"Ifour 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 tothe drugs. They?re ineffective. So, you just think 10 years down the line whatit could be, the scenario could be."
Resistancemeans the drugs, known as anti-retrovirals, or ARVs, are no longer helpingprevent HIV from reproducing and that the immune system is very vulnerable toopportunistic infections. Some medical
Researchers say a person can build upresistance to AIDS drugs in just two years, requiring a change in medication.But there are only so many drugs available with which to make differentcombinations.
SisterMary says some of the HIV-positive children at Nyumbani are on second or eventhird-line drugs because they?ve built up a resistance to their initial treatment.
"Iam not a scientist," she says. "I am a mother, caring for children. These are my childrenand I want the best for them."
SisterMary carries on the work of Nyumbani?s founder, Father Angelo D?Agostino, aJesuit priest, surgeon and psychiatrist, who died in late 2006 at age 80.Nyumbani cares for thousands of children through its home, village andcommunity programs and many of those children are on anti-retrovirals.
"Thechildren in Nyumbani home," she says, "were abandoned either because they were left on theside of the street or in a hospital after the mother delivered or at the policestation or some Good Samaritan realize the parent had died and there was a sickchild there. So, they?re abandoned in the strict sense. The other form ofabandonment: abandonment through rejection. In other words when the parentsdied the extended family just disappeared."
Sheoften blames stigma and discrimination for a family?s refusal to care for anHIV-infected child.
Tohelp save other children from the fate of Sammy, Sister Mary says Nyumbanineeds a genetic analyzer. She says it could identify which drugs would or wouldnot be effective in treating a particular child.
"Itshows up whether resistance has developed to the different ARVs," she said. "Now, it?scrucial to know if resistance is developing because that?s a warning sign abouttreatment failure. Ideally, before you ever go on ARVs you should have aresistance 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."
Buta genetic analyzer is expensive - "Over$50,000. Would anybody like to give me a gift?" she laughs.
Andeach test, she says, costs about $260. Sister Mary Owens is calling onpharmaceutical companies to make a greater variety of pediatric AIDS drugs todeal with the growing drug resistance she?s seeing.
Anotherorganization that operates many children?s AIDS programs in Africa agrees moremust be done to make ARVs available. The Elizabeth Glaser Foundation says evenwhen pediatric AIDS drugs are in good supply, it can be a challenge to makesure children get them. It says this is especially true in remote areas, whereit?s difficult to diagnose infants and children with HIV, or where doctors arereluctant to treat HIV positive children because of a lack of training.
Both Nyumbani and the Glaser Foundation get much oftheir funding for AIDS drugs from PEPFAR, the President?s Emergency Plan forAIDS Relief.