Adolescents living with HIV are one of the most vulnerable but often overlooked group in the HIV response. Dr Fernanda Rick, a medical doctor from Brazil, who specialises in infectious diseases, talks about her work in Doctors Without Borders/Médecins Sans Frontières’ MSF’s HIV project in Dawei, Myanmar, and why a joint effort is needed to give this generation a future.
In Myanmar adolescents - young people between 10-19 years of age - make up around 5% of our total HIV patients. Falling into the gap between child and adulthood, adolescents have distinct needs and face a unique set of challenges when it comes to HIV, both in prevention and treatment.
In our project in Myanmar, we are seeing a concerning picture. Adolescent patients are almost three times more likely to fail on first-line anti-retroviral treatment (ART) than their adult counterparts and will need to be switched to more potent drugs (second line ART).
This is particularly tragic, as adolescents actually start treatment in better health and achieve higher white blood cell counts (CD4 values) once they are on therapy compared to our adult patients. But what is even more worrying is the fact that the second line does not seem to be as effective on adolescents, with almost one in five still having a detectable viral load in their blood – an indication that suggests the treatment alone is not working.
Social and Environmental Issuesp
While we can’t confirm exactly what the reasons are for the high failure, it is something I have also seen in HIV projects in contexts other than Myanmar. Likely, it is a tragic combination of factors unique to young adulthood in general and social and environmental factors such as stigma.
Indeed, most of our young patients do not dare to disclose their status to anyone outside their family, not even their closest friends, out of shame. They are often scared they will be turned away if people know about their positive status. They also suffer from the “rules” (a most-hated word in a teenager’s vocabulary), that come with being HIV positive. The routine of having to regularly do something like take medication, and do so unnoticed by your peers, is particularly challenging.
Another consideration is the fact the majority of our young patients have been born to HIV-positive parents and many grow up as orphans, having lost both parents or living in a one-parent household. Growing up in orphanages or with other relatives, often a grandparent, doesn’t make it easier for adolescents undergoing a whirlwind of emotions, physical and psychological changes, to deal with their HIV infection. Growing up with a chronic life-threatening disease, kids need to understand why they need to take their drugs rigorously: It is key to their adherence to treatment.
Sexual education is another major issue. In Myanmar, like in many other societies, talking about sex is a cultural taboo. So it is already difficult for young people to learn about the joys, risks and responsibilities that come with having an active sexual life. But it becomes even more difficult to navigate when growing up without parents or when the main adult to ask and confide in is two generations removed.
A Supportive Environment
The list of challenges goes on and on. The bottom line, however, and something that we all as HIV care providers but also as caregivers, parents, teachers and human beings should take to heart is that HIV-positive adolescents need a supportive environment – one that understands them and enables them to stick to their treatment. They need a specially tailored model of care that allows them to be normal teenagers. This includes having HIV counsellors and other educators that “speak their language,” do not shy away from including sexual education in their interactions and who take our young patients seriously. It is also important to have teachers that do not discriminate against kids when they disclose their status and allow them to take their pills during school hours. And of course, families and communities that understand ways of transmission and prevention, rather than shunning away from eating from the same plate or borrowing their clothes.
In MSF, while there is still more work to do, we have taken the first steps to better care for this unique group of patients. This includes research into our existing cohort, as well as closer monitoring of virological outcomes; better-adapted counselling; an increase in peer-support activities; as well as targeted outreach in testing and health education are next steps. However, we need to make this a joint effort, and we need to do this urgently if we are to give this generation a future and not let them slip away.
MSF has been providing antiretroviral treatment (ART) in Myanmar since 2003 and currently runs HIV/TB projects in Yangon, Shan and Kachin States as well as in the Tanintharyi region. By September 2016, the organisation provided ART to 34,877 patients in these projects, 1,807 of whom were between 10-19 years of age.