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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.

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Copyright 2007 The New York Times Company
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July 29, 2007
First Chapter

‘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.

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Copyright 2007 The New York Times Company

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