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"I saw people who were in pain"

One of the country’s most visible and admired physicians and the director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, Anthony S. Fauci, M.D.,’62 has led the fight against AIDS and, in the process, won the trust and respect of his one-time opponents.

By Donald N.S. Unger

Anthony S. Fauci, M.D., ’62One of the signal features of AIDS activism in the late 1980s was the vociferous attack mounted against federal agencies, like the Centers for Disease Control (CDC), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH). These agencies were accused of doing too little, doing it too late, and often, of handcuffing individual doctors and people with AIDS with medical regulations that were too cumbersome to deal with a fast moving and deadly epidemic.

One of the most frequent accusers in this dialog was writer and activist Larry Kramer, founder of Act Up, the AIDS Coalition to Unleash Power, an organization founded in New York City in March of 1987, with the avowed purpose—as its name implies—of taking a tactical line that might better be described as uncivil disobedience.

One of the most frequent targets of Kramer’s rhetoric, and of Act Up protests, was Anthony S. Fauci, M.D., ’62, the federal government’s chief point man in the fight against AIDS, who has headed the National Institute of Allergy and Infectious Diseases (NIAID) at NIH since 1984.

By October of 1992, however, a curious series of things had happened: When the Circle Repertory Company premiered Kramer’s play, The Destiny of Me, that month at New York’s Lucille Lortel Theater as a benefit for Gay Men’s Health Crisis—another organization which Kramer founded—Fauci was in the audience.

On stage, most of the play is seen from the point of view of the hospital bed of Kramer’s stand-in, the character Ned Weeks, an AIDS patient undergoing experimental treatment, who spends a chunk of his time berating or sparring with his primary caretaker, Nurse Hanniman, or with her husband, Weeks’ physician, the hospital administrator, Dr. Anthony Della Vida—Dr. Life—and no reasonably informed member of the audience could have failed to identify the model for the character.

These days, Kramer and Fauci describe each other as friends; when Kramer is in Washington, Fauci takes him out for Italian food.

While this rapport might at first seem unlikely, the fact is that AIDS activists and medical researchers—whatever disagreements they had and continue to have about pace, funding or methods—share, and have always shared, a common goal.

Clarifying that, and moving an often sclerotic and stubborn medical establishment—both its public and private arms and its formal and informal practices—has been a key part of what success there has been in fighting AIDS in the United States in the past two decades.

Fauci has been one of a handful of people, in the higher reaches of the medical establishment, at the fulcrum of that change.

Brooklyn Born and Bred
Anthony Stephen Fauci was born in New York City on Christmas Eve 1940, the second of Stephen and Eugenia Fauci’s two children. His parents, both the children of immigrants, met as students at Brooklyn’s New Utrecht High School and married when they were just 18. He grew up in Bensonhurst, Brooklyn, where his father, a Columbia University educated pharmacist, owned a neighborhood drugstore, at 13th Ave. and 83rd St. The family lived in an apartment above the store, and all pitched in when needed—his father in the back, his mother and older sister, Denise, at the register.

“I was delivering prescriptions from the time I was old enough to ride a bike,” Fauci recalls.

Routinely cited in recent decades for the length of his work day and the peripatetic nature of his job, Fauci took on these habits early and came to them naturally. He was that kind of kid, too.

He grew up surrounded by disparate influences that he seems to have enjoyed and that seem to have benefited him: There was his pharmacist father, known as “Doc” in the neighborhood—whom he describes as “laid back”—and his mother, also college educated, whom he describes as “goal oriented.” There was an attraction to medicine and science fostered from an early age, and a commitment to the humanities nourished by premedical studies at Holy Cross that also encompassed the study of Latin, Greek and philosophy.

And there is early evidence, as well, that Fauci had a streak in him that was something between puckish and perverse—a stubborn adherence to his own values and interests in the face of local prejudice that had to have been fierce. Growing up in post-war Brooklyn, playing baseball in Dyker Heights Park, on Gravesend Bay, in the era of Jackie Robinson and Pee Wee Reese, Fauci was a Yankees fan. Among his heroes were Joe DiMaggio and Mickey Mantle, which, he says, made him something of a sports outcast among his friends, Brooklyn Dodgers fans all.

