HIV 40th anniversary: An oral history

By Emily Margosian, assistant editor, June 1, 2021

As the world continues to wrestle with the aftershocks of COVID-19, this June marks the 40th anniversary of another deadly virus. Since its first identification in the summer of 1981 — due in part to observations made by dermatologists — an estimated 770,000 people have died from AIDS-related illnesses since the start of the epidemic. 

Health historians and those there at the onset remember the slow national response to the crisis, due in part to heated political and social stigma surrounding the disease — a parallel that bears troubling similarity to the United States’ ongoing COVID containment efforts. 

While HIV and AIDS-related illnesses remain a global concern today, over the past 40 years there has been a successful effort on behalf of the scientific community and grassroots advocates to study, prevent, and treat HIV/AIDS. In honor of these contributions, this month DermWorld speaks with HIV dermatology experts to learn more about their memories of this time, what it was like to care for HIV patients before the introduction of antiretrovirals, and how the specialty responded to the unfolding crisis. 

1970s: HIV strains are estimated to arrive in New York City by 1971, spreading to San Francisco by 1976.

Although HIV did not gain significant traction in the broader scientific community until the early 1980s, murmurings of something unusual had made it onto the radar of Donald Rudikoff, MD, current chief of dermatology at the BronxCare Health System, the decade prior.

“Back in the 1970s, I was actually involved in publishing a letter in the New England Journal of Medicine. I was at St. Vincent’s Hospital as an intern, and I noticed that most of the patients coming into the clinic with hepatitis were gay. Later, when I was at Beth Israel, they had a large methadone clientele — a lot of drug addicts. We noticed that among the patients in the rehab, there was something going on; they were very sick. People thought it maybe was due to something that the drugs were cut with,” said Dr. Rudikoff. “It wasn’t until I started my dermatology residency in 1980 that there was some mention of patients developing Kaposi sarcoma. There was a dermatologist at NYU by the name of Dr. Alvin Friedman-Kien, who was reporting cases.” 

“It was back in 1980 around December; I saw a young man who happened to be gay — an actor who had purple spots on his face and his nose. I thought it might be Kaposi sarcoma, but prior to that I had never seen Kaposi sarcoma in a young person, and very rarely did you ever see the lesions on the face,” recalled Friedman-Kien, MD, in DermWorld’s 2016 feature story, ‘Staying the course.’ 

According to Dr. Friedman-Kien, the observation was particularly noteworthy due to its near-rarity in young, otherwise healthy individuals.

“Historically, Kaposi sarcoma was described in the 1880s by an Austro-Hungarian dermatologist who reported it as a disease that occurs in mostly men of Eastern European and Mediterranean origin. Occasionally, Russians, Jews, Italians, and Spanish people. It was usually on the lower extremities and was a pretty benign disease,” explained Dr. Friedman-Kien. 

“We knew it was a harbinger of something, and it was unlike anything we had seen before.”

June 5, 1981: The AIDS epidemic officially begins as the CDC’s Morbidity and Mortality Weekly Report (MMWR) identifies unusual clusters of Pneumocystis pneumonia (PCP) in men in Los Angeles.

What started as a series of isolated observations in major metropolitan areas at the end of the 1970s had solidified into a new emerging epidemic by 1981.

“Pneumocystis pneumonia, of course. That was the initial CDC report,” said Timothy Berger, MD, professor of dermatology at the University of California, San Francisco School of Medicine. “Pneumocystis pneumonia is only seen in patients who are immunodeficient. That was one red flag. On the dermatology side, we began to see Kaposi sarcoma in young, healthy individuals, and it was very progressive which was atypical. Even in older men, it does not progress rapidly, but in these cases, the KS just took off. Patients were getting visceral KS, pulmonary KS, and then they died. Dermatologists recognized that this was not normal, and that there must be something else going on with the patient that was causing the unusual behavior of the KS.”

July 3, 1981: The CDC reports on unusual clusters of Kaposi sarcoma and PCP in California and New York based on observations from dermatologists.   

