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AIDS: The Agony of Africa

November 9, 1999

Penhalonga, Zimbabwe—They didn’t call Arthur Chinaka out of the classroom. The principal and Arthur’s uncle Simon waited until the day’s exams were done before breaking the news: Arthur’s father, his body wracked with pneumonia, had finally died of AIDS. They were worried that Arthur would panic, but at 17 years old, he didn’t. He still had two days of tests, so while his father lay in the morgue, Arthur finished his exams. That happened in 1990. Then in 1992, Arthur’s uncle Edward died of AIDS. In 1994, his uncle Richard died of AIDS. In 1996, his uncle Alex died of AIDS. All of them are buried on the homestead where they grew up and where their parents and Arthur still live, a collection of thatch-roofed huts in the mountains near Mutare, by Zimbabwe’s border with Mozambique. But HIV hasn’t finished with this family. In April, a fourth uncle lay coughing in his hut, and the virus had blinded Arthur’s aunt
Eunice, leaving her so thin and weak she couldn’t walk without help. By September both were dead.


The most horrifying part of this story is that it is not unique. In Uganda, a business executive named Tonny, who asked that his last name not be used, lost two brothers and a sister to AIDS, while his wife lost her brother to the virus. In the rural hills of South Africa’s KwaZulu Natal province, Bonisile Ngema lost her son and daughter-in-law, so she tries to support her granddaughter and her own aged mother by selling potatoes. Her dead son was the breadwinner for the whole extended family, and now she feels like an orphan.


In the morgue of Zimbabwe’s Parirenyatwa Hospital, head mortician Paul Tabvemhiri opens the door to the large cold room that holds cadavers. But it’s impossible to walk in because so many bodies lie on the floor, wrapped in blankets from their deathbeds or dressed in the clothes they died in. Along the walls, corpses are packed two to a shelf. In a second cold-storage area, the shelves are narrower, so Tabvemhiri faces a
grisly choice: He can stack the bodies on top of one another, which squishes the face and makes it hard for relatives to identify the body, or he can leave the cadavers out in the hall, unrefrigerated. He refuses to deform bodies, and so a pair of corpses lie outside on gurneys behind a curtain. The odor of decomposition is faint but clear.


Have they always had to leave bodies in the hall? “No, no, no,” says Tabvemhiri, who has worked in the morgue since 1976. “Only in the last five or six years,” which is when AIDS deaths here took off. Morgue records show that the number of cadavers has almost tripled since the start of Zimbabwe’s epidemic, and there’s been a change in who is dying: “The young ones,” says Tabvemhiri, “are coming in bulk.”


The wide crescent of East and Southern Africa that sweeps down from Mount Kenya and around the Cape of Good Hope is the
hardest-hit AIDS region in the world. Here, the virus is cutting down more and more of Africa’s most energetic and productive people, adults aged 15 to 49. The slave trade also targeted people in their prime, killing or sending into bondage perhaps 25 million people. But that happened over four centuries. Only 17 years have passed since AIDS was first found in Africa, on the shores of Lake Victoria, yet according to the Joint United Nations Programme on HIV/AIDS (UNAIDS), the virus has already killed more than 11 million sub-Saharan Africans. More than 22 million others are infected.


Only 10 percent of the world’s population lives south of the Sahara, but the region is home to two-thirds of the world’s HIV-positive people, and it has suffered more than 80 percent of all AIDS deaths.


Last year, the combined wars in Africa killed 200,000 people. AIDS killed 10 times that number. Indeed, more people succumbed to HIV last year than to any other cause of death on this continent, including malaria. And the carnage has only begun.


Unlike ebola or influenza, AIDS is a slow plague, gestating in individuals for five to 10 years before killing them. Across East and Southern Africa, more than 13 percent of adults are infected with HIV, according to UNAIDS. And in three countries, including Zimbabwe, more than a quarter of adults carry the virus. In some districts, the rates are even higher: In one study, a staggering 59 percent of women attending prenatal clinics in rural Beitbridge, Zimbabwe, tested HIV-positive.


Life expectancy in more than a dozen African countries “will soon be 17 years shorter because of AIDS-47 years instead of 64,” says Callisto Madavo, the World Bank’s vice president for Africa. HIV “is quite literally robbing Africa of a quarter of our lives.”

[


In the West, meanwhile, the HIV death rate has dropped steeply thanks to powerful drug cocktails that keep the disease from progressing. These regimens must be taken for years, probably for life, and they can cost more than $10,000 per patient per year. Yet in many of the hardest-hit African countries, the total per capita health-care budget is less than $10.


Many people-in Africa as well as the West-shrug off this stark disparity, contending that it is also true for other diseases. But it isn’t. Drugs for the world’s major infectious killers-tuberculosis, malaria, and diarrheal diseases- have been subsidized by the international community for years, as have vaccines for childhood illnesses such as polio and measles. But even at discounted prices, the annual cost of putting every African with HIV on triple combination therapy would exceed $150 billion, so the world is letting a leading infectious killer for which treatment exists mow down millions.


That might be more palatable if there were a Marshall Plan for AIDS prevention to slow the virus’s spread. But a recent study by UNAIDS and Harvard shows that in 1997 international donor countries devoted $150 million to AIDS prevention in Africa. That’s less than the cost of the movie Wild Wild West.


Meanwhile, the epidemic is seeping into Central and West Africa. More than a tenth of adults in Côte d’Ivoire are infected. Frightening increases have been documented in Yaoundé and Douala, the largest cities in Cameroon. And in Nigeria-the continent’s most populous country-past military dictatorships let the AIDS control program wither, even while the prevalence of HIV has climbed to almost one in every 20 adults.


Quite simply, AIDS is on track to dwarf every catastrophe in Africa’s recorded history. It is stunting development, threatening the economy, and transforming cultural traditions.

  • Epidemics are never merely biological. Even as HIV changes African society, it spreads by exploiting current cultural and economic conditions. “The epidemic gets real only in a context,” says Elhadj Sy, head of UNAIDS’s East and Southern Africa Team. “In Africa, people wake up in the morning and try to survive-but the way they do that often puts them at risk for infection.” For example, men migrate to cities in search of jobs; away from their wives and families for months on end, they seek sexual release with women who, bereft of property and job skills, are selling their bodies to feed themselves and their children. Back home, wives who ask their husbands to wear condoms risk being accused of sleeping around; in African cultures, it’s usually the man who dictates when and how sex happens.


    Challenging such cultural and economic forces requires political will, but most African governments have been shockingly derelict. Lacking leadership, ordinary Africans have been slow to confront the disease. Few companies, for example, have comprehensive AIDS programs. And many families still refuse to acknowledge that HIV is killing their relatives, preferring to say that the person died of TB or some other opportunistic illness. Doctors often collude in this denial. “Just the other day,” says a high-ranking Zimbabwean physician who spoke on condition of anonymity, “I wrote AIDS on a death certificate and then crossed it out. I thought, ‘I’ll just be stigmatizing this person, because no one else puts AIDS as the cause of death, even when that’s what it is.’ ”


    Why is AIDS worse in sub-Saharan Africa than anywhere else in the world? Partly because of denial; partly because the virus almost certainly originated here, giving it more time to spread; but largely because Africa was weakened by 500 years of slavery and colonialism. Indeed, historians lay much of the blame on colonialism for Africa’s many corrupt and autocratic governments, which hoard resources that could fight the epidemic. Africa, conquered and denigrated, was never allowed to incorporate international innovations on its own terms, as, for example, Japan did.


    This colonial legacy poisons more than politics. Some observers attribute the spread of HIV to polygamy, a tradition in many African cultures. But job migration, urbanization, and social dislocation have created a caricature of traditional polygamy. Men have many partners not through marriage but through prostitution or sugar-daddy arrangements that lack the social glue of the old polygamy.


    Of course, the worst legacy of whites in Africa is poverty, which fuels the epidemic in countless ways. Having a sexually transmitted disease multiplies the chances of spreading and contracting HIV, but few Africans obtain effective treatment because the clinic is too expensive or too far away. Africa’s wealth was either funneled to the West or restricted to white settlers who barred blacks from full participation in the economy. In apartheid South Africa, blacks were either not educated at all or taught only enough to be servants. Now, as the country suffers one of the world’s most explosive AIDS epidemics, illiteracy hampers prevention. Indeed, AIDS itself is rendering Africa still more vulnerable to any future catastrophe, continuing history’s vicious cycle.

    [


    Yet AIDS is not merely a tale of despair. Increasingly, Africans are banding together- usually with meager resources-to care for their sick, raise their orphans, and prevent the virus from claiming more of their loved ones. Their efforts offer hope. For while a crisis of this magnitude can disintegrate society, it can also unify it. “To solve HIV,” says Sy, “you must involve yourself: your attitudes and behavior and beliefs. It touches upon the most fundamental social and cultural things-procreation and death.”


    AIDS is driving a new candor about sex-as well as new efforts to control it, through virginity testing and campaigns that advocate sticking to one partner. And slowly, fitfully, it is also giving women more power. The death toll is scaring women into saying no to sex or insisting on condoms. And as widows proliferate, people are beginning to see the harm in denying them the right to inherit property.


    The epidemic is also transforming kinship networks, which have been the heart of most African cultures. Orphans, for example, have always been enfolded into the extended family. But more than 7 million children in sub-Saharan Africa have lost one or both parents, and the virus is also killing their aunts and uncles, depriving them of foster parents and leaving them to live with often feeble grandparents. In
    response, communities across Africa are volunteering to help orphans through home visits and, incredibly, by sharing the very little they have. Such volunteerism is both a reclaiming of communal traditions and their adaptation into new forms of civil society.


    But even heroic efforts can’t stop the damage that’s already occurred here in the hills where Arthur Chinaka lost his father and uncles. The worst consequence of this epidemic is not the dead, but the living they leave behind.

  • Rusina Kasongo lives a couple of hills over from Chinaka. Like a lot of elderly rural folk who never went to school, Kasongo can’t calculate how old she is, but she can count her losses: Two of her sons, one of her daughters, and all their spouses died of AIDS, and her husband died in an accident. Alone, she is rearing 10 orphaned children.


    “Sometimes the children go out and come home very late,” says Kasongo, “and I’m afraid they’ll end up doing the same thing as Tanyaradzwa.” That’s the daughter who died
    of AIDS; she had married twice, the first time in a shotgun wedding. Now, the eldest orphan, 17-year-old Fortunate, already has a child but not a husband.


    Few people have conducted more research on AIDS orphans than pediatrician Geoff Foster, who founded the Family AIDS Caring Trust (FACT). It was Foster who documented that more than half of Zimbabwe’s orphans are being cared for by grandparents, usually grandmothers who had nursed their own children to the grave. But even this fragile safety net won’t be there for many of the next generation of orphans.


    “Perhaps one-third of children in Zimbabwe will have lost a father or mother-or both-to AIDS,” says Foster. They are more likely to be poor, he explains, more likely to be deprived of education, more likely to be abused or neglected or stigmatized, more likely to be seething with all the needs that make it more likely that a person will have unsafe sex. “But when they get HIV and die, who cares for their children? Nobody, because they’re orphans, so by definition their kids have no grandparents. It’s just like the virus itself. In the body, HIV gets into the defense system and knocks it out. It does that sociologically, too. It gets into the extended family support system and decimates it.”


    Foster’s chilling realization is dawning on other people who work in fields far removed from HIV. This year, South African crime researcher Martin Schönteich published a paper that begins by noting, “In a decade’s time every fourth South African will be aged between 15 and 24. It is at this age group where people’s propensity to commit crime is at its highest. At about the same time there will be a boom in South Africa’s orphan population as the Aids epidemic takes its toll.” While some causes of crime can be curtailed, Schönteich writes,
    “Other causes, such as large numbers of juveniles in the general population, and a high proportion of children brought up without adequate parental supervision, are beyond the control of the state.” His conclusion: “No amount of state spending on the criminal justice system will be able to counter this harsh reality.”

    [


    More AIDS and more crime are among the most dramatic consequences of the orphan explosion. But Nengomasha Willard sees damage that is harder to measure. Willard teaches 11-and 12-year-olds at Saint George’s Primary School, located near the Chinakas and the Kasongos. Fifteen of Willard’s 42 pupils have lost one or both of their parents, but he’s particularly worried about one of his students who lost his father and then, at his mother’s funeral, cried inconsolably. “He doesn’t want to participate,” says Willard. “He just wants to be alone.”


