PART 1

AIDS & Public Policy Journal
 WINTER 1995
Volume 10, Number 1

By Walt Odets

Over the past year or two, many have been bemoaning the failure of AIDS primary prevention for gay men.  Incidence of new infections is increasing in all segments of the gay communities, and especially among the young and those of color.  It now seems apparent that communities of young, gay men will experience levels of infection comparable to those already experienced by older men.  While AIDS education has certainly not failed completely, such figures leave no doubt that there have been failures of some sort.  An historical and psychological examination of AIDS education in gay communities, however, suggests that these are very often not failures of primary prevention, but failures to accurately conceptualize the nature of primary prevention and deliver it to gay men at all.  We have certainly directed a great deal of "education" to gay men during this time, if not always equitably distributed among the diverse groups within gay communities.  But it has only rarely qualified as authentic primary prevention in the nine years since 1985.  The differences between the education we have done and true primary prevention are substantive, not semantic or merely theoretical.  Much of our work to date has not only failed to provide gay men with a foundation for long-term prevention, it has been responsible for much psychological damage, and has often inadvertently supported the transmission of HIV.

In the fields of medicine and public health, the terms primary prevention, secondary prevention, and tertiary 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; secondary prevention as the effort to prevent men infected with HIV from progressing to clinical disease; and tertiary prevention as the effort to minimize the impact of clinical HIV disease, extending the quality and perhaps the quantity of life.  These clear concepts have traditionally drawn useful distinctions.  The uninfected, the infected but asymptomatic, and the clinically ill have been perceived as having different medical needs, psychosocial issues, and prognoses, and thus as requiring different prevention objectives.  For example, uninfected gay men need education in the behavioral change necessary to avoid HIV infection, but not in "early intervention" treatment; and education for uninfected gay men might be delivered in several popular gay venues, but not through HIV treatment clinics.  Furthermore, uninfected men are much more likely to survive the epidemic than infected men, and this fact alone contributes to substantial differences in the psychosocial issues that must be addressed.  Such distinctions allow each form of "prevention" to accomplish its distinct purpose: to prevent infection, to prevent clinical disease, or to prevent loss of quality of life, or life itself.

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 both definition and reason, the purpose of keeping uninfected men uninfected.  Uninfected men are the only outcome population for primary prevention.  Which target populations primary prevention might address in pursuit of this purpose - for example, HIV-infected men, who necessarily participate in the infection of uninfected men, although they are not part of the outcome population - is an entirely independent issue.  Decisions about including or not including target populations (about which I will say more in a following section, Are Infected Men an Important Target Population for Primary Prevention? ) are made by evaluating the potential of their inclusion for changing the outcome for the outcome population.

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.  In fact, psychological, medical, social, and political issues have always dictated what kind of prevention could be done, and we have intuitively worked within those restrictions from the beginning.  In the years prior to 1985 there were only two possible kinds of  prevention, primary and tertiary.  Until 1984 we did not have a presumption about the organism responsible for the clinical syndrome that came to be called AIDS, and any question of who had "it" and who did not was moot.  Thus initially out of intuition and later from epidemiological reconstructions, 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 -  gay men who were not clinically ill - were the only definable outcome population for primary prevention, although many unknowingly carried HIV.  Those who were clinically ill constituted the outcome population for tertiary prevention.  This was a prevention  approach that accurately accounted for the facts as we knew or conjectured them.  Nonsymptomatic gay men, frightened by what they saw befalling others in the community, were a profoundly motivated population for primary prevention.  Although there is little evidence that education itself provided the motivations for behavioral change, it certainly provided crucial information about probable modes of transmission and thus played an important role in helping gay men change their sexual behaviors on a scale unprecedented in public health.

In April of 1985 the ELISA became available and was shortly in clinical use for the detection of  HIV antibodies.  But the ELISA was to become much more than a way to screen the blood supply and determine the "antibody status" of an individual.  Today the fact of HIV antibody status stands as a laboratory marker with unprecedented psychological,  interpersonal, and social significance.  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 knownuninfected and infected populations, the ELISA provided the means for distinguishing the outcome populations of distinct primary and secondary prevention efforts that could each address the issues and needs of its outcome population.  Instead, what had once been true primary prevention was slowly transformed into an undifferentiated education that would increasingly separate itself from anything resembling primary prevention.

What is "Undifferentiated" Education ?

The changes brought about in primary AIDS prevention following the release of the ELISA are an anomaly in the entire history of public health.  Many within gay communities had been unsupportive of large-scale use of the ELISA to determine antibody status because of the potential for social and political abuse.  In 1987, however, Project Inform and the San Francisco AIDS Foundation became the first important agencies within gay communities to endorse and encourage HIV testing.  The stated reasons were variable, but prominently included the idea of early intervention medical treatment for those who were positive.  Additionally, testing came to be more and more promoted as a prevention tool, although the exact mechanism was not often stated explicitly.  It was sometimes implied that men who knew themselves to be positive would behave more "responsibly," an idea that would quickly establish a role for HIV-positive men as a target population for primary prevention.  The intended impact of HIV-testing on the behavior of men who tested negative was even less clearly stated, although they would presumably have new or additional incentive to protect themselves.  Today we have numerous studies suggesting that little change in sexual behavior occurs as a result of HIV testing in either group.

