Transcript has been lightly edited for clarity and readability.
RyLee Curtis: Hey, everybody! Welcome to the show! This is Communivation, where community health meets healthcare delivery innovation. My name is RyLee Curtis, and I am director of community engagement for University of Utah Health. I am joined here with my co-host, Peter Weir.
Peter Weir: Hi, everybody. I am Peter Weir. I am executive medical director of population health at the University of Utah. And I'm excited to be a part of this podcast. The purpose of this show is to bring together the innovative programs that are happening at the University of Utah that are specifically looking at how we improve the delivery of medical care. And then we want to look at what impact that is to our communities. And we want both of those voices here simultaneously. So, what you're going to hear is that voice from the community and the voice on the healthcare delivery side.
PW: We want this podcast to be informal. This is not meant to be a grand rounds presentation; it's not meant to be a formal medical presentation. You're going to hear, hopefully, a very conversational tone and more of a discussion format. We also are not going to be editing this heavily, so you're going to hear people tripping on their words sometimes and going back on things, and we hope that's okay with you, and we also hope that makes the conversation just sound more authentic and real. Lastly, we want your feedback. Our emails will be available for you to write us directly. And what we'd like to hear from you is: How is the show going? What do you like? What do you not like? What topics do you think we should cover that would be of interest to you?
RC: We have a great topic for you all today. We're covering preventing and treating HIV/AIDS in Utah. We had amazings guest, Dr. Adam Spivak, who is the co-founder of Utah's only free HIV prevention clinic, and an amazing storyteller. And we also had Ahmer Afroz, who's the Executive Director of the Utah AIDS Foundation, and you can clearly hear his passion come through as he talks about HIV/AIDS. We covered everything, from the origin of HIV/AIDS, the current state of HIV/AIDS in Utah, what it looks like to work on community health in a conservative state, and we closed it out with the future state of HIV/AIDS in Utah and where we're headed.
PW: And I'm going to have to give a couple teasers cause this conversation was fun. You're going to hear some cool stories like the origin of HIV and how it started in chimps in Africa, and how it got into humans, which I think is a fascinating story. You're also going to hear some insider politics about how things work in Utah. And you're going to hear about an interesting and comical story that is known as condomgate, and we're going to go over that story as a microcosm for how things are dealt with at a community health level here in the State of Utah. So, you guys are going to really enjoy this. We hope you stick around and listen to the entire conversation.
RC: It was a great conversation, and it was so compelling that we went over, and we're turning this into two parts. So, what you're going to hear now is part one, and we hope you enjoy.
RC: I have a wonderful friend with me here today, Ahmer Afroz, who is the Executive Director of the Utah AIDS Foundation. I have known Ahmer for I think about two years now. I was on the selection committee because I'm on the Board of Directors for UAF, and Ahmer just blew us away with his vision for Utah AIDS Foundation. So Ahmer, take it away.
Ahmer Afroz: Like RyLee said, I'm the Executive Director of Utah AIDS Foundation. I've been in HIV prevention, treatment and care for about a decade now, and got started at the Utah AIDS Foundation as a volunteer and intern. Ended up going to grad school, switching my major because of my experience at Utah AIDS Foundation. Went to grad school in Boston and worked in HIV prevention and research there. But really wanted to take that back to Utah and take a lot of those advanced prevention tools into a space like Utah. So, I was lucky to come back to Utah with the State Health Department first, and then Utah AIDS Foundation now, which has been a lovely home.
PW: I'll introduce Adam here. Adam and I met about a year-and-a-half ago, and I was really interested in his PrEP Clinic, and we're going to get into that in more detail later. When we were talking about topics to go over for this podcast, this rose to the top very quickly. So, Adam, do you want to give just a quick brief bio of who you are and where you come from?
Adam Spivak: I'm a physician at the University of Utah. I'm originally from Baltimore, Maryland, and I trained there at University of Maryland for medical school and at Johns Hopkins for my residency and fellowship in infectious diseases. My wife, Emily, and I came out here 10 years ago or so, looking for jobs, and she's also an infectious disease trained physician. And we've been here ever since, and we absolutely love it here. So, I'm thrilled to be on the podcast today. Thanks for the invitation.
PW: And I read, it was interesting to read that Ahmer has spent time at Hopkins as well, so you two guys have some similar education crossover there. So, let's start with... That's right, right, Ahmer? And I'm not making that up?
AA: Yes, it is, sorry, yeah.
PW: Let's start with just for both of you, to ask just a couple basic questions. What got you interested in working in HIV/AIDS, the topic? And Ahmer, do you want to start?
AA: Yeah. So, I have an interesting story. I went to my first ever Pride here in Salt Lake. I was born and raised in Utah, and the Utah AIDS Foundation was there passing out condoms. And I thought it was the most absurd thing. Honestly, I think it was my first time ever seeing a condom, which was an interesting thing, not having sex education in Utah schools. And I was pre-dental at Westminster College at the time, and I remember just wanting to get involved at the Utah AIDS Foundation and started volunteering and really loved it. And I just had a one very particular moment that changed my entire perspective of what it meant to be in the medical system or public health, and that defined my trajectory more into public health and really, specifically, to focus on HIV for my career.
