The Custodians of Today and Tomorrow: Youth Deserve a Say in Their Treatment Journey
Sara Bowsky
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.
I was beyond heartened to see the number of youth living with HIV represented at the conference and to read the latest from the PARTNER study, which showed zero HIV transmission among adult discordant gay and straight couples (the median age in the study was 40–44). With viral loads suppressed by HIV treatment, the fear and loathing of any risk for viral transmission to partners will be lifted. Imagine what this news means for a young person living with HIV and gingerly moving from adolescence into adulthood. Will this help them navigate sex with new partners? Will the huge “tell or don’t tell” burden fall away? I would love to know. With the release of game-changing data, it is time for both HIV-positive and HIV-negative adolescents to be engaged in the dialogue that impacts them as they grow into adulthood.
As we strive to achieve universal treatment and epidemic control, and to roll out test-and-start strategies and differentiated care for HIV, we can’t lose sight of the many facets of the epidemic, the treatment journey, and its impacts on youth. A study presented at the conference by my colleague, Catherine Barker, shows that adolescents and young adults account for a disproportionate number of new infections in the 23 countries studied. People ages 15–24 accounted for 19 percent of the total population, but represented 31 percent of new infections as of 2014.
Children born with HIV and newly infected young people enter the treatment cascade—the sequential stages of care from initial diagnosis and engagement in care, to treatment monitoring, and to viral suppression. Along this cascade are children and youth who walk a very intimate journey. Their courage, whether in speaking with another newly diagnosed young person or presenting at the AIDS conference, is not only to be commended, but must be incorporated into our response. For too long we have listened to pleas from youth: to address stigma; to advance information on disclosure; to scale up treatment literacy; and to provide them with not only a voice, but with answers to their questions and policies that protect their health and livelihood, developed with them hand-in-hand.
It’s time to hear what youth have to say and to genuinely factor their perspective into clinical decision making and health policy planning, from the clinical level to provincial and national levels. Youth living with HIV since birth and those newly diagnosed as teenagers both possess experiences and perspectives that must be addressed. How many times have we heard about a young woman who does not remember when she was told that she had HIV, but who remembers when she realized what it meant? I recall working with a young woman from Lesotho who simply could not understand why she had HIV and lived, while her sister, five years older, did not survive. Why did she get treatment and her sister did not? There is a lot to answer for in the history of our response, and I know she is still navigating the “clinical cascade” as she moves into adulthood. More importantly, I know that she will ultimately be the one responsible for her own livelihood and will carry with her the answers to many of the questions we grapple with today. It is her voice that matters.
During a conference session this week, organized by Palladium and the USAID-funded Project SOAR, youth living with HIV joined some of the world’s leading clinicians and researchers on HIV treatment for children and adolescents to share evidence, experiences, and goals. A youth call to action was also released during the conference. “For too long, we young people have not been seen and have not been heard in a way that leads to change on a big scale! Our experiences, opinions and ideas have not influenced the people who make decisions on our behalf about our health and bodies.” This declaration also called for the “prioritization of health services that are appropriately pitched, equitable, non-discriminatory and effective to meet the needs of all children and youth.”
I staunchly support these remarkable young people. It’s time for us as researchers, clinical care providers, and policymakers to listen up and take note. These youth are not just the future; they are our experts today.
Sara Bowsky, BScN, RN, MPH, is Senior Pediatric HIV Specialist at Palladium and the Deputy Director for HIV, Health Policy Plus.
