State of Denial

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

The AIDS Rebel


Khayelitsha is a sprawling, ramshackle township on the outskirts of Cape Town, South Africa. Most of the settlement's residents live in huts that have been constructed with corrugated tin and insulated with cardboard, plastic tarps, and sheet metal. More than five hundred thousand people live in the township; half are unemployed, and the average monthly wage is less than a hundred dollars. The dominant language is Xhosa. Although Khayelitsha resembles a squatter's retreat, it was in fact designed by the apartheid government. In 1983, the white regime decided to purge blacks from settlements close to the heart of Cape Town. The authorities dumped the evicted residents in Khayelitsha, which means "Our New Home." Houses were laid out in a grid pattern to help the police control disgruntled inhabitants. Since then, many families have established roots in Khayelitsha, but the crowded, unsanitary neighborhoods have also become home to viruses and germs. Khayelitsha has long had one of the highest tuberculosis rates in the world, and in recent years it has been decimated by AIDS. About fifty thousand people are infected with H.I.V.

On a warm March morning, a man named Zackie Achmat walked through Khayelitsha's dusty streets. He wore a white sweatshirt bearing a large message in garish purple letters: "H.I.V. POSITIVE." It was a typically audacious gesture by Achmat, a former male prostitute who has become South Africa's most prominent AIDS activist. He is the chairman of the Treatment Action Campaign, or TAC, a grassroots movement that works to secure life-saving AIDS medicines for poor South Africans. Achmat, who is forty-one years old, is the most important dissident in the country since Nelson Mandela. He looks nothing like his elegant predecessor, however. His skin is golden, reflecting his Malaysian heritage, and his wide, boyish face is incongruously framed by chic, horn-rimmed spectacles.

Achmat, who lives in Muizenberg, a pleasant coastal town twelve miles from Khayelitsha, received a mixed greeting from the locals. Some people shuffled by him, straining to avoid eye contact. For them, Achmat is an unwelcome reminder of an unstoppable and unspeakable menace. South Africa has five million H.I.V.-positive people, more than in any other country. (If the disease were as prevalent in the United States, more than thirty million citizens would have H.I.V.) A more common reaction to Achmat, however, was awe. People gaped and whispered as he passed by, as if he were a pop star. A few had the nerve to approach. "Zackie, thank you for all you've done," one woman said. "Please keep fighting."

Achmat pumped his fist and nodded. "We will," he said. "And we'll win!"

A few minutes later, Achmat came across a pair of teen-age girls walking arm in arm. One wore an "H.I.V. POSITIVE" shirt just like Achmat's, which had been given to her by the local TAC branch.

"Khayelitsha fashion," Achmat said. He then passed an older woman planting vegetables in a small garden patch. She, too, was wearing an "H.I.V. POSITIVE" shirt. Her face lit up when she saw him. "I have seen you only on television," she said.
Achmat pointed to a "Wanted" poster that had been plastered to a nearby telephone pole by TAC supporters. The poster featured head shots of the health minister and the trade minister, both of whom were high-ranking members of the African National Congress, or A.N.C. The government has refused to distribute drugs like AZT to the public, and, in response, TAC was charging the officials with "culpable homicide." Such pugnacious rhetoric repelled some South Africans, but Achmat said it was justified.

Achmat's real adversary is not the A.N.C. bureaucracy but its leader, Thabo Mbeki. A cerebral, proud man credited with helping to negotiate South Africa's remarkable transition to democratic rule, Mbeki succeeded Nelson Mandela as President in 1999, with the goal of fostering an "African renaissance." He celebrated the idea that African solutions could be devised for African problems. Mbeki's insistence on self-reliance became corrosive, however, when he applied it to AIDS. He denounced Western antiretrovirals, which suppressed the H.I.V. virus, as "harmful to health." He even questioned the link between H.I.V. and AIDS. Mbeki's stance not only bewildered people outside South Africa; it alienated many of his supporters at home, including Achmat.

