South Africa, which in 1998 accounted for nearly 1 in 10 of the new HIV infections estimated to have occurred worldwide, is the latest country in the ranks of those seeking to break through the shroud of stigma and shine a light on the human disaster of AIDS.
“For too long we have closed our eyes as a nation, hoping the truth was not so real,” South African Deputy President Thabo Mbeki told South Africans in October 1998. “For many years, we have allowed the human immunodeficiency virus to spread.. At times we did not know that we were burying people who had died from AIDS. At other times we knew, but chose to remain silent.
“[Now] we face the danger that half of our youth will not reach adulthood. Their education will be wasted,” Mbeki said. “The economy will shrink. There will be a large number of sick people whom the healthy will not be able to maintain. Our dreams as a people will be shattered.”
Appealing to South Africans to change “the way we live and how we love”, Mbeki called for abstinence, fidelity and condom use, and urged a caring, non-discriminatory attitude to those already infected with or affected by HIV. The speech was nationally televised, and the whole nation was urged to stop work to listen to it. Many private companies gave workers a day off. Flags flew at half mast on government buildings and religious leaders, youth, trade unionists, women’s organizations and business leaders committed themselves to the President’s Partnership Against AIDS.
Silence can continue to reign even when people with HIV are ill and dying. Because AIDS is just the name for a cluster of diseases that immunodeficient people develop, patients and their carers can choose to view the illness as just tuberculosis, or diarrhoea, or pneumonia. An example from southern Africa is telling. In one study of home-based care schemes, fewer than 1 in 10 people who were caring for HIV-infected patients at home acknowledged that their charges were suffering from AIDS. Patients themselves were only slightly more likely to acknowledge their status, and several told researchers that they had not disclosed their HIV-positivity to anyone, including the person caring for them. This self-imposed silence is hard on the patient. It can also be hard on the carers, particularly when they are children or adolescents. If they do not know that their parent or loved one is suffering from a fatal disease, they cannot prepare themselves for the death or acknowledge that it will inevitably come no matter how much effort they put into care. So carers risk compounding their feelings of grief and loss with feelings of failure.
In some countries, leaders have spoken out loudly, clearly and repeatedly about AIDS, have sought to demystify it, and have encouraged discussion about safe sex everywhere from the classroom to the boardroom. It is in such countries–of which Uganda is probably the best-known example in the developing worl–that most progress has been made not just in putting a brake on new infections but in ensuring the well-being of those people who are already living with the virus.