 Hey everyone, I'm Raif Derrazy and in this video I have the great pleasure of interviewing our special guest, Paul Edmonds, otherwise known as the City of Hope Patient. We'll get to hear about Paul being cured of HIV, his successful leukemia treatment, what the whole process looked like, and get to know him on a personal level as well. We are currently in Novato, California for the annual Hope Collaboratory Conference and meeting of all the scientists around the world working on the block-lock stop modality of pre-clinical research for an HIV cure. Specifically, we are at the beautiful Buck Institute, which focuses its research on aging, including aging with HIV, as part of their spectrum of research. Paul, it is so great to have you on. Thank you so much for joining me. How are you? I'm great. Glad to be here. And okay, so this is a question I ask a lot of my guests. Just in general, what is your personal assessment of the global HIV AIDS epidemic? Well, you know, globally, we need to work on access for treatment. Make that better and affordable for everyone in the world. And the same thing with working on a cure, make it approachable for everyone. So I think there's a lot to do. And you are the fourth person cured? I'm the fifth. You're the fifth? You're the fifth person of curing HIV? Yeah, I got all mixed up in reporting. Oh, okay. Yeah, I noticed that there were different numbers on the media. I'm number five. So you are the fifth person cured of HIV, or what is sometimes referred to as functionally cured of HIV? How does that feel? Well, it feels great, I think. I'm starting to believe it. I still have to pinch myself every once in a while, I'll tell you it's real. But yeah, it feels great. Wonderful. Okay, before we dive deeper into your HIV and cancer diagnosis and your experiences receiving treatment, I'd like to learn a little bit more about you personally. Where are you from? Where did you grow up? I grew up in decor, Georgia. It's a small town about an hour and a half northeast of Atlanta. Okay. That's where I grew up. And what brought you out to, because now you're living in Palm Springs, correct? Right, right. Well, I moved to San Francisco in 1976. Okay. What brought you out there? Well, I came out and accepted that I was gay, and I headed to San Francisco. The place to go at the time. Yeah, it's different these days. You can really kind of live almost wherever you are near a metropolitan city and find a gay community. But I imagine maybe it was a little different. Well, I think it was, and a lot of people were moving to San Francisco then. And I had that reputation for being the gayest city in the country at the time. Okay. Now, moving into your cancer diagnosis, when did you find out that you had leukemia? Well, I found out I had MDS, Myelodysplastic Syndrome in June of 2018. And my HIV doctor sent me to a hematologist because all my labs were off. They changed in a three-month period, and everything was off. And he did a bone marrow biopsy and diagnosed me with the MDS. And I told him, and I was thinking of moving to Palm Springs at the time. I bought a condo there, and he told me about City of Hope. The doctor in San Francisco wanted me to start on chemo right away within a couple of weeks. So I went home that day at Google City of Hope and called them, got an appointment, and went down within a week. And I decided to go with them. And my doctor there suggested that I might want to think about not starting chemo yet because I really wasn't having any symptoms, some fatigue. But otherwise, it was just my labs all being off. And can you explain for those who aren't aware what MDS is? It can often be a precursor to leukemia. Not always, I guess, but often it is. Mine turned out it was. But I was going to say when I came down to City of Hope, well, what happened after I went to City of Hope about a month later, almost exactly a month later, my doctor called to tell me they had found a donor and the donor had the CCR5 Delta 32 mutation. And I kind of didn't expect them to find that because it's so rare. So that was thrilling to say the least. So I moved down in October to Palm Springs and City of Hope started to work up for about a week before the transplant. And that's when they discovered that it had progressed to AML, acute myeloid leukemia. I see. And what does that affect specifically? Or where is the cancer in the body? In your blood. In your blood. Yeah, yeah. It's a blood cancer. It affects the bone marrow as well? Yeah, yes. Yeah. And so I take it that you already had HIV when you discovered the cancer? Right, right. Because you were going and getting your labs? Yes, I tested and got an AIDS diagnosis at pretty much the same time. In 1988, my two cells were around 50, I think, at the time, although I wasn't sick. But they gave me that AIDS diagnosis because of that low T-cell count. And so at the time, it wasn't necessary to have an AIDS-related complication? Well, no, they were counting the T-cell count. It dropped under 200, I think. The number? And back then they didn't have the medications that most of us are familiar with today. That was the height of the epidemic. Right. In the beginning, it was just the ACT. That's what I started with. They had, before I started ACT, they had decided to drop the dosage and cut it in half. And I think maybe that's why I might have survived because I lost a lot of friends, I think, because the ACT was so toxic. You know, you're not the first person that I've spoken to who said that they personally decided to drop the dosage and that might have contributed to the success. So then other things started coming along, things that