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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, Why Don't They Listen? will change how we think about the worst health crisis of the past century, and our strategies for improving global public health.
|Publisher:||Farrar, Straus and Giroux|
|Edition description:||Older Edition|
|Product dimensions:||6.50(w) x 1.50(h) x 9.50(d)|
Read an Excerpt
The Invisible CureAfrica, the West, and the Fight Against AIDS
By Epstein, Helen
Farrar, Straus and GirouxCopyright © 2007 Epstein, Helen
All right reserved.
One morning in November 2001, two officials from a Kenyan AIDS organization picked me up from my hotel in Nairobi and took me on a drive. We drove and drove all day, over muddy tracks, through endless pineapple and coffee plantations, rural villages and slums, through all of Africa, it seemed, to arrive at a small field, perhaps half an acre, with some weeds growing in it and an old woman standing there with a hoe.I had not expected this. I was reporting on AIDS programs for an American foundation, and most of the other projects I had visited were either medical programs, AIDS awareness campaigns using billboards, radio or television spots, or traveling roadshows designed to promote AIDS awareness or condoms or HIV testing. I was about to say something when one of my guides spoke first.“We are very proud of this project.”So I said nothing. About twenty women had saved up for two years to buy this land. All of them were supporting orphans whose parents had died of AIDS, and they hoped the land would produce enough food for about fifty people in all. On a nearby hill, one of Kenya’s vast corporate-owned coffee plantations loomed like the edge of the sea. The old woman kept glancing at it as though it might sweep her away. I was moved by what I saw, although I didn’t understand at the time how this project was supposed tofight AIDS. This book explains how I came to do so.The worldwide AIDS epidemic is ruining families, villages, businesses, and armies and leaving behind an immense sadness that will linger for generations. The situation in East and southern Africa is uniquely severe. In 2005, roughly 40 percent of all those infected with HIV lived in just eleven countries in this region—home to less than 3 percent of the world’s population.1 In Botswana, Lesotho, South Africa, and Swaziland, roughly a third of adults were infected, a rate ten times higher than anywhere else in the world outside Africa. In other world regions, the AIDS epidemic is largely confined to gay men, intravenous drug users, commercial sex workers, and their sexual partners. But in East and southern Africa, the virus has spread widely in the general population, even among those who have never engaged in what health experts typically consider high-risk behavior and whose spouses have not done so either. Although there were predictions that HIV would soon spread widely in the general population in Asia and eastern Europe, this has yet to occur, even though the virus has been present in those regions for more than two decades. The UN AIDS Program now predicts it probably never will.2Why is the epidemic in East and southern Africa so severe? And why has it been so difficult to control? I started thinking about this in 1993, when I quit a postdoctoral job in molecular biology at the University of California and went to Uganda to work on an AIDS vaccine project. My results, like those of many others, were disappointing.For more than twenty years, scientists have been trying to make such a vaccine, and most experts predict it will take at least another decade.3 The editor of Britain’s prestigious medical journal The Lancet has even suggested that a truly effective AIDS vaccine may be a biological impossibility.4I continued to work on AIDS as a writer and consultant for various development agencies after I left Uganda, and I continued to wonder about what might be done to arrest the epidemic, and whether some other device or program might substitute for a vaccine. In 1996, a combination of three antiretroviral drugs, taken for life, was found to dramatically relieve the symptoms and extend the lives of HIV-positive people. At the time, these drugs were patented and extremely expensive, and for years they were out of reach of the millions of poor African patients who needed them. Before long, a worldwide network of AIDS activists began to pressure pharmaceutical companies to cut the prices of these drugs and urged international donors to raise billions of dollars to fund AIDS treatment programs in developing countries. As a result, hundreds of thousands of Africans with HIV are now receiving treatment.In this book, I do not deal at length with this extraordinary struggle, a story that has been ably covered by other writers, some of whom are activists themselves.5 While the humanitarian urgency of AIDS treatment programs is inarguable, these drugs will not halt the epidemic on their own. They are not a cure, they don’t work for everyone, and they can have severe side effects. In Africa, those most likely to spread the virus to others are often at an early stage of infection and are not in need of treatment. In many cases, their infections may not even be detectable by HIV tests.6 Because Africa’s