Michael Scarce is someone that makes you reflect a lot. He is renown in publishing one of the first analyses about barebacking phenomenon [1] and by drawing up the first sexual harm risk reduction rules [2]. Writer, researcher and also activist, Michael has recently published an article which caught up our attention and encourage us to ask him an interview. This time he goes back to the recent dealings of the prevention policy.

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The homophobia and obsession with chastity in the policies of George W. Bush’s presidential administration have been a setback to HIV prevention. What might change with the election of his successor, Obama ?

Two things come to mind with respect to the shift of political winds during Obama’s election : First and foremost is a renewed sense of hope within the United States, particularly among the disenfranchised, and especially among African American communities. HIV continues to devastate Black gay men in the United States. Obama has articulated a sophisticated and astute understanding of the multiplicity, historical legacy, and mutual reinforcement of oppressions not only between populations but also among them. In his recent attempts to reform health care in the U.S., he has also demonstrated a commitment to simultaneously addressing the social inequality that gives rise to health disparities. These initiatives have not been popular or easy, but at long last they have the best chance ever of actually succeeding.

Secondly, whereas the Bush administration had rewarded opportunistic corruption to the brink of a social and economic meltdown, the Obama administration has voiced a commitment to ending the exploitation, greed and self-interest that has become so entrenched and normalized in both government and private institutions. Sadly, this trend of corruption has also become commonplace in HIV prevention, corresponding with an unprecedented lack of accountability in self-proclaimed “community-based” AIDS organizations. These are agencies and services born from grass roots activism that, over time, have systematically excluded, alienated, and turned against the very populations they claim to serve. In terms of funding, Crisis = Money. Disease = Money. Risk = Money. The more AIDS organizations can portray their communities as unhealthy, sick, and high risk, the more they are rewarded financially and politically. That needs to change. Funding decisions should involve a merit-based equation that rewards successful programs. Success should be measured in terms of community involvement, authentic collaborations, coalition building, and genuine stakeholder participation rather than simply counting the number of condoms used.

Far too many bloated HIV prevention programs, especially the never-ending onslaught of social market advertising that bombards gay men, continue to drain resources better spent on helping gay men improve their own health. HIV prevention has lost sight of its original goal : to reduce illness, suffering, and death. Along the course of the epidemic, that original goal became equated with eliminating HIV transmission. We began to count the number of new infections, using HIV incidence as the marker for progress. The secondary marker we measured was the number of times condoms were used during anal sex between men. That original equation now falls woefully short in calculating and representing the state of HIV and AIDS in the United States. It did not anticipate the advent of protease inhibitors and other drug therapies that extend the number of years people live, the ways in which those drugs alter people’s quality of life, or non-condom factors that influence individual risk (sexual networks, sero-sorting, sero-adaptation, viral load of one’s sex partner, and so on).

Measuring HIV prevention’s success by counting seroconversions rather than 
assessing the impact of HIV on one’s quality of life or even years of life expectancy is reductive and dangerous
. It mirrors a problem inherent to the professional practice of epidemiology : we need more qualitative methods in addition to quantitative methods. Simply counting things is inadequate. We need to know why things happen, why people engage in behaviors, what those behaviors mean , and more.

The tunnel-vision obsession with counting infections is all or nothing, and harmful in its oversimplification. For example, many organizations make consistent reference to mission statements such as : “to prevent HIV transmission among all gay, bisexual and transgender men” as justification for extremist public health measures that advocate for public policies, laws, and even taxes that erode civil liberties and violate human rights. These missions are invoked as a convenient technicality to conduct what England’s Sigma Research calls “HIV prevention by any means necessary.” Preventing infection should remain a goal, but should never be our only goal. To do otherwise ignores the diversity of ways people prioritize HIV among their myriad of health concerns. It denies the socioeconomic realities of access to treatment, dismisses the value of treatment as a form of prevention unto itself, shores up the artificial division between care and prevention, and renders itself unaccountable to those already infected because HIV positive people come to represent a failure in meeting HIV prevention’s unrealistic goals.

You have called for a national watchdog coalition for HIV prevention. Why ?

Obama has repeatedly emphasized widespread evaluation of programs and resources, and promises the elimination of programs that aren’t effective. I am convinced HIV prevention has not only failed most gay men in the past decade, but also surpassed negligence to the degree of consciously inflicting harm in many cases, damaging us in ways we are only beginning to understand. We have been bombarded with social marketing that blames and shames us, for example, including incredibly stigmatizing campaigns such as “HIV is no picnic” and “HIV : not fabulous” [3]. They are horrific in their portrayal of HIV-positive people as lepers, as diseased carriers that should be avoided and regarded with disgust. We have been too busily distracted and overly preoccupied by perpetual crisis to conduct a comprehensive evaluation of what works, what doesn’t work, by whom, and for whom. It should come as no surprise that unethical behavior has grown rampant in the absence of a routine audit of HIV prevention, conducted by external bodies without conflict of interest. Until such a process can be established, a watchdog group is more than warranted to monitor and call attention to harmful prevention practices conducted in the disinterest of affected communities.