By mid, 1981, Dr. Friedman-Kien began reaching out to colleagues to see if they too had noticed any unusual increases in Kaposi sarcoma among their patients.

“I reached out to all of the dermatologists in the New York City area, and amazingly in about three days I had three other cases,” he said. 

After looping in dermatologists at the University of California San Francisco, Dr. Friedman-Kien and others eventually accrued 26 initial cases that would appear in the CDC’s July 1981 MMWR.

“Dermatologists at that time — Marcus Conant and Alvin Friedman-Kien in San Francisco and New York, respectively — were patient advocates for the affected community and leaders in the field,” said Dr. Berger. “There were those of us who were actually seeing HIV patients and trying to do the academic work that was needed. It was a challenging time because there was initially no treatment.” 

“In 1981, we started seeing patients in the hospital with Pneumocystis pneumonia, Kaposi sarcoma, severe molluscum contagiosum, itchy eruptions, bad cases of seborrheic dermatitis, cases of severe psoriasis — just really, really sick patients. We knew it was a harbinger of something, and it was unlike anything we had seen before,” said Dr Rudikoff. “That same summer I went up to Boston; I had a friend who wrote for a local newspaper called The Northshore Sunday, and he asked me about it, because there had been word of this new disease, although there still weren’t a lot of cases. I was quoted saying, ‘I think we may only be seeing the tip of the iceberg,’ and of course, it only went downhill from there.”  

Early on, stigma regarding the mysterious new disease had already begun to build.

“At that time, HIV had not been yet identified. So nobody knew it was the cause. In those days they called it the ‘gay plague,’ although it was also being seen in Haitians and heroin addicts,” said Dr. Rudikoff. “In the early 80s, there was some resistance to serious investigation. I remember a conference at Mt. Sinai on Gay-Related Immune Deficiency (GRID) in late 1981, where a physician affiliated with the hospital made some very moralistic remarks but was eventually replaced.” 

“For two and a half years, the science editor at the New York Times wouldn’t touch it at all. We tried to contact him to tell him about the other cases, but for some reason I guess the editorial board wasn’t interested in writing about a disease that was impacting gay men,” said Dr. Friedman-Kien. “In retrospect, it’s easy to look back and see the failure. When our grant application was rejected, they didn’t think it was scientifically oriented enough. It was very difficult. By the end of 1981, almost every bed in Bellevue Hospital was full of people who were dying, mostly of pneumonia and other opportunistic infections, but many of them also had Kaposi sarcoma.”

1982: The CDC uses the term “AIDS” (Acquired Immune Deficiency Syndrome) for the first time in a new MMWR, replacing “GRID” (Gay-Related Immune Deficiency) which had previously been used to describe the epidemic. Congress holds its first hearing on AIDS. One reporter attends. 

While public interest in HIV remains muted, young physicians begin to take note.

“What really got me into the whole HIV disease area was a public health class for my master’s at UCLA in 1982. There was a researcher from the CDC who came to talk to our class about these new cases of Kaposi sarcoma seen in gay men, and that was the first I had heard about Kaposi sarcoma in this particular group,” recalled Toby Maurer, MD, HIV dermatology expert, and professor of dermatology at Indiana University School of Medicine. “For me, that was very interesting. I had come into public health hoping to do cancer research, and this was cancer, but seemed to be acute. That was sort of the beginning of when KS was recognized as being a presenting sign of HIV. I think it led to a lot of people thinking about what this meant, and it triggered my interest.”

“When I went into practice in the beginning of 1983, I was on the Upper West Side of New York, so I had a number of gay clientele. People would develop Kaposi sarcoma on the face, and it was almost like wearing a scarlet letter.”

1983: In January, “Ward 86,” the world’s first dedicated outpatient AIDS clinic, opens at San Francisco General Hospital. By May, 1,450 cases of AIDS have been reported, and 558 of those individuals have died.

