'You have to listen to people': Dr. Anthony Fauci's lessons from a life in public health

Dr. Anthony Fauci was the government’s top infectious disease official during the COVID-19 pandemic.

What has his career in public service taught him?

Today, On Point: Dr. Anthony Fauci's lessons from a life in public health.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases from 1984 to 2022. Member of the White House Coronavirus Task Force under President Trump. Chief Medical Advisor to the President under President Biden. Author of “On Call: A Doctor’s Journey in Public Service."

Part I

MEGHNA CHAKRABARTI: Dr. Anthony Fauci served as the head of the National Institute for Allergies and Infectious Diseases from 1984 to 2022. He was an advisor to every U.S. president since Ronald Reagan. And that put him at the center of efforts to combat diseases that transform the public health and politics of this country, from the HIV/AIDS epidemic in the 1980s to the COVID pandemic beginning in 2020, where he served as one of the lead members of the White House COVID Task Force under then President Donald Trump.

Dr. Fauci writes about those experiences in his new memoir, On Call: A Doctor's Journey in Public Service. Dr. Fauci, welcome back to On Point.

ANTHONY FAUCI: Thank you. It's good to be with you. I have to say I face a little challenge here, Dr. Fauci, because it will be impossible to satisfactorily summarize a 40 plus year career, but we're going to do our best.

Okay.  I wanna start off with obviously the period that you have frequently said really defines your medical career, and that's the work that you did on HIV/AIDS in the '80s and '90s. Could you start with a story of one particular person that you treated, his name in the book is Ron Rinaldi. He obviously had AIDS. He was being treated in in the hospital by you. He suffered from, he also had something called the cytomegalovirus. And you tell the story about one day what changed in Ron between morning rounds and evening rounds when you saw him again. Can you tell us that?

FAUCI: Yeah, that was a very dramatic and moving part of my journey in HIV, which was a 40 plus year journey. And Ron, which is not his real name, because I wanted to maintain the confidentiality of the patient, Ron was a patient who had full blown AIDS, very advanced disease, a wonderful young man who we got to know, my staff and I, who had a complication, an opportunistic infection, as you mentioned, called cytomegalovirus, which can affect multiple organ systems, but particularly is damaging, because it infects the retina of the eye and can progressively eat away at the retina and cause blindness.

So we had Ron in the hospital for a while and he was gradually losing his vision. And I relate in the memoir, that on rounds, my colleague and I, Cliff Lane, would make rounds with him, and he would look up at us in the morning. And you generally make rounds in the morning and in the evening, although if the patients need you, you come into the room anytime on an ad hoc basis.

But in our morning rounds, we'd go in and say, how are you? He'd say, fine. Nice to see you, come back in the evening. Same thing. Fine. Nice to see you. But in one particular day, as his vision was becoming worse and worse, we came in the morning and he looked up and said, hi, Dr. Fauci. Hi, Dr. Lane. Nice to see you guys.

How you doing? Have a good day. We'll see you later in the day. And then that evening, when we came into rounds, I walked in, walked into the room in the bed and looked straight at him. And he looked at me and said, who's there? And that was like getting a crunch to my stomach, because it was clear that in the time between morning rounds and evening rounds, his cytomegalovirus had knocked out the last remaining sight component of his retina, and he was completely blind. ... Tragically, unfortunately he died within a few months thereafter.

CHAKRABARTI: That section of the book really stopped me in my tracks because, you were already, at that point, seeing so much death because the fatality rate from AIDS was so high at the time.

But there was something about that moment where Ron lost his sight, in the book you write you had to work really hard to constrain your emotions, and then after you left the room you burst into tears. What was particularly painful about that?

FAUCI: What was particularly painful was not only feeling a great deal of empathy for Ron, who we got to know well. Because he was a patient of ours for several weeks, almost up to a month at that point.

