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THE ZOMBIE CURSE



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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti THE ZOMBIE CURSE

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti THE ZOMBIE CURSE A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Arthur M. Fournier, M.D. with Daniel Herlihy Joseph Henry Press Washington, D.C.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Joseph Henry Press 500 Fifth Street, NW Washington, DC 20001 The Joseph Henry Press, an imprint of the National Academies Press, was created with the goal of making books on science, technology, and health more widely available to professionals and the public. Joseph Henry was one of the founders of the National Academy of Sciences and a leader in early American science. Any opinions, findings, conclusions, or recommendations expressed in this volume are those of the author and do not necessarily reflect the views of the National Academy of Sciences or its affiliated institutions. Library of Congress Cataloging-in-Publication Data Fournier, Arthur M. (Arthur Michael), 1947- The zombie curse : a doctor’s 25-year journey into the heart of the AIDS epidemic in Haiti / Arthur M. Fournier, with Daniel Herlihy. p. cm. Includes bibliographical references and index. ISBN 0-309-09736-3 (cloth : alk. paper) 1. AIDS (Disease)—Haiti. I. Herlihy, Daniel. II. Title. [DNLM: 1. Acquired Immunodeficiency Syndrome—epidemiology—Personal narratives. 2. Physicians. 3. Florida. 4. Haiti—epidemiology. WC 503.4 DH2 F778z 2006] RA643.86.H35F68 2006 362.196′97920097294—dc22 2005031643 Cover design by Michele de la Menardiere. Photo ©Robert W. Kelley, Time and Life Pictures Collection. Creole orthography by Jan Mapou. Copyright 2006 by Arthur M. Fournier. All rights reserved. Printed in the United States of America

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Contents Acknowledgments   vii Foreword By Paul Farmer   ix Preface   xvii PART I THE CURSE DESCENDS         Boat People   3     Morts et Mystères   11     Régis   18     Blood Brothers   24     Zombie   32     Revelations   43     Sainthood   50     Guinen   54     Danse Macabre   57     Mother and Child   62     Lespwa (Hope)   68     Anniversary   71

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti     Physician, Heal Thyself   76     Ninja   87     All Good Things   98 PART II SECRETS REVEALED         Titid   105     Port-au-Prince   111     Cité Soleil   123     Lost   133     Secrets of the Zombie Curse   141     Medishare, Inc.   146     House Calls   151     Dèyè Mòn Gen Mòn   158     Tom’s World   169     Exposition Santé   181     Close Encounters   185     Marasa   192     Mambo   198     Baptism   207     Kay Medishare   213     Orphans   217     Protégé   223     Benediction   230     Discovery   239     War and Peace   243     Au Cap   249     The Reverse Zombie Curse   256     Conundrum   267     Angelik   271     Bicentennial   280     Postscript   294 A Poem for Haiti By Maya Angelou   297 Index   299

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Acknowledgments I WOULD LIKE TO ACKNOWLEDGE Dan Herlihy, my best friend from college, for assisting me by critiquing, editing, and word-crafting this manuscript. Dan was an English major in college and taught English for 35 years. It’s not easy being a first-time author. Without the encouragement he provided and the discipline he inflicted, this work would probably be unreadable, and assuredly a lot less interesting. In addition, Denise Fluellen-Bradley, Marie Bennett, and Sonia Page provided invaluable assistance in the preparation of the manuscript. I would also like to acknowledge the Open Society Institute, Partners in Health, and the Green Family Foundation for their support of Medishare (my charity in Haiti). These are three very different organizations in terms of endowment, mission, and focus. Each empowered Medishare in a different way—OSI by funding our family medicine residency training program for Haitian doctors, Partners in Health for showing the way to develop a preferential option for the poor, and the Green Family Foundation by developing our community health program in Thomonde. With their help (and yours, since the royalties from this book will further support our work) the shaky little charity founded by Dr. Barth Green and my-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti self 11 years ago can now stand on its own two feet. Finally, I would like to acknowledge the hours of dedicated service contributed to Medishare by doctors, nurses, medical students, and health care workers—Haitians and Americans—in partnership and solidarity with the most remarkable people in the Western Hemisphere. Bon sante a tout moun!

