“They say it’s TB,” she said, “but I don’t believe them. The treatment was working before. I don’t know why it’s not working now.”
Costa Gazi, the doctor who had first alerted me to the possible problems on the Kalafong trial, is a member of Parliament for the Pan-Africanist Congress of Azania, or PAC. The PAC split off from the African National Congress in the late 1950s, and its first leader, Robert Mangaliso Sobukwe, led the protest against the notorious Pass Laws that erupted into the Sharpeville massacre in 1960. Famous for their slogan “One Boer, One Bullet,” the PAC took a harder line against whites than the ANC did. Today, the PAC calls for racial reconciliation and for the redress of such lingering roots of inequity as corruption, crime, and poor health care and education, which it claims the ruling African National Congress is not dealing with effectively. Some PAC policies seem eccentric, such as calling for a repeal of the ANC’s ban on cigarette advertising in order to preserve the tobacco industry and advertising jobs, or for the establishment of an office for traditional African kings inside the president’s office. The PAC is today a beleaguered party, having won only three seats in the 1999 elections. Nevertheless, what remains of the PAC is very outspoken, and often controversial. In April 1999, Gazi himself accused Nkosazana Zuma, who was then health minister, of manslaughter for not providing AZT to pregnant HIV-positive women. He was later fined R1000 (about $160) for “bringing Zuma into disrepute.” He is contesting the charge.15
Confirming what Dr. Gazi had told me about what had happened at Kalafong proved extremely hard to do. He put me in touch with another PAC MP named Patricia de Lille, whom I met in Cape Town. She told me what she had heard about the Kalafong trial, and she explained that she felt monitoring procedures on clinical trials were inadequate, and that the government was wasting time with the dissidents. De Lille then referred me to a lapsed Anglican priest in Johannesburg named Johan Viljoen.
Last winter Viljoen spent five months working with the Motivation and Educational Trust, an AIDS organization that runs a support center for HIV-positive people based at Kalafong hospital. Around Christmas, a few months after he started working for the Motivation and Educational Trust, Viljoen began to hear disturbing reports from some of its clients who had been participating in the AIDS drug trial run by Dr. Steenkamp at Kalafong.
“Many of the people on the trial knew each other. I got involved when some of them started coming to me and telling me about this one that died, and then that one. People were really worried. There was this spate of four or five deaths right before Christmas.” According to what the patients told Viljoen, four women who went on the trial in October were dead by Christmas, and a further five women and one man, including Andrew and Molly, became very ill after taking the pills they were given. Then, in April, another woman died.
Viljoen gave me copies of signed testimonies that he had collected from the six patients who said they had become ill on the trial, and from a man who said his mother had died. All these patients, including Andrew and Molly, testified that they were HIV-positive; they all named Dr. Steenkamp and all said that she had put them on a clinical trial. Only one of the testimonies specifically named the American pharmaceutical company trial, however. The symptoms the patients described were very strange. “I developed severe headaches and fevers, I felt extreme stress, depression, and anger,” testified one woman. Another woman said, “I began to experience muscle cramps, spasms, and fits. I also feel stress, to such an extent I feel I might get a stroke.” Another wrote, “In February 2000, I began to have a serious rash, all over my body.”
Viljoen became an Anglican priest in the mid-1980s. At the time, South Africa was practically at war with its own people. In the townships and homelands, the anti-apartheid struggle erupted into a nearly constant series of battles between factions of black freedom fighters and the state security forces, which were using their most devious and cruel tactics to keep their grip on the country. There were raids, firebomb and tear gas attacks, torture, detentions, and murders, and this was exactly where Viljoen wanted to be. “I wanted to really live and work with people in the townships,” he told me, “and the clergy were the only white people who were allowed to do that. There was always something going on, there were riots practically every week, and all the sermons I gave were about politics and how we had to do something about the injustices of apartheid.” After the trouble began to die down, Viljoen quit the priesthood, which he found bureaucratic, and went to work with a Catholic refugee organization in Mozambique, Angola, and South Africa.
“I’m a real Afrikaner,” Viljoen told me. “My ancestors came over from Europe in the 1600s, they were in the Great Trek, the Boer War, the whole thing.” Viljoen’s father was a diplomat for the apartheid government, and the family moved around a lot, to Switzerland, Italy, Israel. While I was in South Africa, I met a number of young whites who told me how hard it was for them to understand how their parents, who might have been perfectly nice people, could have lived under apartheid without horror, and could have tolerated its injustices. I wondered how Viljoen felt about that, and whether it had influenced his decision to work with disadvantaged people. “I didn’t decide to do good works because I felt I had to make reparations or anything,” he said, “but I guess I had seen both sides of South Africa, and I wanted to work to make it a better place.”
