Friday, October 24, 2008

STOP AIDS Project's social quarantine approach to HIV prevention

If this particular misuse of social network theory is the future of HIV prevention, I want no part of it, and I will do everything within my power to stop it.

by Michael Scarce

In their social network approach to HIV prevention, STOP AIDS Project in San Francisco has launched an attempt to segregate older and younger gay men to prevent new infections. Defined as "preventing disassortative mixing," the self-described community based organization has received a $200,000 research grant from the University of California to implement experimental structural interventions to "pull high risk and low risk men apart" in social environments such as bars and interactive web sites. Disassortative mixing refers to sex between men with differing characteristics such as race and age.

Jen Hecht, Education Director for STOP AIDS Project, and Dan Wohlfeiler, former Education Director, have stated, "Young men’s greatest risk of infection is having sex with older men, who are more likely to be HIV positive."

Although they assert a dedication to respecting human rights and freedom of choice, they liken their interventions to other public health prohibitions such as bans on smoking in public spaces. These comments are disturbingly reminiscent of conservative groups' recent call for restricting gay men's freedoms based on community-acquired staph infections. The groups based their argument on the notion that infected gay men pose a danger to the "general population," citing legal bans on smoking in public places and demanding similar legal intervention to prevent "second-hand sodomy."

In a meeting earlier this year, the collaborative research team described a scenario in which a door man turned away a group of younger men who attempted to enter a gay bar frequented by older gay men. The scenario was described as a positive and idealistic example of the kind of effect they hoped to achieve in their prevention of "mixing." In a recent national presentation to other public health organizations, Wohlfeiler displayed a slideshow containing a cartoon image of an older, Tom of Findland-like gay man with a mustache, leather jacket, and bulging crotch. He remarked:

"It's an older gay male icon, and the reason I put it there is: Years ago there were a number of young men who would come into the STOP AIDS Project and say, 'We don't want to have... If we want to be safe, we avoid having sex with guys who have leather jackets and mustaches,' by which they meant somebody considerably older. And of course we all laughed, and said, 'Oh, that's silly. That's not very protective.'

But in fact, one of the riskiest things a young person can do is have sex with somebody who is much older. And for gay youth, you know, and straight youth, that's been born out to be true, that age of partner is sometimes more important in terms of their risk than the frequency of condom use, their drug use, and other individual factors."Wohlfeiler fails to elaborate exactly how the age of one's sex partner is more important than condom use in becoming infected with HIV.

STOP AIDS Project's attempts to coerce and manipulate gay men's behavior escapes the oversight of the University of California's Human Subjects Research Review because it operates on a community level rather than directly affecting specific individuals. The research grant assures community involvement at each step by consulting with a number of community advisory boards for each of the social venues, despite the fact that the boards have never met monthly and none of them have met for nearly a year.

Their work relies on highly biased statistical data gathered during the course of street outreach to San Francisco gay men, and invokes the notion of "core groups" akin to the early days of the epidemic. In the early 1980s, the Centers for Disease Control identified a "4-H Club" of risk groups that included hemophiliacs, Haitians, homosexuals, and heterosexual prostitutes. The resulting stigmatization of certain populations based on demographic characteristics associated with HIV infection led to widespread discrimination, social isolation, and even violence against these groups of people. For these reasons, the Americans With Disabilities Act of 1990 included explicit protections against discrimination not only for those infected with HIV, but also for those who were wrongly perceived to be infected based on other characteristics or for associating with infected individuals. Other federal legislation guarantees fundamental civil rights that include equal access to public accommodations such as bars, regardless of one's HIV status or age.

Attempts to "fragment sexual networks" of gay men might sound like objective epidemiological science, but they ultimately serve to divide our community.

This cultivates ageism and the stigmatization of those infected, creates a false sense of safety equating youth with lack of risk, further socially isolates HIV positive men, prevents intergenerational mentoring, erodes our civil liberties, and destroys our collective access to forms of social capital and other assets that produce and protect our health.

