easily recognizable because, firstly, it will name and speak explicitly about, and to, its outcome population of uninfected men.  Secondly, it will explicitly state its purpose of keeping  uninfected men uninfected.  And thirdly, it will explicitly discuss the psychosocial issues of uninfected men and state benefits for uninfected men who remain uninfected.  The result of such obviously necessary guidelines will be that implorations like "We can talk about safe and satisfying sex" will become "You don't have to become infected simply to be gay and sexual "; "We can talk about our futures" will become "Staying uninfected is about your future and your community"; and "We have a great deal to learn from each other about fear and frustration" will become "If you are HIV-positive, you can make a big difference in the life of an uninfected man. "  The most obvious benefit of such simple changes is that prevention will be more effective because the outcome population will know it is being spoken to and about what ; and because uninfected men will be allowed to perceive benefits for remaining uninfected.

What about the experience of infected men?  They sometimes feel that the real meaning of primary prevention is that their lives are not only different from those of uninfected men, but hopeless.  While such feelings are psychologically understandable, I do not believe this is an accurate perception.  But infected men perceive much that is potentially true about their situation.  Although un infected men within large urban gay communities are now the disenfranchised, that is a tenuous balance that could easily shift to the detriment of infected men.  It is true that a tacit national policy decision focusing on prevention of infection as the important hope for the epidemic seems to have been adopted following the Berlin Conference.  And it is true that some community support for HIV-positive men is sustained more by guilt - which is tenuous and volatile - than by simple, humane concern, and many infected men intuitively perceive that.  Thus, infected men have many realistic and important concerns about their position in gay communities; and these concerns must be addressed and clarified if infected men are to be respected and cared for, even as real primary prevention is initiated.  

Unless the uninfected man's hope to survive per se is experienced as betrayal, primary prevention is not an abandonment or betrayal of those with HIV.  Explicit primary prevention can acknowledge the different paths of infected and uninfected men without implying that one is culpable.  Explicit primary prevention can respect the humane desire for unity within and among the gay communities without denying differences where they really exist.  Explicit primary prevention can be done without threatening the indispensable secondary prevention that we have become so skilled with.  If the feelings that mislead us on these facts cannot be examined and clarified, we will not be able to make a decision to do primary prevention, or not do it because it is too humanly destructive and painful for those who are infected.   Today, the epidemic in gay communities is already the product of a decision, if an unconscious one: we do not do primary prevention.  We must examine this decision.

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