Still fighting the stigma of HIV and Aids

Those living with the virus have both to defend against ill treatment within their communities and fight protocols in health facilities that infringe on their dignity and privacy.

Although antiretroviral (ARV) drugs to manage HIV and Aids are widely available, stigma towards people living with the disease still exists in communities and health facilities across the country. 

At some clinics, people living with HIV and Aids are forced to queue separately to collect ARVs. This discrimination infringes on the privacy of those living with the virus, says 27-year-old Thulina Moukangwe.

“If you are in that line, anyone who comes in the clinic can see that you are queueing in the line of people who are living with HIV, and that means you are HIV positive,” she says.

Moukangwe was diagnosed with HIV when she was 17. She didn’t tell her family her test results because of the stigma. When she finally found the courage to reveal her status, some people understood, but others called her names. “Some still call me names, even today. Names like uyafa [she’s dying],” she says.

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This discriminatory behaviour often results in mental health disorders for these patients, she says. “That’s why a lot of people [with HIV and Aids] suffer from depression. People end up killing themselves because of the name-calling. I had anxiety, and I went into depression because of the name-calling.” 

Although Moukangwe no longer gets upset by people’s opinions of her HIV status, others battle to get over the judgement and discrimination. “They need to be supported,” Moukangwe emphasises.

Clinic protocols lead to defaulting on treatment

A community-based study – HIV/Aids Stigma in a South African Community by Maretha Visser, Jennifer Makin, Alain Vandormael, Kathleen Sikkema and Brian Forsyth – argues that the stigma associated with the virus undermines interventions meant to prevent and treat it. 

For the study, 1 077 residents of two communities in the City of Tshwane completed a questionnaire on how individuals and community members relate to HIV. The results revealed that in spite of high levels of HIV exposure in these communities, stigma towards the virus remains prevalent. “The stigmatising attitudes people reported were less prevalent than the stigma they attributed to others in their community. About two-thirds of the respondents perceived most people in their community to judge people with HIV negatively and to distance themselves socially from people with HIV,” the study found.  

Moukangwe says HIV-related stigma can result in patients defaulting on treatment. People who don’t want their status known in the community stay away from clinics that have specific queues for ARVs. Some take taxis to get to clinics far from their villages where no one knows them, but sometimes they don’t have money to take two or three taxis, explains Moukangwe. “Remember that being HIV positive is a huge thing, especially for people who are newly diagnosed.”

When an HIV patient stops taking ARVs, their viral load increases. This means that their immune system is weakened and they can pass on the virus. “If you regularly miss doses of your HIV treatment, there is a risk that the HIV in your body will become resistant to the medication and the drugs will no longer work, even when you do take them,” according to a report by Avert, an organisation that provides information on HIV and Aids. 

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Some health establishments still use specific green-coloured cards designed for people living with HIV who seek medical attention. Treatment Action Campaign national chairperson Sibongile Tshabalala says these cards automatically disclose a person’s status without their permission.

“Remember that in [the clinic’s] waiting area, there is not only one person. There are a lot of people. So everyone sitting in that row will see that you have a green card. That means you are HIV positive,” she says. “Remember, our Constitution says we are equal in the face of law, so we don’t have to be classified based on our HIV status.”   

The card is not the only way the HIV status of a patient is inadvertently revealed. Parents living with HIV battle with health practitioners who disclose the HIV status of one or both parents on a child’s Road to Health booklet, which is used to record development.

Tshabalala says she found herself in this predicament in 2011 when her HIV status was disclosed on her child’s booklet. “As much as I am open about my status, it doesn’t have to be written on my child’s card, because that’s not my child’s information. Now you are disclosing my status.” She had a heated discussion with her medical practitioner, who later understood her point. 

The parent is not the only person who has access to the child’s booklet. The child’s nanny or teacher also sees it. “Now the person can see that the mother is HIV positive. As much as we know that we have [programmes that prevent transmission] from mother to child … sometimes people are ill-informed. The child can be discriminated against as a result,” she adds. 

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Communities need to educate themselves to fight stigma, says Tshabalala. “For instance, now we have Covid-19. Everyone is eager to know what it is because it affects everyone. Although there is still stigma, everyone still wants to know what Covid-19 is.”

This enthusiasm should also be directed towards learning about HIV, Tshabalala says, because even today not everyone knows enough about the virus. 

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