IRIN Webspecial on World AIDS Day

AIDS threatens our very raison d'etre; our ability to live and our instinct to create life. Little wonder, therefore, that HIV and AIDS are so feared. As the articles in this IRIN World AIDS Day web special illustrate, fear is at the heart of much of the stigma and discrimination that surrounds HIV and AIDS: fear of death, fear of the unknown, fear of rejection, and, as Eric Nachibanga, an HIV-positive Zambian points out, "fear of helplessness". "Overcoming the stigma and the discrimination against people living with AIDS is one of the chief ways of being able to respond adequately to the (AIDS) pandemic," Stephen Lewis, the UN Secretary-General's Special Envoy on HIV/AIDS, argues in an exclusive interview. "Because the stigma and discrimination are paralysing, they prevent programmes from taking place, they prevent issues from being discussed openly, they prevent open talk of sexuality," says Lewis. The AIDS epidemic has reached different stages in Africa and Central Asia - the two regions featured in the articles that follow. In sub-Sahara Africa, the AIDS epidemic is in full throttle. UNAIDS estimates that 3.5 million more Africans became infected with HIV during 2002, a year in which an estimated 2.4 million others died of AIDS. Now famine is threatening to add to the epidemic's toll, particularly in southern and parts of eastern Africa, by further weakening and ultimately killing people whose immune systems are already compromised by HIV infection. By global standards, HIV prevalence in the five Central Asian countries featured in this special edition - the three former Soviet republics of Uzbekistan, Kyrgyzstan and Kazakhstan, along with Pakistan and Iran - remain relatively low. The total number of people living with HIV/AIDS in Central Asia is estimated to be about 90,000. However, the Centre for Disease Control and Prevention has forecast that by the year 2005 the number will rise to 1.65 million without concerted efforts to target interventions. As economic and social conditions deteriorate in the former Soviet republics, the number of intravenous drug users is expected to grow at a rapid pace, fuelling HIV infection from contaminated needles. The epidemic is also growing exponentially through so-called "bridge" populations: sexually active drug users and drug injecting commercial sex workers. In Iran, well over 20,000 people are estimated to be HIV positive, the vast majority as a result of intravenous drug usage. Officially, neighbouring Pakistan has less than 2,000 reported cases of HIV. But the actual number of HIV-positive people is thought to be closer to 80,000. Widespread HIV infection throughout all sections of society is likely to follow in Central Asia, just as it has elsewhere in the world, if the situation remains unchecked. Central Asia and sub-Saharan Africa may be at different stages of the AIDS epidemic, but people's responses to AIDS-related stigma and discrimination are similar in both regions. Mohammad, a tailor in Lahore, Pakistan, and Winnie, a widow from rural Swaziland both know how it feels to be shunned by their families and neighbours. Qadir Maqsodov, Brett Anderson-Terry, and Noe Sebisaba, HIV-positive activists in Uzbekistan, South Africa and Tanzania respectively, have experienced similar challenges, heartaches and triumphs as a result of being open about being HIV positive. The prejudice experienced by these and other HIV-positive pioneers has made others think twice about being open about being HIV positive. Many of the HIV-positive people interviewed for this edition did not want to be identified. One, a Zambian university student, remains silent about being HIV positive because she does not want to be pitied. "I would prefer to be sent to the village to die, and people would believe it was witchcraft." At least these people know they are HIV positive. Last year, UNAIDS Executive Director Peter Piot estimated that about 99 per cent of people infected with HIV in sub-Saharan Africa were unaware of their HIV status. In Zambia, where AIDS emerged almost two decades ago, still only six percent of the population has tested for HIV. HIV counsellor Justina Bwalya believes that many people avoid finding out their HIV status in order to remain in a "comfort zone" that allows them to believe that they are unaffected. Incentives for people to find out and to accept their HIV status are distinctly lacking in the countries featured in this edition. And yet their governments have backed measures designed to break the vicious cycle of stigma, discrimination and denial that fuels the AIDS epidemic. For example, the Declaration of the July 2001 UN General Assembly's Special Session (UNGASS) on HIV/AIDS commits UN member governments to providing care, support and treatment for those affected by HIV and AIDS. Much of the groundwork outlined in the Declaration is supposed to have been completed by 2003. But as the following articles illustrate, much still has to be done before those at the sharp end of the AIDS epidemic realise the benefits of these commitments. Even where progressive and anti-discriminatory legislation exist, their application is often flawed, as this edition's article on labour practices in South Africa illustrates. Meanwhile, health care – or the lack of it - can be the source of, rather than the panacea for the kind of stigma and discrimination that drives HIV and those living with it underground. "Patients in the advance stages of AIDS are told to go home," says Agnes Kunene, a nurse in the article on stigma and discrimination in Swaziland. "There is nothing we can do for them, so it is up to the families to provide care." Both the UNGASS Declaration, as well as the African Consensus and Plan of Action on HIV/AIDS agreed to by African heads of state in Abuja, Nigeria, in April 2001, call on national leaders to act as role models. However, former Zambian president Kenneth Kaunda remains one of the few statesmen in the world to have openly taken an HIV test and publicised the result. Like the people they govern, most leaders choose instead to keep quiet about the impact HIV and AIDS are having on their own lives.