The Village Voice, by Mark Schoofs
Columbia University President George Rupp (right) presents Mark Schoofs with The 2000 Pulitzer Prize for International Reporting.
Winning Work
The Virus Creates a Generation of Orphans
By Mark Schoofs
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.
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."
© 1999, The Village Voice
A Tale of Two Brothers: Fela Didn't Believe AIDS Existed. But then he died of the disease. His brother is still trying to convince Fela's fans that HIV is real.
By Mark Schoofs
LAGOS, NIGERIA -- This is not an easy country, but Lagos, Nigeria's teeming megacity, is almost fantastical in its difficulties. Rarely do 24 hours pass without a blackout, and power outages lasting weeks are common. Officially, NEPA stands for National Electric Power Authority, but everyone jokes that it stands for Never Expect Power Anytime, so those who can afford it own a diesel generator. But that's not a guarantee, because even though Nigeria is one of the world's biggest oil producers, mismanagement causes frequent fuel shortages: One AIDS researcher lost 3000 refrigerated blood samples when a power outage and a fuel shortage coincided.
Running water? Even wealthy Lagosians often lack it; they pay for trucks to fill up large tanks. Doctors wash their hands with water from buckets. Calling the police is virtually impossible, because even if your phone is working the one in the police station probably isn't. Military dictatorships have plundered Nigeria for most of the 39 years since the country wrested its independence from Britain, and a favorite scam of "the military boys," as they are called, was to transfer government contract money into private Swiss bank accounts and pay off cronies to sign forms stating that, yes, the work had been completed even though anyone with eyes could see that nothing at all had been done. Directors of private companies often award contracts to the highest briber, and many Lagos buildings feature signs warning, "This house not for sale" because con men sell homes they don't own.
What can be relied on in Lagos? The heat. The pollution. The epic traffic jams called "go-slows" that trap millions of commuters for hours, most of them sweltering inside crowded minivan taxis. And Fela.
Fela Anikulapo-Kuti, the international music star who married 27 women in one day and who usually appeared on stage with nothing but his sax, the skimpiest briefs, and a joint that, as one writer put it, was the size of a small African nation-Fela championed African culture over all things white and he fearlessly excoriated the military governments that were ransacking Nigeria. Foolishly, the state boosted his standing by giving him the dissident's ultimate seal of credibility: jail time. During this year's democratic elections, which brought former military ruler Olusegun Obasanjo back into power, Fela's song "Soldier Go, Soldier Come" could be heard everywhere, accusing Obasanjo and the rest of the military boys of operating a revolving door to power.
But during the election, that song was never heard live, because Fela died in 1997 of a disease he claimed didn't exist, and certainly not in Africa: AIDS. No matter that Fela's older brother, Professor Olikoye Ransome-Kuti, had served as the country's health minister and launched Nigeria's much-lauded early AIDS program. About the only concession Fela made to white medicine was to let Olikoye stitch up his head after the police had gashed it. There was hardly an illness African herbs couldn't cure, Fela maintained, and he dismissed condoms as unnatural, unpleasurable, and a white plot to reduce the black birthrate. He believed, says Olikoye, that "all doctors were fabricating AIDS, including myself."
By the time Fela allowed himself to be taken to a hospital, he was so far gone he never heard the test results confirming that he was infected with HIV. A few days later, deep in a coma, he choked on his own vomit and died.
Then began the fight for Fela's death-and, in a way, for Nigeria's life. Astoundingly popular, Fela carried the potential to do for AIDS in Nigeria what Rock Hudson, Magic Johnson, and Arthur Ashe accomplished in America.
Fela's most ardent fans-such as the legions of out-of-school, unemployed "area boys" who deal, steal, and occasionally riot to get a little cash-are often the groups most vulnerable to HIV. They are also the most alienated from society and authority, including doctors. Many area boys refuse to believe Fela died of AIDS, and their response reveals the complex forms that AIDS denial takes in urban Africa.
It also illuminates an impending holocaust. Nigeria's most recent national statistics, issued in 1996, estimate that almost one in 20 adults are infected. That's already perilously high, especially since Nigeria is Africa's most populous nation, home to one in every seven Africans. What if Nigeria's HIV prevalence rises to the level of some East and Southern African countries, where more than a quarter of adults are HIV-positive? Then, warns veteran Nigerian AIDS activist Pearl Nwashili, "what we have seen in the rest of Africa will be child's play."
Yet Nigeria's efforts to fight AIDS remain mired in what Nwashili calls "apathy and denial." Not even the blood supply is safe, because many of the country's numerous private clinics transfuse unscreened blood. Monitoring them is virtually impossible, largely because the once vigorous National AIDS and STD Control Program has been limping along on 40 million naira a year, which is less than half a million U.S. dollars. And the country's official rate of HIV is widely believed to be underestimated, partly because it was calculated with no data whatsoever from Lagos, sub-Saharan Africa's largest metropolis, a cauldron of at least 8 million inhabitants that swells by almost a thousand newcomers every day.
Like so many of Africa's megacities, Lagos is linked with the rest of the country through the extended families of these immigrants, and through the road, rail, sea, and air routes that converge here. Controlling AIDS in Lagos, therefore, is critical to controlling AIDS in Nigeria as a whole. But while only a united, all-out effort can contain Nigeria's epidemic, the country remains gripped by a schizophrenic attitude toward AIDS, epitomized by brothers Olikoye and Fela: on the one hand, a face-the-facts pragmatism; on the other, a denial that is rooted in anti-white, pan-African ideology.
Resistance to the facts of Fela's death reared up almost before his corpse had cooled. "Fela's doctor came to me and said, 'What should I write as the cause of death?' " Olikoye recalls. "And I said, 'What did you find he died of?' She said it would be too terrible to write it-AIDS is such a shame. So I asked her, 'Are you going to forge a death certificate?'" The doctor relented.
The next day, flanked by most of Fela's family, Olikoye staged a press conference, announced that AIDS had killed his brother, and delivered what Fela's daughter Yeni calls "a serious lecture," pointing out that almost 2 million Nigerians were already carrying the AIDS virus and that people needed to confront the crisis.
The announcement certainly jolted some people. There are prostitutes who say that more of their johns started wearing condoms after Olikoye's announcement. But millions-including Fela's youngest son, 16-year-old Seun-don't believe HIV felled their hero. Hanging out in a crowded alley, area boy and staunch Fela fan Bob "Marlboro" Kuforiji says, in a typical comment, "It's just propaganda to say Fela died of AIDS." His logic: "Fela's a very great man, so he couldn't have died of AIDS." Condoms? Marlboro doesn't use them.
Virtually every big city has bands of street toughs, but area boys are a phenomenon unique to Lagos, where they have attained almost mythic status as urban nuisance and criminal menace. They riot to intimidate whole neighborhoods into paying them off, or just to loot. Politicians employ them to attack opponents or create a diversion-but ultimately the area boys answer to no one. This summer, in what the papers dubbed "jungle justice," area boys fought turf battles against rival gangs and against citizen vigilante groups fed up with their crimes and with police impotence. More than 50 people were killed, often burned alive.
Victor Inem, a doctor at Lagos University Teaching Hospital, studied 113 area boys and, though few locals use the term, area girls. Twenty-eight percent tested HIV-positive, an infection rate second only to sex workers. And that was six years ago. There have been virtually no other studies of area boys, but today's infection rate would almost certainly be higher, in part because the area boys act in ways that put themselves and others at risk. More than half of the women in Inem's study had prostituted themselves. Both sexes engaged in "sessions," drug binges that often included orgies. And one way they got cash for drugs and food was to sell their blood to private clinics-a practice that, according to AIDS workers and area boys alike, still continues.
"We saved millions of children with immunizations and child diarrhea treatment," says Olikoye, "but we never did much to plan for their future. They have no jobs, no schooling. They are selling scraps on the street, and they are beyond the reach of anyone."
Except Fela. He took scores of prostitutes and area boys off the streets, giving them a home in his commune, called Kalakuta Republic, and giving himself unmatched street credibility. But more than that, he transfigured their roiling frustration and sense of betrayal into art-their art. Fela's cousin, Wole Soyinka, may have won the Nobel Prize, but Fela, singing in Pidgin, won the devotion of people at the butt of Nigeria's tragic history.
Fela's music linked high-level corruption to the everyday sufferings of Lagos life, from conditions in the city's slums-where, he sang, "dey stay ten-ten in one room" and "sleep inside dustbin"-to the almost allegorical torments of the molue,the sweltering, overcrowded Lagos busses. "Every day my people dey inside bus, 49 sitting 99 standing, dem go pack themselves in like sardines, dem dey faint." These lyrics evoke "images of the slave trade," notes Babatope Babalobi, a member of Journalists Against AIDS who wrote his college thesis on Fela. Area boys say simply, "Fela was talking the truth."
So it is a cruel irony that his downfall was caused by self-deception. The humor in his dismissal of condoms-"After I remove my trouser," he was fond of saying, "why I got to wear trouser for prick?"-has become grotesque as the AIDS epidemic swells into one of the worst tragedies in Africa's history. Fela was risking his own life, but he was also risking the lives of his partners, many of whom were the street girls he took into his home. Fela was often criticized for his views on women-"Woman got no other role than making the man happy," he once said-but HIV armed his attitude with the potential to kill.
Indeed, life at Fela's Kalakuta Republic was a safe-sex educator's nightmare. The air was hazy with marijuana smoke, and hot-Nigerian street gin-flowed freely. Fela's oldest son, Femi, remembers that "the whole compound was dirty," and not one of the area boys who took shelter there "was doing anything constructive."
Femi, who like his dad plays the sax and has a successful band of his own, Positive Force, swore off pot because, he explains, "I can't do what my father did. I have to work more than play." That work ethic, not to mention the notion of no more pot, has made him unpopular with the city toughs. And, Femi comes as close as a son can to blaming his father for colluding in the collective tragedy of the area boys: "They want me to act like my father to support the way they are ruining their lives."
Fela did support the behaviors that help to spread HIV. But perhaps more damaging, he sanctioned an attitude that makes it extremely difficult to change those ways.
Dominating Ojuelegbao Lane in the Surulere district of Lagos is a cement apartment block, laundry hanging off the balconies, several windows broken. Below it cluster small cement shacks with corrugated iron roofs. Stagnant water sits in the open sewers, and chickens peck among the garbage, squawking and fluttering to avoid the running, all-but-naked children. Lounging shirtless in an alley, area boy Thomas "Boy-O-Boy" Edem, who used to live in Fela's commune, insists he doesn't steal. "That's why I deal in this," he says, holding up a plastic bag bulging with marijuana. His other revenue stream comes from the nearby bus stop. During the evening rush hour Boy-O-Boy darts through the chaos, collecting hisdash,slang for a payoff. Like mafia protection money, the payment keeps the area boys from attacking the busses.
No one is exempt from such extortion, certainly not AIDS workers, who are perceived as being rich because they are funded by international donor agencies. Onemtein Amadi of the Nigerian Youth AIDS Programme (NYAP) recalls a soccer league, organized by her agency, in which the requirement for participation was taking an AIDS course and competing in halftime AIDS quizzes. Sixteen teams totaling more than 400 players signed up, but NYAP hadn't settled with the area boys. "They would move onto the field and disrupt the match," she recalls. "They'd say, 'If you don't give us money and gin, the match won't go on.'" NYAP ended up hiring the area boys as security guards, a job they relished.
This is the simplest form of what Amadi calls "the money syndrome," a corrosive blend of cynicism and mistrust that comes from a culture where corruption is king and poverty forces hard deals. Elvira Obike, program officer for the Lagos chapter of The Society of Women against AIDS in Africa, estimates that "more than 70 percent of female university students engage in sex for money to pay school fees," almost always with older sugar daddies. In a culture where so many are prostituting themselves, and where leaders steal millions and sometimes billions of dollars, everyone has an angle. And Fela stoked this cynicism.
While it was always clear what he was against, no one could say precisely what Fela was for. He was pure dissident. His brother Olikoye brought primary care to Nigeria's poor, but Fela criticized him for serving in a military government. Fela's rejection of virtually everything white-including Western medicine-was fundamentally reactionary, a wholesale backlash against white rule. It may have been fatal, but in urban Africa, it is a common response. In fact, it is one of colonialism's legacies.
Fela did espouse notions of freedom and equality and African unity, but they were nebulous, little more than slogans. Meanwhile, he ruled his commune like a king, meting out harsh beatings to errant area boys and indulging his legendary appetite for marijuana and sex. Fela made it seem that all it took to be a revolutionary was to pursue one's own gratification and blame the powers that be.
Such cynicism undermines AIDS education. As NYAP's Edem Effiong explains, "people might not believe accurate information about AIDS, because they might not trust the source." Indeed, it would be hard to imagine a source more credible than Olikoye, one of the very few government ministers who has retained a good reputation. It doesn't matter. Marlboro is only one of many who thinks Olikoye was lying about the cause of Fela's death. Asked why Olikoye would claim his own brother died of AIDS when he hadn't, Marlboro replies, "Nigerians will do anything because of money, even sell our mother and father." Olikoye was paid off, people say, by the World Bank or the Americans.
It's also common to hear blanket dismissals of Western medicine. A bus conductor, who loved Fela's music and went to his funeral, is sure Feladidn't die of AIDS "because the man took care of himself. He used traditional, tribal ways." Does he believe AIDS is real? "I'm hearing this, but I don't believe it." A teenager, dressed in his school uniform, interjects to say he's read a pamphlet saying that AIDS was invented by the Americans because they want to dominate the world.
Some people, including Fela's daughter, think the government should have used her father's death to launch an AIDS program. But others think that would have backfired. "If the government had tried using Fela, there would have been trouble," says NYAP's Effiong. She thinks it would only have hardened the refusal to believe that AIDS is real.
AIDS came very late to Nigeria. The first case was reported in 1986, four years after the disease was first identified in Africa, and even then, study after study showed the virus was not widespread. While this gave Nigeria time, it also played into the hands of those who denied the existence or gravity of AIDS, because almost nobody was dying. Even now, those who are reaching the last stages of the disease were infected six to 10 years ago, so they are relatively few-unlike malaria, a clear and present killer. So activists such as Nwashili of STOPAIDS have toiled at "trying to make people believe there is AIDS when there is no AIDS."
There are signs of hope. Nigeria's new president may have a checkered past, but he has almost tripled the AIDS Programme budget, committed his government to dealing with the epidemic-something his corrupt predecessors failed to do-and called in international assistance. Olikoye supported the new president's election (even though his police raided Fela's home in 1977 and inflicted injuries that killed their mother) because Obasanjo "has a wicked streak, which we need in Nigeria." Olikoye is also leading an energetic advocacy effort. And at the Iddo motor park, a vast and crowded bustling truck stop, STOPAIDS peer educator Robert Eselojor is optimistic. "Now the drivers aren't taking women, or they are using condoms."