I have left my position at STOP AIDS Project because I refuse to support work that damages gay men's health in these ways, and because I have been repeatedly harassed and disciplined by Jen Hecht and other members of STOP AIDS Project management for opposing what I believe to be unethical, illegal and discriminatory practices. If this particular misuse of social network theory is the future of HIV prevention, I want no part of it, and I will do everything within my power to stop it.


Read "Ask Gay Men What They Want and Need" - also by Michael.

2 comments:

  1. we should start thinking that prevention is not the choice. i am around 40 and get infected 7 months ago. i have hiv+ friends and all the information. i used to use condom 90% of my sexual relationships and i get it. so prevention is not for our human behavior.
    so it is a great work. it put me away from the virus for 20 years but not anymore. so we need a real cure and press the goberment to do it. cientist are very clever. it is not impossible

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  2. The Executive Director of the STOP AIDS Project posted the open letter on the Gay Men's Health Ning on this issue and I share it here:


    We at STOP AIDS Project acknowledge and encourage a dialogue about how best to address GBT men’s health, a topic which is of crucial importance to GBT men. We appreciate Michael Scarce’s participation in this dialogue and recognize the Gay Men’s Health Summit’s role in fostering it. To be clear from the outset, Michael Scarce and STOP AIDS Project agree that segregating older men from younger men for the purposes of preventing the transmission of HIV is unquestionably wrong. Doing so would be against our values as an agency and as individuals who work in the field of GBT men’s health. We wholeheartedly agree that constant vigilance is necessary to ensure the implementation of programs that are consistent with our personal, community, and agency values.

    It is also important to note that we have not launched any of the new programs from the study Michael cited and will not do so until we have satisfied concerns about their practical, epidemiological, and ethical appropriateness. Program ideas from this study have been discussed with focus groups and will be posted online for feedback before we move forward, and we invite you to participate in that process. We believe that we are acting cautiously and responsibly as we forge into new HIV prevention territory and welcome appropriate and healthy discourse about these issues as we move forward.

    Having said that, we need to acknowledge that Michael’s critique seems to be divided into two distinct halves, the first being the launch of an important community dialogue about the use and potential misuse of sexual network paradigms in HIV prevention, and the second an ad hominem attack on the agency and specifically-named current and former staff members. As it is illegal and inappropriate to discuss personnel matters, it is only to the first part of Michael’s comments that we will respond, both to address some misunderstandings that seem to have unfortunately arisen, and to invite community members to join in the ensuing energetic and healthy discourse.

    Like many of the readers here, STOP AIDS Project understands that new approaches to fostering GBT men’s health and preventing the spread of HIV are needed. As most people can attest, attempting to try new things is much more difficult than resorting to the same set of tools over and over again. However, STOP AIDS Project as an organization and as a group of dedicated individuals is committed to taking on new challenges that improve GBT men’s health outcomes. In doing so, we welcome community partners as we generate new ideas.

    STOP AIDS has helped lead this pioneering effort to use sexual network approaches to address a simple fact: though vitally important, HIV prevention efforts that focus almost exclusively on getting men to wear condoms leave much to be desired not only in terms of decreasing the rate of new infections, but more importantly in terms of building community, addressing the underlying causes of stigma and isolation, and supporting the assets and resiliency factors that already exist in the GBT community. STOP AIDS Project recognizes that sexual decision-making is influenced by any number of individual psychosocial and behavioral factors like self-esteem, joy, lust, love, desire for intimacy, and substance use. Furthermore, our sexual decision-making is also influenced by macro-level factors like racism, homophobia, ageism, socioeconomic disparities, and HIV/AIDS stigma (to name a few). In our work we also take into account that our sexual decisions are also influenced to a large degree by who our partners are, and where we fit in a sexual network.

