The activist who fought for her life, and won
Once given a death sentence, she joined a push for access to HIV drugs in South Africa
When Vuyiseka Dubula was casually diagnosed with HIV, it was a death sentence.
She was poor, black, just 22, the sole breadwinner for an injured mother and eight younger siblings living in a ragged South African township near Cape Town. Antiretroviral drugs that had long been offered to Canadians were prohibitively expensive in South Africa. “There is no treatment,” the counsellor told her that day.
Her ears roaring, she stumbled home and got into bed. “I went to sleep and I kept on sleeping,” says Dubula. “After one month, I started the grieving process.”
That was 14 years ago, and here she is in a living room in Toronto’s Chinatown, skin glowing and eyes narrowing as she recounts her war stories. She has a partner and two children, all three HIV-negative. In June, she will finish her PhD. She is training for another ultra-marathon.
Dubula fought for her life, and she won.
After two months in bed, she figured death was late in coming. So she returned to her job at a McDonald’s drive-thru and she dropped by a clinic run by Médecins Sans Frontières, where doctors were beginning a trial with antiretrovirals to treat a number of poor South Africans who were HIV-positive.
Dubula was not one of those who received the treatment. But a counsellor gave her something else: hope. She told her about the Treatment Action Campaign.
“That day changed my life, too,” Dubula says. “From that day on, I dedicated my life to this.”
The Treatment Action Campaign (TAC) was built by HIV-positive activists in South Africa, fighting for the right to treatment through protest, litigation and public education. It continues to be the “pre-eminent organization fighting HIV on the continent,” says Stephen Lewis, the former United Nations special envoy for HIV/AIDS in Africa. He compares TAC organizers to American civil rights activists in the 1960s, with one notable difference: Organizers “had the extra dimension of life and death, every single minute.”
In a single year, some 200 TAC organizers died, says Dubula.
Four months after she began volunteering with TAC, she opened an office in her home. There, she offered lessons to fellow HIV sufferers on the disease — how it spread, its common side-effects and how it could be treated. She instructed other poor, ill people to challenge their doctors.
“We put pressure on the front-line workers, so they put pressure on officials at the top level,” says Dubula, 36. “We were democratizing the power of knowledge.”
At the time, president Thabo Mbeki was publicly denying the link between HIV and AIDS. His health minister denounced antiretroviral drugs as toxic and extolled the benefits of multivitamins. In response, TAC lawyers took the government to court for failing to protect babies
“I reclaimed me from HIV. I grabbed what little bit was left by the tail.” VUYISEKA DUBULA
from becoming infected, and won.
They also challenged pharmaceutical companies for selling life-saving drugs at prohibitive costs. Dubula remembers picketing outside the headquarters of GlaxoSmithKline, when she and other organizers were asked inside. “It looked very posh,” says Dubula. “But we said to each other, ‘This was made glossy with our blood.’ We were very fired up.”
TAC used both litigation and shaming to push drug companies to change their policies. Two members flew to Thailand, where the generic drug to treat systemic thrush was 15 times cheaper than in South Africa, and brought 6,000 tablets back to publicly distribute to public clinics. Soon after, the pharmaceutical companies donated the drug to the government.
In 2004, Dubula began her own treatment. To mark her rebirth, she cut off all her hair and then she enrolled in university — the first woman in her family. “I reclaimed me from HIV,” she says. “I grabbed what little bit was left by the tail.”
Two years later, she delivered a healthy daughter, now 8. Today, she also has a healthy 2-year-old son.
The ultra-marathons started after she was promoted to secretary general of TAC. “It’s a way to prove to myself, I can do anything I put my mind to,” she says.
Dubula was brought to Canada by the Stephen Lewis Foundation to deliver speeches for World AIDS Day. Her message: although South Africa’s universal government treatment program is now the largest in the world, the fight against HIV is far from over. Up to three million South Africans still aren’t being treated. Many have developed resistance to the first-line antiretroviral drugs, and the second and third lines are expensive.
Then there is the larger issue of gender. HIV has always been a symptom of women’s inequality in South Africa, Dubula says. Girls aged 15 to 24 are up to eight times more likely to become infected with HIV than young men the same age. “We cannot treat ourselves out of the epidemic. We need behavioural change and gender equality. It’s the politics of the uncomfortable,” she says.
In the meantime, donors have pulled out of South Africa, and TAC — with182 branches and 8,000 members — is facing a funding crisis. Unless it raises $2 million by March, it will close, says Dubula, who is now a board member.
She has another fight against death before her.