July 29, 2007
The Plague of Nations
By JOHN DONNELLY
THE INVISIBLE CURE
Africa, the West, and the Fight Against AIDS.
By Helen Epstein.
326 pp. Farrar, Straus & Giroux. $26. (First Chapter follows review)
Halfway through “The Invisible Cure,” Helen Epstein writes about finding a long-forgotten document in a small research library in Canada. Reading through the paper, Epstein says, “I felt as though a small stick of dynamite had gone off in my head.” Epstein had unearthed a rare copy of a detailed study on the sexual behavior of Ugandans in the late 1980s and early ’90s, a period that coincided with the country’s historic drop in H.I.V. rates. In short, Epstein knew, the research done by Maxine Ankrah, an African-American academic, would give invaluable insights into what had halted the epidemic — insights that could then be applied to other countries with high rates of H.I.V. and AIDS.
Before Epstein’s discovery, Ankrah’s research seemed destined for oblivion. A United Nations AIDS researcher had read it, failed to understand its significance or to credit it and, Epstein recounts, wrongly concluded that an increase in condom use was responsible for the decrease of the H.I.V. rate in Uganda. In reality, according to three later analyses of Ankrah’s study, the primary reason for the decline was completely different: substantial numbers of Ugandans had ended affairs and remained faithful to one partner.
Uganda has long been a focal point in the contentious world of AIDS policy. But sometimes a bolt of clarity shoots out of the blue, as it did for Epstein when she read Ankrah’s paper — and 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. 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. Indeed, Epstein’s animated consideration of debates on fidelity leaves me to wonder, and not for the first time, about the virtual silence on this issue by most African leaders. (Then again, a ruler like King Mswati III of Swaziland, who has something like 13 wives and whose country has an adult H.I.V. rate of greater than 30 percent, is not about to speak up.)
Epstein began her work in Africa in 1993 as a scientist for a biotechnology company working in Uganda on an AIDS vaccine. She returned often in the ensuing years as a reporter and researcher, writing in-depth articles mainly for The New York Review of Books and The New York Times Magazine, which form the foundation for her book. Epstein often focuses on failures, including her own early search for a vaccine. “In science, failures are often as important as successes, because they tell us where the limits are,” she writes in the preface. “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.” Later, she expands on this theme, criticizing many outsiders who come to Africa to work on AIDS. “Everyone seems to know what Africa needs, but sometimes I think our minds are not really on it,” she writes. “Most of us see only Africa’s contours, and we use them to map out problems of our own. Africa is a career move, an adventure, an experiment. It fades into an idea. We aren’t really looking.”
This isn’t a blanket criticism, as Epstein would not count herself among those blind to the real problems of a varied continent; nor would she say that about several of her foreign researcher heroes quoted in the book. But in Uganda, she found a powerful example of Africans taking the lead in the fight. When scientists first reported the decline in Uganda’s H.I.V. prevalence in 1995, Epstein says, she and others assumed it was because so many Ugandans had died from AIDS, not because they were sleeping around less. What had actually taken place, she writes, was a “very African” prevention approach.
It was led by President Yoweri Museveni’s call for “zero grazing” — meaning couples should stay faithful to each another. This call inspired Ugandans to talk about AIDS more openly, which in turn erased the stigma of the disease to some degree, empowered women to divorce unfaithful husbands and cast shame on those who continued to have affairs. Hence Epstein’s title and theme — “the invisible cure.” Beatrice Were, a brave H.I.V.-positive activist in Uganda, articulates it best: “I am often asked whether there will ever be a cure for H.I.V./AIDS, and my answer is that there is already a cure,” she says. “It lies in the strength of women, families and communities who support and empower each other to break the silence around AIDS and take control of their sexual lives.”
Studies have shown that Africans do not have more sex or more sex partners than people in other parts of the world. But Africans are more likely to have concurrent relationships, studies show — sometimes because various cultures allow men to have several wives or a girlfriend in addition to a wife, and sometimes because the economy forces many men to live for long periods at mines or other workplaces hundreds of miles from home. In these relationships, men seldom use condoms, putting their partners and themselves at greater risk. In contrast, in the United States, heterosexual Americans “tend to have several long-term relationships over a lifetime,” Epstein writes, but “they usually have them sequentially, not concurrently,” and this limits the spread of the virus.
In some areas, Epstein’s book falls short. She devotes little attention to male circumcision as a promising prevention tool; she fails to look critically at Unaids’s estimates of H.I.V. prevalence, which are still almost surely too high in many countries; and she underestimates the impact of donor programs, mentioning that the United States treats “thousands” of Ugandans, but failing to note that its overall effort helps treat more than a million patients in 12 African countries. And she misses an opportunity to evaluate several prevention programs financed by the United States government that encourage men to be faithful. These are not small faults. But they should not detract from the power of this sweeping book.
To track down Maxine Ankrah, the woman who studied Ugandan sexual habits, Epstein traveled to a hilltop in Mukono, Uganda, a small town 30 miles outside Kampala. The two had dinner together. One can imagine the power of the conversation, as Epstein told Ankrah about the fate of her long-lost work. Ankrah had believed her research would be forever forgotten, especially when the United Nations researcher failed to cite her study even in his footnotes. “It was as though I had been written out of history,” Ankrah said. To her credit, Epstein has written her back in. It’s time the world takes note of Ankrah’s research and Epstein’s apt reporting, and shifts the prevention message to spare millions from H.I.V. infection and an early death.
John Donnelly covers global health and environmental issues for The Boston Globe from Washington.
Copyright 2007 The New York Times Company
July 29, 2007
‘The Invisible Cure’
By HELEN EPSTEIN
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 to fight 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. 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.
Why 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. The editor of Britain's prestigious medical journal The Lancet has even suggested that a truly effective AIDS vaccine may be a biological impossibility.
I 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. 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. 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. 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.
To 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. 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.
As 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. 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. 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."
This 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. 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 by Helen Epstein Copyright © 2007 by Helen Epstein. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Copyright 2007 The New York Times Company