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Morts et Mystères*

BY EARLY 1981 OUR REVIEW of the Haitian patients admitted during the previous year showed that the men and women who developed unusual infections were young, had lived in the United States for several months to a few years, were not malnourished before they became ill, and worked in a variety of occupations. They all had blood tests that showed they had previously been exposed to several viruses, including hepatitis, and frequently, but not always, the germ that caused syphilis. Among those with disseminated tuberculosis, a majority had yeast infections in their mouths and swollen lymph nodes in several parts of their bodies. The list of infections we discovered was impressive: viral infections of the esophagus, disseminated herpes virus, disseminated fungal infections, central nervous system fungal and viral infections, central nervous system parasitic infections (toxoplasmosis), and Pneumocystis carinii. Frequently, two or more of these infections were found in the same patient.

It was Margaret who first made the connection between what we were seeing in our Haitian patients and the recently reported occurrence of opportunistic infections in previously healthy homosexual

*  

Literally, “The dead and the mysterious.” In Voodoo, the phrase refers to the spirit world.



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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Morts et Mystères* BY EARLY 1981 OUR REVIEW of the Haitian patients admitted during the previous year showed that the men and women who developed unusual infections were young, had lived in the United States for several months to a few years, were not malnourished before they became ill, and worked in a variety of occupations. They all had blood tests that showed they had previously been exposed to several viruses, including hepatitis, and frequently, but not always, the germ that caused syphilis. Among those with disseminated tuberculosis, a majority had yeast infections in their mouths and swollen lymph nodes in several parts of their bodies. The list of infections we discovered was impressive: viral infections of the esophagus, disseminated herpes virus, disseminated fungal infections, central nervous system fungal and viral infections, central nervous system parasitic infections (toxoplasmosis), and Pneumocystis carinii. Frequently, two or more of these infections were found in the same patient. It was Margaret who first made the connection between what we were seeing in our Haitian patients and the recently reported occurrence of opportunistic infections in previously healthy homosexual *   Literally, “The dead and the mysterious.” In Voodoo, the phrase refers to the spirit world.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti men. Once pointed out, the similarities were indeed striking, but the two groups were not completely alike. First, we had heterosexuals, including women. Second, our patients had much more tuberculosis and toxoplasmosis and much less pneumocystis pneumonia. We had only one case of Kaposi’s sarcoma, a previously rare cancer emerging in the gay population. Still, we knew we were on to something and began meeting weekly. Margaret remarked that the problem was being reported more and more in gay men. “It even has a diagnostic category for billing. They’re calling it the Gay-Related Immunodeficiency Disease.” We decided to follow all new Haitian admissions. Margaret and Art P. drew up a questionnaire, and each of us took turns for a week identifying and reviewing all the Haitians admitted to Jackson Memorial. Any patients who seemed to have the syndrome would be followed by whoever picked them up during his or her week on call. I volunteered my office as a logical place to see patients after they were discharged. As it was located behind the medical clinics, I could arrange for patients to be seen there, regardless of their ability to pay the university’s usual private patient fees. While most of our time as medical school faculty was devoted to supervising residents caring for “public” (that is, poor) patients, each faculty member was required to devote a small portion of time to seeing private patients. Dan, Mark, Margaret, and I already saw our private patients there, and Fanny and Clara, our secretaries, could facilitate appointments and other logistics. It was clear that these patients could not be well accommodated by the hospital’s clinic system, with its long waiting list for appointments and inflexible scheduling. My week on call finally arrived. The word from those who had already taken call was that I could expect about 10 Haitians to be admitted during the week but that only two or three might actually have the syndrome. The most difficult part would be coordinating my schedule with that of the Creole interpreter. Speaking to patients through an interpreter, in their own language, I began to realize how shallowly I knew these people. During rounds I would introduce

