Dr. Donna Sweet and Bruce discuss the history of the HIV epidemic through the lens of Dr. Sweet’s personal experience as a practitioner. They talk about the early experiences of treating and managing HIV and AIDS before tests, empirical treatments, and sufficient knowledge about the virus. They discuss how antiretroviral therapy and new clinical case definitions in the 1990s and 2000s allowed for better treatment and management of HIV. Throughout the conversation, they mention how the stigma surrounding HIV and homosexuality remains prevalent and unnecessary and the danger of continuing misinformation. They conclude with an outlook on the future of HIV medicine, vaccinations and cure.
About Dr. Donna Sweet:
Donna Sweet, MD, AAHIVS, MACP, is a professor of internal medicine at the University of Kansas School of Medicine in Wichita, Kansas, and has been credentialed with the Academy since its inception. She has an HIV program in her clinic with federal Ryan White, Parts B, C, D and F funds, where she cares for approximately 1,400 patients with HIV.
Timeline of the HIV epidemic - https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline
UCSF AIDS History Project Collections - https://www.library.ucsf.edu/archives/aids/collections/
Future directions - https://www.niaid.nih.gov/diseases-conditions/future-hiv-treatment
Questions about this topic? E-mail firstname.lastname@example.org to get connected with Bruce or any of our guests.
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To learn more about the Academy, visit www.aahivm.org
Welcome to the Academy Exchange, HIV Today and tomorrow. In this podcast, we discuss the latest advances in HIV prevention care and treatment, as well as examine the societal and systemic issues facing people with HIV. Thank you for joining us.
Hello and welcome back to our listeners. This is Bruce Packett, Executive Director of the American Academy of HIV Medicine and host of the Academy Exchange podcast series. As the subtitle of our podcast suggests, HIV Today & Tomorrow, in most of our episodes, we've done a lot of looking at emerging issues in HIV and related topics, things like what's coming down the pike with new treatments, new prevention options, a look at research and cures and so on.
This will be a bit of a different conversation because in this one we're looking back to the past, to the early days of the emerging epidemic in the eighties and kind of past to present look at where we've been and really how far we've come in the social, clinical and research aspects of HIV AIDS, which we hope we could use to help chart out a path to the end of the epidemic, as well as look for lessons learned to apply to new and emerging epidemics, COVID being a recent significant example.
But it should be a really fun conversation because we get to chart the scientific and some social progress since those beginning really sort of dark days. So we'll go ahead and call this the legacy episode, I think.
I'm not personally super well equipped to do this historical narrative myself. I was probably only a relatively young child during the beginning days of the epidemic and then later became aware of HIV in the 1990s when the Ryan White story was covered so broadly in the media. But here with me today, I have the exact right person to talk about those early days and to do sort of a survey of our progress with the disease socially and clinically.
And that is Dr. Donna Sweet, MD, AAHIVS, MACP. Dr. Sweet is a professor of internal medicine at the University of Kansas School of Medicine in Wichita and has been certified as an HIV specialist by the American Academy of HIV Medicine since its inception. She has an HIV program in her clinic with federal Ryan White, Parts B, C, D, and F funds, where she cares for approximately 1400 patients with HIV.
Dr. Sweet, thank you so much for joining us today, and I hope it's not too early in the day to try to travel back in time over 40 years, if you can believe it's been that long.
It has been that long. And I'm looking forward to the discussion. It's such an amazing difference from when I started my practice.
Isn't that true? So to rewind and start us off, the first reported cases of AIDS in the U.S. happened in 1981. These cases were first highlighted in a weekly report from the CDC called the Morbidity and Mortality Weekly Report (MMWR), and it described rare lung infections in five young and previously healthy gay men in Los Angeles. Then, a short amount of time later, after several reports about rare opportunistic infections, a 35 year old gay man who had severe immunodeficiency was admitted to the Clinical Center at the National Institutes of Health (NIH) and he died at the center four months later. By the end of 1981, there were 337 reported cases of people with severe immune deficiency and 130 of those people died by the end of the year. On September 24th, 1982, the nomenclature Acquired Immune Deficiency Syndrome, or AIDS, was used for the first time in the CDC, MMWR to describe these cases of severe immunodeficiency.
It was defined as a disease at least moderately predictive of a defect in cell mediated immunity occurring in a person with no known cause for diminished resistance to disease, unquote. So looking back to those early days of the 1980s, let's begin with where you were at the time in your medical career. Can you just kind of set the stage for what you were doing in medicine at that time that gave you those touch points with some of these early cases?