I remember. I don't even know how many HIV drugs I've been on. I could figure that out. DDC and DDI come to mind. They came along next, I think, after the ACT. In the 90s? Well, that might have been 89 or 90, I would say. All those drugs were really bad. They pretty much kept me feeling sick most of the time. Yeah, alive but sick. Yeah, exactly. Well, I can't imagine because even in 2012 when I was diagnosed and was put on a triplet, that was horrendous on my body. Yeah, it's a shock, I think, to our systems. Yeah. Things didn't prove, though. Protease inhibitors changed everything. They were kind of rough in the beginning, but they quickly got better. And initially, I believe it was like a one-drug approach and then was the protease inhibitor like the second component? Right. That makes me think of Norvier. I think when I started taking Norvier, they started using Norvier as an add-on drug. I think when I started taking it, I was taking it not as an add-on, and it was a pretty rough drug to take in that high of a dose. Yeah. So, does your particular kind of cancer that you had, is that what qualified you to be able to have this stem cell transplant? Well, yes. Yeah. That was, you know, I mean, I could have opted to, I mean, I had to do something, or I would not have survived, so I didn't have to think too hard about deciding whether to do that or not. Yeah. I mean, I could have opted, I know people who have had leukemia who just had the chemo and not the bone marrow transplant. And you did both? I did both, yeah. But in order to do the bone marrow transplant, they wanted the leukemia to be in remission. So that took three different kinds of chemo for that to happen over about three months. It was in the hospital five months. And, you know, I didn't know what the chemo was going to be like, expected it to be pretty bad. Yeah. It wasn't as bad as I thought it would be. Really? Yeah. Not as bad as just some of the medications that I've dealt with over the year. Okay. So you had something to compare to? Yeah. Well, that's the fortunate. Yeah. So for folks watching, Paul received a stem cell transplant from a donor with a rare genetic mutation, also known as homozygous CCR5 delta 32 mutation. And I believe it's prevalent in only one to 2% of the population worldwide. So it's an extremely rare mutation. And he was fortunate enough to have access to that. And I get a lot of questions from community asking, oh, great, we have a cure. So can we all, can everybody do this? Can everybody just get this stem cell transplant and then be cured? Yeah, yeah. No, no, it, because there's so many risks involved with it until they don't want to do it unless, you know, you're at this place to where that's kind of the only thing you can do. But yeah, it's not for everyone. But hopefully the science will, the things that are learned from it will create something that's everyone, for everyone. So to be, so to be clear and to sort of reiterate what Paul was saying, the risks that are inherent in the procedure are so high that it's not recommended for the general population and in someone like Paul's case where they're facing possible death because of cancer, it's, there's a risk, there's a cost benefit weighing that has to be done. And in his case, it was worth it to take that shot. Yeah. And it turned out well. Absolutely, it sure did. And you, getting back into your personal life a little bit, you've been with your partner Arnold for 31 years? A little over 31. Over 31 years. Last anniversary. February will be 32. Amazing. How did you meet? We met at Happy Hour at the Midnight Sun. What's the Midnight Sun? Midnight Sun's a bar and sandwiches come in the Castro. Cute. Been there a very long time. Amazing. Was there when I got here in 76. But not in the same spot. Yeah. And what is your secret to a long lasting relationship? Well, those of us want to know. Well, you know, we were normal. We've had our ups and downs, but we, we, we for a long time, we worked, we work as a team and we try to be honest and open with each other. And we, we work together, but we also don't lose our own identities. I think that's kind of important too. So you kind of have the permission and the freedom to be yours, be yourself? Yeah, absolutely. Have your own hobbies and likes? Yes, yes. Like Arnie, Arnie does acting and you know, that's definitely not my thing, but he's very good at it. I love seeing him. I paint. Arnie paints some too. And does Arnold also have HIV? Yes. Okay. Yes, he does. Yes, he got tested. When we met in 1992, he had not been tested and we talked about it and he decided it was best to know. And he got tested and he was positive. He's, he's undetectable. We also had a strain of HIV, he has HIV one. So I'm immune to that. Great. And was that a source of comfort in a way to have someone who understands you and what you're going through as well? Well, yeah. Support each other? Yes, absolutely. Yeah, we kind of, all these years we've done it together, you know. My boyfriend is negative. I'm also undetectable. So fortunately these days, you know, once you're undetectable, you're untransmittable and he still supports me. He's there for me as well and we don't really have to worry about it either. Okay, I wanted to ask, what is that dynamic like now that you are cured of HIV? Your partner's living with HIV? I feel like when in life we're afforded wonderful opportunities, amazing opportunities, you're now functionally cured. We want to be able to take our partners along with the ride, on the ride with us. Does that dynamic impact your advocacy work now? Basically, I just want to know you being cured and Arnie is living