The Invisible Cure: Why We Are Losing the Fight Against AIDS in Africa

A New York Times Notable Book of 2007

The Invisible Cure is an account of Africa's AIDS epidemic from the inside--a revelatory dispatch from the intersection of village life, government intervention, and international aid. Helen Epstein left her job in the US in 1993 to move to Uganda, where she began work on a test vaccine for HIV. Once there, she met patients, doctors, politicians, and aid workers, and began exploring the problem of AIDS in Africa through the lenses of medicine, politics, economics, and sociology. Amid the catastrophic failure to reverse the epidemic, she discovered a village-based solution that could prove more effective than any network of government intervention and international aid, an intuitive response that calls into question many of the fundamental assumptions about the AIDS in Africa.

Written with conviction, knowledge, and insight, The Invisible Cure will change how we think about the worst health crisis of the past century--and indeed about every issue of global public health. Helen Epstein writes frequently on public health for various publications, including The New York Review of Books and The New York Times Magazine. She is currently a visiting research scholar at the Center for Health and Wellbeing at Princeton University. A New York Times Notable Book of the Year In 1993, Helen Epstein, a scientist working with a biotechnology company searching for an AIDS vaccine, moved to Uganda, where she witnessed firsthand the suffering caused by the epidemic. Now, in her unsparing and illuminating account of this global disease, she describes how international health experts, governments, and ordinary Africans have struggled to understand the rapid and devastating spread of the disease in Africa, and traces the changes wrought by new medical developments and emerging political realities. It is an account of scientific discovery and intrigue with implications far beyond the fight against one tragic disease.  The AIDS epidemic is partly a consequence of the rapid transition of African societies from an agrarian past to an impoverished present. Millions of African people have yet to find a place in an increasingly globalized world, and their poverty and social dislocation have generated an earthquake in gender relations that deeply affects the spread of HIV. But Epstein argues that there are solutions to this crisis, and some of the most effective ones may be simpler than many people assume.  Written with conviction, knowledge, and insight, The Invisible Cure will change how we think about the worst health crisis of the past century, and our strategies for improving global public health. “Reading The Invisible Cure is like traveling into remote and hard-to-comprehend territory with an unblinking and sure-footed guide . . . [Epstein] teaches me things I didnt know. Her rigorous reporting unearths new findings among old, worn-out issues. And the evidence she puts forward could provide a roadmap for comprehensive prevention programs that incorporate teaching abstinence, using condoms and, most critically, emphasizing fidelity.”—John Donnelly, The New York Times Book Review “Amid the partisan babble, Helen Epstein has for years generated some of the most sensible commentary around, posting dispatches from AIDS-afflicted countries in Africa to The New York Review of Books and other publications. As a scientist morphed into a journalist, Dr. Epstein combines an understanding of the biology of AIDS with a coolly impartial view of the political and social landscape of Africa. She has now assembled more than a decades worth of reporting into an enlightening and troubling book . . . Dr. Epstein makes a good case for the efficacy of a pervasive grass-roots effort, with ordinary people talking openly about AIDS and caring for the sick and orphaned in hundreds of small community initiatives in a ‘spirit of collective action and mutual aid . . . Throughout the book, Dr. Epstein paints an unforgettably nuanced portrait of Western efforts in Africa: well-meaning, vitally necessary and yet often so misguided.”—Abigail Zuger, M.D., The New York Times

“Reading The Invisible Cure is like traveling into remote and hard-to-comprehend territory with an unblinking and sure-footed guide. After five years in Washington covering the politics of AIDS and three years in Africa writing about the lives of those infected and affected, in truth, I have little patience for books on AIDS in Africa. With few exceptions, they tend to be too self-important, too polemical, too grim or too at odds with my experiences in the field. Epstein, in contrast, teaches me things I didnt know. Her rigorous reporting unearths new findings among old, worn-out issues. And the evidence she puts forward could provide a roadmap for comprehensive prevention programs that incorporate teaching abstinence, using condoms and, most critically, emphasizing fidelity.”—John Donnelly, The New York Times Book Review