But it just impressed upon me the frustration and at the time, hopelessness, which fortunately over the next few years turned into a great victory for biomedical research in the development of the drugs. But during that period, it just emphasized for me, as I walked out of the room, went down the hall and turned the corner, and went into my office, which was literally a hundred feet from the clinical wards. I just felt a profound feeling of despair and pain, that no matter what we did to try and help Ron, the disease was relentless. And because we didn't have any therapy at the time, there was really not much we could do but metaphorically put a Band Aids on hemorrhages, which was not working.

CHAKRABARTI: It's interesting how you write in the book about the reason why you got deeply interested, and then deeply committed to doing research on HIV/AIDS. It started with a couple of articles in the CDC's MMRW, I believe, if I remember that correctly. But it was an interesting leap that you took into a field for a disease that at that time, was in, as far as we knew, was infecting a small number of gay men in America, and could have been easily ignored.

And it was by most in the medical profession. So why did you want to end up dedicating a huge chunk of your career to it?

FAUCI: It was a combination of events. As I described in the memoir, I had just come back in 1972 from the final year of my clinical training in New York City at New York Hospital as a chief medical resident in internal medicine.

And from 1972 to '81, I had a rather successful trajectory of my career. I was fortunate enough with a combination of, a really good, generous mentor and an opportunity to treat formerly fatal diseases. I developed some therapies that induced remission in about 93% of people with this auto inflammatory disease called vasculitis, which was an inflammation of the blood vessels in the body that led to multiple organ system failure.

So I was doing very well. But then when I saw the first cases of what turned out to be AIDS, we didn't know it was HIV yet, because it was only 1981 in the summer. I read this MMWR that had five cases of, very curiously, all gay men who had previously been well, who had died from a very strange pneumonia called pneumocystis, which really attacks only people with very compromised immune systems.

I thought it was a fluke, to be honest with you, or truth be told. And I just put it aside. And then a month later in July of 1981, another MMWR, which is a report from the CDC, which talks about the surveillance of new diseases, now 26, again, not only curiously, but amazingly all young, otherwise previously healthy gay men, not only from LA, but from San Francisco and New York City, who had a disease that was destroying their immune system.

Not only did they have pneumocystis, but they had Kaposi sarcoma, a rare tumor seen only in immunocompromised people and a number of other opportunistic infections. It was that sitting in my office in July of 1981, that quite frankly, and I don't mean to be melodramatic, actually transformed my entire medical career. Because I made a decision then that this mysterious disease had to be a brand-new disease, and it had to be an infection because epidemiologically, it was acting like a sexual transmitted disease, because of the circumstances of the people who had been reported. And certainly, it was destroying the immune system.

I had been trained in multiple years as a board-certified internist, a board-certified infectious disease person, and a board-certified clinical immunologist. And I felt, oh my goodness. This is a brand-new disease. And no matter how successful my career had been at this point, I felt an absolutely overwhelming, compelling need to study the disease.

So I completely turned around the direction of my career. I put together a small group of people who were training with me and we started bringing in, one after the other, a large number of these, which at the time still were almost exclusively young gay men with this disease, which was devastating them, because it was killing them literally within 10 months.

CHAKRABARTI: Dr. Fauci there's so much that I want to discuss about the challenges that you faced after having made that decision. And by the way, I appreciate your understatement about the successes you had before that. In your career, because those successes included turning the fatality rate of vasculitis, I believe, from it was like very, 90 plus percent fatality, you turn that around to, 90 plus percent survival rate within the new treatments that you had come up with.

But the thing is that the reason why HIV/AIDS is so transformative, not just for your career but for the country, is that not only was it a novel disease, a novel virus, but it challenged us politically as a country, and you faced a lot of heat from across the board, as you were working on trying to find a cure for HIV including from the gay community. So let me just play a little quick clip here. This is from a community meeting you had in New York with a group of gay men early in the AIDS crisis.

Yeah no, that's wrong.

But you keep saying I'm wrong. This is what I mean. You make a presumption on, I'll tell you why you're absolutely wrong.

ACTIVIST: Where is it? Where is it?

