Our first episode jumps back to 1981.
Dr Anthony Fauci talks to our host, Femi Oke, about how the emergence of this mysterious disease, later known as AIDS, changed the course of his career. He shares why an HIV vaccine, promised by 1986, is the “big and last Holy Grail that we have to achieve”.
We are also joined by:
- Physician Dr Michael Gottlieb, the first to report AIDS as a new disease in June 1981
- HIV activist and epidemiologist Dr Gregg Gonsalves on his role in galvanizing community activism
- Advocates Vincent Basajja (Uganda), Udom Likhitwonnawut (Thailand) and Maureen Luba (Malawi) dispelling myths about vaccines and vaccine research
Anthony Fauci, National Institute of Allergy and Infectious Diseases, USA
Anthony Fauci is Director of the National Institute of Allergy and Infectious Diseases (NIAID) at the U.S. National Institutes of Health, where he oversees an extensive research portfolio devoted to preventing, diagnosing and treating infectious and immune-mediated diseases. Dr Fauci has been a key advisor to six U.S. Presidents and their administrations on global AIDS issues and initiatives to bolster medical and public health preparedness against emerging infectious disease threats, such as pandemic influenza. As an HIV/AIDS researcher, he has been involved in the scientific effort since AIDS was recognized in 1981, conducting pivotal studies that underpin the current understanding of the disease and efforts to develop therapies and tools of prevention. Dr Fauci was a principal architect of the President’s Emergency Plan for AIDS Relief (PEPFAR), which has helped save millions of lives throughout the developing world.
Michael Gottlieb, AIDS Project Los Angeles, USA
Michael Gottlieb is a physician and immunologist known for his 1981 identification of AIDS as a new disease and for his HIV research, activism and philanthropic efforts associated with HIV treatment. He is a Clinical Associate Professor of Medicine at the David Geffen School of Medicine at the University of California, Los Angeles, and medical advisor to the Elizabeth Taylor AIDS Foundation and the Global AIDS Interfaith Alliance (GAIA). He is currently in medical practice at AIDS Project Los Angeles.
Gregg Gonsalves, Yale School of Public Health and Yale Law School, USA
Gregg Gonsalves is an Assistant Professor in the Department of the Epidemiology of Microbial Diseases at Yale School of Public Health (YSPH) and an Associate Professor (Adjunct) at Yale Law School (YLS). He also co-directs the Global Health Justice Partnership, an initiative of YSPH and YLS, working at the intersections of health and human rights and social justice. He is a 2018 MacArthur Fellow.
Vincent Basajja, Medical Research Council, Uganda
Vincent Basajja is Lead Community Liaisons Officer for the Medical Research Council of Uganda. He also works for the Uganda Virus Research Institute and London School of Hygiene & Tropical Medicine Uganda Research Unit (MUL). He has a keen interest in community advocacy for ethical HIV prevention research. He has been involved in community engagement for over 18 years, supporting the MUL Masaka research site to conduct a wide range of community-based bio-medical research, including HIV vaccine clinical trials.
Maureen Luba, Global Advocacy for HIV Prevention, Malawi
Maureen Luba is the Africa Region Advocacy Advisor at Global Advocacy for HIV Prevention (AVAC), where she helps lead capacity-building efforts around strategy development, data analytics and advocacy for civil society organizations in Zimbabwe, Tanzania and Malawi to effectively engage in Global Fund, PEPFAR and national policy decision-making processes. She has a Bachelor’s in Public Administration from the University of Malawi and more than 10 years of experience working on HIV treatment and prevention and sexual and reproductive health and rights (SRHR) programmes. She is a Women in Global Health LEAD Fellow and a visiting scientist for the Department of Global Health & Population at Harvard University. She serves on the Board of the International Partnership for Microbicides, where she advocates for increased HIV prevention and SRHR options for young African women. She is a member of the Advisory Group of the IAS Global HIV Vaccine Enterprise.
