AIDS Orphan's Preventable Death Challenges Those Left Behind

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Gail Johnson holds the hand of her foster son, young AIDS activist Nkosi Johnson

Nkosi Johnson died a hero in the battle against AIDS in Africa, but he was not a martyr. Martyrs are those who choose death in pursuit or in defense of their beliefs, but 12-year-old Nkosi did not choose death. Death chose him, even before he was born HIV-positive to a mother who died of AIDS before his third birthday. Back then, his adoptive mother Gail Johnson was told Nkosi had nine months to live, but he went on to be South Africa's longest surviving AIDS orphan. But it was not only his longevity that made Nkosi unique among the estimated 800,000 AIDS orphans in South Africa, whose number grows by 70,000 every year. Propelled into the media spotlight by the AIDS activist community, Nkosi Johnson became the human face of a plague to which the South African authorities had responded sluggishly.

The cute kid with the big, shiny eyes and warm, toothy smile shocked South Africa out of its denial as he traveled the country making public appearances, forcing his compatriots to acknowledge the humanity of AIDS sufferers and to bring discussion of the disease out into the open. "It's a great pity that this young man has departed," former President Nelson Mandela told reporters after Nkosi died early Friday. "He was exemplary in showing how one should handle a disaster of this nature. He was very bold about it, and he touched many hearts."

Indeed, South Africans credit Nkosi with forcing them to deal with AIDS sufferers as part of their community, rather than shunning them or denying their existence. And in a country where one in nine people is infected with HIV, that was a profoundly important breakthrough. But it couldn't end with simply acknowledging the problem. When he was invited to address last year's international conference on AIDS in Durban, Nkosi not only appealed for AIDS sufferers to be treated with love, warmth and respect, he scolded South Africa's President Thabo Mbeki — who remains skeptical about the accepted wisdom in the medical community that HIV causes AIDS — for failing to provide treatment to the country's AIDS population. Mbeki, who had addressed the conference before the boy, walked out during Nkosi's address, drawing fierce criticism from South Africans increasingly alarmed at his tin ear.

Like the overwhelming majority of South Africans infected with HIV, Nkosi's family was unable to afford the antiretroviral drugs commonly used to treat the disease in the developed world. An American benefactor began paying for such treatments last June, but physicians believe that by then it may have already been too late to save Nkosi. But most South African AIDS patients are so poor that their only hope of survival is free access to treatment drugs through the public health system. And Nkosi himself might have eluded his fate had his mother had access, during pregnancy, to AZT and other treatments known to prevent mother-to-child transmission of the virus.

The South African government has forced international pharmaceutical companies to back down from attempts to stop the country importing cheaper generic versions of patented AIDS treatment drugs. But even at the discount prices offered by manufacturers in India, the government of the cash-strapped African nation remains reluctant to invest the billions of dollars required to keep a burgeoning AIDS population alive. By inspiring them with his life and struggle to survive, Nkosi Johnson's dying has served as an indictment, not only of the South African authorities but of all the governments and corporations with the means to make a difference: The 12-year-old's death, after all, was preventable. But keeping Nkosi, and millions like him, alive and well has not yet become an overriding priority.