FAUCI: You go to a phone, you dial 1-800-TRIALS-AID and you ask them to send it to your home and they'll I will send you a packet of the data on that day. The data is available. We'll give you the data. I promise you, we'll give you the data. Do you think there's some conspiracy? You don't think it exists?

ACTIVIST: Do I think there's a conspiracy? Yes, I do think there is still a conspiracy. Really to not help in a lot of different ways.

CHAKRABARTI: Dr. Fauci, that's a very young you and the AIDS activists who were accusing you of, or accusing NIH also, and the Allergies and Infectious Diseases, of not providing data to activists on AIDS. I'm going to ask you to hold your thought there, because we have to head into a quick break.

But when we come back, I want to hear from you about the lessons that you learned in dealing with the public and dealing with politicians when trying to confront and find a cure for a radical and new disease.

Part II

CHAKRABARTI: Dr. Fauci, I'd love to hear your recollections of either that specific meeting that we just played a moment from, where AIDS activists are really confronting you about not being able to get data, and even accusing you or the public health establishment of a kind of conspiracy to not help them.

How, what did you learn in those many quite heated meetings that you had back then.

FAUCI: The bottom line of what I learned was something really important in my own development as a physician, dealing with patients on an individual basis, but certainly on a broader, more generic public health basis, is to listen to what the patient's needs are. So let me explain this as briefly and succinctly as I can. What happened is that with HIV and AIDS, the activist community was looking at their own personal situation. And the scientific community, and the regulatory community NIH, CDC, FDA, we were doing things that were well established over decades and decades, that served the public very well.

Very strict, rigid criteria and entry and exclusion criteria for clinical trials. The way research agenda is set, the care and meticulousness, but long period of time that it takes to approve a drug worked well for other diseases, but was particularly ill suited for HIV, where the people who became clinically ill had a median of 10 to 15 months to live, and the system just didn't work for them.

So they tried to get the attention of the community, the scientific and regulatory community, and was saying, we want to be part of the process. We want to see the data. We want to be part of the design of the clinical trials. We want to have input into the FDA's decisions about how long it takes them to approve a drug.

And understandably, but completely inappropriately, now retrospectively, the scientific and regulatory community said, we know what's best for you because we've been doing this for a long time. That didn't sit very well with the activist community, who at the time were almost exclusively all young gay men.

They began to do things to make sure we understood that they were serious. They became iconoclastic, disruptive, theatrical, and confrontative. And they attacked us. But since I was a very visible public figure, because I was one of the few people that was very proactively working on their behalf, even though to them sometimes it didn't appear that way, they started attacking me publicly.

The scene you just played was when I really extended myself. I went down essentially alone with one of my staff to the Greenwich Village Gay and Lesbian Community Center, sat down with them, about a hundred of them, just alone and unprotected and said, okay, let's hear what you have to say. And that exchange that you just played got a bit heated, but after a while, we began to talk to each other in a way that became very productive.

So I was the first person to essentially sit down and speak with the activists who were being disruptive as opposed to running away from them. They really appreciated that. And although we didn't agree on everything. As the weeks, months, and then ultimately years went by, we developed a collaborative relationship.

That was very positive in its impact on how we did clinical trials, on how the FDA modified their way of looking at things like compassionate usage of drugs. So at the end of the day, it was a very positive value-added experience that started off confrontationally, but turned out to be very collaborative.

CHAKRABARTI: Quite a learning curve, though, for you, because I think it's important for all us to collectively remember really how intense the despair was of the gay community then, because entire communities were being wiped out. You mentioned in your book, in the book On Call, that when you went to Greenwich Village, you were horrified, because as you walked around the streets there, you were literally seeing young men who were skeletons, like skeletons, they were walking death, essentially, because there was so much AIDS in the community.

And I think that's one of the reasons why, as you said, many AIDS activists felt that they had to be outlandish, confrontational, dramatic, as you said, because they weren't being heard. And I want to play another example of that. This is a voice that you know very well. It's the late Larry Kramer, AIDS activist and founder of ACT UP, who early on was fearless in the media of calling you a pill pusher, calling you incompetent.

