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Authors: Jay Neugeboren

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After his return to the States, he continued teaching and doing clinical work at Harvard and in Roxbury, becoming, among other things, coordinator of clinical training for infectious disease at Beth Israel, Children's Hospital, the Sidney Farber Cancer Institute, and Harvard Medical School. The Black Panther Party gradually disintegrated, and in 1981, when a new chief of medicine came to Harvard and brought his own infectious disease people with him, Jerry decided to leave.

“Life is not a controlled experiment,” Jerry says. “There's no way of proving whether you went in the right or wrong direction. It was a very hard move—traumatic for us personally. We'd been in Boston for thirteen years, and had close friends there, and we were integrated into both the medical and political community. We also had three children by then—our first two, as you know, Elisabeth and David, were adopted from Colombia, and then we had Sarah—and
they were one, two, and three years old. But we decided to start all over again in New York.

“It seemed like an appropriate job for me, at Montefiore, and at Einstein—being involved with infectious disease and the training of doctors—and the first month I attended there, there were three patients who had this rare new thing called
Pneumocystis carinii pneumonia
that I had never seen before. Now, I'd been in Africa and the Middle East—there were
lots
of infectious diseases in Israel—and at Bellevue, and here and there and everywhere. And somehow I knew from the very beginning that this was something new and different and bad, and that it was going to be very big.”

Jerry talks about how, sad to say, he was the right person in the right place at the right time: everything in his life, personally and professionally, had prepared him for the work that would consume him from this point on—he was an infectious disease doctor, he had trained in public health, he had been overseas, he had worked with poor people, he had thought for many years about ways in which biology was bound up with behavior and social forces.

“I like to use the analogy of the seed and the wind,” he says, “with the seed being HIV, and the wind being what's changed in terms of social, economic, and personal conditions that have resulted in the conversion of what was probably a local pathogen into a worldwide pandemic. Because if you look at all the routes of transmission of HIV that we understand—blood-borne, sexual, and birth—the thing that has changed and has resulted in the enormous spread of HIV are largely events of the last twenty-five to forty years of human history.

“The most obvious one is the acceleration of international travel and the ability of people, and hence pathogens—like seeds—to travel from one place to another. Did you know, for example, that HIV was introduced in Japan through American-made Factor VIII, which is used for hemophiliacs? Even precious body fluids like blood and blood products travel all over the world now, whereas in the old days it was very local. If you had an uncle in the hospital who needed a transfusion, you called the family, and everybody came in and donated blood.

“And then there was what I can only call a diabolical alignment of forces that occurred just before HIV entered into the population of people who were injecting drugs.”

Jerry describes how a series of public health measures designed to reduce heroin use by making needles and syringes less readily available—paraphernalia laws that resulted in imprisonment if one was caught with needles and syringes—led to the sharing of needles, and to the development of “shooting galleries,” where you paid a dollar or two for a needle and syringe, injected the drug, and returned the paraphernalia, which was used by the next person, and then the next person.

But such sequential anonymous needle sharing was only one of the elements that led to the explosive spread of HIV, and Jerry lists others, among them the bathhouses used by gay men, the rise in anonymous sex that accompanied sexual liberation, and the detribalization and urbanization in developing nations following World War II that broke down traditional structures, and that resulted in social disruption—large populations of men, separate from women, migrating, becoming concentrated in urban areas, and contracting and transmitting disease.

Jerry says again what he has said before: “You can look at every route of transmission and you will see that what explains the transmission of each route has something to do with how we live as human beings more than it does with the biology of the organism.”

It is this understanding of disease that informs the way Jerry has approached his work as an AIDS doctor for the past two decades.
*
Like my other friends, however, he did not start out intending to become a doctor. At Columbia, he had been an undergraduate history and sociology major, and when he graduated in 1959, he entered Columbia's graduate program in sociology.

