 Hey everyone, my name is Rajeev Dharazi and in this video, I'm excited to interview our very special guest, Jeff Taylor, to discuss HIV and aging. What are the things we, as people living with HIV, should be aware of? What is the impact of chronic inflammation on the body? Are there increased risk factors? Increased comorbidities as we age with HIV? A lot of long-term survivors, those have been living with HIV for over 25 years, are now facing these questions and more as they age. And much of the conversation and science research is focusing more and more on this topic, rightfully so. In addition, we'll also touch on some HIV cure-related topics. But first, I'll start by introducing our esteemed guest, Jeff Taylor. Jeff Taylor is a long-term survivor who has been active in HIV research advocacy since enrolling in the first AZT trials in the late 80s. He is currently the executive director of the HIV plus aging research project, Palm Springs, which conducts patient-centered community-based research on aging and HIV in California's Coachella Valley. Jeff has served on the Community Scientific Subcommittee of the AIDS Clinical Trials Group and as a community representative to the National Cancer Institute's AIDS Malignancy Consortium, where he was part of the HPV Working Group and the Anchor Study. He previously served on the Department of Health and Human Services Antiretroviral Guidelines Panel. Jeff is currently on community advisory boards for the UCSF Gladstone Amphar Cure Institute and the UCSF Dare Collaboratory for HIV Cure Research. He's also on the AIDS Treatment Activists Coalition's Drug Development Committee, which meets regularly with pharmaceutical and food and drug administration on HIV drug development issues. He was also recently appointed to PACHA, the President's Advisory Council on HIV AIDS. Well, I don't know if there's much else there left for you to do. And that's a long list, but welcome, Jeff. I'm so glad to have you on. Thank you, Ray. It's great to be here with you today. Yeah, it's been a while in the making and we're doing it. So here we are. And I'll start by asking a very broad question that I asked a lot of my guests, which is what is your view on the current state of the global HIV AIDS epidemic? Well, I think, you know, as everybody is quick to point out, we've made a lot of progress in 40 years, right? It went from an unknown disease to kind of a long desert of 15 years where we didn't have any treatment and everybody was dying. But then we did get treatment thanks to a lot of, you know, research and a lot of activism in those early years. And now we're in a pretty good place. People are living what they like to call normal life spans. We can't stop the epidemic if we had the political will, which means devoting money to it. You know, we've got the drugs, you equals you, we could stop transmission immediately. So all the pieces are there. It just requires political will and advocacy to make that happen. And as you know, that's an uphill battle. There's a lot of things, a lot of stigma, other things that get in the way of that. So it's both promising and frustrating to find ourselves in this place to realize we could stop the epidemic but aren't doing it. So there's a lot of work to be done and you well know. Yeah, and in the meantime, the, a lot of the concern is on living with it now in the moment. And so a lot of people have questions about that and I get more and more over time pressing questions about, you know, aging with HIV. But before we jump into those hot button questions, I'd like to ask a little bit more about you personally, like when were you diagnosed with HIV? Sure. So, you know, when I got HIV, when I got diagnosed or kind of two different things, as you know, in the early years of the pandemic, there was no chance until 1985. I learned in probably 1982 or 83 that I had been exposed to people that I dated the year before, both turned up positive and I realized that I probably was as well. But there was a first no test and then when there was, there wasn't a lot of point in getting it because it really was considered a death sentence at the time. So I waited until treatment became, well, not available to everybody, but there was treatment out there. So there was some hope. And I had something to focus on once I did get that diagnosis. At the time I got diagnosed, I was living in Chicago. As you know, there was a lot of fear and stigma around the disease, people were losing their jobs, getting kicked out of their apartments, shunned by families and friends. It was a really, really horrible time, which is why people did not get tested. But when I did, what prompted me to get tested was a routine visit to my dentist's office. And this was back in the days before rubber gloves and universal crystal precautions. And she was poking around in my mouth with, you know, finger, with her bare fingers and I could taste the soap on her fingers. And then she, you know, saw something and she said, excuse me, I'll be back in a few minutes. She left the room, comes back a few minutes later, dressed from head to toe in a white biohazard containment suit, complete with a classic face shield, and said, I don't mean to alarm you, but I noticed that on your tongue you've got a growth called oral heriolucoplegia, and this can be a sign of a reduced immune system. So I suggest you go see your doctor and think about getting tested for HIV. So that was kind of my wake-up call. I knew that I was probably positive, but, you know, this was a symptom. I'd already been having some fatigue. So that's what prompted me to finally go and get the test, as they called it then. And because of all the fear and stigma, people were going to anonymous county testing sites. So that's where I went. And they had this very elaborate process where they sit you down with a counselor, ask you why you're there today. What would you do if you found that you were positive? And then they asked a really interesting question. They said, would you kill yourself? Point blank, asked me if I would kill myself if the result was positive. So I found myself in a very strange position of having to convince this person that no, I wouldn't kill myself, please give me the test. So they go ahead, they draw the blood. Back then it took two weeks to get the results, which is a long time to wait. And then when you go back, it was the same thing. You sit down with the counselor, they ask you the same questions, including would you kill yourself if the results were positive? Because that was happening then. Again, I convinced them that I wouldn't. And they said, well, I'm really sorry to have to tell you this, but you have HIV, the virus that causes AIDS. We think you have about two years to live, we suggest you go home and start making arrangements. So when you say death sentence, that's what they meant. They were very serious about that. And not without reason, right? Most people were dying and the focus was getting people into care and palliative care. There was no treatment then to help people die with dignity. It was really the focus of the community back then. But I had kind of a paradoxical response. I went across the street and bought a lifetime membership at a gym. Thinking I'm gonna be around for a while, I'm gonna do something about it and try to address the wasting. That was one of the hallmarks of the disease back then. You would see people who looked like concentration camp victims. So I started working out, doing protein shakes and then really trying to take care of myself and not become that person. So fast forward a few years, I had