RC: Do you miss the teeth, though?
AA: No, no, it was a good time, good experience. The clinical experience was nice to apply to clinical HIV research.
PW: And Adam, how about you? What do you think led you to work with HIV/AIDS patients?
AS: My family. My father's a physician, and I always admired what he did as I learned more about it growing up. And so, in college, I was an English major, but I always wanted to go into medicine, so managed to combine those two things. And then after college, I spent a year abroad and I wanted to get away a little bit from academia and whatnot, and I traveled to South America, did some volunteer work, and got really intrigued by how much you could do to help other people, particularly in the realm of infectious diseases. And how places, particularly outside of the West, outside the United States are so deeply affected by conditions that we can treat, that we take for granted, that we can vaccinate against. So, I'd thought I would have sort of an overseas internationally focused career in infectious diseases.
AS: And then I moved back to Baltimore to go to medical school, and I moved downtown to University of Maryland, which is about three miles from where I grew up and an entirely different world. And it became quickly apparent to a sheltered and privileged kid like myself that I didn't need to leave home to help people and find people that were in need. And at the time in the late '90s and early 2000s, there's no question that a disease that was affecting the most young, healthy people was HIV, and that, unfortunately, remains true, and so it became a real focus for me.
PW: Yeah, that's a great story. I think that's something I see often here, locally. There's a real appeal to go to other parts of the world, but there's plenty of pain and suffering that we have in our local environment and communities. The next thing I want to do, just a little bit more introduction into you both, is for you guys just to relate a clinical situation or a story or just some person or a patient that was impactful for you. We don't have to get into the detail, of course. But what was that? And how did it resonate with you? And why does it sort of stick with you? Ahmer?
AA: The first story I can remember, which is what really got me into HIV, and RyLee has heard this story in my interview, but I was at the Utah AIDS Foundation, running the lab for doing rapid testing, and I had a patient come through, very nervous, asking me all these questions, so I'm just answering them. And one question he had specifically was about the test and reading, what one line meant and what two lines meant. He said, "So two lines is bad," and I always remember every aspect... I could remember everything about him, everything we talked about, everything I said, and I remember saying, "Two lines isn't bad, it's just a different path." And that was the first positive patient I... I'm going to try not to tear up, the first positive patient that I had tested, and I just remember really sitting there and thinking, again, as Adam said, sitting in this privileged place of the US and thinking, "How did we fail this person?" And HIV is so preventable, and we sit from that angle and thinking, "How did we fail this person? And what needs to change?"
AA: And so really, that got me into public health. And then what really solidified that is, again, another career-defining moment is I used to do the investigations in the prison here. And so, this is what really got me to stay in Utah and pursue my doctorate at Hopkins, was this individual testing positive, and going in and realizing that this was his first contact with someone who was treating him as a person and understanding the context of what it was to be in the closet in Utah and not having sex education in Utah, and understanding the intersections of substance abuse and HIV, and all those complex things. And that's when I just realized I needed to stay here, but also wanted more education and wanted every door to be opened to be able to do everything and to change. And it sounds corny, but I just really wanted to make systematic changes.
PW: Yeah, I love that story. I love your response.
PW: "It's not bad; it's a different path." That's powerful. I also love what you said, I want to bookmark it for later in our conversation, this concept of "a new infection represents a failure." And I love that thinking like, "How do we think at a systems level to eliminate new infections?" And we're going to get into this in a deeper level in a bit.
RC: I'm going to bookmark something else as well. [chuckle] So...
PW: I bookmark a lot. [chuckle]
RC: You talked a lot about the lack of sex education and access in Utah, and that's something that we wanted to touch on, I think, towards the end of this podcast. But just how do you deal with these very difficult issues in such a conservative state? So, we'll just stick a pin on that one as well, Ahmer, but I think that you're hitting the nail on the head there.
PW: And then how about you, Adam, a memorable situation that really has stuck with you?
AS: Sure, yeah, no, appreciate that question. I've had the privilege of caring for people living with HIV for almost two decades now, so I've a lot of stories that I carry on with me that are inspiring and that I don't forget. Just sitting here, I was remembering a patient I saw early on in my fellowship training. He was an older guy in Baltimore, and gruff and didn't ever have a whole lot to say for himself 'til one day, I got him to open and tell me his whole story. But I always remember that when I would greet him, I'd come in the room and shake his hand, which I... Handshakes, I think, are dead now in COVID, but that's what we did in the beforetime, we shook hands, and I would say, "How are you doing?" And his answer always was the same, and it feels a little bit like a dad joke, but he would say, "Well, I'm getting older, but it's better than the alternative." And that was about as much the longest sentence that I could ever get out of him on most of our visits.
