Open Heart (28 page)

When I return and talk with Jerry about what I've been thinking and feeling, he responds by telling me about his travels, and about how they proved crucial in his career.

“Going to Nigeria, and living there for two years,” Jerry says, “was
the defining event of my life. I was one year past medical school, early on in my internship, and I was sort of groping around, actually thinking for a while of going into psychiatry.

“This was 1964, and I knew I didn't want to go to Vietnam. So I enlisted in the Public Health Service as a Peace Corps doctor. It was an option that closed down a few years later, but at that time it enabled you to do your national service without being in the military. And I was very lucky, you see, because what happened was that I experienced a series of revelations about what another culture and society are, and that led to a new understanding of disease.”

Jerry and I are sitting in my living room on the West Side of Manhattan, an hour or so after he has given a lecture at Roosevelt-St. Luke's Hospital on the importance of adherence in the treatment of AIDS. The concept of “pharmacological forgiveness” (normally, if a patient takes 80 percent of a prescribed medication, there are few problems) does not apply to AIDS, Jerry explains. When it comes to AIDS, if you have 80 percent adherence you only get, at best, 50 percent suppression of viral replication. (This happens because in the presence of partially suppressive therapy, viral replication will select for viral variants with resistant mutations.) To have a good outcome, one needs at least 95 percent adherence—perfect or near-perfect adherence for the duration of the patient's life, and in this AIDS is unique, Jerry says, since no other infectious disease requires lifelong therapy.

He talks about the importance to adherence—and, thus, to survival—of the doctor-patient alliance. He cites studies, including several of his own, that document the most significant variable in the initiation of therapy, and the single, most important element in the doctor-patient alliance: trust in the doctor. He reviews ways of overcoming patient resistance and mistrust, and goes over protocols and design interventions that encourage adherence. The key is simplification—reducing pills and doses as much as possible. “It is naive and unrealistic,” he says, “to expect that most patients can adhere to complex antiretroviral regimens, perhaps for life, without thoughtful, practical, and continuing support.”

Most clinicians, alas, receive little training in assessment and support
of adherence, but studies make clear that they, and their patients, benefit when they do, and when responsibility is shared. “The wonderful biomedical advances that have become available for the treatment of AIDS must be accompanied by parallel behavioral practices,” Jerry tells his audience. “This is why the patient-provider relationship is very precious, and why we should be proud of it, and honor it, and not neglect it.”

“Most of the time when we live in another place, we're tourists,” Jerry says. “We're there for a little while, and then we move on, and we don't get to really understand much of the culture. By the end of my first year in Nigeria, though, I began to appreciate enough about both the culture and the society for things that had not made sense to me to begin to make sense.”

My sublet is on the first floor, street-side, of a building on West 54th Street. Jerry sits in an easy chair in front of the window, and while he talks I watch men and women, policemen and policewomen, moving about in front of the station house across the street—the 18th precinct—coming and going to and from the precinct and the nineteenth-century courthouse—in former times, Men's Night Court—next to it.

“What am I doing here? I asked myself,” Jerry says, “and the answer was, I'm here as an agent for change. But then I thought: Who am I to be here to change this culture? There's a certain arrogance in thinking that way—part of an old colonial mindset.

“Well, I said to myself, I brought Western medicine, and we could argue that perhaps medicine, of all things, is an intervention that, though it changes the culture, still provides a definable good.” Jerry stops. “But okay—let me give you an example of what happened there—of how and why things changed for me.

“I wondered why it was that the Nigerian children had a higher infant mortality rate than we do, and part of the reason, I saw, was that they were exposed to multiple diseases at the same time during their first year of life, whereas our kids are protected by being separated from one another. We raise them in our own little nuclear environments, and only at a later point do they go on to nursery
school and kindergarten. Then they start getting diseases, but one at a time—and they're already much stronger and able to handle them.

“But in Nigeria, the children would be together from six months of age on—as soon as weaning ended, the older siblings would take care of the younger kids and you would see these bands of kids who'd range in age from one year to about six or seven, and they'd all be together. And Nigerian kids have little in the way of toys or dolls or playthings. They have a stick or a hoop and they play with each other, not with objects.

“So a lot of kids would be sick with a lot of different things at the same time. In order to change the impact of multiple infectious diseases that result in higher mortality, then—and forget about vaccinations for a second—you have to change the tribal practices and separate the kids, but if you separate the kids, you change the way they learn to relate to one another, which is part of the genius of the culture.

“And I said ‘Oh my God, look at that—we don't know how to organize our lives like this. It's different, and it has an effect on childhood diseases, and if you want to improve childhood mortality, in a sense you have to change childhood development, and do I really want to do this?'

“I mean, sure—kids shouldn't die. But on the other hand, there are certain things about this culture that are vibrant and beautiful and have to do with interpersonal and interfamilial kinds of things that we don't have, and that I think we suffer from not having. Now, on any scale of things it's better to prevent childhood mortality—of course—but on the other hand you have to appreciate that some of the technique for doing this is going to change the society at a fundamental child-rearing level. So this is what began to dawn on me near the end of my first year there.

“I'll give you another example,” Jerry says, and he proceeds to tell me the story of the first medical article he wrote, about a disease called schistosomiasis.

“Many of the Peace Corps volunteers were high school biology teachers, and we organized a program and taught them to recognize schisto in the urine.
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The host for schistosomiasis—it's also called
bilharziasis—is a snail called bulinus that comes from East Africa and is endemic to the Nile.