If he had been a sports outcast, he was an athletic one. In a 1989 interview with the NIH Historical Office, he remembers, “We used to play basketball from the beginning of basketball season to the end, baseball through the spring and summer, and then basketball and football again in the winter.” When he was younger, he played CYO basketball in the neighborhood; in high school, he captained the basketball team. Today, he’s a daily runner who has completed the New York and Marine Corps marathons.

He attended Regis High School, a Jesuit school on Manhattan’s Upper East Side. And the distance he had to travel to get there is difficult to explain, for reasons of time or geography and also for reasons of culture. Time and geography matter, of course, in multiple ways: the trip took 75 to 80 minutes each way, a bus and three subways during rush hour in both directions. By rough calculation, all the time he spent commuting during his four years at Regis, it cost him more than 70 days. And he didn’t just let the time go: then, as now, he was focused and organized. He was the kid on the subway—packed up against the other passengers, elbows against his body, wrists and forearms folded inward, a book almost on top his face, reading—in his case, probably Ignatius Loyola, at some point or other, and likely in Latin.

Time and geography also matter because Brooklyn was further away from Manhattan in the 1940s and 1950s than it is today, and Bensonhurst is deep Brooklyn, just a short three or four miles—a few stops on what was then the BMT Seabeach local line—from Coney Island and the beach. New York is New York, but it’s also five boroughs and a million neighborhoods. And working class, Italian and Jewish Bensonhurst, might as well have been 15 light years away from Manhattan’s Upper East Side, then, as now, one of the country’s most affluent zip codes.

The Nefarious Act of Reading
In his commencement address this past May, U.S. Poet Laureate Billy Collins ’63—whose time at Holy Cross overlapped with Fauci’s, although they didn’t know each other—spoke with some nostalgia of the 10 o’clock dorm curfew of that era, and how students learned to “black out” their rooms with towels, newspapers and tin foil.

“It was behind these drawn shades,” Collins said, “that we indulged in the nefarious act of reading.”

Fauci came to Holy Cross in the fall of 1958. He played intramural sports when he had the time, but his days of more organized competition were over. He had entertained the vague idea that he might make the basketball team as a walk on, but the competition was fierce, and he didn’t quite have the height. Always a fully engaged student, moreover, he took to his premedical studies with gusto; “the nefarious act of reading” didn’t leave him a lot of spare time.

“There was a certain spirit of scholarship up there,” he remembers, “that was not matched in anything that I’d experienced. The idea of seriousness of purpose—I don’t mean nerdish seriousness of purpose—I mean the importance of personal development, scholarly development and the high standard of integrity and principles that became a part of everyday life at Holy Cross. And that, I think, was passed down from the Jesuits and from the lay faculty to the students.”

The premed program covered enough science to get the students into medical school, but also stressed the humanities—a continuation, in some ways, of what he had been taught in high school. Fauci often credits part of his professional success to the inculcation of Jesuit intellectual rigor that was a core part of his education: an emphasis on organization and logic, on succinctness and clarity of expression. Arguably, the twinning of science and the humanities has proved useful in his dual roles as physician and researcher as well.

Summers, he worked construction in New York, balancing personal and scholarly development with a measure of dust and grit. In the summer of 1961, before returning to Holy Cross for his last year, he was part of a crew working on a new library for the Cornell University Medical College (now the Weill Medical College of Cornell University), about six blocks east and 15 blocks south of his high school alma mater. He recounted the following anecdote at the Medical School’s centennial celebration in April of 1998, and it was recently reported in the Regis Alumni News:

“One day during lunch break, while the rest of the construction crew was sitting along the sidewalk on York Avenue eating their hero sandwiches and making catcalls at the nurses who were entering and leaving the hospital, I snuck into the auditorium to take a peek. I got goose bumps as I entered, looked around at the empty room and imagined what it would be like to attend this extraordinary institution … After a few minutes at the doorway, a guard came and politely told me to leave since my dirty construction boots were soiling the floor. I looked at him and said proudly that I would be attending this institution a year from now. He laughed and said, ‘Right kid, and next year I am going to be Police Commissioner.’”

