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PART I
The Curse Descends



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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti PART I The Curse Descends

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Boat People 1979–1981 “THE NEW ELLIS ISLAND.” Miami—Mecca for immigrants and refugees from around the Western Hemisphere. A few blocks north of downtown Miami on Biscayne Boulevard, facing Biscayne Bay and the port, is Miami’s equivalent of the Statue of Liberty—the Freedom Tower, Miami’s first skyscraper. It is one of the few architectural gems in downtown Miami, registered as a historic landmark, in honor of the hundreds of thousands of Cuban refugees who entered the United States and were processed through this building after the Cuban revolution that started in 1959. From the 1960s through the 1980s, many Cuban refugees became highly successful and influential in Miami. Of course, fleeing communism, the Cubans were welcomed with fanfare. In 1980, 200,000 Cubans arrived in Miami, most during a two-week period that was called the Mariel boatlift. To politically neutralize an attempt to leave Cuba by a handful of dissidents, Fidel Castro sent to Miami all his incorrigible criminals, mentally ill, and incurably sick. Miami absorbed them all. At the same time, an equal number of Haitians were fleeing a brutal dictatorship and misery beyond belief. Unfortunately, the U.S. government branded the Haitians economic, not political, refugees. In addition, there was the small problem of the color of their skin. The Haitians, therefore, arrived in secret—beaching their

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti sailboats, swimming to shore, or escaping into the night from the bowels of freighters docked on the Miami River. If lucky, they connected with family or friends and disappeared into the underground of Little Haiti. If caught, they were transported to the Krome Avenue Detention Center—barracks surrounded by chain-link fencing, barbed wire, and everglades sawgrass, invisible to Miami and the world. For the Haitians, Miami could be a blessing or a curse. Miami in 1980 was an uncommon city—not to be confused with Miami Beach, the decadent, overbuilt sandbar across the bay. It was founded a little more than a hundred years ago, as much a frontier town as Tombstone or Dodge City. Until the Cubans arrived, it was also very much a southern town. Miami was not integrated until 1967. The downtown area was disappointing then, except to the tourists from Latin America searching for bargain electronics and jewelry. Although magically illuminated, Miami’s streets were mostly empty after dark. The life of the city pulsed in the low-rise neighborhoods that surround its center—white and affluent to the south and east, African-American to the northwest, Latin to the west, and Haitian due north. With a population of roughly equal parts white, black, and Hispanic and significant minorities from the Bahamas, the West Indies, and many countries of Central and South America, Miami is a Creole city—a collection of spices from around the Caribbean and a taste unique unto itself. To most Americans, Miami is a peripheral item as far removed in culture, climate, and geography as it can be and still be attached to the mainland. For its immigrants and refugees, however, Miami is the American dream—the embodiment of opportunity and freedom and the shortest and surest way to flee whatever they are escaping in their own country. When poor people in Miami get really sick, they have no alternative but to go to Jackson Memorial Hospital, which is supported by Miami Dade County and obligated to treat county residents regardless of their ability to pay. With more than 1,500 beds scattered among several buildings, and with the University of Miami School

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti of Medicine on site, the medical center complex looks like a small city unto itself. I was a resident at Jackson Memorial from 1973 to 1976. After two years with the National Health Service Corps in rural Virginia, I was recruited to return to Miami as a full-time faculty member of the University of Miami School of Medicine. My division chief, Lanny, thought it would be “novel” to have someone on the faculty who had actually practiced medicine. My responsibilities included teaching on the wards and running the medical clinics. During my brief absence the hospital changed dramatically. Several of the small tile-roofed, low-rise buildings had been torn down and replaced by modern patient care towers. The field of ficus trees filled with starlings that chirped perpetually as I walked from my on-call quarters to the hospital was being replaced by a new ambulatory care center. The hospital relied on the University of Miami School of Medicine to provide its workforce. It was a good marriage. The hospital provided an almost-inexhaustible supply of challenging cases, and the medical school provided a small army of faculty members to supervise the residents who cared for the county’s poor. All told, over 500 faculty members and 900 residents worked on the campus. During my internship and residency at the “Big Jake” in the mid-1970s, Haitian patients were a rarity. Occasionally, a Haitian merchant seaman would be let off a ship and admitted with malaria or a migrant worker would develop dysentery. When I returned to the medical school faculty two years later, I discovered that over 150,000 Haitians had arrived during my absence. Haitian patients were a daily fact of life on our wards and in our clinics. Because of their undocumented status and their poverty, most Haitians tended to wait until they were desperately ill before coming to the hospital. It was difficult to get to know them because of their unusual language, a unique mixture of old French vocabulary with African grammar and syntax. As a group, however, the Haitian immigrants struck me as gentle, friendly, and willing to work at practically anything, particularly if it allowed them to “make it” in this country. There was