been living in Chicago at the time and well, I should back up and say that the second thing I did after joining a gym was go to Northwestern University there in Chicago, which was one of the sites for the AIDS Clinical Trials Group, which by then we're doing AIDS treatment research and looking at ACT. And this was 1988, so that was the only thing out there. But it was only available to those who had what they were calling full-blown AIDS. So somebody who had PCP pneumonia or the chaos cancer that was popping up all over people when they got diagnosed. But if you didn't have those two things, you couldn't get access to the drugs, except if you volunteered for a clinical trial. So that's what I did. And the first trial I signed up for, I luckily got the placebo because back then they were giving ACT at really high doses really often and it was making people sick and even killing people with the anemia. So I kind of lucked out on that one. Didn't have to endure that. And they opened a second study and I got on the active treatment arm. And it slowed things down. As we know, one drug at a time doesn't work. Basically what they were doing then was sequential monotherapy, which is a proven route to drug resistance. And as a result, I just went to one study after the other, one drug after the other, trying to basically buy myself some time in a bid to stay alive. And people think, oh, how wonderful that you joined research studies. People were doing this out of self-interest. They would lie to get into studies. People were giving their study drugs to people they thought needed it more. These were really desperate times and people were resorting to desperate measures. So as I mentioned, I left Chicago one more winter. There probably would have killed me and moved to sunny San Diego, which I chose because it had one of the top ACDG research sites in the country. I thought I wanna be where the best researchers are, where they have the most trials and nice weather. So that took me to San Diego and I kept enrolling in trials. And about the second year I was there, there was a mandate, thanks to the work of all the activists from ACTF and TAG and other groups in the 80s, the ACDG required that they have community by support. So they wanted people living with HIV, advising them on the design and conduct of the trials. So I was asked to do that. I formed the first advisory board at UC San Diego and then started going to the national meetings. And that's when I kind of fell down the research rabbit hole. I drank the Kool-Aid, I was a true believer and I felt like it was keeping me alive and it was our only hope really, it's fine treatment is to get drugs into bodies as quickly as possible and see what worked. So that's kind of my early story. I'll stop there and see if you have any questions. Yeah, I mean, wow, there's so much to unwrap there. Yeah, you touched on so many really interesting things, taking back to getting your diagnosis and this person you're looking to for guidance coming in with a hazmat suit and telling you not to be shocked like the visual imagery I get from that is just like, oh my God. And like treating it like radioactive all of a sudden. Oh yeah, totally. I'm completely relaxed by you telling me not to worry. Unreal, that reminds me when I was diagnosed with AIDS on my birthday. And I remember, I already knew I had HIV at that point and I had done my followup and I was sitting in the doctor's office and the door was wide open and the nurse walked by, he was like six foot two, six foot three or something, really big, gruff guy with tattoos and piercings and like hunched over and walked by and he like pups his head back in and he goes, hey, you know why you're here, right? And I was like, yeah, because I have HIV. And he goes, kid, you got full blown AIDS and then walks off. Wow. I was like, that was my like first experience too. So that was interesting. And it struck me that you got a routine test going to the dentist. I've never even heard that today. They didn't test me there. She just diagnosed the growth in my mouth, identified that with, associated that with suppressed immune system and suggested I go somewhere else and get tested. Gotcha. You can get tested in many places. Because I just had a... I was gonna say most people were going to these anonymous county sites because of the stigma and they would actually counsel you when you were signing up for the test. They said, you don't have to give your real name. A lot of people do a pseudonym, the most common ones are Ronald Reagan and Nancy Reagan. We have a lot of those. You can be Ronald Reagan with the number and then get your test and everybody has to know. I recently did an interview with Dr. Marcus Conant and he was saying if we just had routine tests for every single person for doctor's visits or his example was like, if you have to go to the DMV and renew your license and you have to have an oral swab, that alone could end the epidemic in the United States. And that, just saying that you went to the dentist and that the dentist was the one who encouraged you to get tested just kind of brings that into light. How we still don't have anything like that today. And I think that would be so impactful. Yeah. I mean, like we were saying at the beginning of the talk, we have the tools we need. We know what we can do to stop the epidemic right here and now and we just don't do it. Yeah. And that's so frustrating. That's largely due to the stigma, right? There's so much stigma around HIV. People in routine healthcare settings do not want to administering HIV tests. They know that, you know, as we experienced it could be a kind of traumatic and, you know, people rightfully want the right kind of support there. But it can be done, lots of systems are doing it. There's no reason we can't do it there. And then the other thing that really was like, wow, was them really prodding you on whether you would kill yourself. And so if you had said yes, would they not have given you the test? Would they not have given you the test results? What do you think would have been the play out of that? That's my guess. I mean, we didn't go down that route, of course. It's so bizarre. But yeah, people literally were getting the test results and going and telling themselves because they had watched their friends die really horrible deaths, the stigma they endured and that sort of thing. So it was definitely something that people were concerned about. And then I love that you took that information and with your prognosis and said, I'm gonna go get a gym pass. For me, like when I found out that I had HIV, I may as well have been told that I was gonna die because I didn't have the knowledge, the education to understand what the possibilities were for me in 2012. And so I was already like, okay, well, I have two, three years left. So what do I do with my, do I finish school? Do I just take whatever money I have and go travel the world? Like what do I do now? And it certainly wasn't, all right, let me be extremely healthy right now. So Kodos, do you think that that contributed to your health, the fact that you were able to make it through that period of time? No, absolutely. I think it made all the difference. And I think it still makes a difference, right? We kind of rely on the pills now. We think that's gonna make everything better. And as we'll probably get into in a minute, there's so much going on, the pills can't address. And we have to kind of go back to what we did back then. Everybody was being, people really had a holistic view of healthcare then because there were no effective drugs. So