Fauci received his M.D. from Cornell in 1966. He was ranked first in his class. There is no record of what sort of footwear he chose for commencement. Howard R. Leary was New York City’s Police Commissioner in the spring of 1966. There is no record of his ever having worked security at Cornell.

A Professional Lifetime in Public Service: Researcher, Physician, Administrator
Fauci has spent his entire professional career at the National Institutes of Health. He started as a clinical associate in the Laboratory of Clinical Investigation at the National Institute of Allergy and Infectious Diseases (NIAID) in 1968, after a two-year residency at The New York Hospital-Cornell Medical Center. By 1974, he was head of the clinical physiology section of the lab. In 1980, he became chief of the Laboratory of Immunoregulation (a position he still holds) and since 1984, he has been the director of NIAID.

The lab work that has dominated one major facet of Fauci’s professional life isn’t necessarily what lay people imagine. On a day-to-day basis, “doing science,” as a lot of researchers casually refer to it, encompasses most of the same administrative, and even promotional, frustrations as running a small business. Added to that are the imperatives of academic and scholarly progress: “publish or perish.”

Dr. Peter Warburton, a molecular biologist who runs a lab at the Mount Sinai School of Medicine in New York, puts it this way, “Running a research lab is supposed to be fun; you’re doing science, working hard but focusing on your research, which hopefully you love and find endlessly fascinating. But when you finally become successful enough to get your own lab, reality clicks in, and you find out how much administrative work is required to run a lab, and how little time is left to actually do the science. Suddenly, not only do you need to be a scientist, graphic artist, technical author, public speaker and politician, you also need to be a personnel and business manager—and an accountant, usually with a budget of several hundred thousand dollars a year.”

For Fauci, of course, the budget numbers are rather larger, as noted below.

At the same time that he has continued to do lab research, however, Fauci has never stopped seeing patients—and he has continued both of those kinds of hands-on work—as his administrative duties have increased, along with their attendant political and media responsibilities. While others have sometimes characterized this as a difficult juggling act, Fauci has always stressed the benefits. Others have noted them, on occasion, as well.

In 1990, for example, journalist Randy Shilts, who would later write an important memoir of the early years of AIDS, And the Band Played On, wrote caustically in the San Francisco Chronicle of researchers who no longer did research, but singled out Fauci as an exception: “Although the federal government’s leading AIDS celebrity, Dr. Anthony Fauci of the National Institutes of Health, actually goes into his immunology lab in Bethesda to work with test tubes, a lot of the people you see quoted on TV as major laboratory researchers don’t. They have assistants don white coats and do all that tedious work, even though they’re the ones Dan Rather chats with once the results are in.”

Politically, Fauci has overseen a huge increase in the budget of NIAID. Figures in Government Executive Magazine put the Institute’s 1984 budget, at the beginning of his tenure, at about $357 million per year; the 2003 budget will be approximately $3.9 billion. In comparative terms, NIAID had moved from taking up 7 percent of NIH’s budget to taking 14 percent, and from the sixth highest funded Institute to the second.

While a great deal of attention has been focused on his work on AIDS, Fauci’s scope is much broader than that, as evidenced at the beginning of this year when he was one of the most visible of the government officials publicly discussing the threats posed by anthrax and other possible bio-terror weapons. His is the timbre of voice that one wants to hear in that sort of atmosphere: calm, reassuring, but not falsely so. He spoke the facts and had a credible record of speaking the truth under difficult circumstances.

The balancing act that he has accomplished between the various parts of his career is underscored as much by what he has not done as by what he has done. Twice, during the presidency of George H. W. Bush, he was offered the position of director of NIH, and twice, he turned the position down; on the second occasion, he did so in the Oval Office.

