Why We Stopped Doing Primary Prevention for Gay Men in 1985

How True Primary Prevention Might Look

True primary prevention will be easily recognizable because it will name and  speak explicitly to and about its outcome population of uninfected men; name its central purpose of keeping  uninfected men uninfected; explicitly state benefits for uninfected men who remain uninfected; and maintain clear and explicit distinctions between its outcome population and other target populations.  Primary prevention will help permit gay men to say out loud that they are uninfected without shame, guilt, or derision.  Thus “Stay Healthy” becomes “ If you are an uninfected gay man, we can help you stay uninfected“;  “We can do something about AIDS, instead of letting AIDS do something to us” becomes “You don’t have to become infected simply because you’re gay“; “It’s about our future.  It’s about our community.  It’s about commitment” becomes “Staying uninfected is about your future, your community, and your commitment to both”;  “Make sex special by specializing in safer sex” becomes “Keep sex special by remaining uninfected“; and “AIDS has affected everyone of us in one way or another” becomes “If you’re 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 .  Such changes will also help correct two other important problems contributing to HIV transmission.  These are the confused identifications between uninfected and infected men that make HIV feel like an inevitability for so many uninfected men; and the disenfranchisement of uninfected men, which exacerbates psychosocial issues contributing to infection, and makes uninfected men less available to social learning theory-based education.

Younger Gay Men

Older uninfected gay men experience confused identifications and disenfranchisement partly because of personal histories with the epidemic.  Older gay men lived through the pre-ELISA years of the epidemic, neither knowing whether they were infected, nor whom among their peers were.  This complex, historically rooted identification with being infected is partially responsible for the conflict and disenfranchisement many older men feel about being uninfected.

The situation for younger men is quite different.  Having never know a gay identity or gay community without AIDS, they may experience confused identifications with HIV.  But these identifications are largely not based in personal experience with the epidemic, and are thus less powerful and psychologically entangled than those of many older men.  Furthermore, young men do not enter gay communities feeling disenfranchised because they are uninfected, but learn disenfranchisement in vivo.   Thus for younger men, some confused identifications with AIDS and virtually all feelings of disenfranchisement for being uninfected are a product of undifferentiated education and the community values that support it.  It is crucial that younger men – everyone of whom enters the gay community in an uninfected condition – not be exposed to these influences.  At the present time, we are using publicly funded and generated education to acculturate young gay men into psychosocial confusions that exacerbate the transmission of HIV.

Peer Behavioral Norms

Implicit in what I have said about true primary prevention is the idea that social marketing approaches must tailor different sets of peer norms to different segments of the gay communities.  Norms must acknowledge that some men are infected with a transmittable, fatal virus, and some are not.  Primary prevention must make distinctions between uninfected men having sex within primary relationships and outside of them.  We cannot continue to recommend that two men in a relationship test, find they are both HIV-negative, and then go home and use condoms for the rest of their lives .

“A condom every time,” is another hallmark of undifferentiated education that has not been appropriate since large numbers of gay men learned their antibody status.  It, and other exhortations to “safer sex every time,” are unrealistic and destructive as  lifetime prescriptions.  They demand adherence to an often unsatisfactory form of an essential expression of human intimacy, and pose an impossible, monolithic task over a lifetime.  That task too easily generates discouragement and hopelessness, and drives many away from any effort to protect themselves from HIV, including efforts that could be sustained over a lifetime.

It is not a simple matter to determine when profoundly valued, ordinary – “unprotected” – human sex is appropriate.  But it is important enough that men are already attempting this determination without assistance from primary prevention.  Without assistance the determination may be made consciously and conscientiously, impulsively and carelessly, or simply unconsciously.  Some men are certainly now making the wrong determinations.  Undifferentiated norms of behavior have kept gay men ignorant of how such decisions can be made intelligently, and, indeed, have kept most from even openly discussing the possibility.  That many gay men are now becoming infected through bad decisions does not indicate that even more strident, global, and indiscriminate education is needed.  To the contrary, seroconversions today are partly a result of such education, because it withholds valuable information about obvious, desirable, and important possibilities – possibilities that are dispensable only to the extent that we are willing to homophobically dismiss the human importance of gay sex.