it's okay, what can we do to keep people healthy and alive until hopefully those drugs come out? So people were looking at not just building muscle, steroids, I can talk about probably saved my life. Really? One point in 1992, I was down to two T cells. I had both my lungs, I got PCP pneumonia, both my lungs collapsed. And I was in the hospital for two weeks and came out with 125 pounds, looking like one of those concentration cancer things that I'd seen my friends turn into. So I kind of clawed my way back to health and managed to gain some weight, would lose it. It was a real struggle. And there's an amazing activist named Nelson Virgil who was going to the AIDS clinical trials groups in DC and had a community meeting in DuPont Circle one evening during the meeting and talked about what was happening and how there were doctors in LA who had been prescribing steroids to their HIV positive clients, bodybuilder clients. And they weren't getting sick. Other people were, but they weren't getting sick. So he said, okay, there's something here to building muscle and maintaining it to keep people alive. So there became this whole kind of first kind of a black market effort to do that. But then people started noticing and they started doing research around that. So I enrolled in a couple of those first trials and it was a dramatic turnaround. I would gain 30 pounds and 300 T cells for the course of six weeks. So I think that really, I really credit that with saving my life. Then I also tried growth hormone. And that was being looked at for wasting as well. So yeah, in the absence of effective anti-HIV therapies, we were looking at other ways to keep people healthy and alive and got very creative and made a different difference for some of us. Yeah, that's so fascinating. I never thought it was the first time I heard that. And also when you spoke earlier about just kind of the things that were going on, the creativity as you called it with the drugs and people trying to get a hold of the drugs and who's getting prioritized in clinical trials. And now with the kind of like anecdotally where you're hearing about steroids and growth hormone, it reminds me of the early days of COVID even when people were really kind of like, there were things that seemed to be working and where you're hearing it in some circles and there's kind of like buzz going on and people are trying different things. And I think there's so much that could have and should have been learned from that time that can really inform, should have informed the COVID pandemic and prepared us more. Oh, absolutely. I mean, in some ways it did. The research that was done about identifying viruses really helped them to identify the genome of COVID right away within weeks that happened and they were already designing a vaccine. And that mRNA vaccine platform that they used for the first effective COVID vaccines was developed for HIV. So I think there's, we've really been the beneficiaries of 40 years of HIV research. But what was so frustrating and I don't know about you, but it really triggered some PTSD for me was where the similarities and how dysfunctional the response was. The FDA once again dropped the ball. You had to have symptoms before you get a test. Most viral diseases you have the virus before you have symptoms and you can spread it. So it just seemed like a very backward approach and very reminiscent of what happened early on. And then of course it got so politicized and the prevention efforts really got derailed and a million people died as a result, right? And the same thing here in the US. We have a million, 1.2 million people living with HIV because of how we did not respond early on in the pandemic. So the mRNA vaccine that you mentioned that a lot of people believe that that was new. It was completely new, newly developed for COVID and that's why there was so much fear mongering going about that. But you're saying that that was developed quite a while ago specifically for HIV. Right, I mean they've been looking at HIV vaccines since the very beginning. Early on in the 80s Jonas Salk who famously came up with the polio vaccine said, my Salk Institute in San Diego, we're gonna research this and then find a vaccine. And of course we still don't have a vaccine all these years later and he's long dead. But yeah, but that platform, oh, I think what was new about it is that they hadn't actually used it successfully against a virus before. So the COVID vaccines based on the mRNA platform were the first that got approved. So I think that's kind of where it's new but the actual platform had been studied for years. HIV is a much more difficult virus than COVID unfortunately, but that research had been done. It was there, it was on the shelf and they just plugged and played and had that vaccine developed in the fastest time in history. So really did benefit from that. And people don't realize the huge investment that we make in HIV and other research may not pay off immediately for that disease but something else comes up and you can apply it and everyone benefits. And vice versa, yeah. I was gonna ask this a little bit later but since you mentioned it, steroids and growth hormone for bodybuilding and for people living with HIV, is that still relevant today now that we have our really effective ARVs? They're not as needed but people do still have waste there. It still happens, people get admitted late to care, they don't realize they have HIV and they have, you know, developments and weight loss and so forth. So these drugs are on the shelf, they're not used anywhere near as much as they were that fortunately they don't need to be but there are people who could benefit and I think the pendulum has kind of swung and now especially newer HIV providers who weren't around back then and familiar with using those drugs, you know, don't really think about using them in patients who could benefit. So I think there's still a role for those drugs, people living with HIV and then, you know, growth hormone has lots of other benefits and could possibly be used for aging or not really addressing those issues at all. So what's all these drugs come around, right? I mean, ACT, the first effective drug against HIV was a repurposed cancer drug. It was deemed too toxic back in the 1950s and put on the shelf and so on. Somebody pulled it out and tried it and it tested with HIV. Well, I think regarding the steroids and growth hormone and all that and bodybuilding, I mean, there's so many people who reach out to me who are even unsure whether they can engage in fitness alone as someone living with HIV and then the idea of taking a protein supplement daily is like their physicians are still telling them, absolutely not. You can't take any supplements whatsoever. You know, your liver, your kidney, your this, your that. There's just so much that we still, there's so much conversation we need to have around this and I've been a competitive bodybuilder for the last six, seven years natural and I take every kind of supplement daily and I have the lab works to show that that works really well for me. So I just advise people to talk to their healthcare provider and if their healthcare provider is not willing to have that discussion to find someone who is willing to work with you on your specific, your personal goals in life because it's your life. So you have to advocate for yourself and get a second opinion if needed. And then taking it a step further with steroids and growth hormone, I would love to have that conversation to explore like for some, especially as we're aging, maintaining that muscle mass and