How AIDS Changed Medicine
It’s easy to forget, some 20 years into the AIDS epidemic, both how terrifying and chaotic the early onslaught of the disease was, and how much AIDS activism has percolated through our approach to other diseases, changing in many ways the entire doctor-patient relationship in the United States, and the ways in which drugs are tested and approved and research is funded.

As Fauci describes the pre-AIDS attitude of the medical establishment: “It was not traditional or acceptable for anyone to question what physicians or public health personnel did. ‘We knew better; therefore it should be done this way.’” Period.

AIDS changed that, he says.

“With the HIV epidemic came the birth of a certain form of activism that demanded participation in the decision making,” he says, “particularly when it was dealing with a deadly disease, for which there was no treatment.”

But those changes were not instantaneous, of course, nor were they consistent—neither within the clinical practice of medicine, nor within the medical research community. It’s easy, in retrospect, to say that “unnecessary” bureaucracy shouldn’t hold up the release of “crucial” medication. But what do those terms mean without the words “safe” and “effective”?

The relationship of doctor and patient is similarly complex. Most people would count it as progress that, over the past 20 years, physicians more often have been socialized to interact with than to dictate to their patients. And the AIDS crisis has been a key part of moving medicine in this direction. At least in the beginning, it leveled the playing field: doctors often knew no more than their patients, who were then motivated to go out and find their own answers. But taken to the extreme, this leveling of the doctor-patient relationship can feel like an abdication of responsibility.

The first wave of the epidemic, in gay enclaves on both coasts—places like Greenwich Village, West Hollywood and San Francisco—was heralded by a mix of patient complaints both esoteric and mundane: a rash of otherwise healthy young men coming down with normally rare diseases like Kaposi’s sarcoma and pneumocystis pneumonia, odd yeast infections, suffering inexplicable immunological failures; another group in the same cohort suffered with chronic fevers, night sweats, swollen glands, illnesses sometimes transient, sometimes not, again without good explanations and not responsive to treatment.

This was frightening, first and foremost, of course, to the people suffering from the disease, who, in the beginning, didn’t even have a name for what they were going through. That fear and concern quickly spread through the local communities that were hardest hit and into the population at large.

One of the early problems that the disease spawned was discrimination against the people who contracted it, and an early reluctance in some quarters to treat AIDS as “everyone’s problem.”

As Fauci puts it, “It was and is a combination of a real disease in the classic sense, a huge societal problem with disenfranchised populations, an ethical issue, a social issue, a very charged political issue, with conservatives early on … not really wanting to recognize that this is something that we should pay attention to—probably because the subjects of the disease were people who were disenfranchised.”

Immediately, this put public health officials dead center in an agonizing struggle.

Walking Among Them
Carol Brown Moskowitz, a research nurse and neurological nurse practitioner, recalls running into a group of leather-clad men, many of them body pierced and draped in chains, in the lobby of Washington’s Omni Hotel, in the fall of 1988. They looked as if they might be members of a motorcycle gang, but the Omni seemed an unlikely place for a biker convention.

When she asked one of them who they were, he told her that they were members of “Act Up,” and that they were going out to make some noise at the FDA about the AIDS epidemic and the lack of funding for research.

Make some noise they did. On Oct. 11, about 1,000 demonstrators descended on the FDA facility in Rockville, Md., for some nine hours and shut it down; there were almost 200 arrests.

A smaller group splintered off and headed out to Bethesda, to the NIH campus.

What Fauci remembers about the demonstration, and the demonstrators themselves, was the sense of layers: theatricality, genuine anger, but also an underlying core of pain.

Like Carol Moskowitz, he mentions their clothing first.

“They were dressed funny; they had all these strange outfits; and they were screaming and cursing and yelling,” he recalls. “And I looked at them, and I saw people who were in pain. I didn’t see people who were threatening me, I saw people who were in pain. And that’s exactly what I saw, and I was very moved by the pain. Boy, they must really be hurting for them to do this. And I think I conveyed that to them, and they saw that that’s how I was feeling toward them.”

Fauci asked the police and the FBI on the NIH campus not to make arrests. He also asked that a handful of the demonstration’s leaders be brought to his office.

