The Pitt Men's Study, Forty Years Strong

[Intro Music Starts Playing] [00:00:04] Tony: Hello and welcome back to another episode of Microbe Matters, presented by IDPITTStop, where we discuss, dissect, and demystify topics in Infectious Diseases with our experts here at UPMC and the University of Pittsburgh. I’m your host, Tony Morrison, media specialist here at Pitt ID and I’m just as curious as you may be about navigating through a world full of microscopic organisms. Please join us as we examine both the dangerous and beneficial microbial microcosms that surround us, promote public health, and showcase research and treatment of modern infectious diseases. [Fade out Intro Music] [Fade in Inquisitive Music] 00:00:51:17 Tony: In a Pittsburgh hospital in the early 1980s, a young man lay gravely ill, his body succumbing to a mysterious virus that medicine could neither name nor contain. He was one of many young men, previously healthy and vibrant, who had begun arriving in hospitals across the country with rare infections typically reserved for those with severely compromised immune systems. Doctors saw the devastation, but not the cause—only the unadulterated terror that followed in its wake. [00:01:27] Tony: Among the few who noticed the troubling pattern was Dr. Charles Rinaldo, a virologist newly settled at the University of Pittsburgh. He observed how men in their prime were struck by infections they shouldn’t be vulnerable to, infections with names as unyielding as the disease’s grip. The community whispered of a “gay cancer” as fear spread through bars, social groups, and intimate circles, turning whispers into shouts of panic. [Fade out Inquisitive Music] [ Fade In Uplifting Music] [00:01:56] Tony: Then, on April 1, 1984, the Pitt Men’s Study opened its doors. ‘This was the beginning of something essential,’ Rinaldo would later reflect—a place where mystery met science, where people could find support amid chaos, where Pittsburgh’s community came together in a fight that would become a lifelong mission. Forty years later, the Pitt Men’s Study remains one of the longest-running HIV/AIDS studies in the nation, connecting research with resilience and data with dignity. [Fade out Uplifting Music] [00:02:33] Tony: Dr. Rinaldo, co-founder of the Pitt Men’s Study, joins us today to recount those early days and to reflect on the study’s legacy. We’ll talk about how this study came to be, the challenges he and his team faced, and what the Pitt Men’s Study means to him now, four decades later. Thank you so much for joining us on today's show to discuss the legacy of one of Pitt's longest lived achievements. [00:03:00] Dr. Rinaldo: Glad to do it. Thank you. [00:03:02] Tony: To give us some invaluable insight into what it's like to work in the Pitt Men’s Study on a day to day basis, I've invited Nathaniel Soltesz, who is the clinical research coordinator for the Pitt Men’s Study. Hello, Nathaniel. Hi, Tony. Thanks, Nathaniel, for joining us today. [00:03:18] Nathaniel: Glad to be here. [00:03:19] Tony: And also joining us Today is one of the study's longest living participants. Jeffrey, thank you so much for joining the show and getting a little bit vulnerable with us today. [00:03:30] Jeffrey: I'm glad to be here. [00:03:31] Tony: So let's go all the way back to the beginning. Dr. Ronaldo, can you take us back to the early days of the Pitt Men’s Study? What inspired the creation of the study and what challenges did you encounter in the very beginning? [00:03:45] Dr. Rinaldo: When I saw the first CDC report that described this unusual infectious disease like outcome, a very severe outcome in a particular population of homosexual or gay men. At the time, it caught my eye as a young scientist that was working on a virus called cytomegalovirus (CMV), mainly in transplant recipients here at the University of Pittsburgh Medical Center, and noticing the obvious comparisons between what we were seeing in organ transplant recipients and to these individuals who were cited by the CDC as having this, what appeared to be a new syndrome, quite deadly syndrome. And in particular, I think there were five references given in that initial CDC report, two of which were papers I had published as a postdoctoral fellow just a couple years before that. And so it was of particular interest to me as a scientist and investigator, but knowing nothing beyond that from a science viewpoint, but not from a viewpoint of who these people were, what was special about them, as to why these men in particular had this syndrome, which resulted in their death at a very young age. And it was quite unusual finding. [00:05:10] Tony: Throughout its history, the Pitt Men’s Study has made substantial contributions to public health. What were some of the most groundbreaking findings from the study? How did these discoveries help shape HIV research and public health policy over time? [00:05:25] Dr. Rinaldo: Well, I was fortunate to receive a grant from the NIH in 1983 which allowed me to study this. And in particular, we banded together three other sites, including Pittsburgh with myself, Los Angeles, Chicago region, and Baltimore, Washington, D.C. region. So in 83, we formed a combined cohort study of these four sites, including Pittsburgh. We were required really to study the natural history of this phenomenon, this syndrome. And remember, we did not know what was causing it at the time. So one of the initial things we were to do was to help to find out what was the organism, organisms and how that was causing this deadly syndrome. The most important thing we did was in the mid-1990s we were able to use a new testing at the time called polymerase chain reaction PCR, which was able to detect the nucleic acid of the virus. In this case, we knew by then it was a human retrovirus. And we discovered that with this new test we could derive from that what risk they