that muscle mass contributes so much to how well we're able to function as we get older. So then talking about growth hormone, talking about steroids under the supervision of a healthcare provider. Exactly. I would love to see more conversation about that. That's the problem is, you know, these got used by bodybuilders, used and abused. Yeah. And as you mentioned, you know, it can affect your organs. It's interesting when I first went to my provider in San Diego and told him about Nelson's talk and he had provided some handouts with research and stuff, the guy knew his stuff. And he said, this is really intriguing but I was taught in medical school that all steroids are immunosuppressive and I can't in good conscience put an HIV patient on drugs like this. So that's when I started doing my research and found a study in LA for Oxandron, Oxandron and signed up for that study and I mentioned some really dramatic results. But yeah, that was the thinking back then. And it still is to it, you know, again, that old guard of HIV providers were really open-minded, willing to try whatever would save their patients lives. And that's certainly what my doctor did. You know, when I showed up on my next appointment a couple of months later, 30 pounds heavier and with 300 T cells, he stood up and sat up and took notice, right? And he said, okay, you've convinced me I'm gonna start prescribing this for my patients. And they managed a lot of people alive that way. I can see how in a time of certain desperation medical professionals would be willing to kind of think outside of the box. And in some ways it's kind of limiting now that we have something that's so effective that physicians, PCPs are more likely to say, well, it's good enough what we have. So let's just play it safe. Let's not even like try, you know. Yeah. Well, as you say, as we get older, you know, that doesn't stop everything else from happening. And we have to think about, you know, lifestyle changes, right? That's in regular aging and old people, it's diet and exercise that are the most effective treatments you can use. And that's true across the lifespan. And there's no reason not to start now, especially when you have a disease like HIV take its toll over the years if you don't. Yeah. Proactively. So that's a perfect segue. Can you tell us about the HIV plus aging research project, Palm Springs? Sure. So we call it heart PS for short, because that's kind of a mouthful. But it was started by a group of doctors and patients who are in Palm Springs, which if you're not familiar with Palm Springs is, you know, we jokingly call it God's waiting room for older people with HIV because so many people move here from, you know, other cities like San Francisco LA, large part because it's so much cheaper to live here. And as you know, for a lot of people, HIV is a disease of poverty. They weren't able to work. They're on public benefits, but they're limited and get priced out of the expensive gay ghettos that we created in those big cities. And so they ended up here because we have good health care, good services, nice weather and a real solid community. It's probably the highest concentration of older people living with HIV anywhere. So the doctors wanted to do research. They realized that we had a really unique cohort. At the time, the places they were working weren't supporting that kind of research. So they said, we need to do this on our own and decided to form this group. So what we do is provide education, both for people living with HIV. We do monthly education programs called the Positive Light program where physicians come in and talk about treatment. We get conference updates from the latest conference like IAS that just happened or the Croix conference happens every year to keep on top of the research that's happening with pure research. And then things that affect the lives of people living with HIV. So we talk about nutrition, mental health and things like that. So basically anything that can help people not just survive as they get older, but thrive. We're in the perfect place to do that here and we're really committed to making sure that happens. And we also do the same with providers. We have monthly provider dinners and bring in speakers to talk about the latest treatments, what's in the pipeline, what we can look forward to. And just kind of keep them abreast and talking to each other. As we all know, our healthcare system in this country is really fragmented. So people are working at different institutions. They never get a chance to interact. So they can really compare notes, say, hey, this is what's going on. What do you think? How are you addressing these issues? And this really became valuable during COVID. As you mentioned earlier, there was so much information out there. We really didn't know what worked. It was like trying to drink from the fire hose. So we organized a weekly task force meeting and got the providers, of course, the HIV doctors all ended up in the COVID front lines because they're infectious disease specialists. So they knew exactly what to do. They know the importance of prevention and mask wearing and things like that. And then we partnered with the public health officials both in the county and the state to keep abreast of what testing was available, what treatment was out, what the numbers were looking like, that sort of thing. So it really was a great opportunity to kind of pivot and use that structure to address that current health care crisis. So that went on for a couple of years. We kind of tapered off over time as treatments came out and the information flow wasn't extreme. And then when Muckypox happened, we did the same thing. We sprung into action and started talking with the state and federal officials about where are we gonna have those vaccines? You were talking about the PTSD of COVID and the similarities with the early AIDS pandemic. Muckypox, let me tell ya, was exactly the same thing, but 10 times worse in my opinion because we had everything there. The vaccines were sitting on the shelf, they let them expire, they couldn't roll out what they had. We had treatments, everything was in place and they still botched it. And as a gay man who'd lived through that, it just really was a painful reminder of how when something strikes the gay community, the response is not as robust as it was to say COVID. So, you know, all these lessons learned really don't get applied going COVID settling and the pandemic's just keep coming, don't they? Yeah, I think it's just a matter of time, really. What a fantastic resource that you're providing. Is there a specific age range that this targets? Yeah, so it's interesting. Aging in HIV is normally considered to be starting at 50. And on the whole debate in NHIV is if we see all these aging comorbidities, bad things happening to people and there's a debate about whether or not it's accelerated aging. So it's just the same bad stuff that would happen but just happening 10 to 15 years earlier or is it accentuated? So things aren't happening more often but when they do it's worse and so you notice it. And to my mind it doesn't really matter that's an academic debate. The fact is it's happening. People living with HIV and their providers are seeing it all the time and questioning what do we do about it? And there's so little research dollars being devoted to this, it's been really frustrating as an advocate and they keep going to the division of AIDS that parcels out the NIH funding for this research to AIDS clinical trials group and others. And the way things are set up, the ACPG doesn't wanna do much