In 1994, the Victorian AIDS Council of  Victoria, Australia, and AIDS Vancouver, British Columbia both released campaigns acknowledging the importance of ordinary sex, and providing guidelines for “negotiated safety” within seroconcordant HIV-negative relationships.  The campaigns are remarkable for their acknowledgment of the real issues of uninfected men, as well as the respectful and validating way they portray gay sexuality and relationships.  The result is primary prevention that stands to help men remain uninfected because it facilitates the delivery of important benefits for remaining uninfected.  The VAC campaigns, especially, are notable for their brevity and clarity about an issue that American AIDS educators – when they have acknowledged the importance of the issue at all – persistently dismissed as too complex or dangerous to be handled in prevention education.

Target Populations for Primary Prevention

True primary prevention will primarily target its outcome population of uninfected men.  Other target populations will be included only to the extent that their inclusion offers a considered and defined possibility of changing the outcome for uninfected men.  The needs of other target populations will not be addressed in primary prevention, unless addressing those needs explicitly and directly bears on the outcome for uninfected men.

In the world infected men certainly have a bearing on the outcome for uninfected men.  Their inclusion in primary prevention, however, is a separate issue.  What must be demonstrated is not that infected men play an important role in the infection of others, but that targeting infected men in primary prevention is an effective and efficient way of changing the outcome for uninfected men.  In other words, the fact that HIV is vectored by infected men is, in itself, irrelevant.  Differences between the feelings of infected and uninfected men about responsibility for HIV transmission, differences in the consequences of HIV transmission for the two groups, and apparent problems with the “division of responsibility,” all suggest that the role of infected men as a substantial target population for primary prevention must be very carefully reconsidered.  To date, the failure to even distinguish infected men from the outcome population of primary prevention has not allowed us to examine this important issue.

Who Should Do Primary Prevention?

Primary prevention is now predominantly done by largely gay-staffed, community based organizations.  These agencies naturally possess an internal “culture” that reflects the psychological, social, and political issues of the larger gay communities in which they are located.  Virtually all, including the five major agencies in the US, are primarily “AIDS service agencies,” providing secondary prevention and direct services for infected men.  In all cases, they are secondarily providers of primary prevention judged by budget, staff, and publication allocations.  It seems obvious that in such “hybrid” agencies there are potential conflicts of interest between primary and secondary prevention, although these conflicts may be largely experienced and expressed unconsciously.  There is, however, no intrinsic reason that true primary prevention cannot be done within hybrid agencies.  Indeed, exclusive primary prevention agencies also experience problematic, socially rooted conflicts about primary prevention.  STOP AIDS, as one example, has always been a purely primary prevention agency, but it has also become an important promulgator of undifferentiated education.  Nevertheless, hybrid agencies present special, internal – structural as well as psychological – problems with regard to primary prevention.

According to its monthly newsletter of services, the AIDS Health Project of the University of California at San Francisco is entrusted with “the mission . . . to provide culturally sensitive counseling and education to stop the spread of HIV infection, and to help people face the emotional, psychological, and social challenges of living with HIV disease.”   The actual listing of services offered by the newsletter, however, suggests that primary prevention is a peripheral part of the mission.  The offering includes seven groups for infected men, and one for uninfected men.  There are also three groups for “HIV-Affected Clients” – which might mean uninfected men – including one for caregivers of those with AIDS,  one for caregivers of those with HIV dementia, and a third, “Drop-in Group for Meditation/Self-Hypnosis, open to anyone with HIV concerns, including caregivers and HIV-negative individuals.”  If these groups are for uninfected men, they seem largely aimed at helping uninfected men take care of infected men, rather than themselves.  This is not primary prevention.  Some sources of this typical neglect of primary prevention when it is entangled in secondary prevention are clarified in a description of the agency by its director, James Dilley:

Each program within the AIDS Health Project is designed to work with individuals at different points along the continuum between a state of health at one end of the spectrum and the clinical disorder of AIDS at the other.  Thus, individual programs reflect different levels of prevention.  For example, the Prevention and Support Services (formerly the Worried Well) Program is an example of primary prevention; i.e. services are provided to healthy individuals who are at risk in an attempt to keep them from contracting disease.  The HIV Positives Being Positive Program is an example of secondary prevention. [emphasis added]

The idea that uninfected and infected men exist on the same “health continuum” is an accurate reflection of the historically rooted feelings of the gay communities – and, unfortunately, of uninfected men who experience HIV infection as inevitable or desirable.   While Dr. Dilley makes clear distinctions between primary and secondary prevention in this quotation, it is also true that the AIDS Health Project appears to have embraced the idea that primary and secondary prevention are simply “different levels of prevention.”   Regarding potential survival and many important psychosocial issues, this conceptualization obscures the fact that uninfected men are not at all on a continuum with infected men.