“One of the classic works of journalism of the last couple of decades was Randy Shiltss And the Band Played On, about the sluggish response to AIDS in the 1980s in the United States, which indicted both the Reagan administration and the leaders of the gay community. I still remember the sense of outrage I felt when reading Shiltss book; it struck just the right note, leaving one both horrified about the tragic incompetence of so many and yet also hopeful that someone, somewhere could do things better next time. Yet after reading Helen Epsteins masterful new book, the response to AIDS in America now looks in retrospect like a model of courage, speed, and efficiency by comparison with the response in Africa . . . Epsteins book lays all this out in courageous and thought-provoking detail, describing the maddening complexity of the AIDS crisis in Africa, and the reprehensible and simplistic evasions of nearly everyone involved. It is not only a book that should be required reading for people concerned in the least with AIDS or with Africa; it is also compulsively readable . . . Just read The Invisible Cure. If you do, you will be mortified that such an epic tragedy has found so few heroes and so many opportunists and bumblers. And youll hope that someone will do better next time. Except that this particular next time is already here.”—William Easterly, The New York Review of Books

"In the early 1990s, Helen Epstein, an idealistic molecular biologist . . . headed for Uganda to devote herself to a more tangible goal: developing an AIDS vaccine. Her results, she writes, ‘were disappointing. Unfazed, Epstein changed her focus to public health, specifically the cultural, sociological and economic factors that contribute to the spread of AIDS in southern Africa. Ever a skeptic, Epstein set out to find answers on her own, meeting with doctors, other aid workers and, most important, Africans themselves. In The Invisible Cure she recounts her discoveries with clarity and conviction. The tone and scope of the book are scholarly but lightened by Epstein's eloquent writing style and her ability to explain abstract scientific concepts in plain English. As its subtitle suggests, the book is also a critique of AIDS policies that don't take into account African mores and a call for more ‘initiatives that are truly locally conceived and controlled. At the heart of her case lies a philosophical shift: ‘Most of us see only Africa's contours, and we use them to map out problems of our own, she writes, but ‘you must enter a different world, follow its logic, and forget your own."—The Washington Post Book World

“Her book is intelligent and judicious . . . What she found is informative.”—D.T. Max, Los Angeles Times

“It takes a great deal of confidence to name a book about this disease The Invisible Cure. Luckily, Helen Epstein has a compelling thesis, and she explains it in lucid, sometimes extraordinary, prose.”—Andrew Rice, The Nation

“In The Invisible Cure, molecular biologist-turned-journalist Dr. Helen Epstein ponders the virulence of the African AIDS pandemic. With authority rendered by her scientific background, her investigative and interpretive skills lend a particularly credible tone to the book. Leaving a budding career studying aphid biology, she arrived in Uganda in 1993 with the Chiron Company in search of an AIDS vaccine. In a series of stellar articles on AIDS for The New York Review of Books and The New York Times Magazine, Epstein since has reported on the scientific side of the African AIDS epidemic. Covering various AIDS treatments and programs, Dr. Epsteins work is both a history and an analysis of the current situation in Africa . . . Dr. Epstein examines in depth one thing that could lead to the invisible cure alluded to in the title of her book: cessation of concurrent long-term sexual relationships, which she terms ‘concurrency. Part of African culture, ‘concurrency refers to the common African practice of having two or three sexual partners simultaneously . . . Dr. Epstein illustrates how infection occurs in concurrency versus serial monogamy relationships . . . By writing The Invisible Cure, Dr. Epstein has done a great service to humanity by reminding us that complacency and knee-jerk assumptions do more harm than good. The Invisible Cure abounds with lessons learned. And not just for those working with the African AIDS pandemic. As we strive to help those less fortunate in less developed areas of our world, it is crucial to listen to the suffering people at the other end of the money. Dr. Epstein prompts us to apply those lessons learned to our own culture. And that is the ultimate value of The Invisible Cure: The beam in our own eyes looms large as we stare at the splinter in our neighbors.”—Cynthia D. Bertelsen, National Catholic Reporter

“An excellent primer on the complicated relationship between American medical science and philanthropy, and the public-health crisis in Africa . . . At the center of Epsteins argument is a detailed discussion of how and why Western philanthropists and scientists initially misunderstood the African context for AIDS . . . The Invisible Cure reminds American readers that while good intentions are necessary, theyre rarely enough. As Epsteins balanced account shows, ignorant good will can be as harmful as neglect.”—Melissa M. Matthes, Commonweal