Well, I was just beginning my career. I'm a little bit of a slow starter. I did a masters and worked in some research microbiology for two or three years before I went to medical school. I got into medical school in 1976 and finished in 79 and then did my residency and finished in 82. It was 1983 when I saw my first HIV patient.
And I was fascinated by the science being an immunology and microbiology background person. I was following the fascinating science about RNA viruses. Before we always thought information flowed from DNA only, but then we suddenly had retroviruses that were being described. That was right before the beginning of seeing what we now call AIDS patients. So I was fascinated by the science, and I was following the literature and started doing some speaking about it just in terms of people learning about the science of RNA viruses.
Then when the 1981/82 cases of opportunistic infections started showing up it became even more of a fascinating topic for me. And at that point, in 1981/82, that's what it was, a learning topic. It got to be much more in 1983, when the first patient that I know came back to Kansas. He had Kaposi's sarcoma and he was sort of asking around about who was the HIV doctor. And since I had been giving some talks, the people gave him my name and therein started my 40 year saga. Because I started my practice in 1982 and just celebrated my 40th anniversary with the university doing the same thing.
Congratulations on that milestone. That's really great. Dr. Sweet, I'm really interested in your earliest subjective impressions of HIV. What were some of your general thoughts about this unknown emerging disease, sort of independent from what you know now, 40 years later?
It was lethal. It was, as you pointed out, young people were dying at a rapid rate. Back when I first started picking these cases up, there was no test for HIV. It was a clinical diagnosis. So by the time they showed up in a doctor's office, they were extremely ill with things like Pneumocystis and Cryptococcus and Kaposi's sarcoma.
There was very little we could do. We didn't have a test for what was causing it. We didn't do anything but palliative care, essentially, trying to make people as comfortable as possible. But knowing that these young people were probably going to be dead within six months was a very different look at medicine than we had thought. Before this all started, there were people who thought infectious disease was not going to be a needed specialty because we had controlled infectious disease. This virus proved to us that was definitely inaccurate.
Right. And you even touched on sort of not understanding the cause of HIV, but I'm hoping you can tell us what did you know early on about transmissions or what did you speculate about transmissions? And then it's kind of a separate question. What precautions, as a provider, were you told to take? And I'm just curious about what your feelings were at the time about your own potential exposure based on what we now know is sort of the lesser scientific understanding of HIV at the time?
Well, the more that I dealt with it, the less fearful I became of casual contraction of the infection. It clearly was something that was not spread by the telephones and headsets and things that people were worried about with contact precautions. It was in too specific of a group in terms of who was getting it.
It just didn't make any sense that it was airborne or that the sort of lethal, gonna get you just because you breathe the wrong air disease. So I had maybe it was just being young and foolish, but I had very little fear of contracting the disease. And in fact, people were overdoing protection things. Covering everything in plastic is kind of reminiscent of what we did with COVID early on in the epidemic before I knew very much about it.
But we were doing a lot of things that I don't think were necessary, and it did contribute to the stigmatization of this disease, which started from the very beginning.
Sure. And it seemed that in the early eighties, people were scrambling for treatments for those who had AIDS. You know, there were separate wards set up for patients with AIDS, and clinicians and governmental agencies were sharing unpublished research findings to get info out as quickly as possible. And of course, there was just such a high mortality rate as we talked about. In May 1983, there were 1450 cases of AIDS reported and 558 of those people had died.
I'm hoping you can tell us a little about what treatments were available in the early eighties for those who had AIDS and generally how were clinicians directed to care for patients with AIDS?
Well, the treatment issue is easy because there really wasn't anything. There were things like Peptide T that people were flying all over trying to get, but the science didn't really show that it worked any. We didn't have any antiretrovirals or any antivirals until 1987 was when Zidovudine was first available. So we really had nothing to treat the underlying cause.
We treated what we could of the infections, the opportunistic infections. But back then we didn't have medicines for CMV, the cytomegalovirus, so we didn't do a lot of testing for it because we couldn't treat it even if we found it. So it was a very, very difficult time. One became, in my role, a palliative care specialist. And we used hospice a lot because by the time they got to a clinician, it was easy to certify that they were probably going to die within six months. It was a real shift in what medical science thought we should be able to do with infections in young people.
And then toward the end of 1983, researchers had determined the ways people could acquire AIDS. But there were still so many misconceptions on how it was spread, like by shaking hands some of the things you mentioned earlier telephone booths or even living in the same apartment building as someone with AIDS. So as more research reports were published, information both medical and from the media seemed to really tie the illness to gay men very loudly and broadly.
