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Monday, June 27, 2016
- When 11-year-old Ronald Gathece was placed on antiretrovirals (ARVs) after being diagnosed HIV-positive, medical staff did not monitor his reaction to the treatment. But the side effects had been so bad that the young boy had contemplated suicide.
“I would vomit and itch over my whole body after taking the drugs,” the now 16-year-old Gathece remembers. “This was made worse by the fact that there was barely anything to eat in the house because my grandmother was jobless. I stopped taking the drugs altogether and wished I could die since this was not an illness I had brought upon myself.” Gathece had been born HIV-positive.
Fortunately, an HIV community outreach programme affiliated to the Kenya Network of Women with AIDS (KENWA) in Mathare slum, a collection of slums northwest of Nairobi where Gathece lives, intervened. They organisation convinced him to resume his antiretroviral treatment (ART).
“When we found him he told us that there had been no follow-up from the dispensary’s health workers to find out how he was fairing with the ARV prescription,” says Grace Njinju, a community worker representing KENWA in Mathare. “We convinced him to start treatment again and also enrolled him in our orphans and vulnerable children feeding programme.”
But that was five years ago. Gathece is now a teenager but there still remain many other HIV-positive children who are finding it difficult to adhere to ARVs due to poor surveillance and monitoring of the effects by health workers. It is a situation that medics say affects the progress children make with ART.
But a new surveillance kit may enable medical professionals to map out children experiencing difficulties with ART and trace side effects of ARVs. The kit, which was unveiled for the first time in East Africa in Nairobi in mid-August, outlines guidelines on how to monitor the quality, safety and efficacy of medicines.
“No medicine is guaranteed to be a 100 percent safe and so it is a double-edged sword,” says Pandit. “It is even worse among the paediatric population because globally very few clinical trials of medicine are conducted involving paediatrics. Most clinical trials are conducted in adults but when there is a relatively good safety profile that is when children are involved.”
One of the contents of the kit, says Pandit, is a medical form which health workers will be required to fill after interviewing patients on how they are responding to medication. The health workers, he adds, are trained to map patients on medication by consulting medical records at their working stations.
Pandit says the reports will be analysed and then finally sent to the international database, Vigibase, located at the World Health Organisation international drug monitoring centre in Sweden.
“This is a good initiative because we had problems handling ARV side effects among children,” says Florence Akinyi, an HIV/AIDS counsellor in Korogocho slum, Nairobi. “The mothers tell us the children would develop rashes and vomit after taking ARVs. Now we can be able to identify those drugs that are affecting the children and issue a fresh prescription.”
Inspired by the change that the drug safety surveillance process is expected to bring, paediatric institutions have joined the initiative to provide research on preventing mother-to-child transmission.
A two-year study is already being planned by the Elizabeth Glazier Pediatric AIDS Foundation, Kenya, and is expected to take place in South Africa, Zambia and Kenya. According to head of research at the foundation, Dr. John Ong’ech, the study will be tailored to meet the need for information on the cumulative long-term effects that ARVs have on children.
“This is not only an African concern but also a global concern,” says Ong’ech. “People have not really focused on what happens to the baby beyond preventing HIV transmission, and so there is no focus on how the drugs affect babies three years down the line.”