Confronting stigma is at the heart of tackling the country’s HIV/Aids challenges. For the first time, a new survey sheds light on issues of internal and external stigma. According to a Daily Maverick report, the state now needs to turn the results into policy initiative because, simply, stigma is killing people.
The South African National Aids Council (SANAC) launched The People Living with HIV Stigma Index, the first large-scale survey on HIV and TB-related stigma in South Africa at the SA Aids Conference 2015. It provides an objective measure of stigma, aiming to link the results to improving policy and service delivery efforts. It offers an objective view to what is often a subjective issue and can serve as a baseline for future comparisons.
Researchers, through networks like National Association of People Living with HIV, Treatment Action Campaign, and Positive Women’s Network, surveyed 10,473 HIV-positive individuals, 15 years old and above, in 18 districts across the country, two per province, and found moderate levels of stigma exists in SA, with strides having been made and lower levels of stigma in SA than in other African countries.
Referring to the report, Deputy President Cyril Ramaphosa said: “Sometimes discrimination is not overt. It could be a glance, a whispered remark, a social snub. There are times when people living with HIV internalise the stigma, undermining their own sense of self-worth and dignity. It is for this reason that we are launching this campaign against stigma and discrimination.”
SANAC identifies four different types of stigma. External stigma refers to others devaluing and discrediting those who are HIV positive. Internalised stigma occurs when people living with HIV begin to believe those negative things, resulting in negative views on an identity based on HIV status. Anticipated stigma is the expectation of being treated differently because of one’s status and courtesy stigma is defined as the perception or experience of stigma due to association with an individual or group. The report also looks at stigma related to TB and notes that HIV-related stigma often occurs on top of stigmas related to race, class, and gender.
“The short story is we are making so much progress but we have so much more work to do,” said Dr Fareed Abdullah, CEO of SANAC, on the efforts to tackle HIV/Aids. While the roll-out of testing efforts, antiretroviral drugs and prevention of mother-to-child-transmission programmes have made inroads in tackling HIV/Aids, there are still 400,000 new infections each year in South Africa and around 200,000 HIV/Aids related deaths. Stigma plays a key part.
Abdullah said it was important to have HIV-positive researchers collecting the data to open up the conversation. They asked questions like, “How they’re treated by other people, what they thing about their own disease and what sort of problems they have if they go to health services, schools?”
Overall, 36% of respondents had experienced external stigma. Those who experience the highest levels of external stigma are more likely to be female, 15-24 years old, poor, living with HIV for two to five years, living in a small town, and married or with a partner but temporarily not living in the same house. KwaZulu-Natal, Mpumalanga and Free State featured the highest levels of both external and internal stigma. They also have the highest prevalence of HIV.
A large majority of respondents said they had never been excluded from social gatherings, but those who had listed their HIV status as the main reason. Most people said they had not been gossiped about, physically assaulted or harassed, discriminated against, or suffered physical or emotional abuse from a partner in the last 12 months. Of those who had, around a third across the different categories put it down to their HIV status.
Only 5% of respondents had to change accommodation in the last year, half of whom put it down to their HIV status. While only 11% had lost a job or income source in the last 12 months, around 40% indicated their status played a role. The large majority of respondents were never denied health services, but 8% were denied family planning services in the last 12 months. Shockingly, the report found seven percent of respondents had been sterilised against their will.
“From the very start it has probably been the most stigmatised disease in human history,” said Constitutional Court Justice Edwin Cameron, calling internalised stigma “the great unspoken issue”. “The main effect of internalised stigma is death.” Across society, it remains difficult for many people to talk about HIV/Aids because it is sexually transmitted, but the silence undermines treatment and prevention programmes.
The survey’s internalised stigma results were significantly higher than external stigma, with 43% of respondents experiencing internal feelings of stigmatisation. Of those, 31% blamed themselves, 29% felt ashamed, 28% felt guilty and 22% reported low self-esteem. There were 41% of respondents who exhibited avoidance behaviour because of internalised stigma. The survey found 32% of respondents decided not to have children because of their status, 15% had decided not to marry, 10% isolated themselves from family and friends, and 12% chose not to attend social gatherings. A total of 39% of total respondents said they feared potential stigma.
The report found those most likely to experience internalised stigma were 15-24 years old, living with HIV for under a year, without a formal education; those with money for things like holidays as well as those without enough food. Again KZN, Mpumalanga and the Free State saw the highest figures.
Regarding disclosure, 89% disclosed to their partners, with 68% disclosing to their children. Worryingly, 28% suggested their status might have been disclosed without their consent, with 24% of those unsure whether their status might have been disclosed. There were 30% of respondents unsure if their medical records are confidential. In the main, those who disclosed their status found they were supported after sharing their status.
The aim of the index is for something to be done to improve the situation. Its recommendations: share the results, start a national campaign against stigma, address internalised stigma on individual levels and through existing support structures, strengthen the confidentiality of health records, address poverty and food security and continue to monitor HIV and TB-related stigma. The key thing is to measure in three more years and do something more. Such efforts are at the heart of continuing to confront the country’s HIV/Aids challenge.
Almost 500 women in South Africa were robbed of the chance to have children after they were sterilised against their wishes because they were HIV positive. The Times reports that this came to light following the release of the SA National Aids Council’s stigma index. It is the largest number of reported forced sterilisation cases ever uncovered in the country.
The index was compiled after 10,473 people living with HIV in 18 districts across the country were interviewed to determine the level of stigma and discrimination against people with HIV. The 6,719 women in the sample were asked if they had been forcibly sterilised because of their status. A total of 498 said yes, according to Professor Khangelani Zuma from the Human Sciences Research Council, which conducted the survey. Zuma was confident the data was correct and the women had understood the question. But all respondents were anonymous and cannot be traced so action could not be taken against the Department of Health or hospitals at which sterilisations took place.
The report notes that according to the survey results, the highest percentage of forced sterilisation took place in Eden in Western Cape (22%), Buffalo City in Eastern Cape (20%) and Sedibeng in Gauteng (19%). Sethembiso Mthembu, founding director of the NGO Her Rights Initiative, said: “The data of 498 cases basically confirms the practice is widespread. It is systematic. “It is not a few rotten apples. This number suggests to us that this is the implementation of some kind of policy that the Department of Health needs to explain. “It costs money to sterilise people, therefore it must be coming from a silent government policy. The department must be held accountable,” Mthembu said.
But the spokesperson for the Department of Health, Popo Maja, said it was not government policy to force sterilisation. According to the Sterilisation Act, written consent of a patient who understands what they are signing is needed before sterilisation can take place.
The report quotes the head of the SA National Aids Council, Fareed Abdullah, as saying that the sterilisation figures needed to be interpreted with caution as they were based on self-reporting of women rather than biological examinations. “The figures must be interpreted with caution because this stigma survey was not set up to measure sterilisation or coerced sterilisation. It was to measure stigma. The only conclusion we can draw is that this might be a problem and the Health Department should investigate it further.”
In response to the high levels of stigma the survey indicated, The South African National Aids Council has launched a legal support programme for low income people facing discrimination because of their status. The National Aids Council also launched an advertising campaign to promote the service.