And unfortunately, people will use unexpected tragedies and disaster to do all kinds of irrational moralizing and dots connecting and finger pointing. So with all that in mind, how do you think the widespread prejudice against homosexuality at that time played into the stigma surrounding an AIDS diagnosis?
It was a huge, impactful thing. The stigma. The stigma was just terrible and has continued to this day because of the stigmatization of the gay lifestyle. So it was bad enough that these young people were dying. But to be dying with people not willing to touch them, not willing to hug them, not willing to take care of them sometimes was a devastating blow to many, many people.
So in spite of how far we've come in LGBT rights and acceptance, do you think this history still informs the perception of HIV today and the ways in which it continues to be stigmatized now?
Absolutely. I would like to believe we've gotten away from stigmatization of the gay lifestyle, but we haven't. And it's something that plays into legislative issues and the medical care issues and everything. I've said many, many times, if this disease had gotten into the U.S. in high school soccer teams or football teams, we would be handling it differently because we wouldn't have the stigmatization of being gay that so overwhelms people.
I think you're not the only one to think that, obviously. I want to talk about the Four H Club. This was kind of a moniker at the time or a sort of mnemonic device people were calling sort of at risk people as members of the Four H Club in reference to those groups of at risk people of contracting AIDS, which so we're talking about homosexuals, hemophiliacs, heroin users and Haitians.
Can you talk a little bit about that Four H Club and why and maybe why Haitians were grouped as sort of high risk?
The Haitians were a group because there were many risk factor groups for HIV infection in Haiti. The most common ones, including lower socioeconomic status, lower educational levels, risky behavior and lower levels of awareness regarding HIV and AIDS transmission. So it was simply the fact that it was it got into a sexually active group of people and was spread quite readily, had nothing to do with being Haitian in terms of genetics.
And I think that was one of the things that distracted people. Haitians were at risk because of all the other reasons that were risky behavior, sexual lifestyle, other STIs, not having education, the kind of help that they needed.
This is more of, I guess, speculative question as opposed to an empirical one. But do you think the clinicians working at the time could have played a different or better role in trying to lessen the stigma around acquiring HIV/AIDS? And how so, if it is the case?
Well, there was misinformation spread back then, just like there's been a lot of misinformation about COVID. And there's great parallels between what I call the first pandemic, which is the HIV disease and the second pandemic, which is COVID 19. Because people didn't understand it. And all kinds of theories then become widely disseminated. And they’re disseminated even faster. Now, because of social media and Facebook time and all of the things that people do to get information, whether it's accurate or not.
So it truly was a difficult time because there were physicians spreading misinformation. People who have you may remember those of us who were old enough, the orthopedist from San Francisco, who built a space suit and would only do surgery on HIV patients in this thing that looked like an astronaut's suit with everything being covered was totally unnecessary. But it was done. And it really did make people feel worse about the disease they were already dying from.
That's right. And let's move forward in time a little bit as things start to maybe improve, we start to know more about HIV. On May 1st, 1986, the International Committee on the Taxonomy of Viruses announced that the virus that causes AIDS will officially be called the Human Immunodeficiency Virus (HIV). And in 1987, the FDA approved the first antiretroviral drug for use in HIV/AIDS.
So then by the early 1990s, there was more of what I'll call trustable information about HIV/AIDS, right? More promotion of safe sex and using condoms and more research on using medication after exposure to HIV. But even in 1991, the CDC had published recommendations to restrict the practice of certain HIV positive health care workers. It seemed like for every little bit of progress, there was some kind of fear based pushback to counteract that progress.
And then you have more famous people who are either announcing being HIV positive or dying from AIDS related complications. Magic Johnson and Freddie Mercury are some of the bigger names that come immediately to mind. Do you think having more well-known people dealing with HIV/AIDS helped to make it more relatable to the general public? Were you able to talk to patients about prevention more easily because of this?
Yes. It was something that you could bring up in polite conversation because these were famous people that most people knew and knew about, and they had questions about. Magic Johnson, especially since he was not in any of what people perceived as the high risk groups. And yet he had it and his wife stood by him and all the things that went into being a celebrity and coming up with something like HIV. As a clinician and an educator, it was a very difficult time for me because I was doing a lot of public discussions and public lectures about what this disease was, trying to get people to understand what it wasn't.
And there were many, many people who continued to put out misinformation that just worsened the stigmatization of the poor people who had the disease.
That's right. And then I'm hoping you can sort of walk us through what your recommendations for prevention for your patients were at that time. So we're going back to the early nineties. Also did you treat patients who were diagnosed with HIV or AIDS before there were therapies available? And then maybe just talk generally about how you how you did manage your patient care then?
Yes, I started seeing patients in 1983 and we didn't have Zidovudine or AZT till ‘87, which was the first specific therapy that was available. We talked about behavioral modification a lot, condom use, choosing sexual partners wisely, not choosing as often, trying to stay away from party sex where there were multiple contacts in a given small amount of time.
That's all we had. We didn't have any pharmaceutical way that we knew of to prevent the disease at that time. So we talked about behavior and unfortunately that's a difficult thing to do, is to change behavior.
That's right. And even in history, as we're learning more about the disease, its spread continued. And in 1982, AIDS became the number one cause of death for us men ages 25 to 44. That just seems unthinkable now. You know, it was only 30 years ago and then in 1994, AIDS became the leading cause of death for all Americans, age 25 to 44, which clearly shows that the illness was not just affecting men at that time.
Did it seem to you that women were as worried about HIV AIDS as men, or were people still thinking of this only as a gay man's disease, quote unquote?
Unfortunately, heterosexual women have always thought it was somebody else's problem and really didn't perceive themselves as a high risk group. Regardless of what behavior they participated in. It is one of the things that continued to have the disease spread within the heterosexual population and into children.
So in the mid-90s you have those first protease inhibitors coming to market and then in 1996, AIDS was no longer the leading cause of death for all Americans. Ages 25 to 44, however, did remain the leading cause of death for African Americans and Black identified Americans. This is the time when people are starting to see the racial and socioeconomic disparity set in, right?
So in 1998, AIDS related mortality for African-Americans is almost ten times that of White Americans. So in the late nineties, what were your feelings about HIV, AIDS and the possibility of stopping the epidemic? There were more therapies and tests available at that time. Were you starting to feel kind of hopeful then?
Certainly it was much, much more of a hopeful feel because we had people near death that when the protease inhibitors came out, especially when you started boosting them with ritonavir and getting the levels up and doing multiple drugs at once as opposed to sequential monotherapy, which just led to a lot of resistance. So scientifically, biologically, clinically, it was becoming a much easier disease to take care of because we had options.
And even if you failed your first regimen, we had other regimens and the pharmaceutical companies continued to develop new classes of drugs and new drugs within those classes to make them more tolerable. So consequently, people could take them more. We didn't know so much about U=U, undetectable is untransmittable, but we did have the hope that we could take an individual and make them better longer as opposed to what we had been doing, which is just helping them die.
Dr. Sweet, did you see problems with the public health response to the epidemic? Were you concerned about the possibility of not reaching everyone who needed to hear about HIV prevention and treatment? And were you also worried about drug resistance as developing?
All of the above, unfortunately, because there were so many people who participated in risky behavior the way I and you would think of it, but they didn't think of it that way. It was not their risk that they were concerned about. So whereas people who didn't have to be concerned about touching people were just getting it from casual contact.
We're worried about that. The people who were putting themselves at risk sometimes didn't hear the message or didn't pay attention to the message about prevention and getting treated right.
We're still taking our train to a ride through the history of the epidemic. And we're moving into HIV in the new millennium. So in 2000, President Clinton announced the Millennium Vaccine Initiative. And now, over 20 years later, I want to ask you, do you think we're getting any closer to a vaccine for HIV? Now, for our listeners who are probably wondering how we could make a vaccine for COVID-19 in a year but haven't made one yet for HIV over 40 years, can you explain a little bit about the difficulties of creating a vaccine for HIV?
Certainly an answer to the first question, are we any closer? We thought we might be. There was a Phase three trial going on, but this year, at the research meeting CROI, the Conference on Retroviruses, where a lot of research came out, that study was stopped because it was not improving overall infection rate. The people who were getting placebo did just as well as those who got the vaccine.
And so the MOSAIC trial was halted and we're back to square one now looking perhaps at broadly neutralizing antibodies as opposed to what we've been trying to do. HIV is a difficult virus because it inserts itself into the genetic material of our host cells, our own lymphocytes. It consequently is within the nucleus and it's in a very protected position.
So you can't use the same kind of techniques that we use for a lot of other viral diseases that we have conquered with vaccines. They're still trying and now they're working on a different approach. But it's still very difficult. COVID-19 was easier, but some of the research that they have been doing at the Institute to develop HIV vaccines, which haven't been successful, went into the background of making the vaccine for COVID. And for that we can be grateful.
