As long as I can remember, I have had a muted disdain for new administrative leaders who take over an institution and, before they really understand the place, feel compelled to make changes just to show that they are in charge. I decided right from the beginning that before I made any changes at NIAID, I would learn everything possible about the institute. I had been a basic scientist and clinical investigator within NIAID for fifteen years including my fellowship from 1968 to 1971, and I knew the science and clinical medicine as well as or better than anyone. But until this time, I had only supervised a small lab of about twenty people doing research very familiar to me with a total budget of a couple million dollars, and I had almost no classic administrative experience. Now I was leading a scientifically diverse organization of several divisions representing a wide range of research conducted by government scientists mostly on the Bethesda campus and by a much larger group of grantees and contractors at universities and medical centers throughout the country and to some extent the world. We had about eight hundred full-time employees and contractors with a budget of $370 million.
What I needed was to become the best possible administrator without losing touch with the science and the bedside, and I needed to do this quickly. Only when I knew the workings of the institute inside out could I feel comfortable in pursuing my vision for its direction. It took me about six months of sixteen-hour days before I felt qualified and confident enough to start articulating and implementing my vision. I visited all of the labs on the Bethesda campus and our satellite campus in Hamilton, Montana. I traveled throughout the country meeting the scientists and clinical investigators in the medical centers that NIAID was funding. I learned about budgetary planning and managing the balance between support of basic (in the labs) versus clinical (on the wards) research. I wanted to know more about the institute than any individual on earth.
Even though there were many fine people who were directors of various divisions within NIAID and who reported directly to me, I realized that to some extent I had taken over a sleepy organization. What was lacking among several of them was a palpable sense of urgency. Few were pushing the envelope to aggressively attack the problems of infectious diseases or even to realize the growing importance of and opportunities in the discipline of immunology and its relevance across all fields of medicine. In addition, there was little enthusiasm for expanding AIDS research among the aging senior staff. Conscious or subconscious homophobia in society might have contributed to this feeling; also, the existing pot of money was only so big. Others in the infectious disease community were concerned about putting too much emphasis on AIDS for fear that this would divert resources away from the diseases that they were studying. At that time roughly 25 percent of all deaths worldwide were due to infectious diseases, making them the second leading cause of death worldwide and the leading cause of death among young people from birth to forty-nine years old. In the developing world, particularly in sub-Saharan Africa, with malaria, tuberculosis, respiratory diseases, diarrheal diseases, and the gathering storm of HIV/AIDS, infectious diseases were the leading cause of disability-adjusted life years—the number of years lost to disability or premature death. In addition, there was the ever-present threat of a pandemic influenza outbreak. Given all of this, I asked myself, why was NIAID only the sixth-largest institute among what were then the eleven institutes at the NIH, and why was the NIH not crying out for more money for NIAID?
The time for me to act had come.
I learned quickly that it was not good form and in fact could get you in trouble if you asked for more money than was in the president’s proposed budget for a given fiscal year, or if you even suggested publicly that the proposed budget, which was handed down to directors with little of our input, was not sufficient for the job at hand. This was referred to as budget busting. I began to appreciate that there was a fine line between busting the budget and articulating in an appropriate setting, such as in scientific lectures that would be picked up by the press or by direct discussions with congressional staff, the legitimate need for more resources. It was a fine line, but I walked it—budget-busting lite. As long as I defended the president’s budget publicly, I saw nothing wrong with my articulating the importance of more resources to meet public health needs. If I did not ask for it, for sure we would not get it.
A fiscal year (FY) in the government runs from October 1 of the previous year to September 30 of the designated year. When I arrived as director of NIAID in November 1984 (FY 1985), the NIH budget was $5.149 billion, and the budget of NIAID was $370 million, with the total AIDS budget at $66 million. By comparison, the budget of the National Cancer Institute was $1.18 billion. AIDS in the United States was at that moment predominantly restricted to gay men and injection drug users. In other words, unlike cancer, AIDS was not a “generalized” epidemic in the United States, and most of the general population was not particularly concerned at the time. Even so, it was crystal clear to me that this amount of money was woefully inadequate considering the seriousness of this explosively emerging threat.
I then did something that to my knowledge had not been done before by individual institute directors. I pushed hard for a doubling of the AIDS budget among selected members of Congress, the Reagan administration, and constituency groups, and to my surprise I got it. The NIH received $147 million for AIDS research in FY 1986, an increase of $81 million over FY 1985. This was the largest single increase in any particular discipline for that year, and it was all additional and not redistributed funds, thanks to the support of both Dr. Wyngaarden and the HHS secretary, Margaret Heckler, and of course the U.S. Congress. I was thrilled. We were at last showing a degree of financial commitment to HIV/AIDS research, even though our needs for additional resources would continue to grow dramatically.