    For example, if your partner barebacks more than you do, you are at much greater risk of being exposed to an STD or HIV than if he doesn’t. In general then, barebacking with a new partner whose status you don’t know in San Francisco carries a much higher risk than the same activity in, say, Boise, if only because the background prevalence of HIV is higher in San Francisco than it is in Boise. Similarly, for young GBT men (as well as young heterosexual women) one of the biggest risk factors is having unprotected sex with older partners. Why? The background prevalence of HIV is higher among older people. Does that mean that we shouldn’t let men from Topeka move to San Francisco? Of course not. Does it mean that we should discourage young men from having partners who are older? Of course not. To take such a stance would be repugnant, and inconsistent with our personal and collective system of values. The stance we have taken is to confront these uncomfortable truths head-on and help men make informed, empowered decisions of their own.

    The research project Michael references is part of the sexual networks approach we have begun to implement. This project focuses on disassortative mixing by self-reported sexual behavior, and not on demographic factors such as race, age, etc. We have had many conversations—both internally and externally—about maintaining an ethically appropriate balance between health and human rights concerns and we are determined to take thoughtful, measured steps to insure that any interventions we implement honor that balance.

    These first steps in this new direction are formative and are helping us understand how sexual networks affect men’s sexual decision-making and explore potential new programmatic ideas. Several months ago we started creating a program development guide, which will clearly articulate our process for the creation of any new interventions, including the ethical concerns Michael airs so passionately.

    Phase One of this research project was to identify venues where self-reported HIV negative men who bareback often and self-reported HIV negative men who rarely or never bareback both meet their partners. In other words, we developed sexual behavioral indicators that focused not on average HIV-risk among patrons within a venue but on the "bimodal HIV-risk" -- where there were men with low HIV risk and men with high HIV risk meeting partners and making sexual choices in the same venue.

    Phase Two involved conducting interviews with men from the venues identified in the first phase to assess factors in the venues themselves that might affect sexual decision making (For example, Two-for-One drink specials that, for some patrons, may lead to excessive drinking). We interviewed over 30 men (including employees of these venues, and other key stakeholders) and were able to solicit ideas from them about programs that would be specifically tailored to those venues. This part of the project allowed us to use qualitative data to help us understand the contextual factors related to sexual decision-making.

    Phase Three, which has just begun, identifies an appropriate program based on the information produced in the first two phases. In this case, “appropriate” includes how effective, ethical, and practical an idea is, how the patrons are likely to respond to it, and an assessment of possible indirect consequences. To date, we have held six focus groups to get input on intervention ideas and are poised to launch an online survey as well.

    We state categorically that we are not focused on separating individuals by age—or separating them at all, for that matter. In trying to understand how men pick their sexual partners we have noted that men often do make selections based on age, which is related to both existing assumptions in the community about age and serostatus, and unfortunately to the ubiquitous ageism that permeates mainstream gay culture’s conflation of youth, beauty, and sexual desirability. These are not dynamics that we are interested in judging, supporting, or manipulating; they are simply findings in our work.

    In point of fact, we have discussed how to facilitate an enhanced sense of community and intergenerational social support by designing interventions that bring men of all ages together. We have found in our interviews that there is great interest in this type of support and we are attempting to be responsive to a clearly articulated community need. We have, and will continue to discuss how to make it easier for younger and older gay men to share their experiences from their generational perspective. Further, we believe that intergenerational dialogue is an important and critical component of a healthy community. We are exploring how to do so in the context of several programs that we are hoping to implement.

    For those unfamiliar with our work, we want to assure you that our process has been, and will continue to be, inherently community-based. We are deeply committed to making sure that all of our programs respect the human rights for which we all have fought so many years. As an agency we pride ourselves on building partnerships and on going beyond “service provision” to empowering and organizing communities.

    We are open to new ideas, intellectual rigor, and robust dialogue. Please feel free to write or call if you don’t understand something we’re doing. Will all of us agree? No – although from the blogs we've read thus far, we probably agree much, much more than we disagree. We can all strive to understand each other, find common areas of collaboration, and find out how we can best work to assure that gay, bi, and trans men can make new HIV infections something to look back on as part of building a healthier community.

    Kyriell M. Noon
    Executive Director
    STOP AIDS Project
    knoon@stopaids.org

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