had Their relative risk of developing what we called full blown AIDS as a result of this virus infection and how long they could survive that once they had the fully developed syndrome. And this is a huge breakthrough at the time and still is used in laboratories across the world to diagnose HIV infection. And what we found was that a certain level of virus in their blood, by detecting that level, you could predict fairly well statistically that they would develop AIDS either very quickly, like within a year or two of being infected, or may take 10 years or more to develop full blown HIV infection. And that was with very little treatment available at the time. We were able to tell what these drugs were able to do, these new drugs, in terms of slowing down or stopping the progression of HIV infection and preventing the development of AIDS. By examining these specimens, we were able to learn a lot about the natural history of this virus infection, which is, we feel a great contribution to our ability to control this virus with different drug treatments now, hopefully leading to a vaccine for preventing this development of AIDS or even preventing the infection in the first place. [00:08:13] Tony: The Pitt Men’s Study started as part of a multi-center collaboration and it has since evolved to include a diverse group of participants. How has the study changed over the years to reflect this evolution in research and participant demographics? [00:08:27] Dr. Rinaldo: We have several thousand controls. Okay, men and women. Now we're part, I should state as well, of a combined cohort study where we've combined with the woman's version of the natural history study that came about 10 years after our men's version of it in the early 80s, by the early 90s, there was a long overdue female version, women with HIV infection and what their natural history was and how it differed from men. And so now we're one combined group of that and really we're able to study these areas in depth right now. But the major part that I haven't mentioned is we have people without HIV, men and women who serve as controls. Very few studies have that control group thing. And it's something that needs to be emphasized. [00:09:20] Nathaniel: Yeah, it's. The National Institutes of Health funds us right before the pandemic, they asked us to merge the multicenter AIDS cohort study, of which there were four sites, and we were one of them, with the women's Interagency Health Study. I think it's called the WISE study. This is the women's arm of this large cohort study. So we merged studies and then the pandemic happened. So, like, that is still something we're doing a lot of catch up on as far as, like, merging these two sections of the study, There's a lot of sub studies going on, a lot of information that we're collecting, because now. [00:09:58] Jeffrey: That we're part of a woman's study, you know, I'm learning more about HIV in women now. It's kind of interesting. Some of the things that the two studies, men and women together, they're finding out in expanding upon, it's very different. You see these swings. I mean, now that we have that data for the women available to us too, it's kind of interesting seeing how they match up against each other, you know, depending on what they're looking at. [00:10:23] Tony: The Pitt Men’s Study has always been closely connected with the LGBTQ community. How did the study engage with this community? And especially during the difficult early years of the HIV epidemic? [00:10:37] Dr. Rinaldo: Again, we didn’t have the large numbers of LGBTQ people in our area, our tri-state area, but we were able to engage them and enroll the men and with the support of the women as well, and through their different groups that they had, ranging from Tavern Guild group, which was critically important. This is a group of owners of gay and lesbian bars in the Pittsburgh area. And they were really afraid, and rightfully so at the time, with losing their businesses. People, men and women, who would normally go for entertainment to these bars, would not do that because they'd be afraid of picking up whatever this agent was just by what we call casual contact. And so they were extremely important for us to go into their bars and put up posters and so forth, that we would be there with our crew to explain this to them and to hopefully recruit them into our study. Right there in the bar, we would take the blood, you know, go to the pool table, put their arms across the pool table and stick them with needles and take their blood. And so that was really a huge support mechanism to. To pull our study together. Let me say one of the most important decisions I made was recruiting a young gentleman from Philadelphia at the time where he was residing, and recruiting him to Pittsburgh. And that was Anthony Silvestri- Tony Silvestri. As a gay male and an activist at the time, Tony knew what to do and how to do it. They really loved Tony and trusted in him. Tony said, it isn't just one community, you know, It's a variety of different people with different approaches to their lives, their personal lives. Some are completely closeted, and they were then. And to keep their sexual identities secret, if you will. Others were very out, as we say at the time. So, Tony knew all this and he formulated plans to recruit different people from these different sections of that society with different approaches. But here we were, physicians and PhDs and scientists, and we had to meld with that community and to get their trust. And without that, we wouldn't have a study. [00:12:56] Jeffrey: To this day, I kind of already knew a lot of the people, too, and they would start doing some little groups where they, you know, sit down with other people who are HIV positive and talk out what you want to do. So that part of the community was helpful as I learned how to deal with