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10 years after the polemic about barebacking, is condomless sex still a hot issue in your country ? Is it possible to practice condomless sex and be socially accepted ? What effect have public health and community organizations had on condomless sex in the last ten years ? Warning has created the concept of seroadaptation, which has the characteristic of overstepping oppositions generated by the serosorting concept. Could this concept be promoted among the gay men’s health and prevention institutions in the United States ?

Condomless sex remains a hot issue in the United States, but only among those working in the industries of porn and public health. In the late 1990s, I worked with other writers and activists to shed light on barebacking – not to judge or eliminate it, but rather to understand it’s complexity and meaning, and question why it had emerged during that particular cross-roads in the history of the epidemic. In the years that followed in San Francisco, public health officials continued to parrot the usual alarms : “Unsafe sex is increasing ! Rates of rectal gonorrhea are increasing ! Syphilis rates are the highest in over a decade !” They manipulated interpretations of statistical data to herald the dreaded Second Coming of HIV infections. Several years later, they became baffled when the Second Coming of doom and despair failed to ensue as they had predicted. Epidemiologists were puzzled by what they saw as an inherent contradiction : the lines on their graph charts representing condomless sex had risen, and the lines representing rates of new HIV infection had dramatically fallen. The Condom Code had completely blinded them to what was happening in their own back yards. Just as safer (as compared to safe) sex acknowledges a spectrum of possible safety, we still lack the concept of unsafer sex to refer to sexual harm reduction strategies.

By 2004, after years of deliberation, epidemiologists eventually reached a consensus that barebacking among men of the same HIV status had been a primary driver of this decrease in San Francisco infection rates. Without fanfare or public comment, the Condom Code was unofficially repealed behind closed doors of health departments everywhere. Suddenly, a “multi-faceted” approach to prevention work became common sense.

This posed an interesting dilemma, however. Public health had already condemned barebackers as murderous and suicidal, despite the fact that the overwhelming majority of research on barebacking indicated it was largely happening between men of the same HIV status. Even worse, public health had turned its back on the very men who had achieved what seemed an impossible feat of productive change. If “Use a condom every time”. is all you have to offer gay men, how can you assist those who have made a decision not to use condoms, let alone involve them in sweeping strategies of innovation ? Instead, barebackers were chastised like misbehaving children and then abandoned under the false belief they would deservedly self-destruct.

In the meantime, HIV prevention organizations shamelessly clamored to take credit for the drop in San Francisco infections, even though their data showed it was not the result of organizational or institutional HIV prevention programming [4]. This is what is known as a “post ad hoc” fallacy of logic : attributing the cause of something to a coinciding past event that is, in actuality, unrelated. Far from this grandiose posturing, the dramatic drop in infection rates was in fact the outcome of a collective, decentralized, intuitive movement among gay men who had invented ways to care for each other and for themselves that did not involve condom use. This involved a formula that equated pleasure with health rather than death. It did not occur because of HIV prevention, but rather in literal spite and open defiance of it.

With this realization, public health officials were unwilling to admit they had been sorely mistaken, let alone apologize for their unqualified slandering of gay men who were barebacking. To do so would have tarnished professional reputations, compromised the facade of institutional consensus, tainted the illusion of well-placed trust, and called into question the fundamental authority and credibility of medical science. In essence, it would have jeopardized a significant amount of power, privilege, and elitist claims to scientific knowledge that had been so carefully amassed over the course of the epidemic. 
In a scramble for spin control, epidemiologists issued press releases and published research journal articles, cleverly claiming it as their very own scientific discovery. Every great discovery deserves its own unique name, and barebacking was redefined by renaming it “sero-sorting”. HIV prevention in the United States had grown incredibly stale at the time, further hindered by conservative government restraints on sexuality research. Revelations of any kind were infrequent or nonexistent in most fields of scientific sexual inquiry. Study after study was published yielding few significant insights because the kinds of research needed to do so had been explicitly banned by the Bush administration. Excited by this “discovery” of sero-sorting, many HIV prevention organizations are now attempting to capitalize on public health’s co-optation of barebacking, appropriating it in ways they believe can be adapted for a new set of proscriptions, interventions, guidelines, and even legislation. Researching something to better understand it is sensible. Researching it as a prerequisite for imposing authoritarian control and regulation is quite another matter.