But that's not how the younger guys hanging out at the motor park tell it. To the hearty laughter of everyone around, a burly driver says he doesn't wear condoms because "if I put it on, my prick can't rise." Another man in the group blames AIDS on "irresponsible girls" and waves his arm in the direction of the brothels. "The only risk is around them," he insists. "A responsible woman cannot get AIDS."
At the base of the Carter Bridge in the crowded, crime-ridden Idumota area, a group of women hawks petty merchandise-cigarettes, soap, fruit. Do their partners use condoms? They just laugh. "My husband," says one, "can't use a condom because he's not a eunuch." Do their husbands have girlfriends on the side? "Two that I know of," answers the first. "My husband is very religious so he has none," says a third woman, wearing a headscarf. "But," she adds, "my boyfriend has had up to 30 other girls."
At the pink-painted Royal Crown Hotel, a sex worker who gives her name as Tina, says many johns offer extra money for unsheathed sex. Trained as a peer educator by the Lagos chapter of the Society of Women against AIDS in Africa, Tina insists she doesn't accept those offers. But, she adds, "I can't lie. Some of the girls, especially the younger ones, if they see 1000 naira, they can't leave it." So how many sex workers use a condom every time? Among the older ones, estimates Tina, six out of 10. But among the younger ones, only two or three out of 10.
Fela wouldn't have solved Nigeria's AIDS problem. But like the Congo's wildly popular Franco Luambo or Uganda's Philly Lutaya, both of whom recorded songs warning about AIDS shortly before the disease killed them, Fela could have made every Nigerian feel that they knew someone with HIV, thus bypassing the process of waiting for the death toll to scare people into taking precautions. As it is, Olikoye believes his brother symbolizes Nigeria's denial and, he says, "I don't know how we will get over the barrier of convincing people that HIV is real."
Over in the Lagos slum of Makoko, where fishing people have constructed a watery shantytown on stilts, 21-year-old Frank Ogbonnaya says he's slept with four women over the last year, and while he maintains that he usually uses condoms with his casual partners, he never uses them with his steady girlfriend. AIDS, he says, just isn't a big concern. Does he know anyone with the disease? "I don't know anyone," he replies, "unless you count Fela. And I don't believe Fela died of AIDS."
Research assistance: Reetpaul Rana, Jason Schwartzberg
© 1999, The Village Voice
Africa Responds: Bereft of medicine and money, traditional cultures mobilize in a new way.
By Mark Schoofs
INSIZA DISTRICT, ZIMBABWE -- Wilson was the hardest. He had been such a charmer, a flirt even, but then AIDS dulled his sparkle and confined him to his bed. That's when Sibongile Ndlovu increased her visits to every day, bringing him food and caring for his bedsores, which had bloomed into an affliction worthy of Job. 'The whole skin on his side was coming off,' she says, and it filled his hut with the smell of sickness. She convinced the clinic to give her medicine, and she rubbed the ointment on his raw bedsores every day for the two months until he died.
Four years have passed, but despite that ordeal Ndlovu is still caring for patients. How many has she assisted? "Forty-two," she says, checking a tattered ledger with neat, handscripted notes. How many have died? "Sixteen."
Ndlovu is not a nurse or health-care professional of any kind. She is a peasant farmer who volunteers with the Insiza Godlwayo AIDS Council (IGAC). Her family income is about 300 Zimbabwe dollars a month, not even 10 U.S. dollars. Three days a week--more if one of her patients is severely ill--she stops by the homes of the sick, washing their bedclothes, fetching water, tilling the little plots of land on which these villagers all survive, even parting with some of her meager income to purchase things her patients need. Wilson had a craving for oranges, which are luxury items here. But she bought them.
Africa's response to AIDS is often depicted to be as dysfunctional as its economy, just another example of what some AIDS workers call "Afro-pessimism"--only bad news coming out of Africa. It is true that just a handful of African governments have mobilized a response remotely commensurate with the magnitude of the epidemic, which has already slashed life expectancy by as much as 20 years in some countries. AIDS stigma has also made many ordinary people shy away from dealing with the epidemic. "I have found the most unacceptable denial and apathy in Africa," says Elhadj Sy, who heads the southern and eastern Africa team for UNAIDS. "But on the other hand, the most incredible responses to HIV have been developed here. We live in this contradiction of extremes."
Nowhere are these extremes more pronounced than in Zimbabwe, the former Rhodesia, which whites ruled until 1980. When it finally gained independence, Zimbabwe was the South Africa of its day--relatively prosperous, with no foreign debt, and a currency stronger than the U.S. dollar. Now, the economy is in free-fall, and a quarter of adults in the prime of life, aged 15 to 49, are infected with HIV. The virus is killing more than 65,000 people a year.
Yet the director of Zimbabwe's National AIDS Coordination Programme, Everisto Marowa, says that government spending on AIDS prevention has, in real terms, "certainly not increased and probably declined" over the last five years. Last month, the government announced a special AIDS tax, but even AIDS workers criticized the idea because the government provided no plans on how it would spend the money. Corruption and mismanagement are rife in Zimbabwe, and previous special levies have disappeared with no accounting.
Meanwhile, the government admits it is spending more than 70 times the budget of the AIDS Programme on its unpopular military intervention in the Democratic Republic of the Congo, though independent observers estimate the war costs many times more than that. Few citizens understand why a third of the army has been deployed in the civil war of a country that does not even border their own, especially when inflation and unemployment in Zimbabwe both exceed 50 percent. But many suspect a few may be profiteering: The head of Zimbabwe's army is a director of one company that has mining rights to the mineral-rich Congo and of another that has trucking rights.
Yet below the radar of government, in individual communities there are astonishingly vigorous responses to AIDS. "In every province we have member organizations," says Thembeni Mahlangu, director of the Zimbabwe AIDS Network. "They were often started by a church or NGO [nongovernmental organization] and sometimes just by individuals." For example, Auxilia Chimusoro founded Zimbabwe's first AIDS support group, and then tirelessly traveled the country launching more. By the time she died in 1998, Chimusoro had started more than 50 support groups, most in poor rural communities. In the capital, Harare, the Musasa Project works with battered women, helping them break free of partners who often force them to have sex, almost always without a condom.
IGAC, the group that helped Wilson, specializes in home-based care and orphan support, and it has recently launched a youth prevention campaign. The leadership of most AIDS programs "is composed of professionals," says Lucia Malemane, a nurse with Zimbabwe's Matabeleland AIDS Council, who taught Insiza about AIDS. "But with IGAC, it's just ordinary peasant farmers."
Heroic as these efforts may be, they are tinged with poignancy--and not just because the government, which could knit these isolated efforts into a powerful national response, has shirked its duty. Most community programs lack any but the most basic medicines. Certainly they cannot afford the expensive regimens that have reduced the AIDS death rate in wealthy countries. Without effective drugs, home-based care can seem like little more than home-based death. With the disease mowing down so many people, and with poverty making volunteering so burdensome, it remains to be seen whether such homespun efforts can endure for the decades that may well pass before an AIDS vaccine is developed.
But for the moment, thousands of ordinary Africans are defying all odds to care for their sick, raise their orphans, and try to slow the virus's spread. If governments finally mobilize against this disease, they will find some of the best and most energetic AIDS strategies right under their noses.
And they might find something else. Traditionally, Africans relied on extended families and tight communities to weather adversity, but even before AIDS, colonialism, urbanization, and social atomization had weakened the sinews of African society. The epidemic threatens to snap them--but it could also have the opposite effect. "AIDS is horrible, but in times of great stress societies can either fall apart or come together," says Alan Whiteside, who studies the demographic impact of AIDS at South Africa's University of Natal. Noting how the American gay community built powerful institutions and a stronger culture, he says that "IGAC, with a little help, could be an example of building civil society in Africa."
There are few places where the difficulties of responding to AIDS are more daunting than here in Insiza, a flat, dry district of southern Zimbabwe punctuated by dramatic rock formations and dotted with imizi, rural homesteads composed of neatly ordered round huts. Villagers here are so poor that most don't bury their dead in coffins, but merely wrap them in blankets. At one funeral, near the start of Zimbabwe's winter, the grieving family was so destitute that, after lowering the body into the grave, they started removing the blanket from the corpse so their children wouldn't go cold. Stricken with pity and horror, IGAC's coordinator Japhet Gwebu gave the family a blanket.
Only about half of Insiza's population can read and write, and what schools there are often lack even furniture, forcing students to work on the floor. The district hospital is supposed to have five doctors, but on a recent visit, it had only one, and the operating theater was closed because the hospital had run out of anesthetics. Nurses are also in short supply--but not patients, who have poured in over and above capacity.
Frequent droughts cause starvation. The 1992 drought killed most of the cattle, which means that even though the rains were good this year many prime fields lay untilled because there are no beasts of burden to pull the plows. Nobody, of course, has tractors or automobiles. How many residents have electricity or running water? Fidres Manombe, chief executive officer of the district council, laughs at the question. "Oh, it's negligible," he says.
Back in the late 1980s, when a new disease began causing people to waste into skin-shrouded skeletons, most people in Insiza believed the affliction was caused by witchcraft. Only in 1994 did they learn the medical facts, and immediately a group of elders decided they needed to do something to care for the droves of sick people and the swelling number of orphans. But how to organize the villagers?
Homesteads are scattered far apart, yet throughout the district's 7500 square kilometers--an area larger than Delaware--there is only one paved road. Nobody has telephones. Isaiah Ndlovu, one of IGAC's founders and most active leaders, has never even heard of e-mail, but he sometimes sends messages by relay, villagers passing on his communiqué so that by the end of the day it has traveled across the vast farmland to its intended recipient--if someone hasn't misunderstood the message or forgotten it completely. So to mobilize his community, Ndlovu must visit homesteads one by one, and that's how he keeps the program going, checking in on the volunteers and the dying people they're caring for.
To any destination closer than 10 miles, Ndlovu just walks. When he has to catch the one and only bus that serves his village, the 56-year-old rises at 3:45 a.m. and trudges 45 minutes in the dark to the bus stop, an unmarked patch of grass by the unpaved main road. Delays of eight hours are not uncommon. "But," Ndlovu says, standing in a winter drizzle one morning when the bus was already long past due, "it's better for the bus to be late than you to be late for the bus."
Today, five years after its founding, IGAC has 500 active volunteers and at least another 500 who help out as needed. To put this in perspective, New York's largest AIDS organization, Gay Men's Health Crisis (GMHC), had 500 home-care volunteers in 1994, just before new drugs lowered the death rate. With a budget exceeding $24 million, GMHC rewards its volunteers with parties and other perks. IGAC has an annual budget of less than $17,000, and volunteers, though they are dirt poor, are asked to pay dues. The volunteers also give directly to their patients, bringing tomatoes or soap, candles or ground maize, which Zimbabweans eat at virtually every meal. "It's not every time that we can bring something," explains Kelina Ncube, one of the volunteers. "We just give them some of whatever we have to eat that day."
All this giving takes its toll. "When we started it was easy going," says Ndlovu. "But as we go along, some are starting to say, 'We have contributed too much."' Indeed, at a meeting, one woman asks if she and the other volunteers can be compensated. Some of this may be bellyaching--"we have different characters," says Ndlovu, dryly--but most of the complaints stem from brute poverty. "We have to nurse sick people and handle food for them, so we need to wash with soap," he explains. "But soap is very, very expensive." In Zimbabwe, a bar costs the equivalent of 20 cents.
"In the U.S. you have all these volunteers, but they're never worrying about putting food on the table," says Noerine Kaleeba, who launched Africa's first support group for HIV-positive people, The AIDS Support Organisation of Uganda. To keep volunteers going, Kaleeba says, some African communities have planted a special garden from which only volunteers can harvest, or created a fund that pays the school fees of their children. (Zimbabwe, like most African nations, does not provide free education.)
It is often said that Africans are passive in the face of death and suffering, that life is cheap here. The truth is that life is hard. People are so poor that even when they give a large proportion of their income, as most IGAC volunteers do, the total amounts to only a small sum--so small that even bare-bones efforts are hard to launch and maintain. Groups like IGAC are "isolated and scattered blossoms," as Kaleeba puts it, adding, "I wish this blossom could be turned into a flower garden."
It was Sikhangele Ndiweni's mother who launched IGAC's first attempt to raise money: a communal garden for cultivating and selling vegetables. But the plot was small, so the earnings were, too. Ndiweni's mother never saw IGAC's subsequent ventures; AIDS killed her in March of 1997, and her husband died three months later. As their oldest child, Ndiweni dropped out of school to nurse them--"I had to wash my mother and greet the people who visited her," she says--and now, at 20 years old, she is raising her sister and four brothers. She depends on IGAC for food and school fees, but she is not merely taking. Like her mother, she is helping IGAC raise money.
In addition to her household chores, Ndiweni tends a herd of goats, part of a donation IGAC received from HelpAge, an organization that assists the elderly. The goats, split into small herds and looked after mainly by orphans, are one of IGAC's two main income-generating projects. The other is a grinding mill for maize. The profits get divided up and given to committees throughout the district, who then perform triage, deciding which families in their villages most need blankets, school fees, or emergency rations of food.
Margaret Nkomo, a member of one of IGAC's local committees, says that in her corner of Insiza there are 46 children who have lost at least one parent. About a third of those orphans have no means of support besides IGAC, yet the goats and grinding mill paid for only some of the children's primary school fees. Nkomo and other volunteers covered the rest by dipping into their own shallow pockets. But secondary school costs more, so some older orphans couldn't afford to go.
Ndiweni would love to finish secondary school--she liked it and was a good student. But there is no money, and she has been catapulted into adulthood. Now she has begun making home-care visits, helping others even as she is herself helped. "I can't bring any food," she says, "but I can cook and wash and help in those ways."
Eliot Magunje, an activist in Harare, is not impressed. "It's not home-based care, it's home-based neglect," he charges. Magunje is HIV-positive, and much of his anger springs from the harsh fact that drugs which could prolong his life are too expensive here. But he exposes the central weakness of virtually every home-based care program in Africa: They offer little or no medical treatment. The ointment for Wilson's bedsores was an exception. Usually, says Isaiah Ndlovu, "Our medicine is to pray."
The emotional toll keeps accumulating. Volunteer Moddie Nkomo cared for her sister's son until he died, cleaning him after his frequent diarrhea. Then there was the "very difficult day" last November when Nkomo "was looking in on three people, and they had all died. Even today we buried another," a 35-year-old man. His wife had died last year, and Nkomo had cared for her, too.