being positive. Because honestly, even if they told me, it was like, no, not me, you know, and I think I was more in denial, which is why I didn't start meds so late. So. But once doing that, I started listening to other people in the other groups that were coming on. And the Pitt Men’s Study also reached out to the bars, to sports organizations, several of which I belonged through the years. And we would run into each other at the clinic or whenever they would come to the ball field or the gym where we might be playing volleyball or whatever and do sign ups. The sense of community just expanded more from just like a, oh, there's my softball friends, and oh, here they are at the education. Because this was before the Internet. [00:13:59] Tony: Beyond collecting data, how does the study help participants in terms of health interventions, education, or community outreach? [00:14:07] Nathaniel: Certainly when the study began, it was a really important place for people to get information about what was going on. You know, just as the AIDS crisis was emerging. It provided a kind of information hub for people about where to enroll in drug trials, for instance. I think a lot of people got hooked up through HIV med trials through the Pitt Men’s Study, and, you know, certainly referrals. We have a list of doctors that we refer people to who are, you know, well versed in treating people with HIV. So, we provide those for people. [00:14:47] Jeffrey: Well, the one good thing, the Pitt Men’s Study would have occasional, like, educational classes that they would have open to you to come and listen to them talk about, like, the new medications that were coming out, or people had questions like, well, why are we giving all this blood? What do you do with it? And they would have people come and explain all that. And that's how I learned more. You know, you had your choice of going, and I hope everybody does go, and you learn a lot about what's going on with the study. Well, instead of answering all these individual questions, educational seminar. And that was nice because then you can ask the people who are running the study who know what's going on Directly, I don't see anywhere else where you can actually talk to, like, Dr. Rinaldo, who's very renowned in the field. You don't see that. [00:15:33] Tony: How do you feel about the public perception around HIV and AIDS and how it's evolved and what role has the Pitt Men’s Study played in combating stigma surrounding it? [00:15:44] Jeffrey: HIV, I think, caused our community to separate from itself too, a little bit, because some people were very judgmental back then. Even now, I see words like in people's online profiles saying, I'm clean. You must be clean, too. And it's like, I'm not dirty. We're not dirty. You know, it happened. But I hate that phrasing. And even back then, people were stigmatizing our own members. It's like, oh, he looks sick. I don't want to get too close to him. Again, that was in the early days. Still don't know how it was transmitted. And, yeah, our community versus the rest of the world, even though you still get that look, if you tell somebody, hey, I'm positive, you know, they just get this look. And, you know, it's like, whoops, maybe I shouldn't have said anything. But as far as the public perception, they're more aware of it now, definitely, but they're still lacking the education, too. I wouldn't be, not one bit surprised. You've run against somebody who still thinks you can get it from mosquito bites, honestly, with the medications once a day. Whereas my friend who's long gone, he was taken like six AZTs three times a day or something like that. And, you know, that's the way the pills have gone over the years. [00:17:03] Jeffrey: And now they're doing injections. Things are changing right now. [00:17:07] Nathaniel: And some of the things we've been doing lately that I find pretty interesting. There's a stigma study that we're doing right now that's looking at, you know, how racial stigma, stigma around sexuality, et cetera, affects people's health outcomes. I think that's really important to look at. [00:17:23] Tony: Over the decades, the research focus has shifted a bit with advances in HIV treatment, like antiretroviral therapy, for example. How has the Pitt Men’s study evolved alongside of these advancements? And what new questions are you hoping to explore in the future? [00:17:40] Nathaniel: Just overall, it's worth noting that this is the longest running study of gay and bisexual men's health in the world. So, it's just this kind of insanely useful repository of data that is like nothing else that researchers can kind of do whatever they want with. And there's so much to draw from because we analyze so many aspects of the disease, and right now it's more focused on aging. [00:18:07] Dr. Rinaldo: When the first drugs, AZTs and stuff, were of some benefit, but quite limited then in the 1990s, when the better drugs came. And of course, now these are a miracle, really, of science that we have these antiviral drugs that can hold this virus in check. They can't cure you, but they can hold it in check at first. Well, maybe they don't even need to do our study anymore. Natural history is settled here. You're going to take these drugs and, you know, we'll work it out. Maybe they'll find a vaccine. But we realized quickly that was not the case and that what we called it then was the new natural history or the evolving natural history of HIV infection is what these drugs represented then and still today, and all aspects of them, the side effects, whether they really work, drug resistance, develops into one or the other, we can still contribute to addressing those questions. And so we're still contributing to that science by looking at the effects of these different drugs as one of the variables in the infection. Now, the drug treatment is an extremely