Hope Against Hope: It's Time We Did Real Prevention

If 1968 was the Summer of Love in the Haight Ashbury, 1996 was the Summer of Hope in Vancouver, British Columbia.  As if overnight, the hope given official birth at last year’s International Conference on AIDS transformed the way HIV-positive gay men were to think – or are supposed to think – about themselves for the first time since the epidemic began.  The gay press, popular media, and, to some extent, professional literature were filled with the optimistic news which, if it could be believed, suggested that the epidemic was, if not over , clearly on its way out.  The lives of infected gay men seemed suddenly reborn.

The Vancouver Conference marked three years since the Concorde study had inspired unilateral hopelessness about HIV treatment by reporting that AZT monotherapy might, in fact, be worse than no treatment at all.  Science, medicine, and treatment activism was suddenly becalmed and drifting, and, because prevention thus seemed to offer our only hope, it quickly became the focus and purpose of our communities.  But we continued to desperately need something for those who were already infected, something that would penetrate HIV’s apparently seamless invulnerability and, once again, provide hope.  A knockout anti-viral would be a welcome miracle, and even a solid punch would do.  And then last summer, almost as if from nowhere, the three-drug protease-based “cocktails” seemed suddenly to offer the solution.  Many positive men using them were already showing dramatic improvements in health and quality of life, at least in the relative short term.  The results were encouraging enough that many began to feel hope for a “normal” future, with all its opportunities, tribulations, and uncertainties of a different kind.  Furthermore, the low – sometimes “undetectable” – viral loads achieved by the cocktails offered hope of (as yet undemonstrated) reduced transmissibility, which might help assuage the feelings of many positive men – often unconscious, but always destructive – that they are “diseased and contaminated,” and a danger to the very ones they love.  Infected men might join other survivors of the epidemic, and, together again, we might all feel hope that the suffering, loss – and hopelessness – were finally over.  We might even again make love without the nagging, intrusive fear that we were also killing or being killed.

For all the compelling hope we have attached to these new treatments, their promise has also raised a dogged, epidemic-long specter, that of false hope.  Certainly our hope for treatment has, to some extent, denied doubt.  But authentic hope exists only in an authentic examination of doubt.  HIV-negative gay men have always had much more doubt about HIV treatments than they would ever communicate to positive men, and, privately, many have expressed doubt about the promise of Vancouver.  As if to substantiate such doubt, the protease cocktails were hardly out of the laboratory before they gave birth to a new category of gay men to join the ranks of negatives and positives:  “non-responders.”  These men – who cannot tolerate, or do not clinically benefit from the new cocktails – together comprise at least half of all infected gay men, not including those who cannot access or afford the drugs.  Straggling hopelessly behind the well-publicized, if elusive, back-to-work tidal wave in gay communities, non-responders often experience a sense of personal failure, a feeling that they are lost and irredeemable, forgotten and abandoned.  But, even as their lives feel eclipsed by our almost exclusive focus on the success of new treatments, non-responders – living proof of the old days of awful possibilities – bring up for all gay men nagging seeds of doubt about our optimism for a relatively untroubled future.  We have thus abandoned the physical and human needs of non-responders to an extent that no one would before have dared abandon positive men, even during the short-lived, post-Berlin age of prevention activism.

Among “responders” themselves there is much more doubt – and many more complex feelings about successful treatment – than our public voice of hope usually acknowledges.  Many doubt the durability of treatment and live with extraordinary uncertainty about their futures.  What will the positive man, who has forfeited disability benefits and returned to work, do if, once again, he becomes unable to work?  If community, family, and friends experience such relief at even the possible end of the epidemic, how will they feel – and respond – if it is not really over?  Already, much of the support for responders and non-responders alike has been supplanted by the relatively unconcerned expectation of success.  Other’s expectations – one way or the other – have shadowed infected men throughout the epidemic, and have always threatened to dictate how a man was to feel and what he was to do about his condition.  When expectations turn optimistic, they often gives rise to fear of failure, and to abandonment by those who might be disappointed.  Suddenly, in a scant year since Vancouver, the peculiar security, clarity, and purpose of the HIV-positive condition have been stirred and muddied by precisely the possibilities we had hoped for.

