Overcoming stigma and discrimination

Veteran Ugandan AIDS activist Noerine Kaleeba is an angry woman. Anger propelled her into the frontline of HIV/AIDS activism in her country after her husband's death from HIV/AIDS. Sixteen years later Kaleeba is still angry, but her anger is now directed at the stigma and discrimination surrounding the disease.

Describing stigma as an "insurmountable mountain", Kaleeba warned that HIV/AIDS could not be defeated without first addressing the discriminatory attitudes that people affected by the disease encountered.

Kaleeba was speaking during the launch of the second edition of her acclaimed book ‘We Miss You All’ in Johannesburg this week.

The book tells the story of her husband's death from AIDS, and how this led her to form The AIDS Support Organisation (TASO). It also relates how her family coped with the pain and stigma that the disease brought into their lives.

Kaleeba launched the book with "mixed emotions". Expressing excitement and amazement at how "a tiny little bug" had turned the whole world into a global village, she was also disappointed that stigma continued to isolate people living with HIV/AIDS (PWAs).

"Why continue with stigma? How much do we have to lose, how many more people must die," Kaleeba said.

The key to addressing this problem, was the involvement of families, as they were as much the "face of AIDS" as HIV-positive people. While PWAs were doing admirable work in raising awareness about the disease, "how much more wonderful it would be if they were accompanied by their families, positive or not. How much stronger these voices of AIDS would be," she noted.

The second edition of the book, features personal testimonies from Kaleeba’s daughters about their father’s death and their mother’s decision to go public with her story.

"We told the children very early... and the biggest emotion they carried was the fear that Mommy could die. But it was easier for them, as it was out in the open and there was no secrecy," Kaleeba told PlusNews.

This led her to realise that trying to protect children by not providing them with information about the disease would hurt them even more.

Now working in Geneva, Switzerland as a community mobilisation adviser for UNAIDS, Kaleeba has come a long way since setting up TASO, with 16 other Ugandans affected by the disease.

But Kaleeba admitted to some frustration at the change in pace. "Working for TASO yielded immediate visible results. Someone would walk through the door confused and discouraged, but after receiving counselling and treatment, they would walk out a different person."

Nevertheless, her work at UNAIDS is also important. "Global policies need to be formulated with inputs from the realities of the situation [of HIV/AIDS]. If I removed my voice, it would be replaced by academics and the programmes wouldn't be the same," she added.

But Kaleeba is also a woman filled with hope. Uganda was previously seen as the "epicentre of the AIDS pandemic", but the reduction of HIV prevalence rates has been a hopeful sign.

The reduction in antiretroviral (ARV) drug prices had generated both "excitement and frustration" for families. "Families are now dealing with who should go on ARVs or not," Kaleeba said.

Providing treatment was no longer a debate and the media had to document the "practical reality" of ARV treatment at household level, she noted.

Despite the increasing momentum to provide treatment in Africa, the reality was that drug prices remained "far out of reach" for the majority of people living with HIV/AIDS.

"Those of you on the frontline of the epidemic, don’t despair and don’t lose your anger either. I know that one day we will overcome."