“Somehow or other, I thought of sociology as being social
activism—
as something that would
change
society, which is what I wanted to do,” he says. “I spent some time at the Institute for Social Research, with Paul Lazarsfeld and others, and I quickly learned what sociology was, at least the way it was practiced there, and it was mostly statistical—market research and opinion polls and stuff like that, and I knew pretty soon that this wasn't what I wanted.

“In truth, I was quite a confused and unhappy young man then. But I kept asking myself, ‘What can I do personally?' So I spoke with some people and came to believe that I could be the kind of sociologist I'd wanted to be, on a one-to-one basis, if I were to become a doctor. And I guess that in some sense this is what my career in medicine has been—that medicine has allowed me to be the person I am. So I chose to go to medical school both as a personal decision, but also as a choice that meant being involved in social activism. I'm not the kind of person who would lead a political movement, especially one that was without a personal basis, so that from the first there was never any question but that I would care for people, and in so doing exercise my politics through medicine.”

Jerry talks with passion about the global politics of AIDS. He is outraged by the greed of drug companies, and by the restrictive policies of our own government and other Western nations regarding the dissemination of drugs, and he has his own ideas about what might be done, on an international level, to address the enormous needs of those suffering from AIDS in the developing world. He has begun writing and speaking about this, believing that while he is doing the work on an individual and personal basis, he should also be trying to figure out ways of affecting the larger forces that affect health care.

“So I guess I'm trying to figure out ways of influencing the larger systems—where power resides. I mean, think of it this way: what does a Jewish doctor who is white and whose parents lived through the Holocaust feel is our ethical responsibility to forty million people dying in Africa? And how do we begin to address that, politically, in the midst of our affluence? Now, I'll let the politicians figure out the strategies, but I can give them some medical advice, and this is what I've begun to try to do.”

After Jerry dropped out of the graduate sociology program at Columbia, he enrolled in Columbia's School of General Studies, and, while living at home in Brooklyn with his parents, took the pre-med courses he had never taken as an undergraduate. He was accepted into the New York University School of Medicine (Bellevue) and began his studies in the fall of 1960, at the same time that Phil and
Rich, who had begun medical school there the year before, were starting on their second year.

Jerry shakes his head, as if bewildered to be looking back so many years. “Oh I was a very confused young man!” he says again, laughing. “So why did I become a doctor?” he asks. “It's a good question, and I really don't know the answer. But okay, we had this doctor in our family, Sidney Feldman, and he was our family doctor. He was a wonderful man, and he was a role model in our family of a gentle, caring person. He loved music—classical music…

“Yes.” Jerry pauses. “Yes,” he says again, to himself, and then: “I remember that he once told me that on his way to the hospital every day he used to drive down a certain street in Brooklyn because there was a beautiful maple tree on that street that was spectacular, and that it gave him great pleasure to drive down that street and look at it. So this man was not just a doctor, but he had a sense of beauty, and I was very taken by that. He was a special person in our family.

“Our family started out on the Lower East Side.
*
My father was very smart, and went to Cooper Union for a year, but he dropped out, and the story we heard was that he dropped out because he had to support the family. But in retrospect, I wonder. Because I know my father was severely depressed, and was hospitalized at Hillside Hospital—but not in Queens where it was when your brother Robert was first hospitalized.

“The original Hillside is in Hastings, at the top of a place called Hillside Park, and my father was hospitalized there for a year, a ten-minute walk from where Gail and I wound up living, in fact, when I was at Montefiore. It was a family secret we don't know much about. Then, after he came out of the hospital, he became a window cleaner, and he worked as a window cleaner for the rest of his life. So he was limited not by his intellect, you see, but by his depression. And he used to say, ‘Every window is a pane to me,' and he was a very gentle, loving man. But my mother was afraid of him, and she used to say, ‘Don't say anything that will upset your father,' because I think she lived in fear of upsetting him in a way that might bring back the depression.