Udom Likhitwonnawut, Vaccine Advocacy Resource Group, Thailand
Udom Likhitwonnawut is a member of the Vaccine Advocacy Resource Group (VARG) and has been a consultant for AIDS Vaccine Advocacy Coalition (AVAC) in Thailand on community engagement on HIV research for the past seven years. He consulted on community advisory board (CAB) constitution for the Community Engagement team of the Retrovirology Department of Armed Forces Research Institute of Medical Sciences from 2010 to 2018. His work for AVAC promotes community participation in HIV research and advocacy for good participatory practice implementation. He is a member of the National Subcommittee on HIV Vaccine Development and National Subcommittee on Biomedical HIV Prevention representing the Thai NGO Coalition on AIDS, the national umbrella organization for HIV/AIDS-related organizations. He is a founder of Thailand’s national CAB on HIV research, which members of five institutional CABs formed in 2013.
Read the transcript
HIV unmuted: Episode 1 transcript
Femi Oke: Welcome to the first episode of HIV unmuted, IAS – the International AIDS Society’s podcast. I’m your host, Femi Oke.
It has been 40 years since AIDS was first reported. Come with us through these last four decades, as HIV unmuted brings together the global HIV change-makers from community, policy and science. You’ll learn about the seminal moments and the scientific advances, as well as the human endeavour central to the response.
In 1981, cases of a rare pneumonia were found in five healthy gay men in Los Angeles, and these were later identified as AIDS. Within two years, the virus that causes AIDS was discovered, spurring hopes for a vaccine. But a vaccine has proven to be elusive. It’s been four decades of pain, loss, hope and breakthroughs. Today, we’ll speak with the people who were there at the very start, including someone who has been at the forefront of the AIDS response, serving under seven U.S. presidents. That man, of course, is Dr Anthony Fauci. And we’ll meet community advocates from Asia and Africa to myth bust common misconceptions about HIV vaccines. But before we do that, let’s head back to 1981.
The Cold War is in full effect. Ronald Reagan is the new American president. Lady Diana and Prince Charles are married. Nelson Mandela, at this point, has been imprisoned for 17 years. IBM introduces its first personal computer. And medicine is entering a new era thanks to discoveries like the MRI.
In January of 1981, Dr Michael Gottlieb, a physician and assistant professor at the University of California, Los Angeles, was part of a startling discovery.
Michael Gottlieb: Well, that particular day in January 1981 was an ordinary day. My routine was the same and on rounds in the afternoon, one of the postdoctoral fellows told me about a patient he had seen on the wards. We were amazed that he had come in with this opportunistic infection, pneumocystis pneumonia, which we just didn’t see in folks coming in off the street.
Femi Oke: Now, this type of pneumonia is rare in otherwise healthy people, which these young men appeared to be. How rare?
Michael Gottlieb: I had never seen a case of pneumocystis pneumonia. And we looked at his immune system because we were immunologists by training and found that his CD4 cells had basically gone missing; this is a particular type of T cell that is important in fighting a whole host of infections.
Femi Oke: Doctors had never seen anything like this before – healthy young men whose immune systems have been ravaged.
Michael Gottlieb: At that point, we’re thinking that something’s up, and we had no idea how big it was about to be. And then we began hearing from our gay physician colleagues that they had many more young men who also had swollen lymph glands and low-grade fevers and didn’t feel well. We began to think that, at least in that population here in Los Angeles, there was something going on beyond the peak of the iceberg, which was these patients with opportunistic infections, that there must be a base of the iceberg, and that whatever we were seeing was going to turn out to be much more common.
Femi Oke: On June the fifth, 1981, Michael and his colleagues published an article in the U.S. Centers for Disease Control Weekly Morbidity and Mortality Report. It was used by health professionals to track emerging threats and trends. The article wasn’t even the top news.
Michael Gottlieb: Our article is the second article, entitled “Pneumocystis Pneumonia, Los Angeles”. The first article was on “Dinghy Fever on U.S. Travelers to the Caribbean”. So it was not the lead story. I have talked to many people since and they tell me that they remember where they were when they read that report, that it made such an impact on them, as the day that Kennedy was shot. It was one of those days that’s indelible in your memory.
Femi Oke: Calls began to pour in from around the country as doctors recognized the same baffling symptoms in their patients.
Michael Gottlieb: It didn’t have any name. For a while, it was called GRID, Gay Related Immune Deficiency, which was, of course, inappropriate, but it wasn’t called AIDS. We had no inkling that it was about to become what it became.