AS: But one day, I said something or he... Something triggered where he told me a bit more about his story. And his story was that he was one of the first people diagnosed with HIV/AIDS in Baltimore in the early '80s. And he named-checked his physicians, and they were the biggest names in the early days of the HIV epidemic in terms of people conducting research and trying to figure out what this was. And that didn't mean a lot to him, but what mattered was that, to him, was that these folks were the cutting edge. And what they could tell him within a year or two of his diagnosis of AIDS was that he had very little time left to live, and that it was time for him to put a will together and figure out what he was going to do with his belongings, he wasn't working, and that his life was about to end.
AS: And what happened next was tragic and horrifying, and that is that there was a WHO Convention in Geneva in the mid-80s, and there was a small plane taking a bunch of WHO and American-European physicians to this meeting, and it crashed in the Alps and all the physicians died onboard. And onboard were his physicians. And so, the same folks that had delivered this diagnosis cared for him, but also had told him that, "You're going to die." He came to clinic one day, and as he told me, he said, "I was there, and they weren't." And it took a lot. It was a long time, it was a year, caring for him before he opened up about that, and what it meant to him to walk into that clinic every day. And that was early 2000s, there's 20 years that he lived with that.
PW: Yeah, yeah.
AS: And so, what came off to me, initially, as sort of a brisk, "I'm getting older, but it's better than the alternative," he really lived... He was living a life that he was told he would never have by people who died tragically. So, there's obviously an irony in that, but it spoke to an era that I was just a child and an adolescent during... When this was a death sentence for people. And so, there's many, many stories I could tell about people who unfortunately didn't have the opportunity to get older because of this disease, but I think that's where I'd leave it.
PW: Okay, great stories. The stories are something that RyLee and I love, and so we really... We want to make this podcast all about stories, and I think these narratives are the things that really stick with us as humans. Okay, so I want to just take a step back and I want to start on just the beginnings. Let's just level set for everyone that's listening to this podcast. And I want to go over the basics about HIV/AIDS. And so, anybody listening to this podcast, no matter what your medical education is, it doesn't matter. I think for anybody, any human, this will be an interesting and fun time to listen to... Maybe not fun, but it'll be interesting. [chuckle] So let's just start the basics. And Ahmer and Adam, either one of you on these questions, you guys feel free to pick them apart. So, let's just start with a very basic one: How does a person get HIV?
AA: Adam, I feel like the doctor should be answering these questions.
AS: Oh, I think you're well... Very, very skilled. I'll just, HIV stands for Human Immunodeficiency Virus. It's, by and large, a sexually transmitted disease, but it transmits through blood as well. Something that I'll share with you that I asked the medical students; now, it was Zoom and they don't like to speak up, but nobody got the right answer, so 100 some medical students. I said, "What's the most prevalent way... What's the most likely way to acquire HIV in the world today, or ever?" There was a bunch of answers, and they were all wrong, okay. But the answer is heterosexual sex. And the point I was making, and I didn't feel like I had to say it out loud to them, was that the disease does not discriminate. People discriminate, but the disease does not discriminate. In the United States, in Europe, men who have sex with men are at risk. Anyone, regardless of gender or sexual identity, whose sex partner has HIV is potentially at risk. People who inject drugs are at risk.
RC: So is that, is heterosexual sex the way that... Is that true across the United States, or... Because in my mind, I'm thinking in third-world countries, potentially, or in under-resourced countries, that's the most prevalent, but that might be my...
AS: Right. Yeah, no, that's true, that's true. And this has to do with it not being a, I don't want to say "widespread." Or if you asked Tony Fauci, he wouldn't say that HIV is a pandemic, in the way that coronavirus is a pandemic, meaning that we are all equally at risk of acquiring the disease. Risk depends on where you are, let's just say. And so, the hardest-hit area in Sub-Saharan Africa has over 25 million people with HIV.
AS: The most prevalent risk factor is heterosexual sex. And as I said, in the United States and in Europe, in areas that have a much lower incidence of the disease, the risk groups differ. So here, the risk groups are men who have sex with men, people who inject drugs. And that has to do with, I think, a lot of the epidemiologic factors about how the disease spreads, a lot of which are idiosyncratic, and I'm not going to bore you with all those details. I don't think anyone fully understands why that is. But it certainly has fed a stigma around the disease, and that's partly why I like to make that point early on when we talk about it being a sexually transmitted disease. It is a sexually transmitted disease, and there's a period at the end of that sentence.
PW: Okay, and then, and again, Adam, Ahmer, how does an HIV infection lead to AIDS? What are the basics there?
AA: I think one thing to know is I think a lot of people, the instinct is to say AIDS. But AIDS is a clinical stage of HIV and the fourth... Adam, I'm looking to you, correct me, fourth stage. And really, it's just a clinical diagnosis marked by a CD4 count of less than 200.
RC: And what is CD4?
AA: Adam, you can explain this far better than I do.