“Helen Epstein is a biologist who volunteered to study a potential HIV vaccine in Uganda in 1993. The Invisible Cure is her autobiographical account of 15 years observing both the epidemic and the reactions to it of Western scientists, humanitarian agencies, and the communities most affected by AIDS death. Lucid, scientifically accurate, and well referenced, The Invisible Cure is in many ways more informative than any multimillion-dollar international AIDS conference or collection of regression analyses in a peer-reviewed journal. It compels the reader to ask why so many mistakes were made—and continue to be made—in HIV prevention. Again and again, emotion has trumped evidence, and groups of professionals have failed to use the growing corpus of knowledge about prevention in a speedy, appropriate way.”—Malcolm Potts, University of California, Berkeley, Population and Development Review

“With elegant prose, a scientific background and a journalists searching anecdotal eye, Epstein combines personal research and corroborative evidence from others to posit the view that where Africas AIDS rates are highest, the key difference is not the numbers of sexual partners, but the timing . . . She argues persuasively that the UN has long known that reduction in the number of sexual partners has been a factor wherever rates have fallen, from Uganda to San Francisco, and yet it refuses to act on it.”—Stephen Lewis and Paula Donovan, Nature

“Intelligent and judicious . . . A reliable primer on the African [AIDS] epidemic.”—Newsday

“Vivid descriptions of personalities, anecdotes, and organizations . . . [Epsteins] careful reporting and passionate stance make this book well worth reading.”—Foreign Affairs

“Provides vital insights into this ongoing tragedy . . . reminds us of our common humanity and our moral obligation to help people who share dreams and aspirations similar to our own lives of peace and mutual respect.”—Chattanooga Times Free Press

“Helen Epstein is one of a rare species: the scientist turned storyteller . . . A blunt, informed critique.”—Salon

“The UN and President Bush should not just read Epsteins book, they should distribute it around Africa.”—The Sunday Times (London)

"Her tone is level and undogmatic, but the news that Helen Epstein brings from the African front lines about AIDS is searing. So many lives have been lost, so much time and money wasted in badly designed public and private campaigns against the disease. What actually works is both simple and subtle. There may be no magic bullet—there may never be a vaccine—but there are success stories, even in very poor countries. This is a landmark study."—William Finnegan, author of Cold New World: Growing Up in a Harder Country and A Complicated War: The Harrowing of Mozambique

“Epstein, a molecular biologist who has worked as a researcher, writer, and consultant on AIDS in Africa, explores the nature and underlying causes of the epidemic there. She analyzes why AIDS is so prevalent in Africa, focusing on the political and economic changes that ignited the epidemic as well as the social and sexual customs that fuel it. To Epstein's mind, there is plenty of blame to go around, e.g., concurrent sexual relationships, lack of women's rights, and failed political leadership. She also turns a critical eye to various attempts to slow the epidemic, contrasting the success of early public education campaigns in Uganda with other, less successful attempts. She concludes that the most promising efforts are locally developed projects that address risky behaviors openly and pragmatically, in ways that reflect local cultures and foster a spirit of mutual support and communication. Highly recommended.”—Janet A. Crum, Library Journal

"Public-health specialist Epstein takes a stark yet hopeful look at the AIDS epidemic in Africa. Forty percent of the world's population infected with HIV live in African countries that are home to only three percent of the world's population, she states, illustrating the severity of the problem. Trained as a molecular biologist, the author opens with an account of her naive and frustrated attempts to study HIV in Uganda in 1993. Since then, Epstein has traveled widely in Africa, studying gender relations and developing a theory about the spread of AIDS. She argues that the epidemic has been triggered by upheavals caused by the rapid shift for millions of Africans from an agrarian, tribal society to a semi-urbanized way of life in a bureaucratic state, as well as the consequent disruptive shift in the balance of power between the sexes. She credits Uganda's homegrown Zero Grazing campaign of the 1980s with reducing the HIV rate more than either abstinence or condoms. The program recognized that polygamy, formal or informal, was the norm, but encouraged men to stick to one partner or, if they must have multiple partners, to avoid casual encounters with prostitutes. According to Epstein, such a program could not operate in the current political and religious climate. AIDS, she maintains, is now a multibillion-dollar enterprise with highly paid outside consultants offering a menu of options that fail to consider the cultures of those they seek to reach. What is needed is not just medical treatment for those already infected, but support for community-based, locally conceived and locally controlled preventive initiatives. Critical analysis of a dire situation and a compelling argument for the power of social mobilization."—Kirkus Reviews

