In South Africa, stigma keeps HIV patients from treatment
By Bronwen Dachs
Catholic News Service
Each week, 2,000 women ages 15-24 are infected with HIV in South Africa.
In poor communities, young women are mostly infected through sex with older men who provide for them and, while testing is easy and readily available, few men get tested until they are seriously ill.
“Men have told me that the reason for this is that the clinics are mostly staffed by women and that women talk too mucha,” said Dr. Annette Houston, who works for Hope, an HIV outreach project with international Catholic funding.
Houston works at a pediatric HIV clinic in Delft, a township on the outskirts of Cape Town. She told CNS unless HIV-positive women and girls are taking antiretroviral drugs, if they contract HIV while breastfeeding they can pass on the virus to their babies. Houston said she sees an “urgent need to persuade breastfeeding women to come for testing every three months.”
In trying to get HIV-positive men to get treatment, Doctors Without Borders and other organizations have begun setting up HIV clinics primarily for men.
Pauline Jooste, who oversees Hope’s community outreach projects, said being HIV-positive still carries a lot of stigma for men and women. She said some mothers will not tell their children that they, too, are infected.
In an interview at Hope’s office in Blikkiesdorp, a temporary settlement area within Delft where 15,000 people live in corrugated tin shacks, Jooste said that, to understand the reluctance to talk about being infected, “you need to bring it home.”
When health officials ask women when they plan to tell their children they have HIV, “when he or she is ‘old enough’ is the answer you hear,” Jooste said.
“Imagine how difficult it must be to tell a teenager she is HIV-positive and wait for her to ask, ‘So how did you get HIV, Mom?’“ she said.
At Delft clinic, “we try to initiate conversations” between mothers and their HIV-positive children, Houston said, noting that children should know their HIV status by the time they are 10 or 11 years old.
“Often, the mother is battling with anger or shame and needs someone to talk to,” she said. “We give mothers and children books that they can read together that can help children understand what HIV is and how to live with it.
“Sometimes the children know, but they don’t tell that they know, which creates an unhealthy dynamic in the family,” she said.
South Africa’s HIV epidemic is among the most severe in the world. According to U.N. estimates, 6.4 million people —12.2 percent of South Africa’s population — are HIV positive.
Dominican Sister Alison Munro, director of the AIDS office for the Southern African Catholic Bishops’ Conference, said about 3.4 million people are on antiretroviral drugs.
The risk of HIV transmission is enormously reduced when those infected take antiretroviral drugs regularly, Sister Munro said in a telephone interview from Pretoria.
Orphans and other vulnerable children are the main focus group of the AIDS office and “we are working on getting as many tested and on treatment” as possible, she said.
Sister Munro said South Africa has 41 orphan programs funded by PEPFAR, the U.S. government initiative to provide AIDS relief, and there are more than 100 other programs in dioceses and parishes across the country.
Until 2008, when a new health minister was appointed, South African officials infuriated AIDS activists by questioning the link between HIV and AIDS and holding back on providing antiretroviral drugs. But Houston said that, since then, “I’ve seen kids born with HIV finish high school and go to college, which is so rewarding.”
The drive to have everyone who tests HIV-positive on medication brings with it the danger of developing drug resistance, she said, noting that in the past treatment was provided to HIV-positive patients only when they became at risk of developing AIDS.
“There’s no coming back from drug resistance,” Houston said, noting that church and other programs work hard to ensure that people adhere to their treatment regimen.
Avoiding drug resistance “is our biggest challenge now, and we can’t leave children in a situation where they take drugs on an ad hoc basis,” she said.
Hope project staff sometimes move children into temporary care so that their HIV treatment can be managed while the project works to bring stability to their home environments, Houston said.
“Sometimes the mother needs to go for drug or alcohol rehabilitation,” she said, noting that substance abuse is very common in South Africa’s poor communities.
Adherence to a medication regimen among teenagers “is notoriously bad, but this is not unique to HIV,” Houston added.
Jooste said the Hope project services up to 40,000 people a month. She said HIV-positive patients in Blikkiesdorp and other areas are given reference letters for health centers, shown where to go and “told to look out for our health workers wearing red shirts that say Hope.”
The project’s community workers check that patients comply with their medication needs and even accompany those with no income to government offices, where they can apply for social grants, Jooste said.
“A lot can be achieved when you have someone speaking on your behalf,” she said.
Blikkiesdorp, which means tin-can town in the Western Cape language of Afrikaans, has an unemployment rate of about 65 percent, and most residents are on a list for free government housing. Many who live in the area are immigrants from Somalia and Congo and fear attacks on foreigners.
“We never ask for identification documents; we are here to serve everyone,” Jooste said, yet immigrants “don’t even come to our regular family health days where clinics bring their general services to our premises.”