health-care infrastructure is in such a dire state, treatment programs are expensive and difficult to administer, even when the drugs themselves are practically free. Those who do receive treatment can expect to gain, on average, only an extra four or five years of life because the virus eventually develops resistance, necessitating second- and third-line treatment, presently all but unavailable in Africa.7 It is impossible to put a price on four years of anyone’s life, least of all that of an African mother whose children would otherwise be orphaned, so the international community must endeavor to expand the range of AIDS drugs available in Africa. However, it would be better by far if that mother had never become infected in the first place.8To date, the closest thing to a vaccine to prevent HIV is male circumcision, which was shown in 2006 to reduce the risk of HIV transmission by roughly 50 percent.9 The widespread practice of male circumcision in the predominantly Muslim countries of West Africa may largely explain why the virus is so much less common there than it is along the eastern and southern rim of the continent. It is urgent that as many men as are willing to undergo the procedure have access to cheap, safe circumcision services. But it may take years to develop such services and in the meantime, millions of people will become infected. In any case, HIV infection rates may be quite high, even in West African cities where nearly all men are circumcised.10As international concern about the epidemic has grown, along with foreign-aid budgets for programs to fight it, a global archipelago of governmental and nongovernmental agencies has emerged to channel money, consultants, condoms, and other commodities to AIDS programs all over the world. During the past decade, I have visited dozens of these programs and spoken to hundreds of people. I never found a panacea, but I did learn a great deal. I learned, for example, that AIDS is a social problem as much as it is a medical one; that the virus is of recent origin, but that its spread has been worsened by an explosive combination of historically rooted patterns of sexual behavior, the vicissitudes of postcolonial development, and economic globalization that has left millions of African people adrift in an increasingly unequal world. Their poverty and social dislocation have generated an earthquake in gender relations that has created wide-open channels for the spread of HIV. Most important, I came to understand that when it comes to saving lives, intangible things—the solidarity of ordinary people facing up to a shared calamity; the anger of activists, especially women; and new scientific ideas—can be just as important as medicine and technology.Like many newcomers to Africa, I learned early on that the most successful AIDS projects tended to be conceived and run by Africans themselves or by missionaries and aid workers with long experience in Africa—in other words, by people who really knew the culture. The key to their success resided in something for which the public health field currently has no name or program. It is best described as a sense of solidarity, compassion, and mutual aid that brings people together to solve a common problem that individuals can’t solve on their own. The closest thing to it might be Harvard sociologist Felton Earls’s concept of “collective efficacy,” meaning the capacity of people to come together and help others they are not necessarily related to. Where missionaries and aid workers have, intentionally or not, suppressed this spirit, the results have been disappointing. Where they have built on these qualities, their efforts have often succeeded remarkably well.It’s easy to be pessimistic about Africa. Headlines from the continent chronicle apparently endless war, tyranny, corruption, famine, and natural disaster, along with a few isolated nature reserves and other beauty spots. Certainly there are many war-torn countries in Africa and many poor, sick people who need assistance. But sometimes helplessness is in the eye of the beholder. There is also another Africa, characterized by a striking degree of reciprocity, solidarity, and ingenuity. Time and again, African people have relied on these qualities to save themselves—and at one time, the entire human family—from extinction. Now, faced with the scourge of AIDS, some of them, including the farmer I met in Kenya, are trying to do so again.Most of the black Africans who now live in the region covered in this book are descended from Bantu farmers who began migrating from western Africa several thousand years ago, across the continent and then south.11 On the way, some of them encountered other African population groups—the San and Khoi of southern Africa and the Nilotes of the Sahel, for example—with whom they exchanged aspects of language and culture and with whom they sometimes intermarried. Subgroups splintered off from each other and adapted to local circumstances.Their story is, with some exceptions, not about the accumulation of great personal fortunes and the founding of cities with palaces, cathedrals, and libraries. It is a story of relatively small groups banding together to survive on a harsh and dangerous frontier, of natural disasters and political and economic crises.Survival was not inevitable. The ancient, infertile soils of Africa could not sustain large permanent farming settlements, and the development of towns was further prevented by infectious diseases that spread rapidly as soon as populations reached a certain threshold. When farmers cleared large tracts of land to grow crops, malaria bloomed in the sunlit mud; as herds expanded, the animals succumbed to tuberculosis and sleeping sickness, which spread to their owners.Faced with such a mutable, dangerous world, the people of East and southern Africa developed a genius for local improvisation, adapting to life in forests, deserts, or lakesides. Cut off by the Sahara from the developing technologies of Europe and Asia, they were forced to innovate and developed their own methods of agriculture, iron smelting, and mining. In a world without the apparent consolations of property and bureaucratic institutions, a powerful sense of spirituality provided moral order and solace to the suffering.12 Few groups developed writing, but they relied on drumming, the patterns woven into cloth and beadwork, and their prodigious memories to transmit information and an ever-changing repertoire of stories and myths.On the harsh African frontier, you were nowhere without other people, and this is still the case, even though the crises facing the continent are very different and constantly changing. It is almost impossible to be truly alone in Africa, and this has a profound effect on how people see the world and act in it. In remote villages, the poorest families will invite strangers into their houses and won’t let them leave until they have eaten an enormous meal. Most Africans I know live in households that swarm with a vast and changing cast of inhabitants, including grown offspring, nieces, nephews, poor relations, aged aunts and uncles, and innumerable children. You would need a spreadsheet to establish who is related to whom and how.These societies, wrote the historian Basil Davidson, “enclosed relations between people within a moral framework of intimately binding force. . . . an intense and daily interdependence that we in our day seldom recognize, except in moments of postprandial afflatus or national catastrophe. The good of the individual was a function of the good of the community, not the reverse.”13This sense of solidarity has a downside when it contributes to tribalism and social rigidity, but it can also be a source of power and creativity, and it has been at the heart of the region’s most successful responses to AIDS.What I didn’t know when I was in Uganda in the early 1990s was that something remarkable was happening there. Between 1992 and 1997, the HIV infection rate fell by some 60 percent in the arc of territory along the northern and western shores of Lake Victoria, an area comprising southern Uganda and the remote Kagera region of Tanzania. This success, unique on the continent at the time, saved perhaps a million lives. It was not attributable to a pill or a vaccine or any particular public health program, but to a social movement in which everyone—politicians, preachers, women’s rights activists, local and international health officials, ordinary farmers, and slum dwellers—was extraordinarily pragmatic and candid about the disaster unfolding in their midst. This response was similar to the spontaneous, compassionate, and angry AIDS activism of gay men in Western countries during the 1980s, when HIV incidence in this group also fell steeply.14 Why has such a response been so slow to emerge elsewhere? The complete answer may never be known, but in this book, I suggest that outside of Uganda and Kagera, health officials misunderstood the nature of the AIDS epidemic in this region, in particular why the virus was spreading so rapidly in the general population. As a result, the programs they introduced were less effective than they might have been and may have inadvertently reinforced the stigma, shame, and prejudice surrounding the disease. The AIDS epidemic is finally beginning to subside in many African countries, owing to increasing awareness and commonsense changes in sexual behavior. This is heartening, but it is possible that many lives might have been spared had policymakers better understood the nature of the epidemic early on.Much of this book is concerned with donor-funded AIDS programs that failed in some way, beginning with my own vaccine project. I tell these stories not with a sense of satisfaction. I could not have done better myself at the time. But in science, failures are often as important as successes, because they tell us where the limits are. Only by looking honestly at our mistakes can we hope to overcome them. When it comes to fighting AIDS, our greatest mistake may have been to overlook the fact that, in spite of everything, African people often know best how to solve their own problems. They have been doing so throughout human history. Had they not succeeded, I would not be here to write these words, nor would you be here to read them.Excerpted from The Invisible Cure: Africa, the West, and the Fight Against AIDS by Helen Epstein. Copyright © 2007 by Helen Epstein. Published in May 2007 by Farrar, Straus and Giroux, LLC. All rights reserved.
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