Monday
27th September 2004

Winstone Zulu

Winstone Zulu to visit UK (1 - 14 November 2004)

Winstone was the first Zambian to go public about being HIV+. Having lost all of his brothers to TB due to a lack of access to drugs, Winstone became a TB activist after he recovered from the disease. Winstone is a great spokesperson for AIDS and TB and he wants to support our work here in the UK.  Whilst in the UK Winstone will be speaking at a number of events including a House of Commons briefing on the 3 November at 3.00pm (Briefing room still to be confirmed).  Also on his itinerary are RESULTS fundraising events in London (4 November), Linlithgow and Leamington Spa (12 November), as well as the RESULTS National Conference. Other events are still being firmed up.

Contact Sheila at: Sheila@results-uk.org for further information or if you can arrange for a press interview.  For biographical information on Winstone please use the following link:  Winstone Zulu Bio

Where misconceptions and superstitions are common, Winstone Zulu, one of the first Zambians to go public with a HIV-TB co-infection, discovered the hard way the importance of the right information. Particularly when it comes to HIV and TB.

It was rather unusual that Winstone learned his HIV status at all. In 1990, a scholarship he received to study political science in the Soviet Union required it. At that time, HIV-testing in Africa was rare, and AIDS counseling practically nonexistent. When he tested positive, Winstone lost his scholarship and hope. Stuck at home, he turned despair into his first activism campaign: trying to convince his brothers, who played in a popular reggae band, to get tested.

Two months later, one of his brothers died of TB. Winstone, just beginning to educate himself about HIV, started discovering the powerful links between TB and HIV. In the early 1990s, Zambia was just beginning to show signs of the emerging twin-epidemics at work, where HIV+ individuals are 30 to 50 times more likely to turn the latent form of TB into an active, transmissible case.

"People had no real information about either TB or HIV,“ Winstone remembers. “Many believed that TB drugs could cure STDs (sexually transmitted diseases), like AIDS. One of the guys in the band with TB sold his TB drugs, so he could buy food. Some people associate diseases with witchcraft. And my father still believes the people in the band killed his children so they could run off with all the equipment."

Since then two more of his brothers have died, also from TB with a pre-existing HIV + status. His eldest brother, a truck driver for British Petroleum, had four wives when he died. Three of the four wives have also since died of TB. Winstone’s family story is a mirror image of Zambia’s health statistics, where two-thirds of TB patients are HIV+, and life expectancy has dropped to 42 because of the deadly interaction of the two diseases.



With the stakes raised, Winstone started taking anti-retrovirals, which he was lucky enough to get from friends abroad and foreign doctors at home. He also started talking to his remaining siblings, particularly his sisters. He tried to persuade them to use condoms, to get tested. All got married, but only one was tested. Winstone was devastated when his sister Rebecca — who married her first boyfriend — died from HIV.

After watching so many loved ones suffer without information, without a voice, Winstone knew that he had to turn his diseases into something useful.

"I try to turn tragedies into opportunities. Not necessarily to help myself, but to help others. So I went flat out. I went on television. You don't see people in Zambia who are open about their HIV status - not one doctor, or teacher, nobody goes public. This stigma is reinforced by silence. The only way to fight this stigma is to come out."

Winstone spent close to a decade campaigning against AIDS and working with patients in TB clinics, because TB had become the leading killer of AIDS patients. In 1997, Winstone himself contracted TB. Since he had seen so many family members and friends succumb to the disease, Winstone was determined to stick to the full course of TB drugs, taking them for over 8 months. He also stuck to his anti–retroviral regimen.

But, in February 2000, he succumbed to the doubts around HIV raised by his longtime hero, South Africa's President Thabo Mbeki. "I was completely sold by these materials sent by all the dissidents. They were very loud, and I was also dreaming that someone, somehow would just find a cure for HIV."

He ceased his activism and his anti-retrovirals, a life-long therapy which boosts the immune system to stave off infections like TB, but not a cure.

The consequences were dire.

After eight months, Winstone started getting fungal infections, his nails fell off, and abscesses developed everywhere. Ultimately he couldn't walk - and he ended up in a wheelchair.

Winstone has since restarted his medications, started a family of his own and expanded his awareness campaigns, now promoting new research for better TB drugs. At the Montreal IUATLD conference, where we spoke to him, Winstone participated in the Treatment Action Group workshop to improve co-infection treatment. He pointed to the importance of patient pressure.

“At the beginning, it is purely a medical thing. Now we see the connection between poverty and TB. There is politics involved here, and you can’t just cure that in laboratory. You need community involvement and social mobilization. It’s time for TB patients to push for action on the research side. We need to say, ‘Look, we are here, and we need new drugs and treatment.’ This is missing in TB at the moment.”

The more voices that join Winstone Zulu’s, the greater the movement for new TB drugs that will back the TB Alliance in its search for a faster TB cure.