Many AIDS workers believe that programs like IGAC cannot last, especially given the lack of government support. AIDS, after all, has slammed into a continent already battered by a terrible history. Driven off the most fertile land, which remains in the hands of mostly white farmers, rural Africans constantly face food shortages. Many men are forced to migrate between the cities where the jobs are, and the homesteads where their extended families live. This oscillation is psychological as well as geographical, because many Africans exist in a limbo between traditional cultures that cannot be resurrected and a Western materialism that can seem empty. A catastrophe on the scale of AIDS could disintegrate these fragile communities.
Yet in Insiza, the opposite is happening. AIDS is definitely straining the community--but that is precisely why many villagers are volunteering. Especially in rural areas, many AIDS volunteers "are not committed to fighting the disease so much as nurturing their community," explains Sy of UNAIDS. "Success or failure shouldn't necessarily be seen in the number of people dying but helping the community stay together."
That's why foreign aid is so fraught. While poverty can be incapacitating, donors often impose their own priorities or undermine the spirit of self-reliance. IGAC is successful because the villagers have mobilized themselves.
Tall, upright Ezekiel Sibanda is the sobuku, or headman, of one of Insiza's villages, and he says IGAC has set a precedent. Women have banded together to weave grass mats and sell them, sharing the profit and giving a little to the needy. Another group is doing the same thing raising chickens, still another has started a garden, and a youth group is making bricks. Such communal endeavors didn't exist before IGAC, Sibanda says. "People were not as giving. IGAC has brought us together."
And it has done so in a manner that harks back to "what our traditional communities used to be," says Marowa of the national AIDS program. Precolonial African civilizations were often organized in smaller, more communitarian units than European nation-states. "Indeed, the most distinctively African contribution to human history," writes John Reader in his highly acclaimed book, Africa: A Biography of the Continent, "has been precisely the civilized art of living fairly peaceably together not in states." As Kaleeba explains, "While the state exists, the primary responsibility lies within my family, neighbors, and community. No one has written that law, but it is passed on and understood."
Traditional African societies tended to be flexible networks where individual gain at the expense of the community was taboo--virtually the opposite of capitalism. This was no utopia, but rather an adaptation to Africa's harsh realities. The continent has always been underpopulated, so communities needed every able body, and needed them to give to the larger society. Africa's communal civilizations, Reader maintains, evolved to ensure "survival in a hostile environment of impoverished soils, fickle climate, hordes of pests, and a more numerous variety of disease-bearing parasites than anywhere else on earth."
IGAC's response to AIDS, then, is a reclamation of the age-old ways that enabled African communities to withstand previous scourges. The selflessness of the volunteers springs from deeply ingrained roles that were weakened but not broken by colonialism. The money-making projects are adaptations of those traditions to the present crisis, as is the frank talk about sex in IGAC's new youth program, which hands out condoms and warns girls away from "sugar daddies."
Still, poverty shadows these people too closely to consider IGAC's future secure. Many of the organization's goats, for example, died in an epidemic of their own; IGAC, of course, couldn't afford medicine to treat them. Another drought could finish off the herd, wither the communal gardens, and sap the community's spirit. And, of course, there is the relentless tide of AIDS.
Isaiah Ndlovu is walking with his volunteers on their way to visit another stricken family. Do the endless deaths make him frustrated or angry? "No," he says, "not at all. We have accepted it and when you accept it, it becomes ordinary life. Okay, death is here. But let's care for the sick and the orphans. To me it's just that simple."
Huddled in blankets in her hut, Tabeth Nkomo knows she and her husband are both dying, knows her aged mother is already too feeble to till the fields, and knows that her four children will soon be orphans. "I'm afraid for my last-born," she says. "He's too small to fetch water and firewood." So the biggest comfort that IGAC gives her is not bringing food or washing her frail body but the way they look after her children, cooking for them and disciplining them when they go astray. "They help when I'm alive," she says, "so I trust they will still help them when I go."
© 1999, The Village Voice
Research intern: Jason Schwartzberg
The Virus, Past and Future: There Are Two AIDS Epidemics--and More May Be Coming
By Mark Schoofs
Franceville, Gabon -- Primatologist Caroline Tutin was boarding a flight from her home in Africa when a baby in toddler clothes and sunbonnet caught her eye. Then she did a "horrendous double-take." The baby was a chimpanzee. The animal's French owners, who lived in equatorial Gabon, were childless and they treated the animal as their baby, even giving it its own room, decorated like a little girl's.
About 10 years ago, Amandine, as they had named the chimp, became ill. Its owners--who insisted on being called its parents--took the animal to Gabon's Centre International de Recherches Medicales, Franceville (CIRMF), a world-class primate center. The scientists never discovered what was ailing the ape, but they did find another connection to human beings besides Amandine's wardrobe and the more than 98 percent of DNA that chimps and people have in common. Amandine was the first chimpanzee found to be infected with SIV, the simian equivalent of HIV.
Because of the genetic similarity between the chimp and human viruses, it appeared that HIV had originated in chimpanzees--a theory all but confirmed in February of this year by University of Alabama researcher Beatrice Hahn, who appears to have identified the exact chimpanzee subspecies--Pan troglodytes troglodytes--that harbors HIV's mother virus.
This finding is no mere historical anomaly. There is strong evidence that the virus has jumped from animals to humans on at least seven occasions. Unfortunately, the way this critically important science has been reported is undermining its credibility in Africa, the very place where most new variants of HIV are arising.
When Hahn presented her findings to about 5000 AIDS researchers in Chicago, she emphasized how the virus could have passed from apes to humans through the hunting and butchering of chimpanzees--a common practice that has provided protein for rainforest Africans over many centuries. But the hunting of "bush meat" has become commercialized, pushing the apes toward extinction. To emphasize her point, Hahn showed slides of slaughtered chimps. The normally staid scientific audience groaned in disgust, and it wasn't long before eating chimps was compared to cannibalism in The New York Times Magazine.
To many Africans, this was one more sign that nothing about Western thinking could be trusted, including science. Based on the media reports, many Africans dismissed the research as just another tool to denigrate their culture. "In France you eat frogs and oysters, which to us is very strange," says Léopold Zekeng, director of Cameroon's national HIV research program. Eating monkeys and apes, he says, "is part of our culture." Portraying it as barbaric could backfire, Zekeng warns: "Politicians could close up and say, 'We don't want you to do research because you might come out with findings that lead to more discrimination.' "
In fact, research into the origin of AIDS could help save Africans and everyone else, because the virus is still emerging: still mutating and moving from apes and monkeys into humans.
Zekeng vividly remembers the 26-year-old patient he calls Miss A. In 1991, she came to his lab in Cameroon's capital, Yaoundé, with "all the symptoms of AIDS--diarrhea, fever, weight loss, swollen lymph nodes. I was 200 percent sure she would test HIV-positive." But she didn't. Zekeng took her blood to a sophisticated German lab and discovered that the woman was infected with a new, previously undocumented variant of HIV called Group O. It is so genetically distinct that scientists believe it didn't evolve from the main strains of HIV, but represents a separate transmission from chimps to humans. Eighteen months after Miss A came to Zekeng's office, the virus had killed her.
Just last year, another team of researchers found a variant of HIV, Group N, that is more closely related to the chimp virus than any yet found in humans. As with Group O, scientists say it entered humans through its own cross-species transmission. And it, too, eluded conventional blood tests.
"I still see patients with the clinical symptoms of AIDS, yet they turn out HIV-negative using all assays," says Zekeng.
"The AIDS viruses are not over," agrees Preston A. Marx, another expert in the evolution of HIV, who works at the Aaron Diamond AIDS Research Center. "We have the potential for more to come. It's possible we could develop an AIDS vaccine and have viruses that the vaccine doesn't work against. This isn't science fiction. New viruses are still emerging, viruses that can cause AIDS."
In the mild rainforest evening, along a red-dirt logging road in southern Cameroon, the palm wine flows freely as a group of villagers talk around an open fire. The men all hunt, taking whatever the forest yields, from the small antelope called duikers to the great apes. "Our parents were hunters, and their parents," says Gerard Ampoh Mentsilé.
But hunting has changed. In addition to spears and snares, the hunters now use guns, some homemade from truck axles. Bullets are expensive, so they get them from poachers who sell the bush meat in cities. Sometimes bullets constitute the hunters' only payment. When they get paid in cash, they use themoney to buy soap or fuel for their gas lanterns. No one here has electricity.
They also lack basic hygienic protection such as gloves. When animals are butchered and dressed, blood spatters on the hunters' skin. Scientists speculate that the virus could pass into them through cuts or sores. But the hunters drinking palm wine are not convinced. "We've been eating chimps and monkeys for years and years, and never had anyone get sick from AIDS," says Lazare Ampomadjimi. "So it can't be true."
Everywhere, people have theories on how AIDS began. "The average Cameroonian will tell you it all started in L.A. with the gay community," says Zekeng, "or they'll tell you it's a virus Americans produced for biological warfare." In Senegal, Sara Sagne, the leader of a traditional healing cooperative, offers probably the most poetic theory. He believes that after diseased dogs urinate, a flame rises that chars the earth and leaves a foul stench. A person who smells the odor can get AIDS. But this is no more fanciful than University of California professor Peter Duesberg's idea that AIDS is not caused by HIV but by drug abuse, and even by the AIDS drug AZT.
In fact, the same methodology that helped scientists determine that the flu virus comes from pigs and ducks has convinced most of them that HIV comes from chimpanzees. Says Zekeng: "When I look at the phylogenetic analysis"--a comparison of DNA that reveals how closely related organisms are--"there's no doubt about it." The human and chimp AIDS viruses, he says, "really cluster together."
Another reason to believe that the virus originated in Africa is that the continent is home to a greater variety of HIV strains than anywhere else. An organism's greatest genetic diversity generally lies in its home region, since strains that leave the motherland represent only a fraction of the whole, just one or two lineages. Then, too, chimpanzees live in the Central African region where the first AIDS cases were found. Finally, chimps appear not to get sick from their strain of SIV, suggesting that they and their virus have co-evolved. (Hahn is trying to crack the mystery of why infected chimps stay healthy, which could lead to treatments for people.)
Yet, sensitive from centuries of white stereotypes, many Africans view the theory that HIV came from apes as just another smear against "the dark continent." Kenyan president Daniel arap Moi denounced the out-of-Africa theory as "a new form of hate campaign," according to Laurie Garrett's book The Coming Plague. Earlier this year, Zekeng refused to have his picture taken by a New York daily because "I could see their front page covered with monkeys." He has another fear: "journalists who point their camera and say, 'These black Africans are the ones who originated HIV.' Now, let's imagine you and I are neighbors--what will be your reaction after seeing that show? If my child comes over to play with yours? How will you treat him? It feeds into racism."
Many ordinary Africans point out that the disease was first found in white gay men half a world away, so how could Africa be the source? But given the long lag between HIV infection and disease, the ease of international travel, and the industrialized world's medical surveillance system, it is perfectly plausible that HIV could have first come to attention far from its source. Edward Mbidde, a leading Ugandan AIDS researcher, says flatly, "It's not bigoted to say the virus originated in Africa."
Yet the way the theory gets communicated can be shockingly racist. Peter Piot, now director of the United Nations AIDS program, UNAIDS, remembers the first world AIDS conference in 1985. There were only three African scientists, all from French-speaking Zaire, and Piot was their translator. The theory that HIV had emerged from simians was announced at the conference, and an American reporter rushed up to the African scientists, asking, "Is it true that Africans have sex with monkeys?" Piot gleefully translated the answer: "No, but I have heard that Americans have sex with dogs."
Today, it is the insinuation of cannibalism that contaminates the science. In the most recent media flurry on HIV's origin, a major player was Swiss photographer and eco-activist Karl Ammann. Eleven years ago Ammann bought a baby chimp from a hunter who had killed its mother. Childless, Ammann says the chimp aroused his "fathering instinct," and today the animal sleeps together with him and his wife. A former hotel marketing director, Ammann has been trying to spotlight how the bush-meat business is wiping out the great apes. Then he heard about Hahn's research. Sensing a golden opportunity, he provided her with his deliberately shocking photographs that would make her audience groan with disgust.
In his home in Kenya--a 15-acre estate staffed by black servants--Ammann all but blames Africans for spawning AIDS. Explaining his media strategy, he says, "The average Westerner hears so much about Africa's problems, they're sick and tired of it: 'So a bunch of Africans eat a bunch of monkeys, why should I care?' But if that particular practice has brought him AIDS, he has to now change his lifestyle. Because of the lifestyle in Africa of people eating monkeys he has to now wear a condom."
Cameroonian scientist Judith Torimiro was studying at the London School of Hygiene and Tropical Medicine when Hahn's research hit the news, and she remembers a discussion among her fellow students. "They were talking about possible transmission when hunters butcher the meat, but then someone asked, 'What about eating?' And the next question was, 'Do they cook the meat?' 'Yes, of course,' I said. 'And I eat it. My mother used to make it.' " She pauses and, in an anguished voice, adds, "How could they ask if we cook the meat?"
The Italians eat carpaccio and the Japanese sushi, so the question was not necessarily racist. But given the continent's history, the question raises African suspicions. Those turn to hackles when Ammann makes statements such as "The colonial powers and the missionaries had managed to wipe out cannibalism. When do we start on 98.4 percent cannibalism?"
Such inflammatory rhetoric discredits AIDS science in the minds of many Africans. After all, if whites think eating animals is cannibalism and that Africans have sex with monkeys, how can anything they say be true?
Roy Mugerwa is the principal investigator of Africa's first AIDS vaccine trial. Even though the vaccine had already been tried in Europe and America, Mugerwa had to push for more than three years to launch the trial, and even had to appear before Parliament. He recalls that a common argument was: "White people say AIDS originated here, and now they're bringing this vaccine, which could make it worse." As the AIDS-vaccine debate was unfolding, the government announced an effort to eradicate polio from Uganda. In the cauldron of suspicion and fear, a radio broadcaster announced that the polio vaccine might be contaminated with live HIV. As a result, thousands of children were not vaccinated, leaving them vulnerable to being crippled. "Why," Mugerwa asks, "does the false tend to be more easily believed than the true?"
No one knows how often aids viruses leap the species barrier, but when they do, what often transpires is what happened to Subject 11008, as she is known in the scientific literature. A 52-year-old woman living in Sierra Leone who eked out a living by farming, Subject 11008 was one of 9300 people whom Marx screened for a virus called HIV-2.
A little-known fact is that there are two separate AIDS epidemics. The major one--which has killed more than 16 million people, according to figures released this week--is caused by HIV-1. But there is another AIDS epidemic, much smaller and concentrated in West Africa, caused by HIV-2, a less virulent and less transmissible virus that, nonetheless, can kill. While HIV-1 almost certainly comes from chimpanzees, HIV-2 comes from the sooty mangabey monkey.