The two of you later became friends, because you reached out to him, but I want to play a bit of Kramer from 1991 so that people can hear the kind of fiery passion that he'd often aim at you and actually presidents alike.

LARRY KRAMER: Plague! 40 million infected people is a [expletive] plague! And nobody acts as it is! As if it is! 40 million people in the [expletive] plague. Nothing is working. None of that [expletive] you saw on that screen is working. Nothing, none of the [expletive] that is in the pipeline that these people are studying is working. You heard what George Bush said when we went to Kennebunkport. He's more inclined to, he feels more sorry for the unemployed.

That's what we're in.

CHAKRABARTI: That's Kramer in 1991. Now here's the question I want to ask. We could just talk about that, though, Kramer, for a long time. But what I'm trying to learn from you this hour, Dr. Fauci, is how your experiences working on HIV/AIDS later on informed how you handled the other transformative pandemic, epidemic that the world experienced with COVID.

Because in hearing Kramer's passion there, many times you've had to testify on Capitol Hill regarding COVID. You encountered passion also. I'm not going to ever make an equivalence between Congresswoman Marjorie Taylor Greene and Larry Kramer. That's not what I'm doing. But in terms of how to respond and handle people who are extremely passionate and care a lot about a particular issue that you're studying in public health, how do you handle those moments?

What did you learn from your AIDS experience?

FAUCI: The one thing I learned, I learned many things, but the one really standout thing that I learned is that when you listen to people, even though they might be confrontative and theatrical in their style, that when I listened to the AIDS activists and heard what they were saying, it became crystal clear to me that what they were saying was making perfect sense.

And I immediately came to the conclusion that if I were in their shoes, I would be doing exactly what they were doing. And I would be very confrontative, if people were not listening to me. And it was that spurred me on to continue to listen to them. And the lesson learned not only for HIV, but for every other disease, for Ebola, for Zika, for chikungunya, for pandemic flu, and then ultimately for COVID, was that you have to listen to people.

You may not agree with them, but you really need to listen. But I really must point out, because you yourself brought it up, the confrontation back with HIV was what, I give the analogy, I call upon something that the iconic public, the iconic civil rights leader John Lewis said that we made trouble in the Civil Rights Movement, but it was good trouble.

And that's exactly what the activists with HIV did, they made trouble, but it was good trouble. I have to just make sure the audience appreciates that when you fast forward to 2020, 2021, 2022, the attacks on the medical community, by some of the extremists, including those in Congress, is not good trouble, because the activists were absolutely correct in trying to get our attention.

Whereas the attacks, for example, that you alluded to by people like Marjorie Taylor Greene, that's pure vitriol and pure ad hominem with no productive or value-added component to it. So I wouldn't want the listeners to think that there's comparability between the pushback in the '80s by the AIDS activists and the attack on science and scientists that we're seeing today.

It's a world of difference.

CHAKRABARTI: Yeah, no, agreed. That's why I was trying to just hear from you about, from your perspective, as being that person who, for both of these major transformative diseases, you were on that cusp between the scientific community and the public, right? And so how you manage both events. Now, similarly, there's the issue, and I'm approaching this conversation absolutely from the point of view of the public Dr. Fauci. And so there's this issue about how the scientific community talks to the public when trying to deal with the uncertainties of new diseases, right? You had to experience that a lot during the HIV/AIDS crisis.

So here is a moment with you, again a very young sounding, I should say, Dr. Fauci, on PBS NewsHour in 1985.

NEWSHOUR ANCHOR: Can you give any kind of an educated guess about how long it might be before some kind of cure is found?

FAUCI: Again, it's very difficult to do that. I can tell you that there are some agents that clearly have been shown to suppress the replication of the virus.

This is a very unique virus, because even if you block its ability to replicate, it also has the unique ability to hide or live within the cells. Such that you might suppress its multiplication, but you might not ever be able to completely rid the body of the virus unless perhaps the body's own defenses come in and do that.