In response to the ELISA, AIDS secondary prevention almost immediately began to define itself and change appropriately.  A distinct population for secondary prevention was being clearly defined as more and more men tested HIV-positive, and advances in medicine increasingly offered treatment for infected, asymptomatic men.  Secondary prevention began, and has continued, to vigorously address the needs of this population with information on prophylaxis, relevant psychosocial issues, and available social services. 

In peculiar contrast, the newly defined outcome population for primary prevention seemed to remain almost unrecognized and unacknowledged.  Primary prevention that had - before the ELISA - been true, focused primary prevention, increasingly became undifferentiated and scatter-gun because it was failing to recognize what gay men themselves were increasingly perceiving, if often unclearly at first.  As more gay men found out their antibody status, many realized that there were important differences between infected and uninfected men.  Many social and psychological issues were significantly different; and certainly the consequences of unprotected sex were very different for the two groups.  As a result, infected and uninfected men were very differently motivated to practice or not practice "safer sex."  Education was not only failing to acknowledge these differences, it seemed to often explicitly or implicitly deny them.  There was little or no 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 was busy at work, as in pre-ELISA days, establishing "community norms" of behavior for "the gay community."  This was the birth of "undifferentiated" prevention. 

To this day our AIDS education remains undifferentiated because it fails to recognize that there are differences in the needs, issues, and appropriate behavioral norms for infected and uninfected men.  One indicator of these differences is that gay men now routinely advertise in "personals" for men of like-antibody status.  Many uninfected men do not want to risk their own infection or the potential trauma and loss of a relationship with an infected men; and many infected men do not want to risk infecting a negative man, or deal with a relationship with someone who cannot understand his values or form of life.  This divergence of infected and uninfected men 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 psychosocial identities.  We also discovered that most infected men would progress to clinical disease within ten years -  1985 we still asserted that "perhaps 20 percent" would actually become ill - and we were finding 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 of the latter, they 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 included  HIV-negative men only by implication.  They were never singled out as the only outcome population for primary prevention.  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.  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 outcome population in this very typical undifferentiated educational piece is first suggested by use of the term "at risk."   At risk is probably intended to imply a primary prevention intent here, particularly because "doing something about [AIDS and Asians]" is first defined as finding out "how AIDS is transmitted."  But at risk is commonly used for secondary prevention, as in the idea that an infected man is at risk for opportunistic infections.  The confusion is heightened by the idea of "transmitting AIDS" (as opposed to HIV), because only previously infected people are at risk for AIDS .  A clear and unambiguous primary prevention intent would have been conveyed simply by saying, "at risk for HIV infection."  The confusion continues, for the reader is warned that HIV is transmitted , rather than contracted, "through having unsafe sex or sharing needles with an infected person."  Next, the (presumably uninfected) reader, who has been told that HIV is transmitted  meaning contracted  by having sex or sharing needles with "an infected person," learns that he should "protect [his] partner" and that AIDS is a threat to "your partners . . . [and] your friends."   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. 

The STOP AIDS Project of San Francisco, perhaps the single most widely copied primary prevention program in the world - and one that pioneered some important prevention approaches early in the epidemic - publishes a brochure that invites gay men to small, peer-facilitated prevention meetings:

[STOP AIDS offers] a one-shot evening with other gay and bisexual men like yourself who want to explore what good sex   safe and satisfying sex  is all about.  A lecture?  No way!  Everybody talks.  Everybody listens.  After all, everyone's experience is different.  It turns out we all have a great deal to learn from each other about dealing with fear and frustration.  And a great deal to teach one another about what getting close really means. . . . You'll hear the latest facts about the risks of different sexual practices and how you can stay safe.  You'll have a chance to talk about how AIDS has changed more than our sex lives  it shapes our friendships, our community, our personal sense of the future. . . . Best of all, the evening is a time for all of us to renew our commitment to protect ourselves and care for others in the ways that mean the most.

How Undifferentiated Education Began and Why We Sustain It

In retrospect, no single fact of the epidemic is so clearly responsible for our undifferentiated approach to primary prevention as the extraordinary prevalence of HIV in gay communities.  The big and tragic surprise of the ELISA was that fully half  the gay communities of  San Francisco, New York, and Los Angeles seemed to be infected with HIV.  This single fact - in combination with the psychological predispositions of  loathed, sexually characterized, minority communities - set in motion what was to become a juggernaut of community identification with AIDS that has proved far stronger than an identification with "normal" lives unplagued by HIV and early death.  The psychosocial issues implicit in such figures were to prove new and especially problematic, and they would interact destructively with prevention efforts in ways that have been particularly difficult to analyze and clarify.  Public health would also find itself completely inexperienced in promoting prevention in communities with 50 percent prevalences of infection.

