It’s a journey that has seen them move from every emotion and question of “why me?” and “how did this happen to me?”, as they came to accept and live with their HIV diagnosis and what they would need to do to live long and healthy lives.
Cape Town-based Busi Maqungo, 45, who lives in Parklands, found out she was HIV-positive shortly after her late daughter was born in 1999.
Already a mother to a 7-year-old boy, Maqungo’s daughter was only a month old when she became severely ill and was in and out of hospital. She admits that when she was diagnosed she was still “naive” about what HIV was, but her turning point was when her baby died after surviving for nine months.
“I felt for a long time then that I had been wronged that I was never given the opportunity to protect my child, as I should have. Even though I had a little bit of information on it, it wasn’t enough. I felt we were let down by the system,” she said, speaking ahead of World Aids Day on Friday.
This year’s World Aids Day campaign, "My Health, My Right", was launched by UNAids and focuses on the right to health and explores the challenges people around the world face in exercising their rights.
Maqungo recalled that in the 1990s, her HIV-positive acquaintance, who later turned out to be her friend, was fortunate enough to be on the Médecins Sans Frontières (MSF) HIV programme in Khayelitsha for pregnant women, and had been put on ARV medication. Her child was born HIV-negative.
The programme, which was offered by MSF and the provincial Department of Health to HIV-positive people, was the first HIV programme in the country.
In May 2001, the Khayelitsha site became the first public sector service to provide antiretroviral therapy. “There were a few people put on treatment and they had access to Zidovudine (AZT). There was a lot of politics around treatment at that time and unnecessary debates when people just needed treatment,” she recalled.
Fast forward to 2006: Maqungo was diagnosed with TB after a persistent pain in her back. “Then, my CD4 count was at 365 and to be put on treatment you needed to be at below 200, but I was put on ARVs because of the TB. I took five pills a day just for TB they were huge and horrible. It made me understand why many people defaulted,” she said.
Maqungo was on a combination of AZT, emtricitabine and stocrin (efavirenz). But, in 2009, a work colleague noticed something was amiss. The fat distribution on her body was not even, and she had developed a hump - one of the notorious side-effects of ARVs
“She said: 'Busi, something about your body is changing your upper body is growing but your legs are shrinking'. That’s when I noted the side-effect of AZT. I was devastated. I’m one of those women who have an African-woman shape with a bum and hips and the change to my body traumatised me”, Maqungo said.
She convinced her doctor, based in Langa, to remove her from AZT and change her to the then fairly new Tenofovir - which also took some effort. “I fought for my body I fought for my shape. I started to become more active and I watched what I ate to get back to my shape. A lot of people during those times defaulted because of the body changes. Some pills changed you completely so that you wouldn’t recognise yourself,” she said.
Soweto-born Koketso Mokhethoa, who was born with HIV 26 years ago, is one of many South Africans who has been on antiretrovirals for a long time. Her parents died as a result of HIV-related opportunistic infections - leaving her grandmother as her caregiver. She remembers starting ARV treatment when she was 11 through ingesting a syrup twice a day.
“I didn’t know much then, but my grandmother whom I lived with just told me to take the medication. It was when I was 13 that my grandma brought a booklet explaining the medication. I realised then that I had HIV. I was very angry with everyone and everything and would ask, ‘why me?’” Mokhethoa said.
The then Grade 8 pupil attempted to commit suicide, but was found in the nick of time by her grandmother, who rushed her to hospital.
“I mean, no one would want to live with this I was sent to see a psychologist and tried to accept this, but it wasn’t easy. I had all these questions - my grandmother tried but couldn’t answer all. I used to also have a lot of diarrhoea and my appetite would differ each day,” she added. When she was 16, she switched to pills and still currently takes one pill in the morning and two at night.
“I haven’t really had a physical problems with the current pills, just an attitude one. I was annoyed that I had to be on them. For a time, people around me would tell me that I should be happy to be alive and just take the pills, but people who are not on ARV medication don’t understand our reality,” she said.