State of Denial

PBS Premiere: Sept. 16, 2003Check the broadcast schedule »

The AIDS Rebel


In February, 1996, Cameron requested a meeting with Mandela to discuss the government's AIDS policy. Mandela delegated the task to Deputy President F. W. de Klerk. Halfway through the meeting, a senior A.N.C. official arrived unexpectedly. It was Thabo Mbeki, who shared the post of Deputy President with de Klerk. The tenor of the meeting changed. Mbeki expressed grave concern about AIDS, firing questions at Cameron about the possibility of finding a medical solution. "He really, really cared," Cameron recalled.

Mbeki was particularly interested in finding an African remedy. Continued dependence on foreign "charity," in his view, would keep Africans locked in a state of subjugation. "We are our own liberators!" Mbeki liked to say. As a former A.N.C. revolutionary, he also relished the idea of bucking conventional wisdom. Surely Western drug companies did not have all the answers.

After the meeting, Mbeki pursued his own investigation of AIDS therapies. In early 1997, he approached his A.N.C. colleagues and informed them with great excitement about Virodene, a new South African drug. Whereas antiretroviral triple therapy, which entailed the use of three drugs in tandem, cost more than twelve hundred dollars a month, Virodene cost six dollars. If Virodene was everything its makers claimed it was, Mbeki said, South Africa would be able to bypass the Western pharmaceutical industry.

The makers of Virodene and a group of patients were invited to speak before the Cabinet. The patients were invited to speak before the Cabinet. The patients offered stunning testimonies. One man claimed that on Virodene he had gained twenty-two pounds in three weeks, and that boils on his body had vanished. "It was like a church confessional," Jakes Gerwel, Mandela's Cabinet secretary at the time, told me. "The patients said they were dying, they got this treatment, and then they were saved! The thing I will always remember is the pride in South African scientists."

The inventors of Virodene had been turned down for a license by the Medicines Control Council, South Africa's equivalent to the Food and Drug Administration, which said that the experimental drug was potentially harmful and ineffective. The Virodene scientists charged that the real reason was that South Africa's "AIDS research establishment" was beholden to Western drug firms. Mbeki was sympathetic to this argument. Over the years, thousands of South Africans had participated in experimental drug trials, only to be abandoned once results were tallied. Most of these trials were supervised by white doctors, who were paid huge sums by pharmaceutical firms.

The discovery of Virodene was touted in the South African press. Achmat saw the headlines on his way home from work. "When I saw 'South African Researchers Find a Cure for AIDS for Fifty Rand a Month,' I was so overjoyed," he said. Then Achmat read the details in the paper. "My heart sank," he said. He saw that Virodene's makers had tested the drug on humans without demonstrating its safety.

In fact, South Africans soon learned, Virodene was toxic. The drug's main ingredient, dimethylformamide, was an industrial solvent that caused severe liver damage. The South African media, still dominated by white journalists, seized on Mbeki's mistake. The Sunday Times of Johannesburg said that the Cabinet's "combined technical knowledge of the HIV virus would fit on the back of a postcard." Politicians were equally withering. Tony Leon, the head of the Democratic Party, said that Mbeki suffered from a "near obsession with finding 'African solutions' to every problem," even if it meant turning to "snake-oil cures and quackery."

Mbeki refused to admit his error. He and other A.N.C. officials called the criticism racist. Nkosazana Dlamini Zuma, the health minister at the time, claimed that members of the Democratic Party hated A.N.C. supporters, adding, "If they had their way, we would all die of AIDS."

The politics of AIDS had long been racially charged. Conspiracy theories had circulated all over Africa, and even among some African-Americans, suggesting that AIDS was part of a plot to wipe out blacks. In South Africa, these fears had some bases in fact. The apartheid government sponsored a clandestine germ-warfare program that was accused of targeting A.N.C. officials. Far-right white politicians expressed the hope that AIDS would leave whites less outnumbered. Clive Derby-Lewis, a Conservative Party M.P., once said, "If AIDS stops black population growth, it would be like Father Christmas." The A.N.C. government had always shown remarkable magnanimity toward South African white, granting amnesties to confessed killers and withstanding appeals for Zimbabwe-style land seizures. But the combination of the Virodene scandal, South Africa's tainted past, and the whiteness of the medical establishment helped turn the AIDS debate into a race war by other means.

Achmat was dismayed by the Virodene incident, but he remained faithful to the A.N.C. Mbeki had made a serious mistake, but, he said, "at least this was an attempt to find a solution on the established basis that H.I.V. causes AIDS."