The gay communities were still profoundly disenfranchised in the late seventies and early eighties, even as they struggled with partial success for new, coherent social and political identities.  They were to prove horribly vulnerable psychological targets for the epidemic.  The terms "gay cancer" and Gay-Related Immune Deficiency (GRID), the earliest descriptors for what was to become AIDS , were prescient indicators of how profoundly the gay identity would become entangled in the epidemic, both  in the public mind and in the minds of gay men themselves.  In 1982 and 1983, the epidemic - although apparently not yet of proportions warranting such a description - was widely experienced by gay men, not only as a threat to newfound sexual freedoms, but to the broad social and political gains of the community as a whole.  Thus, the "problem" was an important issue for the whole gay community.  The relatively small number of us who were actually infected needed to be protected from any mainstream efforts to restrengthen disenfranchisement of gay men either because they were infected or because - the real issue at hand - they were simply gay, and GRID provided new rationalizations for why gay men should be disenfranchised.  As a struggling political community we were determined not to permit any of our constituents to suffer this fate, and we certainly would not allow any disenfranchisement of infected men within our own community.  Men were infected because they had exercised the sexual freedoms we held as important expressions of civil and human rights, the same rights all of us valued, exercised - or felt we ought to have exercised - and wished to continue exercising.  Thus, from the beginning there were important, compelling reasons for the gay communities to form support around and identify with those who were, or might be, infected.

The reality in 1983 and 1984 was that we did not know who was infected.  The expectation, however, was that the prevalence of HIV infection among gay men was relatively modest, at least in comparison to what the ELISA would soon suggest.  One common and astonishingly painful forecast in 1984 was that perhaps as many as ten percent of gay men carried HIV.   Until we knew more precisely who did and who did not, primary prevention would quite correctly promote the idea that all gay men were to be temporarily presumed infected in order to eradicate HIV .  As 1985 and 1986 quickly revealed, the gay community needed to protect the infected from any source of disenfranchisement not only because it was the right thing to do for the presumed minority within our ranks, but because a near majority of the total community was actually infected.  This revelation clinched the profound social, psychological, and political identification of the gay communities with AIDS.  The identities of large, urban gay communities quietly but surely shifted from that of largely "normal" communities, humanely concerned with the future of an infected minority, to that of infected communities as a whole.  Although responsive to important new realities for gay men, this shift overlooked an immensely significant fact.  Even in our worst-struck communities, half the population actually remained uninfected.

These are the beginnings of what, in hindsight, can only be described as the disenfranchisement of uninfected men within larger, urban gay communities.  They are also the beginnings of our failure to sustain anything resembling a true primary prevention effort.  Community-based organizations, initially formed to spread the word about GRID and its speculated means of transmission, had pioneered AIDS primary prevention for gay men.  As increasing numbers of men proved to be HIV-positive or became ill, these same organizations quite naturally began a shift to the provision of services for these populations.  Compelled to serve, in part, out of personal experience, many of the men in these agencies were themselves HIV-infected.  The acute needs of those with HIV or AIDS began to quickly consume the total resources of not only individual agencies, but gay communities in their entireties.  Unprepared for the onslaught of suffering and illness, or the psychological, social, and economic pressures it generated, we were all necessarily "living with HIV" in some important senses.  Meanwhile, we were also supposed to be providing primary prevention for gay men - prevention that would have to adapt to the radically changing human and social realities created by the ELISA.  It is little wonder that primary and secondary prevention became entangled and blurred each other's purposes, and that true post-ELISA primary prevention would be stillborn.

By 1986, living with the emotional, social, and increasingly political horror of what we had reluctantly come to realize was a plague, the assertion of any needs by uninfected men were widely experienced by almost everyone as an affront to the more pressing, acute needs of those with HIV.  The widely touted "public health victory" in the gay communities - medically fortuitous, but also a fear-driven and humanly destructive abstention from sexual expression - was at its peak.  Uninfected men knew what needed to be known to remain uninfected.  Any explicit assertions of the needs of uninfected men - including the assertion, in occasional whispers, that it was not always easy to remain uninfected and men needed to talk about thatwere experienced as an affront to men with HIV or AIDS. 

Furthermore, if we explicitly asserted that it was better to remain uninfected, were we not implying that there was something "wrong" with being infected, aggravating already powerful, if unutterable, feelings that infected men were somehow culpable for their infection?  If a large segment of the community was planning 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 importance 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, or were long term survivors, what was so important about not having HIV? 

In this psychological and social climate, any explicit statement of the central primary prevention objectivethat it is important to remain uninfected and possible to do so - was, and still is, widely experienced as disenfranchising of HIV-positive men.  It calls into question many of the tenets that make their lives productive, reasonably happy, and possible at all.  If uninfected men were to stay uninfected, we needed them to think the worst possible things about infection, while infected  men needed to envision just the opposite.  Woody Castrodale, a longtime AIDS worker in San Francisco, summed up the dilemma succinctly:

For me, seroconverting would be a death sentence. But many of my positive friends talk about it as if it were simply a challenge , as if they had something like a new career opportunity.  It seems to me that such feelings are at the root of a very deep cognitive split in the gay community.

