Kids Today

I can’t find any mention of research on HIV+ children or on preventing mother-to-child transmission (PMTCT) in the program of the HIV Research Catalyst Forum.  But I did hear many women talk about how ARVs saved their children’s lives. They are calling for more clinical trials for HIV+ children, research on pediatric and adolescent HIV/AIDS, and studies on the long-term effects of ARVs taken during pregnancy on children who are HIV-negative.

Perhaps the greatest victory yet for HIV prevention has been the success in blocking mother to child transmission. Without intervention, there is a 15-30% chance that an HIV+ woman will pass the virus to her baby during pregnancy and delivery, and an additional 5-20% that her newborn will be infected from breast-feeding. But transmission can be reduced to less than 2% if an HIV+ woman takes ARVS during and after pregnancy, a short course of ARV treatment is given to the baby, and transmission  from breastfeeding is prevented by ARVs or by substituting formula.

Despite the tremendous success of PMTCT, old questions persist and new questions have arisen.  In many cases, research has been done but the findings aren’t easily accessible to the parents who need to know; in other cases, more research is needed.

• Preventing MTCT is not enough. Positive mothers of negative children want to know what long-term effects of perinatal ARV exposure might be, and their children need continuing medical monitoring and care to ensure their health.
• The HIVNET 012 trial in Uganda showed that a single dose of Nevirapine at the beginning of labor cut newborn infections by half. In resource poor areas, where PMTCT might be a short course of monotherapy like that, we need to know about any resulting drug resistance in mothers and in children who are positive.
• We need more research on simple, low-cost ways that HIV+ women can give their babies the benefits of breast-feeding without putting them at risk of seroconversion.
• Mothers of HIV+ children are asking for more pediatric and adolescent formulations of ARVs.  Clinical trials for children with HIV have always lagged far behind testing treatments for adults. At the HRCF Town Hall, one mother remembered splitting her pills to share them with her child.
• We need long-term research that looks at the outcomes achieved, in terms of infant serostatus, health, and ongoing connection to care of mother and baby, by those great OB providers who offer culturally appropriate counseling, education, and only then fully informed and consented HIV testing of pregnant women in high risk communities, and compares these outcomes with the results of coercive, routine HIV testing programs that privilege efficiency over engagement in care.

We also need the courageous mothers here the HRCF and beyond to bring their testimony about the importance of pediatric clinical trials back to their communities. Centuries of medical abuse and scientific exploitation of Black Americans have deterred many from entering clinical trials. HIV denialists, who spread the lie that HIV doesn’t exist and that AIDS is not a real disease, have been very successful in exploiting this distrust, particularly by misrepresenting pediatric clinical trials on HIV+ children at Incarnation Children’s Center in Washington Heights as hideous medical experiments. The mothers in Baltimore whose children’s lives were saved by pediatric clinical trials need to speak out and let their communities know: ethical medical research saves lives.