July 26, 2016
Written by Sara Bowsky
This post originally appeared on Health Policy Plus.
Youth living with HIV were in full force at AIDS2016 and they had something to say. In 2000, the lone voice for children, 12-year-old Nkosi Johnson, made his plea to attendees in Durban just one year before his death. “Care for us and accept us—we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else—don’t be afraid of us—we are all the same!”
We know the history of treatment in Africa—it got a rocky start. Whether from a lack of creativity and boldness, or a risk-averse body of decisionmakers, there was initial hesitancy. First, they said it couldn’t be done. It was too complex, the behaviors couldn’t be changed. Infrastructure was too weak. Then PEPFAR came along, as well as the Global Fund to Fight AIDS, Tuberculosis and Malaria. We finally saw the advent of treatment for adults and pregnant women, not just in South Africa but across many of the countries hardest hit by HIV and AIDS.
As researchers, policymakers, and donors set their priorities to scale up HIV treatment globally, a massive gap in the response became evident. Children and youth were largely omitted from the treatment picture, with the overarching rationale that young people would be addressed later, that it was too complicated or expensive for now. Despite the efforts of pediatric and youth allies to advocate for inclusion of children in the HIV response, they remained neglected. Families suffered incredible losses as parents buried their children and surviving siblings were left on their own. Mothers did all they could to save their children, with some splitting their daily doses of antiretroviral therapy to provide an amount that might prevent their child from dying. Even within our miraculous PMTCT (prevention of mother-to-child transmission) programming, the struggle for inclusion of an indicator that would track a child’s serostatus lasted far too long.
And look where we are now. We’ve seen increased attention to children and young people living with HIV, from global initiatives to advances in treatment regimens and the ability of nurses to initiate and manage treatment. Despite these advances, we must not only double our efforts, but couple those efforts with direct input from youth as active partners in the response. To reach the 90-90-90 treatment targets, it is estimated that the number of adolescents and young adults ages 15–25 receiving treatment may need to quadruple from 2014–2020.