In this social and psychological climate, today's prevention is essentially pre-ELISA education "for gay men," but with some important changes.  Primary prevention needed to "retreat" after the ELISA and its revelation that half the community was infected.   The warnings or "scare tactics" of earlier education - tactics that threatened men with the dire and grotesque consequences of  infection - had to be eliminated, because such descriptions conflicted with what we were telling infected men to feel about being infected.  In fact, education had to stop explicitly telling men to stay uninfected.  On examination, today's primary prevention sometimes resembles pre-ELISA true primary prevention, and it is still, unfortunately, directed at undifferentiated populations of gay men.  More often, prevention  appears to be a mixture of true primary and true secondary prevention, which is "appropriately" directed at undifferentiated populations.  Most commonly, our "primary prevention" today is ambiguous enough that neither the purpose of the message, nor the intended outcome population can be determined without significant interpolation and interpretation.   Such education resembles commercial advertising that is coy about the product, and only intimates the identity of prospective purchasers.  These prevention efforts are confused and confusing, and they clearly fail to do what could be easily done: accurately define and address an outcome population and purposes appropriate to that population.   The general appearance of undifferentiated education is so familiar at this point in the epidemic that it is often hard to recognize, much less analyze, even though it almost invariably has certain identifying characteristics.  One easily overlooked, central characteristic of undifferentiated education is its routine and prominent inclusion of HIV-infected men as a target population, a practice that requires clarification.

Are Infected Men an Important Target Population for Primary Prevention?

Because infected men were both unknown and unknowing before 1985, they were properly part of the intended outcome population for primary prevention.  In post-ELISA primary prevention - to the extent that it is clearly conceptualized as primary prevention at all - infected men have continued to be a prominent target population that is often  more explicitly addressed than the outcome population of uninfected men.  AIDS educators often feel very strongly about including uninfected men in prevention.  The inclusion is supported - if at allby the explanation that infected men are the source of all infection, and that their behaviors are thus crucial to controlling the transmission of HIV.  In other words, infected men represent an important target population crucial to the outcome for uninfected men.  This explanation does not, however, explain why target and outcome populations are confused, entangled, or indistinguishable; why a target population might be more commonly named than the outcome population; why the objective of primary prevention cannot be named; or why the issues and needs of this target population are discussed at all in the context of primary prevention (unless the discussion will contribute to the outcome for uninfected men).

While it seems compelling to cite infected men as the source of all new HIV infections, it is also true that uninfected men are indispensable to every instance of transmission.  In truth, the human concerns and political climates in gay communities have created an assumption of inclusion for infected men, and advocates of true primary prevention have been placed in a position of  having to justify their exclusion.  If primary prevention is truly the objective, the exclusion of  any target population must be assumed until its utility for the outcome population is demonstrated.  There may be reasons that uninfected men, themselves, are an easier, more productive target for primary prevention; and an examination of  feelings about responsibility and  the consequences of transmission suggest that infected men may play less of a useful role in primary prevention than our current education would imply.

Feelings about Responsibility

There are many infected men who take unequivocal responsibility for not transmitting HIV:  "My HIV stops here," a friend, and worker in AIDS services once said.  But it is important to clarify that while an infected man can assert such feelings, the human politics within gay communities do not allow others to assert that the infected man ought to feel that way.  In other words, the infected man can offer, but others cannot ask.  In fact, many infected men quite understandably resent the idea that they should have any unique responsibility for uninfected men, and our post-ELISA education has constructed a standard for the gay community that supports that resentment. 

The standard - which in general does not distinguish between the issues and needs of infected and uninfected men - is intrinsic to the universally promoted idea that everyone be assumed infected, and, indeed, that even when a partner is known to be uninfected, he be treated as if he were infected ("a condom every time").   One unfortunate consequence of this standard - virtually axiomatic to undifferentiated prevention - is that it promotes "facts" that gay men know to be untrue.  These include the idea that, for all practical purposes, everyone is infected, and that we can actually spend lifetimes behaving as if that were the case. 

There are two very important consequences of this standard.  Gay men are often very inexperienced in trying to determine the real facts, and the responsibility for not transmitting HIV is not unequivocally assigned to either infected or uninfected men.  Because men are taught to globally assume everyone is infected, few know how to discuss the issues.  HIV is now commonly transmitted by an infected man because he assumes his (uninfected) partner would not be doing what he is doing if he were uninfected.  The uninfected man concurrently assumes that the infected man would not be doing what he is doing were he infected.  This extremely common miscommunication suggests that it may be precisely the sharing of responsibility for not transmitting HIV - the idea that all gay men are responsible in the same way, regardless of antibody statusthat is responsible for a significant amount of HIV transmission.

Although undifferentiated prevention cannot clarify this problem, properly focused primary prevention might.  As one possibility, it could change community standards by assigning the responsibility to uninfected men.  This would avoid any confusions generated by assumptions of "mutual" responsibility.  Such an approach would require clarifying another component of the unspoken community standard of responsibility: just as an uninfected man cannot expect an infected man to take responsibility, an uninfected man cannot imply that an infected man would not take responsibility, which is exactly what happens when an uninfected man insists upon taking it himself.  Infected men, according to the standard, must be subjected to neither ethical expectations nor aspersions , and this often leaves the uninfected man in a quandary that leads to infection.  "Communication skills," frequently offered by education as a solution to such problems, are not a tool that can be readily taught to an extent that allows addressing feelings of this complexity.  Education can, however, easily stop promoting the standard that creates the confusion and complexity in the first place.