CHAKRABARTI: Okay, so the reason why I wanted to play that Dr. Fauci is you answer a question with a sort of scientific and medical response. Because in retrospect, that's the right one. Essentially, we don't know. We're still trying to understand it. But the other reason we want to play it is that several decades later, in 2021, April 30th, 2021, another journalist, me, essentially asked you the same question about COVID.

And my excuse for not coming up with a better question than you heard on the NewsHour in '85, I was only 10 years old in 1985. (LAUGHS) So here's what I asked you on April 30th, 2021, essentially about herd immunity, and when would we know that we'd cross a threshold where COVID would no longer be a danger?

CHAKRABARTI: I know you've been through the ringer over the past year, but I hear you very strenuously trying to not answer a question here. So let me rephrase it. Let me rephrase it. You're advising the Biden administration. And certainly, the Biden administration, I know they're thinking about these questions because they've got to make announcements.

They've got to communicate to the people, the CDC, etc. What are you advising them on what they ought to be aiming for regarding getting COVID-19?

How we're going to know when COVID is under control.

FAUCI: You know, that's right. And I'm not, Meghna. I'm smiling because you're saying that I'm trying very hard not to answer your question.

I am answering your question. We don't know what that number is. We don't know what a number will be when you're going to have such control that people are going to feel comfortable about going out. We could give you a real number when there's no infection, when you've actually controlled it so that they're essentially so few infections, you could barely count them, but we don't know if that's going to be the case with the dynamics. So it isn't as if we're avoiding your question. We don't know the precise answer to that.

CHAKRABARTI: So that was April 30th, 2021, Dr. Fauci. I still stand by my question because people wanted to know the answer to that.

But what I want to put to you now is, I also think that the scientific community which I love, and all of my education is actually in science and engineering, hadn't actually learned much, with all due respect, from the AIDS crisis to COVID, about how to communicate to the public in the middle of a public health crisis.

So I'm wondering if now listening back to that, if you think there was a better way to talk about how to handle uncertainty when we are still learning the basic dynamics of a disease.

FAUCI: We always could do better, for sure, because we're not perfect and we could always improve upon everything, including our communication.

But listening to that clip, as I was smiling, you were saying, you're not answering the question, and you still didn't answer it. And I'm saying to myself, Because there's no answer. (LAUGHS)

CHAKRABARTI: You should have said that.

FUACI: The reason is, the proof of the pudding is it is now 2024 and we still haven't reached whatever that number of herd immunity is, because it doesn't exist for COVID.

I got infected a week and a half ago with COVID. I had been vaccinated six times and this is my third time that I've gotten infected. Thank goodness I recovered quickly, because of the help of vaccinations and prior immunity from infection. But the point that now has been absolutely proven is that we were trying to compare COVID, back when you asked me that question, to things like measles and polio.

And to get herd immunity, which is defined for the audience simply as a level of protection in the community, either from vaccination or from prior infection, so that the virus doesn't really have any wiggle room to spread from one person to another. That percentage of the community that needs to be protected, to protect the rest of the smaller percentage of the vulnerable community, varies from disease to disease. For measles, it's over 90%.

And the thing that makes herd immunity feasible for a disease is two factors. One, you have to have a virus or a pathogen that doesn't change that. It stays stable. Measles stays stable. The measles that I was infected with as a child is the same measles that's infecting people in the developing world even today.

The second characteristic is that when you get either infected, or vaccinated, the duration of the protection is measured minimally in decades and optimally for a lifetime. That's what measles does. No way does COVID do that. A) because we've already experienced multiple variants of COVID, from the original COVID through alpha, beta, delta, Omicron and multiple variants of Omicron. Number one.

So the first characteristic is not present. The second characteristic is that we know immunity to COVID is very transient. It's measured in months to a year. ... The fact that despite the fact that I've been multiply vaccinated, I got infected a couple of weeks ago. So we have to put aside. And maybe the best way, back then, I tried, when you answered that question, is I don't know what the number for COVID immunity is for herd immunity.