State of Denial

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

The AIDS Rebel

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TAC joined the A.N.C. in supporting the Medicines Act, legislation that would make it possible for South Africa to override drug patents and provide more affordable generics. The measure had passed but never gone into effect, thanks to an intense lobbying effort by the pharmaceutical industry and the Clinton Administration. In February, 1998, thirty-nine drug companies had filed suit in Pretoria's High Court to stop South Africa from manufacturing generics. The drug companies argued that there would be no incentive for research and development if patents were not enforced. Charlene Barshefsky, the United States Trade Representative, threatened to punish South Africa with trade sanctions. Several other Clinton Administration officials, including Vice-President Al Gore, demanded the repeal of the Medicines Act.

In response, TAC positioned hundreds of protesters from AIDS groups, unions, and churches outside the American consulates in Cape Town, Durban, and Pretoria. "STOP BULLYING!" the signs urged Washington. TAC then teamed up with four advocacy groups: Doctors Without Borders, ACT-UP, Health GAP, and Consumer Project on Technology.

In June, 1999, in Carthage, Tennessee, just as Gore was declaring his intention to run for President, a dozen people interrupted his speech and began chanting, "Gore's greed kills!" The Vice-President looked aghast. The protesters continued to hound him along the campaign trail.Achmat and the other activists achieved their goal: the Clinton Administration removed South Africa from its sanctions watch list and ended its campaign against the Medicines Act. President Clinton announced that the United States would henceforth insure that "people in the poorest countries won't have to go without medicine."

South Africa was now free to produce generics, yet its newly elected President, Thabo Mbeki, was developing doubts about the safety of antiretroviral drugs. A high-ranking official in the health ministry had given Mbeki an advance copy of a book, "Debating AZT," which suggested that the drug was toxic. Mbeki, a micromanager who juggled a wide range of intellectual pursuits, decided to research the matter. He learned of an obscure group of academics and journalists who called themselves "AIDS dissidents." The group made three startling claims: H.I.V. was a harmless "passenger" virus; AIDS was a "life-style disease" caused by poverty and malnutrition; antiretroviral drugs didn't help patients, and often wrecked their immune systems. These views lacked scientific support. The Food and Drug Administration, the World Health Organization, and South Africa's own Medicines Control Council had all deemed AZT a safe, beneficial drug.

Nevertheless, in October, 1999, Mbeki, speaking before the National Council of Provinces, argued that "a large volume of scientific literature" claimed that AZT was "a danger to health." He continued, "It would be irresponsible for us not to heed the dire warnings which medical researchers have been making." Mbeki said that his new health minister, Manto Tshabalala-Msimang, would be entrusted with finding out "where the truth lies." At a conference in December, the minister was unequivocal. "Could you, with a clear conscience, introduce those toxic drugs to a woman and her child? She said. "I say no."

Mbeki telephoned David Rasnick, an American biochemist who disputed the idea that H.I.V. caused AIDS. "He asked me if I would support his efforts regarding AZT and AIDS," Rasnick later said. An intense e-mail correspondence ensued between Rasnick and Mbeki. Rasnick began contributing articles to the South African media. "The contagious H.I.V. hypothesis of AIDS is the biggest scientific, medical blunder of the twentieth century," he wrote in the Mail & Guardian, a Johannesburg newspaper. International health institutions, he wrote, were "terrorizing hundreds of millions of people around the world by their reckless and absurd policy of equating sex with death." Money should be steered not toward harmful antiretroviral drugs, Rasnick argued, but toward the improvement of nutrition and sanitation. Mbeki's photograph was posted on a Web site, Virusmyth.com, that promoted the views of Rasnick and other skeptics.

Edwin Cameron had first learned of the AIDS dissidents' views in the nineteen-eighties, shortly after receiving a diagnosis of H.I.V. He knew that the dissidents blamed the spread of AIDS on recreational drug use among homosexuals. "I was all too bitterly aware of the dissidents and their blame agenda," Cameron said, "but the thought that it would reach the mind and heart of our President..."

In March, 2000, Cameron and three civic leaders wrote Mbeki in defense of AZT. Sitting in his judge's quarters several days later, he heard the sound of paper coming through the fax machine. The President had responded to him directly. Cameron read Mbeki's sixteen-page reply with a "sense of fear and dismay." The President questioned the "available evidence" suggesting AZT was safe, noting that a similar "consensus" had once "existed on the use of Thalidomide."

Mbeki went public with his iconoclastic view. He argued that the AIDS epidemic had been cynically hyped by drug companies. "The reality is that the predominant feature of illnesses that cause disease and death among the black people in our country is poverty," he said.