That many infected men do not want the responsibility for protecting uninfected men and are not taking it is made clear by the incidence of seroconversion.  Common sense suggests that all, or most, transmissions of HIV cannot be inadvertentfor example, from a man who incorrectly believes himself to be uninfected.  There is also some quantitative evidence to support this idea, including at least one study which reported that in a group of 62 sexually active, HIV-positive men, 37 percent self-reported having unprotected anal sex with a partner whom they believed to be HIV-negative.   It is also my clinical experience that infected men are much less likely to insist upon protected sex outside a relationship than within one, and very often feel that casual sexual partners are responsible for protecting themselves.  Should primary prevention target infected men with such feelings in an attempt to encourage, build, or enforce "responsible" behavior?

While community politics do not allow the uninfected to expect the infected to take responsibility, it is also widely felt among both groups that the failure to do so is reprehensible -  position that infected men may voice, and often do, even to other infected men.   In fact, most infected men, including those who have knowingly transmitted HIV, would probably espouse this feeling.  Both the welfare of the uninfected individual, as well as the future of the gay community are logically perceived as important reasons to not transmit HIV.   But the feelings connected to sexuality for infected men are no less - and probably morecomplex than the feelings of  uninfected men.  It need hardly be said that feelings easily generate sexual behaviors that an individual might normally disapprove of or feel conflict about.  Many infected men have particularly complex feelings about sexuality, for it is often unconsciously felt that it was forbidden sexuality that infected them in the first place, and that infection is their retribution for transgression.  HIV infection may also be experienced as a condition of defectiveness, undesirability, or being a danger to others, all making opportunities for intimate contact with other men particularly important.   Envy of those who do not have to deal with the problems of infection, also produce - often unconsciousanger in many infected men.  The anger may be partly directed at uninfected men, some of whom shun the infected man, despite the fact that they are, after all, often uninfected by sheer chance.

One result of these very complex feelings is the extreme difficulty many infected men have in disclosing infection to any potential partner, sexual or otherwise.  This often torturous experience is a result not only of the infected man's feelings, but of the reality of many uninfected men's responses.  Innumerable HIV-positive psychotherapy patients have described extraordinarily insensitive or abusive responses from negative men that are a powerful deterrent to disclosure, and thus to HIV prevention. 

Infected men thus present a complex, psychologically volatile population for primary prevention - one that is even more complex and difficult for education to influence than the population of uninfected men.  Communication skills, especially in connection with disclosure of HIV status, must be addressed for uninfected men; and it may well be that they would be useful to address in defined ways for infected men too.  Protocol that now commonly exists between infected and uninfected men contributes to a lack of communication and miscommunication and is making important contributions to new HIV infection.

The role of infected men as a target population in primary prevention is a complicated issue that I have far from fully addressed here.  I believe their inclusion in primary prevention is extremely problematic, particularly in the social and political climate that breeds undifferentiated prevention.  In certain focal areas of primary prevention - for example, the problems of disclosure or the transmission of HIV to younger men - infected men may be a more important target population than in other areas.  In every case, however, the inclusion of infected men as a target population in primary prevention must be very carefully defined and judged solely by careful examination of the potential for changing the outcome for uninfected men.

How Undifferentiated Education Fails

Undifferentiated AIDS education, as it is now almost universally practiced, appears to fail in three primary areas.  It creates confused identifications between uninfected and infected men, and thus exacerbates largely unconscious feelings that contracting HIV is inevitable or desirable; it cannot identify and specifically address the distinct psychosocial issues of uninfected men, nor can it explicitly support distinct benefits for remaining uninfected; and, finally, undifferentiated education has created fundamental problems for the "marketing" of  community or peer norms in social learning theory-based education.

 Identity Issues

My clinical experience with gay men has clarified that undifferentiated education often exacerbates psychological conflicts that work against the primary prevention purpose of keeping uninfected men uninfected.  If uninfected men who desperately need community are disenfranchised because they are uninfected, infection offers the possibility of enfranchisement.  In failing to distinguish the very different results of unprotected sex for uninfected and infected men, undifferentiated education supports unconscious feelings that differences of antibody status do not exist.  In the Asians and AIDS primary prevention piece, the same man, the HIV-negative reader, who should be presumed the reader of a primary prevention message, is first warned that he is at risk by "having unsafe sex . . . with an infected person," but told a paragraph later that he is a danger to others.  A man of known antibody status cannot simultaneously be at risk and a risk, and the assertion is fraught with unconscious and destructive confusions.

In generating such confusion, undifferentiated education assists, rather than inhibits, entanglement of the identities of uninfected men with men who have HIV.  This individual process is assisted by the broader, historical community identifications I have already discussed, as well as the general public's perception and many gay men's internalization of that perception that AIDS is a gay disease, and gay men get AIDS .  "When I told my mother I was moving to California," a 24 year old psychotherapy patient told me,

she said, "If you do that you're going to get AIDS."  What she really meant was, "You're going out there so you can be gay."  For her, being gay means having AIDS.  And now that I've been here for two years, I'm beginning to think she's right.  I mean, if you aren't at least positive, you're sort of a nobody in San Francisco.  And anyway, if I keep having sex with guys I probably am going to get it sooner or later, and I guess the question isn't if but when. I'd be afraid to tell her because you know what she's going to say: "I told you so."