RC: We promised that you didn't have to have a medical degree to understand this stuff. [chuckle]
PW: That's right. No, we did, we did.
RC: That's why I keep asking these questions.
PW: RyLee is keeping us on this.
AS: Sure. No, it's a great question. So, HIV is a virus. What it does in the human body is it infects a very specific cell, and it's a cell called a T cell, and even more specific than that, it is a cell that expresses a little flag on the surface called CD4. And that's the way the virus gets into this cell, the way the virus identifies this cell, is it has CD4 on the surface. So, we use a lot of jargon in medicine, we like to use a lot of jargon. A CD4-positive T cell is the target of this disease, and it's worth pointing out that the destruction of that single cell type in the body defines the disease. You lose those T cells, and you progress to AIDS, as Ahmer said, and to death. And that is the case with 99.9% of people living with HIV. If they go untreated, those T cells will eventually all get chewed up, they will not have an immune system to protect them, and they'll die of AIDS.
AS: The fact that we know that much [about T cells] is because of the disease. And it's worth pointing out that this disease, if you go back to the early literature on immunology or on the early days of AIDS, people did not know much about T cells, and this is what you could term a natural experiment. What if there was a virus that took out one single cell in the body? Well, we're going to learn if that cell is important or not, and it turns out to be incredibly important. Physicians like Tony Fauci and others that have been in this since the beginning, they have seen this evolution about how much the virus, frankly, has taught us about human immunology, but it's come at an incalculable human cost.
PW: And let's jump into another interesting aspect. We talked about this a little bit before the podcast with Adam here, which was where HIV came from. And I find it really fascinating that we're dealing right now with this COVID pandemic, which we all know came from animals to humans, that made that jump in what's called a zoonotic infection. I don't know if it was definitively determined if it was a bat or what animal it was for the SARS-CoV-2 virus. But Adam, if you would just briefly tell us a little bit about how HIV made the leap from monkeys and chimps to humans.
AS: Yeah, no, it's a fascinating story, and I'll try to keep it brief. But you're right, that there is a parallel sister virus known as SIV, which is Simian Immunodeficiency Virus that is very, very prevalent among chimpanzees in Africa. And chimps are not monkeys; they're more evolved and they're our closest living relative, the closest living relative to Homo sapiens. And these are the animals that Jane Goodall has done such incredible work with, and been able to show how human they are, even though we draw a line. But when it comes to viruses, to infectious diseases, they jump and certainly, HIV was not unique in that regard, and we're all living through the consequences of yet another zoonosis that's jumped into humans.
AS: The brief story is that chimps in Central Africa, when work has been done to look at how prevalent SIV is among them, there are groups of chimps in whom all the chimps have SIV, 100%. None of them are sick. And what people think is that they are the descendants of an ancient SIV plague that affected chimps, and the ones that survived and were able to continue, they didn't have antiretroviral therapy, they didn't have the University of Utah Health, but the ones that survived, survived and continued, but they passed on the virus. At least that's the theory in comparative medicine circles. How did it cross over to humans? Chimps are hunted for meat, for bush meat in some areas of the Congo, and have been, for as long as people have lived there. And the best evidence we have, and a lot of this is both anthropologic and cultural and social and genetic information, seems to suggest that the virus jumped from a chimp, which was hunted, butchered, and sold in a rural market, into humans. And at that point, a few people had SIV.
AS: The virus took over from there, it's a virus with nine genes, we have over 30,000, but it does a pretty good job. And it managed, with those nine genes, to beat our immune system and find a way to spread human to human. And at that point, it became HIV. In the mid-20th century, there was enormous political upheaval in Africa and many of the European countries that were colonizing various areas, in particular, the Belgian Congo, or... Belgium pulled out, the British pulled out of Kenya. But all these things were happening at once. A lot of African countries were becoming independent. And because of the social unrest and the political upheaval that was happening at that time, in addition to all the resource extraction that the Belgians were doing in the Congo, there was enormous population flux, much, much more than there ever had been. And it happened right at the time when this new disease had shown up. Whole books have been written about that era, but I'll stop there.
PW: That's fascinating. And Adam, it turns out, is an expert storyteller. [chuckle] That's an impressive story. I've been reading a lot about HIV/AIDS to prepare for this show, and I've been learning a lot and filling in the gaps that I had, and so it's fun for me to have both of you guys here and hear your thoughts. So, what I want to do is I'm going to segue to the history of HIV/AIDS in the US and Utah, specifically. I grew up right near San Francisco, and at 11 years old in 1981, which makes me 50, this news story broke, and it was a big, big deal, and it was right near our backyard. And so, I feel like it really lives with me, the whole HIV/AIDS epidemic. So Ahmer, do you want to take this one? How have things changed since the 1980s for people with HIV/AIDS? Maybe go through a brief evolution of where we are today.