Femi Oke: Because AIDS seem to affect only gay men and people who inject drugs, both marginalized groups, research suffered from a lack of proper funding. This is a cause Michael has dedicated his life to. So, too, would Gregg Gonsalves, but in 1981, he was just graduating high school.
Gregg Gonsalves: I guess I’m maybe the first of the AIDS generation in terms of becoming a gay man right at the time that the virus hit New York City and the rest of the country.
Femi Oke: It’s the early 1980s and though AIDS is becoming known in scientific circles, many young gay men hadn’t even heard about it.
Gregg Gonsalves: I think, actually, in the first few years for the youngest generation of young men coming of age at that point, the AIDS epidemic was not on their radar, so there’s no information. It’s not like it’s being covered by the mainstream media. There’s a little bit of information in the gay press, but the gay press in Boston, Massachusetts, were two small papers. If you wanted to figure out what was happening to you and to your friends, you had to go find information.
Femi Oke: Gregg’s search for information began with a personal revelation.
Gregg Gonsalves: I met somebody and fell in love, and then a month or so later, he came over, saying that he had to break up because … and he wouldn’t tell me and he was crying and it was a pretty dramatic scene. He finally came out to me and said, “I was HIV positive.” I’d never conceptualized it before, but I said, “Look, we’ll get through it. We’ll figure it out together.”
Femi Oke: But nothing was happening: no funding, no awareness, nothing.
Gregg Gonsalves: We really weren’t on the radar of anybody. Reagan never said the word “AIDS” until years into his presidency and they laughed about it in the Oval Office. We didn’t matter. Gay men were basically disposable people.
Femi Oke: The gay community fought back by organizing. Gregg joined Act Up, well known for huge public displays meant to shake the establishment into action. He later co-founded the Treatment Action Group and, after years as an activist, Gregg realized that his love of science, stoked years earlier in college, still burned brightly. He earned his PhD at Yale School of Public Health where he’s an assistant professor. Dr Michael Gottlieb has also dedicated his life to HIV as a doctor and activist. Today, he works at AIDS Project, Los Angeles.
Forty years. That’s a long time. There has been some spectacular progress in terms of treatment, but scientists have repeatedly run into obstacles when it comes to the vaccine. The rapid development of several effective COVID-19 vaccines in less than a year has many today questioning why an effective HIV vaccine has proven so difficult to find.
Enter Dr Anthony Fauci, the world-renowned scientist, director of the United States National Institute of Allergy and Infectious Diseases, who has been at the helm of the HIV response since day one.
Anthony Fauci: I’m probably one of the few people still around who actually was involved in those very first weeks in the summer of 1981, when the first cases were reported in the United States, even though that’s not the only place that it was going on. But at that time, in June and July of 1981, we became aware that we were dealing with a brand-new syndrome. And I made a decision at that point in the summer and fall of 1981 that I was going to turn around the direction of my research and focus completely on this unusual disease that didn’t have a name yet, that certainly didn’t have an ideologic agent, but that mysteriously was infecting what was felt to be, incorrectly, only young gay men. What we didn’t realize at the time was that globally, it was very much, much more diffuse than just in the gay population, but that was my first introduction to that in the very, very first weeks of the recognition of the outbreak.
Femi Oke: What is it like, Dr Fauci, as a scientist, somebody who researches infectious diseases, to come across something that nobody has seen before? How does that change your work? What is that like?
Anthony Fauci: Well, it’s very unique and in my own experience, unprecedented, and that’s the reason why it was so stunning. I remember very, very clearly exactly where I was when I got that second MMWR (Weekly Morbidity and Mortality Report) on July 5, 1981. I was sitting in my office right near my lab, right near a ward where we see patients, and I read this and it was the second one. The first report, which was only five young gay men who had this unusual syndrome, I thought was a flu, and I just put it aside. But one month later, another report, curiously and strikingly, was about young gay men, who not only had pneumocystis, but also underlying opportunistic infections, as well as Kaposi’s Sarcoma. Then I just felt shocked because I knew deep down, that this was something new that had never been seen before, and I had been a physician now for some time.
