Parents are supposed to outlive their children, or so thought the grandmothers sitting in the children's playroom at Gabriel Touré hospital in Bamako, capital of Mali. They had all lost their children to AIDS-related illnesses, and met each other when they brought their HIV-positive grandchildren on hospital visits.
"I borrow, I beg - what else can I do? I am the only one willing to take care of him," said Mouta Tounkara, 61, speaking of her orphaned grandson who started HIV treatment in January 2008.
Aminata Soumaoro told IRIN that when her daughter died three months into the pregnancy, the newborn girl barely survived, but not her gravely ill father. "I did not want to care for this premature child, but it is easier now because she is grown."
She pointed to the 9-year-old girl. "I already lost my daughter; I do not want to lose her as well." Soumaoro used to travel between villages selling charcoal but had switched to agriculture because of poor sales.
Up to 60 percent of the children receiving HIV treatment at the hospital had lost one or both parents and were often shuttled among caretakers, said Anta Koita, one of two full-time paediatricians specializing in HIV care.
"She is not good with the child's treatment. The viral load [the amount of HIV in the bloodstream] is still detectable after six years of [antiretroviral] treatment," Koita told IRIN.
"The too-busy caretaker, often a grandmother, struggles to accept her new responsibility. And even if the parents are alive, if they are not infected with HIV, they do not know the gravity of the situation and the importance of helping their children with the medical treatments."
Only half of the 935 children taking antiretrovirals (ARVs) show up regularly at the hospital for medical care. More than 280 of the hospital's paediatric HIV patients are listed as "missing", and more than 100 children living with HIV have died since 2002. "But this is only when we get formal notification - it is hard to know how many children we are losing to AIDS," said Koita.
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Mali has 31 HIV treatment centres nationwide and 65 doctors trained to treat HIV paediatric patients. Paediatric HIV care became available in 2002, and since then Gabriel Touré hospital, the largest provider, has notified more than 3,000 families nationwide that their child is HIV positive.
Of the 1,428 youths and children who started taking ARVs, 462 have abandoned treatment, according to the Ministry of Health. "Some children are simply rejected by their families, kicked out when their HIV status is known - we do not even know where they are," said Koita.
When the father of an HIV-positive 9-year-old girl died, presumably of an AIDS-related illness, her paternal aunt ignored her. "The aunt refuses to come to the hospital to pick up her ARV treatment and for us to examine her," Koita told IRIN.
Instead, the deceased man's fourth wife - no relation to the child - agreed to come from her home 80km away so the child could continue treatment. "We had been married for one year before he died," the woman told IRIN. "I do not mind helping, but it costs me US$20 each time to come to the hospital."
Resistance to antiretroviral medication can develop if it is not taken regularly each day. "I was prepared to discontinue her treatment in September, and list her as a treatment abandonment case until the distant relative showed up. We will resume treatment, knowing the child may have developed drug resistance due to her interrupted care," said Koita.
A lack of HIV/AIDS education is another challenge to be met. Aminata Traoré, a paediatric HIV specialist in the Ministry of Health, told IRIN she had cared for a grandmother living with HIV who took her grandchild's HIV medication.
"We told her that she did not need to be on treatment, but she could not understand why the child was getting medication ... and not her. So she took the child's medication and is now resistant to that medication."
Coverage gains, treatments dropped
According to the UN, from 2004 to 2007 the number of people in Mali who started taking ARVs increased from 4 percent of those needing it to 41 percent, but Traoré said the jump in coverage masked problem of children abandoning treatment.
"There are too few health workers focused on paediatric treatment adherence. We need to increase health workers' technical capacity to treat paediatric HIV, because we may increase the number of children who start ARV treatment, but these numbers hide the children's continued suffering if they do not stick with treatment," she told IRIN.
"Paediatric patient management is quite recent and remains insufficient," noted Mali's 2008 application to the Global Fund to Fight AIDS, Tuberculosis and Malaria.
The Health Ministry's Traoré said the country was trying to boost the number of children who received and continued HIV treatment by increasing psychosocial support services for HIV-positive children and their families - with support from the UN Children's Fund (UNICEF) - shortening the distance patients had to travel for medication and care, and training general practitioners to care for paediatric HIV patients.
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions