In July, 2004, Winstone Zulu sat on a stage next to Nelson Mandela. At the International AIDS Conference in Bangkok, Winstone and Mandela spoke to delegates about the urgent need for new research into tuberculosis, a disease both of them had survived. When Mandela had the floor, he turned to Winstone beside him and thanked him for his tireless activism, fighting for affordable treatment for HIV-AIDS and TB. After the session, as the South African leader was leaving the hall, Winstone leaned against the wall beside me, glowing from the up-close encounter with an icon.
“I want to live that long,” he said, half to me, half a pledge to himself. “Long enough to have so many lines on my face.”
Winstone had so much to do – and did so much – that many of us who loved and revered him forgot for long stretches that he had pulled himself back from the edge of death over and over again.
We could all imagine him 50 years from now: old and wrinkled and still teasing us gently in his deep, honeyed voice.
Winstone died of AIDS in a hospital in Lusaka, Zambia on Thursday. He had lived with the virus for two decades.
His death has devastated the international community of AIDS activists. Winstone was a one-man force who played a key role in reshaping the global response to HIV-AIDS and TB. He personally lobbied every G8 leader; he spoke to mass rallies on five continents; he inspired audiences at schools and in churches and in parliaments in dozens of countries, including Canada, where he was a frequent visitor, working with the advocacy organization RESULTS.
Winstone was born in Zambia in 1964. At the age of three, he survived an attack of polio, but was left reliant on bulky crutches or a wheelchair. In 1991 he won a scholarship to study politics in the Soviet Union; he learned from his visa application medical exam that he had HIV. The virus was already wreaking havoc in Africa by then, but not a single person in the southern part of the continent had dared say openly that he or she had it.
In the next few months, two of his brothers and a sister-in-law all died of TB; they refused to test for HIV, which underlay their TB infections. Winstone was first alarmed and then enraged by the denial of AIDS he saw around him. “I had this anger that this disease was killing so many people and no one was speaking or even showing the face of this disease. I decided, ‘Look, this thing is going to kill me but I might as well use it to help people.’ ”
So he went on Good Morning, Zambia, the most-watched television program on the national broadcaster, and told the country he had HIV. And then he began visiting schools and factories and military bases, telling people the virus was real and he had it and a person could be infected even without that skeletal appearance. He was often shunned, but the work was nevertheless liberating, he told me. “I was feeling as if a burden was removed, the sense of worthlessness.”
As one of the first Africans to live publicly with HIV, Winstone was given a rare opportunity to have a voice in the global response to the pandemic that began to gear up in the 1990s. In 1994, he helped draft the Paris Declaration, which enshrined the idea of legal protection from discrimination for people with HIV. He was part of the 1996 meeting in Como, Italy at which UNAIDS was founded.
And he helped to organize what was perhaps the most seminal AIDS gathering of the past 25 years: the 1996 conference in Vancouver where David Ho announced that he had successfully suppressed HIV using a cocktail of antiretroviral (ARV) drugs.
Winstone was in the audience when Ho presented, and as he puzzled through the technical language, he felt the first rush of hope since his diagnosis. Except, of course, that no one in Zambia had the cocktail. The next year, Winstone came down with TB. He was treated, and recovered, but he knew he needed the new drugs. “I thought, ‘If I’m 33 and I have TB there must be something terribly wrong with my immunity.’ ” He enlisted the help of friends in AIDS organizations abroad, who sent him leftover pills donated by patients in the developed world, and began a patchwork ARV therapy. Soon he felt fine, and he redoubled his activism.