Dr. Rudikoff recalls this period as a time of growing fear and uncertainty.

“When I went into practice in the beginning of 1983, I was on the Upper West Side of New York, so I had a number of gay clientele. People would develop Kaposi sarcoma on the face, and it was almost like wearing a scarlet letter. There was a medical student who committed suicide at Mt. Sinai back around that time. People were really affected and afraid. They didn’t know what was causing it; they didn’t know how it was spread — for example, whether it could be spread through the air. Early on, there was also this fear that you could get it from touching somebody,” he said.

“There were all kinds of speculations. I remember an internist in New York who thought everything was syphilis, and he was giving doxycycline to everybody. There was another physician who thought that it had to do with immune dysregulation and TNF, and he was giving people Antabuse and naltrexone, because they really didn’t have any treatment options. I remember hearing stories that the undertakers didn’t want to bury the bodies. The federal government, Reagan, didn’t really mention HIV at all.”

April 1984: Probable cause of AIDS is discovered — the retrovirus is renamed human immunodeficiency virus (HIV), and the CDC has identified all of its major transmission routes. 

“Back then we used to see pretty severe cases of Kaposi sarcoma. We saw people with giant molluscum, with chronic zoster. I remember one guy who had this enormous ulceration on his forehead and scalp, and it just turned out to be zoster. We also saw really horrible cases of herpes simplex. I would treat people with chemical peels, for just extensive molluscum,” said Dr. Rudikoff.  

“If you talked to patients at that time about what bothered them most about their HIV infection, many of them said it was their skin,” said Dr. Berger. “So even though they had a fatal disease, the thing that day-to-day was bothering them was their skin inflammation, whether that was psoriasis, itchy rashes, or Kaposi sarcoma that was now visible and stigmatizing.”

September 1985: Under mounting pressure, President Ronald Reagan publicly acknowledges AIDS for the first time in office. 

While recognition of AIDS began to make strides on the national stage, bias in medicine continued to persist.

“I remember a resident who didn’t want to do a biopsy on somebody with HIV. Some people just didn’t want to deal with it, but I did know of another dermatologist in New York, who was doing a lot of work with HIV patients at that time, using fillers to treat patients who had these severe depressions on their face that identified them as having AIDS,” said Dr. Rudikoff. 

“For those of us who were in places where HIV was common, it became pretty quickly part of our practice. However, many dermatologists across the country had not had that experience, so this was completely new to them. This was also at a time when the gay community was not nearly as out in many areas. A lot of dermatologists just did not believe that there could be people with HIV infection in their community, the thinking being, ‘Those patients don’t live in my town.’ Of course, we know that’s not true,” said Dr. Berger. “I think the friction was created by this moral dilemma that existed in the country as a whole. You know, to just treat people as people and not label them.” 

Eventually, however, the tone within dermatology began to shift. 

“Once it became more widespread, and the government began to have more positive messaging around HIV disease and sort of eliminated the stigma, it became better. Pretty quickly, the Academy and the specialty organized themselves. We began to have symposia on HIV at the Academy meetings in the summer and at the main annual meeting. Within a few years, dermatologists everywhere were seeing these patients,” said Dr. Berger. “This was a time when dermatologists were faced with patients with fatal disease, something that doesn’t happen very commonly in dermatology. So it was an emotional adjustment for the specialty. I think the Academy was a really beneficial partner in setting the tone, because people did try to complain about the symposia. The Academy stood its ground and supported all of us who were working in this space.”

“The AIDS epidemic was going full speed ahead. We were admitting four or five patients a night on our service who were HIV infected. We had very little medicine and understanding of what to do for these patients. These were young men dying on our wards.”

