10 years ago, when 56-year-old Sam Lufanana Kiyingi started volunteering at the Makerere University Joint AIDS Program (MJAP) supported ISS clinic in Mulago as a Peer Educator, HIV related stigma and discrimination were at their highest peak. Blatant judgment and condemnation was passed when someone mentioned that they were HIV positive. Despite that, Kiyingi chose the high road- to use his story and give hope to peers living with HIV. It has not been a smooth road. Kiyingi had to endure scorn and ridicule from his friends and relatives – ‘a man does not have to disclose his status to anyone,’ is something he hears often.
He begins each day with giving health education, something he has mastered. “I can give health education in my sleep,” he says. He then talks to clients who have challenges taking their treatment about the importance of taking their medication as prescribed by the doctor. “Taking drugs every day is not as easy as it seems,” he says. “Some people need extra support to be able to adhere to treatment,” Kiyingi adds.
He makes an effort to walk to clients’ homes sometimes under harsh weather to find out why they no longer come to the clinic for treatment. When he makes follow up calls to clients, sometimes they brush him off like someone they don’t know, especially if they are with people they have not disclosed to. “I understand why they do this. People are not so accepting when they know you are living with HIV. It takes a lot of bravery to live openly positively,” Kiyingi says.
Kiyingi was not always this brave. On the contrary, it was his teenage son that encouraged him to go for an HIV test in 2004 when he took ill with a fever that seemed incurable. He was unable to work because of this illness, was in and out of hospital and had lost a lot of weight. He had heard radio dramas and songs about HIV in the 90s and knew HIV was real but it never crossed his mind that he could be HIV positive. “When I was told I was HIV positive, my mind was blank. The only thing I could think about was the late Philly Lutaya’s song – Today it’s me. Tomorrow someone else.” Kiyingi says.
Through counseling and medication, Kiyingi found peace of mind and the strength he needed to start working again. He chose to study a short course on HIV counseling and use his skills and personal story to help people living with HIV overcome stigma and discrimination to be able to adhere to their treatment. “Stigma and discrimination are some of the reasons people do not want to come to the clinic for treatment. Sometimes this stigma is internal. But more often than not people openly make offensive statements towards people living with HIV. I tell the clients I interact with that whatever the situation, they need to focus on staying healthy and ignore the unpleasant comments,” Kiyingi says.
Kiyingi has devoted his life to fighting HIV related stigma and discrimination. He dreams of the day when all people living with HIV can confidently walk into a clinic the way people suffering from Malaria do and receive their treatment without fear of being judged or talked about.
“Ultimately, we all want to see an AIDS-Free generation. But this will not be achieved if people still shy away from HIV testing, care and treatment due to real or perceived stigma,” Kiyingi says.