aging research. They said we look at infectious disease, we don't look at comorbidities, somebody else's problem but the problem is there's no somebody else to do that. The structures just aren't there. So the funding that we really need now to be looking at interventions is just not happening, the rate it should be. It's really frustrating. There have been a lot of good advocates like Jules Levin with NETAP in New York who is really focused on aging for the longest. And he's managed to do some amazing things there in New York, but on a national level getting the research done is just not happening. It's really frustrating. And you're the executive director now. How did you get involved to that point? Well, I was one of the kind of original people there and as often happens with a small grassroots group that's they just kind of said, you're the best person to do this and the police step up and do it. And I had no experience running a nonprofit. I was kind of the research guy, I was a research advocate. But the need was there and some of the stuff like the monthly education programs I've been doing for many years. That's been going on for 18 years now shortly after I moved to Palm Springs. Some of it was just a continuation of what we were doing. But it was exciting because we got together with academic partners and started doing a lot of social behavioral research. We weren't funded, didn't have what it took to do brick and mortar clinical research. So we focused on the psychosocial aspects. This is we know that's a big part of living with HIV. We've got effective therapy, but how do you deal with all that stigma of PTSD and people who've been living with this for a long time. We really looked at the social isolation, low-minus depression that people identified in our research as being one of the major issues along with the clinical aspects of aging. So it's kind of two pillars of the research and we were, I think uniquely qualified to do that. So we did a number of projects with academic collaborators at TBC Riverside at their School of Medicine, University of Southern California, University of South Florida. So it's really been kind of a big group of people across the country and of looking at these questions and coming up with some ideas on how we can use that information to make people's lives better. Yeah, so digging into this a little bit more, what are some risk factors that do come to mind that people should be aware of when it comes to aging with HIV? Well, I think clinically, as we were saying, it's all that aging stuff that can happen sooner. So you need to start looking at your cancer screening, your colon cancer, anal cancer. Recently, you've probably heard about the Anchor Study, which really proved screening for anal cancer in people living with HIV, catches it early, reduces death rates and keeps people healthier. As soon as you catch it, you can just burn it off and you don't have to endure chemo irradiation surgeries, things like that. So finding, identifying, and that was an incredible piece of research. That was a seven-year study that enrolled over 5,000 people, a huge investment, but it really shows that research can prove things and then change the way you do medicine and save lives in the long run. And you were involved in that study, correct? Yes, so I was on the, that was produced by the AIDS Malignancy Consortium, part of the National Cancer Institute, funded to do AIDS cancer research. And it was the brainchild of Joel Pilewski, a doctor at UC San Francisco, who had seen this in his community and it kind of really devoted his career to finding ways to prevent anal cancer and was the driving force behind this study. It took years to get, the initial investment was $89 million and I'm sure it went way over that because of COVID. So, but it worked, it proved that if you screen people, you do the pap smears and if it comes back positive for high-grade disease, you do a high-resolution enoscopy, do biopsies, find out what you've got and then treat those high-grade lesions so they don't become cancer. So it's the same thing we've been doing, you know, in women for cervical cancer for decades now and it was kind of a no-brainer but it took that study to really prove it. And sadly, our healthcare system, everything is evidence-based and they don't want to spend of any on anything that doesn't have the research to back it up. So, you know, they realize that and hold all those resources together to make that happen. I wonder if, is there any kind of guidance for these types of things like, just in general, we have like, oh, when you hit this age, then you go get this done every 10 years and this every five years. Is there anything like that that's kind of tailored to the HIV community? Yeah, unfortunately not. I mean, you're right, that's exactly what we need and we're trying to get the experts to kind of get together and create those kind of guidelines so that, you know, HIV specialists, I think are a unique breed, also a dying breed because it's a lot of the people who, you know, were there in the beginning years of the epidemic, a lot of them were LGBT folks who were really, you know, stepping up to save their communities, literally. So they've kind of aged with us along with the epidemic and so those people who really just stopped and learned whatever they needed to to benefit their patients are aging out of the profession. So we've got new PCPs coming up who are trained as either, you know, family health medicine or infectious disease, but they don't really put the disciplines together. And, you know, just like with, you know, aging and old folks, I know my parents who recently passed away in 92 and 94 and trying to find that geriatric model of care that would find the sweet spot of addressing their, their say, you know, just as an example, AFib without the drugs like completely capacitating them, you know, you can give somebody the heartbeat of a 30-year-old, but if they're too tired to get out of bed, what good does that do them? So it's the same thing in HIV is finding that balance, not prescribing pills for everything, because especially in HIV, you know, there can be a lot of drug interactions between HIV meds and everything else we put people on. So it's really important to have a coordinated model of clinical care where people are proactively screened for things that can happen, cardiovascular disease, cancers, home mineral density, developing osteoporosis, which we see a lot of that through the drugs. There's all these things that we need to be doing and you're right, we need those guidelines in place and they're not here yet. It's one of our kind of advocacy issues that we're pushing. And you mentioned clinical risk factors and then you made a distinction between those. And then I don't know if you'd bucket it as like psychosocial risk factors or something along those lines. Can you speak to that a little bit as well? Sure. Well, you know, as we were talking about the, you know, living through the pandemic takes a toll, right? People get PTSD. They watched, you know, the first 15 years of the pandemic were, you know, just really horrible. People, there was no treatment. It wasn't, it literally wasn't that sentence as we discussed. And there was nothing you could do. So it took a real toll on people psychologically. They lost their lovers, their friends, their entire networks, their entire support networks were just decimated. So just like living through a war, right? Veterans come back, they're shell-shocked. It's the same thing. People have been for an incredible amount of loss and pain and suffering. So