‘HIV struggle heroes still unknown’
Sebokeng Hospital, because of fear of being recognised and stigmatised.
Sarah was a member of an HIV support group and had been advised to go to CHB because it was home to the Perinatal HIV Research Unit. By the time Sarah arrived at the unit, the South African Intrapartum Nevirapine Trial (known as Saint) was up and running, proving that the antiretroviral (ARV) nevirapine was both safe and effective in preventing mother-to-child transmission.
Sarah enrolled and told me that, because she lived so far away from CHB, she had been given a single nevirapine tablet to take when she went into labour. But on July 18 2001 she went into labour prematurely.
In her own words: “Because I did not know that I was in labour when the ambulance took me from home, I did not bring my nevirapine tablet with me. At Sebokeng Hospital, I told the doctor I was HIV positive. But they could not give me nevirapine because it was not available. I gave birth to a boy. They took my baby away because he was very small. I still wanted my baby to have nevirapine after he was born, but because he was so small they could not take him to CHB. I asked for an ambulance, but found out that the hospital had arranged a bus to transport my premature baby to CHB. I felt that this was not safe, so he did not receive the medicine. Now it is too late.”
Sarah’s son was named Kgotso. That day, as she told me her tale, her body was racked by bursts of sobbing. This made her appear even more pathetic and tragic. But by giving her story and becoming one of the first brave women to trust the Constitution, she began her own process of recovery and empowerment. That afternoon she took the first steps on a journey towards reclaiming her dignity.
One of the strengths of the TAC was our media profile. One of the weaknesses was that most reporting focused on Zackie Achmat and me. As a result, the real heroes of the TAC struggle are still largely unknown. The stories we were telling at second hand should have been sought from and told by women like Sarah, Vuyiseka Dubula, Busisiwe Maqongo, Hazel Tau, Joanna Ncala, Portia Serote, Linda Mafu, Portia Ncgaba and many, many others. Each will have a different personal story with common themes. It’s not too late.
In Cape Town, Vuyiseka Dubula was one of the activists at the forefront of the TAC. She pioneered the TAC’s treatment-literacy campaigns and in 2010 was elected our general secretary. In the years after Vuyiseka joined the TAC her daughter, Nina, was born — HIV negative. In 2013 she ran and completed the 89km Comrades Marathon. We crossed the finishing line together, hand in hand, in 10 hours and 53 minutes. In 2014 her son, Azania, was born — HIV negative. In 2017 she will complete her PhD.
Over the nearly two years that I knew Sarah, I witnessed the unfolding petals of a new personality. The person I first encountered as a shrivelled human wreck came back to life. If Sarah had lived, the story she would have told would have been similar but different. We’re all variations on a theme.