“My mother worked as a bookkeeper until she married my father. They were both socialists, and I went to a school run by a labor Zionist
organization where I learned Yiddish. We were involved with the Henry Street Settlement House on the Lower East Side—I took piano lessons there—and we went to summer camps, Kindervelt and Kindering, and I worked in both places as a waiter. All the waiters and busboys were children of parents who belonged to this socialist organization, and there were Puerto Rican kids and Polish kids and black kids in the summer camps. We were all in it together, and I loved it, I really loved it, and I guess I was introduced early on to socialist ideals—to tolerance, and to racial tolerance especially.

“My father had a friend named Smitty, a black man who was the janitor for an Ebinger's bakery on my father's route, and when my father was on vacation, Smitty would wash the windows for him, and my father would reciprocate and do favors for Smitty. Smitty was the only person I ever remember, outside of family, who came to our home for dinner, and he came with his wife. This was in the 1940s. He was a lovely man, and he was my father's best friend, and he lived in a black neighborhood in St. Albans.”

Jerry and I reminisce about our childhoods (“Sometimes,” he says at one point, “I think a lot of what I do and the way I react in certain situations comes down to the fact that I'm still just trying to please my unpleasable mother and get my depressed father's attention”; I smile, tell him about Robert reminding me, recently, of the time our mother said, “Am I the only
man
around here?”)—about teachers and friends from Erasmus, about the Dodgers, about the street games we played as kids: punchball, stickball, boxball, box baseball, kickball, Chinese handball, Ringalevio, Johnny-on-the-pony, hit-the-penny, heels.

He talks, with enthusiasm, about some of the new programs he has recently initiated at Yale, through which he is trying to find effective ways to teach clinicians not just to provide care, but to prevent disease and the spread of disease. We don't know how to do this in the clinical setting, he explains, and he has set up several pilot programs that work with primary-care physicians, teaching them how to integrate HIV prevention into clinical practice. It is hard to believe, he says, that this has not been done in an organized way before.

I attend one of these training sessions with Jerry—fifteen doctors
sitting around and talking about how, step by step, to talk with patients so as to encourage adherence. Afterward, driving back to Jerry's home, we talk more about his new programs, and about health-care policy in general—about his belief in the absolute need to invest more resources in prevention and public health measures than in biotechnology, in basic medicine rather than in heroic medicine, and in care rather than cure—and though I agree with him, I say something about being grateful, too, for the existence of biotechnology and heroic medicine, which, after all, saved my life. Though I know, I add at once, that most people do not get the kind of care I did.

“Right,” Jerry says. “You got the best, and the system didn't screw up for you. And you had access to very good care, and not everybody does. You can't expect everyone to have equal care all the time, of course, but people should have access.”

I don't say anything for a while.

“Sure,” he says. He takes his eyes off the road for a second, smiles, then reaches across and puts his hand on my shoulder. “Sure, Neugie. Everyone's entitled to the kind of care you received.”

12

A Safe Place

A
LTHOUGH
ARTHUR
COMPLAINS
CONSTANTLY
about living in New York City (“Mountains and streams mean more to me than bridges and buildings,” he says), he is the only one of my four friends who is still there. Arthur often seems to me, in fact—as in his grumbling
about
New York—a quintessential New Yorker: eccentric, outspoken, and, with strangers as with friends, exceptionally direct, gregarious, and generous. He kibbitzes with virtually everyone he meets—the doormen and elevator operators in his building, waiters and delivery people; and when we go for walks—with his trim salt-and-pepper beard, a black beret aslant on his head, bright red sweatpants, and earphones clamped tight to the sides of his head—he looks like a wandering poet recently escaped from a Woody Allen movie. He says exactly what he thinks most of the time, mixing outrageously blunt comments, Brooklyn slang, and Yiddish expressions with sophisticated and learned speculations—and despite his leave-me-alone demeanor, he does not hesitate to act decisively in crises, large and small.

BOOK: Open Heart
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