Other than a recipe for disaster, I can only describe this aspect of the relationship between gay men and public health in the United States as ongoing structural violence. Paul Farmer, a prominent medical anthropologist doing international ethnographic work on HIV, was among the first to apply this term to AIDS. He defined structural violence as the systematic domination, exploitation, and oppression of a population resulting in their denigration, stigmatization, sickness, and death. In essence, structural violence affects the health of people by marginalizing them. Around the world, HIV status is equated with some degree of differential social status. Structural violence operates by reinforcing inequality on the basis of hierarchical status, and can be attributed to the actions of specific organizations and societal institutions. In short, people are violated through the denial of not only equality but also freedom of opportunity because they are branded as somehow “less than”.

I love the French translation for sero-sorting : sero- triage , because it reveals the hierarchical nature inherent to its meaning. In English medical terminology, triage is a word that is used to describe the way sick or injured people are ‘sorted’ for preferential treatment into primary, secondary, and tertiary categories. The type, extent, access, and speed of treatment depends on how one is ‘ triaged ’ – i.e., sorted and labeled, by someone in a position of authority and medical expertise. Americans have a great deal to learn from French theorists and activists around sero-sorting and concepts such as sero-adaptation [5]. That’s why I’ve adopted their language of sero- choice or sero- preference, because it allows for individual agency and the exercise of free will to choose without the need to judge and categorize others in damaging ways. It becomes a personal and private decision, not a public decree or commandment.

In 2006, the San Francisco Department of Public Health spawned a citywide advertising campaign that announced, “Status sorting is an effective method of HIV prevention”. They believed ‘sero-sorting’ was too technical and confusing, renaming it as ‘status sorting’ [6]. San Francisco’s STOP AIDS Project has since renamed it yet again as ‘smarter sorting,’ as if gay men who do not comply with their organizational directive are somehow dimwitted or moronic in their choice of sexual partners. Millions of dollars have been squandered on marketing these concepts to underestimated, intelligent, and experienced consumers who just aren’t buying it.

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Shortly thereafter, the San Francisco Human Rights Commission issued a formal statement critiquing the campaign as divisive and stigmatizing [7]. Aside from this admonishment, the campaign fell flat with its audience, primarily because public health was patronizing gay men by telling them not only something they already knew, but something they had invented in the first place. My perception is that gay men in San Francisco, and most other large urban centers, have largely tuned out HIV prevention due to substantiated distrust, including a barrage of over-hyped misinformation and distorted truths. After twenty years of fear mongering, contradictory messages, and scapegoating, it is unsurprising that we have chosen to ignore the misguided efforts of HIV prevention and fend for ourselves. It remains to be seen how history will be recorded in describing this era. My current writing and research aims to make a dissenting contribution to the mainstream of this endeavor. That’s one of the central themes of my next book, Parables of Gay Men’s Health.

Perhaps the only thing more difficult than escaping an abusive relationship is repairing and rebuilding it, and that is exactly what must happen in the United States. The Second Wave of the gay men’s health movement served as our escape route. Ten years ago, we sought shelter at the first National Gay Men’s Health Summit in Boulder. We created an opportunity for like-minded refugees to congregate and devote energy to gay men’s health without AIDS taking center stage or overshadowing everything else. We needed that time to catch our breath and take inventory of what was happening around us. Much has changed since then, and much more change is needed. I am not suggesting that gay men’s health movements exclude, disavow or diminish HIV prevention. Quite the contrary, I am calling for the Third Wave of the gay men’s health movement to reclaim HIV prevention, to once again share grass roots ownership of it with others, and begin to hold each other accountable for our actions as we move forward in ways that are mindful, honest, ethical, and transparent. Programs unable or unwilling to abide by these fundamental principles of justice and fairness should be dismantled.

Thanks Michael !

 

(Interview made in September 2009)

 

[4Cf. Ben Perkins’ analyses from AIDS Action’s MALE Center, http://www.aegis.org/NEWS/BAYW/2005/BY050703.html.

[5Cf. “[Seroadaptation instead of serosorting : a broader concept and a more precise process mode lhttp://www.thewarning.info/spip.php…]”, 2008.

Commentaires

mardi 11 décembre 2012 à 09h00 – par  tudor

what an eye opener ! they are things I have always felt and even applied in my HIV work and gay activism, but it’s such a relief to know that I am not alone, especially when I work for a global health organization which takes pride in its fierce « only condoms, always » approach.