UNAIDS says children under the age of 15 account for one in six AIDS-related deaths around the world and one in seven new HIV infections. In some countries, AIDS is the leading cause of death for those under age five. While AIDS drugs formulated for children are available, the head of a Kenyan orphanage warns that resistance to them is growing. VOA's Joe De Capua reports.
Recently, at the Nyumbani orphanage in Nairobi, a 13-year-old boy named Sammy died. He was infected with HIV, the AIDS virus, and the drugs available to treat his disease no longer worked. The virus resisted all of them. To executive director Sister Mary Owens, Sammy's death was a warning sign.
"If our children develop resistance, well, first of all, we're back to square one," she says. "And it is a fatal disease again. But also, resistance builds up in our world to the drugs. They're ineffective. So, you just think 10 years down the line what it could be, the scenario could be."
Resistance means the drugs, known as anti-retrovirals, or ARVs, are no longer helping prevent HIV from reproducing and that the immune system is very vulnerable to opportunistic infections. Some medical researchers say a person can build up resistance to AIDS drugs in just two years, requiring a change in medication. But there are only so many drugs available with which to make different combinations.
Sister Mary says some of the HIV-positive children at Nyumbani are on second or even third-line drugs because they've built up a resistance to their initial treatment.
"I am not a scientist," she says. "I am a mother, caring for children. These are my children and I want the best for them."
Sister Mary carries on the work of Nyumbani's founder, Father Angelo D'Agostino, a Jesuit priest, surgeon and psychiatrist, who died in late 2006 at age 80. Nyumbani cares for thousands of children through its home, village and community programs and many of those children are on anti-retrovirals.
"The children in Nyumbani home," she says, "were abandoned either because they were left on the side of the street or in a hospital after the mother delivered or at the police station or some Good Samaritan realize the parent had died and there was a sick child there. So, they're abandoned in the strict sense. The other form of abandonment: abandonment through rejection. In other words when the parents died the extended family just disappeared."
She often blames stigma and discrimination for a family's refusal to care for an HIV-infected child.
To help save other children from the fate of Sammy, Sister Mary says Nyumbani needs a genetic analyzer. She says it could identify which drugs would or would not be effective in treating a particular child.
"It shows up whether resistance has developed to the different ARVs," she said. "Now, it's crucial to know if resistance is developing because that's a warning sign about treatment failure. Ideally, before you ever go on ARVs you should have a resistance test. Because now, you see, especially in the case of our children, they can inherit a resistant virus. This virus is very clever. You know that. It mutates."
But a genetic analyzer is expensive - "Over $50,000. Would anybody like to give me a gift?" she laughs.
And each test, she says, costs about $260. Sister Mary Owens is calling on pharmaceutical companies to make a greater variety of pediatric AIDS drugs to deal with the growing drug resistance she's seeing.
Another organization that operates many children's AIDS programs in Africa agrees more must be done to make ARVs available. The Elizabeth Glaser Foundation says even when pediatric AIDS drugs are in good supply, it can be a challenge to make sure children get them. It says this is especially true in remote areas, where it's difficult to diagnose infants and children with HIV, or where doctors are reluctant to treat HIV positive children because of a lack of training.
Both Nyumbani and the Glaser Foundation get much of their funding for AIDS drugs from PEPFAR, the President's Emergency Plan for AIDS Relief.