Subject 11008 tested positive for antibodies to HIV-2. But when Marx examined her virus, he found that it was quite distinct from any other known HIV-2, though still clearly within the family. It was what virologists call a different "subtype" or "clade," from the Greek for "branch." A "strain" generally indicates a small variation in the genetic code of viruses--an HIV-positive person usually has several strains in his or her body--but a subtype or clade is genetically much different. Scientists have identified 11 subtypes in the main group of HIV-1 and six subtypes of HIV-2. Subject 11008's virus was labeled subtype F. To this day, it has never been found in any other person.
What's more, subtype F is so genetically distinct that it very likely did not evolve from one of the common subtypes but crossed into humans, quite possibly into Subject 11008, who said she ate sooty mangabeys. "It's an example of a crossover virus that didn't get the help that it needs to become an epidemic," says Marx.
The origin of a virus and the origin of an epidemic are different. The first is purely biological; the other is both biological and social.
Viruses are parasites; they replicate only by hijacking the machinery of cells. So a virus that jumps species must must be able to operate in cells that are biologically different from those of its original host. If it can't replicate efficiently, it won't be able to spread from one person to another.
Many viruses can't. Hahn and renowned AIDS researcher David Ho studied another person infected with a unique subtype of HIV-2. That patient never exhibited symptoms; in fact, researchers were only able to extract fragments of the virus, footprints of its failed attempt to survive in humans.
But even if a virus can replicate efficiently, it might not spark an epidemic. In 1976, a Norwegian sailor who had been in West Africa died of a mysterious disease. His wife and one of his three children also succumbed, both with shattered immune systems. "Now, the Norwegians are very well organized," says Francois Simon, a French researcher who studies HIV's diver-sity, "so they kept tissue samples." Those samples tested positive for HIV-1; the Norwegian sailor is Europe's first known case of AIDS.
Yet despite the fact that his virus was obviously capable of spreading, it died with his wife and child. The viral subtypes that have terrorized the world are genetically very different from the sailor's virus. And yet his HIV was the same very rare variant that turned up more than a quarter century later in Zekeng's 26-year-old Cameroonian woman: Group O. In other words, it was a tiny, sputtering epidemic all its own. In parts of Cameroon, it now accounts for 5 percent of all HIV-1 infections.
AIDS viruses have probably existed in many different animals for thousands of years, perhaps longer. Cows have been found with bovine immunodeficiency virus (BIV), while feline immunodeficiency virus (FIV) infects house cats, lions, cheetahs, and North American pumas. Many species of monkeys have now been found carrying SIV. (The fact that the virus is in so many simian species strongly suggests that it has circulated among them for a long time, whereas HIV only entered large human populations in the 1970s. That's one reason scientists are convinced the virus went from simians to humans, and not the other way around.) "The reservoir" of animal AIDS viruses, says Simon, "is unlimited."
So if such a vast ocean of immunodeficiency viruses has long existed, why did an epidemic happen only now? Why not during the slave trade, when millions of Africans were taken from the areas where both HIV-1 and HIV-2 originated? Here was a massive mixing of peoples, and the slaves were often raped, giving the virus ample opportunity to spread. And yet, no epidemic flared up--or if one did, it was small, flickering out like the virus in the Norwegian sailor's family. On the other hand, two major AIDS epidemics--not to mention the micro-epidemic of Group O--have arisen in the past 70 years. This is what obsesses Marx: "Something that has to do with the 20th century has changed the ecology between SIV and HIV and has allowed these epidemics to occur. And we don't understand what that is."
A new book, The River by Edward Hooper, argues that the oral polio vaccine introduced SIV into humans, because some batches of the vaccine may have been grown in the kidneys of SIV-infected chimpanzees. "Plausible but improbable," says Ho. The chimps in that area are the wrong subspecies, and Los Alamos National Laboratory researcher Bette Korber will soon release findings that HIV very likely evolved into its modern form decades before the polio vaccine was invented. (Still, the remaining stock of the vaccine batches Hooper implicates will soon be tested.)
A more plausible idea is that blood transfusions and hypodermic needles--which were often reused in Africa without being sterilized--boosted the evolution and spread of emerging HIVs, by giving these viruses more chances to adapt to human biology. And, of course, once the viruses had adapted, needles would help them spread, as they have among IV drug users throughout America.
But needles and transfusions probably aren't the whole story. After all, traditional African healers reuse blades to make medicinal incisions in their patients, and elders reuse knives for ritual scarification. What allowed a crossover virus to explode into an epidemic is almost certainly the cultural upheaval that has shaken Africa. Cameroon, a country smaller than Spain, has more than 200 indigenous languages. After World War I, colonial rule imposed just two national languages--English and French--permitting people who would never have intermarried, or even interacted, to do so. Roads, railways, and air travel allowed people to move and mingle more easily than ever before. And urbanization gathered huge numbers of people in one place, where poverty and the breakdown of traditional cultures led to industrial-scale prostitution. Early in the epidemic, it was noted that HIV cases clustered in the towns along Africa's trucking routes, because truck drivers frequented prostitutes.
Marx wants to understand as much as he can about the emergence of HIV, biologically and socially, in hopes of preventing the emergence of new viruses. Indeed, new microbes have already arisen. "Hepatitis C, there's no good explanation for the emergence of that virus," Marx says. "Where'd it come from?"
Where did viruses come from, period? HIV is a retrovirus, which copies its genetic code onto the DNA of its host. So perhaps, says Robert Gallo, co-discoverer of HIV, the virus started out as a kind of genetic messenger, transporting key segments of DNA among life's early organisms. "Did viruses play a role in evolution, perhaps a role in speciation or in embryonic life? Or did they start out as junk DNA with no purpose? What the fuck was their role? We don't know."
While HIV's history is fascinating, THE more urgent question concerns its future. The Hollywood scenario is that a deadlier or more transmissible AIDS "supervirus" might arise. "Unlikely," says Simon. Many scientists believe that it is in the best interest of a virus not to kill its host, so the virus may evolve into more benign strains. But it's also in the best interest of the virus to become more transmissible, in which case it doesn't matter if the virus kills its host because it will live on by spreading into new patients. Still, Simon had to screen many thousands of blood samples to find just five cases of the newest HIV-1 variant, Group N. Clearly, new crossover viruses are rare.
But they do occur, and even if they are not more virulent, they still pose problems. For one thing, they might escape detection on tests and so pass into the blood supply. They also might be able to evade drugs or a vaccine. Already, Simon and colleagues found that one HIV variant, subtype G, is resistant to at least two of the powerful protease inhibitors that have given patients in the West a new lease on life. Indeed, a "signature" of this subtype is a mutation which renders the drugs less effective.
HIV is amazingly protean, averaging one alteration of its genetic code every time it infects a new cell, which it does millions of times each day in each patient. The math is dizzying. With tens of millions of people infected globally, HIV is probably changing every letter in its genetic code many times every day.
But HIV can leap ahead of even its swift pace of mutation by "recombination." If a person gets infected with two separate strains, then through a kind of viral sex those strains can mix their genetic material to form a hybrid strain. Through recombination, a virus can instantly and radically transform itself. Several of HIV's subtypes were formed through this process.
That's a reason to study the origin of HIV. Some researchers envision a science of emerging microbes that could short-circuit viral evolution and protect humans. But for the moment, recombination is a reason to worry about new types of HIV entering human beings: the greater the variety of strains, the greater the chance that they will reshuffle their parts into a more dangerous subtype. "There is genetic engineering going on in nature," says Piot of UNAIDS. "The virus is experimenting with itself."
"The most striking case I have seen in the last six months," says Zekeng, "was a 45-year-old man sent to me from the TB unit. He had chest problems but not TB. He had lost weight. He had KS"--an HIV-related cancer--"on his ankle. And he had a persistent fever." In short, a classic AIDS case. "Yet he--repeatedly--tested negative on at least six different screening tests." Twice, Zekeng has sent this man's blood to a state-of-the-art laboratory in Germany, but no virus has been detected. "Is it going to be HIV-3?" asks Zekeng. "I don't know."
Research interns: Tien-Shun Lee, Jason Schwartzberg
© 1999, The Village Voice
Death and the Second Sex
By Mark Schoofs
Harare, Zimbabwe and Nigeri Village, Kenya -- Sipewe Mhakeni used herbs from the Mugugudhu tree. After grinding the stem and leaf, she would mix just a pinch of the sand-colored powder with water, wrap it in a bit of nylon stocking, and insert it into her vagina for 10 to 15 minutes. The herbs swell the soft tissues of the vagina, make it hot, and dry it out. That made sex "very painful," says Mhakeni. But, she adds, "Our African husbands enjoy sex with a dry vagina."
Many women concur that dry sex, as this practice is called, hurts. Yet it is common throughout southern Africa, where the AIDS epidemic is worse than anywhere in the world. Researchers conducting a study in Zimbabwe, where Mhakeni lives, had trouble finding a control group of women who did not engage in some form of the practice. Some women dry out their vaginas withmutendo wegudo--soil with baboon urine--that they obtain from traditional healers, while others use detergents, salt, cotton, or shredded newspaper. Research shows that dry sex causes vaginal lacerations and suppresses the vagina's natural bacteria, both of which increase the likelihood of HIV infection. And some AIDS workers believe the extra friction makes condoms tear more easily.
Dry sex is not the only way African women subordinate their sexual safety to men's pleasure. In a few cultures, a woman's vagina is kept tight by sewing it almost shut. But in most African societies, the methods are subtler: Girls are socialized to yield sexual decision-making to men. Prisca Mhlolo is in charge of counseling at The Centre, a large organization for HIV-positive Zimbabweans. "You're not even allowed to say, 'Can we have sex?' " she notes. "So it's very hard to bring up condoms."
Mhlolo speaks from both professional and personal experience. She is HIV-positive, infected by her late husband. As AIDS eroded his immune system, he suffered from herpes, which broke into open sores on his penis. Mhlolo suggested condoms, "but he said, 'Now that I'm sick you have gotten yourself a boyfriend.' It was very hard."
Many people balk at discussing the sexual practices of particular cultures because the issue is too sensitive--and, in Africa, too racially charged. Whites have caricatured African sexuality for centuries, casting black men as sexual beasts, and some whites still whisper that this is why HIV is running rampant among Africans. But such stereotypes miss the point, which is not the libido itself but the culture in which it finds expression. HIV spread through the American gay community because having anal sex with many partners was common, and the virus infiltrated the Thai army because soldiers routinely patronized prostitutes. In Bombay, where AIDS has exploded, slum lords demand payment in sex. I.V. drug use aside, male sexual privilege is what drives the epidemic.
Studies from many different cultures show that men average more partners than women do and have more sex outside marriage. Because a man ejaculates into a woman, men are more likely to transmit the virus, whereas women are more likely to contract HIV without passing it on. So far, males have outnumbered females in HIV cases, partly because having more partners means more chances to encounter the virus. But new figures show that in sub-Saharan Africa, 55 percent of all infected adults are women.
Of course, Africa contains thousands of cultures, some of which have strict sexual codes. But common to many sub-Saharan societies are the gender roles epitomized by dry sex: Women are unable to negotiate sex, and so must risk infection to please the man. In fact, there are very few female checks and balances on male behavior. This stark inequality "is part of our culture," Mhlolo says, "and our culture is part of why HIV is spreading."
Africa today is far removed from its traditional, tightly knit communities that did constrain men, mostly to their wives. Africa is also very different from the West, where women exercise a relatively large degree of power. Many parts of contemporary Africa are suspended in a limbo that combines the worst of both worlds, and HIV has exploited this. For example, men retain the mindset of polygamy, but now have many partners through commercial sex or "sugar daddy" relationships that lack the social cohesion of traditional marriages.
But AIDS is forcing African culture to change--and because the virus in Africa is spread mainly through heterosexual sex, the epidemic's largest social transformation may well be in the relations between women and men. Women could emerge from the epidemic with more power, and there is a strong push to make that happen. But there is also a backlash, a call to reimpose restrictions on women in the name of strengthening traditional African cultures and curtailing AIDS.
The battles are being fought not only over sexual practices, but also over larger economic and social forces that subordinate women and facilitate the spread of HIV. The World Bank reports that illiteracy rates among women south of the Sahara are almost 50 percent higher than among men. Many African girls cannot attend school because they are assigned time-consuming chores such as fetching water and firewood. Indeed, African women work longer than men--and harder. Studies from Ghana and Tanzania show that rural women transport four times as much as men, often carrying the loads on their head, and other studies show that women do up to 90 percent of hoeing and weeding. Yet they make far less money than men and rarely own property. In Cameroon, for example, fewer than 10 percent of all land certificates belong to women.
African women also lack authority. Just this year, Zimbabwe's Supreme Court ruled that women have no more status or rights in the family than a "junior male"--usually an adolescent. If a wife wants to take a trip, explains Thoko Matshe, director of the Women's Resource Center in the capital Harare, "she has to sit her husband down, get the guy in a good mood, and ask him if she can go. If you cannot negotiate that, you cannot negotiate sex."
In most sub-Saharan traditional cultures, men pay for their wives, which gives them license to dominate the relationship. The very concept of marital rape doesn't exist in most of Africa, and even the aunties--traditional marriage counselors for many young African wives--tell women that they cannot refuse sex with their husbands. Thoko Ngwenya of Zimbabwe's Musasa Project, which fights domestic violence, explains the mindset: "Once a man has paid lobola"--the word for dowry in several southern African languages--"they are not forcing their wife to have sex. It's just their right."
The sexual subservience of women is inculcated long before adulthood. For example, traditional Shona girls are taught to pull the lips of their labia to lengthen them so that men can play with them during foreplay, yet women are not supposed to touch their husband's penis. Indeed, in some cultures, female circumcision removes the most sexually sensitive part of a woman's body--her clitoris. "For women," says Caroline Maposhere of Zimbabwe's Women and AIDS Support Network, "there is no sexuality, only fertility."
Ironically, the prohibition against wives participating fully and actively in sex can itself promote the spread of the virus. Eliot Ma-gunje runs counseling groups for men at The Centre. He hears men complain that their wives' passivity "destroys the enjoyment of sex--she's just lying there like a log. 'Why are we going out?' men ask. 'Because a prostitute is 100 percent what I want. My wife is just for cooking and washing.' "
Of course, real-life relations between men and women are more complex. Jane, a Zimbabwean woman who asked that her last name not be used, says, "If your husband demands sex you are not allowed to deny him, but in practice you communicate and understand each other." The trouble is that such communication takes place on a field steeply tilted in favor of the man. Jane, for example, knew that her husband had a girlfriend on the side, and she took the step of asking him to use a condom. "My husband answered, 'I cannot use a condom with my wife,' " Jane recalls. "So I think that's why I got infected." She's not alone. A study from Zimbabwe found that more than half of women with STDs contracted their illnesses from their husbands. Marriage, say many AIDS workers, is a risk factor.
