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Created: May 9, 2003
Latest Update: May 9, 2003
May 10, 2003
In Grip of AIDS, South African Cries for Equity
By GINGER THOMPSON
[M] UIZENBERG, South Africa -- It's not unusual to sense urgency in a dying man. For Abdurrazack Achmat, every emotion — rage, fear, pride — feels magnified by a factor of five million.
That is the estimated number of people in South Africa infected with the virus that causes AIDS, one of the largest H.I.V.-positive populations in the world. But although they are mighty in number, Mr. Achmat said, these masses have been rendered "nameless and faceless" by a government that perpetuates confusion about the origins and magnitude of their disease, while refusing to follow the example of other African countries and make life-prolonging antiretroviral drugs publicly available as treatment.
With a death toll of at least 600 people a day, the struggle by AIDS patients' for recognition and public medical care is widely held to be as pivotal to the future of this new democracy as the fight against apartheid was under the white-minority government that fell out of power nearly a decade ago.
To these millions, Abdurrazack Achmat, 41, known as Zackie, is their Nelson Mandela. Like this country's revered freedom fighter, Mr. Achmat has made clear that he is willing to die for his cause. Even though he can afford the drugs, known as ARV's, Mr. Achmat vowed five years ago not to take the medicines until the government made them available to everyone infected with H.I.V.
But today this activist is at a crossroads. His body has been so weakened by numerous opportunistic infections that Mr. Achmat says his doctor warns him to start antiretroviral treatments now, because tomorrow could be too late.
He lives a cycle of sickness and health that keeps his supporters and friends on an emotional roller coaster, and a frightened Mr. Achmat on antidepressants. During a recent interview in a coffee shop not far from his home in this quaint seaside village near the southern tip of Africa, Mr. Achmat was upbeat and radiant with color, though he said he was so sore he felt as if his body had been used as a punching bag. One week before, he was struggling with a serious chest infection that kept him in bed for days.
"The truth is, this is a very difficult position for me," Mr. Achmat said. "I desire to take my medicines. Of course I do."
Then the five million people crashed in on his conscience. He recalled all the hugs he had received from people sick with AIDS during a recent demonstration. One of them, Mr. Achmat said, was a teacher who was sick the previous week with an infection and high fever. "She told me her body got strength from my fight," Mr. Achmat said. "If I take medicines, how could I look her in the face? Lots of people are hanging on because I hang on."
It is a stand that has some of Mr. Achmat's friends worrying about a misguided martyr's complex. Meanwhile, Mr. Achmat has won recognition around the world. Nelson Mandela praised him as a role model. This month, he was named as one of Time magazine's 35 world heroes. In the coming days he will be named one of the winners of the Jonathan Mann Award for Global Health and Human Rights, presented by the Global Health Council.
"When Mahatma Gandhi went on his hunger strikes, a lot of people thought he was killing himself for no good reason," said Dr. Nils Daulaire, president of the Global Health Council. "But he has made a moral judgment that by taking this position he can have greater impact. That is what I call moral courage."
But just beneath the defiant facade is a man racked by frailty, fear and a fractured life. Mr. Achmat does not hold himself up as an example to the striving people he leads. He strives with them. He is a gay man of color who abandoned his Muslim roots for the teachings of Trotsky, then dropped out of high school and into a life marked by sex for money, and imprisonment during this country's violent black power struggle.
THE tall brown-skinned man, with the distinctive features of the Malay people, who were first brought here in the 1800's as slaves, is one of six children born to a devout Muslim furniture salesman and a seamstress. His home was torn by his father's violent fits against his mother. Then when he and his sister Taghmeda told their parents they were gay, both were virtually disowned.
"His last words to me were that I should be stoned to death," Mr. Achmat said of his father.
As a young man, Mr. Achmat joined the fight against apartheid not only because he saw it as a just cause, but also because it gave him a place to vent the frustrations over his sexuality. He tried to burn down his school at the age of 14 to protest laws that required black children to learn the Afrikaans language of the white minority. He was jailed for his activities so many times that he did not finish high school. When he was not spending nights in jail, he was often living on the street.
In a published essay called "My Childhood as an Adult Molester," Mr. Achmat described how as a teenager he had read everything from Shakespeare to True Confessions — and how he sought sex with men in public toilets, the only place where a gay boy in puberty could explore his sexuality.
"Almost all the men were scared to touch me because of my age," Mr. Achmat wrote. "But once they discovered that I was into it, they enjoyed themselves."
By the time he emerged from the underworld, South Africa was emerging from white-minority rule, and Mr. Achmat entered a new struggle. His doctors diagnosed his H.I.V. in 1990, and gave him six months to live.
CONFUSED and scared, he cut himself off from family and friends, and spent his time watching mindless action movies, waiting for death with Arnold Schwarzenegger. But death did not come. So he began to make movies, many of them about gay and lesbian life, and to work on an English degree from the University of the Western Cape.
Mr. Achmat helped found the National Coalition for Gay and Lesbian Equality, and joined legal efforts that strengthened antidiscrimination laws and decriminalized sodomy. Then in 1998, already a prominent gay activist, Mr. Achmat disclosed that he was infected with H.I.V. He set up the Treatment Action Campaign to press the government for antiretroviral treatment.
Since then, obstacles to AIDS treatment here have begun to fall, due in no small to part his efforts. The cost of ARV's has plummeted to less than $2,000 a year from about $10,000, with numerous employers offering treatment for less. In 2001, Mr. Achmat's politics of shame helped the government defeat a lawsuit by the world's leading pharmaceutical companies that aimed to keep developing countries from importing medicines at the lowest rates. Last year, Mr. Achmat stood against the government in a lawsuit that forced President Thabo Mbeki to make antiretroviral drugs available to pregnant women.
In recent months, his group turned up pressure to make the drugs available to all people with AIDS by organizing a civil disobedience campaign. In the highest-profile demonstration, Mr. Achmat interrupted a speech by Health Minister Manto Tshabalala-Msimang, shouting before a national health conference that she was a "murderer."
he action sparked a backlash against the Treatment Action Campaign, but at the Olympic Cafe, Mr. Achmat was not apologetic. He said he and five million others are running out of time for politeness. Last month, he said six TAC members died of AIDS-related illnesses.
Every day Mr. Achmat is haunted by his own death. He tries to avoid it, he says. He does not visit friends in hospitals anymore. He avoids funerals, even funerals of family members. While he has committed himself to dying, friends say he still struggles to reconcile with death.
It is clear, but seldom spoken, that he is burdened with doubts about his pledge. In interviews his closest friends said that at times they sensed that he wished he could take it back. They said that no one, especially Mr. Achmat, ever dreamed that the government would withhold ARV's as AIDS treatment for so long. What is worse, they said, is that if Mr. Achmat dies now, there is the real chance that his death would not help his cause.
Mr. Achmat acknowledged the same, fidgeting as if uncomfortable in his own reasoning. "The government won't care one bit if I die," he said. "I don't think it will make a bit of difference in their policy."
Copyright 2003 The New York Times Company