In the fall of 1999, Viljoen met Father Barry Hughes-Gibbs, the Anglican priest who runs the Motivation and Educational Trust. “Father Barry called me up and told me that he and his wife had had a vision that I would quit my job working with refugees to go to work with him at the Motiva-tion and Educational Trust.” Viljoen is himself HIV-positive. “I guess that did influence my decision to take the job. I felt I had something to offer those people.”
There was something about Viljoen’s account that did not make sense. The patients’ complaints were so varied and so strange, and many of them did not correspond to any known side effects of anti-retroviral drugs. In retrospect, I should have wondered more about the situations they described in their testimonies. It was certainly possible that these patients were not, after all, on a trial of anti-retroviral drugs sponsored by an American company. Perhaps they were entirely mistaken about being on any sort of trial, or perhaps they were on a different trial altogether. No proof of any wrongdoing by any person involved in the trials emerged, but much remains unclear. In any case, I wanted to know whether the government, or any other authority, was doing anything to find out what had happened.
I had heard that a report on the American AIDS drug trial had been drafted within the Health Ministry, but that it had not been made public. I very much wanted to speak to someone who had read it. In addition, I wanted to discuss the other controversies surrounding AIDS and its treatment in South Africa, such as AZT for pregnant women and Mbeki’s relationship with the AIDS dissidents. But one by one, most of my appointments were canceled.
One senior government scientist changed our appointment six times and then left on a trip to the United States. Many others never returned phone calls, e-mails, or faxes. Dr. Nono Simelela, the head of the AIDS directorate in the Ministry of Health, agreed to meet me in Pretoria on the Thursday after I arrived. When I turned up at her office, her assistant told me that Dr. Simelela had been called away suddenly, just fifteen minutes previously, to the Director General’s office. I was introduced instead to Cornelius Lebeloe, who is in charge of counseling, testing, and support of AIDS patients. He told me he was not allowed to talk about the AIDS dissidents, the government’s position on AZT for pregnant women, or the trial at Kalafong. When Dr. Simelela appeared an hour later, she said she was too busy to talk to me.
“How about tomorrow?” I asked.
Dr. Simelela opened her diary.
“OK, call me at ten in the morning on Tuesday.”
When I phoned Dr. Simelela the following Tuesday, I was told that she was out. Her assistant suggested I call again on Friday morning at nine. On Friday morning, Dr. Simelela was not in the office. I called several times the following week, but Dr. Simelela was either out of town, in a meeting, or otherwise unavailable. After I returned to New York I sent an e-mail, requesting an interview by phone. I have yet to receive a reply.
I also arranged to meet Dr. William Makgoba, the head of the South African Medical Research Council. Dr. Makgoba had attended the presidential AIDS panel where the AIDS dissidents had made their presentations. He was an outspoken critic of the President’s policies on HIV and of the anti-AZT policy, and he considered the AIDS dissidents “pseudo-scientists.” However, Makgoba is also an ideological ally of Mbeki’s. He recently edited a book of essays called African Renaissance,16 which includes a preface by the President. In South Africa, discussion of the anti-AZT policy and the President’s relationship with the AIDS dissidents usually involves speculation about the President’s psychology. What could he possibly be thinking? Mbeki takes the African Renaissance very seriously, and I thought Makgoba, if anyone, might have some insight into how it could be influencing his thinking on AIDS.
The African Renaissance was conceived by black intellectuals in order to supply Africa with a founding ideology that would inform development strategies that draw on African, rather than Western, models, and take account of African realities. It may, for example, provide an alternative to the kind of Western corporate exploitation that Mankahlana described in his article about AIDS in Business Day.
Observers often find the African Renaissance perplexing. How can anyone talk about an African Renaissance in the shadow of the Rwanda genocide and the wars that have broken out across nearly all of Central Africa, from Sierra Leone to Angola, to the Democratic Republic of the Congo, to Ethiopia, conflicts that seem to be pulling the rest of the continent down with them? Not to mention the floods in Mozambique, the drought in Ethiopia, the resurgence of malaria, and the AIDS epidemic?
P. Dickson, "AIDS Activists Set Up Watchdog Body," Mail and Guardian, February 4, 2000.↩
Cape Town: Mafube/Tafelberg, 1999.↩