Ethan Zuckerman’s online home, since 2003

Zinhle Thabethe – We are not the same

Zinhle Thabethe is an AIDS activist from Durban, South Africa. She was diagnosed with HIV five years ago and told she needed to get treatment immediately. She lost her job, as her employer tried to decide whether she was “an asset or a liability” as a person with HIV. But she managed to get anti-retroviral therapy, which allowed her to survive a long struggle with opportunistic infections: TB, pneumonia, meningitis.

She’s one of the very lucky ones – her brother and sister both have HIV, and her brother has already died. 10% of South Africans are receiving anti-retroviral drugs – it’s an even smaller percentage across sub-Saharan Africa. She notes “we are not the same”, speculating that despite the fact that we all bleed, all cry, we get treated very differently depending on where we live and where we come from. She quotes Andrew Natsios, who was explaining why USAID wasn’t funding ARV drugs for Africa while he was the USAID administrator:

“Africans do not know what western time is. Many people in Africa have never seena clock or a watch their entire lives.” Because ARV medication has to be taken at careful intervals, Natsios suggested this shouldn’t be a priority for the continent. Thabethe points out that she’s somehow managed to watch the clock carefully enough to survive for five years…

Despite the fact that 50% of adults in some South African communities have HIV, despite the fact that 60% of pregnant women in clinics in KwaZulu Natal have HIV, despite the fact that 80-90% of hospital beds are filled with HIV patients, there’s a terrible stigma against AIDS in South Africa. Patients are sometimes dropped off at the hospital, and left to die – families don’t return to claim the body and to bury their dead. “HIV prunes people of humanity, dignity, and the South Africa culture of caring for your loved one through death.”

The most personal part of Thabethe’s story is when she talks about her brother, who “delayed testing, as most in South Africa want to do”. He was diagnosed with HIV and TB in 2003, ended up taking 6 drugs and was able to survive. But he got reinfected and died. She watched, knowing the ARV drugs she was taking would have let him survive… but there was no way to afford the drugs for him as well. Of the seven adults in her family, three were HIV possible, two negative, and two have not been tested. Four have TB.

Tuberculosis is a new battleground in South Africa. In inner-city communities in the US,
6 of 100,000 people have TB. In KwaZulu Natal, the rate is 1700 per 100,000. Increasingly, doctors are seeing multiple drug resistant TB and “XDR” – extremely drug resistant TB – this means that treatment success rates are less than 50%. Because treatments aren’t completed, resistance rises, and new, killer strains of TB are emerging.

She tells the story of touring in the US and feeling ill and weak in Boston – she was treated with the best of drugs and technology at Mass General Hospital. At the same time, her mother visited a clinic in South Africa, coughing blood, and was sent home, told she had a common cold. She’s now been diagnosed with TB. Her message – the idea that we’re all the same is a dangerous idea – we need to move to a future where we’re all treated the same as we face this deadly, but treatable, diseases.

Zinhle sings with the Sinikithemba choir, a touring choir of South Africans who are living with HIV. The members met while attending the same clinic, and ended up forming a support group as well as a performance troupe. They close the session with a performance which includes traditional music as well as songs designed to raise HIV awareness, including one with a chorus, “If you are infected, we are also affected.”

One Response to “Zinhle Thabethe – We are not the same”

  1. quixote says:

    Nothing I didn’t know … and yet completely heartbreaking.

Trackbacks/Pingbacks

  1. …My heart’s in Accra » Pop!Tech 2006 - thank you - [...] - The message from Dr. Serena Koenig and Zinhle Thabethe that it’s not okay to accept deaths in the …
  2. …My heart’s in Accra » Twelve great talks to watch, and no excuses for being bored. (Or boring.) - [...] Giving a much more personal story of the impact of HIV in an African context was Zinhle Thabethe’s speech …
  3. …My heart’s in Accra » Pop!Tech: Acceleration and managing AIDS - [...] first project the Accelerator will fund is Project Masiluleke, launched by Zinhle Thabethe, an HIV counselor in KwaZulu Natal …
  4. El Oso » Archive » PopTech Innovation Fellows: From Conversation to Social Change - [...] first project to be supported by the Accelerator is Project Masiluleke led by Zinhle Thabethe, which we will be …

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