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Feb. 5, 2014

Robin Lin Miller: Evaluating HIV/AIDS prevention, care and advocacy

Feb. 5, 2014

Robin Lin Miller is a professor of psychology at MSU and former director of evaluation at the New York-based Gay Men's Health Crisis, the world's first provider of HIV/AIDS prevention, care and advocacy. Friday, Feb. 7 is National Black HIV/AIDS Awareness Day.

From the moment I could walk and talk, I planned on having a career in the theatre. I studied acting, music and dance from early on in elementary school through to the completion of my bachelor’s degree at Sarah Lawrence College. But the advent of the AIDS epidemic in New York City put my plans for life on the stage on permanent hold.

No matter where I lived throughout my childhood and adolescence, I spent my summers on Fire Island, a popular summer getaway near New York City. The community in which I lived from age 6 months into my early 30s, the Pines had at first been inhabited by artists and families, but over the course of the 1960s became the east coast’s premiere vacation and weekend spot for the elite of New York’s gay male community.

As a child and teenager, I was witness to and part of the world captured in the lyrics composed by the Village People describing Fire Island: All-night discos and outsized parties; the sun, sand and sea; a place where gay people could be free.

I began to lose neighbors, acquaintances and lifelong friends to AIDS in 1981. It did not take long before our tiny community of fewer than 500 homes held 30 or more memorial services a month for men who had recently died, including those I had known since I was a little girl and those who had given me my first summer jobs as a teenager. I watched young man after young man, many not much older than I was, become ill seemingly overnight and quickly progress to their deaths.

And I watched many of these young men die without the support and care of their families or larger society.

I could not reconcile what I saw happen on Fire Island against the seeming indifference to the epidemic that greeted me each time I stepped off the boat on my return to the mainland. In the United States, HIV affects disenfranchised people disproportionately: people of color; the poor; and sexual minority males.

In Michigan, a black man is about eight times more likely to be HIV infected than a white male. Black teens are the vast majority of Michigan’s adolescent cases, with young black gay men composing roughly 60 percent of newly diagnosed teen cases.

Those early years at Fire Island marked the beginning of my volunteer involvement in AIDS. Ultimately, rather than pursue the theatre, I turned my sights to a research career, one that would combine a social justice orientation with the search for ways to prevent the spread of HIV: I became a community psychologist who specializes in program evaluation.

While a graduate student at New York University, I worked fulltime job as an internal evaluator at the Gay Men’s Health Crisis, or GMHC, in New York City. I worked there during the key historical period in the domestic AIDS epidemic just after the formation of ACT UP and prior to our having much to offer in the way of biomedical treatment for the disease.

We were in uncharted territory in so many ways, with organizations like GMHC, the San Francisco AIDS Foundation and AIDS Project Los Angeles leading the way in prevention, patient advocacy and many other areas.

It was exciting yet often overwhelming as a junior evaluator gaining her sea legs and trying to provide useful information in the face of such a complex and urgent social issue. Was what GMHC doing to help people reduce their exposure to HIV and access care working? Were GMHC clients increasing their use of condoms and, if they were, what aspects of programs helped them to do so? Did GMHC’s efforts benefit all persons affected by HIV equally? Were women’s and men of color’s needs being met? Were the staff able to use scientifically validated approaches to HIV prevention, and if so, did these approaches work in the hands of community providers? My job was to design studies to answer these kinds of questions. And that is what I continue to do.

Though HIV is my substantive focus, evaluation—doing it and researching its theory and practice—provides the foundation for my career. In addition to the fact that I love the intellectual challenge of figuring out how to get useful and credible information in very messy real-world situations, I see evaluation as an essential tool to address issues such as HIV. Evaluation can ensure that the experiences and perspectives of the intended beneficiaries of programs and policies are closely examined.

Without evidence produced through evaluation, many populations in need will be left to the mercy of others’ benevolence. But to meet this goal, evaluation must be done in ways that reflect internationally accepted standards for evaluation practice.

That is why, in addition to conducting evaluations, I also study how closely the real-world practice of evaluation resembles theoretical prescriptions for how it ought to be done and whether HIV-related evaluations meet with accepted professional standards for evaluation quality.

I am a member of the Adolescent Medicine Trials Network for HIV/AIDS Interventions, now in its 13th year of conducting research and evaluations on a broad range of HIV-related issues affecting at-risk adolescents. Through it, my colleagues and I are studying approaches to link newly diagnosed HIV-infected youth to care and to create structural changes to prevent adolescent exposure to HIV in 13 cities around the country.

Closer to home, MSU colleagues and I recently evaluated whether Michigan’s efforts to link HIV-infected ex-offenders to care on release from state and federal prisons were successful. Designing evaluations in this area is extraordinarily complicated, as the studies must surmount many methodological challenges and also be conducted in ways that are respectful of the rights, privacy and needs of these highly vulnerable populations.

A colleague recently suggested that someone ought to design a program of respite care for evaluators who work on emotionally challenging issues such as HIV. It is not for everyone, to be sure. But, every time I meet an 18- or 19-year-old young black gay man who just learned that he is HIV infected or someone living with HIV who is ill and not in medical care, it reinforces for me how critical it is that well-trained evaluators are out there working with policymakers, service providers and communities to navigate from where we are now to a place where young people are at minimal risk of exposure and people who are living with HIV can do so in health and with dignity.