Anecdotal reports indicate that dry sex is waning among educated, urban young people. But there are also loud calls to reject Western gender roles, which are said to emasculate men. Even in the cities, says Matshe, "it's 50-50." Of course, most Africans still live in rural areas or small towns. And changing sexual practices is never easy, in part because they touch fundamental issues of personal identity and sexual roles.
It's not surprising that men like dry sex--the swollen tissues make the vagina smaller and, therefore, make the man feel bigger. Also, some men (and women) find vaginal secretions repugnant, while others don't like the sound of wet sex. And to many men, a vagina that is too wet and loose can signify infidelity.
But some women also prefer dry sex. Mhakeni stopped only because she is HIV-positive and wants to protect herself against getting any sexually transmitted diseases that might weaken her immune system. Despite the pain of dry sex, she favors it. "It's our culture," she explains. Then she adds a reason researchers and AIDS workers say they hear over and over again: "If I don't use herbs, our men will go with someone else." Indeed, Mhakeni sells the herbs, and even when she warns women of the risks, they still buy. "They say, 'It is okay if HIV is brought in by my husband, because at least I will still be married.' "
Fanuel Adala Otuko looks every inch the leader of Kenya's Luo people: old, ramrod straight, missing six lower teeth pulled at age 12 as a rite of passage. "It is painful," he says, "but you cannot cry."
The Luos no longer pull their children's teeth, but Otuko and other elders want to revive some of the Luo's other traditions, especially those they believe might slow the spread of HIV, which has devastated them. In Kenya, Luo land is one of the hardest-hit areas in the country, with the rate of infection among adults in Kisumu, the city where Otuko lives, topping 20 percent.
All over Africa, AIDS workers are beginning to target male behavior. Around Kisumu, they are especially concerned about the fish merchants on the shores of Lake Victoria, who lure young girls with money. But Otuko and other Luo elders focus on women.
For example, the elders want to revive the ideal of female virginity. Traditionally, on the afternoon of a wedding, a dozen or more married women went to the newlyweds' home to check for blood, believed to be a sign of a woman's virginity. They also checked the man--not for virginity, but for sexual prowess. They "witness that she has a normal man," explains Otuko, "a man who can have sexual relations with her."
The elders also want to take more aggressive steps. Against the recommendations of most public-health workers, they want to identify HIV-positive women and impose restrictions on them. "They should be controlled, quarantined in their areas," Otuko says. (Only when asked does he say that this restriction could also apply to men.) "AIDS is serious," he says. "There is no cure. So people should avoid contact with infected women, sexual contact especially." There's the rub, because one venerated Luo tradition usually involves sex with a widow--and AIDS has caused a proliferation of widows.
Like many cultures in East and southern Africa, the Luo practice what is variously translated as home guardianship or, more commonly, widow inheritance. When a husband dies, one of his brothers or cousins marries the widow. This tradition guaranteed that the children would remain in the late husband's clan--after all, they had paid a dowry for the woman--and it also ensured that the widow and her children were provided for. When the guardian takes the widow, sexual intercourse is believed to "cleanse" her of the devils of death. A woman who refuses to take a guardian brings down chira--ill fortune--on the entire clan. Of course, if her husband died of AIDS, she might very well pass on the virus to her guardian. Millicent Obaso, a Luo public-health worker with the Red Cross, says: "We have homes where all the males have died because of this widow inheritance."
Danger to the inheritors is only one reason AIDS is putting this tradition under strain. Guardians are supposed to provide assistance, but even the elders concede that inheritors often take a widow only for sexual pleasure or to seize her property. According to tradition, a guardian must already have a wife of his own, so no matter how well-intentioned he may be, poverty often makes it impossible to support a second family.
Anna Adhiambo is standing where she and her husband used to live: in Ngeri village, on a fertile hillside that slopes down into the blue expanse of Lake Victoria. It's the first time she has been back since her late husband's family forced her off the property two years ago. Her husband died of AIDS in 1996, and she was inherited by his cousin. She expected him to help her feed her three children and pay their school fees (education in Kenya, as in most African countries, is not free). But he was a fisherman who had a family of his own, and "whenever he came from the lake," Anna recalls, "he said he didn't have enough. That was the song." They quarreled frequently, and five months after she was inherited, Anna decided to separate.
The consequences were swift and harsh. A group of men from the clan told her she and her children would have to leave the next day. She remembers that they called her an ochot, a whore who "goes from one man to another." When she asked them to "please leave me alone in my house," she recalls one of her brothers-in-law retorting, "This is our home. You shouldn't answer me rudely like that, and if you do so again, I will beat you."
Consolata Atieno is Anna's mother-in-law. She has been smoothing the earthen walls of a new hut, and on her hands the thick mud dries and cracks as she talks. Anna "violated tradition, broke a taboo," she says, so "we had to chase her and her children away. We felt the furniture and things in the house were my son's, so we took them. Anna did not buy them. And the land we took: Some we gave to my other sons, some we sold. In our tradition, a woman is the property of her husband's family. He bought her with the dowry."
Unable to farm, Anna now makes less than $10 a month doing odd jobs in a nearby town. The Akado Women's Group, a local agency, is assisting her, but so far only one of her three children is in school. How does Atieno feel about her grandchildren suffering? "When Anna was making this decision, she must have known the consequences." But if Anna cannot provide for them, her children will be at greater risk for continuing the cycle of infection. A study in Zambia, for example, found that a lack of education quadrupled the chances that a woman would contract HIV.
Otuko and the elders believe home guardianship could strengthen families like Anna's. What the elders want is to strip this tradition of its sexual component, transforming it into what they call "symbolic inheritance." They point out that nonsexual cleansing was practiced with aged widows who were past menopause. And in parts of Zambia and Zimbabwe, such symbolic rites have gained ground.
University of Nairobi philosophy professor Oriare Nyarwath believes nonsexual inheritance could bring "a dignified death to the practice, without making people feel culturally destitute." But, he notes, even symbolic guardianship implies that women are subservient to and dependent upon men. "The culture is patrilineal and patriarchal," he says. "The woman goes to live in the man's home, the woman fits within the man's culture. So necessarily she's not on the same footing as the man."
The most pernicious inequality is poverty, by no means a uniquely African phenomenon. Of the world's 1.3 billion living in abject poverty, 70 percent are women--and most of them face the same basic problems as African women. "In pre-industrial societies women are trapped in their reproductive roles," says Geeta Rao Gupta, president of the International Center for Research on Women. In ICRW's numerous studies on HIV, women from Latin America, Asia, and Africa report that they dare not insist on safer sex--or object to painful sex--for fear of being abandoned by their men and spiraling down into destitution. No wonder that in a 19-country study, ICRW found that the lower women's status, the higher HIV.
There are few places where poverty is worse than in Nairobi's slums, vast warrens of tin shanties, open sewers, and garbage-strewn dirt roads. In Korogocho, one of the poorest and meanest sections, a maze of narrow passageways leads into a one-room shack where the aroma of vegetable stew simmering on an open fire competes with the stench of raw sewage wafting in from outside. This is the home of Mary, who asked that her last name not be used. Two babies--Mary's seventh child and her first grandchild--lie on the bed.
Just a week ago, one of Mary's johns--who pay as little as 75 cents for sex--slapped her in the face when she asked him to use a condom. "I can't eat a sweet in its wrapper," he said. Flashing back eight years to the man who beat her so viciously that she couldn't work for two days, she let her latest violent customer go ahead. He may pay for his pleasure with AIDS, because Mary is HIV-positive.
Mary wasn't born in the slums, but in a rural area 100 kilometers outside of Nairobi. There, rich red earth nourishes broad green leaves of the plantain tree, the billowing shrubbery of coffee plants, and the yellow-tufted stalks of maize. Mary's mother Beth sits in a hut, the door propped open with a machete, and explains why her daughter left. Her account corresponds exactly to the one given independently by her daughter. The tale they tell is an allegory of how women's powerlessness fuels the AIDS epidemic.
Mary's husband "was a drunkard," Beth says. He beat Mary virtually every week, burned her clothes, and denied her food. Once, when he was drubbing Mary, one of their children got in the way. The husband literally threw the seven-year-old girl aside. She landed on a rock, injured her lung, and was hospitalized for two weeks. Mary fled to her parents.
At first Mary's father, who died just this year, welcomed her home. But after a few days he realized that Mary and her children were extra mouths to feed. Mary recalls, "My father told me 'I have my own kids, so you're a burden to me. Pack up and go.' "
There are thousands of women like Mary in Nairobi, not to mention all of Africa, and to help curb the spread of HIV they need much more than AIDS awareness. "The women I work with say they'd rather die of AIDS tomorrow than die of hunger today," says Ann Waweru, director of the Voluntary Women's Rehabilitation Centre, an organization that helps sex workers, including Mary, find alternative work. It's not easy. "Most have no skills and no place to get a loan to start a business. A man is almost never burdened with children, so he can do casual work, earn 20 shillings, and survive on that. But most of the women we work with have children. They are driven to commercial sex by poverty."
According to the custom of the Kikuyu people, Mary's brothers were each given a plot of land to farm. But as a female child Mary was given nothing. At first, she tried to stay in the village, supporting herself and her children by doing odd jobs such as drawing water from the well and helping people till their fields. But her father wasn't satisfied and he would beat Mary and her mother. After six months Mary fled for Nairobi with her children and virtually nothing else.
In the city, she spent her first night at the home of a friend, who told her, "I'm going to show you how to get money." Mary turned her first john that night, and, she recalls, "I was happy because I got money to feed my children."
Research intern: Christine Brownlee
© 1999, The Village Voice
Ending the Epidemic: African Prostitutes May Play a Crucial Role in Developing an HIV Vaccine
By Mark Schoofs
Only a vaccine can end the AIDS epidemic.
NAIROBI, KENYA -- In this city's Pumwani slum, everything seems inverted. Pumwani is one of the Kenyan capital's red-light districts, but the action happens during the day. After dark, it gets too dangerous even for prostitutes. Then there's the way the women advertise: no hip-high skirts or brazen busts. Instead, says Joshua Kimani, a charismatic young doctor who runs a research clinic for sex workers, a prostitute is "whoever sits outside their doorway looking clean."
But the most profound turnabout centers on women like Joyce, who lives in a room hardly big enough for her bed. Joyce, who asked that her real name not be used, came to Nairobi from Tanzania. With three children to feed, she turned to prostitution within a year. That was 1983.
No one knows exactly when HIV entered Nairobi. But in 1985, Canadian researcher Frank Plummer was studying gonorrhea and chlamydia among Pumwani sex workers, and almost as an afterthought he decided to add an HIV test. Two-thirds of the women tested positive. He shifted his focus to HIV.
Joyce was one of the lucky uninfected women--in fact, her luck was nothing short of astonishing. Fourteen years have passed since her original HIV test, and she has spent half those years servicing up to 10 johns a day. Yet she has remained HIV-negative even as the percentage of infected prostitutes topped 90 percent. She contracted other STDs, proving that her partners didn't use condoms and that she was almost certainly being exposed to HIV. But Joyce didn't get it.
Joyce was certainly unusual, but not unique. Indeed, Plummer made a curious discovery: If a sex worker didn't contract the virus after five years, she was unlikely ever to get it. The simplest explanation was that women like Joyce were resistant to HIV--almost uninfectable--and that's why these sex workers electrified the scientific community. They were, in the understated language of researchers, "multiply exposed but uninfected."
Prostitutes have been the scapegoats for AIDS in Africa, where the disease is spread mainly by heterosexual sex, and where men blame sex workers for bringing down AIDS. But, in the richest of ironies, Joyce and other prostitutes have provided researchers with valuable clues to the intricate workings of the immune system, and especially how it might be able to fend off the virus. In fact, the knowledge researchers gained from these women has been translated into a promising vaccine that is about to be tested in humans. The scapegoats of Africa's epidemic just might turn out to rank among its saviors.
Only a vaccine can end the AIDS epidemic.
The powerful new AIDS drugs, besides being too expensive for developing countries, do not cure the disease. In America and Europe, drug resistance and severe side effects are undermining the treatment of more and more patients, and the notion that HIV could be purged from the body has been shattered. The virus, which integrates into a patient's own DNA, appears to persist for life.
In theory, behavioral changes could stop the epidemic, and many Africans look to Uganda for hope. Ugandan president Yoweri Museveni aggressively confronted the epidemic, and infection rates in some urban areas have declined dramatically since the early 1990s; one surveillance site found that the prevalence of the virus has fallen by half. Yet even at that site, more than 13 percent of pregnant women are still infected--a huge pool of HIV-positive people. While education certainly can save millions, the fact is that behavioral change has never managed to halt the epidemic, not even in wealthy countries.
But vaccination has eradicated one disease--smallpox--and is on the verge of eliminating a second--polio. Ugandan researcher Roy Mugerwa, principal investigator of Africa's first AIDS vaccine trial, says, "We have learned from history that the only way to halt epidemics is with a vaccine."
Vaccines do not fight off infection; instead, they teach the immune system to recognize and attack the microbe. The world's first vaccine, for smallpox, was the cowpox virus, which causes only mild symptoms in people but primes the immune system for smallpox. Salk's polio vaccine was simply a killed polio virus. Technology has advanced, but the principle remains the same as when the ancient Chinese used to blow pulverized smallpox scabs through a bone into people's noses: Train the immune system with a dummy virus.
But can the body be taught to fight off HIV? There was a time when many scientists came close to despair, and many still harbor doubts. After all, AIDS attacks the immune system itself, and it kills almost everyone it infects. There were always people who recovered from smallpox, and there were many more who never even showed symptoms because they fought off the virus so quickly. But the more scientists learned about the natural history of AIDS, the more it seemed that everyone infected would succumb and that no one could repel the virus.
This is why the Pumwani prostitutes are so important. It's also why "people didn't believe us in the beginning," recalls Omu Anzala, one of the researchers who studied the Pumwani women. Had the sex workers really come in contact with the virus? They certainly didn't test antibody-positive, the classic trace of an infection. So maybe, despite all their johns, they had never encountered the virus.
But the virus leaves other traces. The immune system has two main arms: antibodies, which attack viruses floating free in the bloodstream, and cytotoxic T-lymphocytes--or killer T-cells--which destroy the body's own cells that have been infected. Like antibodies, killer T-cells are specific to one microbe, so they, too, are a kind of fingerprint.
What happens is that an infected cell displays on its outer membrane fragments of the virus called epitopes. Killer T-cells that recognize these particular epitopes destroy the infected cell. What's more, the immune system clones millions of killer T-cells that are specific to those epitopes, in order to wipe out all the cells the virus has infected. So, high numbers of HIV-specific T-cells indicate that the virus was present.
