By Jared Chausow
By Katie Toth
By Elizabeth Flock
By Albert Samaha
By Anna Merlan
By Jon Campbell
By Jon Campbell
By Albert Samaha
Additional articles in this series.
KWAMASHU, SOUTH AFRICAIt's a hot, gray Sunday afternoon in March, and the sprawling Durban train station is almost desertedhardly 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 governmentthe new government of Nelson Mandela, the most progressive in Africa and maybe the worldto 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 MandelaI had breakfast with him this morningand I give him hell." Exasperated, he adds, "The response by the previous apartheid government was a national disgrace. The response by my governmentand I'm a very loyal member of the ANC, have been since the age of 18has 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 Zumaand Thabo Mbeki, then deputy president and now president of South Africachampioned 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 noand 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 inhabitantsno longer all whitewho 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 theretons 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 othersas far down as five kilometersand 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 menbut 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 townshipsoften, 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 victoryand 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 pricesfor 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 the Sowetan 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 cashand 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 daughterand 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.
Research intern: Jason Schwartzberg
Next: Treatment Without Money