Central Johannesburg is a side of town that most people try by all means to avoid, there are too many people walking about, too much noise with taxis continuously hooting and if you not careful you will get robbed of your belongings. But 37-year-old HIV positive Sarah Mokeona from Soweto makes monthly trips to the CBD to get her antiretroviral treatment (ART) from Zuzimpilo clinic a semi-private health facility. “I tried going to Zola but it took time and I feared they would fire me at work, it’s faster here,” says Mokeona. Not only is the service faster at Zuzimpilo Clinic but the facility also offers a greater degree of privacy that most public health facilities fail to do. While she pays R800 for her treatment, the risk of being seen by her neighbours while queuing is very minimal. According to the head of Zuzimpilo clinic, Dr Limakatso Lebina, HIV patients don’t want to be seen because HIV stigma is still there and Mokeona can attest to this, she continues to experience discrimination at work. “Things that people would say at work used to hurt me, people would look at me and make jokes about my status,” says a teary Mokeona. She also does not get support from her husband who she suspects is HIV positive too but has never confirmed it to her. “My husband does not tell me anything, so I’m thinking at work he takes the medication, because he does not tell me anything. When I look at him, he’s healthy, he’s fine, so I’m the one who’s HIV at home,” she says. Mokeona’s need for support is quite obvious, she easily opens up to anyone that’s willing to lend her a non-judgemental ear. It’s also visible she is troubled by her community’s negative perceptions of people living with HIV which is why she leaves behind all the free health facilities in Soweto and pays for medication at a semi private clinic.
“There are multiple layers of stigma, there is self-stigma, public stigma, internalised stigma and even professional stigma.”
Understanding the concept of stigmatization Psychiatrist, Dr Greg Jonsson says stigma should not be taken lightly as it has adverse effects on people living with HIV and Aids. “There are multiple layers of stigma, there is self-stigma, public stigma, internalised stigma and even professional stigma. So if we look at stigma it’s really about society’s perception of HIV. Often this has to do with contagiousness of the illness, fatality people getting very sick as a result of HIV, often this accompanied by responsibility and immorality,” says Dr Jonsson. He further explains another form of stigma that’s called internalised stigma. “Internalised stigma is very much where the patient with HIV assumes those negative effects of society and internalises them and has self-doubt and decreased self-worth. Internalised stigma has been associated with depression, non-adherence, substance abuse and I think those things we really got to address,” he explains. It does not end there though, as HIV positive patients are also stigmatised by health professionals that are supposed to look after them. “Many doctors, many health care workers often discriminate against people with HIV, mental illness, they often see them as irresponsible people and therefore give them less care. I mean a number of my colleagues, I’ve heard them refer to people with HIV as smelly and less worthy of treatment,” says Dr Jonsson.
Dealing with double stigma Dr Jonsson added that stigma can get quite worse when someone carries a burden of more than one illness, for instance when a patient has mental illness and HIV. One such person is Dr Jonsson’s patient, Fabien Nove-Josserand, who is gay and has lived with HIV since 1983, just months after it was discovered. In a months’ time he would have lived with HIV for 30 years. “Twenty- thirty years back being HIV positive was a death sentence, I was given two years to live, I was 22 years and my doctor said to me you’ll never see your 30th birthday, there is nothing we can do for you. Today it’s a different story, if anybody tells you if you got HIV, you going to die, then they should be shot themselves, today its considered a chronic illness,” says the outspoken Nove-Josserand. While Nove-Josserand speaks freely about his HIV status today, he too went through a tough time. “You go through a cycle of denial, depression, anger and eventually you get to acceptance, and sometimes you just cycle between denial, anger and depression. I went through all these in just about four hours, I went crazy until I reached a point where I say there is no point in me denying this. So if you gay with HIV and bipolar for example, its three sorts of stigmas, its three closet you have to come out of,” he says. Nove-Josserand has taken a no-nonsense approach when it comes to who he surrounds himself with. “I think HIV is a great eliminator because when somebody does not accept you because you have HIV then you eliminate that person out of your life, they have nothing to do in your life. I told my father in the same sentence, I am gay and I have HIV, can you imagine that’s a double whammy and he looked at me and said I don’t care you my son and I love you,” he says.
Effects of stigma
According Zuzimpilo clinic’s Dr Lebina, stigma does not only prevents people from testing it also prevents them from accessing treatment. “People don’t want to test, and they don’t want to know that they are HIV positive. Some say ‘it can’t happen to me because I have been stigmatising people living with HIV, if I find out I’m like them then that would be the worst discovery’,” she says.
The South African guidelines have changed people with a CD4 count below 350 can access treatment but Dr Lebina says people still access treatment late due to stigma.
“The majority of people that start treatment still have low CD4 counts, they still have CD4 counts below 200 not close to 350 which shows people are accessing treatment late, they are testing when they are already sick,” says Dr Lebina.
Government’s dodgy approach to stigma The government is also well aware of the challenges posed by stigma.
In its 2012-2016 National Strategic Plan (NSP) on HIV and Aids, the government outlined its plans to beat the disease by 2032. The plans include zero new HIV infections, zero Aids-related deaths and Zero stigma.
Gauteng MEC of Health Hope Papo agrees that stigma is proving to be a problem in the fight against HIV and Aids. “We are saying that stigmatising people with HIV is totally wrong, particularly from people who don’t even know their own status, those people are called Aids anonymous, they don’t know their status but they stigmatise people,” says Papo. But even with a HIV and Aids budget of R2 258 483 000 for the 2013/14 financial year little seems to be going towards fighting stigma.
Gauteng has estimated at 1.3 million people living with HIV and a total of 757,177 are on ARV’s.
“We are tackling stigma by emphasising that more people should come forward and get tested. In that way, if many of us are tested, the stigma goes because if many of us are testing, we get to know our status,” says Papo.
MEC Papo’s strategy to tackle stigma seems to be riding on only encouraging people to test. But how will people go and test if they fear finding out their HIV statuses due to stigma? Lack of will to tackle stigma HIV stigma does not grab the headlines, no one protests over it and remains a largely ignored critical issue.
The impact of stigma goes beyond individuals infected with HIV, it divides families, communities and most importantly prevents people from testing and accessing treatment. As a country that still has the highest number of infected people in the world with 6.4 million, perhaps it’s time HIV stigma became a central part of the country’ prevention strategies.
Sipho Stuurman is an International Womens Media Foundation (IWMF) Health Journalism Fellow.
– By Sipho Stuurman