I had already been at the NIH for nine years in infectious diseases and immunology, and I knew something new when I saw it, and this was it. It was exciting and frightening at the same time, and that was the thing that actually made me absolutely certain that that’s what I wanted to pursue. This was a mysterious new disease in my field, which was infectious disease. I assumed correctly, as did most everybody else, that this was an infectious disease. It had to be based on epidemiology. It had to be an infectious disease, and that’s where it started. Interestingly, 40 years later, I’m still pursuing various aspects of this disease.
Femi Oke: At what point did politics start to impact research?
Anthony Fauci: I think almost from the very beginning, because in the United States, as elsewhere in the world, it was predominantly a disease among young gay men. Then we found out it was among injection drug users and then commercial sex workers, all of whom were disenfranchised populations of people. Particularly at that time, in the early 1980s, our government, our executive branch, was very much leaning towards being a conservative government. I wouldn’t say politics entered into it. I think we would rather call it neglect of appreciation and focusing on what can be done about it. It’s well known that in the very early years, Ronald Reagan, who had so many good aspects to him, did not use the bully pulpit of the presidency to call attention to this emerging outbreak in which we were seeing only the tip of the iceberg. So, I wouldn’t necessarily call that politics in the classic sense, but it was not utilizing the machinery of politics to get ahead of this and, unfortunately, it was neglected for a bit.
Femi Oke: Out of all of the seven presidents that you have seen and you’ve worked with in some capacity, which of the presidents would you say – I know you’re very diplomatic, so I’m interested to see what you’re going to say here – had the best attitude towards HIV/AIDS?
Anthony Fauci: Well, I believe that George HW Bush really made a major transition from almost neglecting the problem to beginning to address it. Clinton carried that forward, but of all the presidents, no doubt it was George W Bush who had the major impact on it. And I felt extremely privileged when he asked me to go back to Africa and to try and put together a programme that would be transforming and accountable, that could turn around the situation in the developing world, particularly southern Africa. As a very moral individual, a very ethical person, he felt that as a rich country, we have a moral obligation to make sure that people don’t suffer and die from a disease merely because of where they happen to live.
And that’s why he told me to go to Africa and put together a programme, which turned out to be what we ultimately called the President’s Emergency Plan for AIDS Relief, or PEPFAR. Of the presidents, with varying degrees of impact, Obama was very, very good, no doubt about that. But the president who had the major impact on global AIDS, unquestionably, is George W Bush, and I will be forever indebted to him for giving me the opportunity to work with him, to develop the PEPFAR programme.
Femi Oke: Let’s talk about the activists who were really keen to push for treatment and also a vaccine and cure for HIV.
Anthony Fauci: Well, the overall impact was extraordinarily positive. Early on, they had to be very provocative, iconoclastic and disruptive in order to gain the attention of the scientific community and the regulatory community when it came to the approval of drugs and the design of clinical trials. Again, I’ve done a few things that I feel good about and some things that I feel less good about. One of the things I feel really quite good about is the fact that I extended myself to a group of individuals who most of the scientific community shied away from because they were so provocative and so disruptive. But I made a decision early, early on that rather than be put aback by them, why not just put aside the theatrics and listen carefully to what they were saying? And if one listened carefully to what they were saying, they made perfect sense.
Femi Oke: It’s hard to think back four decades and say, but do you remember a time HIV really had an impact on you?
Anthony Fauci: There were many things, but one that really stood out was the issue of parallel track. You wanted to do a clinical trial with all the pristine conditions to make sure you got it right and you knew what the toxicities of a particular drug were. But the restrictions of a clinical trial excluded so many people who had no other option and no other intervention, no other drug, be it a drug for HIV or for an opportunistic infection.
It was unheard of among the scientific community to do that. The regulatory community was dead set against it because they felt that would be disruptive of the information – the pristine information – that you would get from the clinical trial. They convinced me that that was the way to go and I became a very strong advocate for the parallel track approach, which by the way, is the forerunner of the compassionate use type of an approach that now is very, very common in the regulatory agencies. That was born with the activists and their concept of parallel track.
Femi Oke: What do you hope will come out of HIV science in the next five years, Dr Fauci? What is possible?
