By Alex Distefano
By Scott Snowden
By Anna Merlan
By Steve Almond
By Jena Ardell
By Jon Campbell
By Alan Scherstuhl
By Tessa Stuart
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 Voicefor 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.