Personal memories reveal the transformation of HIV care over four decades [PODCAST]

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Professor and senior associate dean of engagement Janet A. Jokela discusses her article “Reflecting on the significance of World AIDS Day from the 1980s to now.” Janet shares harrowing memories from her time as a medical student in the mid-1980s, recalling the fear and stigma that surrounded the early days of the AIDS epidemic. She traces the evolution of treatment from a time of hopelessness to the revolutionary arrival of protease inhibitors and the global impact of PEPFAR. The conversation highlights touching patient stories that illustrate how a diagnosis once considered a death sentence has become a manageable condition, allowing people to live full and service-oriented lives. Join us to honor those lost and celebrate the resilience of the human spirit in the face of a terrifying disease.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at kevinmd.com/podcast. Today, we welcome back Janet A. Jokela, infectious disease physician and former treasurer of the American College of Physicians. Today’s KevinMD article is “Reflecting on the significance of World AIDS Day from the 1980s to now.” Janet, welcome back to the show.

Janet A. Jokela: Thank you so much, Kevin. Great to see you.

Kevin Pho: All right, so tell us what your latest article is about.

Janet A. Jokela: Well, when the whole thing was unfolding around World AIDS Day, which was December 1, it just got me thinking: What is the significance of World AIDS Day? And it made me think about my own experiences since I was a medical student through now and just how significant it had been for my patients and for me. So that’s what I was reflecting on, a number of these different patient interactions and a number of different things which I touched on in the article.

Kevin Pho: All right. So I would love for you to share some stories about your background training. I know that we’ve talked in the past that you’ve trained in Boston at the old Boston City Hospital. In your article, you describe growing up to see your first HIV patient in 1985. So tell us about that moment and how that moment shaped your early understanding of medicine and HIV.

Janet A. Jokela: Will do, Kevin. And I tell you, it makes me a little teary-eyed, actually, thinking about all of this. It was such a profound time. So anyway, in medical school around that time, of course, it was all in the news and all this stuff. We were hearing all these horrible things of young people dying. We didn’t know how it was transmitted and what was going on, and people were really overtly discriminated against. It was just so sad. It was tragic.

At any rate, as a medical student, I remember rounding with the team, and we came to the door, the patient’s door to their room. We were in the hallway, and the attending turned to me and said, “Well, you don’t have to go in the room if you don’t want to.” And it’s like, “Well, whatever. You know what? What is this?” But this patient had pneumonia. In retrospect, I’m sure it was Pneumocystis. But remember, people didn’t know how any of this was transmitted.

So we put on gowns. We put on little booties. It’s like we were going into the OR or something, caps on our heads, gloves, masks, the whole thing. And we walk into the room, and we stood there probably, I don’t know, 10 feet away from the bed at least, all of us, a group of us around the bed. And that’s about all I remember, just in retrospect how hard we were working to protect ourselves because we didn’t know exactly what this person had or if we might all walk out infected. So that was weird in retrospect, of course, but that’s where we were at that time. So it’s just odd.

Kevin Pho: There was so much unknown, of course, about HIV and AIDS back in the ’80s, right? You, in your article, talk about being instructed to tell a dialysis patient that he had AIDS all by yourself. So tell us more about that. What happened there?

Janet A. Jokela: Well, again, things were kind of early on, and I will not share the name of the institution where this happened, of course. But I was doing an away rotation, and it was a nephrology rotation. Dialysis patients certainly at that time were at very high risk of getting infected with all the exposure to blood products and all that stuff.

Well, anyway, this patient, the test was done, and they were positive, and my attending just turned to me and said, “Well, just please go in and tell this patient that they’re positive.” And it’s like, “Oh my goodness. Well, OK.” And again, I was kind of a shy, trusting, kind of quiet medical student. And I did as I was told, and I walked in, and I told this patient that. And he knew exactly what I was talking about, but his eyes just kind of bugged open, and he just looked at me like, “Oh my goodness.” And he more or less screamed, and then he ran out of the room. He just kind of abruptly left the room.