    “I see thousands of children sitting in a corner,” says Foster. “The impact is internalized-it’s depression, being withdrawn.” In Africa, says Foster, the focus on poverty eclipses research into psychological issues, but he has published disturbing evidence of abuse-emotional, physical, and sexual. Meanwhile, the orphan ranks keep swelling. “We’re talking 10 percent who will have lost both parents, maybe 15 percent. Twenty-five percent who will have lost a mother. What does that do to a society, especially an impoverished society?”

  • Among his students, Willard has noticed that some of the orphans come to school without shoes or, in Zimbabwe’s cold winter, without a sweater. Sometimes their stepfamilies put them last on the list, but often it’s because grandmothers can’t scrape together enough money.


    Among economists, there has been a quiet debate over whether HIV will harm the economy. Some think it won’t. With unemployment rates in sub-Saharan Africa between 30 and 70 percent, they reason that there are plenty of people to replenish labor losses. One scenario is that economic growth might slacken, but population growth will also dwindle, so per capita GNP might hold steady or even rise. Then, says Helen Jackson, executive director of the Southern Africa AIDS Information Dissemination Service (SAfAIDS), Africa might face the grotesque irony of “an improvement in some macroeconomic indicators, but the exact opposite at the level of households and human suffering.”


    But evidence is mounting that the economy will suffer. Between 20 and 30 percent of workers in South Africa’s gold mining industry-the mainstay of that country’s economy-are estimated to be HIV-positive, and replacing these workers will cut into the industry’s productivity. In Kenya, a new government report predicts that per capita income could sink by 10 percent over the next five years. In Côte d’Ivoire, a teacher dies every school day.


    Then there are the effects that can’t be quantified. “What does AIDS do for the image of Africa?” asks Tony Barnett, a veteran researcher on the economic impact of AIDS. To lure investors, the continent already has to battle underdevelopment and racism, but now, he says, many people will see Africa as “diseased, sexually diseased. It chimes in with so many stereotypes.”


    Beneath the corporate economy, millions of Africans subsist by cultivating their own small plot of land. When someone in the family comes down with AIDS, the other members have to spend time caring for that person, which means less time cultivating crops. And when death comes, the family loses a crucial worker. Studies have documented that among rural AIDS-stricken families, food production falls, savings dwindle, and children are more likely to be undernourished.


    For Kasongo and her 10 orphans, food is a constant problem, but now it has become even harder. On her way back from the fields, carrying a basket of maize on her head, Kasongo tripped and fell. Her knee is swollen, her back is aching, and cultivating the fields is close to impossible. Here, under the radar of macroeconomic indicators, Kasongo’s ordeal shows how AIDS is devastating Africa.


    This is the context in which one of Africa’s most agonizing debates is taking place: Should doctors administer drugs to pregnant women that sharply reduce the chances that a baby will be born with HIV? So far, the debate has centered on the cost of the drugs, but a new, inexpensive regimen has pushed thornier arguments to the surface.


    The “vaccine for babies,” as it is sometimes called, does not treat the mother and so does nothing to reduce the chances the baby will become an orphan. That’s why Uganda’s Major Rubaramira Ruranga, a well-known activist who is himself infected with HIV, opposes it. “Many children in our countries die of malnutrition, even with both parents,” he argues. “Without parents, it’s almost certain they’ll die.”


    Isn’t it impossible to know the fate of any
    given child and presumptuous to decide it in
    advance? “That’s sentimental,” he snaps. Even Foster, who believes “every child has a right to be born without HIV,” wonders whether the money is best spent on the “technical fix” of giving drugs to the pregnant women. The medicine is only a part of the cost, for women can infect their children during breast feeding, which raises expensive problems such as providing formula and teaching mothers how to use it safely in places where clean water may not exist. Would all that money, Foster wonders, be better spent alleviating the root causes of why women get infected in the first place? “It’s very difficult to stand up and make such an argument because you get portrayed as a beast,” he says. In fact, such arguments testify to how the epidemic is forcing Africans to grapple with impossible choices.

    [

  • Weston Tizora is one of thousands of Africans who are trying to give orphans a decent life. Just 25 years old, Tizora started as a gardener at Saint Augustine’s Mission and threw himself into volunteering in the mission’s AIDS program, called Kubatana, a Shona word meaning “together.” Next year he will take over the program’s leadership from its founder, British nurse Sarah Hinton. Kubatana’s 37 volunteers care for homebound patients, and they help raise orphans by, for example, bringing food to Rusina Kasongo’s brood.


    Just a few steps from Kasongo live Cloud and Joseph Tineti. They’re 14 and 11, respectively, and the oldest person in their home is their 15-year-old brother. They are, in the language of AIDS workers, a child-headed household. Who’s in charge? “No one,” Joseph answers-and it shows. Their one-room shack is strewn with dirty clothes, unwashed dishes, broken chairs. On the table, a roiling mass of ants feasts on pumpkin seeds and some kind of dried leaves.


    The troubles run deeper. Their father, who had divorced their mother before she died, lives in nearby Mutare. Does he bring food? “Yes,” says Joseph, “every week.” It’s not true, Tizora maintains. Kubatana members have even talked with the police in their effort to convince the father to take in his children or at least support them. But the police did not act, explains Tizora, because the father is unemployed and struggling to provide for the family of his second wife. Once a month-sometimes not even that often-he brings small amounts of food, so the orphans depend on donations from Kubatana volunteers.


    But if little Joseph’s version isn’t true, it’s what an orphaned kid would want: a father who at least brings food, stops by frequently, and acts a little like a dad. And his mother: What does Joseph remember of her? The question is too much, and he starts crying.


    Kubatana volunteers are supposed to look after the Tineti orphans, so why is their home so unkempt? There used to be two volunteers in this area, explains Tizora. One has been reassigned to work in the nearby mining village, ravaged by AIDS. The other has been away at her parents’ home for two months, attending to a family funeral and to her own late-stage pregnancy.


    And everyone in these villages has their hands full. Standing in a valley, Tizora points to the hillsides around him and says, “There are orphans in that home, and the one over there, and there by the gum trees. And see where there’s that white house? They’re taking care of orphans there, too.” By the time he finishes, he has pointed out about half of the homesteads. When the Kubatana program started, in 1992, volunteers identified 20 orphans. Now they have registered 3000. In many parts of Africa, notes Jackson of SAfAIDS, “It has actually become the norm to have orphaned children in the household rather than the exception.”


    Foster makes some quick calculations: Given the number of volunteers in the Kubatana program, there’s no way they can care for all their orphans. So when a volunteer gets pregnant, has a family emergency, or gets sick, kids like Cloud and Joseph fall through the cracks. Says Foster: “You can’t lose a quarter of your adult population in 10 years without catastrophic consequences.”


    In his office, Tizora has a wall of photographs showing the original 20 orphans. One is a girl who looks about 12. She lost her parents and then she lost the grandma who was caring for her. At that point, she started refusing to go to school, hiding on the way there. Now, she’s run away and, Tizora says, “we don’t know where she is.”

    Additional articles in this series.



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    Learning From HIV

    Eric Davidson has spent most of his long career studying the genetic “switches” that turn genes on and off. It is laborious, painstaking work, which may be one reason Davidson has become a gruff man who doesn’t suffer fools. When I called him a few years back to ask him about evolutionary genetics, he barked, “Why does The Village Voice want to know about that? When I think of the Voice, I think of a cross between The Daily Mail and The Daily Worker.”

    I burst out laughing, which allowed me to evade answering his question. I didn’t really know why the Voice would be interested in science. Nevertheless, Davidson ended up spending hours responding to my naive, often downright ignorant questions. The more I learned from him and the hundreds of other scientists I’ve interviewed in my five years at the Voice, the more it became clear why an alternative paper that publishes activist journalism should want to know about biology. Quite simply, it is changing everything.

    Most fundamentally, it is changing our perception and definition of ourselves. In the popular press, we have a gene for this and a gene for that. In its crudest form, pop biology defines a human being as a chemical-reaction chamber with no unconscious and no emotion that cannot be calibrated into biochemical balance. That’s why, when someone is acting strangely, people are now apt to joke, “Did you forget your medication?”

    Davidson’s work demolishes one pillar of this notion, the idea that we have a gene for this or that, in some one-to-one correspondence. It’s much more like music. Yes, Mozart and Beethoven used the same notes, but how they arranged them is what matters. Similarly, if genes are turned on at different times, or in the context of different sets of genes, the results can be dramatically different. Humans and chimpanzees, for example, share more than 98 percent of their DNA. The real difference between the species probably lies not in the 2 percent that diverges, but in how the 98 percent that is the same gets orchestrated. As Davidson told me, it’s not what the genes are, but “how the genes are used.”

    So, too, with science itself: How societies use—or misuse—science is what matters. Here in the U.S., biology is becoming synonymous with pharmacology. That’s largely because the pharmaceutical industry—the most profitable industry in America—funds more and more research, and lobbies the government to direct more of its vast research budget to test-tube science that will make it easier to find new drugs, not toward social science that will never lead to a product. Of course, molecular biology has provided near miraculous treatments for ailments as diverse as depression and AIDS. But the idea that biology is only about cells and test tubes obscures the rest of human experience, such as culture and politics. The word biology, after all, comes from the ancient words for life and logic. It is the logic of life.

    What can emerge from looking at biology outside the test tube? A study in the prestigious Archives of General Psychiatry compared the mental health of Mexican immigrants to that of third-generation Mexican Americans. Despite having much less money and access to health care, the recent immigrants had one half the mental-health problems of their richer, more assimilated counterparts. William Vega, the Berkeley researcher who conducted the study, notes that marriage rates and other family ties were stronger among the recent immigrants. “There’s an exchange,” he says. “You get material benefits, but you’re trading off emotional support and nurturance.” Such “affluenza,” as other researchers have dubbed this problem, can be tranquilized by medication but not cured by it.

    I spent most of last year reporting on AIDS in sub-Saharan Africa, where the majority of people survive on less than two dollars a day. Whatever their mental health, their physical health is appalling. The tremendous advances in understanding HIV and in creating treatments are quite simply worthless to most infected Africans. The reason has nothing to do with virololgy or immunology. As the anguished Ugandan doctor Peter Mugyenyi put it to me, “The medicines are where the problem is not, and the problem is where the medicines are not. The reason this cannot be put right is economics.”

    And politics. Many African doctors do not tell their HIV patients that AIDS drugs exist, fearing that it would amount to psychological torture. But activists rightly condemn such paternalism. After all, if people don’t even know that treatment exists, they will not fight for it. More than perhaps anything in recent memory, the expensive AIDS drugs have spotlighted the horrendous inequities between the first and third worlds. The more people realize that they are dying as much from a lack of money to buy drugs as from HIV itself, the greater the chance that outrage will swell into a political movement that just might narrow, at least a little, the gap between rich and poor.

    And so we come full circle. We need politics to make drugs available, but we need drugs to drive the politics. This, Professor Davidson, is why the Voice wants to know about science: It wants to know what is actual, what is possible, and what we can dare to hope for.

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    Turning Point

    DURBAN, SOUTH AFRICA—Esther Guzha’s dilemma springs from being one of the lucky ones. Two years ago, AIDS almost killed this Zimbabwean woman, wasting her down to a skeletal 80 pounds and leaving her prey to fungal infection of the brain. She was saved by medication that she could never afford but which she gets from the African AIDS Network, a small organization in San Francisco founded by Lee Wildes, a white gay man who sports tattoos and a silver thumb ring. Like Guzha, he has HIV and knows the grief of the plague. “By the time I was 27,” says Wildes, a nurse who has worked in AIDS hospices, “I had been at the deathbed of 100 men.” By collecting drugs that would otherwise be thrown out, Wildes’s four-year-old program now supports 85 African patients.

    Guzha works as an AIDS counselor at the Centre, a Zimbabwean organization that serves 2000 people with HIV. When they get sick, doctors frequently write prescriptions for medicine priced out of their reach, so they come to Guzha for advice. That’s when her luck becomes excruciating. “I have the drug at home that could help this person,” she explains, “but if I give it to him, then what would I do?”

    Guzha’s dilemma dominated the huge XIII International AIDS Conference held last week in Durban, South Africa. Past world AIDS conferences have been defined by scientific news, such as the success or failure of new drugs. While such findings certainly emerged at this meeting, attended by more than 12,400 delegates from around the world, speaker after speaker rose to decry what South African judge Edwin Cameron called “the shocking, monstrous, and intolerable” fact that more than 90 percent of the world’s people with HIV cannot afford the drugs that have driven down AIDS death rates in rich nations.

