Despite treatment advances, AIDS stigma lingers in rural SA
South Africa has the world’s biggest AIDS epidemic, with nearly 20 percent of all adults HIV positive.
QUDENI - When Eunice Khanyile opened a soup kitchen in a rural village in South Africa last year to help HIV-positive residents get the nutrition needed to stay healthy, not one person came.
When it comes to AIDS, "the stigma is a huge problem", she said. "Those with the virus did not want to be seen coming here. People do not want to open up to others about their status."
Today, just over 200 people eat the lunch cooked daily at the yellow-painted cement block kitchen in Qudeni, drawn by the smell of butternut and lentils and the banging of pots and pans.
The kitchen now simply serves all who are hungry although Khanyile believes many are HIV positive.
"Some are positive. Some are not. They simply don't disclose," said the busy woman in a brown-and-white headscarf, who runs the government-supported kitchen.
Over the last decade, an HIV-positive diagnosis has turned from a death sentence to a manageable problem in South Africa, due to cheap, widely available antiretroviral treatment.
South Africa has the world's biggest AIDS epidemic, with nearly 20 percent of all adults HIV positive, and more than 2.7 million of an estimated 6.3 million people living with the virus are now on treatment.
But the stigma surrounding the disease has barely budged, particularly in rural areas like Qudeni, a remote village in South Africa's KwaZulu Natal province where hundreds of children have been left orphaned by the virus.
At the village health clinic, mothers refuse nutrition supplements for their malnourished children "because people believe if you take supplements you are HIV-positive", said Sister Jacqueline Nludla, who manages the clinic.
Efforts to create support groups for the nearly 300 people on antiretroviral treatment at the clinic have struggled, pulling in at best 13 members, she said.
"I don't know why there is such high stigma for this disease," said Nludla, as lines of elderly patients and mothers entertaining babies sat patiently in the clinic's waiting room.
Community workers think there could be reluctance to talk about the virus because HIV is often a sexually transmitted disease. Themba Mchunu, Qudeni's traditional leader, thinks some of the hesitation also comes from not wanting to lose face.
"In my culture people don't like to divulge your sickness. It's about pride, more or less. Just like in my culture, when I grew up, you would never go to people and say, 'I am hungry'," he said, behind the counter of the general store he runs in the village.
But Mamtombi Shange, the only HIV-positive person in Qudeni who regularly and publicly talks about her status, thinks the stigma really comes down to one thing, fear, particularly of being alone.
"People think, 'What is my partner going to say? Will he leave me? Will I find a new one?'" she said.
Women, rather than men, are usually the ones tested for the virus, often when they become pregnant, she and health officials in the community said. Because of that, it is usually women who face delivering bad news to a partner.
"If women say they are positive, they are seen as the culprit. The partner says, 'You have come to me with this disease, and you are a bad person,'" Shange said. The women are sometimes thrown out of their home and abandoned, even though the man may have been the one who passed on the virus.
For that reason, many people are careful to keep their HIV status secret, a problem that fuels new infections, she said.
"When women meet a new boyfriend and think they have found love, they won't tell their status," she said. "It's a cycle that goes on and on and on."
But speaking up about the virus, while frightening, can have benefits, said Shange, who wears a yellow campaign t-shirt sporting the face of President Jacob Zuma and lives in a tidy concrete house complete with electricity and a television.
She tested positive for HIV in 2007, when her daughter was four, and began treatment. Her two brothers, whose tests also came back positive, "kept it a secret. They died," she said. "I was the strongest of them."
Now, most of a decade later, she is around for her 11-year-old daughter and mostly feeling fine, she said. What indignities the disease has brought she shares with a couple of close friends who are also HIV positive.
"We talk openly about it and turn some things into jokes," she said. The treatment drugs have produced some odd lumps on her body, she said, and a brawnier look, so she tells friends she's become "superwoman".
Her family has also been supportive, something that "made it hard for others to discriminate against me," she said.
Community workers say Qudeni needs many more people like her to break the stigma surrounding HIV.
"She's a role model," said Nhalni Hlengiwe Dlamini, a community development worker in the village. "She shows people that life can go on."