Zambian was key to reshaping the global response to HIV

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.

Then came an episode that startled and wounded many of the activists he had inspired. He allowed himself to be seduced by the message of the so-called AIDS dissidents, a group of prominent scientists (including a Nobel Prize winner) and their most famous political patron, then-South African president Thabo Mbeki. Winstone read up on their theories that HIV did not cause AIDS and that ARVs were toxic; he joined Mbeki’s AIDS advisory panel and stopped taking the drugs in 2000.

“For 10 years I’ve lived with HIV,” Winstone told reporters at the time, “and for 10 years I’ve preached the main line. To hear that I could be wrong is good news. If you were in my shoes, you could understand.” But less than two years later, he was terribly sick again, and other prominent dissidents were dead. “What saved me was that I didn’t feel too ashamed to go back and ask for real advice.” He went back on the ARVs, and once again, the drugs worked. Within a month, he was out of the wheelchair and back to activism.

He often encountered a sort of willful ignorance when he spoke in Europe or North America, he said. “Many people just want to look away because the problem looks so insurmountable. They think, how can we deal with this? But if you say, ‘Hey, wait: the biggest killer of people living with HIV in Africa and many other developing regions is tuberculosis, and if you give them drugs that cost $10, you can save someone’s life, and you can avoid having more orphans’ – then people see it differently.”

He used that message equally effectively with global leaders, who could be both mesmerized by his eloquence and uncomfortably startled by his willingness to speak bluntly about the cost of their inaction. Zambia’s President Michael Sata called Winstone “a gallant fighter for the rights and dignity of people living with AIDS” and said that his activism played a key in making it possible for his government to now have 400,000 Zambians on ARVs.

The quiet bedrock for Winstone’s activism was his wife, Vivian, who had sought him out after that first TV appearance; her own strength and courage left him in awe. They adopted a nephew, Michael, and then, after the interventions to keep an HIV-positive woman from passing the virus to her baby came to Zambia, they had three more children. The first they named “Mtunduwazanso”, which means “the clan has come back again,” in honour of the six of Winstone’s siblings who died of HIV and TB co-infection.

Winstone loved music. He loved to tease. He hated stairs, but he made so little fuss about his disability that it was easy to forget he had any issue at all with mobility. He had a wicked wit. He had long regretted that he hadn’t had the chance to go abroad for further studies after the HIV diagnosis scuttled his plans. In 2008 he spent the academic year as a visiting scholar with the School of Journalism at Ryerson University in Toronto, a title that tickled him.

In recent years, Winstone worked as an adviser on HIV and disability with AIDS-Free World, a lobby organization co-founded by Stephen Lewis, the former UN Special Envoy on AIDS in Africa. Two years ago I was briefly in Toronto and Lewis sent me word that some African activists were gathered at his foundation office, including Winstone. When I arrived, Winstone showed me a small sheaf of papers: pictures of himself taken six months earlier, when his AIDS-related infections had flared up and he had come within hours of death. In the pictures, he was ashen and 15 kilograms thinner, but the most frightening part was the hopeless look in his eyes. Lewis had helped rally some of Canada’s leading AIDS physicians – and some funds – to get Winstone treatment. As I watched, he walked over to Mr. Lewis and handed him the pictures. The last photo had been taken a few days earlier; Winstone, hale, with the familiar glint of intelligence back. “I wanted to show you these,” he said. “I owe you my life.” Lewis held the pictures, then held Winstone, and simply wept. (I did, too.)

Winstone chuckled at both of us, gave his wry little half-grin, and swung his crutches toward the door; he had things to do.

Winstone Zulu is survived by his mother; his wife Vivian; their four-children; and a huge community of orphans and people living with HIV to whom he was a surrogate father. He will be buried Saturday in Lusaka. A memorial fund to support his family and continue his work has been established by Action.Org.

Africa:HIV/AIDS: THE STATISTICS

Stephanie Nolen was the Globe correspondent in Africa from 2003-2008. Winstone Zulu told her his story for her book 28 Stories of AIDS in Africa.