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti myself and try to review important historical points in my best college French. The patients would stare at me blankly or answer in English “Yes, yes” and I knew not a single word I had spoken had been comprehended. Now I was able to examine their lives in exact and intimate detail. Through their language I discovered their intelligence, emotions, sophistication, and sense of humor. My interest in the research took a back seat to my growing fascination with the patients themselves. I loved them from the beginning. I loved them because they were underdogs. I loved them for their improbable names: Theophile (“love of God,” in Greek), Clairvoyante (“fortune-teller”), Marc Aurele (the Roman emperor/stoic philosopher), and Mercidieu (“thanks be to God”). I could trace part of their culture to France, for many of their names—Voltaire and Rousseau, for example—had a hint of the Enlightenment. The language shared with its parent French a rhythm and softness and seemed to have an intrinsic rule that it be spoken while smiling, no matter how much the speaker was suffering. At the same time, I sensed in their speech an Africa of long ago. It sounded like French but was incomprehensible as such and was peppered with repetitive sounds, almost as if it were intended to be danced to, with drumbeats as accents. Their families, particularly, their children, were dressed in a way that surpassed style and approached artistry, even though they were poor. These features of custom and language gave the Haitians an exoticness that enhanced my attraction to them. Poor, peaceful, humble, and hungering after justice, they seemed to be the beatitudes personified. The housestaff were not quite as sanguine in their opinions. They gave whatever was necessary in terms of hours, dedication, and compassion to these patients with overwhelming illnesses. But already Haitian admissions were getting a reputation as “bad hits,” and a sort of gallows humor was beginning to emerge. During rounds one day, in response to an uncommonly prejudicial remark by a medical student, I remarked that I had rarely seen a Haitian admitted with any of the diseases we usually associate with alcohol or drug abuse.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti One of my interns retorted, “That’s because they don’t live long enough.” I interviewed a 42-year-old woman named Marie. It was hard to believe she might have the syndrome, despite her disseminated tuberculosis and telltale oral yeast infection. She looked younger than her age and was slightly overweight. Two years before, she had left her six children in Haiti and come to this country to do domestic work, sending her meager earnings back to her family. She smiled incredulously when I asked through the interpreter if she had ever had a bisexual lover or sex with a woman. Questions about oral sex and anal sex were met with the same look of surprise. Yet she was not offended by the questions and answered in a matter-of-fact manner. She had several boyfriends in Haiti before the birth of her first child, but was then monogamous until her husband died and she came to this country. There had been no unusual sexual practices, just ordinary relations between wife and husband. The only other patient I picked up that first week was named Claude. He was in his mid-20s and had come here as a student. Again, I saw the same incredulous smile and disclaimers in response to my questions about homosexuality and sexual practices. He looked much sicker than Marie; he was wasted and suffering from high fevers. Still, he was polite and agreeable and seemed glad that someone was taking an interest in his illness. Blood was drawn, and my forms were completed and then passed on to Margaret, who coordinated things, along with my assessment of “one probable, one definite.” Claude continued to decline in the hospital and died of toxoplasmosis a few days later. Marie was discharged in reasonably good condition; however, she did not return for her follow-up appointment. Two months later she arrived in the emergency room with overwhelming pneumonia and died within 24 hours. Margaret informed me that my “probable” had become a “definite.” Haitian patients with the syndrome continued to be admitted to my ward team. Previlus presented with fever, diarrhea, and dissemi-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti nated tuberculosis. He was a slight man, smaller than average but muscular. His hairline had receded, and he kept his hair trimmed close to his scalp. He had somehow found his way to us from Palm Beach County, where he lived and worked as a migrant laborer. He spoke articulate English and French, in addition to Creole. He was the first to complain to me of itchy bumps on his skin, and we asked dermatology to see him. The consultant’s diagnosis was flea bites, but when informed of this opinion, Previlus protested adamantly. “I don’t have fleas, Docteur.” “I understand, Previlus, but that’s what the skin specialists think.” “I am not a dog, Docteur.” “Perhaps they’re some other kind of insect bite. You do work in the fields. Perhaps red ants.” “I have never had these before, Docteur. There are no insects on me. I have no fleas.” I let the issue die, not knowing he was right. The cause of his diarrhea was discovered through the persistence of a fourth-year student rotating through the team, who would not accept my explanation of this problem by conventional causes. He discovered an unusual parasite in Previlus’s intestines that was not supposed to cause disease in humans. Previlus was the first patient with AIDS in whom this infection was discovered. Unfortunately, none of our treatments brought him anything more than temporary relief. Although we could not relieve his itching or cure his diarrhea, Previlus did improve enough with treatment of his tuberculosis to allow him to leave the hospital. In fact, diagnosing tuberculosis in its myriad new forms and effectively treating it (it took three medicines for at least nine months) was one of our first real successes. The old vernacular name for tuberculosis was “consumption,” which graphically described how Previlus and the others with tuberculosis looked when they first presented—gaunt and wasted, as if being slowly consumed by a fire burning inside them. Fortunately, after a few days of treatment, Previlus’s fever came down and his appetite improved dra-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti matically. After his discharge, I volunteered to follow him in my office, where he joined Theophile, Marc, and Belony, the original group of survivors. Theophile was picked up by Gordon when he was admitted with a type of fungal meningitis. When he came to the office he always looked remarkably well, wearing a brightly colored shirt and a broad-brimmed straw hat. He was tall and thin but not wasted and had an infectious grin. He complained of headaches after his meningitis, and Gordon treated him with codeine. Whenever he ran out of medicine he would show up unexpectedly at our office. Since I was there more often than Gordon, I would frequently renew his prescriptions. Marc was one of the first in whom we diagnosed toxoplasmosis of the brain before he died. Initially he responded dramatically to treatment, but the nursing home he was discharged to inadvertently discontinued it. When he returned to us he was paralyzed on his right side and could not speak. Although restarting antibiotics forestalled his death, the drugs did not restore his strength or his speech. He returned to our office in a wheelchair each week to see Margaret. He smiled on one side of his face and drooled on the other in response to greetings from Fanny and Clara. They mercifully ignored his disability and carried on one-way conversations with him: “Oh, Marc, you’re here. The doctor will be right with you. You look like you’re doing better.” Belony, like so many of these patients, was a student in his early 20s who lived with his mother. His English was not as good as Previlus’s. He was more debilitated than the others and more frightened. Rumor had it that he believed he was hexed. His mother, who brought him to each visit, clearly thought so. She adorned his neck with a makeshift amulet, a little sack containing herbs, miniature pictures of saints, and strange hieroglyphic drawings. His hair was falling out in patches, and he covered his head with a stocking cap. As Belony had little spontaneous speech, his mother would answer my questions. He avoided eye contact, preferring the floor. I felt