Mbeki was partly right. Poverty had accelerated the spread of AIDS in Africa. Whereas a middle-class person who contracted herpes could easily be treated, a poor person with lingering sores was left highly vulnerable to H.I.V. Moreover, antiretroviral therapy required carefully calibrated doses. Failure to adhere to these complex regimens could inspire resistance to the drugs, rending them less effective. Although the Khayelitsha program had proved that antiretrovirals could be dispenses in poor urban townships, rural areas often lacked the proper infrastructure.

Nonetheless, the fact was that antiretrovirals helped patients live longer -- and H.I.V.'s role in causing AIDS had been confirmed by thousands of researchers. Yet Mbeki was starting to think like a conspiracy theorist. It was as if, having harbored dreams of African self-reliance, he couldn't quite bring himself to believe in a disease that could undermine all his grand plans. Mbeki denounced the notion that the disease had African origins as "wild and insulting." He insisted that his critics dismissed his arguments because they viewed Africans as "germ carriers, and human beings of a lower order that cannot subject its passions to reason."

While Mbeki's position was hardening, Achmat's organization was continuing its pressure on Glaxo to lower prices. TAC demanded that the company reduce the cost of AZT. H.I.V.-positive protesters picketed Glaxo's South African headquarters. They staged fasts and rallies in Durban, Cape Town, and Soweto. In March, 2000, TAC scored a big victory: Glaxo announced that it would halve the price of AZT in South Africa.

Mbeki was unmoved, however, by those who urged him to buy the drub. "I am taken aback by the determination of many people in our country to sacrifice all intellectual integrity to act as salespersons of the product of one pharmaceutical company," he said. Mbeki linked his stand to larger moral principles at the core of South Africa's post-apartheid identity, such as freedom of speech. Why was it, Mbeki asked, that the mainstream was trying to muzzle dissent? "Not long ago, in our own country, people were killed, tortured and imprisoned... because the established authority believed that their views were dangerous," Mbeki wrote in a letter sent in April, 2000, to U.N. Secretary-General Kofi Annan, British Prime Minister Tony Blair, and President Clinton. "We are now being asked to do precisely the same thing that the racist apartheid tyranny we opposed did, because, it is said, there exists a scientific view that is supported by the majority against which dissent is prohibited." He charged that those who were supporting the use of antiretrovirals were actually trying to poison blacks. A statement from the President's office likened antiretroviral therapy to the "biological warfare of the apartheid era." It said, "Our people are being used as guinea pigs and conned into using dangerous and toxic drugs."

Earlier that year, Mbeki had ordered the formation of an international AIDS advisory panel. The panel was made up of thirty-three scientists, two-thirds of whom subscribed to the standard H.I.V. model and a third of whom claimed it was false. The panel held its first meeting in May, 2000. World-renowned virologists and fringe scientists were given equal time. In the words of David Rasnick, the biochemist, "It was a victory from the moment we stepped off the plane."

The panel was lambasted in newspapers around the world. Dr. Jerry Coovadia, a physician at the University of Natal, wrote an op-ed in South Africa's Sunday Independent entitled "Leave Science to the Scientists, Mr. President." An op-ed in Newsday said of Mbeki, "A person can be so open-minded that his brains fall out."

That summer, South Africa hosted an international AIDS conference that drew twelve thousand delegates. People expected Mbeki to use the occasion to clarify his position. But in his keynote address Mbeki declared that extreme poverty, not AIDS, was "the world's biggest killer." Since poverty also broke down peoples' immune systems, Mbeki said, "We could not blame everything on a single virus."

These statements, combined with Mbeki's indulgence of skeptics like Rasnick, gave him a reputation for saying that H.I.V. didn't cause AIDS. In fact, A.N.C. loyalists told me, this was an exaggeration designed to humiliate the President. Essop Pahad, Mbeki's close friend and adviser, said, "He has never said it. You will never produce a shred of evidence that he said any such thing."

Whether or not Mbeki explicitly rejected the H.I.V. model, he subjected it to relentless challenge. Poverty may increase people's vulnerability to AIDS. But Mbeki's words implied that a variety of diseases that had always afflicted the poor -- like malaria and tuberculosis -- were suddenly being dressed up as AIDS. By attributing the AIDS epidemic to mass poverty and malnutrition, Mbeki sidestepped difficult questions about sex and responsibility. If AIDS was the "logical" outgrowth of economic deprivation, not unprotected sex, then it was easy to conclude that there was little that destitute Africans could do to same themselves. Mbeki championed African self-reliance, yet he had taken a stance on AIDS which treated his countrymen as helpless.

Achmat was stunned by the intractability of the A.N.C. leadership. When he initiated his drug strike, he had expected that the hardest part of his battle would be fighting companies like Glaxo. "Zackie got trapped," Cameron said. "When he made his pledge, there was no way he could have anticipated that the dissident position would so influence government policy."