Oxford researcher Andrew McMichael is one of the world's leading experts on the killer T-cell. McMichael and his colleague Sarah Rowland-Jones had studied multiply exposed yet uninfected sex workers in the West African nation of the Gambia, and many of them had elevated numbers of HIV-specific killer T-cells. But in the world of the multiply exposed, the Gambian sex workers couldn't hold a candle to the Pumwani prostitutes. They were the acid test.
Plummer's team had found evidence of HIV-specific killer T-cells, but many scientists weren't convinced. Collaborating with Plummer, the Oxford researchers verified the findings, banishing virtually all scientific doubt: The women really had been exposed to HIV, and their bodies had mounted a defense with killer T-cells.
Could those cells be the key to protection?
As scientists learned more about HIV's initial assault on the body, it became clear that the immune system always mounts a vigorous counterattack. In fact, what happens in the first few weeks after infection is nothing short of extraordinary--and it bolsters the current consensus that killer T-cells are critical to warding off HIV.
What typically happens is this: The surfaces of certain cells in the body are studded with two molecules, named CD4 and CCR5. If the virus chances upon such a cell and binds to these molecules, then, like a burglar picking a lock, HIV gains entry, commandeers the cell's DNA, and forces it to churn out as many as 10,000 new viruses. These are ejected from the cell to float in the body, waiting to enter new cells.
Within 48 hours, swarms of viruses have advanced from the site of infection into the lymph nodes, where HIV's favorite immune-system cells abound. In as little as three days, the virus has infiltrated certain long-lived cells where it can hide out during years of ferocious medical assault and still emerge to rekindle the infection. By the 10th day, HIV has usually spread to the brain, spleen, and gut. At this point in the invasion, the amount of HIV in the blood soars to almost unbelievable levels: A single milliliter of blood--a mere droplet--can be teeming with as many as 95 million viruses.
Then the immune system rallies. The body produces millions of HIV-specific killer T-cells that attack infected cells and also excrete special molecules that can paralyze HIV. Antibodies against the virus won't appear in the blood for about two more weeks--sometimes not for a few months--and they seem to have little effect. It is the killer T-cells that appear to suppress the virus.
Yet they don't eliminate it. Instead, the virus and the immune system become locked in a pitched battle that lasts for years. Eventually, for reasons that are still not understood, HIV overwhelms the immune system, rendering the patient vulnerable to whatever diseases come along.
Those initial days of infection, when the body becomes saturated with virus, are the key to a vaccine, McMichael believes. Killer T-cells are "always chasing the virus," he says, "and the virus is always one step ahead. But if a person is vaccinated, then the immune system starts out ahead."
So what McMichael and his team have done is construct a vaccine made from the DNA of epitopes that killer T-cells recognize. He's made sure that these virus fragments come from parts of HIV that don't mutate and so can't change to escape the T-cells' attack. Some of the epitopes in the vaccine are ones targeted by killer T-cells of the exposed but uninfected Pumwani prostitutes. "The vaccine," says Plummer, "was built in part around these women."
After safety trials in England starting early next year, the vaccine will go into trials in Nairobi. Maybe a vaccinated immune system can eliminate the virus before it gains a foothold. Or, barring that, maybe the vaccine could help the body suppress the virus to such low levels that it would be hard to transmit and never cause disease.
Maybe.
Selina, not her real name, blocks out the difficult parts of her life. She claims, for example, that she cannot recall the first time she had sex for money. But she revels in the scraps of good fortune that come her way, such as the fact that she never got HIV. Like Joyce, she had been in Plummer's original 1985 cohort, and like Joyce she didn't get infected. She bragged that she was immune. But today, when asked if she used to think she was invulnerable to the virus, she answers in a non sequitur, saying that she has to be careful because some men remove their condoms "in a tricky way."
The life of prostitutes in Pumwani is hard. When they contract HIV, they progress to full-blown AIDS in an average of just four years--far less time than Kenyan women who aren't sex workers, not to mention First World women. The prostitutes, says Plummer, live "incredibly violent" lives. In 1996, Selina was raped repeatedly. At that point she had tested HIV-negative for 11 years. But shortly after the rape, she tested positive. She has already suffered a variety of AIDS-related illnesses and lost more than 10 percent of her body weight. The veins on her forearms are prominent, running like long ridges down the smooth landscape of her skin. Yet Selina has staunchly refused to be told the results of her test. Kimani explains, "She can't come to terms with the fact that she thought she couldn't get HIV and now she has."
There are a few others like Selina--multiply exposed, persistently negative women who suddenly have become positive. Plummer and Kimani think that in Selina's case, the stress of the rape might have weakened her immune system. But the other women who have belatedly turned positive seem to have another risk factor: stopping prostitution.
High levels of killer T-cells are not normally maintained for long periods. They arise in response to an invading microbe, then subside. So perhaps what's keeping the women immune is constant, low-level exposure to HIV from their johns. When the women take a vacation, their killer T-cells wane, leaving them vulnerable to the virus.
What does this mean for a vaccine? "It's not good news," says Plummer. After all, one would hope that immunity lasted forever, or at least for many years. If frequent booster shots are required, a vaccine would be unaffordable where it's needed most: in the developing world.
But McMichael has a different take on the newly infected women. Kimani found that resistance runs in families, suggesting a genetic trait. Such traits have been found in other people; some Caucasians, for example, have a mutation which makes their cells impregnable to the most common strains of HIV. But the fact that the Pumwani women can get infected is actually "good news," says McMichael. "Not for those women, of course, but it is good news for a vaccine because it means they don't have some special, undetected genetic immunity that a vaccine couldn't induce."
By far the biggest obstacle to an AIDS vaccine is the virus itself. For one thing, HIV has many different strains, called subtypes, and the major one in the United States and Europe--and hence the one most used in most candidate vaccines--is different from the dominant subtypes in Africa. No one knows if a vaccine designed against one subtype will protect against infection by a different one.
Then too, people's immune systems are different, composed of various "HLA types." Even if infected with the same strain, people often display different viral epitopes on the surface of their cells. These differences tend to correspond with ethnicity, so a vaccine that protects most whites might not be as effective among Asians or Africans.
McMichael has tackled these problems by making his vaccine out of fragments of the HIV subtype most common in Kenya, subtype A. In addition, he has included enough epitopes to cover probably every HLA type in East Africa. Still, McMichael's vaccine contains only 44 epitopes, plus a whole viral gene. Are these enough? And are killer T-cells truly the key to protection?
Most of the uninfected prostitutes appear to produce a special antibody in the place where HIV first enters them: the mucosal tissue of their vaginas. So, should a vaccine induce site-specific antibodies? There are other experimental vaccines that attempt to do exactly that.
No one knows the answers to these questions, but Africans are not waiting for the West to solve the problem. "I lost my own brother to AIDS two years ago," says Anzala, who has dedicated many years to studying the Pumwani sex workers' immune systems. "That really devastated me, because with all the knowledge I had.... " His voice trails off; then he snaps back and adds, "We can't wait for something to come from the U.S. No. We have to participate."
Indeed, African scientists are actively contributing to the research, providing ideas and laboratory research, pushing scientists to put candidate vaccines into trials on their continent, and insisting that the world develop vaccines that are likely to work against their subtypes of HIV. Uganda is already hosting the continent's first human trial of an AIDS vaccine, and Ugandan researchers are conducting the sophisticated laboratory analyses needed to evaluate the trial. South Africa--which accomplished the world's first successful heart transplant--has the most developed biomedical research capacity in Africa. President Thabo Mbeki has declared an AIDS vaccine a top priority, committing government funds to a soup-to-nuts research effort. "We're not just trial sites in Africa," says Quarraisha Abdool-Karim, a veteran South African AIDS researcher. "We have an intellectual contribution to make."
While the Africans are pushing as hard as they can, AIDS scientists around the world are also putting vaccines high on the agenda. The U.S. National Institutes of Health, which dwarfs any other medical research agency in the world, and which spends more than a billion dollars on AIDS research alone, used to give vaccine research less than 10 percent of its AIDS budget, less than any other category of HIV research. But over the last three years it has ratcheted up that percentage, and it has brought in Nobel laureate David Baltimore to lead its effort. Whereas the mood was once pessimistic, most scientists now believe a vaccine is possible.
But even if the scientific obstacles are overcome, another hurdle will remain.
Vast, impoverished, and riven by civil war, the Democratic Republic of the Congo is the hardest place on earth to conduct a vaccination campaign. But three times this year, thousands of health workers went out into the countryside, squirting the life-saving pink liquid into the mouths of millions of Congolese babies. In a village outside the town of Mbuji-Mayi, proud mothers held up their vaccinated babies as the whole village celebrated the immunizations. Despite war, the World Health Organization predicts that within a year, the Congo and the world may be polio-free. This is the dream of AIDS-vaccine workers.
But it is also the nightmare, because despite a cheap and effective vaccine, polio is being wiped out only now, about four decades after it was banished from America. Once an AIDS vaccine is developed, will Africa have to wait 40 years for it?
If the vaccine based on the Pumwani prostitutes works, Africa will get it soon. That's because its development is sponsored by the International AIDS Vaccine Initiative (IAVI), which is laying the groundwork for something that has never happened before: simultaneous delivery of a vaccine to the developed and developing worlds.
IAVI president Seth Berkley, who worked in Uganda during the early days of the AIDS epidemic, is a man in perpetual motion. He has lobbied the World Bank, the EU, the G-7, and any other deep pocket that will listen to create a fund for distributing an AIDS vaccine in the developing world. In addition, IAVI is making sure the vaccines it bankrolls will be available in poor countries.
Berkley has convinced Bill Gates to give his organization $26.5 million and the British government another $23 million; IAVI invests these funds in promising vaccines, fast-tracking them through the pipeline. "We are like a venture-capital firm," Berkley says. "But instead of demanding 50 percent of the profits, we want access for the poor."
Essentially, IAVI negotiates agreements that give the manufacturer the option to make the vaccine affordable for developing countries. But if they don't, says Berkley, "We retain a series of rights that allow us to get the vaccine out there."
At the Pumwani clinic, Kimani, the young doctor, says, "We promised the women that anything that came out of the research will benefit them. And they are already asking about the vaccine." In fact it will be years before the vaccine is ready for large-scale efficacy trials, let alone before researchers know whether it actually protects people. Even when pushed, science crawls.
Meanwhile, Kimani explains what happens as the women approach death. "When they are clearly deteriorating, we call them in. They ask, 'Am I not doing well?' And we say, 'Maybe it's time to go home to the village.' " Kimani pauses. "We have money we can give them to go home to their family." That statement sinks in, and then Kimani says--shouts, almost--"We desperately need a vaccine!"
© 1999, The Village Voice
South Africa Acts Up: Building a Movement on the Ruins of Apartheid
By Mark Schoofs
KWAMASHU, SOUTH AFRICA -- It's a hot, gray Sunday afternoon in March, and the sprawling Durban train station is almost deserted--hardly the best stage for an AIDS demonstration. Yet sitting on the floor is a small woman named Mercy Makhalemele, one of South Africa's foremost AIDS activists. And she is protesting.
Makhalemele found out she was HIV-positive in 1993. When she told her husband, he shoved her into a pot of water boiling on the stove, scalding her arm. She went to her job selling shoes "as if everything was okay," but her husband showed up telling her to go back home, get her things and leave him, because how could he live with someone infected with HIV? That was at 10:00 in the morning. At 3:00 that afternoon she was fired from her job. Her youngest child, Nkosikhona, meaning "God is there," was born infected. Makhalemele remembers taking her to the hospital and having nurses say, "She is HIV-positive, there is nothing we can do." And Makhalemele would insist, "I'm not asking you to treat her HIV, I'm asking you to treat her bronchitis." Her child died at two and a half.
For most of this time, Makhalemele tried to push her government--the new government of Nelson Mandela, the most progressive in Africa and maybe the world--to fight AIDS.
It looked like it would be easy. Quarraisha Abdool-Karim is one of South Africa's leading HIV researchers, and she was the first to head the country's AIDS control program. She remembers an AIDS conference in 1992, when Mandela gave the keynote. Abdool-Karim was to speak after him, but, she recalls, "there was very little to add. He knew all the issues, everything that had to be done."
But then there was silence. Until the end of 1998, when the prevalence of HIV among South African women attending prenatal clinics surged beyond 20 percent, the only major AIDS speech Mandela gave was to an economic forum in Switzerland. Why he waited so long to confront AIDS remains one of the most maddening enigmas of the epidemic. Mandela declined requests from the Voice for an interview, but even his friend and personal physician, Nthato Motlana, can't plumb it.
"I get so angry," Motlana said in an interview earlier this year. "I go to Mandela--I had breakfast with him this morning--and I give him hell." Exasperated, he adds, "The response by the previous apartheid government was a national disgrace. The response by my government--and I'm a very loyal member of the ANC, have been since the age of 18--has also been disgraceful."
In fact, the new administration made colossal blunders. First, the headstrong health minister, Nkosazana Zuma, authorized a $2.2 million AIDS prevention play, called Serafina II, that hogged a huge portion of the AIDS budget and was widely criticized for being ineffective. Then came Virodene, a locally developed treatment for AIDS. In fact, it contained an industrial solvent, harmful to humans. But Zuma--and Thabo Mbeki, then deputy president and now president of South Africa--championed the drug. When objections were raised by the Medicines Control Council, the South African equivalent of the Food and Drug Administration, Zuma dismissed their concerns, suggesting the council was in league with big pharmaceutical companies that didn't want competition from Virodene.
Finally, in October 1998, the government unveiled its Partnership Against AIDS, a public-private effort that has won high praise for prompting companies, churches, and civic organizations to tackle AIDS. But even as it was being launched, Zuma announced that the government was nixing the so-called "vaccine for babies," a regimen of AZT given to HIV-positive pregnant women that can greatly reduce the chance that babies will be born with HIV. Unaffordable, insisted Zuma, despite a government-funded study showing that giving AZT to pregnant women would save money in the long run, because treating babies with AIDS is very expensive.
Because of her infected daughter, Mak-halemele was especially outraged by the AZT decision. But she was also heartsick about what she saw as the larger issue: "How do we, as people already infected, fit into the government's program? We don't fit in any way because it's all about prevention." So she helped start the Treatment Action Campaign, an AIDS activist group patterned partly on ACT UP but also on South Africa's own tradition of protest politics, a tradition epitomized, of course, by Mandela.
Indeed, Mandela may not have done much for AIDS, but he did give his country a political system that responds to ordinary citizens. In a very real sense, he made AIDS activism possible.
But even Mandela couldn't make it easy. While activists everywhere must push politicians, South African AIDS activists must also cope with a society thrown horribly out of joint by modern Africa's most authoritarian, exploitative white regime. In building an AIDS movement, the legacy of apartheid is the biggest obstacle, even more onerous than errant leaders. Apartheid poisoned people with rage, resentment, and despair, creating a culture of violence and stigma that still haunts people with HIV. That's a problem because, before the infected can band together to fight, they must acknowledge they carry the virus. That's hard everywhere, but in South Africa, people who come out as HIV-positive risk physical assault, even murder.
Makhalemele's home region, KwaZulu-Natal, suffered some of the worst terror, because here a three-way war raged between the white regime, the African National Congress, and the Zulu Inkatha Freedom Party. AIDS activist Musa Njoko grew up in KwaMashu, a forbidding township outside Durban, the kind of place where people seem so beaten down that they are looking for someone weaker to kick. "The boys treated me very roughly," Njoko recalls. "I thought someone would get hurt for being HIV-positive." So she was "shocked but not surprised" when last December a woman named Gugu Dlamini declared that she was HIV-positive and got beaten to death three weeks later because, as some of her assailants were heard to say, her honesty shamed the township.
Three months after Dlamini's murder, the Treatment Action Campaign was kicked off with a nationwide petition drive, and Makhalemele, who had worked with Dlamini, decided to confront AIDS stigma by sending her petitioners to KwaMashu. Wearing T-shirts emblazoned with the photo of the slain activist and the slogan "Never Again," about 20 activists arrived in the township shopping center, a dusty place with bars on all the windows. The activists had requested a police escort, but with no police in sight, they fled.
Makhalemele never made it to KwaMashu. A few days earlier she had asked for the train company to provide the activists free transportation from Durban to KwaMashu. She asked again when she got to the station, and again the answer was no--and something inside her snapped. She sat down in the middle of the station, launching a fast that would last for seven days.
Sitting on the floor of the train station, she starts to weep. "I'm going to a Catholic mission," she says. "I'm going to stay there to heal the sorrow, the pain, the rage I have from working for seven years as an AIDS activist in this country."
Apartheid was never merely a racial system, but also an economic one that created copious wealth. It is possible to travel to Capetown or Johannesburg and believe one is in London or New York. The mansions are palatial. The phones work. The roads are good. All this gives the country a critical mass of educated, prosperous, urban inhabitants--no longer all white--who have a sense that they are entitled to a democratic society that works as well as any nation anywhere. The comparatively strong economy also means that people with HIV can dare to hope for at least some medication to extend their lives.
Of course, South Africa's wealth was created by ruthless exploitation, so the country is also blighted with poverty on a staggering scale. Illiteracy is rampant. Millions lack electricity and running water. This is what people mean when they talk about South Africa as a country of extremes or, as Mbeki puts it, two countries within the same borders. But this does not begin to describe the far-reaching devastation wreaked upon the nation.
To understand apartheid, go not to KwaMashu or even Soweto, but instead descend in a mine-shaft elevator deep below the surface of the Witswatersrand region to the reef, a band of sediment created millions of years ago by prehistoric rains. It's hard to see the gold, but it's there--tons upon tons of it scattered through the reef in mostly microscopic particles. Here is the simple geological fact has shaped modern South Africa more than anything else: Each ton of Witswatersrand earth yields only a few ounces of gold, and the richest deposits lie buried under eons of newer geological layers. So South African mines must plunge deeper than any others--as far down as five kilometers--and miners have to haul up colossal aggregations of earth. Without very cheap labor, it would have been impossible to make a profit.
Yet gold has long been the country's largest revenue producer. For example, the West Driefontein mine in Carletonville has extracted more than 4.5 million pounds of gold. The company has provided splendid housing for the mine manager: a gated mansion complete with manicured garden. The ordinary laborers also live in company housing. Typical is a room about 20 x 20 feet, crammed with 14 bunk beds and lockers no bigger than those in a school gym. The men who live in this room come from across southern Africa, and they are all married. But their wives are back home. The miners see their families only every two or three months, usually for just a few days at a time.
It is a system that was invented nearly a century ago by the diamond and gold industries. Africans were crowded into reservations, where hut taxes forced them into wage labor. Chiefs were paid to supply men--but only men. Housing black families would cost money, and letting black workers settle permanently in mining towns would make it easier for them to organize resistance. So workers were housed in all-male barracks, called hostels, much like the ones at West Driefontein.
Apartheid's mesh of more than 100 interlocking laws basically nationalized the pattern devised by the mining industry, which at its height employed more than a fifth of black South African adults. Apartheid's hated pass laws, which restricted the movement of blacks, grew out of company policies designed to shuttle workers between their homes and the mines. And in the 1960s, the government forced as many as 3 million Africans into barren and degrading reservations they called Bantustans, an Orwellian term intended to prop up the sham that these were independent nations.
Blacks lucky enough to land a job in a city lived in outlying townships--often, in the early days, with their families. But that changed with the infamous 1964 Bantu Laws Amendments Act, which mandated that new workers live in all-male hostels in the townships. The mining model had become national policy, and the results were disastrous.
"I lived next to a hostel in Soweto, and I would get called to treat someone stabbed or shot." Motlana recalls. "The stench in those places! They were filthy. The hostels bred crime, but it goes beyond that. Children were ill-disciplined because they didn't have fathers. It led to so much human abuse."
It also led to an explosion of AIDS. South Africa has one of the world's fastest-growing HIV epidemics, and many researchers believe that the country's system of migrant labor is one of the driving forces. "If you wanted to spread a sexually transmitted disease, you would take thousands of young men away from their families, isolate them in single-sex hostels, and give them easy access to alcohol and commercial sex," says Mark Lurie, a South African researcher who has studied the effect of migrant labor on HIV. "Then, to spread the disease around the country, you'd send them home every once in a while to their wives and girlfriends. And that's basically the system of migrant labor we have."
In Carletonville, Yodwa Mzaidume works with the hundreds of prostitutes that live in squatter camps by the mining hostels. She trains them to educate each other to use condoms, but it's hard to involve them in anything beyond that. "Take Leeupoort," she says, referring to one of the squatter camps. "People there don't have toilets or running water. If you come to them talking about political activism, they ask, 'What's in it for me?' "
In America, the cry of AIDS activists was simple: "Drugs into bodies!" But in South Africa, the needs are so much more complex. Mzaidume ticks off some of them: "Migrant labor, overcrowding, unemployment, the crime rate. But what are we doing about them? What can we do?" Migrant labor, she notes, has become so ingrained into South African life that "mineworkers don't want their families to stay here. They say, 'Who would take care of my cows back home?' "
Mzaidume doesn't dwell on South Africa's past because what's spreading HIV, she quips, "is sex with other people, not sex with apartheid." But with unemployment officially above 30 percent and probably much higher, she says, "There's a lot of anger among the youth. They say, 'Yes, we are in a democratic South Africa, but we still live in apartheid.' "
The result is rage. Njoko, the activist who grew up in KwaMashu, explains: "They'll see me and think, 'She is an HIV-positive woman, how is she doing so well?' And then maybe they'll hurt me or kill me. But when you look deeper you find out the guy has been unemployed for 10 years." Some men even take out their anger by infecting other people, she says, echoing a common conviction. "They say they don't want to die alone, they're going to take people with them. I don't support them, but there's absolutely nothing there for the person who is HIV-positive. The message is they're going to die."
Zackie Achmat is one of the architects of the Treatment Action Campaign. He also fought apartheid, organizing student demonstrations and going to jail for it. Although his ancestry is mixed-race, he called himself black, a tactic of solidarity. He is also a leader of South Africa's flourishing lesbian and gay movement, and with his international connections he could get the very latest medication to treat his HIV. But he has publicly declared that he will not take any drug that is not available to all South Africans.
So when he stood up at a meeting this spring, attended by Zuma, then the minister of health, Achmat had credibility. He told her of his longstanding membership in the ANC, pointed out that the AIDS movement supported her opposition to high pharmaceutical prices, and requested a meeting. To the astonishment of most activists, she agreed. And after the meeting, she reversed her policy on AZT for pregnant women.
It was a stunning victory--and it opened the way for much larger advances, especially on drug prices. It was Zuma who pushed through a law that could allow the South African government to bypass pharmaceutical patents and obtain essential medicines at much lower prices--for example, from companies that make generic versions of the drugs. That made South Africa ground zero in a high-profile battle joined by Western AIDS activists and organizations, such as the Nobel-winning Médecins Sans Frontières, to relax patent and trade restrictions that help keep essential drugs unaffordable. Here was a fight AIDS activists and the South African government shared.
But this fall, President Mbeki shocked activists by saying, "There exists a large volume of scientific literature alleging that, among other things, the toxicity of this drug is such that it is, in fact, a danger to health." Never mind that AZT has been evaluated in dozens of trials around the world, that its benefits usually outweigh its side effects, and that countries as strict as Germany and the United States have approved the drug for use against HIV. Indeed, in a study carried out among pregnant women in South Africa, AZT together with another drug showed no more side effects than a placebo. So where did the most powerful person in Africa get the notion that AZT is dangerous?
From the Web, one of his spokespeople, Tasneem Carrim, told the Johannesburg Sunday Independent. Mbeki's office denied it, but what Carrim said had the ring of guileless truth: "The president goes into the Net all the time," she was quoted as saying. Activists had hoped that Mbeki's new health minister, Manto Tshabalala-Msimang, would correct him, but to their dismay she has staunchly supported him.
In the township near Carletonville, the percentage of 25-year-old women infected with HIV is a shocking 60 percent. Most of these women will probably get pregnant. "Why not give a chance to have a baby that is not HIV-positive?" asks Mzaidume. Then she says, bitterly, "It doesn't matter how many presentations doctors make, if politicians don't want it, it will not be." Mbeki did not respond to requests for an interview by the Voice.
Because there is scant medical evidence to support Mbeki's opposition to AZT, many South Africans are casting about for what might have motivated him. Perhaps years in the struggle against apartheid imbued him with mistrust of powerful white corporations, such as pharmaceutical companies. Maybe, too, it instilled a stubbornness that won't allow him to admit he erred. But since Mbeki's specialty is economics, much of the speculation has gravitated in that direction.
The popular notion that apartheid was overthrown by the ANC is only part of the truth. What also happened is that the apartheid economy collapsed. Treating workers as wholly expendable was fine when industry needed mainly unskilled labor. But as technological advancements demanded educated, stable workers, apartheid's migrant labor system backfired, as did the policy of giving blacks only rudimentary education. "If those stupid fools had just decided to train 100 black engineers a year," says Aggrey Klaaste, publisher of theSowetan newspaper, "this country would be phenomenal."
But the country was anything but phenomenal when the ANC took power. GDP was actually shrinking. Inflation was running above 15 percent. Capital was fleeing the country. And wasteful spending on police and defense, required to fight an ever bolder black resistance, had burdened the country with a large debt.
Despite being raised by communist parents, Mbeki has charted an aggressively capitalist course. Even though it burdens the economy, he is reassuring international investors by stoically paying off the apartheid-era debt. He has imposed a strict fiscal discipline to accommodate world financial institutions such as the International Monetary Fund. While such policies may boost South Africa in the long run, they have left the government strapped for cash--and AIDS drugs are expensive. "They're terrified of starting down the slippery slope of treatment," says Achmat, "because they think it will cost too much."
That certainly would be true if the government subsidized the costly drug cocktails that have reduced American AIDS deaths. But there is a middle ground. Some of the opportunistic illnesses that kill people with AIDS can be prevented by taking relatively cheap prophylactic drugs. The reason the government isn't providing such drugs is that it isn't being pushed by "a treatment-literate HIV population that knows its rights," says Achmat. "The level of understanding here is vastly different than in Europe and North America." At the start of the Treatment Action Campaign, he recalls, people thought AZT was a political party.
That is beginning to change, largely because activists have pushed the issue into the media. Two powerful unions have thrown their weight behind the Treatment Action Campaign, and science itself is pushing the government. There is a new drug, nevirapine, which seems to prevent mother-to-child transmission as effectively as AZT, and at a much cheaper cost. It's being studied in South Africa, and the results of that trial are scheduled for release at the huge World AIDS Conference to be held next year in Durban. It will become harder and harder for the government not to act.
Already a groundswell is apparent. People with HIV are more and more visible. Makhalemele, for example, is back from her five-month retreat and cohosting Beat It!, a national television show on how to live with HIV. On World AIDS Day this month, she says, the media was "full of AIDS faces." One of them is the Sowetan's Lucky Mazibuko, the country's first openly HIV-positive columnist. He lives in the township and has become a magnet for people who need someone to talk with. Recently he got a letter that shows how attitudes are changing.
"The letter was from an elderly woman saying she had a son who was HIV-positive, but she had rejected him, chucked him out of house. Now, she was working as a domestic for a white family, and her employer's daughter turned out to be HIV-positive. So as part of her job she has to take care of their daughter--and she only saw her son when he was buried."
In a country with at least 3.6 million infected, an old African proverb has new relevance: "Something with horns cannot be hidden." The sick and dead are forcing South Africans to confront the disease, themselves, and their brutal history.
© 1999, The Village Voice
Use What You Have: Treating AIDS Without Money
By Mark Schoofs
GULU, UGANDA -- It's four in the afternoon and Rose Ayo hasn't eaten yet. The 28-year-old mother of five eats only once a day, usually greens mixed with beans or maize meal. She has no job. Her family's food comes from farming a little plot of land and foraging for wild vegetables. Meat is out of the question. Eggs and milk are luxuries she can obtain only a few times a year. Yet one of the key elements of "positive living"--the basic lifestyle changes that enhance the health of people with HIV-- is a balanced diet. "That," says Ayo, who found out she was infected when her husband died of AIDS three years ago, "is really hard."
Things get even harder when she requires medical treatment. "Last year I fell sick with malaria and vomiting, a basinful of vomit," Ayo recalls. "Instead of paying rent I bought the drugs, and the landlord chased us away from our house." She fled to her uncle, who gave her and her children shelter in a tent. A year later, that leaky tent is still their home.
Ayo lives in Uganda, the country with probably the best response to AIDS in Africa. Uganda was one of the first places where African AIDS was discovered, among fishing people on the shores of Lake Victoria, and now 9.5 percent of the adults in this country of about 20 million are estimated to be infected. But Uganda boasts some of the continent's most experienced and dedicated AIDS doctors, as well as a renowned prevention program, strong networks of HIV-positive people, and a supportive government. In short, this is a country with everything but money.
So what does AIDS treatment mean in this best of all poverty-stricken nations?
In the industrialized world, powerful drugs called antiretrovirals have sent AIDS death rates plummeting. AIDS hospices have closed, and people with HIV are running marathons and hiking the Appalachian trail. But even at discounted prices, the cost of putting all of Africa's 23.3 million people with HIV on one of the standard three-drug regimens would exceed $150 billion a year. In Uganda, according to one study, such a treatment program would consume more than 60 percent of the country's GDP.
