Vuyiseka Dubula received what she thought was a death sentence 14 years ago, when she was 22 years old.
"I was not sick when I went in for my HIV test, I was just curious to know," she said.
"Then I was told I had HIV.… I accepted it. I went home and went to wait for my death because there was no treatment."
Dubula spent two months resigned to death because her government would not pay for life-saving drugs and she could not afford to pay for antiretroviral therapy on her own.
If she had been diagnosed with cancer or tuberculosis, the South African government would have paid for treatment, but because she had HIV, Dubula was on her own.
"I was depressed for about two months until I saw that I wasn't dying," she said. "Then I decided, okay, maybe I go out there and look for help, even if it's not going to help me … at least to find out what can I do."
She began to mobilize others in South Africa, calling on the government to pay for HIV drugs and for drug companies to lower their prices. She started by recruiting her mother and two sisters, and the movement grew from there, she said.
"Our government at the time … refused to acknowledge HIV causes AIDS. There was a point where even our president [Thabo Mbeki] denied ever meeting a person living with HIV," she said.
"Even people that were nurses and judges and doctors could not afford medicines, because they were so expensive. They were costing between $150 to $10,000 U.S. per month."
Government mismanagement and denial led millions of people to go untreated for HIV, she said. About 6.8 million people in South Africa had HIV in 2014, according to the United Nations. Approximately 18.9 per cent of adults age 15 to 49 are infected.
HIV program now largest in world
The campaign Dubula helped lead began to see results about 11 years ago. Dubula herself began taking life-saving drugs. Since then, South Africa has distinguished itself as a leader in access to antiretroviral therapy on the continent and has the largest HIV program in the world.
As a result, AIDS-related deaths have declined by 58 per cent in South Africa in the last five years, UNAIDS says.
"I consider myself lucky that I was able to be alive for such a long time until we fought for government to change its public policy," said Dubula.
The drugs she takes now cost the government less than $10 per month, she added.
"My health is super," she said. "My only complaint is that I worry about my daughter, whether [she] will live in a society in South Africa where HIV and violence is not a norm."
Vuyiseka Dubula is one of the speakers in Winnipeg at the Stephen Lewis Foundation's "Ask Her Talks," 7 p.m. at the Metropolitan Entertainment Centre (The Met), 281 Donald St.