Skeptical negatives, non-responders, and the complex experiences of responders aside, our communities are now publicly attaching an extraordinary amount of hope to the treatment of HIV infection.  In the scant year since the Vancouver Conference, the treatment of HIV – as opposed to the prevention of HIV infection – has come to play a dominant, almost exclusive role in our total agenda for the epidemic, and thus for the future of gay male communities.  It is the near-exclusivity of this hope in our agenda – not the important, essential hope itself – which clarifies both some important feelings about ourselves and some reasons we have done so poorly in curbing new infections over the past ten years.  We are a shamed and stigmatized minority caught in an epidemic vectored by one of our most stigmatized behaviors, anal sex.  While we know that we do not get HIV because we are  gay – for example, as retribution for transgression – it is true that most of us would not have HIV had we not been gay.  The confusion of these two ideas – of cause with  circumstance – is often deliberately promoted by homophobes.  Unfortunately, this confusion is also supported by our own, often-unconscious feelings – not ideas – of shame about being gay, anal sex, and having HIV.  This synergy has led us to routinely defend HIV infection itself as if we were defending the very right to be gay: As one man recently signed a letter to me, “PWA and proud.”

Almost from the beginning of the epidemic, we felt and acted as if the “acceptability” of gay life hung on the acceptability of HIV infection.  That so many of us have HIV feels like proof of our culpability, and because we feel the need to deny culpability for being gay, we also feel we must deny the undesirability of HIV itself.  Thus, from the moment we discovered that fully half of us were HIV-positive, we have found it nearly impossible to do effective HIV prevention because we have found it nearly impossible to assert the obvious:  Even as HIV ought have nothing to do with feelings of shame, guilt, failure, or contamination, HIV is not an asset, is nothing to be proud of, and is not a badge of honor.  If some men are able to live with AIDS, it is better – much better – to live without it.

Even as we sustain hope for HIV treatments, it is critical that we help our uninfected stay uninfected by doing prevention which is allowed to clearly say that, all else being equal, HIV infection is undesirable .  To date, our HIV prevention – an effort which is, after all, exclusively for the benefit of uninfected men – has been almost completely compromised by our fears about how real prevention might affect those already infected.  Can we say that remaining uninfected is very important, that there are big benefits to being uninfected, or that being uninfected provides important possibilities without simultaneously implying that maybe the lives of infected men are, after all, hopeless, deprived, and limited?   This is the problem we have never managed to deal with:  How to assure the infected half of our community that they need not feel shame or culpability for their infection, even as we say to the other half that it is very important that they not be like the infected half.  Unable to face this dilemma, we have resorted to ambiguous, halfhearted prevention which tells all “gay men” – regardless of HIV status – to use condoms, with no regard to the differences in why infected and uninfected men might do that.  We urge each other to “Fight AIDS,” in the unconscious hope that no one will quite know what that means – to fight the disease within our own bodies or to stay uninfected – and no one will feel hurt, stigmatized, or abandoned.

When hope that we might actually make HIV infection livable and acceptable has been strongest, our will to do prevention has always been most compromised.  It was during the Age of AZT – and now, once again, in the Age of Vancouver – that hope about remaining uninfected has appeared to most threaten the hope of those already infected.  Would not the insistent voice of prevention, at this moment, feel as if it implied that the lives of infected men are, in fact, hopeless and their hope futile?  The most vulnerable in our communities, the young, have grown up learning of gay life and the epidemic in the same instant.  They do not remember AZT, much less its crushing disappointment.  For them, we have a responsibility to keep hope alive that they might stay uninfected, to express our hope in uncompromised prevention – and to stop infecting them.  For these young men – a group we have typically both ignored and exploited – the promise of Vancouver has already added too much plausibility to HIV infection by providing yet another is a long line of reasons that having HIV is, if not desirable or inevitable, at least “O.K.”  Our alternative is to learn how to feel O.K. about ourselves – but really O.K. – so we no longer feel the need to say that we are “positive and proud” – or, for that matter, negative and guilty.  If we could do just that, we would no longer continue to get infected – at least not in such spectacular numbers – because we would no longer feel that we are fags, fags get fucked, and AIDS is what we deserve.  Even as we sustain every hope for effective treatment of HIV, we must keep hope alive for a shameless and guiltless age as free of HIV as possible, an age about being truly loving of ourselves and each other.