“That began a relationship over many years that allowed me to walk amongst them,” Fauci says. “It was really interesting; they let me into their camp. I went to the gay bath houses and spoke to them. I went to San Francisco, to the Castro District, and I discussed the problems they were having, the degree of suffering that was going on in the community, the need for them to get involved in clinical trials, since there were no other possibilities for them to get access to drugs. And I earned their confidence.”

It was in San Francisco, in February of 1989, that he met Terry Sutton, a former school teacher, who was losing his sight to cytamegalovirus, one of the secondary infections then common among AIDS sufferers. The infection, it was already known, could be treated with the antiviral medication ganciclovir, but the FDA had not yet approved the medication for release.

The meeting was arranged by Martin Delany, the founder of San Francisco’s Project Inform, which had been on the leading edge of getting both information and medication—often imported illegally from other countries—to people with AIDS at a time when the government approval process was perceived to be too slow.

“I arranged for Tony to come to the Hilton Hotel, to meet some people face to face,” Delany remembers. “It was sort of based on the feeling that if people like him would just get in the face of people who were really sick and desperate over some of these regulatory issues, it might change how they felt about them … That was how he connected to them. And you could see clearly that he was moved emotionally by that.”

Less than four months later, in June of 1989, at the 5th International AIDS Conference in Montreal, Fauci publicly spoke out in favor of releasing ganciclovir to people who needed it, and by the end of the month, the FDA had reversed course and done so.

In the face of Fauci’s public change in position, they’d had little choice.

Delany also points to the 6th International AIDS Conference in San Francisco the following year as a time that solidified a more positive view of Fauci in the activist community. This was also part of a broader series of moves undertaken by the researchers and public officials fighting the epidemic to take account of the activists and people with AIDS: a number of free passes to the conference were offered to activists, community members and people with AIDS, who couldn’t afford the $550 cost of admission. There were nightly debriefings and question and answer periods held at a local public auditorium for people not attending the conference—one of them run by Fauci. Researchers joined an AIDS rally in downtown San Francisco, where conference organizer and AIDS researcher, Dr. Paul Volberding, told the crowd, “The apparent divisions between us are not real.”

Undoubtedly, what Volberding had said was true as a matter of spirit: everyone there was united in a desire to see the disease conquered. What had changed significantly, between Montreal and San Francisco, was the degree to which that process was to be overtly open to patient input. In Montreal, Act Up protesters had seized the stage; in San Francisco, they’d had a place on the stage. Some joked that rioting had now been given an official slot on the program.

This approach was not without its detractors, nor was a loosening of the strictures on the release of new drugs universally seen as a good thing. Many researchers worried that it would now be difficult to get people to enroll in well controlled clinical trials, and that the data from people who did enroll might be contaminated by exposure to a broad variety of untested medications. By managing to walk a line between conflicted constituencies and work at redrawing those lines, often under heavy fire, Fauci has succeeded as an administrator.

When to Take a Punch
Observing the strategic tussles between Kramer and Fauci in the ’80s and into the early ’90s, one might liken them to the Punch and Judy Show, with Kramer always in the role of Punch—and with a real bat. But this would be to misunderstand what was going on, as, ironically, the dramatist Kramer sometimes seemed to do.

One can see Fauci’s awareness of the dynamic of his relationship with Kramer in an article Natalie Angier wrote in The New York Times in February of 1994:

And through it all, Dr. Fauci accepts the criticisms, and he accepts that someone must absorb the anger and terror that AIDS has spawned, so why not somebody of strong vertebrae who was raised on the streets of Bensonhurst? “I was on a C-SPAN program a couple of months ago with Tony, and I attacked him for the entire hour,” said Mr. Kramer. “He called me up afterwards and said he thought the program went very well. I said, ‘How can you say that? I did nothing but yell at you.’ He said, ‘You don’t realize that you can say things I can’t. It doesn’t mean I don’t agree with you.’”