“We really do stand on the shoulders of those who pushed that envelope, no question,” said Dr. Maurer. “Yes, there was definitely a stigma. I think dermatologists in general are a conservative group, and a somewhat isolated group from other areas of medicine. They don’t always have access to the larger communities. Dermatology is not an area that enjoys equal access to all kinds of folks in all kinds of socioeconomic areas, so they’re less likely to know what’s going on in those areas, and perhaps want to stay out of those areas for all kinds of reasons. However, the older generation of dermatologists working in HIV really understood the need for equal access to health care, equality of health care, and made it possible for those of us in the younger generation to really go forward.”

1986: NIAID Director Anthony Fauci, MD, reports that one million Americans had already been infected with the virus.

Although a family medicine resident in 1986, Dr. Maurer’s interest in dermatology begins to take shape as she observes patients at San Francisco General Hospital. 

“The AIDS epidemic was going full speed ahead. We were admitting four or five patients a night on our service who were HIV-infected. We had very little medicine and understanding of what to do for these patients. These were young men dying on our wards," she recalled.

"We have a famous ward, 5A, at San Francisco General, and we started an outpatient clinic, Ward 86, which became the model for HIV care. It was at that same time that I started to do some dermatology rotations as part of family medicine, and really noticed that there were lots of HIV-infected patients who were coming to the clinics with dermatologic problems that seemed to be associated with HIV. I also realized that very little was being documented from the dermatologic point of view. There was very little epidemiology in dermatology at that time. The associations with HIV were just starting to be made. Doctors who were working in the area were basically taking care of patients, and trying to help them the best they could, but they weren’t really putting together patterns of disease. I felt like there was this huge gap there in dermatology and HIV, and with my background in family medicine taking care of the HIV crowd, I saw this as a large potential area to work in and to investigate.”  

In the pre-antiretroviral era, treatment options were limited, often resulting in profound loss. 

“This was the early time before antiretrovirals, before we did the triple therapy, which came up in 1995. We were really only dealing with one antiretroviral, which was called AZT. We were seeing what we could do to boost the immune system with AZT, and what effect that had on the dermatologic conditions,” said Dr. Maurer. “A lot of us were working on eosinophilic folliculitis, for example, a skin disease that’s very itchy for our patients who were HIV-infected with low CD4 counts. We identified itraconazole as something that would help with that. So we were trying to be innovative and bring in medicines that could help the dermatologic diseases specifically, because at that point we didn’t have HIV medicines that could really work on the immune system.” 

“I had a number of friends who died in the early 1990s. There was a singer named Michael Callen who died around 1993,” said Dr. Rudikoff. “He wrote a song called ‘Love Don’t Need A Reason.’ They say, ‘Love is all we have for now; what we don’t have is time.’ That changed very shortly after with the introduction of protease inhibitors.”

June 1995: The FDA approves the first protease inhibitor. This ushers in a new era of highly active antiretroviral therapy (HAART).

The introduction of antiretroviral therapy was revolutionary in the fight against HIV and AIDS. 

“It was a great time for HIV and derm diseases. By just boosting the immune system, we saw that a lot of derm diseases regressed, and things like molluscum went away almost entirely. So we were very pleased. Kaposi sarcoma also seemed to go away with the introduction of antiretrovirals. This was a great boon, as you can imagine, for our patients, and for dermatology,” said Dr. Maurer. “I remember it was the summer of 1996, when HIV drugs were licensed for youth. By September, we saw that most molluscum disappeared. Molluscum that we had been fighting for years — we would try to eradicate them; they’d come right back in our HIV-infected population. This was the first thing that really went away. We started really documenting things like psoriasis, getting better. However, while certain diseases went away, others showed up as a result of dysregulation of the immune system. This let us understand what happens when you give people these antiretrovirals. The immune system becomes dysregulated for some time, and you get certain dermatologic diseases that come to a head.”

“After the development of HAART, we started seeing lipoatrophy, and we also saw cases of Stevens-Johnson Syndrome. More recently, I mostly see patients with just severe chronic HPV infections, oral lesions, oral condyloma, and perianal condyloma, and general condyloma that are resistant to treatment, even if they’re on HAART,” said Dr. Rudikoff. “You still see Kaposi sarcoma. Where I practice in the Bronx, sometimes we have patients who are not compliant with HIV medications, so we will sometimes see some of the things that we used to see before.”

