Children orphaned by AIDS slipping through the cracks

Five year-old Fati could barely hold back her tears. This little girl who loves going to school had just been sent home. Like the other three kids turned away at the gates on the first day of classes, Fati is HIV-positive and has been orphaned by AIDS. Her head low, her uniform not quite hiding a stomach swollen from the antiretroviral (ARV) drugs she's been taking for a year, Fati, which is not her real name, clung to Kathryn Barrera, director of Mother's Welfare Group (MWG). "This is the worst thing that people could have done to her," said this woman who moved to Nigeria 30 years ago and whom the children call "Grandma". "When Fati came to us last year, we didn't think she'd make it. Her heart stopped several times. It's a miracle she's still alive and now they're sending her home from school because her belly's too big," she exclaimed, taking the little girl into her lap. On this day, MWG had sent 14 children to school, all of them orphaned by AIDS, but the four new students were turned away. "If they aren't allowed in, I'm pulling you all out this school," she told the children assembled in the living-room of the house, that she and her husband have set up in Kaduna, 200 km north of the capital Abuja, to take care of kids left vulnerable by AIDS. In 2001, seeing the plight of these children, MWG started taking in the first orphans. Now there are 26 in a house which is surrounded by greenery and filled with the voices and laughter of children. KIDS IN DANGER In Kaduna, a social worker speaking on condition of anonymity reported numerous cases of abuse against orphans, to the point of torture. Whether they have the virus or not, they are sometimes accused of witchcraft and held responsible for the deaths of their HIV-positive parents or are caught in the middle of inheritance squabbles. The risk to these children can be so great that leaving them in their family or community would amount to a death sentence, said the social worker. But other than a handful of public orphanages, only a few charitable or religious organisations look after the "children of AIDS" in Nigeria. And more often than not, these children have lived through very difficult family circumstances. "Some families keep the kids at home but neglect them until they die, acting as though they didn't see them," said Bukky Olumodeji, a 19 year-old who has worked for MWG for the past two years while waiting to continue her studies in nursing. In Nigeria, almost four million people are living with the virus, of which more than 300,000 are under 15 years of age, according to the United Nations. By the end of 2003, almost two million children had lost at least one parent due to AIDS-related illnesses. "A few years ago, nobody realised that a child could have the virus, even within the medical community," explained a local doctor on condition of anonymity. The doctor said it wasn't until the mid-nineties that a child was found HIV-positive in Kaduna. "At first we got one kid a month, then one per week. Now, a child tests positive almost every day." NO PAEDIATRIC ARVs IN KADUNA According to the State Action Committee Against AIDS (SACA), 230,000 people in Kaduna State were HIV-positive at the end of 2003. Less than a thousand is the "likely number of people" who have access to state-subsidised ARVs which cost 1,000 naira (about US $8) per month, said SACA's Andrew S. Yohanna. Paediatric ARVs cost 10 times more, about $80 per month. That amount is beyond the reach of most Nigerians, two thirds of whom live on less than a dollar a day, according to UN estimates. "Some families make huge sacrifices to get treatment for their HIV-positive children," said the local doctor. "They deprive themselves of their own medication to give them to their kids." According to SACA, paediatric ARVs are not yet available in Kaduna. Its drug budget was barely 50 million naira ($380,000), a paltry sum given the number of patients awaiting ARVs. At the MWG house, however, European-brought ARVs are free. NOT A MOMENT'S REST Two hours after having been sent home, Fati and the other three children were being led back to school by a combative Barrera. After a few minutes of forceful discussion, she managed to convince the embarrassed principal to accept them. But Barrera knew that her struggles were not over. "Every day, we have to wage battle over things like this," she said. "As soon as one problem is fixed, another comes along." Sure enough, a few hours later, a newborn was sent to the house from Kaduna's public hospital. "The mother died giving birth," said Bukky. "When the hospital discovered she was HIV-positive and told the husband that the baby likely was too, he took off, leaving his son." "The maternal grandmother stayed but she doesn't know what to do," she added, visibly shaken. For Barrera, it's clear that her organisation, which already receives support from partners such as the Dutch van Leer Foundation, the British Catholic Agency for Overseas Development and the Spanish Manos Unidas, will need to raise more money in order to deal with the growing number of children needing care. In addition to the kids in the house, MWG cares for 400 others. It also supports women's groups in the villages. SACA expects a programme for orphans and at-risk children to be implemented statewide in 2006 with funding from the World Bank. It would provide funding for communities and organizations on the ground to pay for the children's school fees, uniforms, and food. "Even if this programme does come about, 2006 is a long way off," says Barrera. "The kids are heading back to school now, and more and more are arriving here every day..."