BAMAKO, 14 October 2009 (IRIN) - Parents are supposed to outlive
their children, or so thought the grandmothers sitting in the
children's playroom at Gabriel Tour� 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.
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 Tour� 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 Traor�, 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 Traor� 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 Traor� 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.