"Epstein, a public health specialist and molecular biologist who has worked on AIDS vaccine research, overturns many of our received notions about why AIDS is rampant in Africa and what to do about it. She charges that Western governments and philanthropists, though well-meaning, have been wholly misguided, and that Africans themselves, who understand their own cultures, often know best how to address HIV in their communities. Most significant is Epstein's discussion of concurrent sexual relations in Africa. Africans often engage in two or three long-term concurrent relationships—which proves more conducive to the spread of AIDS than Western-style promiscuity. Persuade Africans to forgo concurrency for monogamy, and the infection rate plummets, as it did in Uganda in the mid-1990s. On the other hand, ad campaigns focused on condom use helped imply falsely that only prostitutes and truck drivers get AIDS. In addition, Epstein examines what she calls the 'African earthquake': social and economic upheaval that have also eased the spread of HIV. Epstein is a lucid writer, translating abstruse scientific concepts into language nonspecialists can easily grasp. Provocative, passionate and incisive, this may be the most important book on AIDS published this year—indeed, it may even save lives."—Publishers Weekly

"An enlightening and troubling book."--The New York Times

"Helen Epstein is one of a rare species: the scientist turned storyteller. . . . [A] blunt, informed critique."--Salon.com

"The UN and President Bush should not just read Epstein's book, they should distribute it around Africa."--The Sunday Times (London)

"Elegant prose, a scientific background, and a journalist's searching anecdotal eye."--Nature

"Sometimes a bolt of clarity shoots out of the blue . . . as it will for readers of this book who yearn for insights on how a deadly virus now infects an estimated 25 million Africans and has killed untold millions more."--The New York Times Book Review

"Epstein has a compelling thesis, and she explains it in lucid, sometimes extraordinary prose."--The Nation

A New York Times Notable Book of 2007

The Invisible Cure is an account of Africa's AIDS epidemic from the inside--a revelatory dispatch from the intersection of village life, government intervention, and international aid. Helen Epstein left her job in the US in 1993 to move to Uganda, where she began work on a test vaccine for HIV. Once there, she met patients, doctors, politicians, and aid workers, and began exploring the problem of AIDS in Africa through the lenses of medicine, politics, economics, and sociology. Amid the catastrophic failure to reverse the epidemic, she discovered a village-based solution that could prove more effective than any network of government intervention and international aid, an intuitive response that calls into question many of the fundamental assumptions about the AIDS in Africa.

Written with conviction, knowledge, and insight, The Invisible Cure will change how we think about the worst health crisis of the past century--and indeed about every issue of global public health.

The Invisible Cure is an account of Africa's AIDS epidemic from the inside--a revelatory dispatch from the intersection of village life, government intervention, and international aid. Helen Epstein left her job in the US in 1993 to move to Uganda, where she began work on a test vaccine for HIV. Once there, she met patients, doctors, politicians, and aid workers, and began exploring the problem of AIDS in Africa through the lenses of medicine, politics, economics, and sociology. Amid the catastrophic failure to reverse the epidemic, she discovered a village-based solution that could prove more effective than any network of government intervention and international aid, an intuitive response that calls into question many of the fundamental assumptions about the AIDS in Africa.