when they, you know, that stays with you, right? It doesn't go away. And as resilient as people are and they come through all that and kind of clawed their way back to health and, you know, now that it's not a death sentence, they have futures to look forward to trying to create lives, that stays with you. And I think any kind of, you know, we talk a lot about culturally appropriate care models. That's what we need for HIV, that it acknowledges that people have been through this and addresses their psychosocial issues. You talk to doctors and, you know, they can put people on HIV meds that's completely suppressive virus. They can address all their other clinical issues. They've been to medical school. They know how to control blood pressure and, you know, check for kidney levels and all that stuff that you need to do is people get older. But if somebody is so depressed, they can't get out of bed or keep their appointments. Are they isolating and just miserable all the time? Over-eating. Some people turn to drugs to kind of self-medicate the pain. That's the thing that doctors don't know how to deal with and that's the number one complaint we hear. And then from the people living with HIV from their perspective, they go to turn to their local ASOs for support and, you know, 40 years into the epidemic, the people they're dealing with, they're sitting across, are freshly admitted. Oh, sure, an AIDS service organization. So the organizations that we go to for AIDS services these days tend to be staffed by younger social workers and case managers fresh out of school in their 20s, weren't even alive when people were going through this. And they're taught, you know, if you're virally suppressed, your CD4 count is above a certain level, you should be fine. And they see these people who aren't fine. I mean, clinically, they're well cared for, but they have, you know, all kinds of psychosocial issues and they can't begin to really address their needs without better understanding that. So there's a real need out there for education that people providing the services so that we can't provide that culturally appropriate care. And ideally, higher people living with HIV who have that lived experience. In the early days of the pandemic, we had a lot of volunteer peer advocates and peer coordinators. I know I did that for a number of years for a local AIDS service organization in San Diego and it makes all the difference to have somebody sitting across from you who comes from the same experience who's experiencing the same thing, knows how to navigate the system and can just tell you it's gonna be okay, especially for somebody who's newly diagnosed. Kind of take away that fear and say, hey, I've been dealing with the same things. I'm fine, yeah, it's challenging but we can't get through this. It's so important to provide that for folks. Yeah, I think you touched on something really relevant in that when you're diagnosed with HIV nowadays, our doctors like to tell us that we rightfully so that on ARVs, on effective treatment, we're undetectable, we can go ahead and live our lives and be on your merry way. And that's, for a long time, that's what I believe that. I was like, okay, I have like maybe five or so years on average less than someone who's not living with HIV. I don't really understand why, if everything else fine, but okay, great. And that's the message I was putting out and telling everybody. And then little by little, especially as I got involved with the HOPE cab, all of a sudden I'm realizing, oh, it's not that simple and black and white. It's way more nuanced. There's a lot more going on here that's not even being broached with patients and with people living with HIV. Yeah, and a lot of it is generational and situational, right? If you were somebody who was on PrEP and had a lapse and got HIV, started on treatment right away before your T-cells dropped, those people are a completely different animal than someone who got HIV back in the early 80s, lived for 15 years, uncontrolled virus and taking a lot of really toxic meds and the toll that takes on your body. So this, yeah, there's a lot of differences in kind of who has HIV for how long, what meds they were on and how that's affected their body and their psyche, right? People who experienced all that loss and stigma in the early days have more to deal with than someone. You know, it's interesting because you talk to people who get diagnosed recently and they still have the same, oh my God, I'm gonna die, even though we're 25 years beyond that at this point, right? But those fears are still there and it's fascinating to see how those crop up and how people still have to deal with that today. Yeah, but all those factors definitely speak to why it's so important to have that personalized care that you're talking about. And right now there's a fantastic web series going on that is it, I think it's done by the DARECAB. It's a collaboration between the DARECAB, our red HIV CAB and the CRISPR-Fritzior Caps. Okay, so three caps together, great. And that's focusing specifically on research related to aging with HIV? Exactly, and the issue specific to people aging with HIV in cure research. It's true of a lot of clinical trials, but especially in cure research, they tend to exclude older people and our advocacy kind of position with that is that we're the majority of people living with HIV now. The vast majority are over 50, it's gonna be over seven day by 2030, I think. I mean, it's really growing rapidly. So these are the people who would need to cure. So when we do this research, it needs to be in the population that's going to be accessing this treatment, that needs this treatment. So it's something that we're really focusing on. But there are also, we were talking about all the comorbidities. These are risks in these early cure trials and a lot of them require people stopping their treatment going on what we call an analytical treatment of eruption. And that comes with risks. Something called a smart study done years ago that showed that taking what they used to call drug holidays is actually bad for you and people diet higher rates if they're doing that. So when you're talking about studies where people have to stop their meds, you've got to think long and hard about what those risks might be and then balancing those risks with the need to study the population we're going to be using this treatment. So it's a fine balance. It's a negotiation every time and we're sitting on those protocol teams as part of our collaboratories saying, who do we let in, who do we not? We've got to think about the dangers. Also, if it affects how well it works because somebody has an older immune system that may not be as resilient as a younger person's that could kind of shut down the study before you really know if there's a possibility it could work. So a lot of things to balance there. Touching just a little bit more on the web series, I've been watching it, I've been following along and I like that one of the speakers was talking about your actual age versus I believe your biological age. And that's based on your health. So you can be 50 years old but you can have the biological age of someone who's 43 because you've just been maintaining your health so well. And that is also a consideration. So just because you're not 50 years old doesn't mean that you shouldn't be thinking about these things already. If you're 40 years old and your health isn't doing so well then maybe this is something you want to start earlier on. Is that? Yeah, no, that's an excellent point. And it's something where, that's