The legacy of a very courageous little boy

It was as if, even in death, Xolani Nkosi Johnson knew the symbolic importance of his life.

For more than five months, the little boy who became a compelling spokesman for those diagnosed with AIDS, clung tenaciously to life. When he finally succumbed, last Friday, it was on International Children's Day, almost 20 years to the date after the disease was first discovered in the United States.

Tomorrow, South Africa will bury 12-year-old Nkosi. His public struggle put a child's face on the plague ravaging a continent, and in particular, this nation, challenging the myths and misconceptions about the disease. He also helped create the momentum for recent changes in AIDS policy.

Among those advances are the opening of nursing homes for AIDS orphans and children with HIV in South Africa. Although he was confined to bed by the time a three-year-long court case brought by 39 international pharmaceutical companies attempting to block the purchase of generic drugs used to treat HIV, the government's victory was the long-awaited outcome of a battle in which he played a major role.

Two days ago, Pfizer announced it would increase the distribution of Diflucan, now offered free in South Africa, to 50 third-world nations. The Pfizer move comes just weeks before the UN General Assembly's special session on HIV/AIDS which is expected to adopt a global action plan to combat the epidemic. UN Secretary-General Kofi Annan has called for an annual fund of $7 billion to $10 billion to fight the disease.

Nkosi's "dream was for people to show compassion for infected people," said Gail Johnson, Nkosi's adoptive mother on the morning after his death. "Most of all, he wanted to make sure that infected children were cared for."

Doctors never expected that Nkosi, born HIV-positive and left as a baby at a refuge by his mother, would reach his third birthday. It's estimated that each day, 200 children diagnosed as HIV-positive are born in South Africa.

But Nkosi defied the prognosis of his doctors, becoming the country's longest-surviving HIV-positive child, and put a face on a disease that medical experts say could claim the lives of more than 3 million South Africans in the next decade, and leave more than 12 million orphans across sub-Saharan Africa.

Adopted at the age of 2 by Ms. Johnson, Nkosi first caught the public's attention in 1997 when he and his adoptive mother successfully fought for his right to attend the local public school. Last July, he took the spotlight at the 13th International AIDS Conference in Durban, South Africa, when he quietly pleaded for greater acceptance of people diagnosed as HIV-positive, and called on his country's government to provide anti-retroviral drugs.

By choosing to fight his battle with AIDS on a public stage, Nkosi helped reduce the shame of AIDS and in the process became a local hero. In February, although he was too sick to attend, his school held a birthday party for him, and even former South African President Nelson Mandela would inquire about the boy's health on his return from his diplomatic travels overseas. In fact, Mr. Mandela once called Nkosi an "icon of the struggle for life."

"After he came out, other people began coming out," says Busisiwe Ethel Mhlanga, a youth activist who attended a memorial service for Nkosi Wednesday. She says she has too many friends suffering from the disease, but many have "finally had the courage to admit they were sick after Nkosi."

His adoptive mother could not afford antiretroviral drugs that slow, but don't cure, the disease. She finally got help from an American donor near the end of his life. Nkosi had access to food, a warm home, the love of his mom and biological grandmother, and secondary medications that reduced pain and help manage AIDS-related diseases.

Nkosi and his mother used the international support he attracted after the Durban AIDS conference to try to provide loving homes for other children with AIDS. Together they founded Nkosi's Haven, a home where HIV-positive mothers and their children can live together, and Ms. Johnson has pledged to continue the fight she started with her adoptive son. Two other homes for AIDS orphans, one in Cape Town and another outside of Johannesburg, will also open soon.

"Nkosi made people realize that children die of AIDS," said Jackie Schoeman, director of Cotland's, a home and hospice for terminally ill children.

While the nation mourned the passing of Nkosi, Ms. Schoeman and her staff prepared to bury three of their own tiny AIDS victims.

In developed nations, the rate of transmission of AIDS from mother to child has been cut dramatically through the administration of a regime of drugs to the mother from early pregnancy. Pharmaceutical company Boehinger Ingelheim has offered to provide Nevirapine, a single-dose antiretroviral that can cut mother-to-child transmission by 50 percent, free of charge to developing nations.

Although South Africa has not yet applied for the company's offer and a national trial program for the distribution of Nevirapine has been stalled twice, three provinces have moved forward on their own to launch limited programs to reduce mother-to child-transmission.

"Nkosi's story went a long way towards convincing the public about the possibility of doing something to reduce the transmission of HIV to children," says Mmite Modise, a physician and director for public health in Gauteng province, where a mother-child transmission program was introduced last month.

(c) Copyright 2001. The Christian Science Monitor