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Foreword By Paul Farmer EACH YEAR, THOUSANDS OF Americans come to Haiti to “help out.” Our neighbor is, as the cliché goes, the poorest country in the hemisphere and one of the poorest in the world; surely it could use some help from its rich neighbor to the north. But what kind of help, exactly? My friend and colleague Arthur Fournier’s answers to this question change subtly as the two decades chronicled in his book unfold. The answers change as he learns more about Haitians; of course Haiti and the United States, and their tortured relations, change, too. But The Zombie Curse is not a sociological or historical text, nor is it a report about Fournier’s projects in Haiti. Fournier’s book is a memoir, and, as in all honest memoirs, Fournier is really writing of his own personal experience as an American doctor living in a metropolis that is anything but culturally homogeneous. Miami is, as much as Haiti, at the center of this tale. Fournier’s is an often-riveting book, in great part because he tells us how he learned about AIDS from his patients—first in Miami and then in Haiti. The AIDS epidemic also changes with time, and the more time Fournier spends in Haiti, the more he senses that AIDS is, now more than ever, about poverty and inequality. This is a hard lesson for physicians to learn, and Fournier relates with admi-

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti rable candor his own role in spreading, unintentionally, early inaccuracies about AIDS in Haiti. Fournier tells how he found himself quite unpopular among certain new acquaintances in Haiti, which had been inaccurately branded as the source of the much larger epidemic to the north. For a while, in Miami as elsewhere in the eastern United States, the Haiti-as-source-of-AIDS myth ruled supreme. Sitting with a group of Haitian professionals complaining about their stigmatization as a nation, Fournier “confessed my own role in the Haitian AIDS study.” How could you have done that? comes their reply. It is this sort of candid detail that makes this book worth reading. Fournier’s first visits to Haiti are brief ones, as are those of most American do-gooders—I use this term without irony, for reasons to be revealed below. We hear, often and in this book, that such short trips change the lives of those, especially students, who take them. In my experience as a medical school professor, this is almost invariably true. But the trick is to change lives in Haiti, and to change them for the better. That’s the hard part, and the discovery that changing lives is difficult is a leitmotiv of this memoir. Once in Haiti, Fournier learns about its cultural complexities—the ones not readily visible from Miami—and vertiginous class structure. He comes to see how violence is inevitably born of great inequality. This is another painful lesson, since his colleagues are largely from the professional classes; his patients, by and large, are the destitute. Violence is a recurring theme in the latter half of the book because Fournier’s efforts, like those of most “humanitarian” groups—including ours—working in Haiti, have not yet been effective in diminishing the social divide that so damages that country. Fournier worries about the outbreak of “civil war,” but in fact civil strife of this sort is unlikely in Haiti, since only one side is really armed. The violence comes mostly from above. In this book, Fournier presents his work, and the work of our organization, Partners In Health, as successful; and of course this is gratifying to read. But humanitarian medicine alone will not suffice