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti much discussion about the “Haitian phenomenon” among my colleagues and friends. Most believed that only the brightest and those most driven to succeed were able to gather the resources necessary to allow them to escape to Miami. Life supported by a menial job in this country was superior to a “middle-class” existence in poverty-stricken Haiti, the poorest country in the hemisphere. However, few of my colleagues knew any Haitians, and my knowledge of them remained superficial, limited only to what was necessary to meet their medical needs. There was discussion at work as to whether they really sailed from Haiti to Miami in their handcrafted, open sailboats. Some thought they flew to the Bahamas and then were crammed into boats at so much per head and towed across the Gulf Stream by organized smugglers. When pressed, however, the people who felt this way could produce no proof other than incredulousness that anyone could survive a journey under such adverse conditions or the fact that their clothes were always so neat and pressed when they arrived. The Haitians later told me that their tradition was to always bring a carefully wrapped and protected change of clothes to mark their arrival and make a good impression in America. Ironically, those clean, neatly pressed clothes often reflected the colors that characterize one of the island nation’s most intriguing contradictions—blue and white (symbolic of Christianity), and red and black (symbolic of Voodoo). At the time, I kept my sailboat moored at Crandon Park on Key Biscayne. For a time the Coast Guard kept all confiscated Haitian vessels there, lashed together two or three to a mooring. I would have to row past them in my dingy to get to my boat. Although the boats themselves were handsomely crafted examples of folk art, to look at them it certainly seemed incredible that they had survived an ocean crossing. They averaged 35 feet in length, with brightly painted wooden hulls, fine lines, broad beams, and hand-hewn tree trunks for masts. Landing on our beaches, each boat carried 60 to 80 people. I simply could not imagine that many people traveling 700 miles in an open boat. One day I rowed over to one for a closer look. Peering

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti over the gunwales, I stared at the inside of the hull stained with the grim but unmistakable colors of diarrhea, blood, and vomit. What must drive these people to risk such an ordeal? I wondered. And how many people have died completely unknown in the passage? By early 1980 I sensed that something strange, different, and desperate was happening to some of our Haitian patients. Before 1980, spectacular illnesses caught our attention for teaching purposes like an exploding firework and faded just as quickly. Gradually, however, several faculty members simultaneously realized that what was happening to some Haitians was different from the rare, sporadic illnesses that not infrequently presented themselves to our training program. The patients with these diseases were “classics,” behaving in accordance with the classic laws of medicine. But there was nothing classic about what was happening to the Haitians. Some of their illnesses defied all the rules, both in their severity and in the manner of presentation. At first we ascribed the severity of their illnesses to familiar problems in developing countries—poverty, malnutrition, and tuberculosis. By early 1980, however, there were just too many facts emerging to let us continue in our complacency. The illnesses were so bizarre that Lynn, the chair of family medicine, invited a Voodoo priest to consult with him. “It can’t hurt,” he explained, “and some Haitians truly believe they have a spell cast on them.” Word of this consultation spread rapidly through the medical center. While Lynn already had a reputation as being something of an eccentric, the Voodoo priest episode only cemented that impression among most of his peers. To me the patients with these strange illnesses seemed terribly frightened, and medical science had little to offer them to assuage their fears. Lynn may have been onto something after all. The first person I met who, in retrospect, had acquired immunodeficiency syndrome came into the general medical clinic on a Wednesday afternoon sometime in the fall of 1979. One of the residents who was scheduled to see patients that afternoon fell ill unexpectedly, and I was helping out by seeing some of his patients.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti One of them, Jean Baptiste, had just been discharged from the hospital two weeks earlier with the diagnosis of tuberculosis. Since we had effective treatments for tuberculosis, he was supposed to be getting better, but he wasn’t. He was emaciated, he could barely walk, and when he did, he fell to one side. His face drooped on the left, and he had signs of spasticity, which indicated that something was the matter with his central nervous system. When I told the senior emergency room resident that I was sending a patient down to be admitted, my presentation was greeted with the kind of skepticism that only a hectic day in our emergency room could generate. “You’ve got to give him time to heal, Art. You’ve got a biopsy-proven diagnosis. He just needs enough time to get better.” When I insisted that he be admitted, the resident finally gave in and said: “Okay, send him down and we’ll take care of him.” One week later Jean Baptiste came back to the clinic, having been discharged from the emergency room. By this time he was too weak to walk and had to be assisted by friends. This time I forced his admission on the emergency room with the threat of disciplinary action. Jean Baptiste was admitted to Lanny’s ward team. Lanny, in addition to being my division chief, was also the director of the training program. In those days we used to carpool to work together. While riding into work the following morning I mentioned the case of Jean Baptiste as an example of the tribulations of junior faculty dealing with know-it-all senior residents. Returning home that evening, Lanny informed me that Jean Baptiste was certainly gravely ill and Lanny wondered about the possibility of tuberculous meningitis. Two days later he told me that a CAT scan of Jean Baptiste’s brain showed several large lesions. The working diagnosis was tuberculomas of the brain, a rare localized collection of tubercular pus in a place that it normally should not be. Over the next two weeks Jean Baptiste continued to deteriorate and finally died despite heroic efforts on the part of Lanny’s ward team. Lanny’s assessment was that he just had too much disease and

