At the 19th International AIDS Conference in Washington, DC (AIDS 2012), there has been much talk about a ‘cure’ for HIV, an ‘AIDS free generation’ (in danger of being assumed as synonymous with the ‘cure’ narrative), plus the usual controversy around which particular key population has been ignored (this time, it was sex workers and injection drug users).
I’ve been following a series of presentations and discussions around adolescents living with HIV. This is not an especially new demographic (teens infected through sex have always been part of the HIV landscape). But it is growing, partly a result of the rapid rollout of effective antiretroviral treatments (ART) for infants and children, who are now surviving through adolescence and into adulthood.
One session last week included moving testimonies from two young people (who spoke anonymously) about the experience of growing up with HIV, from childhood through adolescence. Their testimonies highlight the challenges growing up with a virus requiring constant medication, difficult social negotiations, and critical personal strategies for coming to terms with an HIV infection, especially during adolescence. For both, not allowing HIV to control their lives is paramount, and although their social contexts were very different (one lives in Asia, the other North America), it was clear that with social and familial support, and personal hope, difficulties can be overcome. Their determination to normalise HIV – relegate it from something catastrophic to controllable –was inspiring. One said “a broken heart is sadder than HIV.”
It was a shame that, due to poor programming, these moving statements were followed by less interesting (and, given the context, perhaps inappropriate) presentations detailing ART side-effects in children, long term physical and psychological damage from being born with HIV, and high level policy making. This was whilst the young speakers were still present. Hmm. Closing minutes brought the focus back to them – the chair asked if they had questions for the panel of presenters. One asked about the likelihood of a cure. The response, from a paediatrician, was an apposite end to this particular event: “I say to my patients, you will be on medicine for the rest of your life – but I want it to be a really long life.”
For me, this session was a mixed bag. It illustrates perhaps the confused nature of policies and approaches to HIV in adolescents and young people. Are they children? Are they adults? How do we address gender inequalities? What information do they need? How can adolescents be supported as they become sexually active? (Which could be anywhere from 10 to 19).
Our priority must be to refine our approaches to this group, keeping them safe and empowered during this difficult transitional stage, and always bearing in mind the comment of Anthony Lake (UNICEF) from a recent report: “We invest so much in keeping children alive in the first decade of life. We must not lose them in the second.”
Ian, I couldnt agree more with you comment about the inappropriate content that followed the young people that spoke about their lives. Their honest insights into their daily lives were a stark reminder that personal experiences are so different and that adolescents living with HIV are not a homogenous group and that we need to start answering the questions that are most critical to their lives and not those that serve our personal interests..