important variable. And the types of drugs that people are taking, because they do differ among the men and women, and then all the underlying conditions, race, for example, age, all these can have effects on the applicability and usefulness and success of these drugs. [00:19:30] Tony: Looking ahead, what role do you see the Pitt Men’s Study playing in the future of HIV research? What do you hope will be its legacy in another 40 or even 50 years? [00:19:40] Nathaniel: So, this mental health study we're doing is really interesting. It's these long interviews that ask people about pretty much the entirety of their lifetime mental health. Anything bad that's ever happened to you, like we bring up in these interviews, it could be kind of intense for participants, but it's just so interesting, and I'm excited to see how they extrapolate that data and kind of turned it into papers and research, because I think it could be really useful, not just in HIV research, but just in general. [00:20:09] Dr. Rinaldo: That takes a lot of insight and guesswork as well. It could all end, for the most part, overnight. If we had a really preventative vaccine. This virus infection, however, it will be with us forever in one form or another, even with a vaccine. But that would have profound effect. And in fact, I say this every year in World AIDS Day. I say, I'd like to not have to do this every year and give, you know, let's all work together, and we thank you all and let's keep at it. And we'd like to put this to rest. Can it be as good as what we've done in past years for smallpox or for polio? I don't know. But that would be the ideal goal here. And so hopefully people will look back on especially the legacy of the LGBTQ community in their volunteerism. And yes, they were fearful in many cases, it was self-accommodating to get involved with this to a certain extent. But overall, they didn't have to do this. And without them, and that's something I say over and over, we could not have done and still do this natural history study. You ask what it's become. In one respect, it's become an effective aging. As you know, we have men in their 70sstill quite alive and active in our study after 40 years, okay. And it's amazing. And they come in once, twice a year to our clinic even now as they become older and more subject to chronic diseases and disorders that we're all affected by as we age. And we're studying that group intensely because there are differences between those that even though they're treated for HIV, they still have differences in their aging. So, we're studying all those to date, and I think that'll be a major emphasis of where we go for the next several years. And so, we will serve a very important category of research in that respect. Unfortunately, men and women are still becoming infected with HIV. Much lower rate than it used to be. Much, much lower. So that's good. But still there are some that become infected and we're recruiting them into our study. There's a lot of science to be done. And again, we can't do it without these volunteers. [00:22:25] Jeffrey: Well, for the new participants and any new ones that we might recruit in the future, because currently we're not. But I see us having to, because the older part of the study, unfortunately, is getting older. They can't come in as much as they used to. But for the newer participants and those that we may recruit in the future, it's a good study. You learn a lot about yourself. You contribute to the community, contribute to the world or throughout the United States. We were just four or five places at one time. Now there's 13, 14 of us, from east coast to west coast, down to the South. So, your contribution is going to help make things better in the future. I know some people feel that we've gotten away from looking for a cure, and that's not really true. We've become a longitudinal study because we're learning how people are living longer on medications and that's working towards a cure. Still, it really is. People don't understand that someday they might find something in your blood that might be the cure. [00:23:26] Tony: It's clear that this study has had a profound impact on both the scientific community and the people it serves over the last four decades. And as it continues to shape the future of HIV research, it stands ready to serve and uplift the community for another 40 years and beyond. [00:23:43] Tony: Thank you so much, Dr. Rinaldo, for sharing the story of the Pitt Men’s Study with us today. It has been an honor. [00:23:49] Dr. Rinaldo: Thank you. I've been glad to do it and I hope it does some good as far as slowing down this pandemic in any way we can. [00:23:56] Tony: Nathaniel, thank you so much for your time and coming on the show today. [00:24:00] Nathaniel: Thanks, Tony. [00:24:01] Tony: Thank you so much again, Jeffrey, for all of those deeply personal insights. [00:24:05] Jeffrey: All right, thanks. [00:24:06] Tony: The Pitt Men’s Study stands as both a scientific pillar and a community lifeline in the ongoing journey to understand and combat HIV. Its legacy is a testament to the power of research grounded in humility and resilience. And as we look ahead to future episodes, we'll continue to highlight the critical voices and research driving progress across the field of infectious diseases. [00:24:32] Join us next time on Microbe Matters, where we dive into more innovative work bringing research from the bench to the bedside and beyond. [00:24:46] Thanks for listening. If you enjoyed today's topic, please rate, write a review and be sure to subscribe to the show wherever you listen to podcasts, so you never miss an episode. Want to keep up with the latest ID pitstop news? Follow us on social media at IDPittStop, where you can view behind the scenes content, discover more of our research, and be the first to know about upcoming projects. [End]