In October, 1997, Achmat visited the home of Edwin Cameron, his friend, who had fallen dangerously ill with full-blown AIDS. He had a severe lung infection. Achmat was horrified. Not only was he watching a beloved friend in agony; he was seeing his own future.

Three weeks later, Cameron began antiretroviral triple therapy. The drugs, which had just become available in South African pharmacies, cost Cameron a third of his salary. They had an immediate effect. By December, Cameron was able to hike up Table Mountain, which looms over Cape Town. "Zackie and I knew that the only reason I was alive was something very artificial -- my capacity to afford these drugs," he said.

The following year, Achmat himself fell ill. He developed thrush, an oral fungal infection, which made it difficult for him to swallow; he believed he would soon die. His doctor told him that an expensive drug called fluconazole could treat his opportunistic infection. Achmat spent what money he had, and his friends helped to cover the rest. The drug, manufactured by Pfizer, cost fourteen dollars a day. In countries where generics were available, Achmat learned, the drug cost seventy-five cents.

Achmat's friend Simon Nkoli, a well-known gay-rights activist, suffered from the same ailment but could not afford the drug. In November, 1998, he died, and Achmat found a new cause. Speaking at Nkoli's memorial service, he announced the formation of the Treatment Action Campaign.

At the same time that Achmat and several activist friends were organizing TAC, a thirty-six-year-old Zulu woman named Gugu Dlamini disclosed on radio and television that she was H.I.V.-positive. Although more than three million South Africans then had H.I.V., fewer than a hundred had spoken openly about their disease. In the West, AIDS had been stigmatized by its association with homosexuals, drug users, and contagious death. In Africa, where AIDS mainly affected heterosexuals, the infected were commonly branded as promiscuous, unfaithful sinners. Three weeks after Dlamini spoke out, she was knifed to death by a group of neighbors. Some of the attackers were rumored to be her ex-boyfriends.

Both Mbeki and Achmat expressed dismay over Dlamini's murder. "We have to treat people who have H.I.V. with care and support, and not as if they have an illness that is evil," Mbeki said. Achmat spoke out in a different way. He recalled an apocryphal but inspiring tale about Christian X, the Danish king. The monarch was said to have begun wearing the Star of David after the Nazis invaded his country, in 1940. His action, legend had it, prompted Gentiles throughout Denmark to do the same: Jews would feel embraced and the Nazis would have trouble finding their targets. TAC had a hundred T-shirts printed. On the back of each shirt was a photograph of Dlamini and the words "Never again." On the front, in purple lettering, was the phrase "H.I.V. POSITIVE."

In April, 1999, Edwin Cameron became the first government official in South Africa to announce publicly that he had H.I.V. The judge revealed his status on national television, becoming his country's Magic Johnson. "I'd fallen sick with AIDS and been brought back to life by the medicines, and I held public office," he told me. "This was something I couldn't not do." Cameron had no idea how people would respond. "I thought I might be reviled," he said. Several days before admitting his condition, Cameron, driving home from a friend's house, became so racked with fear that he pulled his car over to the side of the road, rested his head against the steering wheel, and burst into tears. The day after his announcement, however, Cameron arrived to work to find his office filled with flowers. "The country had been waiting for someone in public life to come out," he said.

Although Cameron had been courageous, the fact that he was white and upper middle class made him an imperfect spokesperson for South Africa's AIDS epidemic. Achmat felt that the AIDS movement needed a figurehead, and impetuously decided to put himself in the position of the millions of South Africans who couldn't afford the medicines that were keeping Cameron alive. He would stage his drug strike.

Achmat made the announcement at a workshop for AIDS groups. "The truth is, with the right medication, H.I.V./AIDS is like diabetes -- it can be managed," he said. "The only reason we don't have this medication in South Africa is because we are poor, not because it doesn't exist." To force change, he said, he would risk his own life.

Cameron opposed Achmat's stand. "There's an element of hubris to any form of martyrdom," Cameron said. "He was expressing Zackie rather than the issue." Their friendship was strained for several months. Still, there was no question that Achmat's extreme act helped TAC gain notoriety. The organization set up field offices in Durban and Johannesburg. The group's membership grew rapidly, especially among young people. Some signed up out of nostalgia for the anti-apartheid struggle, but most joined for a more personal reason: the loss of loved ones. The longer the epidemic raged, the stronger TAC grew. "For most people, it's the fact that their brother or sister or their aunt or their mother or their neighbor is going to die," Achmat said.

