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Anniversary

1991 THE TENTH ANNIVERSARY OF THE first reported cases of AIDS was approaching. Of course, my hopes for a cure were naive. All of my early patients had been dead for some time. There were few reminders of those days, really. My career took unexpected turns, taking me first away from AIDS patients and then back with a vengeance. Due to a visa problem, Amal returned to Egypt. When she left, she wished me a thousand blessings. Each blessing turned into another patient with AIDS.

AIDS was still making news. The big issue in the press was whether all physicians and dentists should be tested for the virus. This issue was being pushed by an unfortunate young Florida woman who claimed she had contracted AIDS from her dentist. The controversy brought things a little too close to home for many of my colleagues. Most doctors in practice had had enough. They didn’t even want to talk about AIDS anymore, much less care for the growing number of patients.

The housestaff quietly fulfilled their responsibilities toward AIDS patients but with no enthusiasm and with occasional hostility. The spectre of contagion haunted my profession. Most physicians wanted all patients tested. Medical students, in particular, seemed



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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Anniversary 1991 THE TENTH ANNIVERSARY OF THE first reported cases of AIDS was approaching. Of course, my hopes for a cure were naive. All of my early patients had been dead for some time. There were few reminders of those days, really. My career took unexpected turns, taking me first away from AIDS patients and then back with a vengeance. Due to a visa problem, Amal returned to Egypt. When she left, she wished me a thousand blessings. Each blessing turned into another patient with AIDS. AIDS was still making news. The big issue in the press was whether all physicians and dentists should be tested for the virus. This issue was being pushed by an unfortunate young Florida woman who claimed she had contracted AIDS from her dentist. The controversy brought things a little too close to home for many of my colleagues. Most doctors in practice had had enough. They didn’t even want to talk about AIDS anymore, much less care for the growing number of patients. The housestaff quietly fulfilled their responsibilities toward AIDS patients but with no enthusiasm and with occasional hostility. The spectre of contagion haunted my profession. Most physicians wanted all patients tested. Medical students, in particular, seemed

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti torn by the attitudes reflected in the media and what they were taught by their professors. Each year fewer undergraduates were choosing medicine as a career. The most commonly quoted reason: fear of AIDS. I found an unexpected few moments to speak with Margaret at a meeting in Seattle. We both smiled ironically knowing that we had to travel across the continent in order to have the opportunity to talk to each other. We never saw each other at the medical center those days. Margaret had become an AIDS specialist. No, more than a specialist, an authority. She had conducted the clinical trials that led to the introduction of zidovudine (AZT), the first medicine found to be partially effective against the AIDS virus, in 1987. She addressed the audience of fellow faculty in Seattle with total command of her subject matter. “Zidovudine prolongs life. DDI and combined chemotherapy are coming, which will further improve survival,” she encouraged. Margaret, however, had paid a price for her fame. The Miami Herald had run an exposé on her in the Sunday edition a few months before, alleging she was “on the take” from the drug company that makes AZT, and even attempting to raise scandalous issues about her personal life. I assumed this misplaced medical muckraking was instigated by patients who were frustrated in their attempts to be enrolled in her protocols. I wrote a letter to the editor defending Margaret, which was published, but few others rose to her defense. After I left the Special Immunology Clinic three years previously, she made national news with her investigations on heterosexual transmission among prostitutes in Miami and her clinical trials of AZT. She had six faculty members and a host of support people working under her. The hospital had opened a wing for her patients. Yet AIDS activists pelted her with eggs at an international AIDS conference, accusing her of delaying the arrival of new medicines with her research. She had no personal time. Her telephone was always busy. In a quiet moment before her talk, she told me that the World Health Organization predicted that by the year 2000 there would be

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti 5 million babies dead from AIDS, 10 million children orphaned, and 15 million dead adults. “What we have is a pandemic. It will be followed by a second pandemic of drug-resistant tuberculosis. We’ve not seen anything like this since the Black Death of the fourteenth century.” “So if there will be 20 million dead and 50 people infected with the virus for every one with symptoms of the disease, that makes something like 10 billion infected people by the turn of the century,” I quickly calculated in my head. These numbers were greater than I could comprehend. “How many AIDS patients do you think one doctor can care for?” I asked her. “It’s exhausting work.” “Five or 600 at best,” she replied thoughtfully. “So we need a city of doctors worldwide full-time to care for all these patients. There is no way the medical profession can make that kind of response.” The image of poor people in Africa, Asia, and, of course, Haiti dying with no medical care overwhelmed me. To me it was clear. AIDS had become a disease of the poor. I wondered if Margaret appreciated the paradox of what we talked about and what she was saying in her lecture. In her lecture she talked about more things we could do for people with AIDS. Newer drugs, better drugs, more expensive drugs, more tests, more physician time, but still no hope for cure. We were going to end up with two kinds of AIDS—for the minority with money, a chronic illness measured over years, with treatments and blood counts, and alternative treatments, protocols, and hope. For the poor majority, insidious weakness, a few hopeless months of wasting, or several hours of suffocation. Even if we gave the medicines out for free, there aren’t enough doctors, nurses, hospitals, clinics, and laboratories or, for that matter, enough understanding among people “at risk” to deal with these numbers. George Orwell was right: We all have to die, but it’s better to die rich. The poor always suffer more in the process. My suspicion that AIDS was somehow differentially preying on

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti the poor had been growing during the late 1980s and early 1990s. Actually, that suspicion had been there initially with our Haitian patients. We had looked at income as a risk factor. Our Haitian patients with AIDS were no poorer than those without AIDS. In retrospect, we realized that we had committed a major statistical blunder. The control group should have been a group of rich patients, not other poor people. So for several years, I went against my instincts and tried to find some other link between my Haitian patients and AIDS. Then, in 1988, Alina—compassionate, caring Alina—engaged me in helping her with one of her growing passions—bringing health care to the homeless. I think it might have been a kind of “payback” for my getting her involved with Régis. At any rate, the social upheavals of the 1980s—the flood of immigrants from Cuba during the Mariel boatlift, many of whom had problems with mental illness, coupled with recession and the impact of crack cocaine on poor communities, had swollen the ranks of Miami’s homeless to more than 8,000. They lived in encampments in the city’s parks and under the freeways that crisscrossed the city. As I got more involved, I learned that AIDS had become a huge problem among the homeless. So Margaret and I were on two different planets, universes apart. Margaret lived in the universe of science—numbers, protocols, statistics, and clinical trials. We need these things in order to make progress. That’s not to say that Margaret still did not suffer with her patients. I know she did. But science gave her and them hope. But in the homeless clinic I was working in, there was very little science. Mostly, there were a lot of patients with AIDS, and, although I tried, there was precious little I could do. In my own mind, Tim was the last person in the danse macabre line, the string of seemingly unrelated people—rich, poor, black, white, gay, straight—being led to death by the AIDS devil. During the Black Death, the danse macabre image represented the belief that the plague chose its victims without respect for education, social position, or wealth. For a while, the modern plague in Miami gave

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti most people the same perception. But to me it was clear: The epidemic was changing. In the future the virus would be targeting the people I’d come to know at the clinic—the street people, the drug users, the prostitutes, the poor would become its preferred victims. Tim was, for me, the last great egalitarian death, the last person in the danse macabre line. That’s probably because he died so out in the open. A physician dying of AIDS carries a special poignancy. I knew of other physicians who had died of AIDS, but they died secretly. With the first symptoms, they would quietly resign and move back with their families. Other physicians worked for years knowing they carried the disease but told no one. The truth came out only in their obituaries. Tim was different. He went public.