And I was just sick. I was sick to my stomach. And it’s hard to think about, even today. What were we doing at that time? And in retrospect, I wish I had spoken up, said, “No, I really prefer to have someone with me,” or something. But anyway, that didn’t happen, and that’s what happened with this poor patient. It was horrible.

Kevin Pho: And how did that traumatic memory, how does that influence how you teach medical students today?

Janet A. Jokela: Great question. Well, let me tell you, this whole HIV thing, I’m sure that motivated me to eventually pursue infectious diseases. It was just so, again, it makes me teary-eyed. It was so wrong. It was just so wrong that these people were discriminated against because of an infection that they had. I mean, go figure. It’s just craziness.

So at any rate, it just struck a chord in me that I wanted to serve these patients and just take care of these people. They needed compassion, they needed empathy, they needed care, and there are people who just want to do that, and it really moved me.

So at any rate, with medical students today, I’m sure it’s informed how I interact with students. But it really has helped shape me into being a student advocate, a resident advocate, that we don’t put students or residents in situations like that. And we have their back. We have their back. They’re vulnerable. These learners are vulnerable, and it’s important for us to protect them. We need to protect them. So those are just some of my thoughts.

Kevin Pho: Today, we have so many effective medicines against HIV and AIDS. And when I was reading your story, you were talking about some patients that really declined rapidly before there were any treatments. And I wasn’t, of course, there at the time, but it was just such a devastating disease before we had these treatments, right?

Janet A. Jokela: Yeah, absolutely. I was thinking back to my days in residency at Boston City. I’d say I remember counting at the time, about 25 percent of our patients at any given time had HIV/AIDS, and typically advanced HIV/AIDS. So these were people with Pneumocystis or cryptococcal meningitis or disseminated Mycobacterium avium infection, whatever it was. And as a young resident, late twenties, early thirties, in that ballpark, with our fellow residents just graduating from medical school, these patients, many of them were our age. We were seeing people die of an infection, this brand-new, ugly, horrible infection.

And there’s one patient I spoke about or wrote about in the article, this woman who I cared for in the hospital. And then later, she had come back in, and at this time, she saw me, and she recognized me. And I look in her room, and it’s like, “Oh gosh, I don’t really recognize her.” But I saw her name, and we conversed a little bit, but I just could not bring myself to really be able to remember her except through her eyes. It was her eyes. It’s like, “OK, there’s Julie. That’s right.” But aside from that, I just. She had advanced Mycobacterium avium complex infection, disseminated. And she died a week later. It was just tragic. Absolutely tragic.

Kevin Pho: In your article, you talk about Dr. Fauci, Tony Fauci, and Dr. Koop and some of the things at the time that may have been considered controversial. What are some of the things that they did to fight against HIV? What are some of the things that were deemed controversial at the time?

Janet A. Jokela: Sure. And there’s a lot. If we Google it and go look online, there’s a lot of really wonderful information there. So with our former surgeon general, Everett Koop, apparently early on there was controversy about the fact that he didn’t speak out enough. But then later on, towards the end of his term, he was speaking out and speaking forcefully.

And there’s some really lovely quotes that you can find online, but he’s saying, “Look, we don’t have treatment. We don’t have a vaccine. All we have today is education.” We can offer our care and education. So we have to educate people. They have to protect. We have to protect ourselves. People have to protect themselves. He said, “I’m the surgeon general of everybody.” And that was a powerful, important statement.

Tony Fauci, early on, he was vilified at that time too because he was at the NIH, and people felt like he wasn’t doing enough, especially the activist patient groups, felt like he wasn’t doing enough to help get either patients into trials or new drugs out. And he did some, at that time, radical things, but started meeting with the HIV activist groups. And he’s a hero. Absolutely a hero.

But he was able to expand access to what was called the parallel track of clinical trials and also push through, again, and make available these new drugs that weren’t available to people before. And that was tremendous. Absolutely tremendous. Another thing with Tony Fauci, he was the brainchild behind PEPFAR. He worked with the team of President Bush back at that time to put this all together and get this out. And absolutely, he’s absolutely a living hero.