AA: Yeah, so in some respects, it's night and day; in some respects, I think it's right where we were. I think one thing I forgot to mention, looking at the difference between HIV and AIDS, is also the clinical opportunistic infection markers, which is a lot of what people think of with HIV and AIDS during that time. So, I think it's... I think just that speaks to the advancements. So, we're not... There are still many people who are diagnosed with AIDS at the time of also being diagnosed with HIV. But when you look at the initial '80s, what they were seeing, obviously, was people having these opportunistic infections in a large influx. And so, things like Kaposi’s sarcoma, which are rare conditions, were then very common.
AA: I think when we're looking at then to now, I think the fact that a lot of those are manageable, the fact that we have a slew of medications, the fact that HIV is not a death sentence, the fact that we have a medication and biomedical interventions for prevention is night and day. But I think the other flip side to that is if we're looking at stigma, and if we're looking at limited resources, and we're looking at prioritization of prevention, treatment, and care, in some respects, we're right where we were. I think, particularly, within stigma, socially and in medical systems, that's such a huge thing. And the fact that people don't necessarily see those clinical symptoms so commonly, HIV is on the back burner.
AA: But you know, one thing to know is in Utah, we've had the same consistent average of 120 new cases in Utah per year. So, it's interesting to think that that hasn't changed when other states and larger areas... You mentioned San Francisco, San Francisco, they cut their new infections by half, and Utah has stayed the same in a decade. So, it just speaks to there's just... It's at a standstill in some states, in some places. We still look at the South, and a huge chunk of new infections are coming out of the South, and a lot of that is speaking to being stuck in that initial mentality and stuck in the stigma.
RC: If you could, theorize why it is that Utah is staying stagnant. Is it because of the lack of education? Is it because of stigma? What would you say is the reason?
AA: Yeah. So, education is a huge thing, but I think that's not the only piece. I think when we're looking at getting to zero new HIV infections, the fact that we don't have universal healthcare or accessible healthcare for everyone is such a barrier. I think that's one thing, and looking... So as a millennial myself, again, looking at our new infections, we're seeing a huge rate of increase, and that's been for the last decade or so, of 15-to-24-year-olds in new infections. And so, it speaks a little bit, culturally, to the fact that HIV is not so mainstream. People feel like it's not such a big deal, or a lot of people also feel like that there's a cure for HIV.
AA: Magic Johnson was fantastic for HIV. But at the same time, you had a very wealthy individual who had the world's best physicians and every opportunity at his fingertips to take care of his condition. And so, from that, while we got some exposure to HIV, you also had a lot of people, particularly in my generation in that millennial group, who didn't think it was a problem. We grew up thinking that it wasn't a big deal, we didn't see... And I have to acknowledge my privilege working in HIV, and don't kill me for this, I was born in '91, but... So not being part of that is kind of you don't see it tangibly and people don't have that same experience. So, I think it's education, it's our medical system within the US, it's the fear of not having these conversations, and then it's just the lack of understanding that it's still very much a real problem.
PW: Yeah, and again, that brings up that theme that we bookmarked that every new infection you could think of, in a sense, is a failure, a failure at some level. And I want to get into that with your work with the Utah AIDS Foundation and some of the work Adam's doing with the PrEP Clinic. So, I think this is good timing for you to go into: What is the Utah AIDS Foundation? What's it all about? And what's your vision as a foundation? And I've looked at the website and I would recommend anyone listening, check it out, because it does a wonderful job explaining exactly what it does, what services are available. It lays it all out there beautifully. You guys did a wonderful job with that. But go ahead, Ahmer, and just give us a high-level summary.
AA: Yeah, so Utah AIDS Foundation started in 1985. The government and State Health Department refused to do anything with those first, I believe, 17 cases of HIV. And so, we are a grassroots organization. It started in someone's living room and really, it was... There was no help or support, which is the same story of AIDS service organizations across the United States. Government said no, and people were dying. And so really, at that time, it was end-of-life care, it was just general support, and it was prevention.
AA: It's interesting, particularly, to think about that and COVID. So, a lot of those early, even the epidemiology of HIV and stuff, all of that then translated into COVID-19. So, you see a lot of the big major players within HIV were pulled to COVID-19, which is interesting to see. But UAF expanded from there. So, any services, getting people to medical appointments, getting people into care, and then food, and end-of-life care. And since then, obviously, we've expanded quite a bit, and our focus is vastly different, and we like to say we've gone from surviving to thriving. So, looking at how we can ensure people living with HIV and people who are at risk for acquiring HIV or other STIs, in general, have all the access to education, medical care or treatment that they need. So, we have case management services for people living with HIV, we have an on-site food bank for people living with HIV as well. We have a full test site, which is all volunteer run, doing HIV and STI, comprehensive STI testing.
AA: And we're starting some new things. We're starting a mental health program here in the next couple of months. So just trying to see where the gaps are in Utah, and frankly, there are quite a few gaps for people living with HIV, and how we might be able to adapt. And not only HIV. So, speaking to your question about the future, I think we'll continue, obviously, to have our roots within HIV and fight to have a future where potentially, hopefully, that's not a huge factor. But STIs will still be there, and STI treatment, education, prevention is still lacking in Utah. So that's where we're going.
