Blood, Semen, & Tears

35 years of the Pitt Men's Study

The letters are about everyday life. The writers talk about plans for upcoming meetings and weekend parties. They worry about the upcoming election and whether the current conservative regime could continue for a second term. They crack inside jokes and gossip about the small world of gay Pittsburgh in the early 80s.

These letters are from the dying, part of the archives of the Pitt Men’s Study (PMS), which has been researching the natural history of HIV/AIDS for the past 35 years. And so the invitee to that party considers staying home, fearful of appearing in public with his ravaged complexion. And a memo from a colleague is followed by an obituary: he’s succumbed to the very disease he built his career on fighting.

Crammed in full-to-bursting folders on the fourth floor of the PMS’s Oakland office building, the letters are a small but poignant part of the study’s rich and ongoing history. Beginning in 1984, the Pitt Men’s Study part of the Department of Infectious Diseases and Microbiology in the Graduate School of Public Health of the University of Pittsburgh, has followed approximately 3,000 men to gather information on the disease. Volunteers attend twice-yearly appointments where they answer detailed behavioral questionnaires and have their blood drawn amongst a battery of other tests.

“The study’s longevity is due to the incredible response from the community to one of the major health crises of our time,” says PMS clinic coordinator William Buchanan. “None of it would have been possible without the volunteers.”

Those letters help to explain their commitment. Many of those involved in the study’s early days didn’t survive the years before the development of protein inhibitor drugs, when contracting HIV was akin to a death sentence. In those fearful days, faced with a government that was ignorant if not negligent, people had to take their health in their own hands. In the face of stigma and indifference, the Pitt Men’s Study was a place that advocated for them and took their lives seriously. It was a source of information and of hope.

The origin of the study can be traced to 1982, when a straight University of Pittsburgh researcher Dr. Charles Rinaldo met with a young gay medical student named David Lyter to discuss the opportunistic infections that were killing gay and bisexual men. From this came the Pilot Study, which formed the basis for a 1983 National Institutes of Health grant application that created the Pitt Men’s Study, part of the national Multicenter AIDS Cohort Study (MACS) with additional sites in Los Angeles, Chicago and Baltimore.

Key to the early success of the study was community involvement. Lyter did most of the recruiting early on, and others were soon brought into the fold.

“I had a background in community organizing and one of the principles I learned was that I couldn’t do it – that the recruitment would have to be done by the community,” says co investigator Dr. Anthony Silvestre, who began working for the PMS in 1984. Silvestre led the initiative to start the Community Advisory Board (CAB), a diverse group of who helped the study to respond to the needs of the community and shape its recruitment efforts. The study’s alliance with The Tavern Guild, a group of gay bar and bathhouse owners, was instrumental in spreading awareness and support for the research. Researchers hit the bars, picnics and anywhere else they could to find men who would volunteer their time, blood, semen and more in an effort to gain knowledge about the still-nascent epidemic.

In its three-plus decades, the study has helped researchers to understand exactly how the virus is spread. It helped to map the epidemic’s size, particularly in gay and bisexual communities, and revealed that some had a genetic resistance to the virus.

“I believe the work of the PMS and CAB helped tremendously to prevent Pittsburgh’s epidemic from growing to the same extent as that of other major cities,” Dr. Lyter says. “Seeing what was happening to men in larger cities throughout the country and world was a great motivation for guys from the ‘burgh to avail themselves of the resources the PMS had to offer.”

As the years have gone by and the data have amassed (both numerical and physical as the study maintains stores of frozen blood from the early 1980s onward), the focus of the research shifted, largely due to medications that, for many, changed HIV from a death sentence to a manageable disease.

“The study continues to do the really groundbreaking work that it has always done in studying the natural history of HIV infection in gay and bisexual men, but it is continuing to break new ground by looking at gay and bisexual men as they age, which no study has done before.”

These days, researchers are studying agingrelated diseases like diabetes and heart disease and trying to determine what role HIV plays in those diseases. They are examining issues around new HIV prevention methods like PrEP in a population of gay and bisexual men over time, issues Friedman lays out thusly: “How long do they stay on PrEP? Do they stop PrEP and restart it? Does their PrEP use align with their sexual risk?” Then there are the financial, social and emotional issues that come with a disease that is newly diagnosed in nearly forty thousand Americans each year.

“One of the things we’re looking at is how people endure and cope with stigma, particularly intersectional stigma,” Friedman says. “How does HIV affect the lives of black gay and bisexual men? People who are multiply marginalized, for instance – how do people endure and cope with discrimination, and how can we best fight stigma? Approaches in medical settings, for example – how do we create welcoming environments when people walk in the door?” To this end, the study is gearing up to do additional recruitment primarily with black and African American gay and bisexual men.

“We know that these communities are severely impacted by HIV,” Friedman says. “There are serious health inequities by race in HIV infection and HIV outcomes and we’re hoping to work with the African American community in Pittsburgh to find ways to develop solutions to those inequities.”

Also, beginning this year, the MACS will be increasingly collaborating with the Women’s Interagency HIV Study (WIHS), which started in 1993 to look at the impact of HIV on women. By combining a men’s and a women’s HIV study, researchers have the opportunity to see if there are gender differences in things like cardiovascular risk and mental health in the context of HIV.

But even with these new lines of inquiry, there’s the question of what keeps the study’s volunteers coming back. Some of those men have been volunteering for the study’s entire 35-year history, showing up (not to mention finding parking) in Oakland every six months to submit to testing for an hour or more.

“They come back because they know they are pioneers,” Friedman says. “Their contribution to this research has made it the longest study of gay and bisexual men’s health in the world. People have given their blood, sweat, and tears, sometimes literally, to enable researchers to understand HIV much more deeply and more quickly than they would’ve been able to otherwise.”

Natty Soltesz has worked in public health for the last ten years. More interestingly, he's a writer of gay erotic fiction whose first two story collections were Lambda Literary Award finalists. Check out his work at nattysoltesz.com.