November 29, 2005
Millions of children with HIV/AIDS die every year because there are no appropriate diagnostic tools and pediatric antiretroviral (ARV) formulations that are affordable. 95% of these children live in poor countries. In the West, infections from mother to child can be effectively prevented, and ARV therapy gives children born with HIV an excellent chance of reaching adulthood. Yet in the developing world, the lack of treatment experience and the difficulties in providing ARVs to children mean that only a tiny proportion of those in need get treated. In Kenya, only one percent of the approximately 120,000 children with HIV receive ARVs. But despite the enormous challenges involved, MSF is intent on increasing the number of children in its programs. Situated on the outskirts of Kenya's capital Nairobi, Kibera is Africa's largest slum. An estimated 1.2 million people call this maze of corrugated tin shacks home.
Five-year-old Johanna is one of 200 kids who has to pay regular visits to the MSF clinic. Johanna was diagnosed with HIV and put on ARVs when she was two. She needs to come in for regular check-ups to have her opportunistic infections treated. Adherence to treatment is extremely important, and her mother has to make sure Johanna takes her daily doses correctly. But this is a real challenge for caregivers and health workers alike. Unlike adults, who can take a cocktail of medicines in one pill (known as a fixed-dose combination, or FDC), there are no adapted formulations for kids. This means there's no choice but to crush adult tablets. Each day, Johanna's mother wraps the pill in a little plastic bag and crushes it into a fine powder. "Crushing the pills is hard," she explains, "sometimes, you lose a bit of the powder, it's complicated and it's difficult to make sure that you have the right quantity of the medicine."
In a poor setting like Kibera, this simple method is the only way to obtain a child's dosage. Other options do exist but they are just as impractical. "Some of the drugs available come in syrup forms that taste horrible and children don't like taking them. If they are in powder form, they have to be mixed with water. This means that you need a source of clean water, and if you live somewhere like Kibera, it's very difficult," explains MSF medical coordinator, Dr. Rachel Thomas.
What makes Johanna's treatment even more complicated is that there are no clear guidelines or dosage charts for kids. As a child grows and gains weight, the dosage they need changes. "Adequate dosing is crucial," stresses Dr. Thomas. "Mistakes can have a severe impact: over-dosing can result in increased side effects and toxicity while under-dosing often leads to resistance." Developing resistance to a drug would mean that a child like Johanna would no longer respond to the first-line drugs. And since there are virtually no adapted second-line treatments for kids, Johanna would have no chance to survive in the longer term.
Yet for now, Johanna is doing well. She is one of the lucky few actually receiving treatment. In the small counselling room next door, MSF counsellor Aggrey Momo is faced with an even bigger challenge: mothers who bring very young babies for testing. There is no simple and affordable diagnostic tool to determine whether babies under 18 months are infected or not. The routine test detects antibodies to the virus, but since newborns acquire their mother's antibodies, it is impossible to determine whether they are really infected. "With the test kit we have here, we cannot confirm if babies are HIV positive or not. So we have to tell the mothers to wait until the baby is 18 months old to take the existing test." But many children cannot afford to wait that long. Half of those infected with HIV never reach their second birthday.
To change this, MSF has started treating children according to their clinical signs. Yet throughout the developing world, the lack of adequate diagnostic tools continues to prevent babies from getting treatment that could save their lives. "The people who can change this situation are governments and international agencies who are all based in rich countries," stresses Dr Thomas. "We need a greater commitment and response from pharmaceutical companies to design pediatric formulations that can be used in poor settings. We need affordable simple HIV tests that can diagnose children under 18 months. And this commitment needs to come very fast."
By Véronique Terrasse
© 2013 Doctors Without Borders/Médecins Sans Frontières (MSF)