AA: The Ryan White Federal support for HIV, I think it's, I'm forgetting the exact number now, but I think it's 70 or more, 70% or 80% of people in that program are now above 50. So, what does it look like to live with HIV and age? I think there's quite a bit for us to do. I think a lot of people ask the question: What will UAF do? And you're working towards this goal, but I think the reality is there's still so much to do for people living with HIV, and then also on the side of general sexual health.
PW: Okay, that was excellent. And then you mentioned Ryan White. Just for our listeners, I think probably people know that name, but tell us, briefly, who Ryan White is, and then how that's related to funding.
AA: Yeah, so early '90s, Ryan White was a child who was diagnosed with HIV. He acquired HIV through a blood transfusion; I believe he had hemophilia. And so, he did end up passing away from HIV, but both him and his family did a lot of work within the field, which really changed the face of HIV. The sad reality is the problem with HIV in general is people were only associating it with gay men. And so, you didn't have a lot of acknowledgement of it. So, Ryan White really was the face to push HIV forward because people weren't willing to do that for the LGBTQ+ community, but a lot of positive things came out of that. So now, kind of namesake program is the Federal program that funds, specifically, HIV treatment and care services for people living with HIV.
PW: Okay, perfect.
AS: So, can I interject one thing about Ryan White, the Ryan White Act.
PW: Yes, yes, please.
AS: So, it is, it turned 30 in August, so it's about to be 31. And it was the brainchild of the late Ted Kennedy from Massachusetts, Senator for Massachusetts, who spent his career, his latter part of his career, interested in expanding health insurance and availability for all Americans. He was a liberal Democrat, and at least in those days, you didn't get a bill passed unless you had some Rs on board across the aisle. And Ted Kennedy had a very close friend and someone who he worked very closely with, and the Ryan White Act would not have passed without that person. Who was that person? Do you guys know?
PW: Joe Biden.
RC: Is that a Utah tie? I feel like it's a Utah tie.
PW: Is it a Republican? Is it Hatch?
AA: Yes, Hatch.
RC: Is it Orrin Hatch? Yeah.
PW: Yeah, it has to be.
AS: Yeah, Orrin Hatch. So, the reason the Ryan White Act passed is that it had bipartisan support. And the reason it had Republican support is it had support from Orrin Hatch.
PW: Yes, great for...
RC: They also passed CHIP together as well.
RC: Yeah. A little factoid for access to healthcare coverage. [chuckle]
PW: Yeah, that's good. So Ahmer, thank you for describing the Utah AIDS Foundation. And what I found interesting as a physician is that you guys have home testing kits.
PW: And I clearly remember the time when the only way you could order an HIV test was to have the person come back in-person and discuss the results. It was this big deal. And I was really surprised to see that because for me, I think when you learn something the first time, it's hard to change the way you think about it. What's your experience with that, using home testing like that?
AA: That was a fantastic demonstration of UAF's ability to adapt to COVID. We really did have to quickly shut down. And what we're seeing and what all the research is saying globally now is behavior is not changing. And so, I think that's one thing is we do have to acknowledge that and not shame that people are still engaging in behaviors that will put them at risk for acquiring HIV and STIs. So, this was our baby project to be the first in the state and one of the first in the country to do HIV testing, and then through site STI testing. And it's done well. I think it's really helped us expand to some rural clients. What we're seeing, though, is people do ultimately, particularly through UAF, prefer to come in-person, which is interesting. And so, it was important to continually look at the data and get feedback from clients. So, we did have to eventually open. But it's a permanent program at UAF now for anyone and anyone who might... For everyone and anyone who might need it. We've sent them to California as well, people who have had to leave Utah, but still prefer seeking services from Utah and from the Utah AIDS Foundation.
AA: I think it's a smoothly run program, and it's the exact same test that you would get, whether you're coming into UAF or going to your doctors, we send them to the same lab. The HIV test, you do on your own, and then we follow up with everyone. And that's a huge concern when you're doing at-home testing, is that follow-up, and particularly, the linkage to care. And so, we make sure we have a follow-up phone call with everyone who does receive HIV testing to answer any questions, and then also to just go over any results as well.
PW: Yeah, okay.
RC: And just quickly...
RC: You mentioned something that people still want to come in, and I just...
RC: The reason it was called Communivation is because community is such a huge part of this, and that's... I want you to speak to how you're not just a service provider; you're different than a medical provider in that sense because you have that sense of community. And what does that mean for your clients and for your staff?
