Private disease suffered before the whole world

Nkosi Johnson, the 12-yearold black boy who gave a human face to millions of people suffering from AIDS throughout the world …

Nkosi Johnson, the 12-yearold black boy who gave a human face to millions of people suffering from AIDS throughout the world but particularly in Africa, died in his sleep shortly before dawn yesterday.

News of his death spread rapidly and brought messages of condolences from all over South Africa and beyond its borders to his foster mother, Ms Gail Johnson, in her home in Melville, Johannesburg.

Two themes ran through nearly all reactions to his death: sadness that his struggle had come to an end and admiration of his courage in speaking out for humane treatment of all those afflicted by the disease.

Of all the messages which reverberated around South Africa the one which summed up the feelings of most people best came from a Johannesburg paediatrician who knew Nkosi, whom he described as a boy who had suffered a private disease before the whole world with dignity.

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Nkosi acquired a world profile a little under a year ago when he spoke at the international conference on AIDS in Durban. His voice was high-pitched, even squeaky. But the audience, which included eminent scientists, cynical politicians and tough AIDS-activists, listened with rapt attention.

His compelling plea was for people not to shun AIDS sufferers, not to deny them the warmth of human sympathy, expressed physically as well as psychologically. "We are normal human beings," he told conference delegates. "We can walk and talk. You can't get AIDS by hugging, kissing and holding hands."

But he had another equally important message: a plea to the South African government to make anti-retroviral drugs available to HIV positive pregnant women to prevent the transmission of AIDS to their unborn children, a step which President Thabo Mbeki's administration was reluctant to take (out of fear that premature and wholesale use of "untested" drugs might compound rather than diminish the problem).

Nkosi's plea had a personal dimension. He was born with AIDS, having contracted it from his biological mother, Ms Daphane Nkosi, who was too weak to care for him properly when he was two years old.

Former President Nelson Mandela, who visited Nkosi shortly before his death, paid tribute to the young boy as an "icon of the struggle against AIDS".

He paid tribute, too, to Ms Johnson, describing her as "a wonderful woman".

Ms Johnson, a white woman, had her own cross to bear during the last few days of Nkosi's life. Her son's suffering aside, she was deeply hurt by the accusation of a Johannesburg reflexologist, Ms Hilda Khoza, who declared Nkosi was not really ill but being abused by his mother for financial gain.

The accusation was given prominent coverage on Thursday by the Sowetan, a daily newspaper with a predominantly black readership. Ms Khoza pronounced that Nkosi was merely suffering from constipation but had become "a bank to Gail".

She also laid an accusation of maltreatment against Ms Johnson with the Human Rights Commission.

The commission, however, dismissed her complaint and called on her to retract it.

Ms Johnson was highly critical of the Sowetan for publishing the accusations. "I would like to think that the accusations are not racial in any way," she added.

On the day before he died, the physician who treated Nkosi in hospital before he returned home to die, Dr Ashraf Coovadia, said: "Nkosi is suffering from AIDS encephalopathy or dementia, a condition usually present in the final stages of AIDS".

Paul Cullen adds: UNICEF Ireland has responded to Nkosi Johnson's death by demanding that his death should not be in vain.

Unless more was done to prevent the scandal of children needlessly being infected with the AIDS virus, millions more innocent children will die, the organisation warned.

While Mother to Child Transmission (MTCT) is the overwhelming source of HIV infection in children, it is also the most solvable aspect of the AIDS pandemic, according to UNICEF's director Ms Maura Quinn.

A combined programme of testing, counselling and treatment, using a drug costing just $4 per mother and child, can drastically reduce the risk of a baby being born with the virus.

"UNICEF Ireland will continue to campaign for the vital resources needed to expand the programme of MTCT prevention. We have an opportunity now to prevent children being born with a death sentence. We need to ensure that Nkosi's death hasn't been in vain," Ms Quinn said.

"Slow Time Coming". Seamus Martin revisits South Africa after seven years and finds it overwhelmed by the AIDS crisis: The Irish Times Magazine today.