kind of one of the arguments we make when we're talking to researchers about expanding the upper age limits for trial inclusion that you could have a very healthy 65-year-old or 66-year-old often cut off to 65 who's in perfect health. Everything on paper in their laps is great. You have somebody who's 50 who's in really bad shape and should not be in that trial. So what we're advocating for is that there'd be a scientific rationale for those exclusions. So it has to be, are your kidney function tests good? Liver function tests? All those things. And not just use age as kind of a blunt, really inaccurate marker for typical lab studies because like you say, there's so much that can affect that. And we're not all the same regardless of our age. Yeah, that's such a great point. Okay, so you are the community engagement coordinator for the RIDCAB, as part of the larger 10 Martin Delaney collaboratories. Folks, for those of you who've been watching, I've talked about it here and there about being part of the HOPE Community Advisory Board. That's what CAB stands for. And so there are 10 CABs as part of this Martin Delaney Collaboratory Organization. It's funded by the NIH, by the government. And we are working with scientists and researchers who are working towards an HIV cure and giving feedback and advising them and also taking what we learn from them and then hopefully disseminating that into community. And that's the big part. It's bridging community and science and research. And you're doing a beautiful job of that with your series of webinars here. Well, thank you. I'm trying, it's a very, very steep learning curve. I can tell you that much. There's so much to learn, but it's fascinating. Yeah, that's exciting. I mean, it's like, you're right. It's like drinking from a fire hose and things are changing all the time. But yeah, it's exciting as well. Yeah, that's a good analogy. Getting blasted in the face with a fire hose, trying to get a sip of water. And I think there's a vast desire for this kind of education and knowledge. I've been saying recently, I see so much, especially on social media, a lot of the talking points are very like what I would call HIV 101. There are basic fundamental facts that everyone should know and they're important and vital. And then aside from that, then you have the other side of the spectrum which is very dense, heavy, scientific information and there's really not a whole lot in between. And I feel like, especially those of us in the HIV community living with HIV, we want to like experience all that wealth of knowledge that lies somewhere in between where we have the opportunity to learn and kind of to be challenged and to kind of, you know, have to go on that journey. Like it's something like, if we're talking to you and I'm sure there's a lot of terms and things that we're saying throughout this interview that someone who's completely new to it is gonna watch and go, I don't understand. But they're gonna understand a lot of the basic concepts and the more they're exposed to this type of content, then they'll slowly start to recognize, oh, ATI, I know what that is, undetectable. Okay, I get what that is, viral load and start to pick up on these things and learn more as a community, I think will benefit from that. Well, and there's such a need for both medical literacy and research literacy and we don't really have that in this country. Like you said, it's either really basic, which is good, people need that. But there's really not a lot in between them and the geeks who kind of go down to the research rabbit holes. And I think, you know, this came to bite us in the behind with like COVID, right? People didn't trust the process because they didn't understand how it worked. We were talking earlier about the mRNA vaccine. It's, oh my God, this is brand new to experimenting with people. This is dangerous. People didn't want to do it and they didn't understand, like we were saying, it's been around for years. This is just the first time that we got it to work. And it is incredibly safe and people don't understand how the research happens to be reassured of that. And that's, you know, exactly why community advisory boards were created, right? Is to make sure that there was a community voice there to ensure that the research being done ethically in the right people, serving the needs of the people with the disease you're studying. So yeah, there's a lot of work that we as advocates need to do to kind of fill that middle space you're talking about and increase the knowledge and therefore the trust and the research that's happening. It wasn't until recently also, I think I heard Tom Bula talking about it, the ACTG, the AIDS Clinical Trials Group. I'd never heard of that or maybe I did and I wasn't aware of what it meant, what it stood for. And you've talked about it quite a bit as well. Can you tell me more about that? You're on the Community Scientific Subcommittee and can you explain what that is as well? I was at one point. Yeah, as I mentioned earlier, I mean, they were the ones who first started getting the research to do the early treatment research back in the 1980s and did the first ACC trials and that time we're doing a lot of opportunities to confection research. That's how we were keeping people alive was by preventing the infections that were killing people. So they've been around since the very beginning and at first they didn't allow anybody from the community to attend those meetings. It was closed to scientists only and act up, being act up, stormed to the meetings and said, no, this kind of quote of the Denver principles of nothing about us without us, this is about us, we need to be here and we're not leaving. And it's to Tony Fauci's credit, he listened to the activists, became friends with people like Peter Staley and Martin Delaney who really helped shape the research. And it became a real collaboration that made things happen that wouldn't have otherwise. Research was painfully slow back then and they made the ethical argument that people are dying. You don't put them on a placebo-controlled study. And I was in one of those and the endpoint was who lived and who died. And there weren't many people left at the end of that first study I was in. So really turned the tables on how that happened and it's benefited so many other disease areas. Breast cancer is a good example. They even borrowed our ribbon, right? So, it's made a big difference. And so they're still here today and they're doing a lot of the research and how it kind of ties into pure research is that, as you mentioned, the Martin Delaney Collaboratory the 10 of them now are funded to do a lot of the really basic and translational research. But when you start putting the concepts learned into people, a lot of that research is done in mice and then monkeys after the test tubes. That research is supposed to be done at the AIDS clinical trials group because they're set up to do those larger clinical trials and larger groups of people on multiple sites, which is how you really prove if something works, right? So that's where they come in and where we are right now in terms of the peer researchers. If something looks promising, then it gets kicked upstairs to the ACPG and we start putting it into bodies. And the people like you and me from the CABS and the collaboratories follow a study to the ACPG since we've been involved with the beginning, they have their own community reps. So they really have a robust way to ensure that the community voices there at the table. You know, as we discussed earlier, there's so many issues around