AA: One of UAF's biggest assets is that we are a safe space, and people know it as a safe space. I think we've been here from the start in Utah. And it does have that community angle, but you're also getting the most up-to-date clinical services. But you do notice that people like to get a lot of sexual health services in more of a community health setting or in a community setting, rather than clinical settings or strictly clinical settings. I think that is a huge part. The other part is they're very familiar with staff and comfortable with staff. They know, just based off the name, that they're coming into, I can't say that enough, but a safe place. They're not going to be judged for anything, for disclosing any of their sexual behaviors, for disclosing drug use, for disclosing their sexual orientation. And so, it's a benefit just having that... The name carries a lot of weight.
AA: And so, I think it's an interesting thing that we will always have to remember, that no matter what's going on in the world, we have to make sure we're adapting and able to be open for clients, which is heart-warming to know, but it's a lot of pressure, also, to know. You're in the middle of a pandemic and you have to think... But it's been a smooth transition, and I think that's the beauty of UAF as well, is you have a small, dedicated team. And so, we are focused on this. Everyone who comes to UAF, it's their life's journey and path coming to fruition. And so that really translatse into the services and the care that people get.
PW: Yeah, I love that, and I really like and appreciate your comments about having a space and a culture that's very non-judgmental so people can feel trusting. I think that trust is hard to earn and quite easy to lose.
PW: Let's flip over to the PrEP Clinic. Why don't you give us a high-level summary of what the PrEP clinic is? And my understanding is you help run the only free PrEP clinic in Utah, in the state. And tell us a little bit about that trusting culture, non-judgmental culture, and what the PrEP Clinic does for patients, or for people, I should say.
RC: What is PrEP? Yeah, yeah, what is PrEP? [chuckle]
PW: And, sorry. Thank you, RyLee. It's great to have that voice in here to check me. But also, if you would discuss PrEP and how that's different than antiretroviral treatment of HIV/AIDS.
AS: Sure, yeah, no, that's a great question. So just touching on HIV treatment and prevention. Since about the mid-90s, we've had a combination of medicines, and people used to talk about a cocktail, which is an interesting analogy. But in any case, we always use these medicines in combo. They're now available as a single-tablet regimen, so one pill once a day with multiple meds in the pills. Regardless, for the past 25 years or so, we've had phenomenal treatment for HIV. For those that have access to treatment and then take it, it's a chronic disease. It's no different than heart disease, diabetes, high cholesterol, diseases that we don't cure, but that we have excellent treatments for, often oral therapies, pills. They keep people out of the hospital, and they live long, healthy lives. And that's true for people living with HIV. And on top of doing well on these meds, they also do not spread HIV, so they really have an enormous number of benefits, which is even more reason why testing for HIV is so important.
AS: Now, since about 2012, we've had a treatment, it's FDA-approved, to prevent HIV infections. It uses two of these meds in folks that may be at high risk for acquiring HIV. They take a daily pill and cut their risk to something very close to zero. Most of the big studies, even after FDA approval, which is interesting, it wasn't just the registrational trials, it was real-world studies showing upwards of 99% efficacy with this treatment, and it's known as pre-exposure prophylaxis, which is a mouthful, so it's gotten shortened to PrEP.
AS: Here's where I want to acknowledge my partner in this, Susana Keeshin, who's a physician at University of Utah. She's pediatric and adult infectious disease trained. And she's just a phenomenal person, a phenomenal physician, and someone I'm just proud to have as a colleague and a friend. And Susana and I have talked for a long time about PrEP and how, just in general, if you look across the globe, nationally, locally, we, meaning physicians, weren't using it. It was approved in 2012 and the uptake was something close to zero. What Susana and I started to recognize as we had more and more folks coming into the clinic, and this is the Infectious Disease Clinic, people who are healthy, HIV-uninfected seeking PrEP. One of the things we noticed, which was interesting, was that Gilead, which is a big pharmaceutical company based in Northern California, manufactures the only two drugs now that are approved for PrEP, is they'll give it away for free. They'll give it away for free under certain conditions: A physician prescribed it who said, "This patient doesn't have insurance, can't afford it."
AS: And I started seeing more and more people coming in the door that wanted to be on PrEP, and I can get it for them, regardless, whether they could afford to pay for it or not. Every now and then, a patient would come in and we'd write a prescription, and they'd go to the pharmacy, and they'd come back, and they’d say, "The pharmacy wants $1,800 for these 30 pills." So, Gilead manufactures the pills, they put them in a bottle, there's always one month's supply, it's 30 pills, and the price tag was $1,800 for 30 pills. And we would jump through the hoops and go through the Gilead Advancing Access program, and lo and behold, that went to zero. I've since learned some interesting statistics, and that is that to manufacture those 30 pills and put them in a bottle and put them on our shelf, it costs Gilead $7. It costs $7.
AS: The two medicines, tenofovir and emtricitabine were discovered through NIH-funded research, which of course, is paid for by you and me, the United States taxpayers. Gilead purchased patents for those drugs, combined them, formulated them, and manufactures them. So, the $1,800 charge for medicines that cost them $7 is infuriating, is the word I would use. I would say unconscionable. I’d come up with some other fancy-sounding adjectives, but it just pisses me off. It makes me angry. In Australia, if I wrote you a prescription for PrEP and I was a physician in Australia and you needed PrEP, it would cost you $8. So, Gilead makes 12% profit, they make $1. Yeah, they cover their costs, and they make $1.
