Nontsikelelo Zwedala, gentle, with a will of steel – unsung hero of the struggle for HIV medicines

Nontsikelelo Zwedala, an activist at the forefront of the Treatment Action Campaign (TAC) protests in the early 2000s, died this month at the age of 52. We asked Zackie Achmat, TAC leader at the time that Nontsikelelo was active in the organisation, to write an obituary for her.

Our soft Ntsiki, with a will of steel, is no more.

I started writing these words last year as a historical tribute to Nontsikelelo Zwedala and Christopher Moraka as part of a paper on TAC’s campaign for the antifungal medicine fluconazole. Nontsikelelo was still alive.

We launched our campaign on 17 October 2000 and named it the Christopher Moraka Defiance Campaign Against Patent Abuse, in which TAC imported fluconazole from Thailand in defiance of patent laws.

Nontsikelo could have died before Christopher, her partner, because she also became desperately ill. He died, yet she lived, because she was treated and he was not. Christopher died because Pfizer’s price for fluconazole, a life-saving medicine, was unaffordable for the state and most private citizens. Christopher could also have lived with antiretroviral medicines (ARVs). However, he could not exercise his right to health and, consequently, his right to life. He died a few months before the campaign was launched.

The story of TAC’s decision to defy patent law has many strands but none so moving as the relationship between Christopher and Nontsikelelo. Their influence in sparking our movement cannot be understated.

In his death, Christopher became a global symbol for a revolt against Pfizer and other drug companies, while Nontsikelelo became an unsung warrior in the struggle against drug companies. She helped win against Pfizer. Then she was there in TAC’s challenge to 39 drug companies who took the South African government to court. She was also in every battle against the denialism of the South African government.

In September 2002, Nontsikelelo explained her struggle for life, as HIV-related illnesses wracked her body, in an affidavit. She was the second complainant to the Competition Commission against drug company giants GlaxoSmithKline and Boehringer Ingelheim, demanding access to generic ARVs. Hazel Tau, another TAC leader also living with HIV, was the first complainant.

In March 1998, Nontsikelelo was diagnosed with HIV and told by the doctor:

“I should wait for my death.”

At that time, Nontsikelelo had TB and a fungal infection on her hands and feet. She explained how the fungal infection caused her pain:

“… if I put water on it then blood used to come out from the cracks on my hands and feet.”

After treatment with fluconazole, her health improved. Then government stopped providing Pfizer’s fluconazole because of the cost.

In 2000, Nontisikelelo’s TB and fungal infections returned. Her CD4 count, which indicates the strength of the immune system, was 14. The CD4 count of a healthy adult is between 800 and 1200. She lost 30kg. The clinic treated her TB but could not treat her fungal infections which required fluconazole made by Pfizer. She could not afford it. Eight months later, Nontsikelelo’s HIV viral load measured millions per drop of blood.