HIV is not an inevitability for gay men, and men do not fail if they do not “progress” along the continuum from health to AIDS.  The idea of a continuum of health corresponding to different levels of “”prevention” – which so easily becomes a model for  a continuum of prevention – also commonly obscures the fact that very little of the continuum is actually primary prevention in terms of delivered program.  With all the important contributions the AIDS Health Project has made to the gay communities of San Francisco, it has provided minimal services, at best, to the outcome population for primary prevention.  When it has attempted to do so, it has become the object of political controversy, and, in this dilemma, the Project is in the company of most US agencies.

Thus the neglect of primary prevention, as well as the potential for supporting or generating confused identifications between uninfected and infected men, are two major risks in hybrid agencies whose conceptualization and organizational structures are not clear.   While the AIDS Health Project seems to fall largely in the category of neglecting true primary prevention, an example from the Cascade AIDS Project of Portland, Oregon illustrates the possibilities for confused identifications between infected and uninfected men.

The Men’s Prevention Project of Cascade initially published a monthly newsletter, Positive Connections, funded through “wellness support” funds from the County – wellness apparently referring to asymptomatic HIV infection in this case.  The very complex, almost unintelligible evolution of this newsletter during 1994 illustrates the difficulties an agency may have in clearly conceptualizing and delivering primary prevention.  Howard Dana, editor of the newsletter, explained the concerns behind its evolution.

Because we have been looking at the split in Portland’s gay community between positive and negative men, we decided to make some changes.  Too many negative men didn’t even know someone who was positive and they had no idea what positive men were going through and vice versa.

Feeling that “The Men’s Prevention Project” did not speak to uninfected men, the newsletter was moved to a program called Speak to Your Brothers .   This program is identified with the statement, “Together we will overcome fear, misinformation and disease.  Together we will build a strong and caring community.”  Thus the inclusion of uninfected men was to be accomplished by removing “prevention” from the name of the program sponsoring the newsletter – a necessary change because the agency, among many, had spent years teaching uninfected men that prevention was for infected men.  The name of the newsletter itself was also changed,  to Speaking Up, and the masthead then identified the newsletter with both the Men’s Prevention Project and Speak To Your Brothers .  Although the changes were made in order to include uninfected men, the publication data side bar clarified that Speaking Up was “A monthly newsletter by, for and about HIV-positive people and others affected by HIV.” At this point, uninfected men were to feel included by mention as “others affected.”   Finally, beginning with the August 1994 issue, the newsletter was described on the masthead as “A Newsletter of the Gay and Bisexual Men’s Community,” and in the publication data side bar as

A newsletter of Speak To Your Brothers at Cascade AIDS Project.  It is for all gay and bisexual men.  The focus of Speaking Up is to serve as a means of support, communication and education for this community.  Speaking Up is also a resource for the wider community which encompasses, supports and celebrates gay and bisexual men.

The developmental complexity of this single campaign – which resulted in a purely undifferentiated statement of purpose – reflects the confusions that surround most prevention today, and the difficulty of clarifying them within hybrid agencies.   Even a careful reading of  Speaking Up leaves one with doubt about its prevention purposes or its intended target populations.  The publication is a mixture of gay interest stories, secondary prevention, and primary prevention.  In trying to clarify the publication, Mr. Dana explained, “Speaking Up is really Positive Connections plus.”

A secondary prevention campaign for infected men – plus – is not a foundation for primary prevention.  Cascade’s difficulty in knowing what to do with uninfected men resulted in these men being shuffled around like orphaned and unwanted children within the prevention project .   The solution finally adopted was to enlist uninfected men in “the community’s” fight against “fear, misinformation, and disease.”  While this attempt may help make services for uninfected men more socially and politically acceptable, it is fraught with dangerous psychological implications.  Enfranchisement for uninfected men is conditioned on their joining the battle against AIDS.  Cascade’s solution echoes that of the AIDS Health Project in its first group for HIV-negative men:  Negatives Supporting Positives and Each Other .  Inclusion in the fight against AIDS cannot be the condition for enfranchising or reenfranchising uninfected men into the gay communities.