At 10 A.M., Achmat arrived at a small white bungalow. The building housed the AIDS ward of the local health clinic. He stepped inside reluctantly. 'Too many sick people," he muttered. "I hate missionary work." Once indoors, however, he chatted warmly with patients and staff. The Khayelitsha AIDS ward represents a triumph for Achmat. It is the first public clinic in South Africa to have begun offering antiretroviral therapy. The program is run by Doctors Without Borders, the international humanitarian organization; to save money, the clinic imports generic AIDS drugs form Brazil.

The H.I.V. clinic is led by Eric Goemaere, a Belgian doctor. When Goemaere came to South Africa, in 1999, he had hoped to set up a drug-therapy program in Johannesburg. He was rebuffed by government officials, who said that antiretroviral medicines weren't affordable. Goemaere packed his bags. On his way back to Belgium, he stopped in Cape Town to have dinner with Achmat, whom he knew only by reputation as a charismatic campaigner for AIDS treatment. Achmat immediately persuaded Goemaere to stay. He told Goemaere that a group of renegade A.N.C. officials in Khayelitsha had just staged a revolt and begun administering AZT to pregnant mothers, with the goal of reducing H.I.V. transmission to newborns. Goemaere agreed to meet with these A.N.C. officials, and soon took over the Khayelitsha program.

Three hundred and eighty men and women are now enrolled in an expanded antiretroviral program, and in ninety-two percent of them, Goemaere said, the virus had been suppressed to the point of being undetectable. "The medicines are incredible," he said. Despite claims by some American officials that Africans would not be able to stick to the complex drug regimens, the clinic's patients were even more fastidious than those in the United States.

Goemaere's program had also helped to alleviate the shame that many Africans felt about being infected. Most patients entered the AIDS ward without embarrassment, in full view of the community. "Much of the stigma around H.I.V. is because it has been seen as a disease of automatic death," Goemaere said. "If we offer people hope that they can live with the disease, then the stigma begins to fade." He added that far more Khayelitsha residents were asking for H.I.V. tests. "This is the impact of treatment on prevention," he said.

As word of Khayelitsha's "miracle clinic" has spread, infected South Africans from all across the country have attempted to gain entry. One young woman from Langa, a neighboring township, was so desperate for medicine that she assumed the identity of a cousin from Khayelitsha. Unsuspecting doctors admitted her into the program, but generally only Khayelitsha residents are eligible for antiretrovirals. Even with this limited scope, the clinic cannot meet the demand. Thousands of locals need antiretrovirals, and Khayelitsha's pilot program can afford to treat only a fraction of them.

"Does anybody have medicines here?" Achmat asked a group of patients crowded inside the clinic's small waiting room.

Out of twenty people, two patients raised their hands. One woman said that she had started antiretroviral therapy last year, after falling sick. She had since gained fourteen pounds and returned to work. "I'm feeling great," she said. She then pulled back the lapel of her shirt to reveal dark bumps along her neck and shoulder; a rash is an occasional side effect of taking antiretrovirals.

"So will you stop taking the medicines?" Achmat asked.

"No way," she said, wagging her finger. "Never!"

Achmat smiled. Although he is H.I.V.-positive himself and needs antiretroviral drugs, he does not take them. In 1999, Achmat began the world's first drug strike. "I will not take expensive treatment until all ordinary South Africans can get it on the public-health system," he announced. "That probably means I will die a horrible death, even though medical science has made it unnecessary." Achmat has since fallen ill; his pledge, however reckless, has made him a hero to many poor South Africans.

Before Achmat left the clinic, he spoke with some nurses. "Why do you fight so much, Zackie?" one asked. They were referring to the images of Achmat in that week's newspapers depicting their normally cheery spokesman shouting "Murderer!" at the country's health minister, Manto Tshabalala-Msimang. For years, Achmat had managed to maintain warm ties with many A.N.C. officials even as he fought for change. In late March, he gave up, and TAC launched a national civil-disobedience campaign against the A.N.C. -- his own party. "It's really not nice at all," he told the nurse. "But we have to get the government to give us the medicines.'