Anthony Fauci: Well, the big and last Holy Grail that we have to achieve is to develop a safe and effective vaccine. We have done spectacularly well over the years with antiretroviral drugs that we all know now have been transforming in their ability to suppress virus to below detectable level. This not only saves the life of persons with HIV and allows them to live, essentially, for the most part a normal life and approach a normal lifespan. It also keeps the level of virus below detectable; it essentially makes transmissibility impossible for a person with an undetectable viral load. And then we have pre-exposure prophylaxis: that’s just very, very important. We now have long-acting antivirals that make it easier to do a therapeutic regimen for someone. But the one last thing that we absolutely need to have that would be the nail in the coffin of this pandemic is a safe and effective vaccine. A lot of effort is being put into that and, as difficult as it is, I believe it’s achievable.
Femi Oke: Last thought here for you, Dr Fauci … looking back over 40 years, how would you sum up the first four decades of the world living with HIV?
Anthony Fauci: Well, I think it’s been a situation of tragedy in many respects, of suffering and pain, but also of extraordinary advances that have been made that have really been transforming. It’s been decades of courage on the part of persons living with HIV. All of that has been extraordinary.
Femi Oke: An effective HIV vaccine. That’s what Dr Fauci believes we need.
Ever since the early days, there have been many myths surrounding HIV, and to this day, myths continue, particularly around vaccines, as we’ve seen with COVID-19. We ask Maureen about the belief by some that an HIV vaccine can give you HIV.
Maureen Luba: My name is Maureen Luba. That’s the common fear that I’ve heard, but it’s simply because people, most communities, still don’t fully understand how the HIV vaccine is developed. So, they fear … because of how other vaccines have been developed, they think that with an HIV vaccine, they’re actually going to take an HIV virus and inject it into your body.
Femi Oke: We reached out to a community liaison officer in Uganda to weigh in.
Vincent Basajja: I am Vincent Basajja. Vaccine-promoting information is given to target audiences in a way that they can understand. We must simplify science. So that sense makes sense to the ordinary person.
Femi Oke: Udom tells us how we can combat misinformation.
Udom Likhitwonnawut: Hello, my name is Udom. I think the way to change people’s attitude is that we have to explain to them how there’s a safety measure built in to every step of the way. How the HIV vaccine study being done from phase one to look at the safety, phase two, phase three, and at each step, they have a safety mechanism built in.
Femi Oke: And a final, popular myth is that there is no hope for an HIV vaccine.
Maureen Luba: I’m 100% positive that by 2030, we should be able to find an effective vaccine – I think especially if we can borrow some of the lessons from the COVID vaccine development. I think my plea for the researchers out there is: don’t give up. Let’s keep on fighting.
Femi Oke: Thank you to all of the guests.
As we observe HIV Vaccine Awareness Day, I want to leave you with a final thought. While it’s frustrating that 40 years after the emergence of AIDS in 1981, there is still no vaccine, but there has been progress. The COVID-19 response has sparked new possibilities for HIV vaccine research and development, and the rapid COVID-19 response would not have been possible without these past 40 years of work on HIV. But there are still many lessons to learn, according to Gregg Gonsalves.
Gregg Gonsalves: Back then it was, who had AIDS drugs? And now, who has a COVID vaccine is the new apartheid in the medical sphere raging across the world, and it’s exactly what happened years ago. There’s a certain set of people who put corporate interests and political interests ahead of the rights and the well-being of the people around the world, and AIDS activists, anybody who cares about justice, should not stand for it.
Femi Oke: Share your story and join the conversation online with the #HIVunmuted for a chance to win an IAS membership. In our next episode, we’ll talk with Professor Françoise Barré-Sinoussi, who discovered the virus that causes AIDS, and speak about the importance of following the science.
This is HIV unmuted and, like our title says, you can’t keep us quiet. Subscribe to the IAS podcast, HIV unmuted, wherever you get your podcasts.
Find out more about the IAS Global Vaccine Enterprise
Established in 2003, the IAS Global HIV Vaccine Enterprise (the Enterprise) became a programme of IAS – the International AIDS Society – in 2018. The Enterprise unites stakeholders to share knowledge, foster collaboration, enable solutions and expand support critical to the development of – and future access to – an HIV vaccine.
Find out more at vaccineenterprise.org