Pedro Zamora, a 22 year old, HIV-positive gay man and AIDS educator, was chosen as a spokesperson for the Q Action.  Mr. Zamora first came to national attention as the HIV-positive member of seven young San Francisco roommates in the Music Television (MTV) broadcast, The Real World .  A STOP AIDS spokesman told me that Zamora was chosen not so much for his background in education, as the hope that "he would create notoriety for the campaign, which is exactly what we've gotten."  In a published interview around the time of his selection for the Q Action, Mr. Zamora said, "My generation doesn't know of a time when AIDS didn't factor into a decision about sex," and draws the conclusion that young men have "no excuse . . . for not wanting to protect themselves."

Contrary to Mr. Zamora's conclusion, there are many social and psychological reasons young men contract HIV.  It is often precisely the fact that young men were born into the epidemic that creates a plausible and seamless integration of AIDS and HIV into their lives, and makes them vulnerable to infection.  Unfortunately, the appointment of a bright, persuasive,  attractive, young, HIV-positive man as spokesperson for a primary prevention campaign risks aggravating the plausibility of HIV infection for young men.  Sean, an HIV-negative psychotherapy patient in his early twenties, felt a relatively easygoing destiny about contracting HIV and we spoke about it often.

"People your age," Sean told me, "are always talking about the epidemic as something that's happened to them.  For me - I mean, it was just there when I grew up and became gay."

"So you feel that you have more acceptance of it than older people."

"You could call it that.  If it weren't for AIDS, I couldn't tell you what being gay would be all about."

"And how does that leave you feeling about contracting HIV yourself?  Is it important not to?"

Sean thought about my question for a moment.  "Yeah.  I guess it's fairly important."

This mix of denial and feelings of inevitability is exacerbated by the identification of negative men with positive men, just as it is with older men.  It was Sean who first called my attention to Pedro Zamora, and his appearance on the cover of POZ magazine - a glossy "lifestyle" magazine that appears aimed at an audience of well educated, middle class gay men with HIV.

"He's incredibly hot ," Sean told me, "and I understand he's going to be the leader of the Q Action.  They're going to have a lot of guys going to those meetings, even though he's positive."

"You say 'even though' he's positive?"

"Yeah.  That's why they put him on the cover.  They try to show in POZ that positive men are hot too - you know, that they have sex and are attractive and that they shouldn't be dismissed just because they're positive.  I agree with that."

"But you said 'even though he's positive' in referring to Zamora.  Do you have other feelings about him as well?"

"Hmm.  Yeah, I did say that.  I guess what I was thinking is, if you think about it, it's kind of weird.  They say he's a good AIDS educator though."

"And what's kind of weird?"

"Well, I probably shouldn't be saying this, but  here's this guy who's got AIDS, and he's going to tell the rest of us how to not get it."

"Is he contributing his experience with the problem."

"Like what he did wrong, and how we shouldn't do it?"

"Something like that."

Yeah, I guess he could do that.  But what I was thinking about is that Matt and I were sitting around reading the [POZ ] interview with him, and talking about how hot he is.  And Matt said to me, "I'd like to be exactly like himhe's got everything a queer queen could want.  He's got it made."  And I said, yeah, but he's got AIDS too.  And Matt said, "So what?  A lot of guys have AIDS.  I mean, he wouldn't be where he is if he didn't have AIDS.  He'd be hot, but that's a dime a dozen.  Guys who have AIDS get a lot more attention."

Such feelings are common.  They are particularly powerful for the young not only because of the seamless integration of HIV and AIDS into their development as gay men, but because, in general, young HIV-positive men do receive more attention, support, and social service within larger gay communities than their HIV-negative counterparts.  Had Q Action been clearly conceived as a primary prevention campaign, an HIV-positive man would not have been chosen as spokesperson.  An undifferentiated effort to address "young gay men" and their very real need for identity and community, does not qualify as primary prevention.

The Distinct Psychosocial Issues of Uninfected Men

In the shadow of the AIDS epidemic itself, a complex, destructive psychological epidemic has developed that is evident in the lives of most gay men.  I have written extensively on these psychological and psychosocial issues. The radical form of life - living in an apparently interminable plague - that gay men now routinely experience has predictably transformed who gay men  are, and therefore how they must be effectively addressed in prevention. 

Unrelenting loss, depression, anxiety, hypochondriasis, sexual and social dysfunction, and survivor guilt have become destructive components of many gay men's experience.  These issues have also entangled themselves in longer standing issues of gay men.  I have already mentioned feelings about "retribution," but there are many others.  Feelings about "sickness" because one is homosexual become entangled in feelings about being sick with AIDS; feelings about an unvalidated and hated form of life because one is a homosexual become feelings about living in a semiprivate plague; and feelings of guilt about being gay become feelings of guilt about having AIDS, not having AIDS, or not doing enough for those who do have it.

While some of these problems are experienced by infected and uninfected men alike, many are not.  Many uninfected men have a great deal of psychological conflict arising from not having HIV, and from anticipation of  surviving the epidemic.  In many ways they hold a special, not always advantageous, position in larger gay communities.

To its credit, the STOP AIDS Q Action aims at expanding prevention beyond simple informational and behavioral approaches.  It attempts to account for some of the psychosocial issues that clearly now contribute to new HIV infection, an absolutely essential effort  that STOP AIDS has been nearly alone in attempting among US agencies for several years.  The lack of community experienced by many young gay men is, indeed, one among many important psychosocial issues now contributing to HIV transmission.  Often feeling disenfranchised by mainstream society, excluded from "the gay community," and unvalued by older gay men, many young men have difficulty imagining a happy or productive future, or a society in which that future might be lived.  They thus experience lives less worth protecting.