Within Mbeki's inner circle, suspicion of antiretrovirals grew deeper. Some officials even suggested that keeping H.I.V.-positive people alive could accelerate the spread of AIDS. "If an infected person on retrovirals has an improvement in quality of life, he may stop preventive methods," Pahad told me. There was a brute logic to this argument, but TAC naturally insisted that allowing millions to die wasn't the proper response. Persuading people who being antiretroviral treatment to practice safe sex, Achmat argued, would more effectively rein in the epidemic.

Toward the end of 2000, Achmat flew to Thailand, where he bought five thousand capsules of fluconazole, the drug that had alleviated his thrush. In Thailand, the generic version was available for twenty-eight cents per capsule, whereas Pfizer was selling the patented form, Diflucan, for as much as eighteen dollars. Achmat passed through customs carrying three thousand capsules, and enlisted a South African soap-opera star to carry the rest. Doctors applauded TAC, but the government arrested Achmat on smuggling charges.

Nevertheless, after Achmat's Thailand stunt, Pfizer agreed to offer Diflucan free to public clinics in South Africa. Five major drug companies had announced discounts on antiretrovirals of up to ninety per cent in South Africa. Prices kept falling, increasing the pressure on the Mbeki regime to purchase the drugs and offer them free of charge in public clinics. By 2001, antiretroviral therapy that cost fifteen thousand dollars per year in the United States was available in South Africa for three thousand dollars; the government could likely have reduced the price to three hundred and fifty dollars by purchasing generic antiretrovirals from India. By that point, however, Mbeki had staked his reputation on the idea that the drugs were dangerous. The fact that they were not affordable could hardly justify a chance in course.

"We saw the government policy wouldn't change even with cheap drugs," Achmat said. "It was devastating."

Mbeki's intransigence began to inspire a revolt within the A.N.C. Party loyalists noted grotesque inconsistencies in government policy; for example, H.I.V.-positive members of parliament were covered by health plans that paid for the very medicines that were deemed too toxic for South Africa's poor. The trade unions, a core A.N.C. constituency, mutinied, and joined TAC in demanding that H.I.V.-positive worked be treated. South Africa's ambassadors abroad and its foreign minister began to complain that they could no longer advance the country's agenda. All anybody wanted to talk about, they said, was Mbeki's baffling views on AIDS.

Even the judicial system turned against the President. In August, 2001, a coalition that included TAC sued the government for failing to provide Nevirapine, an antiretroviral that was often used to curb transmission of H.I.V. from mothers to their newborns. The drug had been offered free by its manufacturer, Boehringer Ingleheim, but the government had refused to administer it, citing its alleged toxicity. TAC presented affidavits from pregnant mothers who had been denied the treatment they sought. Physicians described their eagerness to begin dispensing Nevirapine. "Doctors at this hospital have bought Nevirapine with their own money and are already administering it," Dr. Andrew Grant, the acting superintendent of a hospital in KwaZulu-Natal province, wrote. "We have seen no side effects on this regime (except extreme gratefulness)." South Africa's highest court ruled that Mbeki's government was violating the constitution. The state was forced to begin providing Nevirapine to pregnant mothers.

Most important of all, Nelson Mandela joined TAC's cause. Since leaving office, Mandela had begun to offer leadership on AIDS. He had called for pregnant mothers to be given AZT. He had said openly that he believed H.I.V. caused AIDS, a statement noteworthy only in South Africa. He had disclosed that he had lost a niece and two sons of a nephew to AIDS, become one the first A.N.C. officials to "out" his family members. But Mandela, an A.N.C loyalist, had delivered only oblique criticism of Mbeki. At one ceremony honoring AIDS workers, Mandela stumbled over his text, told members of the audience he had made a mistake -- then joked that at least he was willing to admit it when he'd done so. At a Soweto clinic, Mandela said, "If the government says, "Don't make any move until we have completed our research,' young people and babies are going to die in scores every day." He argued, "It is necessary to be broad-minded, not to feel that your ego has been attacked, if you listen to what the public is saying."

Mandela was in Barcelona last summer for an international AIDS conference, and Achmat, who had been scheduled to fly to Spain to speak but had contracted a lung infection, delivered video testimony from his sickbed. He described the success of Khayelitsha's pilot program. "Just because we are poor," Achmat said, "just because we are black, just because we live in environments and continents that are far from you does not mean that our lives should be valued any less." Mandela decided that he would go to see Achmat when he returned to South Africa. Mandela's visit to Achmat's home, in July, 2002, offered a kind of coronation. The local papers carried photographs of the two men together. They began to speak regularly by phone. "The sinner and the saint," Achmat like to say. In December, Mandela visited the Khayelitsha clinic. One patient presented Mandela with an "H.I.V. POSITIVE" shirt. The former President took off his floral shirt and put on the TAC shirt -- doing more with one gesture to lessen the stigma of H.I.V. than any South African before him.

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