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti to stanch the wounds he sees everywhere in Haiti. We read that this term—“humanitarian medicine”—causes some academic conflict in Fournier’s home institution as he and his co-workers seek to link their efforts to Miami’s flagship university. These debates were new to Fournier, he allows, but they are not new. David Rieff is mentioned in the book, and Rieff’s cautionary work on humanitarian aid is well worth reading. But for the reader who wants to hear only about medicine and public health in settings marred by violence, listen to Dr. Gino Strada, an Italian surgeon who decided, after becoming a successful transplant surgeon, that he would try to help civilians—most of them children—injured by land mines and other man-made pathogens. After a decade of this grueling work, in Rwanda and Pakistan and many other places, what Strada found most worrying was the fact that many organizations, to which I find it hard to apply the adjective “humanitarian,” had accepted money from the governments engaged in the war without a moment’s hesitation. Pecunia non olet! (Money doesn’t stink!) This was the philosophy adopted by a great many non-governmental organizations (NGOs), in a great hurry not to miss the opportunity, without pausing to reflect on their actions. And without detecting the trap.1 Such traps are set across Haiti, which probably boasts, per capita, more NGOs than any other poor country. And here’s a dilemma for all of us: if there are so many NGOs, why is the situation still so grim? How might us do-gooders do better? Universities, too, are waking up to global health and to human rights work, and finding an academic field littered with landmines. Will the traditional products of a university—more studies, more seminars, more publications—be enough? The most experienced hands in poverty reduction are not always sanguine on this score. When Stephen Lewis, U.N. Special Envoy for HIV/AIDS in Africa, writes about the need for 1   Strada G. Green Parrots: A War Surgeon’s Diary. Milan: Charta, 2005, p. 134.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti universal education, he describes “an avalanche of studies, little studying.”2 That is, study after study has shown the importance of universal primary education, even as an AIDS-reduction strategy, but very few children are in school. We all need optimism, and this book is optimistic. One of its recurring themes is the author’s passion for bringing fellow Miamians on-board a crusade to engage his wealthy metropolis, including its Haitian residents and its powerful university, with the long-suffering but proud people of Haiti. Since Fournier and I are both American physicians working in Haiti, and since we work together on certain projects, I’d like to expand on my own views on this crusade. At one point in the text, I am described as “skeptical” about the value of most short-term medical missions to Haiti, and this is true if we’re concerned about taking on the most pressing health problems in Haiti and about learning a new way of engaging the citizens of our two countries, the oldest two in the hemisphere. Let me take each of these two worthwhile issues—which would help us do-gooders do better—in turn. First, how do we take on Haiti’s most pressing health problems? Here, short-term medical (as opposed to surgical) missions will often fail, since those who would prevent or treat chronic diseases such as AIDS, tuberculosis, or hypertension need to have a regular presence in the communities served. Also needed are fewer screenings—treatable disease is everywhere—and more follow-up care, and this comes only from determined efforts to rebuild Haiti’s public health system and to support our Haitian colleagues so that they can serve their fellow citizens. Not with sporadic assistance, but with regular support for community health workers, doctors, nurses, and others. And that is what Medishare, the NGO Fournier helped to found, is now doing in central and northern Haiti; Partners In Health is proud to be a part of these efforts. 2   Lewis S. Race Against Time. Toronto: House of Anansi Press, 2005, p. 71.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti What of the second project, that of learning to engage with Haiti and Haitians in a respectful and mindful manner? This need is as urgent as the first one; these two issues are in fact intimately intertwined, as Fournier reveals. The book’s title is taken not from lurid Hollywood notions of Haitian folk religion but rather refers to the great gift Fournier received from the Haitians, who lifted the zombie curse in question: his own. “I had the zombie curse of a comfortable life in the United States,” he writes affectingly. The notion of zombies is a product of the slave plantation era in Haiti, a time when the French used Africans as things, exploiting cruelly their labor without payment other than the lash, or worse. Haitians say that a zombie is freed if it tastes salt, and Fournier tasted salt in Haiti and in caring for impoverished patients in the United States and in Haiti. Once an American who goes to Haiti is freed from the zombielike condition that keeps us blind about Haiti, once the torpor is lifted, we see the sorry spectacle of our treatment of our neighbors so hard by Miami. From 1804 to the present: over a dozen trade embargoes imposed by U.S. governments; our refusal to recognize diplomatically, until after our own Emancipation Proclamation, a nation born of a slave revolt; gunboat diplomacy; our invasion and armed occupation of Haiti during the first half of the twentieth century; our subsequent support of military dictatorships; and, most recently, our involvement in undermining, rather than strengthening, Haiti’s nascent democracy. To this very day, the impact of these events on medicine and public health is profound.3 But too many missionaries and short-term medical visitors can’t be bothered with these details. How much homework do we have to do in order to do good work in Haiti and 3   Regarding the impact on health of recent embargoes, see: P. Farmer, M.C. Smith Fawzi, and P. Nevil. Unjust Embargo of Aid for Haiti. Lancet 2003;361(9355):420-3. The public health ramifications of the most recent coup d’état—Haiti’s 33rd—are discussed in: P. Farmer. Political Violence and Public Health in Haiti. New England Journal of Medicine 2004;350(15):1483-6.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti with Haitians? Does every effort need to be informed by deep knowledge of Haitian history and culture and about our own convoluted history with Haiti? Since it’s hard enough to remember the minutiae of daily clinical practice, do we really have to know about trade embargos and the machinations of what are called “the international financial institutions”? Alas, Fournier’s book suggests, indirectly perhaps, that we do. And so do many others who’ve invested their lives, their medical careers, in providing care to some of the most desperately endangered people in the world. Dr. Strada, the Italian surgeon cited above, concludes that he was wrong not to have done all the homework on what might be called the political economy of the surgical disease he was seeing: We thought that war was an old, primitive instrument, a cancer that mankind did not know how to eradicate; on this point we were mistaken. Tragically, we—and not only we—had failed to see that war, rather than being a burdensome inheritance from the past, was becoming a fearful prospect for our future and for generations to come. In the operating theatre we saw the devastation produced in human bodies by bombs and mines, by projectiles and rockets. Yet we did not succeed in grasping the effects of other weapons, “unconventional” ones: finance and international loans, trade agreements, the “structural adjustments” imposed on the policies of many poor countries, the new arms races in richer countries.4 Not many readers of The Zombie Curse will be interested, a priori, in “finance and international loans, trade agreements, the ‘structural adjustments’ imposed” from above. But if we wish, like Fournier, to improve the health of the Haitian poor, we’ll have to learn much more about such dismal topics. In the end, The Zombie Curse reads to me as one American’s physician’s discovery not simply of Haiti or poverty or AIDS. It’s about his voyage of discovery about human rights and where they fit 4   Strada, p. 132.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti in medicine and public health. Seeing health care as a right is a worthy goal, but the path forward is never easy, as this book shows us. It is difficult because ill health is caused mostly by poverty and violence and inequality—and what are we doing to fight those? The more time we spend among the destitute sick, the more we see that the short-term goal of attending to the patient in front of us must be linked to the duty of calling attention to the inadequacy of our own best efforts. The goal of alleviating human suffering must also be linked to the task of bringing others, including those who might read a book written in English, into a movement for basic rights. Paul Farmer, M.D., Ph.D. December 2005 Cange, Haiti