The issues that Cascade AIDS Project is dealing with are complex and difficult, reflect values and politics deeply rooted in gay communities, and are sometimes also influenced by funding requirements.  In terms of thoughtfulness and attention to important psychosocial issues for primary prevention, Cascade’s work is among the best being done in the United States today.  The extent to which their efforts – and the primary prevention efforts of virtually all agencies – remain problematic is a measure not of their failure, but of the broad community failure to clarify how heavily history and community feelings bear against all true primary prevention.

Whether hybrid agencies – indeed, anyone – can do true primary prevention will depend largely on the gay community’s clarification of its feelings and purposes, as well as each agency’s correction of conceptualizations and internal structures that reflect confusions.  In 1994, it is imperative that any agency doing primary prevention have an autonomous department of primary prevention that is distinct from other agency departments or services.  This should become a universal requirement for primary prevention funding.

Conclusions

Recent figures from a five year study of gay and bisexual men in Oregon echo the troubling figures we have seen elsewhere:  25 percent report unprotected anal sex in any given month, and 50 percent report it within the past year.  An even more disturbing finding of this study – one rarely reported, but probably predictive of most gay and bisexual populations – is that the number of men testing for HIV is declining, and today “almost half of the gay and bisexual men in Portland do not know their current HIV status.”  This trend bodes poorly for prevention, not because HIV testing is in itself primary prevention, but because it suggests discouragement about personal and community futures.  Men who believe they are HIV-negative – and can stay that way – test to confirm that.  Many men who do not test do not want to know if they are HIV-negative, do not believe they are HIV-negative, or do not believe the information is important one way or the other because, ultimately, they will be infected.

What do the realities of the epidemic, the gay communities, and our current primary prevention offer as benefits for being uninfected and confirming that with an HIV test?   Life in communities that hardly allow public utterance of the term HIV-negative ?  The possibility of  surviving to age 45 to see half of ones’ peers dead?  Disenfranchisement as the lucky and needless ones?  Lives lead in fearful, restricted sexual intimacy regardless of HIV statuses?  Life in communities that refer only to infected men as thriving, long term survivors ?  The inevitability of seroconverting later?

One feeling seems paramount among gay men as a consequence of a decade in the epidemic: everyone feels disenfranchised.  Infected men are commonly incredulous that men lucky enough to be uninfected might have any needs at all; uninfected men of color are often  incredulous that uninfected white men could experience marginalization by gay communities; and the infected survivors of dead lovers are sometimes incredulous that uninfected survivors of dead lovers could feel comparable grief.  Some of these feelings of disenfranchisement – and the resentment and anger it breeds – arise naturally out of the universally painful, if different, experiences of the epidemic itself.  In their own ways, both infected and uninfected men are deprived of lives they expected to lead and futures they expected to grow into.

Feelings of disenfranchisement, disappointment, resentment, and anger also arise from another painful, barely utterable fact of the epidemic:  there are possibilities for uninfected men that do not exist for the infected.  This fact not only creates feelings among infected men, but feelings of guilt – and resentment about “having” to feel guilt – among uninfected men.  If we cannot acknowledge that infected men cannot have all that uninfected men might have, and clarify feelings about that, we will continue to deny uninfected men reasonable possibilities for their lives, and thus fail in primary prevention.  Uninfected men could have many realities and hopes that are unrealistic for infected men – important realities and hopes about life, work, relationships, and sexuality.  But our primary prevention, as a reflection of our community, is mute about these possibilities because their utterance is experienced as an exploitation of inequity, a violation of community solidarity, and a betrayal and abandonment of those with HIV.   Unfortunately, these realities and hopes also provide the only incentives and motivations for a man to remain uninfected through a lifetime, sexually vectored epidemic.

What about the feelings of many infected men that the real meaning of primary prevention is that their lives are hopeless?  While these feelings are psychologically understandable, I do not believe they are accurate.  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 infected men often intuitively perceive that.  Thus, infected men have many realistic and important concerns about their positions in the gay communities and in society at large.  T hese 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 a betrayal or abandonment of those with HIV.  Explicit primary prevention can acknowledge the different paths of infected and uninfected men without implying that one is culpable or hopeless.  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 for those who are infected and thus too painful for all gay men.   Today, the epidemic and its trajectory within gay communities are already the product of a decision, if an unconscious one: we do not do primary prevention.  This is too important a decision to have made unconsciously.

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