Written with conviction, knowledge, and insight, The Invisible Cure will change how we think about the worst health crisis of the past century--and indeed about every issue of global public health. Helen Epstein writes frequently on public health for various publications, including The New York Review of Books and The New York Times Magazine. She is currently a visiting research scholar at the Center for Health and Wellbeing at Princeton University. A New York Times Notable Book of the Year In 1993, Helen Epstein, a scientist working with a biotechnology company searching for an AIDS vaccine, moved to Uganda, where she witnessed firsthand the suffering caused by the epidemic. Now, in her unsparing and illuminating account of this global disease, she describes how international health experts, governments, and ordinary Africans have struggled to understand the rapid and devastating spread of the disease in Africa, and traces the changes wrought by new medical developments and emerging political realities. It is an account of scientific discovery and intrigue with implications far beyond the fight against one tragic disease. The AIDS epidemic is partly a consequence of the rapid transition of African societies from an agrarian past to an impoverished present. Millions of African people have yet to find a place in an increasingly globalized world, and their poverty and social dislocation have generated an earthquake in gender relations that deeply affects the spread of HIV. But Epstein argues that there are solutions to this crisis, and some of the most effective ones may be simpler than many people assume. Written with conviction, knowledge, and insight, The Invisible Cure will change how we think about the worst health crisis of the past century, and our strategies for improving global public health. Reading The Invisible Cure is like traveling into remote and hard-to-comprehend territory with an unblinking and sure-footed guide . . . Epstein] teaches me things I didn't know. Her rigorous reporting unearths new findings among old, worn-out issues. And the evidence she puts forward could provide a roadmap for comprehensive prevention programs that incorporate teaching abstinence, using condoms and, most critically, emphasizing fidelity.--John Donnelly, The New York Times Book Review Amid the partisan babble, Helen Epstein has for years generated some of the most sensible commentary around, posting dispatches from AIDS-afflicted countries in Africa to The New York Review of Books and other publications. As a scientist morphed into a journalist, Dr. Epstein combines an understanding of the biology of AIDS with a coolly impartial view of the political and social landscape of Africa. She has now assembled more than a decade's worth of reporting into an enlightening and troubling book . . . Dr. Epstein makes a good case for the efficacy of a pervasive grass-roots effort, with ordinary people talking openly about AIDS and caring for the sick and orphaned in hundreds of small community initiatives in a 'spirit of collective action and mutual aid' . . . Throughout the book, Dr. Epstein paints an unforgettably nuanced portrait of Western efforts in Africa: well-meaning, vitally necessary and yet often so misguided.--Abigail Zuger, M.D., The New York Times

Reading The Invisible Cure is like traveling into remote and hard-to-comprehend territory with an unblinking and sure-footed guide. After five years in Washington covering the politics of AIDS and three years in Africa writing about the lives of those infected and affected, in truth, I have little patience for books on AIDS in Africa. With few exceptions, they tend to be too self-important, too polemical, too grim or too at odds with my experiences in the field. Epstein, in contrast, teaches me things I didn't know. Her rigorous reporting unearths new findings among old, worn-out issues. And the evidence she puts forward could provide a roadmap for comprehensive prevention programs that incorporate teaching abstinence, using condoms and, most critically, emphasizing fidelity.--John Donnelly, The New York Times Book Review

One of the classic works of journalism of the last couple of decades was Randy Shilts's And the Band Played On, about the sluggish response to AIDS in the 1980s in the United States, which indicted both the Reagan administration and the leaders of the gay community. I still remember the sense of outrage I felt when reading Shilts's book; it struck just the right note, leaving one both horrified about the tragic incompetence of so many and yet also hopeful that someone, somewhere could do things better next time. Yet after reading Helen Epstein's masterful new book, the response to AIDS in America now looks in retrospect like a model of courage, speed, and efficiency by comparison with the response in Africa . . . Epstein's book lays all this out in courageous and thought-provoking detail, describing the maddening complexity of the AIDS crisis in Africa, and the reprehensible and simplistic evasions of nearly everyone involved. It is not only a book that should be requi

Drawing on twenty years of fieldwork in Nigeria, Smith tells a story of dramatic social changes, ones implicated in the same inequalities that also factor into local perceptions about AIDSand#8212;inequalities of gender, generation, and social class. Nigerians, he shows, view both social inequality and the presence of AIDS in moral terms, as kinds of ethical failure. Mixing ethnographies that describe everyday life with pointed analyses of public health interventions, he demonstrates just how powerful these paired anxietiesand#8212;medical and socialand#8212;are, and how the world might better alleviate them through a more sensitive understanding of their relationship.

HELEN EPSTEIN writes frequently on public health for various publications including The New York Review of Books and The New York Times Magazine. She is currently a visiting research scholar at the Center for Health and Wellbeing at Princeton University.

Chapter One. Okada Men, Money, and the Moral Hazards of Urban Inequality

Chapter Two. Gender Inequality, Sexual Morality, and AIDS

Chapter Three. and#147;Come and Receive Your Miracleand#8221;: Pentecostal Christianity and AIDS

Chapter Four. and#147;Feeding Fat on AIDSand#8221;: NGOs, Inequality, and Corruption

Chapter Five. Returning Home to Die: Migration and Kinship in the Era of AIDS

Chapter S. Living with HIV: The Ethical Dilemmas of Building a Normal Life

Conclusion

Acknowledgments

Notes

References

Index