Experiences fighting stigma parallel the situation for people affected by leprosy.
Following the death of her husband Christopher from AIDS in January 1987, Ugandan physiotherapist Noerine Kaleeba and 15 other people formed The AIDS Support Organization (TASO) to educate the public about HIV/AIDS and to fight the stigma and prejudice associated with the disease.
From small beginnings, TASO is now the largest indigenous NGO in Africa providing HIV/AIDS services to people on the continent. Its annual budget is close to US$25 million.
At the recent 17th International Leprosy Congress, Kaleeba shared with delegates some of the strategies that have proved effective in countering negative attitudes toward HIV/AIDS in Africa and how these might help in combating leprosy-related stigma.
"One very important action that we took in the AIDS movement, which has been taken up globally, was to mobilize political leadership. Political leadership is essential, especially when confronting a disease that carries stigma," she said. "I come from a country that is very lucky in that we had a leader, President Museveni, who took a very early stand in Uganda to be focused about the disease."
Political leadership is essential, especially when confronting a disease that carries stigma.
Another important step was the involvement of celebrities, which helped to give the movement a higher profile. Among the influential strategic partnerships that TASO struck up was one with Bono, the leader singer of the band U2.
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Then there were the "heroic efforts of people with HIV in standing up and giving the disease a human face and voice," she said. "My husband was on the TV and radio just before he died, sharing his experiences and appealing to others to try and avoid catching HIV."
This was not without consequences for his family. After Christopher's illness became public knowledge, there was a period of three months when the couple's children could not go to school. They were rejected by their peers because their father had AIDS, and endured the taunts of their classmates.
"Although there might be one person in a family affected by HIV, the stigma affects every member," she said.
Instead of suffering it in silence, Kaleeba's family chose to fight stigma out in the open. "We decided to use my husband's experience to mobilize others, seek out people with similar experiences, and form a support group. This is what led to the formation of TASO," she said.
She reserves particular praise for her father-inlaw. "He was the first man in Uganda to stand up and say (publicly), 'My son has died of AIDS.'"
For people affected by the disease who choose to confront stigma, it is essential that they have a support system, said Kaleeba. "No one can challenge and stand up against stigma unless they have support around them. In our experience, this came from families, people you work with, with fellow affected persons challenged by the disease."
She noted, however, that some families have also been the cause and perpetuators of stigma. She recalled meeting young men and women with HIV who would have liked to join the movement, and use their experiences to help others, but their loved ones said, "Don't bring shame to our family."
Other points raised by Kaleeba included the importance of "symbolism in activism." Hugging and shaking hands have a big impact in influencing public perceptions, she said.
So too does choice of language. "Very early, we rejected the term 'AIDS victim', as I am sure you reject the word 'leper'."
Language is also crucial in relation to media coverage. "The media has played a key role in addressing stigma in HIV/AIDS. What they promote goes to the public."
Stigma does not disappear completely, said Kaleeba. "But as long as we remain united, as long as we develop leadership of those affected directly, as long as we strike up meaningful, equal partnerships, we can go forward."