AS: In this country, they charge $1,800, and that's unconscionable. And it deeply bothers me to be a part of a system that's that profit-hungry, and inequitable, and bigoted, and frankly, racist, and stupid. It bothers me to be a cog in that machine, to put it very frankly. And another statistic just that is in my head, so to get it out of my head, for the time being; if you're a gay black man in the South, the United States, your lifetime risk of HIV is what? What do you guys know? Lifetime risk of acquiring HIV for a gay black man in the South in 2021 is one in two, 50% risk.
RC: Oh, my gosh!
PW: Wow! That's stunning.
AS: We put a fancy bloodless term when we talk about social determinants of health, and that's a nice, fancy...
AS: Buzzword. It sounds catchy. It makes me sound empathetic, but also, smart. It's a lot of... It's a combo. That's racism is what that is. That's institutional racism. And how do we define the South? The Civil War? The boundaries are still drawn. These are facts; however you interpret, interpret them in your own way, but they're facts. Anyway, Susana and I talk a lot about social justice, and she's really a role model for me in this regard. Ahmer knows Susana well, and I think would agree with that characterization. She's just phenomenal in many regards. But we talked about that we could access PrEP. We, as physicians, could get it for free for our patients. All we had to do is ask.
AS: And so, we didn't ask so much as we went to leadership, Susana and I, at the U and said, "This is what we want to do." We didn't phrase it as a question, and I should bring it as well that it wasn't just Susana and me. It was a group of medical students that had approached us and said they wanted to do something for the LGBTQ community in Utah. Susana and I had been kicking around this idea. And what we said was, "Gosh, you know, the U has all these clinics, brick-and-mortar buildings, and on weekends, what happens? They turn the lights off, and they lock the door, and they leave. The clinic is still there. It is sitting there; it's not doing anything. So, what if we just turn the lights on? I wear my white coat, I can wear a badge, I work there. It's not going to harm anybody. We'll clean up after ourselves. And let's see what happens, let's give away some meds, give away PrEP."
AS: And that's what we told our Department Chair at the time, Kathy Cooney, that we wanted to open a... Just wanted, "Let us flip on the lights." We went to ARUP, which is our lab, and we said, "Yeah, these labs are kind of expensive. Can you cut us a deal on that?" And they gave us a sizable donation to get started, and they've given us some discounts on the labs, that's still very expensive. But we weren't charging anybody anything; we were just giving away PrEP. And that all sounds well and good, but at some point, you're going to run out of money. And at that point Susana said, "You know, we got to talk to the Department of Health because I think there's a guy there that's really phenomenal, and he may be able to help us." And that was Ahmer Afroz, and this clinic would not exist without Ahmer backing us, putting that contract together. I still remember meeting... What was it? Some meeting at the Utah Museum of Art. Remember that? And you... We were walking in together, and saw Ahmer, "Hey, Ahmer! How are you doing?" And he said, "I think it's going to work; I think it's going to work." And he was pulling strings, and he's never told me the whole story. But he was an enormous part, and I think the clinic would not exist without him.
But we've been doing well. Created a free clinic. We have well over 400 people that we've enrolled in our clinic, all of them have been on PrEP, they are doing great. We haven't charged anyone anything. And we are alive and well due to an ongoing contract that was started by Ahmer at UDOH. And we've managed to survive through COVID as well. That's me talking a lot, sorry.
PW: I love it! No, no, I love it, and love the stories. And I have to say, for the listeners, you now know why I thought Adam would make a great guest. Love the passion, and I love the vision. So, is there another side to that story, Ahmer? Do you have another complementary side to how it...?
RC: How much can you tell?
PW: Alright, folks, that wraps up part one of our conversation. I hope you're enjoying it. We really had a fun time. And part two of this conversation is well worth sticking with. There's a lot of interesting things we discuss. We go over a little bit more of the context and the background of the PrEP Clinic, but we also talk about Ahmer's side of what happened from his perspective in terms of advocating for the PrEP Clinic at a state level. We also dive into condomgate, which is a fascinating controversy that happened here in the State of Utah that I think is a great illustration of how difficult it is to promote community health in a conservative state. And we discuss a very provocative question: Is it possible for us to eradicate new HIV infections in Utah, and potentially, in the US, overall? I hope you'll join us for the conclusion of a very fascinating conversation.
PW: Lastly, I'd like to give a special thanks to Isaac Holyoak for producing and editing Communivation. This podcast is distributed by Accelerate, University of Utah Health's online learning community. Check out their work at www.accelerate.uofuhealth.edu. Communivation is available wherever you get your podcasts. Thanks for listening, and we look forward to seeing you next time.