HIV stigma: the last hurdle to an AIDS-free generation

The mid-eighties were some of the loneliest years for Kgosi Kebinatshwene Mosielele of Manyana, as he experienced the ugliest and brutal form of HIV stigma during the height of the HIV/AIDS pandemic. The first person with HIV had just been identified in Selibe Phikwe in 1985 and unfortunately for Mosielele, a handsome young man on top of his game and the envy of many of his peers, everyone in the mining town thought he (Mosielele) was this identified Mr. X, and he was spreading the virus.“Suddenly my social life was in shambles, the rumour mill went on overdrive and friends and colleagues shunned me,” he confessed to The Midweek Sun. The isolation forced him to seek transfer to Jwaneng but within a short while, the news that Mr. X of Phikwe had arrived in Jwaneng spread like wild fire. Three transfers later with the HIV rumours still plaguing him, Kgosi Mosielele said he began to believe the rumours and was even afraid to get tested to refute them. “Everywhere I went even children would point at me calling me Mr X.“I was scared to go to the hospital to get tested because I had started to believe I was positive,” he said. It was only when he went for a medical check up that he was forced to get an HIV test in order to study abroad, a move engineered to get him away from the toxic environment at work. “Even after my results revealed I was HIV negative, they couldn’t believe it at work and made me take another test!” Kgosi Mosielele shared his experience to a packed hall during the 7th Botswana International HIV Conference, held at the Gaborone International Conference Centre recently. The theme of the bi-annual conference was “Time to End it: Find, Treat and Prevent-The Last Mile.”Happily married, with two grown children, Kgosi Mosielele acknowledges that while the country has come a long way in fighting the stigma, it is still a plague that continues to follow communities, more than 30 years after the AIDS crisis emerged. Kennedy Mupeli, AVAC Fellow and Advocacy Officer, Centre for Youth of Hope (CEYOHO) concurs. Moderating a session that took an in-depth look at the experiences of people living with HIV, he pointed out that while medicine has advanced and some of the old stigmas have faded, the fear of catching something that never really goes away and that still can provoke a sense of blame remains. “One of the true miracles of the last 25 years is ARTs,” Mupeli said. “At the beginning, we didn’t have any decent therapies, and the ones we had were hard to take and had a lot of side effects. But in the last 10 to 15 years, we have seen very effective, well-tolerated drugs. If a person can get them and stay on them, they can look forward to a life expectancy that’s very similar to someone without HIV. Even better, science has also proved that taken properly, medication can make it even more difficult to transmit the virus through sex,” he stated. Unfortunately, according to Mupeli, morality often takes precedence over science. “I think that people attached it to behaviours they saw as wrong. And some of that still exists today. As such people a lot of times carry a load of guilt and responsibility which makes them afraid to disclose their status.” Activist and Treat All champion, Regina Gaolebe knows this personally.“The nature of the fear has changed because the landscape has changed,” she said.“In the 1980s and 1990s, there was a lot of fear because people didn’t know how it was transmitted and they were dying in droves. Now, people don’t think about HIV as a crisis, but they are still afraid of HIV-positive people. The stigma is still fully alive and it’s a huge driver for new infections.” The remaining stigma, she explained, is one that hinders people to disclose their status in relationships for fear of losing their partners. “Whenever I meet men who are potential boyfriends or husband, they literally run away as soon as I tell them I’m HIV positive,” she shared. Another part of the stigma is that people only get HIV due to careless behaviour and somehow deserve the disease. But Mompati Tamari (23) has lived with HIV since birth. “When you are HIV-positive, a lot of people automatically think you have been having random sex with all kinds of different people. You end up not having the confidence to talk about HIV,” Tamari said. At some point in his life Tamari quietly broke up with his girlfriend of two years because she was ready to stop using protection during an intimate session. “I knew I couldn’t do it but I also couldn’t disclose my status and so I left.” Within communities, some people living with HIV live in fear or at worst suffer the wrath of rejection from society. The only alternative is to keep one’s condition a secret and even shun certain services such as treatment. According to the World Health Organisation (WHO), HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS. From such practices, there are consequences. Unfortunately, they are wide-ranging as family, peers and the wider community shun some people, while others face poor treatment in healthcare and education settings, erosion of their human rights, and psychological damage. A summation of these limits access to HIV testing, treatment and other HIV services. “I don’t think that you can totally eliminate stigma,” another activist, diagnosed with HIV 20 years ago, Edwin Motse, said. “I think that it will always be an issue. But I think the way we overcome it is really getting to a place of being comfortable with ourselves.” Motse also expressed concern that the role of people living with HIV is not really visible in the current setting and they are not given a voice where it matters. “At the beginning of the pandemic, it was people who lived with the virus who made the greatest impact. This is the missing link. Beyond the great miles we have made medically, people need to hear real life stories and relate,” he said. According to Motse, “People don’t need to fear HIV, they need to know how it is transmitted, what puts them at risk and what reduces that risk. We have to make testing and treatment easier to access, and we need to make sure people are stable and healthy in wholesome ways.” Knowing first-hand how bad the misconceptions about HIV can get, Motse and other activists have made it their lives’ calling to do the advocacy work, dissolve those stigmas, and start honest conversations about the disease. They travel the country and use their social media platforms and community organisations to tell their stories and what they have overcome. By breaking down these barriers, they hope to open up discussion about HIV without the stigma attached to it.