The township of Mitchell's Plain is separated from Khayelitsha by a large sand dune. It is slightly wealthier than its impoverished neighbor, yet in March it seemed enveloped in gloom. Nyameka Ndashe, a twenty-one-year-old resident, recently dropped out of school to take care of her ailing mother. Her stepfather, she said, had infected her mother with H.I.V. several years ago; Ndashe had since run him out of the house. "He knows he better not come anywhere near here," she said. Ndashe's three-year-old brother, who was born with H.I.V., died last year.

Ndashe's mother urgently needed antiretroviral therapy, but it was unavailable in Mitchell's Plain. Ndashe took me to visit her mother, who was in the hospital. She was barely visible beneath the covers of her bed. Up until December, Ndashe told me, this skeletal woman was healthy enough to work full time as a domestic helper and part time as a church volunteer. Then, suddenly, she developed AIDS. In the last five weeks, her weight had dropped from a hundred and forty-six pounds to ninety-five pounds. She had also lost her hearing and begun muttering to herself. Ndashe hadn't visited in several days. Observing her mother's head bobbing up and down, Ndashe pleaded with her to stop. Her mother said, faintly but firmly, "I can't stop. I'm losing my mind." She had contracted tuberculosis, which often exploits the weakened immune system. The doctor told Ndashe that the disease had made its way to her mother's brain.

When her mother's condition worsened, Ndashe became a volunteer for Achmat's organization. TAC, she hoped, would bring antiretrovirals to Mitchell's Plain. A social worker stopped by her mother's bed, and Ndashe began pressing her about antiretroviral therapy. The social worker shrugged. The medicines are too expensive for the government to afford," she said. Ndashe reminded her that the government would save money if it offered the drugs rather than paying for the extended hospital stays of AIDS patients and shouldering the loss to South Africa's workforce. The social worker wasn't swayed. "The medicines have toxic side effects," she said.

"Yes, but look at the side effects from not taking the medicines," Ndashe said. She pointed to her mother, who had turned to face the wall. "You have to go to Khayelitsha to believe it," Ndashe said, springing up from the edge of her mother's bed. "There the people with H.I.V. are so healthy they walk around like this!" Ndashe, a slender young woman who is more than six feet tall, puffed out her cheeks and curved her arms in front of her, suggesting the shape of a belly. She ambled across the filthy, cracked tiles of the hospital ward, imitating the fleshy Khayelitsha patients who had been brought back to life. When she sat back down, her laughter quickly faded as she glanced at her mother. "Zackie better hurry," she said.

When Achmat first made his drug pledge, his primary target was the Western pharmaceutical industry, not the A.N.C. He understood that the government could not possibly subsidize antiretroviral treatment until drug companies agreed to drop their prices -- or their patents -- in South Africa. "We didn't want to burden our government with a bill that it couldn't afford," Achmat recalled. There was also a tactical reason for targeting the drug industry first. If anything could rally activists who had been dormant since apartheid, it was a big-business enemy with a reputation for greed and callousness.

TAC decided to publicize the plight of the most helpless segment of the country's burgeoning AIDS population: babies. By 1999, some forty-thousand babies were being born each year to H.I.V.-positive mothers in South Africa. A short course of AZT given to infected pregnant women would diminish by half the likelihood that the newborn would inherit the virus. Yet the regimen's cost -- fifty dollars -- was prohibitive for most South Africans. By highlighting the deaths of innocent children, TAC's campaign aimed to shame AZT's manufacturer, Glaxo, into lowering the price of the drug.

The A.N.C. supported Achmat's campaign. "If you want to fight for affordable treatment, then I will be with you all the way," Dlamini Zuma, the health minister, said. In a joint statement, Achmat and Dlamini Zuma called upon business, labor, and religious organizations to pressure Glaxo to lower prices.

The government seemed to be waking up to the AIDS crisis. It had launched a prevention campaign, erecting, billboards that promoted abstinence and safe sex. The health ministry had increased free condom distribution from six million in 1994 to a hundred and ninety-eight million in 1994 to a hundred and ninety-eight million in 1999. Achmat even felt that he had the implicit support of Mbeki, whom Mandela had chosen as his successor. In a speech, Mbeki had accused the pharmaceutical companies of profiteering. "As long as it is only available at exorbitant prices," Mbeki said of AZT, "it makes it impossible for the government to make it available to ordinary people." As Achmat saw it, "We were fighting on the same side."

Next Â» | "South Africa was now free to produce generics, yet its newly elected President, Thabo Mbeki, was developing doubts about the safety of antiretroviral drugs..."