    Cameron, who just finished a term on South Africa’s equivalent of the U.S. Supreme Court, is openly HIV-positive and is taking a drug cocktail that has restored his health. “My presence here embodies the injustices of AIDS in Africa,” Cameron told a rapt plenary audience, which gave him a standing ovation. “I am here because I can afford to pay for life itself.” He concluded, “Those of us who live affluent lives, well attended with medical care and treatment, should not ask how Germans or white South Africans could tolerate living in proximity to moral evil. We do so ourselves today, in proximity to the impending illness and death of many millions of people with AIDS.”

    As the statistics continue to swell—more than 10 percent of adults in 16 sub-Saharan nations are infected, and more than 12 million children have been orphaned—the clamor for treatment has become too loud to ignore. And so this conference marked a sharp shift. Before, developing countries rarely emphasized treating AIDS patients, preferring to focus on the much cheaper task of preventing new infections. But now, says Sophia Mukasa-Monicao, head of the AIDS Support Organization of Uganda, “They want the drugs.”

    The resolve among conference delegates to help them get the drugs was extraordinary. Even South African president Thabo Mbeki’s much derided opening speech galvanized delegates. True, Mbeki missed a golden opportunity to lead his nation and continent into action and instead prolonged the pointless debate over whether HIV causes AIDS. But his very lack of leadership drove home the fact that AIDS workers will have to lead from the grass roots, just as they did in the United States under Ronald Reagan, who did not publicly mention the word AIDS until years into the epidemic.

    South Africa’s director general for health, Ayanda Ntsaluba, acknowledged the importance of activist pressure. “There is always a natural tendency in government to be complacent,” he said, “especially in a situation like ours, where we have such a big majority.” The African National Congress controls about two-thirds of South Africa’s parliament, and many other developing nations are also dominated by a single party.

    But it turned out that ordinary AIDS workers had a powerful ally, Nelson Mandela. “Let us not equivocate,” Mandela stated at the conference’s closing ceremony. “AIDS today in Africa is claiming more lives than the sum total of all wars, famines, and floods, and the ravages of such deadly diseases as malaria.” He called, diplomatically yet firmly, for an end to the “distracting” debate and for getting on with “what works.” Mandela’s speech, said the conference’s scientific chair, Salim Abdool Karim, expressed “the leadership and political will I have been yearning for in this epidemic. I was moved to tears.”


    Two years ago, the world AIDS conference in Geneva was also filled with rhetoric lamenting the gap between rich and poor. But this year’s conference was marked by unprecedented global action that ranged from the small efforts of people like Wildes to new initiatives launched by governments and pharmaceutical companies. For example:


    • The World Bank announced a new $500 million loan program targeting AIDS.
    • The Bill and Melinda Gates Foundation and pharmaceutical giant Merck each pledged $50 million to create a soup-to-nuts AIDS program in Botswana, which has the highest estimated HIV prevalence in the world. More than a third of adults in that country carry the virus.
    • French president Jacques Chirac, through a statement read at the conference by his health minister, proposed an international summit devoted to drug access.
    • The Treatment Action Campaign, a South African group modeled on ACT UP, started the conference with a fiery rally and march demanding access to drugs. It ended the conference by announcing a “defiance campaign” to smuggle in fluconazole from India, where a company manufactures a generic version that costs about one-seventh what Pfizer charges for its patented version in South Africa.
    • The International AIDS Vaccine Initiative proposed major reforms so that once an HIV vaccine is developed it would be made available simultaneously in the first and third worlds.
    • The German pharmaceutical company Boehringher Ingelheim promised to provide its drug nevirapine free of charge for five years to prevent mother-to-child transmission of HIV. Just two doses of the drug, one given to the mother during labor, the other given to the newborn, halves the chance of passing on the virus.

    [

    Even collectively, these initiatives do not come close to providing worldwide access to care. The United Nations AIDS program, UNAIDS, estimates that Africa alone requires $3 billion a year just to conduct prevention programs and provide basic care, such as antibiotics. On the eve of the conference, UNAIDS director Peter Piot said that less than a tenth of that amount—”peanuts”—was actually being spent.

    What’s more, any new commitment will have to last for the long haul, because “we are still not at the midpoint of this epidemic,” researcher Roy Anderson declared in a major scientific address. In contrast to viruses such as influenza, which spreads rapidly through populations, HIV spreads slowly. So, Anderson said, the pandemic “must be measured in decades.”

    As the virus spreads, it also mutates and evolves. Through a process called recombination, different strains of HIV, called subtypes, can shuffle their genes to form new, hybrid strains. Francine McCutchan, an expert on HIV’s diversity, revealed that a new variant has been found that mixes five separate subtypes of HIV. This mosaic virus was first found in Senegal, but it has also infected an American soldier who apparently contracted it in Germany—proof, said McCutchan, of “how foreign travel can bring in new strains and expand the repertoire” of HIV.

    Still, by the end of the conference, an energized Piot declared that Durban had marked “a turning point” largely because of the spirit of the participants and the flurry of new initiatives. Two of those initiatives—one aimed at driving down the price of medicine, the other a grassroots effort designed to keep AIDS activists alive and fighting—epitomize the actions taken at the conference. They also reveal the daunting task of bringing treatment to the third world.


    Brazil has been the pioneer. Pushed by a robust activist movement and fortunate to have less than 1 percent of adults infected with HIV, Brazil has committed to providing anti-AIDS drugs, called anti-retrovirals, for all who need them. In practice, many of the country’s HIV-infected people do not get the drugs, but nevertheless, Brazil’s HIV death rate has been cut in half since the program began four years ago, and hospital admissions for AIDS patients have fallen by 80 percent.

    What happened to the price of the drugs is equally striking. Even though Brazil is wealthy compared to many sub-Saharan nations, the cost of the medications was nearly back-breaking. So Brazil started making generic versions of several HIV drugs in its own government laboratories. For those drugs with no competition from government-produced generics, the price over the last four years edged down by less than 10 percent. But for drugs that the government makes, the price tumbled by more than 70 percent.

    Competition appears to get better results than negotiation. For example, UNAIDS bargained with the major pharmaceutical companies and received special discount prices for a pilot program in Uganda. But Brazil’s generics cost less. For example, one day’s supply of the anti-HIV drug stavudine, made by Bristol-Myers Squibb, costs $6.20 in Uganda, almost three dollars off the U.S. price. But in Brazil, where the drug is made by the government, the same dose costs just 56 cents. No wonder Ugandan doctor Peter Mugyenyi, whose clinic is the main site for the UNAIDS program, is fed up with what he calls “this nice-boy negotiating.”

    Paulo Teixeira, director of Brazil’s national AIDS program, came to Durban bearing a message from his government. “We are not able to be the drug supplier for Africa,” Teixeira explained, but Brazil has offered to share everything it has learned, from negotiating for lower prices to setting up pharmaceutical assembly lines. “We’re keen on this partnership,” says Ntsaluba, the South African director general of health, adding that a team from his country will be heading to Brazil “very soon.”

    [

    South Africa cannot adopt Brazil’s model tomorrow. For one thing, it has about eight times as many people with HIV—4.2 million—which would require drug manufacturing on an enormous scale. For another, Brazil was able to make generics legally because it had not yet entered into a World Trade Organization agreement that restricts making knockoffs of patented goods. “It might seem heroic to produce generic drugs,” says South Africa’s Ntsaluba, “but if the rest of the world put us on trade sanctions, then everyone in South Africa would suffer.”

    But both South Africa and Brazil, which recently signed the WTO agreement, are considering exploiting a loophole that allows for generic production in the case of national emergencies. Teixeira says his government is currently negotiating the price of two drugs and will go ahead and produce them “if we don’t get good terms on the original products.” This is the real power of generic manufacturing: It is the trump card in what Teixeira calls “an international movement to push the price of medicine down.” Already, India and Thailand manufacture generic AIDS drugs.

    That threat, as well as the sheer humanitarian urgency, is pressing drug companies toward “differential pricing”—charging high amounts in the first world in order to recoup the research and development costs, while charging low prices in developing nations. Carl-Heinz Pommer, an executive with Boehringher Ingelheim, told the Voice, “There is a real feeling that differential pricing is the way to go.” The strongest move in that direction has come from Glaxo Wellcome, which has offered to chop off 80 percent of the American price for one of the mainstays of AIDS treatment, a pill called Combivir.

    But when Glaxo announced that price cut in May, Jeffrey Sturchio of rival company Merck remembers that “Congressman Jim McDermott was on CNN, rattling his saber and saying, ‘If you can lower prices over there, why not right here in the U.S.?’ ” Such pressure, which threatens the very heart of the pharmaceutical market, scares the drug companies.

    Of course, Western activist groups, such as ACT UP, frequently push for lower drug prices in America and Europe. “With friends like these,” quips Bernard Hirschel, the scientist who chaired the previous world AIDS conference in Geneva, “developing countries don’t need enemies.” For global access to medicine, he says, the new deal is simple: Rich countries must “pay more so that others may pay less.”

    If the industrialized nations accept differential pricing, Joseph Perriens of UNAIDS says, the cost of the AIDS cocktail could tumble from its current discount price of $7000 a year to $2000. What’s more, a new and cheap test would allow doctors to monitor the effect of the drugs on the immune system much more easily. He predicts that the combination of such advances and price cuts will allow AIDS treatments to spread from big hospitals in capital cities out “to the district level.” He says, “I thought for a long time that antiretrovirals for developing countries would not be possible. But now I think there really is something in it.”


    AIDS counselor Jesús Agüais remembers the woman who somehow found her way from Latin America into his office in New York City. “She had sold all her property to come to the U.S., and what she wanted was medicine for her son and daughter, who were dying from AIDS. I had some drugs in my drawer, and when I put them in her hand it was as if she had seen God. Right then I knew I had to do it on a larger scale.”

    Agüais, who calls ACT UP “my kindergarten,” founded an organization called Aid for AIDS. Like Lee Wildes’s group in San Francisco, it sends drugs to people with HIV in poor countries. Now, many such programs have joined under the umbrella of the newly formed AIDS Empowerment and Treatment International. It has a clear goal: to keep AIDS activists alive. “If they don’t stay alive,” says Agüais, “who will make the changes?”

    One activist sustained by drugs from Agüais is Jose Fernando Sanchez Romero. Working in the Peruvian port city of El Callao, which has the highest rate of HIV in that South American country, Romero runs a support group for infected sex workers and another for HIV-positive mothers. He has also convinced two banks to fund all school expenses, from books to uniforms, for children with HIV.

    [

    But those programs might never have been born. Three years ago, Romero had tuberculosis, pneumocystis pneumonia, and a fungal infection called thrush in his mouth and esophagus. This combination of diseases signals end-stage AIDS; without treatment patients usually die quickly. But on the Internet, Romero found Aid for AIDS, and his latest project has been to help launch Peru’s first national network of people with HIV.

    Such groups are crucial, because for the most part, governments in developing countries have not done nearly enough to fight AIDS. Many countries impose tariffs on medicine, adding to their cost. Most countries, even the hardest hit, devote only a tiny sliver of their budget to AIDS—almost never more than one percent. Yet medical infrastructure, from trained staff to basic laboratory equipment, is often lacking. “We need more beds,” says Kenyan doctor Christopher Ouma, who works with the Nobel Prize-winning group Médecins Sans Frontières. He says that patients sleep two or even three to a bed in his Nairobi hospital, and that drug shortages are common. “If my patients were able to get food, that would be a major improvement.”

    At the moment, though, the lion’s share of attention is on the most expensive drugs, the antiretrovirals that attack HIV directly. But most Africans survive on less than two dollars a day, and they lack even basic care. For example, an antibiotic called cotrimoxazole prevents a variety of diseases, including pneumonia and malaria, and last year UNAIDS recommended its use in developing countries. But even though the drug is cheap, only a handful of poor people get it. Meanwhile, in Uganda, researchers are about to test an even more basic way to prevent opportunistic infections: providing chlorine tablets and special jugs to ensure clean water.

    But before such tangible changes can be made, there needs to be a change in the mind. “We prefer not to tell patients the drugs exist,” says Ouma, because doing so would be a “cruel joke.” Even Guzha, who is taking the drugs Wildes sends her, agonizes over whether to tell her clients about antiretrovirals. “They start thinking they can’t get better without them,” she says, “and so they lose hope and don’t do the things they could do.”


    That’s “paternalism in the worst sense,” charges Zackie Achmat, a founder of South Africa’s Treatment Action Campaign. “You know something and you’re taking out of that person’s hands their own despair or hope.” Learning the facts, he says, might stir “outrage and action.”

    There is no harder way to learn anything than the way Sabina Khoza from South Africa found out she was infected. Her baby boy had diarrhea and TB, so the doctors tested him for HIV. He died a week later, the very day his test came back positive.

    Her son’s infection meant she also had the virus, but “I didn’t tell anyone about the disease, not even my boyfriend,” she says. When she finally told her mother, word spread and her brothers kicked her out. “They said I must take my clothes and go, because I might infect them,” she recalls.

    That was five years ago. Last week, Khoza was not only at the conference, she marched in the demonstration for drug access, wearing one of the T-shirts emblazoned with the block letters HIV-POSITIVE. What transformed her was meeting other infected people, who taught her that there is treatment. She takes vitamins, an herbal immune booster, and has managed to get into a clinical trial for antiretrovirals.

    In her township, near the South African capital, Pretoria, 20 women have formed a support group. “Most are sick,” Khosa says. “Some are full-blown sick. They must give us medicine!”*

    Categories
    Living NEWS & POLITICS ARCHIVES NYC ARCHIVES THE FRONT ARCHIVES

    Apathy, Lack of Funds Imperil AIDS Prevention

    VILLAGEVOICE.COM EXCLUSIVE

    DURBAN, SOUTH AFRICA—With passion rare for a scientific meeting, the head of the AIDS program for the Centers for Disease Control warned of “unacceptably high” rates of new HIV infections in the United States and said that efforts to control the epidemic were hampered by apathy and inadequate funding.

    Speaking at a press conference on the eve of the XIII International AIDS Conference, which opened here on Sunday, Helene Gayle contrasted efforts in the United States with those in Africa, where public health officials struggle to wring the most out of the little they have. America, said Gayle, knows how to control the epidemic, but noting that prevention efforts receive only one-tenth the funding given to treating AIDS, she said, “Our failure to invest adequately is totally unacceptable.”

    Gayle also revealed “worrisome” data showing that the decline in AIDS death rates had stabilized, and that there was a slight rise in new cases of full-blown AIDS. Researchers have been worried whether deaths will begin to rise as viral resistance renders anti-HIV drugs less effective.

    The fact that there is no cure for AIDS, and that the drugs are costly and cause severe side effects, makes it crucial to prevent people from contracting the virus. CDC researchers reviewed 83 studies from 1978 through 1998. They found that as soon as prevention education began in the early 1980s, the rate of new HIV infections plummeted and that it has remained relatively stable, at about 40,000 new infections a year.

    But that relatively small total number masks the impact on specific groups, such as gay men and African Americans. In a seven-city study published today in the Journal of the American Medical Association (JAMA), CDC researchers found that 7 percent of gay men aged 15 to 22 were infected with HIV. Among African Americans, the rate was fully twice that: 14 percent.

    “Optimism about treatment has led to complacency,” Gayle said, and “that could
    signal a real resurgence in HIV among gay men.” Indeed, another multi-city study, which looked at HIV-positive gay men from 1993 to 1998, found that
    their rates of gonorrhea had doubled—a strong indicator that these infected men were having unsafe sex, and so possibly spreading HIV. A recent highly publicized study from San Francisco found that the number of new infections, which had been holding steady for six years, rose sharply from 1997 to 1999.

    “We simply cannot allow each generation of gay men to suffer HIV infection as a rite of passage,” said Gayle.

    Among injection-drug users, the rate of new infections seems to be holding steady, but a full fifth of drug users do not have access to clean
    needles. Congress and the president have banned federal funding of needle exchange programs, despite clear evidence that they reduce HIV transmission.
    Thirty percent of new HIV infections are attributed to heterosexual contact but, Gayle noted, many heterosexuals who have gotten infected believed that they were not at risk. “People interpret low risk as no risk,” she said. Overall, the CDC estimates that between 4 million and 5 million Americans are at high risk for acquiring HIV.

    Asked if there was enough money for prevention, Gayle answered, “In a word, no.” She argued that the United States needed to appropriate new money, saying, “It scares me that we’re still playing a game of not increasing the pie, but rather continuing to rob Peter to pay Paul.”

    Gayle was also questioned about two Americans who were infected through the blood supply. There has always been a “window period” after a person gets
    infected before he produces antibodies to HIV. To eliminate this risk, blood banks screen blood by using both an antibody test and one that looks for the virus
    itself. But in the case of the two infected people—reported in today’s Journal of the American Medical Association—the original donor had so little HIV in his blood that it didn’t register.

    Does this suggest the potential for a larger problem? Studies consistently show that the American blood supply “is very, very, very safe,” Gayle replied, adding, “We have zero tolerance around blood and so much tolerance around ways most people are actually getting infected.” Referring to transmission through
    sex and needles, she said, “The levels of infection we continue to allow are unacceptable.”




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    Lost Opportunity

    VILLAGEVOICE.COM EXCLUSIVE

    DURBAN, SOUTH AFRICA, JULY 9—South African president Thabo Mbeki fumbled a prime opportunity tonight to galvanize his country against its greatest threat. HIV has infected almost a fifth of the adult population here. Yet, in an eagerly awaited speech opening the XIII International AIDS Conference tonight and televised live to his nation, Mbeki offered no new proposals to fight the epidemic, sidestepped the question of what causes AIDS, and defended his decision to convene a panel of experts including so-called “AIDS dissidents,” some of whom deny the very existence of the epidemic in Africa.

    Mbeki’s speech followed a spirited march of about 2000 people, mostly Africans, demanding access to AIDS medication. The march was led by Nelson Mandela’s former wife Winnie Madikizela-Mandela, as well as religious leaders, labor union officials, doctors, and AIDS activists. Mbeki, however, made no reference to their march—believed to be by far the largest AIDS demonstration ever in Africa—nor did he offer any proposals on how to make the medicines that have slashed AIDS death rates in rich countries available to the 4.2 million South Africans estimated to be infected with HIV. Instead, he spent much of his talk quoting from a five-year-old World Health Organization document calling poverty the greatest cause of ill health and human suffering, and ended with a terse summary of his government’s current AIDS efforts.

    “He said nothing,” complained Lucky Mazibuko, an openly HIV-positive columnist for the Sowetan newspaper who participated in the march for medicine. “All he did was to try to justify his reasons for calling the panel of experts to raise the issue of whether HIV causes AIDS. He should have said what the plans are for people with HIV.” Mbeki also made no direct appeal to ordinary South Africans to engage in the fight against AIDS.

    “What is he doing in South Africa to make a difference?” asked Florence Ngobeni, who lost her baby to AIDS and now counsels other HIV-positive people. She said she was so angry that she stood up during the president’s speech and tried to interrupt him.

    Doctors and scientists were more reserved. Asked what he thought of Mbeki’s
    remarks, Dr. Salim Abdool-Karim, scientific co-chair of the International AIDS Conference, replied only, “I’m thinking about it.”

    “Yes, poverty is part of the story,” said Peter Piot, director of the Joint United Nations Programme on HIV/AIDS, UNAIDS. “But I won’t comment further.” Privately, others said they were appalled, with several saying that the 11-year-old Nkosi Johnson—who told the audience how his mother died of AIDS and that he is infected—gave a better speech than the South African president.

    But at least one scientist, South African Medical Research Council president Malegapuru Makgoba, called Mbeki’s speech “excellent.” Makgoba added, “He talked of an HIV/AIDS epidemic, linking the two without having to say it.”

    In his speech—delivered in an outdoor stadium at a lavishly produced ceremony worthy of Disney—Mbeki declared poverty “the biggest killer” and listed many of the illnesses that plague Africa, from tuberculosis to river blindness. Such problems, he said, made him come “to the conclusion that as Africans we are confronted by a health crisis of enormous proportions.

    “One of the consequences of this crisis is the deeply disturbing phenomenon of the collapse of immune systems among millions of our people, such that their bodies have no natural defense against attack by many viruses and bacteria.” He added, “As I listened and heard the whole story told about our own country, it seemed to me that we could not blame everything on a single virus.”

    The ambiguity of Mbeki’s statements left him room to continue to insist that he has never denied HIV causes AIDS while at the same time not endorsing any view. He said that he “looked forward” to studies that members his controversial panel would conduct, including one designed to verify the accuracy of HIV antibody tests, which are used to estimate the extent of the epidemic. Mbeki expects the results of that work at the end of the year, by which time, if infection rates remain unchanged, more than a quarter million more South Africans will have acquired the virus.

    Yet Mbeki insisted, “There is no substance to the allegation that there is any hesitation on the part of our government to confront the challenge of HIV/AIDS.” He said that “we will intensify our own campaign against AIDS,” but only listed, in bullet-point form, six items from the current health program, ranging from promoting safe sex to research on anti-HIV drugs.

    That list did not include trying to reduce HIV transmission from mother to child. That has been one of the greatest advances in AIDS medicine, but Mbeki ignited controversy last year when he delayed implementing it, raising questions about whether the drugs are too toxic. Such concerns are in line with those of the AIDS dissidents, who argue that AIDS drugs actually cause diseases attributed to HIV. Recently, the health minister has backed off questioning side effects and focused on cost.

    Earlier in the day, Winnie Madikizela-Mandela gave a fiery speech at a rally before the march calling for cheaper drug prices. After rousing the crowd with anti-apartheid chants and songs, Madikizela-Mandela said, “If we could struggle against AIDS with the same commitment as we did against apartheid, we could turn the tide.” She lambasted drug companies for profiteering, and railed against the South African government for acquiescing to “the tyranny of the market” by not breaking pharmaceutical patents. AIDS, she said, “is a social holocaust. We cannot declare this the African Century and continue to ignore this pandemic, as some African leaders have been doing.”

    At the end of the march, South African health minister Manto Tshabalala-Msimang vowed to “fight tooth and nail” for better access to medicines. “We can collectively in Africa manufacture these drugs,” she said, adding that her government is considering granting local companies license to produce generic versions of anti-HIV drugs. Drug companies oppose such “compulsory licensing” because it breaks their patents.

    Meanwhile, African physicians told horrific tales of trying to treat patients with no money. Christopher Ouma, a doctor who works with the Nobel Prize–winning group Médecins Sans Frontières in Nairobi, said that AIDS has flooded hospitals: “Patients share beds almost all the time, up to three in a bed,” he said. As for the expensive anti-HIV drugs, “We prefer not to tell patients they exist,” he said. “It’s a cruel joke. They cost $10,000 a year, but the patient makes only $300.”

    The march, which was punctuated by Zulu dances, brought ordinary people into the streets. Many were carrying pre-printed placards with the bloody handprint ACT UP made famous in America. But many other signs were handpainted, such as one that read simply, “MBEKI PLEASE HELP US.” Monica Ishmael, a shop steward in the South African Clothing and Textile Union, was marching because “our workers get sick and we don’t know where to tell them to get treatment.” She added, “Just this morning one of my workers passed away.” The woman who died was only 23 years old.




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    Proof Positive

    BITOKE BISALILE, UGANDA—It had to be witchcraft. For more than a year, Matia Katongole just kept getting thinner. His stepmother remembers his feet: As the bones showed through ever more sharply, they seemed to elongate.

    Matia’s family decided, with rising terror, that the hex had come from Tan-zania. Matia was a trader in beans, rope, pots, and anything else he thought might turn a profit, and he conducted much of his business with Tanzanians across the nearby border. Matia had once bought some goods on credit but failed to fully pay back the loan. Now, he was too weak to make amends and lift the curse, so his father sent one of Matia’s busi-ness partners back across the border with a goat, copious quantities of local banana wine, and 80,000 shillings—far more than the original goods had been worth.

    It didn’t work. Less than a month later, Matia’s father was holding his son, trying to give him a little tea. “Matia vomited,” his father recalls, “and died in my lap.”

    That was 1980, before villagers here in Uganda’s Rakai District had seen enough patients like Matia to coin their own term for the new disease, Slim, and before enough trickled into clinics for medical authorities to suspect that they had an epidemic on their hands. Not until five years after Matia’s death was Slim proven to be AIDS. This week, after an estimated 14 million Africans have followed Matia’s fate, the first World AIDS Conference ever held on African soil opens, bringing about 10,000 doctors, researchers, and activists to Durban, South Africa.

    Past World AIDS Conferences have often slighted the contributions of African science. At the last one, held two years ago in Geneva, the editor of the British medical journal The Lancet noted that whenever third-world speakers rose to present their findings, “seats emptied and the hall began to bleed delegates.” But this conference, chaired by South African doctors, offers a chance to showcase research conducted on the continent where HIV almost certainly originated and where the epidemic is far worse than anywhere else.

    But earlier this year, African science got snubbed by a most unlikely source: South African president Thabo Mbeki. Apparently after surfing the Web, Mbeki resurrected the notions of a small group of self-styled “AIDS dissidents,” the most prominent of whom is University of California virologist Peter Duesberg. These AIDS deniers—who have conducted almost no original scientific AIDS research, let alone on the African continent—argue that HIV does not cause AIDS and that the disease does not exist at all in Africa. The estimated 12 million African children orphaned by AIDS have simply lost their parents to the old, endemic diseases of poverty and inadequate sanitation. The full quarter of the adult population thought to be infected with HIV in some African countries carry only a harmless “passenger virus.”

    Mbeki recently convened a scientific panel split almost evenly between mainstream researchers and people who espouse such fringe views, catapulting their notions to center stage. Mainstream scientists—at first reluctant to believe that anyone could fall for a theory with hardly more scientific support than Matia’s ideas of witchcraft—are now circulating a sign-on statement declaring that HIV causes AIDS. The prestigious journal Nature plans to publish it.

    Mbeki—who along with Nelson Mandela is scheduled to speak at the World AIDS Conference—has seemingly backpedaled. Yet there is no doubt that he seriously entertained the denialist ideas. His office solicited the advice of Duesberg colleague David Rasnick, who responded with a letter coauthored by Charles Geshekter, a professor of African history at California State University, Chico, who often takes the lead in arguing that AIDS in Africa doesn’t exist. After their surreal letter to Mbeki was made public, inciting a storm of criticism, the South African president penned his own letter to Bill Clinton, comparing the AIDS deniers to antiapartheid activists and medieval heretics burnt at the stake. U.S. diplomats were reportedly so shocked they checked to make sure the letter wasn’t a hoax.

    What makes this all so extraordinary is that Mbeki—who constantly speaks of leading an “African renaissance” in economics, culture, and science, and who says he consulted the dissidents to help avert a “superimposition of Western experience on African reality”—apparently chose to slight African science in his search for an African solution. Instead, he gave disproportionate credence to a group of mostly Western theorists who seem especially ignorant—indeed, almost contemptuous—of science conducted in Africa and the clinical experience of African physicians.

    Yet African research has provided crucial information to the world’s understanding of AIDS, proving, for example, that HIV is not spread by mosquitoes. And now, as the astronomical cost of medication is finally becoming a headline issue, African science is showing that the drugs work every bit as well in African patients as they do in Westerners.

    [

    In Uganda, many of the scientists who helped discover the epidemic are still studying it. Their story epitomizes the research of a continent.

    David Serwadda’s first inkling was the four patients with Kaposi’s sarcoma. That cancer, called KS, is endemic in Uganda, but largely confined to older men who usually get easily treatable lesions on their arms and legs. From late 1983 through ’84, when Serwadda was doing his residency in Kampala’s Mulago Hospital, four patients—all younger than 45, all from Uganda’s rural Rakai District—presented with an unusual form of the cancer that raged throughout the body. One 26-year-old woman originally came in with the lesions on her head and torso, which was unusual enough. But an autopsy revealed that the cancer had invaded her tonsils, stomach, liver, spleen, heart, and lungs.

    In Zambia, a no-nonsense cancer surgeon named Anne Bayley had also seen this new type of KS—13 patients in 1983, eight of whom were dead by the end of that year. She was virtually certain it was related to the new disease that was killing American gay men, many of whom had aggressive KS, so she started alerting colleagues. Serwadda, too, had read about the new disease among homosexuals, and he wrote Bayley about the KS patients he was seeing. But Serwadda wasn’t convinced they had AIDS: “I was thinking, ‘The disease is here already? Even in black heterosexual women?’ ”

    The chance to find out came in 1984, when the antibody test was developed for HIV, then called HTLV-III. For best results, blood samples had to be fresh, so Serwadda got up before dawn, drew blood and biopsies, and sent them off to London with a passenger who took them as carry-on. But because of a postal error, Serwadda wouldn’t learn the results for several months.

    In the meantime, he was transferred to the medical ward, where he encountered patients wasting away with intractable diarrhea. Many of these patients had a distinctive skin rash or oral thrush, a rare fungal infection that signals immune suppression. “You would ask these patients where they were from,” he recalls, “and it was always Rakai, Rakai, Rakai District. That was very strange.”

    What ultimately distinguished the new cases is that they wouldn’t heal. Desperate, the doctors tried treating their patients for TB, or typhoid, or malaria, but patients with Slim would not get better, or would only improve for a short time before succumbing to relentless new infections.

    In their letter to Mbeki, Rasnick and Geshekter wrote, “It is nearly impossible to distinguish the common symptoms attributable to HIV disease or AIDS from those of malaria, tuberculosis, or malnutrition.” The speck of truth in this statement is that HIV does not itself cause the illnesses that ultimately kill AIDS patients. Instead, HIV slowly destroys the immune system, leaving the patient vulnerable to whatever microbes circulate in the environment. In the early stages of AIDS, when the immune system is only partly weakened, it can be hard to differentiate an ordinary patient from one infected with HIV. The rare diseases, such as aggressive KS, don’t usually attack until later in the illness. That’s why Roy Mugerwa, who began practicing medicine long before AIDS, never had a eureka moment. Instead, he recalls, “You observed over time patients coming in with symptoms you can’t explain. You are stuck, and that strikes you as queer.”

    TB, for example, is almost always confined to the upper lungs. But in HIV patients, it frequently spreads elsewhere in the body. Who got TB also changed. Mary Mbaziira, a veteran nurse at Masaka Hospital just north of Rakai, remembers that before the advent of AIDS, TB was largely confined to “very poor people or those herding cattle,” who contract the germ from raw milk. As AIDS spread, who came down with TB? “People around,” she says, gesturing expansively.

    Geshekter concedes that there may have been an increase in the illnesses associated with AIDS, but claims that any such rise was caused not by HIV but by the economic damage wreaked on Uganda by the dictatorships of Idi Amin and Milton Obote, the wars for liberation, and the imposition of financial “reform” by Western organizations such as the International Monetary Fund. He points to the work of Cambridge University history professor John Iliffe, who documents how public-health spending in Uganda plummeted during the 1970s and early ’80s by as much as 85 percent as per capita GDP shriveled.

    Apart from the fact that Iliffe is “appalled” by Geshekter’s interpretation of his work, the poverty theory doesn’t fit the facts. In interviews with doctors, Slim patients almost never mentioned food shortages, and Rakai, where the disease originated in Uganda, is very fertile. What’s more, war refugees suffered symptoms that were markedly different, recalls Nelson Sewankambo, now dean of Uganda’s Makerere University Medical School: “I had never seen the constellation of symptoms and signs that we began to see with Slim.”

    [

    So when Serwadda finally received the test results from those four KS patients, he rushed to show them to Sewankambo. Every one of them had tested positive for HIV. All but one of the control patients with ordinary KS had tested negative. “That’s when it dawned on us,” says Serwadda. AIDS was in Uganda.

    Almost immediately, Serwadda started spending his weekends at the medical library, leafing through case notes made by Sir Albert Cook, a missionary doctor who established Uganda’s first hospital more than 100 years ago. Cook’s renowned case notes, containing his hand-drawn anatomical sketches, “are very detailed and meticulous,” says Serwadda.

    As a doctor treating Slim patients, Serwadda knew what he was looking for—not just the words diarrhea or wasting, but clinical descriptions that matched what he was seeing. He kept going back for months, carefully turning the yellowed, brittle pages. But, he says, “I didn’t see it.”

    In the wards, however, he and other doctors were seeing more and more of it. In Zambia, Anne Bayley plotted her aggressive KS cases on a graph and realized that while the total numbers were still small, the increase was exponential—an exploding epidemic. In Uganda, the newspapers started reporting on the strange new Slim epidemic in Rakai, prompting a team from the Ministry of Health to investigate. They didn’t test the blood for HIV, but they did allow a brash surgeon named Wilson Carswell to send it, at his own expense, for testing.

    When almost all of the samples came back HIV-positive, Carswell organized an expedition to Rakai, consisting of himself, Serwadda, Bayley, Sewankambo, Mugerwa, and a taciturn virologist named Robert Downing. At Masaka Hospital and homes in Rakai villages, the team examined more than 100 patients. They diagnosed 29 people as having Slim and sent their blood to England for HIV testing.

    Every one of those 29 patients tested positive.

    “I was scared for my country,” recalls Serwadda. To learn the true scope of the epidemic and how to control it, Serwadda, Sewankambo, and Mugerwa drafted a research proposal. “These were Ugandans who wrote the proposal, not foreigners who said, ‘Do A, B, and C,’ ” recalls Sewankambo. “I’m proud of that.”

    Maria Wawer, a public-health researcher from Columbia University, later agreed to collaborate with the Ugandans and help secure American funding. The result was the well-known Rakai Project, which is still producing important research. Separately, the Uganda Virus Research Institute and the British Medical Research Council launched another research project in Masaka, which has produced almost 100 scientific articles.

    In their letter to Mbeki, Geshekter and Rasnick asked, “What evidence is there that people with antibodies to HIV live shorter, poorer lives than people in the same community who do not have antibodies to HIV? We know of no such evidence.” In fact, each of these Ugandan research projects has conducted exactly the acid test Geshekter and Rasnick asked for, by looking at HIV-positive people living side by side with those who are HIV-negative. If poverty were the real cause of AIDS, then there should be little difference between the fates of the infected and the uninfected.

    But the studies found that HIV-infected people died at a rate more than nine times higher than uninfected people. And the Masaka study found that infected people died a full two decades younger, at a mean age of just 34.

    Even more compelling evidence that HIV is lethal emerged out of a tragic lapse in Kinshasa, capital of the Democratic Republic of the Congo, then called Zaire.

    When the HIV antibody test became available, Kinshasa’s sprawling and impoverished main hospital lacked stores of screened blood and staff to run the tests 24 hours a day. During this window period, children came to the hospital in critical need of a blood transfusion, usually because of malaria. With the child facing death, doctors would transfuse unscreened blood, saving samples from the child and the donor for later testing.

    In this way, the famous research team Project SIDA, named for the French acronym for AIDS, identified 90 originally uninfected children who were given HIV-infected blood. Among children who survived the illness for which they were given the transfusion, those who received HIV-infected blood suffered a death rate 16 times higher than controls.

    “Let me take you back,” says Sewankambo. In the beginning, the high proportion of Ugandans with HIV puzzled him. “My thinking was very much affected by the North: This is a gay disease. But if there wasn’t that much homosexuality in our community, and we knew there wasn’t any, really, then what was the mode of transmission? I was expecting mosquitoes.”

    The mosquito hypothesis was easy to test. Sewankambo and others examined households in which at least one person had AIDS, testing everyone, including children and grandparents. If AIDS was spread by mosquitoes, the virus should be present almost randomly, and certainly it should be in many children, who are the most susceptible to malaria.

    [

    Nothing of the sort was found. Of the sexual partners of the AIDS patients, a striking 71 percent were infected. Yet of the other people living in the household, with whom the patients were not having sex, only two out of 100 of were infected—a woman who was sexually active and her two-year-old son. “It did certainly suggest strongly that it was sexually transmitted,” says Sewankambo.

    Yet in their letter to Mbeki, Geshekter and Rasnick insisted that the sexual spread of HIV is “merely a very popular assumption,” and pointed to a study conducted among couples in California showing that the odds of a man transmitting HIV to a woman during a single act of intercourse are slightly less than one in a thousand. From such first-world studies, they concluded that HIV is not frequently transmitted among heterosexuals anywhere.

    “Outrageous,” says the lead author of that study, Nancy Padian, who is also conducting research in Zimbabwe. “It’s more likely that the epidemiology of a disease would differ in different locations than be the same—just look at cancer and heart disease.”

    As for African research, it leaves no doubt that HIV is spread heterosexually. The sex and age distribution of HIV on the continent mirror patterns seen with other STDs. Risk factors for having HIV include more sexual partners, being a prostitute, having had sex with a prostitute, and a history of STDs. In Uganda, two studies stand out. In one, wives were more than 100 times more likely to contract HIV if their husband had the virus than if he didn’t. The other study, coauthored by Serwadda and Sewankambo, looked at couples in which one partner had HIV and the other didn’t. What they found was shockingly simple: The higher the level of HIV in the infected partner, the greater the chance of transmitting it. This study suggests that if a vaccine could merely reduce the amount of HIV in the bodies of infected people, the epidemic could be curtailed. Clearly, this has tremendous implications for the whole world—and it came from research in Africa.

    On the wall of Jane’s apartment, just above a gilt legend that reads, “Thinking of you,” is a photograph of her youngest son. Daniel had always been a sickly child, but only when he lay in a hospital bed with both kidneys failing was he tested for HIV. That’s when doctors tested Jane, but the fact that she was also infected barely registered. “All my heart was on my boy,” she recalls.

    But after Daniel died, Jane’s medical records show that she suffered from Kaposi’s sarcoma, tuberculosis of the lymph nodes, and painful fungal infections that failed to respond to treatment. One bacterial infection caused an abscess in her thigh, and another infected her blood. Jane felt so tired that she couldn’t climb the three flights of stairs to her apartment without stopping to rest several times.

    “I called in her brothers,” says her doctor, Peter Mugyenyi, “and I told them, ‘Look, your sister is going to die unless you mobilize money’ ” to pay for anti-HIV drugs. They did, and she began taking a cocktail of three drugs on September 3, 1999. “By two weeks,” says Jane, “I was able to walk up the stairs without stopping.” Now, even her KS lesions have vanished and she is worried about gaining weight, not losing it.

    The AIDS dissidents claim that HIV drugs actually cause AIDS diseases—an absurd notion for Africa, where only a tiny sliver of patients can muster the money to pay for the drugs. Still, Geshekter and Rasnick wrote to Mbeki, “The only blessing of poverty is that it may protect poor Africans from the highly toxic anti-HIV drugs that have already killed thousands, perhaps tens of thousands of Americans.” In line with such thinking, Mbeki has questioned whether AZT is too toxic to administer.

    What’s more, his spokesperson, Parks Mankahlana, declared that whether HIV causes AIDS remains an open question “because there’s no doctor that injects a human being that has got HIV/AIDS and that person gets healthy in two or three days’ time.” That’s true, but medical science has come closer to curing AIDS than any other viral disease. The drugs do not eradicate HIV from the body; they only suppress it. But once they became available, clinics all over the developed world recorded sharp reductions in disease and death among people with HIV.

    If AIDS in Africa were merely misdiagnosed old diseases, then the anti-HIV drugs should have no effect or, as the deniers claim, a harmful one. But Jane’s recovery is typical of African AIDS patients lucky enough to afford the expensive therapies.

    [

    Mugyenyi, Jane’s doctor, runs the Joint Clinical Research Centre, the main site for a special program that offers the HIV drugs at a discount. Still, they remain so costly that most of Mugyenyi’s patients wait until they are very sick before starting therapy.

    By carefully tracking his patients, Mugyenyi has demonstrated that those like Jane who can afford the recommended three drugs do better than those who can pay for only two. And, says Mugyenyi, the contrast with those who cannot afford any drugs—or who exhaust their resources and must stop the medication—is sharp: Those off therapy almost always sicken and die, while those on the drugs usually get better.

    But Mugyenyi is going further. He is in the process of measuring how effectively the drugs suppress the amount of HIV in a patient’s blood and then “correlating that with clinical improvement.” In other words, he is gathering the evidence to show that the better the drugs suppress HIV, the better the patient does. “We are demonstrating that here,” he says, “in Africa.”


    Research interns: Carl Bialik and Elinore Longobardi


    Testing the Test

    Sixteen nations, all in sub-Saharan Africa, have at least a tenth of their adults infected with HIV, according to United Nations figures announced last week. But according to AIDS dissidents, those figures are “meaningless” and no cause for alarm because the HIV antibody test is unreliable.

    They point out that other microbes and conditions such as pregnancy can create false positive results. And they note that in some African countries, national surveillance is conducted with just one type of test.

    What they fail to mention are the quality-control measures African countries have put in place. In South Africa, for example, the testers get tested with blood sent by a central lab, and in Uganda, the national surveillance team confirms every positive result with a different type of test. Using these and other measures, both countries have found that the antibody tests are accurate more than 98 percent of the time.

    These days, there are many kinds of tests, some of which look for material from the virus itself rather than antibodies. For more than 12 years, Ugandan researcher Benon Biryahwaho has helped analyze the tests to make sure they are accurate in his country. “By combining different methods and processes,” he explains, “we narrow the window for error.” —M.S.




    MORE VOICE COVERAGE OF AIDS IN AFRICA BY MARK SCHOOFS:

    villagevoice.com exclusive: Debating the Obvious

    Inside the South African Government’s Controversial AIDS Panel


    AIDS: The Agony of Africa

    The Pulitzer Prize-Winning Series by Mark Schoofs

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    Debating the Obvious

    VILLAGEVOICE.COM EXCLUSIVE

    JOHANNESBURG, SOUTH AFRICA—The most surreal moment happened right on the first day.

    South African president Thabo Mbeki convened a panel of scientists to advise him on how to handle his country’s surging AIDS epidemic, and it met on July 3 and 4 in Johannesburg. This panel has sparked a firestorm of criticism, because many of the invited scientists, who met for a first round in May, are so-called “dissidents” who cling to the fringe view that HIV does not cause AIDS and that AIDS in Africa does not exist but is instead just a new name for the old diseases of poverty and lack of hygiene. The meeting, attended by the South African minister of health, was closed to the press except for a handful of invited observers, including this reporter.

    On the first day, prominent dissident David Rasnick—a California biochemist whose advice President Mbeki had sought out earlier this year—made the proposal that all HIV testing be banned. Stunned, South African scientists on the panel asked if Rasnick meant banning the test even to screen the nation’s blood supply. “If I had the power to outlaw the HIV antibody test,” said Rasnick, “I would do it across the board.”

    Rasnick also denied that he had seen “any evidence” of an AIDS catastrophe, despite the testimony of African physicians about the drastic change AIDS has caused in their clinics and hospitals. More evidence emerged from South African mortality records, showing a shocking rise in deaths among adults in the prime of their life. In 1990, 48 percent of deaths among men occurred in the 15–49 age group, but by 1999–2000, that age group accounted for 87 percent of the deaths. For women, the rise has been just as alarming, from 27 percent to 68 percent.

    Publicly, the ministry of health applauded the robust debate—and, indeed, the most extreme dissidents, like Rasnick, may have discredited themselves. In private, health department officials veered between amazement and ridicule of Rasnick’s proposals, and Peter Duesberg, the most famous AIDS dissident, gave a presentation so removed from African medical reality that it left several local doctors shaking their heads.

    But while the vast majority of South African AIDS researchers know that HIV causes AIDS—and certainly know the disease is ravaging their country—this panel was not for them. It was for their president, who desperately needs a way to save face for giving credence to people who deny the very existence of the worst danger facing his country, and for Africans who may be hearing the dissident ideas for the first time and need to know the evidence for and against [“Proof Positive” and NIAID Web Site]. Winstone Zulu, a prominent HIV-positive activist on the panel, welcomed the discussion because it gave him hope. “For 10 years I’ve lived with HIV,” he told the Voice, “and for 10 years I’ve preached the main line. To hear that I could be wrong is good news. If you were in my shoes, you could understand.” Indeed, Zulu comes from Zambia, where people are so poor that the costly drugs that have reduced the AIDS death rate in rich nations amount to a cruel mockery. Yes, people must “face reality,” Zulu said, but added, “Ideas from the other side will find very fertile ground in Africa because the conventional thinking hasn’t been of much use.”

    That’s one reason why Joseph Sonnabend, a South African–trained doctor practicing in New York, was so angry about the strategy adopted by most mainstream panelists toward the Internet debate set up by the South African government. They decided not to contest every dissident point—partly because they have been exhaustively debated among scientists for more than 10 years—but instead to prepare broad responses to questions posed by the president and the panel moderators. Sonnabend, one of the few mainstream members to participate wholeheartedly in the Internet discussion, called the limited involvement by his peers “unconscionable.” The minister of health, Manto Tshabalala-Msimang, went further, saying her government felt “betrayed” by unnamed South African scientists for discouraging foreign panelists from joining the debate—a charge South African researchers flatly denied.

    Yet, in the end, there was something to show for it all: research proposals put together by both sides. Ministry of health official Khotso Mokhele hyped the planned studies, which he said he expected to be completed by the end of the year, as so rigorous a test of the hypothesis that HIV causes AIDS that afterwards one side might “shut up once and for all.”

    “He was a bit overexcited and overspoke,” said Harvey Bialy, Duesberg’s biographer and the dissident scientist who worked hardest on designing the study. What Bialy hammered out with Helene Gayle, head of the AIDS program at the American Centers for Disease Control, and Malegapuru Makgoba, president of the South African Medical Research Council, is a broad proposal on how to test the test—specifically, to see whether the standard antibody test concords with other HIV tests, including isolation of the virus, a laborious and expensive process that is usually done only for research purposes. Obviously, this study will not determine if HIV causes AIDS, but it could give fresh credence to a test that the dissidents have steadily tried to undermine.

    The other proposed study was more a sharing of data. Some dissidents, such as Bialy and Rasnick, had theorized that HIV is a harmless “passenger virus” that is inherited at birth and causes no disease. To test this hypothesis, they proposed a telephone survey of people who had been rejected in the 1980s from enlisting in the American army as a result of testing HIV-positive. If the vast majority were still alive, then that would suggest that HIV is harmless.

    Aside from the fact that there are no records tracing such people, there are much simpler ways to determine whether HIV is deadly. Researchers at Chris Hani Baragwanath hospital in Soweto followed children born to HIV-positive mothers and found that infected babies had a death rate more than 19 times higher than uninfected babies. The CDC has provided the dissidents with its vast data on children born to infected mothers, which also shows that babies with HIV have a higher death rate than those without the virus.

    But the dissidents claim that HIV might not be what is killing the babies; for example, they argue that the AIDS drug AZT can cause AIDS diseases. And so, holding the CDC data in his hand, Duesberg asked Gayle whether the babies with HIV had received AZT. Gayle started to answer, but Bialy cut in, saying yes, the babies had received the drug. Duesberg then shouted that AZT was what probably killed the babies, and, as Gayle kept trying to answer his original question, Duesberg stormed out of the room. Eventually, Gayle explained that some of the babies had received the drug while others hadn’t, and that the CDC was preparing a breakdown for the dissidents to analyze.

    And so it went. Makgoba asked the dissidents to come up with an explanation better than AIDS for the grotesque spike in deaths among young adults. Rasnick tried, saying it was simply because the apartheid government had kept poor records of black people and so “we’re now seeing what’s been going on for the last 20 or 30 years.” But that wouldn’t explain why young people are dying more than the elderly, nor why young people are dying at rates that continue to increase even as the new South Africa improves access
    to clean water and decent housing. Nor would it explain the similar rise in deaths among young people in neighboring Botswana, which has had a stable and relatively prosperous democracy for more than 30 years.

    Some dissidents, such as Duesberg, suggested a toxin or a lack of nutrients might be causing the increase in deaths, but they were unable to specify what exactly the toxin or nutrient deficiency might be in Africa, nor why it should strike mainly young adults while sparing those who are traditionally the most vulnerable to malnutrition, the very young and the very old. Duesberg also argued HIV cannot cause AIDS, because a single virus causes only limited, specific symptoms whereas AIDS comprises many diseases. In fact, HIV is exquisitely specific; it destroys the immune system, leaving the body unable to defend against numerous microbes, which in turn cause the many symptoms of AIDS.

    But beyond an explanation, asked South African panelist Salim Abdool-Karim, “what are the positive recommendations” the dissidents would make to curtail the problem? Here, at least, there was some common ground, because dissidents and mainstream panelists alike favor the apple-pie goals of alleviating poverty and improving basic health care. But most of the dissidents argued against providing anti-HIV drugs, which they claim are so toxic that they do more harm than good, despite evidence from all over the world that they reduce AIDS-related death and disease.

    What will the panel’s convener, President Mbeki, conclude from all this? Just before his panel met, more than 5,000 scientists released a declaration stating why they know HIV causes AIDS. The president’s office was reportedly furious, fearing that it presaged a bashing of Mbeki by the huge International AIDS Conference, set to open on July 9 in the South African city of Durban.

    Yet there are also signs that Mbeki is realizing that the fundamental dissident tenets will not help his country. His ministry of health recently launched a new five-year plan to combat AIDS that stresses such mainstream tactics as safer sex, and South Africa continues to invest in developing an HIV vaccine. According to Seth Berkley, president of the International AIDS Vaccine Initiative, Mbeki recently stated in public that he believes HIV causes AIDS and that the main problem is treatment. Mbeki has also pointed out that even if the price of anti-HIV drugs fell by half, providing them for all his infected citizens would consume South Africa’s entire health budget.