Achmat is a determined fighter, but so is his opposition. The government has suspended doctors who furtively supplied antiretrovirals to their patients. For nearly two years, Mbeki has refused to grant interviews about AIDS, but his deputies made it clear to me that they and the President still believed that antiretrovirals were dangerous -- and that the "H.I.V. model" was at best a theory. "Western scientists once said to us the earth was flat," a senior A.N.C. official told me. "Now we know it's round. I bet one day we look at AIDS the same way." When the truth at last emerges, she added, "The world will have President Mbeki to thank."

Achmat grew up in a Muslim community on the Western Cape during the nineteen-sixties. It was the height of apartheid, and he was labeled a "colored" child because of his Asian ancestry. His father was a member of the Communist Party; his mother and his aunt were shop stewards who organized union protests. Achmat, who was appalled by the treatment of black workers at his mother's factory, quickly became a radical himself. He had an additional reason to become politicized: he was gay. "These elements were recipes either for fascist sympathies or for socialist sympathies," Achmat recalled, grinning.

In the nineteen-seventies, school boycotts became a popular form of civil disobedience against apartheid. Although the coloreds typically joined blacks in striking, Achmat noted that his ethnic kin were often the first to cave in and scurry back to school. Achmat decided that a new approach was necessary. "Instead of convincing colored kids to continue the boycott, I thought it might be easier if I just made it impossible for them to attend school," he said. During the Soweto uprisings of 1976, Achmat, who was fourteen years old, set his high school on fire. Nobody was injured. (He now seems embarrassed by the incident.) He was jailed for three months, and endured severe beatings. By the time Achmat was eighteen, he had embraced Trotskyism and been arrested five times. In a 1980 prison stint, he joined sixty other detainees in staging a landmark hunger strike, which won the inmates beds, books, and radios. Achmat saw how effective the threat of mortal sacrifice could be.

In the years that followed, Achmat, who was often unemployed, turned tricks for money. He heard talk of a "gay plague" striking down men in North America, but he didn't take the threat seriously. He visited bathhouses and indulged in the sexual freedoms of a liberalizing South Africa. Like many A.N.C. loyalists, he felt that Western governments were hyping the dangers of AIDS. "It seemed far-fetched that a disease would conveniently kill fags, prostitutes, drug users, and blacks," Achmat said. "Doesn't it sound like propaganda? It was a Reaganite wet dream!" The fact that re retained his health made him dismiss further warnings.
In 1990, Mandela was released from prison, and the white government agreed to dismantle apartheid. Achmat was poised to celebrate when, after a routine doctor's examination, he learned that he had H.I.V. "First, I went into denial," he said. "Then I fell in to the most profound depression. We had just won our freedom -- it was the most exciting time in this country's history -- and I was preparing for death." He didn't leave home for six months. He rented hundreds of films on video, ordered takeout, and girded himself for the end.

"My doctor told me I had six months to live," he recalled. "When I looked around after six months and noticed I was still alive, I concluded it might be time to leave the house." Achmat decided to channel his political fervor toward ending discrimination against gay South Africans. He had never studied law -- indeed, because he had been a teen-age revolutionary, he had never graduated from high school. Yet he had a flair for persuasion, a talent that would serve him well in a courtroom.

In 1994, Achmat founded the National Coalition for Gay and Lesbian Equality. He initiated a campaign to incorporate gay rights into the new South African constitution. Achmat won successive victories at the Constitutional Court, helping to bring about the decriminalization of sodomy. "It was a right in which I had an obvious self-interest," he told me.

Achmat also became involved in AIDS activism. An openly gay judge named Edwin Cameron had recently created an advocacy group called the AIDS Law Project, and he hired Achmat. "I had the formal skills of an experienced lawyer, but Zackie had the guile of a street fighter," Cameron said. Achmat became close friends with Cameron, who had been one of only a few white lawyers willing to defend A.N.C. guerrillas under apartheid.

It was predictable that the apartheid regime would do little about a disease that mainly afflicted poor black people, but the A.N.C. proved to be surprising inattentive to AIDS. Mandela, a traditional African elder, was uncomfortable speaking publicly about sex. South Africa's disorganized new government was struggling to provide basic services: housing, electricity, water, and jobs. Gun-wielding Zulu secessionists and powerful white elites had to be placated. With so many pressing problems to confront, the government regarded the country's soaring H.I.V. infection as an abstract worry.

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