Winstone Zulu’s contribution to HIV and TB activism

As noted elsewhere on aidsmap, Winstone Zulu, the first Zambian to come out publicly about his HIV-positive status (in 1990) who later went on to become one of the very first TB-HIV activists, has passed away.  We thought there was some more to add about the contribution that he made to activism, in both his own and his colleagues words.

“I knew Winstone Zulu very well. I worked with him for a long time,” said Kunyima Banda of the Network of the Zambian People living with HIV/AIDS (NZP+, see about some of the Network’s work elsewhere on this blog). “Winstone started treatment in the late 1990s before treatment was available in Zambia — he got his treatment at the time from friends in Europe.”

There is a bit more to this story though, as a press release from the Treatment Action Campaign has pointed out: Winstone for a short while, became an HIV denialist, influenced by South Africa’s former President Thabo Mbeki, who he saw as a hero of the liberation. He stopped taking his medications in 2000, and joined Mbeki’s AIDS Advisory panel, and questioned the use of antiretrovirals. Over a two-year period, his CD4 count dropped from 500 to 36, and he became very ill — until he publicly repudiated HIV denialism at the ‘Treat the People’ TAC/COSATU National HIV/AIDS Congress in 2002. TAC cites his turnaround as being crucial to the fight for ART in South Africa:

“Winstone had a big role in destroying the edifice of deadly nonsense that Thabo Mbeki stood for. When we look back upon the struggle for treatment in South Africa which culminated in the rollout of ARVs in 2004, Winstone's speech at the TAC/COSATU Congress was a seminal moment.”

TAC stresses that going back onto ART probably added ten years to Winstone’s life, unlike some of his other HIV-positive colleagues on the AIDS Advisory Panel. “Some of the people I was with, they just died in denial,” he later said during an interview. But there is a chance that discontinuing treatment as he did contributed to his becoming resistant to his ARVs — though this may have started earlier:

“I think he had brewing resistance from having started monotherapy back in the day,” said Dr Krista Dong of Edendale Hospital, and iTeach who collaborated with Winstone on some projects. “I know he was resistant and had a low CD4 and high viral load when he last visited me. He was unable to go on a full hospital tour because he could not risk being exposed to TB.”

Winstone had good reason to fear TB —when he first fell seriously ill, in 1996, it was with TB: “In all my years with HIV, TB is what has come closest to killing me”, he said when the Union World Lung Health Conference was held in Cape Town in 2008.  

This was not his first public statement about his own experience of TB. Four years earlier, he had shared the podium when Nelson Mandela announced, “We can’t fight AIDS unless we do much more to fight TB as well,” at the World AIDS Conference in Bangkok.

“I am alive today because I took TB drugs when many people couldn’t afford to get them. I have seen so many friends, and have lost my own four brothers, who have died from tuberculosis simply because they did not get the drugs to have themselves treated,” Winstone said at the time.[1]

Winstone spoke poignantly about how TB was neglected as a public health priority because it is a disease of the poor.

“Very few people of influence now, or power, get to die of TB. So it’s very poor people who are in their hearts dying very slowly, there’s nothing dramatic… with TB people die very quietly. So when I meet world leaders, I say, ‘Well, look. You may be alarmed when you hear that 3,000 people have died somewhere, or 5,000 people. But TB, in a year, about two million people die,’” he said in an interview at the 37th Union World Conference on Lung Health.[2]

He often stressed that no matter how much he talked about it, people didn’t seem to get how important tackling treatable TB would be to the survival of people with HIV.

“People don’t get it, once I speak about TB and having HIV, people will be like how did you get it [HIV]?’ No one will ask me about when I had TB, what did it feel like?” he said in Cape Town. The previous year, he said he felt much more profoundly stigmatised while he had TB.

“When I was told I’m HIV-positive, I told everybody I had it. I said it in the media, ‘it’s all on.’ I faced very little stigma… But when I had TB, it showed. That’s when I really experienced stigma,” he said, which he stressed was especially bad because it amounted to being “ignored. And that’s exactly the kind of stigma that I got when I had tuberculosis — where people just stopped coming to visit, because they thought I was dying… When you don’t have that mark, it’s difficult for people to stigmatise you. So, in some way, TB’s more stigmatizing than HIV when you don’t have the symptoms,” he said.

We believe Winstone’s voice should continue to be heard, so we would like to post links of his interviews, and writing here (please send in any other materials you may have in the comments):

An interview Human Rights Watch did with Winstone Zulu & Myroslava Tataryn: http://www.hrw.org/audio/2011/06/03/sex-hiv-and-disability

One of his blogs: http://winstonezulu.com/?page_id=2

Some videos:

youtu.be/ntU-Z_N46dg

youtu.be/MnvdYfgb2DA

youtu.be/af7I8l9hD74

Advocacy to Control TB Internationally (ACTION) has set up a tribute page to Winstone, where people can share memories of Winstone and his work. They have also set up a memorial fund for Winstone's family:

http://www.action.org/site/blog_detail/tribute_to_winstone

Winstone’s death is also a reminder that we have to look out for such irreplaceable human resources in this field. We have been unable to find out exactly what Winstone’s cause of death was — but we hope that if he was resistant to the antiretrovirals currently available in Zambia, that every effort was made to get access to effective salvage regimens, which are effective for many people living with HIV elsewhere in the world. 

“I loved him, loved working with him,” said Dr Dong. “I loved how he went from dissident to activist. Loved his service heart. Loved the risks he was willing to take to follow what he believed. Loved that he left his grad program in Canada because he missed doing 'real work'. Loved that he was building houses in his old community - houses that would decrease spread of TB within the household. Loved that he wanted an old truck or vehicle to decrease the cost of picking up bricks and mortar in order to lower the cost of each unit (house). Loved that if you didn't know, you would never guess that he was disabled and walked with crutches. Hated that he became resistant to his drugs. Hated that he of all people should have died. Hate that his death might have been prevented.”

Effort to raise funds about the human toll of TB/HIV in the Mines

As Winstone pointed out, many other people with TB/HIV die silently. A documentary film that tries to address this tragedy, by introducing audiences to the families and lives of people who have been jeopardised by the TB/HIV epidemic in the mines of Southern Africa is currently trying to raise funds for its production:

http://www.kickstarter.com/projects/theygotodie/they-go-to-die-a-tb-hiv-and-human-rights-film?ref=card%27

This project will only be funded if at least $13,000 is pledged by Monday Oct 24, 2:16pm EDT, and $1500 is still needed.

We believe this could be an important tool for TB/HIV advocacy. Please check the site out.

References

[1] HDN Key Correspondents Team. IAC 2004: Mandela: fight AIDS by fighting TB. 2004: http://eforums.healthdev.org/read/messages?id=1875

[2] Balderas JB. 37th Union World Conference on Lung Health: Newsmaker Interviews: Winstone Zulu. kaisernetwork.org, 2006.

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