Undaunted, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and a group of pharmaceutical companies are running a pilot project in Uganda that sells HIV drugs at discounts of up to 56 percent. But this program provides antiretrovirals to less than one-tenth of 1 percent of Uganda's HIV-positive population. And many of these lucky patients drive themselves and their families into debt trying to pay for even the least expensive regimens--which often are the least effective.
For the overwhelming majority of Uganda's AIDS patients, the concerns are far more basic. A group of 98 people with HIV, including Ayo, are sitting under two immense trees in Gulu, a city in northern Uganda. Eighty-five say that over the previous year they have endured five or more days without any food at all. "I'm getting thinner and thinner," says Morris Opio, chairman of Gulu Hospital's AIDS counseling organization, Waloko-Kwo. It was in Uganda that AIDS was first dubbed "slim disease" because it wastes people into skin-wrapped skeletons. Opio holds out his spindly arms and says, "I look sick, but it's from no food."
An hour's drive away, in the town of Lira, "We don't have shoes or boots, so we're more likely to get infections like rashes and boils from the grass," says Juliet Awany, a member of the National Guidance and Empowerment Network of People Living with HIV/AIDS (NGEN+). She also worries about diseases, such as worms and dysentery, that are rare in wealthy countries.
But the push for basic medicines has attracted far less attention than the campaign for antiretrovirals, and few if any Western AIDS activists are championing food relief. "It's only recently, I must admit, that I became aware" that hunger was the leading concern among rural Africans with HIV, says UNAIDS director Peter Piot, who spent years working in Africa. Yet across the continent, hunger stalks people with HIV.
Studies from Zambia and Malawi have found that patients often consider food their most important need. The Zambian study also looked at home care and discovered that, when a patient dies, the family mourns not only the loved one but also the end of food aid. Even in Uganda's relatively prosperous capital, Kampala, patients say they often have trouble achieving a balanced diet, with most complaining that meat and fresh fruit are too expensive. As for drugs, Vincent Wandera, who has HIV, says simply, "They write you medicines, you fail to buy."
No wonder veteran AIDS doctor Peter Mugyenyi says that treatment in Uganda "means frustration." Noting that industrialized countries have only a small proportion of the world's people with HIV, Mugyenyi says, "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. It makes no difference how many die. It's a hard-nosed business decision. As long as we don't have money, they will just ignore us." [See box, "Of Patents and Pills."]
As Africans struggle to sort out their agonizing treatment priorities--food? clean water? basic medicines?--they must also cope with the emotions that arise with an endless tide of deaths that they now know are preventable. "It was easier when there was nothing at all to treat HIV," says Lillian Mworeko, an HIV-positive school teacher and member of NGEN+. "Now there is something, so it's like seeing food when you're starving, but you can't eat."
ELLY KATABIRA COPES BY BLOCKING OUT everything except "that patient sitting in front of me." Katabira founded the AIDS clinic at Uganda's flagship Mulago Hospital in Kampala and co-wrote Africa's first manual on HIV care. In that book, he laid out his philosophy: "Use what you have."
Through extensive research and observation, Katabira and his colleagues have tweaked medical care. Thrush--a painful fungal infection of the mouth and throat--afflicts virtually every HIV patient, making it hard to eat because of the pain of swallowing. The cheapest treatment is nystatin; Ugandan doctors found that sucking the tablets rather than swallowing them gets more of the drug absorbed into the tissues of the mouth, making it more effective. Skin rashes are also extremely common among HIV patients. "There was a tendency to look at the skin alone," Katabira says. But if the rash is bad, he prescribes a sedative. "It allows the patient to relax and sleep, so he's refreshed and able to make himself active, which in turn means he's less likely to scratch."
"What I think is most important," he continues, "is support--counseling and reassurance that, yes, you are sick, but there are a lot of things you can do to improve your living without medicine. Simple things, like reducing your alcohol intake and going to the doctor as soon as you feel sick. And dealing with dependents. A parent will never get better if she's worried about her children. These things are considered second-rate, but I think they're very important."
The ultimate proof: "Our patients are living longer. I'm proud of that. Without protease inhibitors, they are living longer."
Yet the hard reality is that without such advanced drugs, the virus keeps replicating, slowly destroying the immune system. Almost all the infections that result can be treated--in rich countries. But in Uganda, says Katabira, "if you get CMV [a viral infection that blinds and kills], that's the end of the story. The drugs are just too expensive." Same for cryptococcal meningitis. What's more, CMV and the main AIDS pneumonia PCP are both preventable--but not with Third World budgets. The painful genital sores of herpes simplex, which most Ugandan HIV patients get, are easily controlled with acyclovir, but Katabira reckons that "less than 1 percent of my patients can afford it."
"Many people think that because I'm in the field of AIDS, I look at it as something special. No," Katabira says. "The problem is wider. I go to the pediatric ward, and kids are dying because there's no amoxicillin," a basic antibiotic. "I could have walked away in protest, but I must do each and every thing possible to get my patient through the next day. Use what you have."
PATRICK OKELLO, A TALL HIV-POSITIVE patient living in Lira, has the mango tree. He boils its roots, which helps him fight diarrhea. Many people go to traditional healers to get herbal remedies. Indeed, up to 85 percent of Africans consult healers, not surprising given that they are far more plentiful than physicians and that they hold an esteemed position in most African cultures.
Western doctors have tended to dismiss their efforts. But in Uganda, some of the first evidence emerged that herbal remedies can effectively treat AIDS-related illnesses. A study of patients with chronic diarrhea or herpes zoster found that those treated by traditional healers fared slightly better than those given Western medicines. Studies in Zimbabwe and Senegal have confirmed that some traditional treatments work against some illnesses, especially diarrhea. And healers can make a patient feel cared for, an important psychological boost.
Unfortunately, there is no way to tell who is a charlatan, or even which remedies given by a well-meaning healer are truly effective. Awany, the woman who wishes she had shoes to protect against rashes and boils, went to a traditional healer for diarrhea; the herbs he gave her only worsened the problem. "When I told him it didn't work, he said it was washing out the stomach to wash away the germs. I was almost at the dying point when I went to the hospital." But over in the next town, Rose Aciro swears by the thrush treatment she gets from her healer.
Most Ugandan healers claim to alleviate opportunistic illnesses, but only a few profess to cure AIDS itself. Not even antiretrovirals can do that, but they do keep the virus in check, which is why David wants them. This January, the trim, articulate partner in an advertising and media firm, who asked that his real name not be used, started triple combination therapy through the UNAIDS program. Including all the laboratory tests, the treatment costs him between 8 and 9 million Ugandan shillings a year, or about 6250 U.S. dollars. That would have been bearable last year, when his company landed a one-time windfall contract and David took home about 20 million shillings, or $14,000. But this year, he says, "I won't make half of that."
Speaking in early September, David said he had already been forced off his drugs. He was two months behind on the rent for his family's two-bedroom apartment. He had cut their meat consumption by 60 percent. And now, his children's school fees were coming due. Did he have the money? He smiled ruefully and shook his head. "If I had it I would buy drugs. I wouldn't think of school fees when my life is at stake."
Out of Uganda's estimated 930,000 people with HIV, only 852 are receiving antiretrovirals through UNAIDS, according to the most recent figures. About three quarters of them are taking only two drugs, not the usual three, and most of those are taking AZT and 3TC, a regimen considered substandard in the United States.
Rose Byaruhanga is chief counselor at the clinic where David gets his drugs. A motherly woman, she knows her patients intimately. "Most are paying with their savings," she says. "When you look six or eight months down the line, there's no way they can afford it."
As for David, "I lie in my bed, but I can't find sleep. I make calculations on how I can get this money. I look at one option, then at another option. I go to bed at 10:00, but I fall asleep at 3:00 or 4:00. I just lie there and think."
PETER NSUMUGA ALSO WORRIES ABOUT money. He runs Uganda's Sexually Transmitted Infections (STI) Project, which provides drugs not only for STIs, but also for common AIDS opportunistic infections. But the Ugandan government puts up only 5 percent of the cost, and the program is due to expire next year. "If nothing replaces it," says Nsumuga, "it would leave a big gap." Spurred on by the International Monetary Fund, Uganda now requires patients to pay for many medical services, including drugs. Could this revenue raising scheme pay for the medicines? "Very unlikely," says Nsumuga. "These drugs are damned expensive."
That's one reason Africans with AIDS usually don't go to the hospital until they are at death's door. Josca Lalaa lives in one of the crowded displaced-persons camps that dot the countryside around Gulu, which has suffered many years of civil strife. Such camps are not unusual in Africa, with its 3.2 million refugees. In December 1996, Lalaa started coughing up blood, but she didn't seek treatment for six months.
Lalaa was suffering from tuberculosis, one of the most common AIDS-related illnesses. But if she starts coughing up blood again, she might not get a bed at Gulu hospital. The TB ward used to have an annex--a tent that held half the TB beds. But ants ate away at the cloth, the ropes, and even the wooden poles. By last year, when the hospital surrendered to the inevitable and took down the tent, its floor was in tatters, exposing patients to the bare earth.
Over the last eight years, TB cases in Gulu have quadrupled, thanks mainly to HIV. But there is no money for a new tent, so the TB ward admits only the sickest patients. It runs at 150 to 170 percent capacity, with patients sleeping on the floor.
Charles Odonga is the main AIDS doctor at Gulu Hospital. He explains that because patients keep flooding in, the hospital has limited their stay to two days. "If they go beyond two days, they are occupying someone else's place," he says. "So we push them out." Many patients don't bother to come at all, he says, "because they are aware of what we can and can't offer." And when those who are on the ward sense that death is near, they or their families often ask to be discharged. "They reason, 'Let's use money we still have for transport home, because it's cheaper when the person is still alive than it is to transport a dead body.' "
Odonga came to Gulu specifically to work with HIV patients, and "there are specific incidents where you give a patient a few extra days," he says. "But sometimes I wonder, should I just resign and go? Am I doing anything?"
Odonga has been at Gulu for less than a year, so the shock of "the limitations of the place" is still new. Not so for nurse Florence Opoka, who opened Gulu Hospital's HIV counseling unit nine years ago. Two years later, in 1992, she wanted to quit. "There was no drug," she says. "I could only help you to the grave." But as patients get weaker, she says, "they become closer to me. They come to my house, and when they die, they leave wills. They even leave me their children." Opoka is raising four orphans from four different patients.
Has Opoka seen any significant improvements in AIDS care over the last nine years? "No," she says, looking away. Then she explains: At the moment, the hospital doesn't even have medicine for bilharzia, a common water-borne parasite, and it has also run out of a key malaria medicine. But what hurts the most is that food donations to her organization were cut this year. Virtually none of her patients has enough to eat.
Still, like Elly Katabira, she uses what she has. "I open my home," she says. "If I have millet or bread, I share the little I have."
Of Patents and Pills
If David Sekirevu didn't have well-connected friends who could procure drugs, he would be dead. He contracted cryptococcal meningitis--one of the most feared AIDS-related illnesses--and the drug that fights it, fluconazole, is far too expensive for Sekirevu and the vast majority of Ugandans. But does it have to be?
AIDS activists say no, and point to Thailand. When pharmaceutical giant Pfizer had a fluconazole monopoly there, the price of a daily dose was $14. But when local companies started manufacturing generic versions, the price tumbled to about 70 cents, a 95 percent drop. Thai companies also make generic AZT; the price of that AIDS drug has fallen by almost three-quarters.
Activists want the United States and world trade bodies to allow poor countries to manufacture more life-saving drugs or import them at lower prices. When countries such as South Africa moved to do so, the U.S. threatened trade sanctions. But after ACT UP dogged Vice President Gore, the U.S. backed off.
The fight over drugs called antiretrovirals, which target HIV directly, has generated the most publicity. One company under fire is Bristol-Myers Squibb, which makes the AIDS drug ddI. For a United Nations pilot program in Uganda, Bristol sells the drug for less than $160 a month, a discount from First World prices but still astronomically expensive for most Africans. Activists argue that, because the U.S. government funded the development of ddI, its price should be much lower. Bristol retorts that it purchased the patent from the government and invested in clinical trials, so it deserves to control the price. More broadly, the pharmaceutical industry argues that profits feed new research.
Bristol also points to its AIDS charitable program, launched this year, which will donate $100 million to several African countries. But critics point out that Bristol CEO Charles Heimbold Jr. took home a 1998 pay package of more than $56 million and retained about $200 million in stock options.
Relaxing patent laws is no panacea. Patents for many of the compounds on the United Nations essential drug list have expired, yet distribution remains spotty. In much of rural Africa, only half of children get vaccinations, and only 30 percent have clean water.
The experience of tuberculosis is sobering. Though the disease can be fully cured with relatively cheap drugs, African TB programs have been hobbled by such basic problems as lack of electricity to run diagnostic tests. The continent's crushing poverty breeds "theft of drugs at every point in the distribution system," as veteran researcher Susan Allen recently wrote. Patients, for example, sell their pills as soon as they feel better, even though they are not yet cured. AIDS cannot be cured, and HIV drugs must be taken for life, which means that treating AIDS will have even more pitfalls.
Finally, for many Africans with HIV, the first need is not medicine but food. Elhadj Sy of the United Nations AIDS Program calls the push for cheap antiretrovirals "commendable," but adds, "For people in the West, going hungry is very abstract. They don't know what it is." He draws an analogy to a major effort by the UN years ago to build hygienic latrines in rural Africa. "I remember in one of the villages an old man asked a very simple question. 'My children,' he said, 'don't you think you are trying to solve the problem from the wrong end?'"
© 1999, The Village Voice
Biography
Mark Schoofs is a staff writer and columnist for The Village Voice, where he specializes in reporting on science and medicine. His 1997 series on genetics won the Science Journalism prize from the American Association for the Advancement of Science (AAAS), publishers of Science magazine. Schoofs has also garnered the Best Reporting award from the deadline Club and the New York chapter of the Society of Professional Journalists, and he is a four-time winner of the Peter Lisagor award, given by the Headline Club and the Chicago chapter of the Society of Professional Journalists.
In addition to reporting on science, Schoofs has written cultural essays, art and music reviews, profiles, sports stories, and foreign correspondence from Eastern Europe. His work has appeared in The New York Times Magazine, The Washington Post, Esquire, The Advocate, the Paris Courrier International, and many other publications. Schoofs holds two United States patents, one for a swimming fin and the other for a swimming paddle. He received a B.A. in Philosophy from Yale University, magna cum laude, with distinction in the major.
He was born and raised outside of San Francisco, California. He now divides his time between Los Angeles and New York City.