Sure. And it's super interesting. And so despite, you know, lots of progress with awareness campaigns publicly especially in the early 2000s, there were still pockets of localized outbreaks. In 2009, DC reported a higher rate of HIV prevalence than West Africa. That same year, the CDC launched a multiyear communications campaign to reduce HIV in the U.S. And then in 2010, finally, pre-exposure prophylaxis or PrEP was on the horizon. It really seemed like a hopeful time.
And then two years later, the FDA approves Truvada for PrEP. So looking over the past ten years, what do you think are some of the biggest gains we've had in HIV, AIDS care, treatment, prevention and research?
Well, let's start with HIV care. One, we have multiple medications, 35 different ones at this time. Some of them have been aged out. We don't use them, but we continue to have new medicines. We have one pill once a day, minimal toxicity. That in and of itself is a huge improvement over what we had in the days of Zidovudine where people were trying to wake themselves up every 4 hours around the clock to take two pills that made them very sick anyway.
So consequently we have much easier therapy. We know about what I just mentioned before, the U=U. undetectable viral load is untransmittable. So if one is on therapy and keeps their virus undetectable, they're really no risk to their sexual partners or to the public. So we can do prevention by treatment. We also now have pre-exposure prophylaxis where we can give medications to the at risk populations so that they have a 98% reduction in new infection.
It works. It's an amazing improvement and it continues to work. But again, we don't have a lot of the people who need to be hearing the message, getting the message or getting on the medication. We still have 30,000 or so new infections every year in this country. That doesn't have to happen. If we could get people treated who know they're infected so they don't spread it and we could get people on PrEP so that if they don't have it, they won't get it from their continued behavior. We would make some even bigger inroads into this disease.
Yeah, I completely agree with that. Dr. Sweet, With your, you know, 2020 hindsight and your personal and professional experience, looking back over the past 40 years of the epidemic, did you think we would have progressed more in the fight against the HIV epidemic now? And what would you have liked to have seen happen? What were some of the things that seem to be persisting and hard to work against? Is it the stigma? The association of HIV with homosexuality, especially with gay men? Or the misunderstanding that HIV is a death sentence, quote unquote?
Certainly all of those things exist, and I think it would be nice if we could get rid of the stigma. It's unnecessary. This is not a disease is spread by casual contact, and it is a disease that you can avoid getting by personal behavior change. So the association of HIV with homosexuality, especially in gay men, continues to plague us because there are some people who just can't get past that and don't realize that if they're doing the behavior that spreads it, it doesn't matter what you call the risk being gay or whatever.
And then there are still some people who say, well, I don't want to know that I have something that's going to kill me. Well, we all have something that eventually is going to kill us. Then HIV is not a death sentence. We're our patients now. If they get into care early and keep their CD4 count up, keep their viral load down, have every possibility of living to be 82 to 88, which is a normal lifespan for men in the U.S. That's the message we need to get out so that people know their status and take care to protect themselves and to protect others.
Absolutely. That is 100% the golden message. And then finally, looking ahead, where would you like us to be 40 years from now? Obviously, we know that the federal government has a cross-departmental End the Epidemic initiative with some resources behind it, and they're aiming to functionally end new transmissions by the end of the decade, which of course is an optimistic goal.
What do you think about this as a plan? Do you think that there will ever be a vaccine or cure? I mean, I know we talked about that to some extent, but the hope is that maybe HIV could be like polio someday, just a terrible part of our history, but essentially eradicated because of medical advances and a coordinated public health response.
Well, that's what I hope for. I hope it doesn't take 40 years. I do think we're closer than that to a vaccine. There's some optimism about, as I said, development of broadly neutralizing antibodies. That is a different approach to vaccines from what we've been doing. So within 5 to 10 years, we may have a vaccine. Even if it's not totally protective, one, if it if it changes the face of the disease, that would be helpful.
Cure, may be less likely. As I said, this virus gets into the genetic material of the host cells and it's protected there. So there's a lot of cure research going on. There's four people in the world who have been labeled as cured, and those were stem cell transplants, bone marrow transplants, which we certainly can't do for the millions of people who are infected.
But it does give us proof of concept so that people can continue to work on genetic approaches to curing, etc.. So a cure, maybe. I think a vaccine much more likely either way.
Certainly a very optimistic look at the future for the HIV epidemic. Dr. Sweet It has been a real treat to talk to you today and to hear your really unique perspective on HIV health care past the present. Thanks again.
Well, thank you. It's been fun reliving history, even though it was a very difficult time.