Important note: Information in this article was accurate in 2009. The state of the art may have changed since the publication date.
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New Vision (Kampala) - October 4, 2009
Irene Nabusoba
ARV supplies in paediatric programmes are being underutilised. Dr Zainab Akol, the programme director National AIDS Control Programme in the Ministry of Health, says a large supply of paediatric antiretroviral medication donated by the Clinton Foundation could expire in the medical stores by March next year because of low demand.
Akol says less than a quarter of the 125,000 Ugandan children who need life-prolonging anti-retroviral treatment have no access to it because of stigma and inadequate sensitisation of parents. "This is disturbing. At least half the HIV-positive children should be on treatment," she says.
According to a report titled, 'A Logistical Challenge: Ensuring Access to ARVs for Kids,' by DELIVER, a US-funded project, ARV medicine can be accessed much more easily because of increased donor support, expanded availability of low cost drugs and the introduction of non-branded fixed-dose combinations (FDCs).
"Access to treatment for children with HIV has lagged far behind. Obstacles like fewer treatment options (particularly low cost generics), the need for additional training and support services and complex logistical considerations limit access to drugs by children," the report says.
The report also cautions that forecasting and procuring ARVs is complex because of the limited data, need for liquid formulations, need to re-dose children as they grow, need to switch older children from liquids to tablets and the rigour required to ensure appropriate dosages plus adherence."
Goretti Nakabugo, a counsellor, says due to stigma, parents have failed to take their children for treatment.
They believe that if their children start treatment, they will be shunned by the community and school-mates.
The problem is exacerbated by failure to determine the exact number of children who are in need of treatment. Children who present symptoms could be diagnosed with many other diseases, not just HIV.
"The social stigma presents many mothers from having their children tested," she says.
HIV testing is difficult for infants because they retain their mother's antibodies, on which most rapid tests are based until about 18 months of age. Infants need viral detection tests which are often only available at labs in large hospitals.
Dr Addy Kekitiinwa, the executive director, Baylor Paediatric Infectious disease Clinic at Mulago Hospital says out of the 330 antiretroviral therapy centres in Uganda, only 110 can provide services and most of these are located in urban centres.
The Baylor Centre is the first to provide a comprehensive package of HIV care and treatment services for children and adolescents.
This includes testing, treatment, counselling of children and their families and training professionals in the management of paediatric HIV.
Others include MildMay Centre in Lweza on Entebbe Road, Joint Clinical Research Centre with centres countrywide, Centre for Disease Control (CDC), Infectious Diseases Institute (IDI), plus many hospital-based centres countrywide.
Kekitiinwa says even then, antiretroviral therapy for children is complicated by the lack of appropriate antiretroviral drugs, few trained providers and the overwhelming number of adult with AIDS.
Eric Goosby, the US Ambassador and the newly appointed Global AIDS coordinator for the US President's Emergency Plan for AIDS Relief, says there are no tailor-made ARVs for children who have to make do with adult tablets.
"It is difficult for children to take pills. Yet the syrups are not available. It is critical that liquid syrups be made available," he says.
According to him, parents may not be picking the medicines because of the difficulty in administering the life-long doses.
HOW TO BREAK THE NEWS TO A CHILD
When should a child be told that he/she is suffering from HIV/AIDS? Florence Athieno Yawe, the founder of Love Ministries in Kawempe says "There is no fixed age. As a caretaker, you have to gauge the child's maturity in reasoning and whether they can understand their predicament."
It is against this background that Yawe is against parents taking HIV positive children to boarding school.
"Because I monitor the child's performance together with the health. Sometimes, it will necessitate that I discuss the child's condition with the teacher.
Unfortunately many teachers stigmatise these children.As a parent you may never know if the child is in boarding school," Yawe explains.
She says most of these children have not matured to declare their status. How will they take their medicine? This in the end affects drug adherence because they are in hiding.
Even so, Yawe says HIV positive children should eat a well balanced diet rich in fruits and silver fish (mukene). "Mukene especially helps build appetite," she says.
"ARVs come with side effects which kill appetite. Fruits like avocado, ripes, apples and vegetables help boost immunity. But all this care cannot be effective in a boarding school," she says.
Yawe says parents should be in constant touch with the doctors who decide when the child can start treatment.
"Some children stay healthy for a long time without taking ARVs," she says. However, Akol observes that many parents cannot face the idea of telling their children they have a potentially life-threatening illness and live in denial.
"It is very difficult for the parents to tell their infected children about their status. They keep postponing it," Akol says. "In the end, the children are not taken for treatment and their health deteriorates."
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