“It’s time to turn our attention to the global aspect of dermatology and HIV. I think that has certainly been underscored by this COVID crisis we have right now. Recognize that unless we take a public health perspective on the global front, we all will suffer.”

“I would have to say, for me, and for others who were active during that period of time, it was a wonderful collaborative effort. We worked together; we made new discoveries together that really paid off in the field of HIV. Derm had a direct effect on HIV immunology, and HIV immunology had a direct effect on derm,” said Dr. Maurer. 

As treatment options and outcomes improved, so did public attitudes regarding the virus.

“With these antiretrovirals becoming available, I think that people realized what great strides were being made, not only in HIV, but in immunology in general, and how that might impact all areas of medicine,” said Dr. Maurer. “By 1998 or so, HIV was seen as an area where progress was being made. I think people felt optimistic, like we were really conquering something that had previously been an enigma. From 2000 onward, those were just great years for pushing all kinds of science, which has its ramifications right now with mRNA. Being able to work with mRNA, being able to think about vaccines. Without that, we would not have been able to even look at this coronavirus and figure out what to do.”

“There are a few things that happened. One, there were also hemophiliacs and people who had received blood transfusions and contracted HIV disease. That took away this moral stigma that many people had,” said Dr. Berger. “It took a while for people to be able to separate what they perceived as the morality of the situation from the medical side of the situation.” 

2021: The work continues. 

While certain demographics are still disproportionately affected by HIV, the disease has become less of a focus within the U.S. health care system in recent years. Despite the strides that have been made in treatment and prevention, public health officials and physicians should remain vigilant, advises Dr. Maurer.

“From my experience over the last 35 years, whenever we let our guard down and think it’s all over, we get slapped in the face. I’ve seen that over, and over again, with regard to HIV in particular. I would push the current generation of dermatologists. They need to know the history, but also need to be ever vigilant for new things that crop up, and for chronic diseases of the skin that crop up — particularly cancer,” she advised. “It’s also important to consider the global aspect of HIV dermatology. Although there are antiretrovirals all over Africa, KS is not going away. Why is that? What does that mean? It’s time to turn our attention to the global aspect of dermatology and HIV. I think that has certainly been underscored by this COVID crisis we have right now. Recognize that unless we take a public health perspective on the global front, we all will suffer.” 

“HIV led to the enlightenment of dermatology that a patient’s immune system was critical to the way their skin looked and behaved.”

Within dermatology, HIV has fundamentally changed the way the specialty approaches certain diseases. 

“What we recognized was that the patient’s immune system made a big difference in the way their skin behaved. What happened thereafter is we began to use much more potent immunosuppressives, we began to use targeted biologics, we began to do bone marrow transplants. Based on our experience with HIV disease, we were able to then understand the skin diseases of these other now more iatrogenic immunodeficiency states,” said Dr. Berger.

“In the 1980s, dermatologists would never ask someone about their immune status. Once the HIV epidemic happened, people began to ask those questions. Now we’re realizing that in geriatrics, for instance, much of the inflammatory skin disease is driven by immunodeficiency, albeit age-related. The lessons we learned from the HIV epidemic are now helping our geriatric population, our graft-versus-host population, and other immune-deficient patients we see in our practices. HIV led to the enlightenment of dermatology that a patient’s immune system was critical to the way their skin looked and behaved.”

Attitudes too, regarding those who have historically suffered the most from HIV, have progressed over time.

“You know, life in New York has really transformed,” said Dr. Rudikoff. “I actually belonged to something called the Gay Activist Alliance in 1970. I was really paranoid about letting people know. However, things have changed. I’m in the Bronx now, and now you will sometimes see signs on bus stops about gay men’s health. You would never have seen anything like that back then. Over the years, I believe there’s been a change in the way we feel about people who are different from them.”

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