Feature story |

Adolescents with HIV: Don’t let them slip away

Photograph by Phyu Sin
Fernanda Rick is a medical doctor from Brazil, who specializes in infectious diseases and has been working with MSF since 2014. She currently is the Medical Team Leader for MSF’s HIV project in Dawei, Tanintharyi region.

A joined effort is needed to address the special needs of this group
By Dr Fernanda Rick, MSF

HIV+ adolescents (defined by WHO as young people between 10-19 years of age) are a particularly vulnerable but often overlooked group in the HIV response – globally, regionally but also within our own MSF HIV cohorts. In Myanmar, adolescents make up around 5% 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.

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% of our adult patients are on second-line medication, the percentage climbs to 16% 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 also the second line does not seem to be as effective. Looking at the last viral load results of all tested adolescents (about 90% of the total adolescent cohort), we see that almost 20% of adolescent patients on ART still have a detectable viral load in their blood – an indication that suggests the treatment alone is not working.

During a peer group activity at MSF’s Thaketa Clinic in Yangon , HIV+ Adolescents expressed their feelings by painting pictures and writing letters in anticipation of World AIDS Day 2016. Here with MSFers Zarni and Phu Phu from Yangon Project.
During a peer group activity at MSF’s Thaketa Clinic in Yangon , HIV+ Adolescents expressed their feelings by painting pictures and writing letters in anticipation of World AIDS Day 2016. Here with MSFers Zarni and Phu Phu from Yangon Project.

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 are struggling in this period; oscillating between happiness and depression, confidence and self-doubt, romance and heart-break. For many HIV+ 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 they 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+. 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 has been born to HIV+ parents and many of them grow up as orphans. In a sample of 177 HIV+ adolescents aged 10-19 in our Dawei cohort, 67.4% report being orphans, having lost both parents (18,6%) or living in a one-parent household (48,8%). 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 have not been part of an ART programme when they were born and many have died since. Becoming a bread earner thus often becomes an early responsibility for their children and, in fact, almost 30% of the youth in our sample indicate not attending or not having finished school.

During a peer group activity at MSF’s Thaketa Clinic in Yangon , HIV+ Adolescents expressed their feelings by painting pictures and writing letters in anticipation of World AIDS Day 2016.
During a peer group activity at MSF’s Thaketa Clinic in Yangon , HIV+ Adolescents expressed their feelings by painting pictures and writing letters in anticipation of World AIDS Day 2016.

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. 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.

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+ adolescents need a supportive environment that understands them and enables them to adhere to their treatment. It needs 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; teachers that do not discriminate 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; 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, we still need to understand those challenges better that lead to possible barriers to ART adherence and higher failure rates in HIV+ 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 counselling 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 joined effort and we need to do this urgently to make sure to give this generation a future and not let them slip away.

During a peer group activity at MSF’s Thaketa Clinic in Yangon , HIV+ Adolescents expressed their feelings by painting pictures and writing letters in anticipation of World AIDS Day 2016.
During a peer group activity at MSF’s Thaketa Clinic in Yangon , HIV+ Adolescents expressed their feelings by painting pictures and writing letters in anticipation of World AIDS Day 2016.

Photographs by Yasmin Rabiyan


Notes:

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 organization provided ART to 34,877 patients in these projects, 1,807 of whom were between 10-19 years of age.

About the author: Fernanda Rick is a medical doctor from Brazil, who specializes in infectious diseases and has been working with MSF since 2014. She currently is the Medical Team Leader for MSF’s HIV project in Dawei, Tanintharyi region.

More: For HIV, only half the job is done
While 18.2 million people living with HIV are receiving antiretroviral treatment (ART), a further 18 million living with the disease are not. With 1.1 million HIV-related deaths, and 2.1 million new infections in 2015, the end of AIDS is not in sight.