“But they didn't consider it a disease. The Yoruba word for it is
itosi aja
, which means ‘dog's gonorrhea,' and they saw it as a kind of coming-of-age—the equivalent of menarche in girls. And this raises a very interesting question: If a pathologic entity occurs in a hundred percent of people, is it a disease?

“Now the natural history of schisto is that it goes away in time because your body creates an immune response to it. You'd see the rates rising in schoolboys up to the age of about twelve to fourteen, and then they'd go down. And the rates in girls were close to zero, and I said, How could this be? What's going on?

“So I sat on the banks of the rivers there and watched how the rivers were used, and this is what I learned. In the morning, before the sun would be fully out, the river was used by the mothers and their infants. The mothers would wash the clothes, and the babies would splash around in the water.

“At noon, when the sun was at its highest, the kids on their lunch break from school would play in the river. It would be the boys mostly, and not the girls, because they were a little modest and didn't have bathing suits and wouldn't go naked into the river. But the boys went in their underpants. And in the evening, the older men would come back from the fields and use the river, and wash themselves and then go home.

“Now the biology of schistosomiasis is that it has a complicated life cycle whereby the snails are the intermediate host. You pee or drop a load and it gets into the snail and then it grows in the snail and emerges into infection of the person—it's spread by contact with skin in infected water, and God, or nature, seems to have provided for the snail to come out according to the availability of sunlight, so the middle of the day was when the cycle for transmission was best set up: the sun was out, the snails were out, the boys were out peeing and swimming in the water, and bingo!

“So that explained why the rates were higher in boys of that age and it was kind of a revelation—like
‘Boing!
Now look at that—it has to do with how the stream is used, and is a combination of biology
and
behavior,' and this made me appreciate that disease is not
just about biology, but a combination of many forces that combine to result in disease etiology.”

Jerry talks about having become enamoured of the richness of the spiritual world that was part of life in Nigeria, and about the complexity of their religious beliefs and practices.

“Yoruba have about four hundred deities,” he says, “and they exist for every kind of life experience, and are involved in different forms of worship—different costumes, different music, different sculptures, different in everything that relates to each particular deity.

“So there was this enormous array and richness of religious practice that, although it contained within it a vague concept of a supreme deity called Oduduwa, was essentially animistic. And this meant that everything you touched was alive, and had a spiritual life, and was connected.

“So they had that, but they didn't have penicillin. And we have penicillin but we've lost
that
to some degree, and what I thought was that in an ideal world you'd want both. There are always tradeoffs. In order to have penicillin, I reasoned, we in some ways gave up some of our spiritual heritage. Now I'm a penicillin doctor and I'm surely not abandoning that. But what happened during my time there was that being in another culture took from me the belief in perfectability and progress I'd been schooled in as a twentieth-century American because it made it clear that progress always comes with a price.

“Then, my two years up, I returned to the States, and looking back, what politicized me when I got back here, I think, was living in the midst of the material wealth of our society after having lived in an environment poor in material resources but rich in other ways, and observing—feeling!—the maldistribution of wealth in our own country more so than at any other time of my life.

“Now my parents were socialists, and I used to go to these socialist summer camps, but nothing prepared me for the way things struck me on my return, and how, within our own society—and forget the disparities between rich and poor
nations—
but how there was such an enormous maldistribution right here at home, in access to health care especially, and what I decided was that if I were to be poor, it would be better to be a poor Nigerian than a poor American. Because in their culture if you were poor, although you'd
rather be rich, you weren't
devalued
for being poor. Whereas in our society, if you're poor you're a nonperson.

“I had been a very honored man in Nigeria, and when I came back I lived on the Lower East Side, in an apartment as big as this rug”—he points to a ten-by-twelve-foot Persian rug on the floor—“for thirty-five dollars a month, and I went back to the grind of being a resident—to being on every other night—where I was low man on the totem pole.

“But I was determined to finish my training, and my intention was to prepare myself to go back to the developing world. I wanted to train in infectious diseases and public health, but at the time there was no opportunity to do this in New York, where there was only one school of public health, at Columbia, but it was separate from the medical school, and I had begun to have this vision of merging the two.

“I made inquiries, and I found out that there was a new program in Boston where you could train in infectious diseases while also getting a master's in public pealth at Harvard. So I went to Boston.”

Jerry sighs. “I never really made it back to the developing world—though I still have hopes of doing so—because this was a period when we were at the beginning of community medicine, and after I arrived in Boston, I started getting involved with neighborhood health centers and clinics. I worked in Roxbury, with poor blacks and their families, and also with the Black Panthers. Did you know that?”

I say that he told me this before, but that he hadn't given me a lot of details. He closes his eyes as if to see again the world he knew three decades ago, and when he does, I see the young man I knew nearly fifty years ago.

How can it be, I wonder, that this guy I used to go to parties and basketball games with (Jerry was official timekeeper for our high school games), whom I hung out with on Flatbush Avenue, rode the trolley car and subway with, went to classes with, and played ball with all through high school and college—with whom I've spent hundreds of hours talking about sports and politics, about girlfriends and wives, about our friends, our children, our work, our hopes and dreams and hard times—has become this remarkable
doctor: a man who fairly breathes optimism into the air around him, and a man who, during the epidemic outbreak of AIDS in the mid-eighties, was attending the funerals of dozens of patients every month in a time when not one of the hundreds of patients he treated recovered.

In 1982, early in the AIDS epidemic, Jerry alerted the Centers for Disease Control to the fact that AIDS could be transmitted hetero-sexually—that the sexual partners of heterosexuals with AIDS were in danger of contracting it.
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