with HIV. Right. Knowing that between you and your relationship, does that motivate the work that you're doing now as far pushing for, you know, cure research and funding? Well, of course it does. You know, I really want to see a cure for everyone. You know, I would love to see Arnie cured of HIV. But you know, and then on the other hand, it hasn't changed things a whole lot for us because on a practical level, yeah. Well, that's, I mean, that's a testament to how far we've come. Absolutely. Okay, so you had, I read that you had a strong resilience and optimism, hopeful, hopefulness for the outcome of your cancer treatment. Tell me about what you were thinking, what you were feeling as you were getting preparing for it, going through it, where and where does all that resiliency and positive outlook come from? Well, I think it comes from the, all of my years of having HIV. I mean, I've had HIV, you know, over 30 years. You know, I never gave up and I still don't. So, you know, I don't necessarily, like I didn't convince myself that I knew this would work. I just kind of let myself go with the flow and trusted in my doctors and, you know, it all worked out. But I just, I've never, I don't ever give up. But I don't think that's an innate quality. Like, did you have that quality when you were diagnosed with HIV and going through the thicket? I did. You did? Yeah. Yeah. So, there was something in you already? Yeah, yeah. Obviously, I think there was. Yeah, I just fight her and I don't give up. And what was that initial news like when you were told that they found a donor for you? That was, well, just one of the best days in my life that I can think of. Did they bring you into the office? No, it was a phone call because I was up here in San Francisco and he was in Los Angeles. Yeah, he called me and told me and, you know, made my day. And what did the doctors tell you about the stem cell transplant procedure? What was that process like? Well, you know, they told me that it had a great risk came with it. You know, tell me it could be fatal. You know, if they see of hope, that's the main thing that they do are bone marrow transplants. And I knew a number of how many they've done, but that's a lot. And if they're one of the leading places in the country doing it. So, I imagine that was a, you had a sit-down conversation with Arnie, too, when you both kind of came to the same agreement, same page. Yeah, I, you know, like I said, I didn't, I didn't have to think about it very much. I just wasn't ready to die. So, I needed to do what I needed to do. That's kind of how I've always been. I, you know, I'm, I was an equal scout, you know, be prepared. And, you know, I just, I do what needs to be done. That's what I always have tried to do. I think, okay, because I'm trying to suss out a little bit of like what makes you so successful in that regard. And I'm getting a sense that you are not one to overthink and dwell. And you are ready to make a decisive action, a decision when needed, when the time calls. Yeah, pretty much. You know, I wasn't always like that. That's been something I've learned over the years. A lot of that learnings come from my experiences with HIV. But growing up to, you know, I was, you know, growing up in that small Southern town and was not gay-printly at all. That'll teach you resiliency right there. Sure did. Yeah, I can relate because I was definitely, I was such an overthinker. I mean, I still am prone to overthinking. Well, I've had to work at it, you know. Yeah, exactly. It's been a process you'll learn to just, you know, make yourself stop. Yeah, exactly. And certain routines help in planning and organizing and things like that. Yes. So now I want to jump to post-treatment. Can you talk about what that experience was like when your doctor set you down and gave you the results? Well, you know, I started getting the results of the HIV test early on that, you know, everything was just coming up negative. You know, they weren't finding anything. So it was pretty immediate? Well, yeah, testing negative to HIV was very immediate. They didn't say it, you've been cured, but they just, you know, they kept me impressed at, you know, knowing what was going on all the time and, you know. Takes time to come to that conclusion. The longer it goes, the better it gets. Yeah, so I, let's see, it's been, it's approaching five years since the transplant and approaching three years since stopping the HIV meds. It's pretty conclusive? Yeah, yeah. I think they want to say after five years they're going to say you're cured. Okay, okay. So there's like a probationary period? Kind of, I think so. The doctors and I had planned on, I was going to stop my HIV meds a year after the transplant, but then the pandemic came along. I really was concerned about that and I didn't want to do it until I was able to get the vaccine for COVID until I waited another year. And is there like, do you have to do follow-ups now? Are they still? Oh yeah, I think probably for the rest of my life, but I went, the longest period I had gone was this last appointment was six months, but I see, you know, I see my infectious disease doctor, I see a dermatologist, and my hematologist. So a life not totally unlike those of us still on treatment? The life that I've been used to for a long time. You just get a little negative mark on your, on your documents. Well, what's next in store for you? However you'd like to answer that. Okay. Professionally, personally. Yeah, well I'm going to, Arnie and I are both going to the NIH next month for HIV cure boot camp. So I'm hoping to learn a lot there. Is that separate from the annual Martin