As they have for more than three decades, the Pitt Men’s Study leaders gathered with about four dozen men and women. They remembered those who have died and gave thanks for the 1,743 men who have participated in the nation’s longest-running HIV/AIDS research project.
World AIDS Day observance at the Heinz Memorial Chapel—an event sponsored by the Pitt Men’s Study
Charles Rinaldo, a Ph.D. scientist who has led the effort since the virus surfaced here in 1981, walked solemnly down the center aisle with a group of clergy.
“So here we are again to honor our participants,” the soft-spoken Rinaldo said, welcoming the sparse group. “For 35 years now, you have supported our study for HIV/AIDS. … We can’t thank you enough. Without you, there is no study.”
Every six months, year after year, participants have trekked to Oakland to offer blood and bodily fluids. Their alms have become the foundation of hundreds of research projects.
The Pitt study, conducted in the halls of the university where Jonas Salk developed the world’s first polio vaccine, began before the affliction that has killed an estimated 32 million people worldwide even had a name: human immunodeficiency virus. Or simply, HIV.
Neither the virus nor its final, deadly stage — acquired immunodeficiency syndrome, or AIDS — dominates the news and national fears as they did decades ago. Yet around the world, about 38 million people remain infected. Many are living longer lives thanks to lifesaving, though expensive, medical treatments. But there is no cure — yet.
Worldwide, an estimated 1.7 million people became infected with HIV last year. Another 770,000 died from AIDS-related illnesses.
In the United States, just more than 1 million people are believed to be living with HIV. Although the number of new infections has declined dramatically, nearly 40,000 in the U.S. still contract HIV every year. And about 16,000 people died from AIDS in the United States in 2016.
Because of that, work on the Pitt Men’s Study continues.
Rabbi James Gibson stood before a small, quiet congregation in Heinz Chapel Wednesday night with a dedication. “We remember our friends, lovers and spouses,” he said. “Our mothers, fathers, brothers and sisters, daughters and sons lost to HIV and AIDS.” He gave the room permission to rise. “Please come forward and place the names of those for whom you are still aching on the Circle of Love,” he said.
Nearly everyone in the room came forward. They waited in line to reach the front of the chapel and place a sticker on a large white cardboard circle that read “Circle of Love.” Each sticker held a name of a friend or relative who had been lost to AIDS. Some had four or five.
More than 60 attended the commemoration service, sponsored by the Pitt Men’s Study in honor of the 31st annual World AIDS Day. Nearly 40 years after the start of the AIDS crisis, mourners and survivors gathered in memory of those lost to the disease.
The first AIDS patients appeared in New York and California in the early 1980s. Young gay men showed up at doctors’ offices with rare forms of cancer and pneumonia. Slowly, doctors came to the realization that the patients’ immune systems had been compromised by an unknown virus.
Cases began to emerge across the country, including Pittsburgh. Doctors soon knew enough to recognize the symptoms, but there was no name for the disease.
Later, scientists discovered human immunodeficiency virus, or HIV, was at the root, attacking the immune system’s T-cells and making the patient extremely susceptible to other types of disease and infection. They put a name to autoimmune deficiency syndrome, or AIDS, the third stage of the virus, when HIV has devastated the immune system.
The Pitt Men’s Study is an investigation into HIV/AIDS that has received funding from the National Institutes of Health since 1984. Its principal investigator is founder Dr. Charles Rinaldo, who chairs the department of infectious diseases and microbiology at Pitt’s School of Public Health. Rinaldo gave a short account of the beginnings of the study, thanking those who had made it possible.
Among those who made it possible were a doctor who identifies as gay and worked on the study as a medical student, and the owners of the Pittsburgh gay bars who allowed Rinaldo and his colleagues to advertise their study.
He also thanked Dr. Jerry Rabinowitz, a victim of last month’s shooting at the Tree of Life Synagogue. In the days following the shooting, many remembered Rabinowitz for his treatment of Pittsburgh HIV/AIDS patients in a time when compassionate care was difficult to come by.
“Back in the 1980s, we referred many of our men to his practice,” Rinaldo said.
Rinaldo said he and Bill Buchanan, the clinic coordinator for the Pitt Men’s Study, wrote an obituary for Rabinowitz to appear this December in AIDS, a scientific journal focused on HIV/AIDS.
Above all, Rinaldo thanked study participants. “It was 1982, at the beginning of the epidemic, when fear of AIDS was rampant, when 60 gay men in Pittsburgh answered our hand-drawn recruitment posters,” Rinaldo said. “These 60 men in our pilot study knew we had no treatment or care. They knew we had no magical elixir. Without those 60 men, there would be no Pitt Men’s Study.”
1,736 men have enrolled in the study since 1982, according to Rinaldo. Out of these, 465 have died, most due to complications from AIDS. And although AIDS is no longer a death sentence, there is no cure and the Pitt Men’s Study continues to investigate HIV/AIDS.
Sean DeYoung represented Allies for Health + Wellbeing, the HIV testing location and health center, of which he is CEO. During the service, which was themed “The Changing Face of AIDS,” he spoke about the group’s 2017 decision to change its name from the Pittsburgh AIDS Task Force. “The community let us know that the word ‘AIDS’ was too stigmatized,” DeYoung said. “And we weren’t a task force anymore.”
Allies’ mission has expanded since its 1985 beginnings. Then, it existed to provide support and information to the infected in the Pittsburgh area. Now, it offers HIV testing, health care for transgender people and access to PrEP, one of the most reliable methods of HIV prevention.
At the end of the service, some attendees traveled across the street to the basement of the Community of Reconciliation Church, where they caught up with one another at a small reception. For some, like partners Robert Flaherty and Robert Maxin from Emsworth, the service is an annual occurrence. “My partner was part of the original Pitt Men’s Study,” Maxin said. Now, he and Flaherty attend the event nearly every year. Both are HIV positive and both had names to add to the Circle of Love. “I put two up, but I could have easily put up 12 or 15,” Flaherty said
The Pitt Men’s Study extends its heartfelt sympathy and condolences to all those touched by the shooting at the Tree of Life Synagogue in Squirrel Hill on October 27. While all the deaths that day were tragic, the death of Dr. Jerry Rabinowitz is particularly significant to our volunteers and staff. Dr. Rabinowitz was one of the first doctors in Pittsburgh to welcome both gay men and people with HIV into his practice, a safe space and source of compassionate and accepting care for many of our volunteers for three decades. Long-time staffer Bill Buchanan remembers, “Every time volunteers completed releases to send their results to Dr. Rabinowitz – and that happened a lot – they would express their deep respect and admiration for him. I never heard a bad word about him from anybody in thirty years.” Jerry Rabinowitz was a pillar of the community, and he will be sorely missed. Donations can be made in his memory to Dor Hadash, 5898 Wilkins Avenue, Pittsburgh, PA 15217.
The Pitt Men’s Study (PMS) is a confidential research study of the natural history of HIV/AIDS, funded by the National Institutes of Health that has been ongoing in Pittsburgh since 1984. The Study is part of the Department of Infectious Diseases and Microbiology in the Graduate School of Public Health, University of Pittsburgh. The study followed a cohort of approximately 3000 men to gather information on the epidemiology, virology, immunology, and pathology of HIV and is part of the Multicenter AIDS Cohort Study (MACS) with sites in Los Angeles, Chicago, Baltimore as well as Pittsburgh.
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