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti had come in too late. This seemed like a reasonable explanation at the time. The story of Jean Baptiste became another vignette for me to pass on to my colleagues as we traded stories of the amazing illnesses that were so often cared for on our wards. Over the next several months these horror stories, traded among the faculty over coffee or between case presentations in the clinic, clearly seemed to involve a disproportionate number of Haitians. Nearly all of them had tuberculosis, not the usual kind involving the lungs, but tuberculosis that spread through the lymph nodes, the liver, or throughout the whole body. We all had cases of tuberculosis discovered in the tonsils or under the vocal cords, by liver biopsy, or by spinal tap. We were amazed that a disease we thought we knew so well could behave so virulently. But it still remained a phenomenon, a spectacular disease caused by a particularly virulent strain of tuberculosis, perhaps compounded by malnutrition and living in close quarters. Many would temporarily get better with treatment. Some developed strange neurological symptoms or superimposed pneumonia. These patients invariably died. I don’t remember who among the faculty first suggested that we group together to study the problem. We all shared a vague sense that something important was going on. Little did we know it would be the greatest medical mystery of our lifetimes. With the exception of Gordon from infectious diseases, we were all from general medicine. Danny and Mark worked closely with me in our particular part of the training program. Art P. was older than the rest of us and had a background in pulmonary medicine, before joining general medicine two years previously. Margaret was junior to Art P., Gordon, and me, but soon took an informal leadership role in the project. Robby, one of our chief residents, rounded out the group. Soon we were meeting on a regular basis. Already we had each come to the independent conclusion that disease fostered by poverty and neglect did not completely explain the remarkable illnesses we were seeing. These patients were men and women from various walks of life—housewives, students, migrant laborers. The only thing they

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti seemed to share was the fact that they had emigrated from Haiti. We all had theories. I was most interested in why tuberculosis was not confined to the lungs, as is usually the case, but rather spread throughout the body. Art P., who knew a lot about tuberculosis, was not impressed with this. He thought disseminated tuberculosis was always more common in younger populations. Danny was interested in how malnutrition might explain what was happening. Mark and Gordon were more interested in the various kinds of unusual infections. We decided to review all Haitian admissions during the previous year according to a clinical research protocol. In addition to tuberculosis, several unusual infections were documented. Strangely, a single patient frequently had more than one unusual infection. Some patients received an autopsy after they died. We were surprised to find that what we had assumed to be tuberculosis was frequently a parasitic infection of the brain. Suddenly, our pathologists became interested. New information began falling into place. Fungal infections of the central nervous system, other infections that usually affect only cancer patients receiving chemotherapy, and disseminated viral infections were discovered by our review. My focus on the question of tuberculosis clearly was too narrow. Our patients were behaving as if their immune systems weren’t working. Our suspicions grew further when the pathologists began reporting pneumocystis in biopsy and autopsy specimens. Pneumocystis is an amoeba-like organism that only infects patients with weakened immune systems. The Haitian AIDS mystery began to unfold.