Editor’s note: Now president of the South African Medical Research Council and a principal investigator for the Fred Hutch-based global HIV Vaccine Trials Network, Dr. Glenda Gray spent much of her career as a pediatrician at an enormous hospital in the township of Soweto. As a clinician, researcher and activist, she successfully fought to prevent mother-to-child HIV transmission. Here she recalls the days before prevention or treatment was available, and she remembers one child in particular who received international acclaim after addressing the 2000 AIDS conference in Durban, South Africa. Gray gave this talk to a gathering of colleagues from that time attending the 2016 AIDS conference, held again in Durban.
Nkosi Johnson died a year after the 2000 Durban AIDS Conference, and his premature death was probably one of the only AIDS deaths in a child that got noticed.
At that time, he was one of the 70,000 children getting infected each year through mother-to-child transmission in South Africa. His life was and is a tribute to all HIV-infected children who battle this disease in secret and with shame.
At the time of Nkosi’s death at age 12, Nelson Mandela referred to him as an “icon of the struggle for life.” That so aptly describes the role that Nkosi played, and it symbolizes his urgency to live at a time when antiretroviral drugs were not yet available in Africa.
That year in South Africa, I was working at the Chris Hani Baragwanath Hospital, and we as doctors and nurses were overwhelmed by the sheer burden of HIV in children. Our hospital, like every other hospital in South Africa, was exploding from the numbers of infants and children coming in: chubby, little 3-month-olds on the backs of their mothers, with pneumocystis pneumonia, the beginning of their fatal battle with the infection. Older tots, emaciated, frail, with severe thrush, unable to eat, with tuberculosis, who, instead of playing, growing, toddling around, were battling a disease with only one certain outcome at that time.
Sometimes the nurses would say to me, “Let’s not tell the mother this time. Can we wait until she comes back, when the baby is sick again?”
So Nkosi’s public life and his public death became a tribute to all those other children who, like him, had battled bravely, to those children who had succumbed, sometimes without a diagnosis, some in hospitals or at a clinic but most at home, where their status was secret and their lives smeared with stigma.
Nkosi had faced that same stigma when, at the age of 2, his mother placed him in a care center for HIV/AIDS. He said in his speech at the Durban 2000 conference, “My mommy was obviously also infected and could not afford to keep me, because she was very scared that the community she lived in would find out that we were both infected and chase us away.”
Nkosi, a child, was the public figure of this stigma and discrimination. First he was given away because of the fear of reprisal should it become public that he and his mother were HIV-infected. Then he was denied entry into a school in the white suburbs of Johannesburg. His foster mother, Gail Johnson, who was white, created a furor when this happened, highlighting and publicizing how bigoted schools could be.
Many parents then, and probably still today, enrolled their children into schools silently and hoped that the stigma of the disease did not "out" them.
One of the children I was treating at the time was always sickly, frail. Her parents battled the disease in secret, terrified of the school finding out. While she was at school, her brother, then her mother, died. She told only one friend, when she was 13, that she was HIV-infected. The friend was sworn to secrecy.
So by articulating the impact that discrimination had on children who were HIV-infected, Gail Johnson became the voice and the hope for mothers who could not let their status be known or that of their children.
An unspoken tragedy
Like my patient, little Nkosi also had to face the death of his biological mom in his first year at school. This was the jeopardy of HIV at the time: you battled this disease as your mother and father battled it, your siblings too. What tragedy for a family and always shrouded in secrecy, unspoken. I often wondered how this played out in the home — the despair, the anger, the unfairness of it all.
Nkosi, public with his status, was a hero. With a government so defiant in its stance on AIDS, unmoved by the plight of children who were battling in every community with this disease, Nkosi, the public figure, could share what it was like to be infected, to live with HIV, and what it was like to be at his mother’s funeral and how much he missed her.
He hated having AIDS because he got very sick, but he also had tremendous compassion, as articulated in his speech in Durban when he said, “I get very sad when I think of all the other children and babies that are sick with AIDS.”
Then-President Thabo Mbeki left part-way through Nkosi’s speech at the 2000 conference, unmoved by his pleas to the government to give AZT to pregnant women. At that time, Mbeki was publically questioning the link between HIV and AIDS, and despite graveyards filling up, he and his dissident friends, both within South Africa and abroad, continued to propagate AIDS denialism while being propped up by many South African government officials, including then Minster of Health Manto Tshabalala.
It was hard to be a doctor working in HIV at that time. We were under continuous threat of being closed down, and even in the health care setting, hospital officials and CEOs continued to obstruct access to PEP [post-exposure prophylaxis] in the case of rape or to the limited supply of AZT or nevirapine we had received as donations for HIV-positive pregnant women.
Medicine, but too late
Gail Johnson once brought Nkosi to be evaluated by me, as a pediatrician. It was hopeless, and without drugs, his death was inevitable. Poor Nkosi only was able to get ARVs [life-saving antiretroviral drugs] three months before he died, too late to make any difference.
Nkosi wanted to live. He did not want to be sick. Nkosi was like all kids with HIV: they all wanted to live, they all had suffered so much, and he embodied that will to live for all children. Thank goodness things are different now, and 16 years later, we can reflect on the injustice of the preceding years and begin to see the tide turn as we get more and more children onto treatment.
In his obituary in The Guardian, Belinda Beresford wrote: “Nkosi Johnson’s large bony head, frail skeletal body, and thin voice have become as much as an emblem of suffering, activism and revolution in the era of AIDS in South Africa as the dead body of Hector Petersen, being carried after the massacres in Soweto in 1976, at the time of apartheid.”
Nkosi Johnson and his struggle to live should not be forgotten. He should not have died. He represents all the children who should not have died from HIV. He is the symbol of all those children who were never beneficiaries of prevention of mother-to-child transmission, or who die because they get access to drugs too late, or who are stigmatized and their journey with HIV happens in secret for fear of being rejected by society.
We have come a long way in realizing the right to live, but our journey to unpack the stigma of being a family with HIV has not even begun.
As much as we continue to roll out ARVs in South Africa, we need to roll out anti-stigma, we need to vaccinate against stigma, and we need to give dignity back to people as much as we give treatment.
This is what Nkosi’s life means for me: Restoring dignity to the lives of our children both as it pertains to the right to treatment and the right to enjoy being a child.