    This Sunday, just before the huge International AIDS Conference opens, the price of drugs will be catapulted into the headlines by a large protest march. Immediately after that march, Mbeki will step to the podium to deliver the opening address of the conference. What will he say? Will he endorse the recommendations of those who deny that an epidemic even exists? Almost certainly not. But will he throw his full weight behind what the overwhelming body of scientific evidence shows? Will he face reality?


    MORE VOICE COVERAGE OF AIDS IN AFRICA BY MARK SCHOOFS:

    Proof Positive
    How African Science Has Demonstrated That HIV Causes AIDS


    AIDS: The Agony of Africa
    The Pulitzer Prize-Winning Series by Mark Schoofs

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    Fossils in the Blood

    DOBE, BOTSWANA—In the shade of a tree, 140 kilometers from the nearest paved road in an endless plain of scrub brush and sand, Nxuka Nxu is discussing the origin of human beings. An elder of the !Kung San hunter-gatherer tribe, with a face as wrinkled as a raisin, she says emphatically, “We are the first people.”

    Many traditional cultures mythologize themselves as the progenitors of all humanity, but the !Kung San people, sometimes called the Bushmen of the Kalahari, have a better claim than most. Geneticists have found fragments of DNA in the Khoisan ethnic group, of which the !Kung are one tribe, that appear to date back to the very first human beings. Most other African ethnic groups lack these genetic traces, as do people from Asia, Europe, and the Americas. Indeed, a few of these ancient genetic fragments have been found only in the Khoisan.

    These findings, which are still emerging, “help us understand our past,” says Himla Soodyall, a South African geneticist who has conducted much of this work. In addition to bolstering the theory that modern humans arose in Africa and then migrated around the globe, these findings also weigh in on the newer debate of exactly where humans originated. They support the idea that the cradle of humanity is southern Africa, where the San live, and not eastern Africa, as was widely thought.

    On this continent, where people are trying to kindle an African renaissance, this new genetic research “can reinstill pride in the richness of African history,” says Soodyall.

    Yet the research could also be twisted to bolster deep-seated prejudices against the San, probably the most abused and downtrodden ethnic group in southern Africa. One method used to determine the age of genetic fragments is to compare them to the genes of chimpanzees and other nonhuman primates. The ancient DNA segments in the Khoisan are more closely related to chimp DNA than are those of any other people. Given how the Khoisan have been dehumanized—scientists once postulated that they had fewer chromosomes—it is all too easy to imagine how this research could be misused. Here in the village, an elderly San man named Xuma Kgao ponders the idea that his people bear traces of the first humans. “God made us lucky in that way,” he says. But, noting how his culture has been denigrated and destroyed, he adds, “It’s not luck anymore. It’s a drawback.”

    So, given the tragic history of the San, not to mention all the other ethnic and racial bigotry this continent has endured, perhaps the most astonishing fact is that the research appears not to have inflamed prejudice. In fact, when Soodyall and her colleague Trefor Jenkins presented their preliminary findings to a 1997 conference devoted to Khoisan identity, they were met with praise, not protest.

    That’s partly because the researchers vigorously resist bigoted interpretations of their findings. They note that the genetic traces that date back to the first humans are just that: traces, fragments picked out of the 3 billion letters that make up the human genetic code. In other parts of their DNA, the Khoisan have very recent mutations. “It’s not as if they stopped evolving and were put away on a shelf,” says Michael Hammer, a University of Arizona geneticist who has collaborated with Jenkins and Soodyall. “They preserve ancient lineages, but they are not an ancient group. They are as evolved as any other people.”

    The new South Africa might be the best place for such research, because freedom from the crushing oppression of apartheid has fostered a candid and mostly positive discussion about ethnic differences and identity. In his inauguration speech last year, South African president Thabo Mbeki vowed to “rediscover and claim the African heritage,” noting that, “From South Africa to Ethiopia lie strewn ancient fossils, which, in their stillness, speak still of the African origins of humanity.” What geneticists have essentially discovered is that DNA is also strewn with “fossils,” mutations that have been preserved through generations.

    In addition to shedding light on humanity’s origins, “population genetics,” as this branch of science is known, can also illuminate more recent episodes in history. For instance, Jenkins and Soodyall have studied the Lemba, a group of so-called Black Jews who claim to be a lost tribe of Israel, and found that many of them have genetic markers similar to those of Semitic people. Another team of geneticists has discovered that a few of the Lemba even have a marker common among the Jewish “Cohens,” a hereditary lineage of priests. “There are so many stories written in the genes,” says Soodyall. “My goal is to understand the history of each mutation.”

    For Jenkins, the goal is to “counter racism scientifically” and candidly. “You can’t claim there are no differences” among ethnic groups, he notes, “because people will say, ‘We can see we’re not the same.’ ” What genetics does show is that the similarities among all humans far outweigh their differences.

    [

    Under apartheid, when every citizen was assigned an official racial identity, people used to ask Jenkins to help them gain a “race reclassification.” He recalls, “I would say to the person, ‘What race do you want to be classified as?’ ” Examining their blood, it was always easy to find genetic markers in blacks or “coloreds” that were also present in whites, allowing Jenkins to bolster their appeal to be racially reassigned. As Jenkins explains: “What people use to classify the races”—skin color, hair type, and nose shape—”represents only a very small proportion of the whole genome.”

    But then, no one ever needed DNA analysis to oppress the San. That’s why Xixai Gakekgosi, a politically active villager, doesn’t fear racist ramifications from the new research. It can hardly make matters worse, he says. “People already see us as outsiders and look down on us.”


    In nearby Quaa village, some women spot a mophane worm in a tree, and a boy clambers up into the branches to knock it down. Like the sweet, yellow-orange motsontsojane berries, this worm is one of the many delicacies relished by the !Kung hunter-gatherers. Avoiding the sharp, black spines that jut out from its blue and yellow body, a woman tosses the worm, fat and long as a breakfast sausage, onto hot coals. While it cooks, an elder named Tcgoma Xontae plays a handmade lyre called a quru and sings in a high, beautiful voice.

    But if the scene appears idyllic, the life of the San is not. “My parents could control the forest and go out to hunt,” says Xontae. “But now someone else controls our life.” Indeed, for all practical purposes, the Botswana government has barred the San from hunting. Most have been removed from the Central Kalahari Game Reserve. The few licenses that are granted limit the hunting season and the number of animals the San can kill.

    It’s merely the latest chapter in an ancient history of oppression. The Bantu-speaking Africans, farmers who expanded throughout most of sub-Saharan Africa from the area near the present-day border between Nigeria and Cameroon, pushed the Khoisan off their land, sometimes enslaved them, and deemed them inferior. White Christian settlers slaughtered thousands of these indigenous people and had serious debates about whether the Gospels applied to them. (The Khoikhoi, called Hottentots by the Dutch settlers, herd cattle, while the San, to whom they are closely related, live by hunting and gathering.)

    In the 1970s, the army of the old apartheid South Africa used the San as scouts in its war against Namibia and Angola. Pawns in a war that wasn’t theirs, those scouts and their families—about 4000 people altogether—now live in a tent city in South Africa, hundreds of miles from their homeland. And in Botswana, which has some of the world’s richest diamond deposits, mining interests inevitably prevail in land disputes.

    The San are quite possibly the most studied indigenous people on earth, yet myths about them abound. The San are reputed to be wholly innocent and peaceable—”the Harmless People,” as the title of one influential book put it—but, as the anthropologist Richard Lee documented, murder does happen, and the San sometimes execute the perpetrators.

    But nothing has been as damaging as the myth that the San are backward and primitive, which is profoundly entrenched in southern Africa. One widespread misconception is that they do not wash. A recent report on the educational problems facing the San—they have astronomical dropout rates—reported that one boarding school headmaster wouldn’t give San children mattresses or even blankets, on the rationale that their unwashed bodies would dirty the bedding. It is possible that their isolation—first geographic, then cultural—is what preserved the ancestral genetic patterns.

    Forced to abandon their traditional way of life but barred by prejudice from joining modern life, the San now subsist in a kind of limbo. In this region of Botswana, they live mainly on government food handouts. While they used to store what they gathered for future use, now they try to sell it—and the cash often buys alcohol and tobacco.

    “We don’t have a life, says Xuma Kgao. “There is nothing we can do for ourselves. Our hands and feet have been cut off.”


    Joining the discussion on the origin of humanity, a young mother named Nxae Nxu rules out the possibility that people evolved from animals. “The first two people were San, and we were always like this,” she says. So why do the races look so different? “That’s a tough one,” she says, laughing. “After God created these first two people, they had children, and generation after generation they started to change a bit.”

    [

    And that, pretty much, is what the geneticists also think. They examined DNA from the Y chromosome, which is passed only from father to son, and from the mitochondria, tiny cellular proto-organisms that are passed down the maternal line. Using various mathematical models to estimate how frequently mutations are made, the researchers estimated the age of the different genetic variants, called polymorphisms.

    At least two teams, working independently and looking at different parts of the Y chromosome, found that the oldest variants are most common in the Khoisan. Jenkins and Soodyall also analyzed the mitochondrial DNA. Virtually all of the !Kung have the most ancient mitochondrial fragments, which date to about 120,000 years ago, roughly the time humans are thought to have evolved into their modern form. The genetic findings accord with at least one line of fossil evidence, and various likely mathematical models yield similar results. Yet just as fossil evidence has often been reassessed, this genetic analysis could be off the mark. As one !Kung man said about the research, “I don’t know my relationship to the first people, because I wasn’t alive then.”

    One of the myths about the San is that their genes are what enable them to survive in the harsh Kalahari climate, where the nights are frigid, the days scorching, and water is scarce. But while they may have evolved some advantageous traits, the notion that they owe their survival mainly to unique physical characteristics is false, says Phillip Tobias, a South African anthropologist who has studied the Khoisan. He notes that the San traditionally filled ostrich shells with water and buried them for use in dry times, that they drank the juices out of the stomach of freshly hunted animals, and that they smeared their skin with animal fat to keep from dehydrating. Such “cultural tricks,” he says, were more important than any genetic mutations in helping them to survive.

    Now the San face the harsh climate of a culture stacked against them. Again their survival depends not on their genes, but on the ability to adapt culturally. But this time, their way of life depends not only on the San themselves, but on whether southern Africa’s majority populations can overcome one of humanity’s oldest and possibly inherent characteristics: prejudice.

    Research intern: Elinore Longobardi

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    Giving It Away

    In an unexpected move, the pharmaceutical giant Pfizer offered last weekend to donate a crucial drug to South Africa. Called fluconazole, it treats one of the most feared AIDS opportunistic infections, a painful and lethal brain disease known as cryptococcal meningitis.

    The offer gives hope to South Africa’s 3.6 million people with HIV, because studies show that almost 10 percent of AIDS patients contract cryptococcal meningitis, and, bereft of medicine, most South African doctors have been forced to send patients with the illness home to die. Yet Pfizer’s proposal, which is limited to South Africa, sidesteps the larger issue of how to make drugs available throughout the developing world.

    Pfizer’s move comes in the wake of a worldwide campaign orchestrated by the Nobel Prize-winning Médecins Sans Frontiéres, ACT UP, and the South African activist group Treatment Action Campaign. This coalition had demanded that Pfizer lower the price of fluconazole—also known by its brand name, Diflucan—by about 90 percent, to match the price of a generic version of the medicine made and sold in Thailand. The Thai price is about 70 cents, while the South African government pays about $7.50 for the same dose.

    Donating the drug “is more than we asked for in some ways,” said Zackie Achmat of Treatment Action Campaign. He added that activists were in a meeting with lawyers preparing to petition the government to take legal action against Pfizer “when the call came through” from the drug company. “It floored us,” said Achmat.

    The South African government, which has recently criticized pharmaceutical companies for profiteering, was more reserved. It welcomed Pfizer’s offer and agreed to meet with the company. But health ministry spokesperson Nothemba Dlali said the government feared that the donation might be only temporary—in which case South Africa would have to deal with thousands of patients demanding that the government pick up the tab when the drug would no longer be free. “The intention is good,” said Dlali, “but we wonder in what position it will leave the government.”

    Activists, too, cautioned that donations are not a sustainable way to solve the desperate dearth of drugs in the developing world and, in particular, sub-Saharan Africa, where more than 23 million people are infected with HIV. In a statement released by Médecins Sans Frontiéres, Kenyan physician Chris Ouma said, “We’re very happy for the South Africans, but for me, as a Kenyan doctor, and for the Kenyan patients dying from cryptococcal meningitis, it doesn’t help much.”