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti uncomfortable about not having the same rapport with him that I had with the others, but medically, at least, he was not getting worse. In fact, he remained as I have described him for several months. Despite our patients’ marginal health, I was optimistic. It was exciting. The veil of ignorance had been partially lifted. Patients who would have previously died were surviving and leaving the hospital. Many did reasonably well between relapses, despite their blood tests, which showed that they were still immune deficient. We had effective treatments for many but not all of the infections and hoped that if we could buy enough time either we would find a cure or the patients would recover spontaneously. We also knew something that hardly anyone else knew: This terrible disease did not affect homosexual men exclusively. The speculations in the letters section of the New England Journal of Medicine—amyl nitrates, proctofoam cream, the immunosuppressive properties of sperm in the bloodstream—were fanciful but wrong. But what was the connection between these Haitians and gay men with the same illness? Was this something new, or had it been there all along but in our ignorance we had missed? We speculated among ourselves. New virus? Mutant virus? Combination of viruses in sequence? Genetic predisposition? Old virus behaving in a new manner? Perhaps it was exposure to malaria or some other parasitic organism endemic to Haiti? There certainly were enough possibilities to choose from—leishmaniasis, schistosomiasis, strongyloidiasis. Rifampin, a drug used to treat tuberculosis, was reported to have immune-suppressant properties. Each of these theories was considered, but there were no hard facts to support any of them. Mary Jo in obstetrics delivered the baby of a pregnant mother dying of tuberculosis. Gwen and Wade in pediatrics followed this child and soon others, some born of seemingly healthy mothers. All eventually succumbed to bizarre infections. So now we had infected men, women, and children in growing numbers. Their only link? They were all Haitians.