December 1 is #WorldAisDay: HIV was discovered more than 30 years ago. Why do we still stigmatise HIV-infected people?
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.
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 for the condition he was suffering from: HIV infection.
Stigma is rife
South Africa’s National Aids Council and the Human Sciences Research Council published the results of an HIV stigma index in May 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.
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.
Spreading the virus
People who don’t know they are infected with HIV would obviously not know that they require treatment. According to the latest report by the Joint United Nations Programme on HIV and Aids, released this week, only 65% of South Africans have been tested for HIV. In other words, at least a third of us have no idea whether we’ve contracted HIV. If we allow stigma to prevent us from getting (regularly) tested for HIV, we may be spreading the virus.
HIV-related stigma is by no means restricted to South Africa – Hollywood actor Charlie Sheen’s recent announcement that he’s HIV positive confirms that. Sheen, an extremely wealthy person, only revealed his status four years after he was diagnosed and after he had paid millions of dollars in blackmail money to prevent sexual partners from distributing pictures of his treatment.
If Sheen was terrified of the stigma he would face when the world discovered his condition, how much more frightened would a poor South African from Munsieville be? It’s often not only a fear of “outsiders”. Many HIV-infected South Africans can’t even tell their family about their condition.
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 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.
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 isn’t Charlie Sheen.
* Not their real names
Mia Malan is the founder and editor-in-chief of Bhekisisa. She has worked in newsrooms in Johannesburg, Nairobi and Washington, DC, winning more than 30 awards for her radio, print and television work.