Subscribe to The Podcast by KevinMD. Watch on YouTube. Catch up on old episodes!

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.

Partner with me on the KevinMD platform. With over three million monthly readers and half a million social media followers, I give you direct access to the doctors and patients who matter most. Whether you need a sponsored article, email campaign, video interview, or a spot right here on the podcast, I offer the trusted space your brand deserves to be heard. Let’s work together to tell your story.

PARTNER WITH KEVINMD → https://kevinmd.com/influencer

SUBSCRIBE TO THE PODCAST → https://www.kevinmd.com/podcast

RECOMMENDED BY KEVINMD → https://www.kevinmd.com/recommended

Transcript

Kevin Pho: Hi. 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. It is great to see you.

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

Janet A. Jokela: When everything was unfolding around World AIDS Day, which was December 1, it got me thinking. I asked myself: What is the significance of World AIDS Day? It made me think about my own experiences from when I was a medical student through now and just how significant it had been for my patients and for me. So that is what I was reflecting on, including a number of these different patient interactions.

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

Janet A. Jokela: I will do that, Kevin. I tell you, it makes me a little teary-eyed thinking about all of this. It was such a profound time. In medical school around that time, it was all in the news. We were hearing all these horrible things about young people dying. We did not know how it was transmitted or what was going on. People were overtly discriminated against. It was just so sad. It was tragic.

As a medical student, I remember rounding with the team. We came to the patient’s door, and we were in the hallway. The attending turned to me and said: “Well, you don’t have to go in the room if you don’t want to.” I thought to myself, “Whatever. What is this?”

This patient had pneumonia. In retrospect, I am sure it was *Pneumocystis*. Remember, people did not know how any of this was transmitted. We put on gowns, little booties, caps on our heads, gloves, and masks. It was like we were going into the OR. We walked into the room and stood about ten feet away from the bed. That is about all I remember. In retrospect, I realize how hard we were working to protect ourselves because we did not know exactly what this person had or if we might all walk out infected. That was weird, but that is where we were at that time. There was so much unknown about HIV and AIDS back in the 1980s.

Kevin Pho: In your article, you talk about being instructed to tell a dialysis patient that he had AIDS all by yourself. Tell us more about that. What happened there?

Janet A. Jokela: Things were early on, and I will not share the name of the institution where this happened. I was doing a rotation, and it was a nephrology rotation. Dialysis patients at that time were at very high risk of getting infected with all the exposure to blood products. The test was done, and the patient was positive. My attending just turned to me and said: “Just please go in and tell this patient that they’re positive.”

I was a shy, trusting, and quiet medical student. I did as I was told. I walked in and told this patient. He knew exactly what I was talking about. His eyes bugged open, and he looked at me with shock. He more or less screamed. Then he abruptly ran out of the room.

I was sick to my stomach. It is hard to think about even today. What were we doing at that time? In retrospect, I wish I had spoken up and said, “No, I prefer to have someone with me.” That did not happen. It was horrible for this poor patient.

Kevin Pho: How did that traumatic memory influence how you teach medical students today?

Janet A. Jokela: That is a great question. Let me tell you, this whole HIV thing motivated me to eventually pursue infectious diseases. It makes me teary-eyed because it was so wrong. It was wrong that these people were discriminated against because of an infection they had. It struck a chord in me that I wanted to serve these patients and take care of people who needed compassion, empathy, and care. There are people who just want to do that, and it really moved me.

With medical students today, it has informed how I interact with them. It has helped shape me into a student advocate and a resident advocate. We do not put students or residents in situations like that. We have their back because these learners are vulnerable. It is important for us to protect them.

Kevin Pho: Today, we have so many effective medicines against HIV and AIDS. When I was reading your story, you were talking about some patients that declined rapidly before there were any treatments. I was not there at the time, but it was such a devastating disease before we had these treatments.