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Preface IN THE LATE 1970S AND EARLY 1980S two diseases crept into my professional and personal lives that would change both forever. The first was the newly emerging AIDS virus, a germ that has proven smarter than most of the doctors trying to fight it. The second was one that proved even more difficult to conquer. Beginning in 1979, as a faculty physician at the University of Miami School of Medicine, working at its affiliated Jackson Memorial Hospital, I saw firsthand the chaos, confusion, and blame associated with the spread of AIDS. Part I of this story examines the early days of the epidemic in Miami. In particular, the story concerns itself with patients admitted to Jackson Memorial, which serves 400,000 of Miami-Dade County’s poorest residents. Nationally, the first groups to be blamed for AIDS were gay men and intravenous drug users. Many old prejudices and stereotypes combined to make these groups easy scapegoats. In Miami, however, a new group of victims emerged. These were Haitian immigrants—proud people who had fled the crushing poverty and tyranny of their island nation for a better life in America. At Jackson the number of Haitian victims dwarfed those of the other groups. A new scapegoat had arrived.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Nothing in my background, education, or training could have prepared me for the misery and mysteries of the early days. I grew up just north of Boston. For all its veneer of cosmopolitan liberality, Boston is arguably the most provincial city in the United States, particularly in the blue-collar neighborhoods of my youth. At that time Boston was de facto segregated. Black people were hardly ever seen in our neighborhood, even though it was poor. Haiti was unheard of, and Haitian people were completely unknown. In college I was vaguely aware of the rise of “Papa Doc” Duvalier and the Ton Ton Macoutes, but Haiti was a minor issue compared to Vietnam, the Cold War, and civil rights. I probably did not even know that Haiti was overwhelmingly black, peopled by descendants of the world’s only successful slave revolt. My immigrant Boston blue-collar upbringing was also quite proper. Openly gay people were even rarer in our neighborhood than Haitians, but it was the AIDS epidemic, more than anything else, that brought homosexuality out of the American closet. Ignorance of the gay experience was a significant contributor to the confusion that physicians, myself included, experienced when AIDS first surfaced in New York City, San Francisco, and Miami. At that time, homosexuality was considered a perversion or a psychiatric disease, not only by society at large but also by most in the medical profession. Even the vibrant milieu of Miami, perhaps America’s most culturally diverse city, was not, in itself, sufficient to understand or deal effectively with the epidemic that was about to overwhelm our community. Looking back, I believe that we of the University of Miami School of Medicine’s* faculty fulfilled our obligations to our patients in the traditional manner of medical education—dissecting our patients’ signs and symptoms and focusing on diagnosis and treatment. *   For most of the time frame of this book, the medical school at Miami was called the University of Miami School of Medicine. The name was changed to the University of Miami Miller School of Medicine in 2004.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti We were, however, often naive as to who our patients really were as people, not just as repositories of disease. Unfortunately, we were not the only physicians to struggle against a cultural or socioeconomic gap. This is our system. Few challenge it, and few expect more from their physicians than just to know medicine. In fact, the socioeconomic divisions between doctors and their patients may have been a major factor in allowing the virus that causes AIDS to outsmart us at every turn. For example, in 1983, I coauthored an article that was later used to label Haitians as “at risk” for AIDS. This stigmatization led to discrimination, an adverse immigration policy in the United States, and feelings of persecution and denial among Haitians. In retrospect, that study was the first clue as to how the AIDS virus would leap from one population (gay men in the United States), to another (men, women, and children in an impoverished country). In fact, in the two decades since that article, AIDS has indeed morphed from a disease predominantly of gay men in the United States into an epidemic that is overwhelmingly affecting poor people worldwide. The differential burden of an epidemic on the poor is a classic tenet of the epidemiology of infectious diseases. The failure of the public and the professional consciousness to grasp the relevance of this principle to the AIDS epidemic has stymied efforts to contain it. Medical science is obsessed with finding a cure. Because of the tremendous progress toward that goal, for people of means AIDS has become a chronic, manageable disease. But the epidemic continues to rage out of control among the poor. My generation of physicians grew up in an era of antibiotics, believing that all infectious diseases were conquerable. The ability to cure, which we took for granted, was in truth a limited and transient victory for medicine, with a huge downside: It made us lazy. In reality we can prevent illness, we can diagnose, we can ameliorate symptoms, and we can prolong life, perhaps dramatically. To a certain extent we can predict the future, but we can rarely cure. Even when we can cure, many are left behind and that is an injustice.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti The second disease was more spiritual than physical. Part II will show how it took my experiences in Haiti to awaken me to the reality of this metaphysical malady, which I call “the zombie curse,” as it afflicted my patients, my profession, and myself. Before going to Haiti, I asked myself the same questions everyone else was asking: Why do Haitians get AIDS? What is it about gay sex that puts gay men at risk? These questions, in reality, were counterproductive. The concept of risk factors had limited utility in the beginning of the epidemic. Now we know the disease is caused by a virus. But the “risk factor” concept persists in the public consciousness, reinforcing the prejudice that the victims are somehow to blame for their own fate or, conversely, that “It can’t happen to me.” In truth, Haitians aren’t at risk for AIDS, and neither are other ethnic groups or gay men, except to the extent that they are exposed to the virus by contact with others who are infected. While, in general, this involves sex with an infected person, there are, as we shall see, exceptions. In the secret world of HIV—among the homeless, the poor minorities of America’s cities and the poor in developing countries—the spread of the disease is inextricably linked to poverty. Interestingly, few scientific studies have addressed the effects of socioeconomic factors on traditional risk groups such as gay men, minorities, or people from developing countries. Moreover, until recently, few in the United States had looked at disparities in health as a function of socioeconomic class as opposed to race. This line of reasoning leads to an important corollary: If we want to win the war against AIDS, medical progress must march hand in hand with socioeconomic progress for the poor and social justice for all “minorities.” I laugh as I write this, for those who suffer disproportionately from AIDS and other scourges—the poor, women, gays—are, from a global perspective, the overwhelming majority. The perception of AIDS as a disease of gays and drug users created a stigma surrounding the disease that even today further complicates efforts to fight it. The vignettes of AIDS victims included here are intended to open your eyes to the suffering and anguish