Q Action's effort is hampered, however, by its creators' murky conceptualization of primary prevention.  The campaign fails to define and speak to its outcome population, and it is thus limited to discussing only issues that infected and uninfected men have in common, or issues that can be presented ambiguously . The first major pieces of the campaign included two sets of quotations from young men, each set consisting of approximately 30 quotations.  These words of young men themselves seem intended to help clarify how young men are feeling about fundamental, prevention-pertinent issues like a sense of community or the lack of it.  In the first set, two quotations (six percent) are from unequivocally HIV-negative men, and another four (13 percent) from men who might be interpreted as HIV-negative.  Three quotations (10 percent) are from clearly HIV-positive men,  with another from a man who suggests he is HIV-positive.  The other 22 quotations (73 percent) are from men of indeterminable antibody status.

The confused conceptualization of the campaign is concisely reflected in the astonishing inclusion of one quotation: "We need to talk about more than primary prevention.  We need to talk about reinfection.  And needle exchange."  This quotation - sounding more like the words of a professional educator than a 22 year old member of the gay community - may be among the feelings of young men.  But in the context of primary prevention, it diffuses, rather than focuses attention on the issues of the outcome population and supports the identification of uninfected men with infected men.  It does this by suggesting that young, uninfected men ought to be thinking about secondary prevention, infected men, and the medical issues of infected men.  There  may be some truth in the idea; but why, of all places, is the concern raised here?

The second set of quotations also warrants brief mention, because it, too, compromises primary prevention purposes.  The only two direct references to serostatus are, "I'm more willing to deal with people who have things about them that I don't particularly like if, like me, they are HIV-positive," and "I have little patience for people who are HIV-negative - they're not living through it, they don't really know what it's about."  The problems raised by including these two quotations in a primary prevention piece are obvious.  They express prejudicial and denigrating feelings about HIV-negative men, feelings that explicitly disenfranchise them and dismiss their issues.  That infected men do often feel - and sometimes express - such feelings is entirely aside from the point.  The issue is the expression of the feelings here.  A letter in defense of this campaign from the President and Secretary of the board of directors of STOP AIDS attempts to clarify this issue.

It is vital to acknowledge the difficulty we face in recognizing differences among our constituents without creating a polarization between men of different serostatus.  We see conducting programs [that] divide rather than help solidify our community in the matter of prevention of HIV transmission as irresponsible.

The seamlessness with which an important, exclusively primary prevention agency in one of the epicenters of the epidemic has taken on "constituents" who are not uninfected men, and adopted a responsibility to avoid "polarization" and assure "solidification" is a measure of the community confusions that have bred undifferentiated education.  These confusions exacerbate the psychosocial issues contributing to HIV transmission, by disenfranchising uninfected men in the way that people are always disenfranchised and kept disenfranchised.  The Q Action campaigns refuse to allow uninfected men to name themselves as a group, or to explicitly define - much less discuss - their issues and needs.  Quotations denigrating uninfected men are no less destructive in primary prevention than commonly experienced - if rarely voiced - derogatory feelings about positive men would be in secondary prevention.  Esteem-building for HIV-positive men is not a central, probably not even a peripheral, purpose of primary prevention, and in any case it must not be done at the expense of uninfected men.

Because undifferentiated prevention cannot acknowledge discrete identities, issues, and needs of infected and uninfected men, it cannot acknowledge that the outcome of successful primary prevention would be quite different for the two groups.  One of the most peculiar characteristics of undifferentiated prevention is an almost exclusive focus on the process of prevention, with rarely a mention of the benefits or results that might be obtained. 

The focus on process rather than results is understandable.  If we tell men simply to put on condoms , we can talk to infected and uninfected men simultaneously.  But if we wish to talk about the complex psychosocial reasons men are not putting on condoms, the discussion will have to be very different for infected and uninfected men.  Regarding protected sex, motivation is very different for the two groups.

Likewise, talking about results would require distinguishing infected and uninfected men and specifically addressing the issues of uninfected men:  If you are uninfected you can stay that way.  We cannot implore "gay men" to remain uninfected, for many are already infected.  Thus undifferentiated education typically resorts to ill-defined objectives - they hardly qualify as benefits - like STOP AIDS' "we can do something about AIDS, instead of letting AIDS do something to us."  Other objectives typically offered can be seen in the Asians and AIDS campaign previously cited:  "enjoying sex without fearing AIDS," and "making sex special by specializing in safer sex."  Not a single other benefit is offered in Asians and AIDS.  The benefits of not having HIV are not obvious to men who experience disenfranchisement, derision, dread, and guilt for their good fortune.  Why can we not simply suggest that uninfected men can "Not have AIDS," or "Enjoy sex without contracting HIV"? 

