HIV stigma: ‘The fear of being blamed for being different is too much to face’


The morning sun had risen. The new year was five days old. And then Mthombeni Skosana* took his last breath. It was just after 5am on Monday January 5. Unaware of the whispers of death in Skosana’s shack, many of the inhabitants of Munsieville, near Krugersdorp in Gauteng, had started to leave their dwellings to take public transport to work.

Skosana’s illness was a deep secret; only his wife knew what had killed him. It was a chronic condition that was treatable; the Munsieville clinic, a 20-minute walk from Skosana’s shack, provided free medicine, and Skosana would have been able to get a three-month supply at a time. When it was in stock, that is.

Although the drugs wouldn’t have cured him, they would have kept his illness under control. They would almost certainly have saved his life. But the 33-year-old man was too scared people would see him fetching the pills.

The medicine is relatively easy to administer – doctors often compare the medication to diabetes treatment; some even say Skosana’s condition is easier to treat than diabetes as it doesn’t involve a strict low-sugar diet for the patient.

“Her husband’s killer was not like diabetes
But inside her shack, next to her husband’s body, Thabile Skosana* knew her husband’s killer was not like diabetes. People don’t think diabetics are dirty or immoral. They’re not carriers of a virus everyone fears. Diabetics have a “normal” illness. They can go and fetch their medication without being condemned.

Part of the reason Mthombeni kept his illness a secret was to protect Thabile. She hasn’t contracted the virus responsible for her husband’s condition, but that doesn’t really matter: she would face judgment anyway, as the virus is mainly transmitted through sex.

Stigma – the shame or disgrace attached to what is regarded as socially unacceptable – is something the Skosanas had come to know intimately since Mthombeni’s diagnosis two years ago. To the Skosanas, the fear of being branded different, and being blamed for that difference, was too much to face.

Mthombeni chose to stay without treatment rather than be caught out, despite his country having the largest public sector treatment programme in the world for the condition he was suffering from: HIV infection.

One in three people with HIV experience discrimination 
South Africa’s National Aids Council and the  Human Sciences Research Council published the results of an  HIV stigma index in May last year for which they interviewed more than 10 000 HIV-positive South Africans.

One in three HIV-infected people experienced discrimination, such as verbal assaults, physical harassment or being gossiped about. Although this level of discrimination is considered “moderate”, the more disturbing finding of the index lies in what is referred to as “internalised stigma”: close to half of participants infected with HIV reported that they started to believe the negative things those around them said or thought about them and, as a result, withdrew from society, avoided “health-based interactions” and abandoned planning for the future.

Internalised stigma prevented Mthombeni Skosana from visiting his clinic to get treatment. Of the 43% of HIV-infected participants experiencing internalised stigma, 11% believed they should be punished for their condition and another 11% became suicidal.

Stigma spreads the virus
When we stigmatise people infected with HIV, we literally spread the virus and death. Studies have repeatedly shown that, when HIV-infected people take their antiretroviral treatment correctly, their viral loads, or the amount of virus in their bodies, become suppressed and it becomes almost impossible for them to transmit the virus to others. If stigma prevents HIV-infected people from getting on to treatment, the virus is allowed to flourish.

People who don’t know they are infected with HIV would obviously not know that they require treatment. According to health department figures, 76% of adults in South Africa have been tested for HIV. In other words, almost a quarter of us have no idea whether we’ve contracted HIV. We only have four years left, until the end of 2020, to increase the percentage of people who know whether they’re infected with HIV to 90% – a target set by the United Nations for all nations.

“I have diabetes and they’re running out of my medication”
Stigma also makes HIV-infected people, even those on treatment like Gloria Letaba*, live double lives. Letaba collects her antiretroviral treatment from Helen Joseph Hospital in Auckland Park. She takes her pills meticulously and has had a suppressed viral load for three years. But she can’t tell her employer; she’s a domestic worker and is scared she might lose her job.

Until recently, Letaba only had to take off a morning once in three months to collect her quarterly supply of treatment. She could get away with telling her employer she was going for a dental or medical checkup. But three months ago, things changed: Helen Joseph ran short of long-term antiretroviral stock, and told her she had to collect her treatment monthly until the pharmacy sorted out the problem.

The HIV clinic’s queues started to get longer, which meant Letaba had to take off three-quarters of a day of work each month. Her employer started to ask questions. Fearful of HIV-related stigma, Letaba told her employer: “I have diabetes and they’re running out of my medication.”

Diabetes, because she wouldn’t lose her job because of it. Diabetes, because her employer is unlikely to think she brought the condition on herself and “deserved what she got”.

Aids exposes our prejudices
Aids is a mirror that reflects how we think about society. It exposes our prejudices and our lack of ability to embrace diversity. The Aids looking glass is telling us: although we’ve made progress, we have a long way to go towards breaking down our bias – more than 30 years after the discovery of HIV. It’s not the government’s job alone to address HIV-related stigma. We should start with ourselves and our families.

If we don’t, we’re standing in our country’s way of getting 90% of people tested for HIV, 90% of those who test positive on treatment, and 90% of people who are on treatment virologically supressed so that they stay healthy and are also unlikely to transmit the virus to others – all by 2020. And, ultimately to end the Aids epidemic, along with the rest of the world, by 2030.

In South Africa, where health department figures show that close to one in five adults is infected with HIV, we’re all likely to know someone with HIV. Someone who is too scared to tell us. Someone who might be you or me.  

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Mia Malan
Mia Malan
Mia Malan is Bhekisisa's editor-in-chief and executive director. Malan has won more than 20 African journalism awards for her work and is a former fellow of the Reuters Institute for the Study of Journalism at Oxford University.

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