Kevin Pho: And for those who aren’t familiar with what PEPFAR is, tell us what that’s about.

Janet A. Jokela: Right. That’s the global program to end HIV. The United States poured in a ton of money, appropriately, a ton of money to expand access to treatments all over the world. And it’s been credited with saving millions of lives and preventing millions of infections around the world.

So it’s been hugely successful, and it’s been probably the largest program in the world that’s been dedicated to just one disease, and in this case, one infection. And it’s been just hugely successful in terms of saving lives all over the world.

Kevin Pho: As you reflected back on the decades of HIV/AIDS history, what are some of the biggest advancements or breakthroughs during that time that really turned the tide against that virus?

Janet A. Jokela: Oh my goodness. Well, there’s been a number, and there’s been so many people that have been involved to do this. I mean, it’s tremendous. But probably one of the biggest breakthroughs was with protease inhibitors in the mid-’90s. So suddenly, we have a cocktail to use to give patients these antivirals so that their infection can be managed. And that was huge, absolutely huge.

Trip Gulick is a colleague of mine who’s in New York City, and he was the one leading the trials at that time, and it was just fabulous, fabulous news. But that was a real game changer, I think, especially with all these clinical trials that have been going on. We have to remember it was all people like Trip and others, of course, kind of leading those trials, but it was the patients who were involved in these trials that made all the information then available to us. We have to thank these patients who’ve served the world, all of us, in this way.

So that’s one. There have just been so many since that time. The whole concept of undetectable equals untransmittable, that’s a huge concept. So meaning that if someone’s viral load is suppressed, and if it’s been suppressed for at least six months, they cannot transmit the virus. That was a real game changer as well. And closely tied to that is the whole idea that if someone’s undetectable, they can’t, right? They can’t transmit the virus. So of course, that’s treatment as prevention, right? So that concept actually was really important too, not only for all of us as caregivers, but for patients, just huge. So those are a couple that come to mind.

Kevin Pho: So what do we have to look forward to? We’re speaking in January of 2026. What’s on the horizon when it comes to HIV treatment or prevention?

Janet A. Jokela: Good questions. Good questions. Fingers crossed with all of this because so much of it certainly in the past has depended upon federal funding for all of these studies and all of the treatments and studying vulnerable populations and all that. That is so critical. So it is dependent. It has been dependent forever on federal funding. So we’ll see where all that goes.

That said, today, there’s been some exciting developments in injectables in terms of preventing HIV acquisition. I mean, that’s also a game changer. Someone may get a shot, and then they’re protected against HIV infection. So it’s a periodic shot, and they’re protected, and that’s also a game changer. There’s been some exciting work going on related to HIV vaccines, kind of in parallel with all of this. So that remains exciting as well.

And again, I think we’ve also learned a lot about, say, over the years, side effects with the antivirals. So we’re in a better place with all of that, and we continue to move to simpler regimens. We know that in certain populations they can be effective, and simpler regimens and regimens with fewer side effects than what there were before. So those are all really, really good things.

The goal, of course, is to end the pandemic, to decrease the number of infections, to get it as close as possible to zero, if not to zero, as best we can. And fingers crossed on all of that.

Kevin Pho: We’re talking to Janet A. Jokela, former treasurer of the American College of Physicians and infectious disease physician. Today’s KevinMD article is “Reflecting on the significance of World AIDS Day from the 1980s to now.” Janet, as always, we’ll end with some take-home messages they want to leave with the KevinMD audience.

Janet A. Jokela: Yeah, I think especially thinking about our students and residents who are thinking about what they want to do. First, follow your passion. For me, I was compelled to work on behalf of these patients and this patient population, and that’s sustained me throughout my career and in all these different capacities and all these directions.

We uphold our oath. Our oath is to take care of our patients no matter what. And I think to do so humbly, to meet them where they are, and to do the best we can to take care of them to the best of our ability. So there you go.

Kevin Pho: Janet, as always, thank you so much for sharing your stories, time, and insight, and thanks again for coming back on the show.

Janet A. Jokela: Thank you so much, Kevin. Appreciate it.

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