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti caused by AIDS—not just the physical anguish but also the emotional pain inflicted by ostracism, withdrawal, stereotype, and blame. All of my patients, in their own way, were remarkable. If, as a physician, I could not save their lives, perhaps this recounting of their struggles can make their lives and their struggles more meaningful. Is there an antidote to this doom and gloom? The answer is yes, and it is to be found in the most improbable of places. The story, therefore, is no longer just about AIDS and suffering. It is also about remarkable people who, if we’re willing to listen, can show us a way out. My first trip to Haiti happened almost by accident. Now, more than 100 trips and 11 years later, it seems less accidental. I’ve wondered half humorously, half seriously, if perhaps a voodoo saint interceded to bring Haiti and me together. At any rate, that first trip was a life-transforming event that evolved into a long-term commitment to the Haitian people. That commitment has, paradoxically, benefited me more than I’ve been able to benefit Haiti. Finally, I’ve learned how to effectively fulfill my commitment to serve the poor. For two decades I had been fighting a losing battle against a virus. Now, thanks to Haiti, I’m beginning to learn how to fight back. Haiti is the poorest country in the Western Hemisphere. This is not the fault of the Haitian people. The reasons for Haiti’s poverty can be found in its history and its relationship to Western powers, particularly France and the United States. That history is beyond the scope of this preface, but I would encourage interested readers to learn more about it through books such as Paul Farmer’s The Uses of Haiti (Common Courage Publishing, 2003). Despite its poverty, or perhaps because of it, Haiti is culturally and spiritually one of the richest nations on earth. Right now, out of that richness, answers to not just the AIDS epidemic but all of the scourges that afflict the poor are being born. Ironically, the colors, contrasts, and contradictions of this impoverished country have come together to teach my students and me more than all of our formal schooling ever could. The mysteries, magic, and faith of the Haitian people have liberated us from our own zombie curse.

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The Zombie Curse: A Doctor’s 25-Year Journey into the Heart of the AIDS Epidemic in Haiti Haiti, Map No. 3855 Rev. 3, June 2004. Courtesy of the Cartographic Section, Department of Peacekeeping Operations, United Nations.