Delaney Collaboratory meeting? Yes, it's like the day before. Oh, okay. Then we're going to go to that. Okay, so I'll see you there. Oh, okay, great. Awesome. And then after that, we're going to the RID meeting in Atlanta. That's the annual meeting for the RID. Right. Cab. So that's what I'm doing with that. And you know, I'm going to Honolulu this Wednesday from here for the Hawaii to Zero group. Yeah, so you're here with Mark Franca. Yes. The Dusseldorf patient for those of you who aren't aware. And then you're going to be both going to Honolulu to meet with Adam Castillel, the London patient. Right. Sign up kind of a tour of the three here. This would be the first time the three of us have been together. Fantastic. Yeah. And do you have a particular objective or goal doing this tour together? No. Are you fundraising? I think Mark and Adam have been doing fundraising in Europe. Gotcha. I'm more than happy to work with fundraising. I'm happy with that. But so far, I haven't done anything yet. We're all going to be on the stage and do a question and answer as a group, I think. Great. That's the plan. But I think Lish will be moderating. Lish is one of the principal investigators. There are three principal investigators of the HOPE Collaboratory. An investigator is just a fancy way of saying researcher. So the three main researchers for the HOPE Cab. It took me a year to learn what an investigator was as a community member. You get thrown in and you have all these terms and jargon thrown at you. And I'm sure as you're diving into the world. Well, exactly. Yes, it's lots to learn. I mean, I'm also on the community advisory board for RID. And the goal with my channel and what I'm doing is to hopefully be able to share that with the audience and give them little pieces here and there so they can start to learn with us and not feel so disconnected from the science community. Absolutely. Can you offer up any advice for those who are living with HIV who may feel that love relationships are no longer in the cards for them because of their diagnosis? Well, if someone, I kind of don't understand why someone would feel that way. There are a lot of folks when they're diagnosed who still lack proper education as someone diagnosed with HIV who thinks that they're going to die still or thinks they can still transmit it or life is going to be completely altered. Especially globally, I mean, the amount of education and stigma is on another level. And then someone who's negative, I mean, the stigma is very prevalent. Yeah, well, you know, I think people just need to work on themselves and you know, whether that's with counseling or whatever and educate themselves as best they can seek out information and so that hopefully they won't change how they feel about that over time. And the HIV community is quite supportive. You know, I still I still very much feel connected to the HIV positive community. I don't think that'll ever change for me. It's part of who I am. Exactly, I agree. Has been more than half of my life. So it takes a little initiative on the part of someone living with HIV too. But the resources are especially with Internet and social media, even if you're living somewhere where you don't have local community based organizations. There's so much online. There's so many resources. It does take a little initiative, but it's there. Before we wrap this up, is there anything you'd like to share or talk about? Well, I want to get more involved in my social media accounts. I'm not not the greatest person on the computer, but I have a Facebook page. I need one to find someone to help me with that. You know, I like to do Twitter and X and Instagram. Is your Facebook page, is that public? And so I don't know how to make it. I wanted to make it like a public figure type page. And I don't know how to do that. It's just, I've got my own personal page and then I created a new one with City of Hope. We'll connect after this, and I'll see if I can help you with that. Okay, okay. Because I have one. Okay. Because I'm getting so many friend requests, and of course I have no idea who anyone is. It's helpful to separate the personal from the... Yeah. So, okay, so I'll put a link in the description box below to that once we get that sorted. So I can hopefully drive some people to your page. Okay, great. Okay, that's it. Thank you, Paul, for being so open and generous with your time and your energy and sharing a little bit about your personal life. You know, it may seem trivial to talk about some of your personal things, but I think there are so many people, I've learned who watch this and they don't have that at all. And their life, and for them it's like gold to be able to feel connected to you and to me and to all the research and science that's going on in the world. So thank you for that. Well, you're very welcome. I feel like I'm honoring to be doing this. Yeah, everyone else keep an eye out as I'm going to be interviewing Mark Franke, the Dusseldorf patient as well. I'll put up a card here as soon as that video is available. And you may also watch my previous interview with Adam Castille, the London patient. I'll put up a card here to that as well so you can watch that. To everyone on the other side of the screen, thank you so much for watching. Drop your thoughts, comments, questions below. I'm happy to follow up. Like this video if you liked it. Subscribe if you haven't already. Hit that bell so you get a notification every time a new video comes out. And please share this with anyone who might find value in this content. That's the best way that you can support me and my channel. Until next time. Cheers.