Doctor Fernanda Rick specializes in infectious diseases and has worked with Doctors Without Borders/Médecins Sans Frontières (MSF) since 2014. Here she writes from Dawei, in Myanmar's Tanintharyi region, where she is medical team leader for MSF’s HIV project.
HIV positive adolescents (defined by the WHO as young people between 10 and 19 years of age) are a particularly vulnerable but often overlooked group in the HIV response—globally, regionally, but also within MSF’s own HIV cohorts. In Myanmar, adolescents make up around 5 percent of our total HIV cohort of nearly 35,000 people.
Falling into the gap between child- and adulthood, this group has distinct needs and faces a unique set of challenges when it comes to HIV, both in prevention and treatment. This is complicated, as it requires particular attention and is thus often neglected in HIV programming, with harrowing results. The number of new infections and AIDS-related deaths in this group are on the rise in the Asia and Pacific region and, according to the recently released report “Get on the Fast-Track—The life-cycle approach to HIV by UNAIDS, adolescents living with HIV have the highest rates of poor medication adherence and treatment failure.
Adolescents at Risk
A review of our HIV cohorts in Myanmar indicates a similarly concerning picture: our 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). While only about 6 percent of our adult patients are on second-line medication, the percentage climbs to 16 percent in the adolescent group. This is particularly tragic, as preliminary research indicates that adolescents actually start treatment in better health and achieve higher 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 for adolescents. Looking at the last viral load results of all tested adolescents (about 90 percent of the total adolescent cohort), we see that almost one in three adolescent patients on second-line ART (28 percent) still have a detectable viral load in their blood—an indication that suggests the treatment alone is not working.
We can’t put our fingers on exactly what the reasons are for the high failure rates in this specific group of patients, but it is something we are also seeing in HIV projects in contexts other than Myanmar. Likely, it is a tragic combination of determinants unique to young adulthood in general and social and environmental factors, including context-related stigma in particular.
Young people all over the world struggle in this period, oscillating between happiness and depression, confidence and self-doubt, romance and heartbreak. For many HIV positive adolescents this rollercoaster ride includes additional loops. Most of our young patients do not dare to disclose their status to anyone outside their family, not even their closest friends. They are often ashamed and scared that their loved ones would turn away if they knew about their infection. They 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 in a time of your life when you have a million other things on your mind) does pose a challenge to ART adherence.
There are also a number of social and cultural components that make adolescents vulnerable to treatment failure. The majority of our young patients were born to HIV positive parents and many of them grow up as orphans. In a sample of 177 HIV positive adolescents aged 10 to 19 in our Dawei cohort, 67.4 percent report being orphans, having lost both parents (18.6 percent) or living in a one-parent household (48.8 percent).
In Myanmar, ART only became available in the public service a bit more than 10 years ago, but even then, access remained extremely limited. So the parents of the kids we are treating today likely were not part of an ART program when they were born and many have died since. Becoming a breadwinner thus often becomes an early responsibility for the children and, in fact, almost 30 percent of the youth in our sample indicate not attending or not having finished school.
Growing up in orphanages or with other relatives, often a grandparent, doesn’t make it easier for adolescents undergoing a whirlwind of emotions and physical and psychological changes to deal with their HIV infection. Disclosure of their HIV status to them is a sensitive issue, yet a highly important one. Growing up with a chronic life-threatening disease, kids need to understand why they need to take their drugs rigorously: It is key to make them adherent.
Sexual education is another major issue, as adolescence is also a time when sexuality awakens. Yet 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.
Teaching and Support
The list of challenges goes on and on. The bottom line, however, and something that we all as HIV care providers and caregivers, parents, teachers, and human beings should take to heart is that HIV positive adolescents need a supportive and understanding environment that enables them to adhere to their treatment. They need a specially tailored model of care that allows them to be normal teenagers. This includes having HIV counselors 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. They need teachers that do not discriminate against kids when they disclose their status, but allow them to take their pills during school hours and pass messages of support and HIV education in their class rooms and families and communities that understand ways of transmission and prevention, rather than shunning adolescents from eating from the same plate or borrowing clothes.
In MSF, we still need a better understanding of the possible barriers to ART adherence and the challenges that cause higher failure rates in HIV positive adolescent patients. We have increased efforts in our HIV projects in Myanmar to better address and care for this unique group of patients. This includes research into our existing cohort, as well as closer monitoring of virological outcomes. Better-adapted counseling and an increase in peer-support activities, as well as targeted outreach in testing and health education, are possible next moves. However, as treatment providers, caregivers, and humans, we need to make this a combined effort and we need to do it urgently to make sure to give this generation a future and not let them slip away.
MSF has provided antiretroviral treatment in Myanmar since 2003 and currently runs HIV/tuberculosis projects in Yangon, Shan, and Kachin states, as well as in the Tanintharyi region. By September 2016, the organization provided ART to 34,877 patients in these projects, 1,807 of whom were between 10 and 19 years of age.