Refugees fall through the cracks in free treatment

Colette [not her real name] had been in South Africa for about a year when she began suffering from high fevers and weight loss. Fleeing the violent political conflict in her native Democratic Republic of Congo, she had left her family behind to eke out an existence in the Johannesburg neighbourhood of Yeoville selling cheap trinkets from a pavement stand. Despite speaking no English, Colette was able to get assistance at the local clinic where staff are accustomed to dealing with the large numbers of French-speaking refugees who have made their homes in the area. After testing positive for HIV, the 52-year-old was referred to volunteer counsellor, Fulgence Kazadi, himself a Congolese refugee. Kazadi accompanied Colette to Hillbrow Hospital where her CD4 count was determined to be just 17, way below the 200 mark at which patients become eligible for antiretroviral (ARV) treatment. Colette did not yet have her refugee papers but a letter from Community AIDS Response (CARE), the non-governmental organisation that Kazadi works for, confirmed her asylum-seeker status and she was able to begin ARV treatment. It was explained to Colette that taking the treatment was a life-long commitment. Any hope she had had of returning home, where her chances of being able to continue treatment were slim, receded further away. "It was a very difficult decision," she said quietly, speaking through a translator. The reality is that not all refugees in South Africa who find themselves in Colette's position are given the opportunity to make such a decision. Since 1998, refugees have had the same rights to access health services as South African citizens, but according to Laurie Bruns, senior regional HIV/AIDS coordinator for UNHCR, the UN's refugee agency, many refugees are not able to exercise those rights. The first obstacle, Bruns says, is identifying needy members of a poorly monitored population that is dispersed throughout the country rather than contained in refugee camps. "We don't know where they are, so it's on their onus to approach us if they're in need of treatment," she said. A lack of awareness about the right to treatment, both among health care workers and refugees themselves, forms a second major hurdle. UNHCR partners with local organisations like CARE, that have a wide community reach, to inform refugees and service providers about refugee treatment rights. Dr Emmanuel Ngenzi Nyakarashi, who runs a walk-in legal advice center for refugees funded by the Anglican and Methodist Churches, believes that many HIV positive refugees are falling through the gaps. He says much more awareness-raising work needs to be done to combat a "a xenophobic tendency" among service providers who often fail to distinguish between refugees and illegal immigrants. "They see refugees as a threat, as competing for their jobs and women. Nobody sees them as a victim of circumstances," he said. "They may serve you or they may not." Bruns estimates that there are in fact only about 160,000 refugees in South Africa, although figures from the Department of Home Affairs record a backlog of a further 103,000 asylum seekers who's refugee status is still to be determined. It can take more than a year for that determination to be made, and without the intervention of organisations like CARE, HIV positive asylum seekers are refused treatment at government hospitals. Their only possibility of accessing ARV drugs is through faith-based organisations that do not distinguish between nationals and non-nationals, but they have limited capacity. In contrast to the popular misconception that refugees have helped fuel the HIV epidemic in South Africa, most come from countries with relatively low prevalence and become more vulnerable to infection upon arriving here. "The men often come alone and have multiple partners," explained Daniel Kalenga, another refugee counsellor with CARE. "For the women, often the only work they can do is sex work, and they feel they don't need to use condoms with men from their countries." In addition, refugees have generally had little exposure to HIV/AIDS information both in their home countries - and even in South Africa - as a result of language barriers. "South Africa started a long time ago talking about HIV and doing education," said Kalenga. "But for French speakers, they're not getting those messages." When Kazadi arrived in South Africa six years ago, he had never set eyes on a condom, despite the fact that back home his sister had died just a month after disclosing her HIV-positive status and being shunned by their parents as a result. "In Congo, it's very shameful to buy condoms, and you don't talk about sex," he said. Most refugees bring such attitudes with them to South Africa, making them not only more vulnerable to infection, but less likely to test and even less likely to disclose. Colette has not told her family back home about her HIV status and has only confided in three friends here. Her only source of support comes from a small group of HIV-positive refugees formed by Kalenga and Kazadi last year that meet regularly to share their problems and fears. Even with the drugs and a certain amount of emotional support, Colette is struggling. Like most refugees, she has little hope of finding formal employment. Some days she makes R20 ($3) from her pavement stall, other days nothing. "It's not enough to live on," she said. While refugees are eligible for HIV treatment, they do not qualify for the disability grants that many HIV-positive South Africans rely on to access adequate nutrition and help support their families. According to Bruns, the South African government is currently looking at the question of whether to extend social grants to refugees, but a decision is still some way off. Nyakarashi recalls that one of his clients, a Rwandan woman who contracted HIV during the genocide, was receiving ARV treatment but could not afford to raise her two children in South Africa. Knowing that she would probably not be able to access the drugs in Rwanda, she nevertheless made the decision to return. "She wanted to go home to be with her family and die in peace," he said.