stopping your drugs. What does that mean for people, sexual partners? And there's a lot of really thorny ethical issues that raise their head in these kinds of trials that we don't have a lot of experience dealing with in treatment research and vaccine trials prevention research that they had to address those issues a long time ago. And again, it's about breaking down those silos and taking advantage of what we've learned from those and applying it to peer research. And there's some amazing social behavioral researchers like Karim Dubei now at UCSD who's been doing this for a long time and have really been tireless advocates and saying, no, we need this and it needs to be funded. People recognize that it's important but given the way things are structured, the funding has not traditionally been there. So again, it's moving mountains to get funding where it needs to go to do the research in an ethical and productive way. And it's better research when you make sure people in the study or their needs are addressed. Otherwise, what were the feet and need to study? Well, thank you for putting into perspective where the MDCs in Cure Research kind of falls in that progression timeline because I really didn't understand. It's everything's so fragmented still in my head and being able to understand. That's because it is reality too. It's not just your head. It's a very fragmented system. Yeah, okay, we'll go. And is there also, I think I remember seeing like kind of like a database of clinical trials that are ongoing or just starting, looking for people to enroll? Like, can you go to the ACTG website and find clinical trials in your area? Yeah, there's several places you can look. So there is, and I think it's actgnetwork.org. We can throw that up later. Yeah. There might be a hyphen in there somewhere. So they list a lot of the studies. Another resource is the clinicaltrials.gov website which lists all research that happens across the board. So you can just put in your search terms for HIV and Cure and things like that. And the studies will come up and they have information on not just the trial design and who qualifies and who doesn't, where it's happening and what the contacts are. And then, yeah, and then there's the, there's a great community resource by treatment action group in New York. Richard Jeffries is kind of their Cure Guru. He's an activist who's been following us really closely and I think understands the science better than any other kind of community person involved in those, better than a lot of the scientists, I think. It's put together an amazing resource on their website where they list all the cure trials current and in the pipeline. So for me, that's, I think, kind of the best distillation of the state of the research and they do an annual report on kind of where things are. And of course, they work with us on a lot of the webinars and educational efforts that the collaboratories do like the CROI, Pre-CROI Community Workshop, the webinar series that you mentioned were always coming up with more ideas for those I know we've done a few in Spanish. But yeah, there's just so much information to get out there and there's some great resources out there. Okay, well, time flew by. We're coming up on the hour here. There's, I mean, we've literally barely scratched the surface on all these topics. I'm more than happy to bring you back on if you are interested in doing that. I would also love to, because you mentioned with your, with Harps, you do monthly updates and things like that and have speakers on and stuff like that too. Maybe not monthly, but periodically bring you back to get some of those updates and share that with my audience as well. Sure, so we, you know, ever since COVID we started recording all these on Zoom, even that thing. So we can provide you the links to that. You can put up the schedule of what's coming up for the rest of this year and the YouTube archive, everything we've done. Same thing with the stuff we've done for RID. Okay, and Michael Luella's Facebook page has, I think it's probably the most comprehensive of listing of all the video and the social media resources out there. So folks, I will have links in the description box below this video with the ongoing web series on aging and HIV and related to cure research. I'll have the websites for the ACTG Network, clinicaltrials.gov. I'll have the TAG Treatment Action Group website, the Zoom links for the heart PS update, the Zooms that they do, Michael Luella's Facebook page, whatever else I can manage to think of. Jeff, is there anything you would like to touch on before we wrap this up? Well, this may be a topic for a whole other video series, but I mean, just talking about the people who've been cured. I know you've interviewed some of them at Acosta Yeho last year. I know I introduced him to you and the Paul Edmonds, the city pope patient who lives here in the Palm Springs area and then both he and Adam are on our cab. And as we heard it, the International AIDS Society meeting in Australia last month, there's a new member of that club called the Geneva patient with some interesting twists to his case. So yeah, and there's a group of people living out there Mark, the Dusseldorf patient who are alive and cured of HIV. So I think that's a really fat and that's why we're doing this research. Right, Timothy Rape-Rown's case, who sort of really blew the doors open. I'll tell one little anecdote. Years ago, a cure researcher that I knew from doing treatment stuff, now came up to me and said, you know, we want to study cure research, but we're afraid to. Like why? It's like, well, we don't want to give false hope. You know, HIV cure was the C word for so long because early on we talked about Jonas Salk and how he had said, oh, I'll create a vaccine. We didn't have government officials promising that we'd have a cure within months. And it just provided so much cruel false hope for folks. So when this whole thing started, they really didn't, were scared that people would shut them down and say, no, we need to focus on treatment. We need to focus on prevention. And I said, no, no, we want a cure. Talk to anybody living with HIV. Keep asking this question, you know, and we started doing focus groups around that and finding out, you know, what people's hopes and desires were around that. And what sacrifices people were willing to make and the most amazingly, that was really eye-opening for me. So, yeah, there's so much more we could talk about, but I think that kind of bears mentioning people's willingness and altruism to do this work. Yeah. And as Jeff mentioned, we, I will be interviewing Paul Edmonds, known as the city of Hope Patient, the fifth person cured of HIV at the annual meeting in September for the Hope Cab. So that will be coming up. Keep an eye out for that. I'm also gonna be interviewing Tom Villa of the Hope Cab soon to talk about his clinical trials experience, concerns, ATIs as we talked about very briefly, analytic treatment interruptions and partner protections and things like that. So keep an eye out for that. Okay, that's it. Okay. Jeff, thank you so much for joining me, everyone at home. Please comment below your thoughts, your comments, your questions. I'm happy to follow up as needed. Jeff, a huge thank you to you for being so gracious with your time and your expertise. Everyone at home, thank you so much for watching. Be sure to like, subscribe, hit that bell so you get a notification every time a new video comes out and share this video with anyone who you might think would find value in this content. All right, until next time, cheers.