Dr. Fauci claims he does not take the intermittent blasts personally. “That’s the activist mode,” he said. “When there’s a disagreement their tendency is to trash somebody. But I know that when Larry Kramer says the reason we’re all in so much trouble is because of Tony Fauci, he’s too smart to believe that.

“I don’t want them to change or compromise that mode,” he added, “as long as they don’t ask me to change my opinions.”

What Fauci has accomplished over the course of his war on AIDS is nothing short of amazing: he has managed to build a bridge between deeply antagonistic constituencies, working all the while under the relentless glare of media scrutiny. And he has built that bridge using the tools he spent a lifetime cultivating—a tireless work ethic, a scrupulous honesty and an abiding sense of compassion.

Where Does He Get the Energy?
It also helps that he has a spouse who shares his goals and values. Fauci is married to Christine Grady, who completed her bachelor’s degree, with a double major in nursing and biology, in the mid-1970s—although she might have gone premed instead. She returned to Georgetown University more than a decade later, completing a Ph.D. in philosophy and bioethics in 1993. She currently heads the section on human subjects research in the department of clinical bioethics at NIH.

In a 1997 interview with the NIH Historical Office, she describes how she and Fauci met. Grady had spent two years in the early 1980s working as a nurse educator and manager of ambulatory care for Project Hope in Alagoas, Brazil; when doctors needed someone to translate for a Portuguese-speaking patient at the NIH hospital where she was working, they knew who to ask.

“I met him (Fauci) here over the bed of a patient who happened to be from Brazil. I was called in as a translator because this man wanted to go home, and they were afraid to let him go home because the guy had vasculitis. His vasculitis was not in great control. And so they said, ‘Could you come translate for Dr. Fauci?’ whom I had not met—the inimitable Dr. Fauci— everybody was afraid of. When he came in, I thought, ‘What are they so afraid of him for? He is not so scary.’

“But it is actually a great story because Tony, in his very serious way, said, ‘Make sure that you do your dressings every day and sit with your leg up,’ and I forget all the details. But I translated that to the patient, and the patient said, ‘You are kidding. I am so sick of being in this hospital. I am going to go home, I am going to dance all night, I am going to go to the beach, I am going to do this.’ So I think to myself, ‘How am I going to do this?’ So I turned around to Tony and said, ‘He said he would do exactly as you said.’ I kept a straight face all the time.”

When Grady was called to his office later that day, she figured that she had been found out. As it happened, the inimitable Dr. Fauci just wanted to ask her out on a date. Married for 17 years now, they have three daughters, ranging in age from 10 to 16. As a couple, they are in a better position than most to understand each other’s work. During her career, Grady not only worked with AIDS patients in the early years of the epidemic, she also educated other nurses about caring for patients with AIDS. Her doctoral dissertation, published in book form in 1995, is titled The Search for an AIDS Vaccine: Ethical Issues in the Development and Testing of a Preventive AIDS Vaccine.

No fast take on the Faucis’ family life seems to be complete without the notation that they tend to all eat dinner together around 9:30 every night—testimony both to their busy schedules and to the importance that they ascribe to spending time together.

One might ask: Where does Fauci—the researcher, clinician, administrator, politician, husband, father—find the energy? The truth is the good doctor, like a long-distance runner, seems to thrive on his efforts.

When asked about his multiple roles in the fight against AIDS, he responds by discussing the multifaceted character of the disease:

“It was complex. It was a health problem; it was an ethical problem; it was a legal problem—the legal rights of these people. And I just felt that if this problem needed to be tackled, I couldn’t be completely unidimensional about it. And the more I got into the other issues, the more interesting it became, because they were all linked with each other.”

It doesn’t seem to occur to Fauci that he is doing the work of three people. For him, the key word is “interesting.” Fauci is doing what he wants to do. On all fronts. And, for the most part, it appears he always has. For his part, this makes him, among other things, an extraordinarily fortunate man; and he knows it.

Anthony S. Fauci, M.D., ’62 Sidebar >

Donald N.S. Unger is a New York City born writer of fiction and nonfiction and a political commentator for NPR affiliate radio WFCR. He lives in Worcester.

 

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