Anthony Fauci: Confronting the HIV pandemic

Anthony Fauci tells Chris Smith about his handling of the HIV crisis...

Chris - Of course, when we think about pandemics and we think about Covid, there's possibly a 20 million death toll, that nevertheless is dwarfed by that other pandemic you mentioned. The one that took us a while to realise was happening, and that was HIV which, conservatively, people say there was maybe a hundred million death toll from that. We know that right now there are north of 30 million people living with this infection, which until bright people came up with drugs to control it, was guaranteed to kill you. You were running a major division at that point. When HIV began to appear on the radar, that must have been a very interesting time to be working. Presumably, it was quite frightening because we didn't know what this was?

Anthony - Yes, it was challenging in many respects, exciting, but also it was daunting because of my dual identity as a physician who was actually taking hands on care of patients at the same time as a scientist who was trying to find answers to a problem of a mysterious disease. When I first started seeing patients and caring for them, AIDS didn't even have a name. We were calling it gay related immunodeficiency or the gay cancer because of Kaposi sarcoma, and it certainly didn't have an aetiology until 1983, 1984. So those early years, until we began to develop the therapies that have completely transformed, in a very positive way, the lives of persons with HIV, those were the very dark years of my professional career because, as hard as we tried, all of our patients up to a point, overwhelmingly, the vast majority of them, with very few exceptions, ultimately died.

Anthony - And it was a great challenge. And one of the things that my colleagues and I feel very good about is that I established a specific program in the institute that I directed, the National Institute of Allergy and Infectious Diseases, directed solely at HIV AIDS because of the compelling need to develop interventions and to bring the best and the brightest of the scientists, hopefully young scientists, into the field. And, over a period of time, that proved to be highly successful because we went from a disease with an almost uniform fatality to a disease now where you can give a combination of drugs, sometimes in a single pill once a day, that can bring the level of virus to below a detectable level and keep it there and allow persons with HIV, with few exceptions now, to lead almost the normal lifespan - maybe a year or two less than what would would be considered the normal life expectancy. That is a major, major accomplishment, which over a period of decades went from despair about no interventions that were of use to a couple of decades later being able to have transformed the lives of persons with HIV. That was a very historic accomplishment.

Chris - Well, you do say that you feel that your identity has been defined by HIV and from what you were just saying there, when I first went to medical school, I remember a patient walking in front of a packed lecture theatre of students - this is in the early nineties - and this person sat there and told us about their story and was in the terminal stages of AIDS and almost certainly would've been dead before I finished that year of medical school. And within 10 years of that experience as a virologist, as I am now, we were routinely treating people in the way you say, and that person would be alive today if they had been infected 10 years later. And then I think around the same sort of time when we see Freddie Mercury dying of HIV and you think, if time had shifted 10 years, we'd still have these people. And that I think is an amazing testimony to how medicine has delivered in this instance, isn't it?

Anthony - Well, absolutely, and I have colleagues and friends who fall into the same category that you mentioned that Freddie Mercury was in, that if you were able to hold on until 1996 when we got the combination, the triple combinations driven by the protease inhibitors, that period was completely transforming. People refer to it as the Lazarus effect. People who otherwise would've been in hospice care were turning around and essentially getting up and figuring out what they're going to do with the rest of their lives. If you were treated before you became an advanced illness, then you could actually look and feel like you've never been infected at all. The drugs were so effective.

Chris - A number of books which cover and chart the emergence of HIV in America and other western countries mention you. And you weren't always flavour of the month with a lot of these people in the early days. They were quite adversarial towards you despite the positive things you've just been saying.

Anthony - Yes, that is correct. And again, that ultimately turned out to be a very good news story. And what it was is that, despite the availability of drugs, and even before the really truly effective drugs became available, the community, the advocacy groups, those living with HIV and at risk for HIV, rightfully felt that since we did not yet have good treatments for HIV, rigid entry and exclusion criteria on clinical trials on the part of the scientific community, and the very rigid regulations of the regulatory bodies like the US FDA, were really ill suited for the very unique nature of a disease that was almost uniformly killing people - mostly young gay men at the time in the United States. And there were no really good interventions that were available. And the only ones that were available were those of an experimental nature.

Anthony - And what the community felt is that they wanted a seat at the table with the scientists and with the regulatory community to be able to have their input. But at the time, the scientific community was not really amenable to listening to the advocacy groups because they felt inappropriately that they knew best. So the community decided they needed to get the attention of a scientific community and a regulatory community that was not listening to them. Since I was such a visible person in the field, because I was leading the leading scientific institute, and, interestingly, I was always advocating for more resources, but doing more for HIV AIDS, I became a well-known public figure, the so-called symbolic face of the federal government. They would attack me and they did. They were very iconoclastic, confrontational, theatrical in saying somewhat outlandish things that caught our attention. Like, "Fauci, you're a murderer, you're killing us. You're an incompetent idiot." Things like that. Well, they certainly caught my attention and one of the best things I did was put aside the theatrics and the iconoclastic and disruptive behaviour and listen to what they had to say. And when I did that, it became very clear that what they were saying was making perfect sense, and that if I were in their shoes, I would've been as disruptive as they were. And, over a period of time, pretty quickly in the late 1980s, I became an AIDS activist and I began pushing and effectively getting the advocacy community a seat at the table in part of our advisory committees and part of our clinical trial community programmes. And I succeeded in getting the FDA to be much more flexible in making available on a compassionate basis interventions that were only available on a very restrictive clinical trial. We call that the parallel track approach, where you can do a clinical trial with all of its restrictions at the same time as you make the medication in a parallel track available to people who might need it. And an informed consent would realise that there's no guarantee that it would work. That I consider one of the most important things that I've done, and once that happened, the activists who were my adversaries wound up becoming not only my colleagues and my collaborators, but to this day, decades later, some of my closest friends.

Chris - One of them even hailed you a hero having spent considerable time, effort and energy disparaging you. So there really was a turnaround.