How to Spread it: Defenders under threat

2014-10-12 15:00

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The Treatment Action Campaign has become an advocate for patients who are mistreated by the health system and have no one to fight for them, yet this iconic organisation is struggling to survive as donor funds move elsewhere. Kerry Cullinan and Laura Lopez Gonzalez profile two of its members who are often the first – and last – line of defence for patients

From Duduza on Gauteng’s East Rand to Khayelitsha in the Western Cape, poor health services have forced the organisation that is famous for its fight for free antiretroviral (ARV) medicine to transform into a social movement.

“When people are denied services, that is where TAC steps in,” says Fikile Mtsweni, a Treatment Action Campaign (TAC) community mobiliser in Duduza.

“TAC is the eyes and ears of the community. That is why you find us intervening on service-delivery issues, at the police station and in court.”

About 60 community members have crammed into a converted shipping container to consult with Mtsweni. They range from youngsters with questions about contraception to lesbians wanting to know how to change health workers’ discriminatory attitudes and mothers whose daughters had been raped.

In Khayelitsha, the TAC office is similarly busy. In the waiting room, there is a mother whose mentally disabled daughter was allegedly beaten while in hospital.

An 88-year-old man waits in a car outside. He was discharged from hospital with the needle of the drip still in his arm and his outraged son wants TAC to accompany him to the hospital to complain.

Others have come in from the nearby Khayelitsha Day Hospital for tea and bread “because you can’t take ARVs or TB treatment on an empty stomach”, according to TAC Western Cape organiser Lumkile Sizila.

While TAC started as an advocacy organisation for HIV treatment, it is now “a human rights organisation”, says Sizila, who oversees an extensive network of community mobilisers who go from shack to shack educating people about HIV, tuberculosis and sexually transmitted infections.

“We distribute 1?million condoms a month in Khayelitsha through our community mobilisers and volunteers,” Sizila says proudly.

Back in Duduza, Mtsweni helps monitor the supply of essential medicines at 18 health facilities and also hosts regular health talk shows at the local eKasi Konexion (eK FM) community radio station.

Talking is a big part of Mtsweni’s life. She is often called on to give health talks at local clinics on issues such as cervical cancer and diabetes, organising protests at the hearings of alleged rapists and holding regular meetings to help community members understand how to advocate for their rights at health facilities.

Her friend Khosi Dlamini is convinced that Mtsweni’s extensive medical knowledge saved her life when doctors ignored her symptoms.

Dlamini fell sick in 2010, shortly after joining TAC. She turned to Mtsweni after being sent away from the local clinic without help.

“Because of her knowledge about the medication, she thought I had lactic acidosis [a potentially fatal side effect of one of the ARVs],” says Dlamini.

“Fikile pressured the doctor, who examined me again and saw that I should be admitted. She saved my life. Now my viral load is undetectable and it’s because of her?–?that’s why I say she is my best friend,” she adds.

Meanwhile, the quiet and humble Sizila is the superglue that holds the TAC branches together. TAC administrator Kholeka Rasalanavho says he is the first person who people go to when there are problems.

“If someone has been attacked at 3am and needs help, he will be there. No questions,” she says.

“We would be lost without him. Even now, people are waiting outside to talk to him. Other organisations have offered him a lot of money to go and work for them, but he stays with us.”

But 20 years ago, while the rest of South Africa was enjoying its first taste of democracy, 20-year-old Sizila had just tested HIV-positive and refused to accept the result.

It took two further tests, numerous sicknesses and a move from Uitenhage in the Eastern Cape to Khayelitsha before he accepted his status.

“I was in and out of sickness so, in 2004, I accepted that I had HIV and needed ARVs,” says Sizila. “TAC was running treatment support groups for people starting ARVs, so I joined one to learn about HIV.”

With an affinity for hard work and motivating people, Sizila was soon elected TAC branch secretary for Khayelisha while he was also active in the ANC Youth League.

But after being disciplined by the ANC for calling then president Thabo Mbeki an Aids denialist, he decided to leave politics.

“The ANC defends individual leaders even when they are wrong, but civil society stands for all the people,” says Sizila. “The TAC is my passion. We call TAC ikhaya because it is a home for us. If it closes, I will be very frustrated,” he says.?–?Health-e News

This series is developed in partnership with the Southern Africa Trust and the African Grantmakers Network. To support a cause, visit

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