Educators are more likely to include something resembling benefits to the extent that they can be interpreted ambiguously.  This is done with offers that gay men can "Stay Healthy," "Fight for Life," or "Enjoy Hot Sex."  Such ""benefits" - although they might be about staying uninfected - equivocate completely on whether they are addressed to infected or uninfected men.  None require that the outcome population be named.  Any of these phrases might - were they in appropriate, focused context - be true primary or secondary prevention.  But if primary prevention were the intent, why not unequivocally say, "Stay Uninfected and Stay Alive"  instead of  "Stay Healthy" or "Fight for Life," phrases which are so often the implorations given to infected men.  Benefits limited to those which might be shared by infected and uninfected men leave out too many important and motivating benefits for uninfected men.

The confusions surrounding the benefits offered by education are illustrated by one of the most famous campaigns of the epidemic, the San Francisco AIDS Foundation's "Be Here for the Cure."  According to one Foundation educator "the beauty of this campaign is that it works equally well for both positive and negative men."   Wayne Blankenship, another Foundation educator, provided me with press releases for the campaign substantiating that it was intended as secondary prevention.   But in the same communication to me, Mr. Blankenship also expressed his concern that "there is not likely to be a cure for HIV, in the traditional sense of the word."  This "nontraditional" use of cure created much confusion.  Feeling or intuiting that the term was being used in some special sense, many uninfected men interpreted the campaign phrase as a metaphor for the end of the epidemic, and thus, as a primary prevention effort.  At the 1993 National AIDS Update, a well-known San Francisco educator defended the campaign's primary prevention purposes by telling the audience, "I have personally found 'Be Here for the Cure' very heartening."  At the same time, many infected men resented the promise of benefits that seemed unlikely or impossible.  The unclarity of the benefit in this campaign thus confused both infected and uninfected men, and was widely as interpreted as dishonest or peripheral.  "Why should I put my life on hold waiting for a cure?", an HIV-negative patient asked me.

Uninfected men commonly experience undifferentiated or confusing prevention that offers no benefits as not speaking to their issues.  Ambiguous messages - to the extent they are interpretable at all - are too often experienced as  being for infected men.  As the disenfranchised members of urban gay populations, uninfected men do not expect to be the object of community concern.

Social Marketing and Community Norms

Undifferentiated education has intrinsic shortcomings that are significant for social learning theory-based prevention.  The most important of these is the disenfranchisement of uninfected men, which is unavoidable in undifferentiated education.  Disenfranchisement occurs when primary prevention cannot name uninfected men, cannot distinguish their issues and needs from those of infected men, and cannot offer them distinct benefits for HIV prevention. 

Social learning theory proposes associating - coat-tailing - desired new behaviors to preexisting positive identifications between the individual and his community (or the individual and identified community leaders).  New behaviors are adopted because of the meaning and authority that preexisting, valued identifications hold for the individual.  If a man feels unrecognized by his community, those identifications do not exist.  The disenfranchised man thus has little motivation to adopt new socially normative behaviors - particularly those that occur in private, address sexuality, or seem to risk contributing to further interpersonal isolation.  The very ambiguity that characterizes undifferentiated prevention has made uninfected men an unresponsive target for the social marketing approaches of that very same prevention.  Prevention cannot hope to simultaneously destroy social identifications and exploit them for behavioral change.  In general , the use of social learning theory in communities of perhaps former, but ever ready "outlaws," is a delicate proposition.  Although a gay community may provide important social identifications, membership rarely remakes the character formed by years of conflict with mainstream society. 

Finally, among undifferentiated education's implications for social learning-based prevention is a serious, intrinsic limitation.  By virtue of its very nature - "universality" - undifferentiated education can market only one set of social norms. Before the ELISA this made sense because there was only a single community of men of unknown antibody status.  But knowledge of antibody status has become increasingly known to individual gay men, and in 1994 an estimated majority - about 60 percent - have been tested and know, or presume to know, their antibody status.  Knowledge of antibody status, whether accurate or not, is a huge contributor to a gay man's psychosocial identity and his sense of values, purposes, and needs in life, including relationship needs.  In this perception, gay men are far ahead of undifferentiated prevention, for many realize that a single set of "peer" norms for "gay men" makes no more sense with regard to sexual behaviors and relationships than it would for medical, educational, or financial planning.

Infected men, uninfected men, men of unknown or unsure antibody status, and men in serodiscordant relationships all have very different needs, and must be targeted with appropriate primary or secondary prevention.  Prevention must clarify and support, rather than smear or deny, these differences.  Men within seroconcordant relationships - probably of both types - have sexual possibilities that men in serdiscordant relationships do not have.  The unavailability of these possibilities to some gay men is no reason to deny them to all gay men. 

The paucity of benefits that can be offered by undifferentiated prevention - which treats all gay men as if their antibody status were unknown or different than that of their partners - is clearly revealed in one fact.  Men who do not know their antibody status stand to lose the most in true primary prevention.  These men must behave as if they were infected when the health of others is at issue, and as if they were un infected when the issue is their own health.  Thus men who do not know their antibody status must contend with behavioral restrictions that reflect the worst of both worlds - precisely what everyone must contend with under the standards of undifferentiated prevention.

Denial of the importance of these differences is an expression of  homophobic disrespect for the lives and sexuality of gay men.  We have never suggested to known seroconcordant heterosexual couples that they use condoms for the rest of their lives, or failing to do so, that they abstain from vaginal intercourse.  In its innumerable variations, "If you don't like condoms, don't fuck," is one immensely destructive hallmark of undifferentiated prevention.

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