Janet A. Jokela: Absolutely. I was thinking back to my days in residency at Boston City Hospital. I remember counting at the time, and about 25 percent of our patients at any given time had HIV/AIDS. Typically, they had advanced HIV/AIDS. These were people with *Pneumocystis*, cryptococcal meningitis, or disseminated *Mycobacterium avium* infection.

As a young resident in my late 20s or early 30s, I saw patients who were our age. We were seeing people die of this brand new, ugly, and horrible infection. There is one patient I wrote about in the article. I cared for this woman in the hospital. Later, she came back in. She recognized me, but when I looked in her room, I did not really recognize her. I saw her name and we conversed a little bit, but I could not bring myself to remember her except through her eyes. I thought, “OK, there’s Julie.” Aside from that, she had advanced disseminated *Mycobacterium avium* complex infection. She died a week later. It was absolutely tragic.

Kevin Pho: In your article, you talk about Dr. 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: There is a lot of wonderful information online if we search for it. Regarding our former Surgeon General, C. Everett Koop, there was apparently controversy early on about the fact that he did not speak out enough. Later on towards the end of his term, he was speaking out forcefully. There are some lovely quotes you can find where he says: “We don’t have treatment. We don’t have a vaccine. All we have today is education.” We had to educate people so they could protect themselves. He said, “I’m the surgeon general of everybody.” That was a powerful and important statement.

Tony Fauci was vilified early on because he was at the NIH, and people felt like he was not doing enough. The activist patient groups felt like he was not doing enough to get patients into trials or get new drugs out. He did some radical things at that time. He started meeting with the HIV activist groups. He is absolutely a hero. He was able to expand access to the parallel track of clinical trials and push through to make new drugs available to people. That was tremendous.

Another thing with Tony Fauci is that he was the brainchild behind PEPFAR. He worked with a team and President Bush back at that time to put this all together and get it out. He is a living hero.

Kevin Pho: For those who are not familiar with what PEPFAR is, tell us what that is about.

Janet A. Jokela: That is the global program on HIV. The United States poured a ton of money into it to expand access to treatments all over the world. It has been credited with saving millions of lives and preventing millions of infections around the world. It has been hugely successful. It has probably been the largest program in the world dedicated to just one disease. It has been 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: There have been a number of them, and so many people have been involved. One of the biggest breakthroughs was with protease inhibitors in the mid-1990s. Suddenly, we had a cocktail to give patients to manage their infection. That was huge. Trip Gulick is a colleague of mine in New York City who was leading the trials at that time. It was fabulous news and a real game changer.

We have to remember that while people like Trip were leading those trials, it was the patients involved in these trials who made that information available to us. We have to thank these patients who served the world in this way.

There have been so many advancements since that time. The whole concept of U=U, or “undetectable equals untransmittable,” is a huge concept. This means that if someone’s viral load is suppressed for at least six months, they cannot transmit the virus. That was a real game changer as well. Closely tied to that is the idea that if someone is undetectable, they cannot transmit the virus, which is treatment as prevention. That concept was really important for us as caregivers and for patients.

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

Janet A. Jokela: Fingers crossed with all of this because so much of it depends on federal funding for studies, treatments, and studying vulnerable populations. It has been dependent forever on federal funding, so we will see where all that goes.

That said, there have been some exciting developments in injectables in terms of preventing HIV acquisition. That is also a game changer. Someone may get a periodic shot and be protected against HIV infection. There has been some exciting work going on related to HIV vaccines in parallel with all of this. We have also learned a lot over the years about side effects with antivirals. We are in a better place with all of that and continue to move to simpler regimens. We know that they can be effective with fewer side effects than before.

The goal is to end the pandemic. We want to decrease the number of infections and get it as close to zero as possible.

Kevin Pho: We are talking to Janet 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 will end with some take-home messages that you want to leave with the KevinMD audience.

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

In all these different capacities, we uphold our oath. Our oath is to take care of our patients no matter what. We must do so humbly, meet them where they are, and do the best we can to take care of them to the best of our ability.

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

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