That experience taught me crucial lessons. Just because no one had ever done something like this before did not mean it could not be done. I also realized how important it was to cultivate relationships with people who are in a position to make things happen. Importantly, to win over the skeptics, I learned that the cause for which you are advocating must be legitimate, worthy, and not motivated by self-interest; your arguments must be evidence based; and you must be truthful and consistent in your reasons for asking for resources. People quickly see through anything less than that.
We used the additional resources we had just obtained for AIDS research and also began a massive drug-development program as well as started the task of trying to develop an HIV vaccine.
Now that my job had grown from lab chief and clinical investigator to director of NIAID, besides pushing for more resources, I wanted to see for myself what AIDS in the “real world” outside the NIH looked like. I decided to visit the epicenters of the epidemic. First, I went to Greenwich Village in lower Manhattan.
Greenwich Village occupies a special place of affection in my psyche. Both my parents were born in Little Italy within walking distance of the Village. I remember that when I was a young boy, my father brought my sister, Denise, and me to see the small apartment building on Elizabeth Street between Hester and Grand Streets where he was delivered by a midwife in 1910. My mother was born about a mile away on Bleecker Street and Sixth Avenue. I recalled my impression as a child of the vibrancy of the Village as my father took us through Washington Square Park. As a student at Regis High School in upper Manhattan, I occasionally took the subway to the Village with friends to experience the excitement of the streets. The young lady that I took to my high school prom lived in Greenwich Village on Waverly Place and Sixth Avenue. As a medical student, medical intern, and medical resident in the late 1960s and early 1970s, I liked to go to the Village to listen to folk music and jazz at places such as Gerde’s Folk City, the Village Gate, and the Village Vanguard. To me, these blocks were part of my DNA, part of my heritage. Every association and memory that I had of the Village was of joy, vibrancy, and entertainment.
But now I was shocked. By 1985, I had already taken care of hundreds of AIDS patients at the NIH. I was intimately acquainted with the devastating nature of their illness. However, that was in a clinic and hospital setting where I was wearing a starched white physician’s coat with a stethoscope hanging from my neck. Here I was a pedestrian observing very sick people walking the streets. I could not believe what I was seeing as I meandered through Washington Square Park along Waverly Place, across MacDougal Street, and up through Christopher Street. I could easily spot several young men with AIDS as I passed by them. The telltale dark spots on their faces due to Kaposi’s sarcoma, what people used to refer to as gay cancer, easily identified them. The drawn faces and appearance of physical wasting were now all too typical. The positive electricity of the neighborhood had been replaced by an atmosphere of pain, suffering, and imminent death. A dark and ominous cloud had settled over Greenwich Village. I went on to visit the clinics of my medical colleagues at Bellevue Hospital and Memorial Sloan Kettering in Manhattan and Downstate Medical Center in Brooklyn. In those hospitals, 20 to 40 percent of the beds were occupied with AIDS patients.
The same was true when I visited San Francisco. A walk through the Castro District or just standing on the corner of Castro and Eighteenth Streets was strikingly similar to the Greenwich Village scene. My friends and colleagues at San Francisco General Hospital were being deluged with AIDS patients similar to the experience in New York City and our experience at the NIH. It was clear to me that we needed to establish a highly focused research effort on AIDS.
There had never been a research program in NIAID that was devoted to a single disease, and there was considerable pushback to my creating one. Nonetheless, I went ahead and did so, establishing a separate Division of AIDS within NIAID, and not surprisingly this stirred resentment among the older generation of infectious disease scientists. This was my first real introduction to the sometimes painful process of leadership. I rejected the concept held by many that I was paying too much attention to a disease that had afflicted only a few thousand people in the United States and that many still thought would probably disappear in a year or two. I learned in this instance and in several situations over the coming years that a leader, particularly in an area of controversy, cannot make everyone happy all the time. If you do, you are probably not a good leader and you soon will not be respected. Having doubled the AIDS budget and created the Division of AIDS, I now faced the challenge of having to persuade the White House, HHS, and Congress to put even more resources into AIDS research so that we could further entice the best among the scientific and public health communities to join the struggle.
Besides scientists and clinicians, others would soon join the mounting response directed against HIV/AIDS. Some stood out much more than others. One was a pediatric surgeon who initially had little interest in AIDS.