Tackling Stigma in South Africa

Every market needs an index to benchmark itself. In South Africa they’re setting one to measure public attitudes of intolerance and stigma toward people living with HIV and AIDS.

This so-called Stigma Index will be a biennial national survey examining prevailing moods, says Glenda Gray, president of the South African Medical Research council and co-founder of an internationally lauded perinatal HIV research unit in Soweto.

“We expect the first national survey on stigma to happen next year, and we’ll start tracking it over time,” Gray says, adding that there is still huge unease around both HIV and tuberculosis in the country. “It impacts on whether people get tested, treated, and retain care.”

The Stigma Index will be monitored under the South African National AIDS Council, a government-sponsored group aimed at implementing research findings and novel demonstration projects. The council helped to roll out Pretoria’s promotion of male circumcision as a tool in preventing HIV transmission and the establishment of the country’s human papilloma virus vaccine practice, which health officials see as an analogue to how an AIDS vaccine would be distributed.

Stigma is an amorphous concept. “There’s stigma in action, attitude, prejudice,” says Zoe Duby, author ofHeterosexual Anal Sex in the Age of HIV and a research fellow at the University of Cape Town. But as amorphous as it may be, it has a real effect on behavior and public policy, Duby and Gray say.

Duby’s studies of survey terminology in public health research found that terms used for specific sex acts are so ambiguous or elided as to be confusing to subjects, and therefore confounding to researchers. “People can feel shame and embarrassment and are unwilling to talk about it to anyone,” Duby says. “And if they do disclose, they could be judged by, for example, a health care provider. If I present with an anal STI [sexually transmitted infection] to a nurse—we know that happens here—nurses are incredibly judgmental.”

As US Military HIV Research director Nelson Michael remarked in a media room in Cape Town this afternoon at the HIV R4P conference, health care workers can themselves be stigmatized, pointing to a New York Timesreport today about continuing fallout in America over the Ebola virus.

It could be worse. There’s shame and then there’s the fear of the law and institutional violence as in Uganda and other African nations where homosexuality is illegal and marginalized communities are actively hounded.

Gray says with South Africa’s Stigma Index at least there will be a benchmark. “It’ll help us to direct our mass media programs,” she says. “If we find nurses or teachers are stigmatizing, it’ll help us direct targeted programs in schools.” South Africa, with one of the highest-profile HIV epidemics in the world, is chasing a goal to reduce HIV prevalence, mortality, and incidence by 50 percent, with domestic spending levels on HIV-related programs expected to reach 16 billion rand (US$ 1.3 billion) by 2016. – Michael Dumiak