    Providing fluconazole at no cost does not alleviate the other problems that undermine health care in South Africa. For example, hospitals in some parts of the country routinely face shortages of basic drugs, such as those used to treat tuberculosis. Nevertheless, doctors in South Africa were jubilant, if only because most of them can currently do nothing to treat cryptococcal meningitis because fluconazole is far too expensive. “The bottom line is money,” said Florence Tleane, a doctor at Natalspruit Hospital, which serves three large townships outside Johannesburg. “If the drug is free, we would definitely treat patients.”


    So new is Pfizer’s offer—made by hand-delivered letter—that at press time even the company was unsure of many details. But Dr. George Flouty, medical director of Pfizer’s public health program, said that the company wants to model the fluconazole donation on its current program to combat trachoma, the world’s leading cause of preventable blindness. To treat that illness, which is confined almost wholly to the Third World, Pfizer donates its antibiotic Zithromax, but only through programs that comprehensively address the illness with education and efforts to clean the water supply. Similarly, said Flouty, “We don’t want to just air-ship fluconazole to South Africa. We want to ensure proper diagnosis, treatment, and follow-up.”

    Follow-up is one of the most crucial aspects of treating cryptococcal meningitis in AIDS patients, because once the initial, acute attack is treated, people with HIV must take fluconazole every day or the disease almost always returns. Will Pfizer donate the drug just for the initial treatment or also for the prevention of relapse—which could hugely inflate the company’s cost? Flouty said such “nuances” were still being worked out, but added, “I’m going to go out on a limb here. If that’s the right thing to do, I think we would want to do it.”

    Why would Pfizer donate the drug rather than reduce the price? “It’s better to give it away,” said Hemant Shah, a stock analyst who tracks pharmaceutical companies. “Otherwise you can have a 60 Minutes show asking why the product in South Africa is cheaper than in the U.S.” Instead of negative press, Pfizer can now reap public-relations benefits for its charity. Merck, for example, has garnered excellent publicity for its long-standing program that gives away Mectizan for river blindness.

    But already, activists are asking for more. “This is limited to South Africa and to people with cryptococcal meningitis,” said Eric Sawyer, a veteran ACT UP member who recently infiltrated Pfizer’s corporate offices in New York. “But people also die of esophageal thrush,” another common AIDS illness that fluconazole treats. “Access needs to be broader and sustainable and global,” said Sawyer. Indeed, the donation may pressure other companies to offer discounts or giveaways, and it could pave the way for negotiating two-tiered pricing for fluconazole throughout Africa.


    Pfizer’s offer hangs on its ability to negotiate an acceptable program with the South African government, which may prove difficult. In 1998, Glaxo Wellcome offered a 75 percent discount on its drug AZT, which can reduce mother-to-child transmission of HIV. But South Africa has rejected that offer. And recently President Thabo Mbeki’s spokesperson, Parks Mankahlana, compared pharmaceutical companies to “the marauders of the military industrial complex,” and Mbeki himself, in a letter to a prominent South African doctor last month, defended his decision not to provide AZT to pregnant women by accusing “many people in our country” of sacrificing “all intellectual integrity to act as salespersons of the product of one pharmaceutical company!”

    The South African government’s stance on AZT has angered and alienated AIDS workers, locking the two sides into an adversarial relationship. But Pfizer’s offer could “break the logjam,” says Achmat, noting that the health ministry has invited his group to discuss the fluconazole proposal. “We will be working very closely with the department of health,” he predicts, “and we will be looking at all drugs, not just this one.”

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    The War For Drugs

    RIETPOORT FARM, STANDERTON DISTRICT, SOUTH AFRICA—Every time Christina Makhubu came home, it was like Christmas. Working as a housemaid in South Africa’s capital, Pretoria, she made more than anyone else in her family, including her brothers, who work as farmhands. So she would bring her mother dresses, her two sons books and once even a bicycle, school fees for her nephew, furniture for the house, and of course food for everyone. Her family—three generations gathered together in a room lit by a single candle, around the table where they would feast at her homecomings—remembers the last time Christina came home. She was so tired, and then the headaches began. She said she felt drunk and confused, and then she started seeing things that weren’t there—snakes on the wall, and other animals that terrified her. The pain in her head just got worse, and when she began to fall down trying to walk, they took her to the hospital for the last time.

    At some point, maybe years before, Christina had inhaled spores of the cryptococcus fungus. Healthy people control the infection, but HIV had ravaged Christina’s immune system, so the fungus was able to pass into the blood, which carries it to the brain. There it sets up colonies—pearly, glistening spheres along the blood vessels of the brain, most abundant on the wrinkled surface but also present deep in the brain’s core. The fungus does not kill neural cells, but it makes them swell, squeezing the brain inside the skull and turning the gray matter into “a big bag of mush,” explains John Bennett, who has studied the disease for 30 years at the National Institute of Allergy and Infectious Diseases in the United States. “When the skull is cut open at autopsy, the brain bulges out like toothpaste out of a tube.”

    This is cryptococcal meningitis, one of the most feared opportunistic illnesses that kill people with AIDS. It can be treated, but one of the key drugs—fluconazole, which also works well against thrush, an extremely common ailment among HIV patients—costs the equivalent of about $7.50 for a standard dose, far too much for South Africa’s struggling health care system. Pharmaceutical giant Pfizer holds the patent for fluconazole and sets the price in almost every country. But in Thailand, the government permits local companies to make a generic form of the drug; the price for the same dose is only about 70 cents.

    Now, the Nobel Prize-winning organization Médecins Sans Frontières, ACT UP, and a South African AIDS activist group called Treatment Action Campaign are leading an effort to pressure Pfizer to match the Thai price, or to give TAC a license so that it can find a company to manufacture a generic version of the drug. Last Monday, the activists delivered letters to Pfizer offices in 18 different countries, giving the maker of Viagra and Zoloft one week to agree. But on Monday, the deadline passed and the company did not acquiesce, so both sides are preparing for a long siege.

    This high-profile, high-stakes battle raises the possibility that the South African government might compel Pfizer to allow a generic version of fluconazole to be manufactured. Or the government could pull an end run by importing the Thai version of the drug. Either of these actions would force a showdown on international trade regulations, which the pharmaceutical industry insists support the right of companies to determine prices around the world. But humanitarian groups—as well as a swelling chorus of politicians, including Clinton, Gore, and many members of Congress—believe those regulations should allow developing countries to obtain medicines that fight major epidemics, such as AIDS, at the lowest possible price.

    This is the fight that will capture the attention of the international media. But here in South Africa, which is a blend of the First and Third Worlds, the push for this drug has laid bare some of the most daunting problems in treating AIDS. Insufficient money to purchase medicines is certainly the biggest obstacle, but there is also the government’s frequent failure to deliver cheap drugs to hospitals, doctors’ unfamiliarity with treatment possibilities, and a population that thinks of HIV as utterly hopeless and so gives in to despair. The fight over this one drug—which does not even target HIV itself but rather some of the opportunistic illnesses the virus causes—is therefore a microcosm of South Africa’s battle to treat its 3.6 million citizens with HIV.


    At Standerton Provincial Hospital, where Christina Makhubu died, senior medical superintendent Eckhart Oosterhuis desperately wants fluconazole, but he also wants a lot of other drugs. In 1998, the last year for which local figures are available, a shocking 51 percent of women attending public prenatal clinics in Standerton were infected with HIV. The hospital is supposed to stock 169 so-called essential drugs, but, producing a list, Oosterhuis says he is completely out of 38. “Our supplies are low for about another 50,” he adds.

    In AIDS, there are two conditions that are absolutely critical to treat: tuberculosis, because it probably kills more HIV-positive South Africans than any other opportunistic infection and because it imperils the general population; and sexually transmitted diseases, because people who have them are more likely to contract and transmit HIV. But despite being fairly cheap, drugs to treat these problems are often unavailable. For example, according to a report by the provincial government, TB drugs were out of stock between 15 and 30 percent of the time. As for STD drugs, Rensie Vellema, the Standerton district communicable disease coordinator, says that at least one is unavailable most of the time. “It’s really a disgrace,” she says. “If we send patients to a private pharmacy, they can’t afford the drugs.”

    Mpumalanga Province is “worse than the norm,” says Andy Gray, an expert on drug availability in South Africa with the independent organization Health Systems Trust. But he adds that in rural clinics around the country, drug shortages “are not uncommon.” Here in Mpumalanga, the province with the second-highest rate of HIV in South Africa, Kelvin Billingurst, the chief medical officer in charge of AIDS, says, “If we can’t have drugs for TB and STDs, then we can’t even begin to think about fluconazole.”

    “That is a bureaucrat’s viewpoint,” says Zackie Achmat, one of the founders of TAC and an architect of the current Pfizer battle. “It’s their administration that is bad.” He hopes that by pushing for fluconazole, the larger problems of the health care system will come into focus—and under pressure.

    Achmat also hopes something else will become clear: the fact that there are life-prolonging treatments. He points out that the government has not yet issued national treatment guidelines and says that for many opportunistic illnesses, “The line is, very quietly, ‘Don’t treat.’ ”

    Certainly that is true for cryptococcal meningitis. A few large hospitals do treat this disease, but most medical centers are more like Natalspruit Hospital, serving three teeming, crime-ridden townships outside of Johannesburg. Here, the most common problem is not HIV but trauma—injuries from violence, car crashes, and the like. When HIV patients arrive with cryptococcal meningitis, they are stabilized, given painkillers for the headache, and sent home to die.

    After their inpatient rounds, where virtually every bed is full, and after their outpatient clinic, where scores of impoverished people wait on wooden benches, Drs. Leena Thomas and Florence Tleane discuss fluconazole. They want the government to get the best price, but they are caught in devil’s dilemmas that American doctors rarely face.

    For example, patients with cryptococcal meningitis usually need to be hospitalized for two to four weeks, “but a long stay means taking up someone else’s bed,” says Thomas. The death rate from cryptococcal meningitis “is quite high despite treatment,” notes her boss, medical superintendent Varughese George. “So, should we treat a disease that has a poor outcome or utilize those funds for other patients?”

    Tleane says she would refer cryptococcal meningitis patients who are HIV-negative to a better-equipped hospital, because such people stand a good chance of being permanently cured. But in an AIDS patient, the disease is a sign that the immune system is so tattered that the end is not far off. Moreover, to keep the disease from recurring, HIV patients must take fluconazole every day for the rest of their lives. In addition to cost, “compliance is a problem with our patients,” says Thomas. “Would they take the pills? I can’t say that I’m desperate for this drug. I haven’t used it on patients, so I can’t say how effective it is in our community,” she concludes.

    “You’re not going to see enthusiasm in doctors who haven’t treated people with the drug—not because they don’t care but because they don’t know,” says Achmat, who has HIV himself. “This shows the amount of work we have to do in this country. Treatment literacy, even among doctors, is very bad.”

    It’s worse, of course, among patients. “Since there are no treatments, people are always hopeless,” says Selby Sibaya, an openly HIV-positive counselor at Standerton hospital. His colleague, chief nurse Evelyn Moumkawe, agrees. “The minute they know they’re positive, they deteriorate fast,” she says. “It’s psychological. They despair.”

    Ultimately, this is what the fluconazole campaign is trying to do—inject hope into the bleakest of epidemics. That’s more than a sentimental gesture. People avoid getting tested, say doctors and AIDS workers, because what can they do if they’re infected? And if they don’t know they carry the virus, they often are not as careful about protecting their partners. If parents could live an extra year or two—which has been proven possible even without drugs that target HIV itself—their children might get a better start in life before being orphaned. Drugs like fluconazole would inspire hope, says Sibaya, “because we wouldn’t be saying anymore, ‘Go home and wait for your time.’ ”


    Just a few steps away from Sibaya’s office, a woman lies panting, even though she is breathing through an oxygen mask. TB is rampant in her lungs, complicated by thrush, a fungal infection that has coated her mouth and esophagus with a white, velvety carpet of pain. More than 40 percent of South African HIV patients get thrush. The woman panting into her mask has it so bad that she can’t swallow, not even to drink, yet the disease also gives her diarrhea, depriving her of nutrients and energy. She’s being fed intravenously, but if she could eat solid food and didn’t have to fight two major diseases at once, she’d have a much better chance of pulling through.

    The drug she’s been given for thrush, nystatin, is weak and hasn’t worked. Fluconazole is the most effective drug, but of course it’s not available. And so, says nurse Moumkawe, “she probably won’t make it.”

    Additional articles on AIDS by Mark Schoofs.