Anti-retroviral medicine (ARVs) to treat HIV only became available in most parts of Africa in the late 90s and early 2000s. Before that time, most children born with HIV did not survive past 2 years old. We are now beginning to reach a time when the first group of children born with HIV is surviving until adolescence, and unlike their parents and other people who were infected horizontally, this group of HIV patients has a new set of special needs.
These needs include psychosocial support that focuses on the implications of having HIV from birth and what a lifetime of having HIV looks like psychologically. These issues include living in constant fear of being found out by peers, resentment and anger towards their parents, wondering if they will be able to live a normal life and have a family, treatment fatigue, as well as feeling powerless, hopeless, depressed, and in extreme cases, suicidal.
Being a teenager is hard no matter where you are in the world. Imagine, on top of the hormones, the awkwardness of adolescence, the peer pressure, to also have to be dealing with the fact that you have HIV?
During my time in Malawi, I have already heard of a number of teenagers who have seriously contemplated suicide to the point where they had a plan, a date, and were ready to carry it out. Luckily, they had the resources available to them to reach out to someone, usually a doctor or social worker, who was able to provide them support. But for all of the stories of teens that did get that support, imagine all of the other teens are out there who do not have access to doctors or social workers that they can talk to.
The way that HIV education is taught in schools and by NGOs puts a lot of emphasis on the fact that it is a sexually transmitted infection. While most lessons will gloss over other forms of transmission, they focus most on the sexual transmission because it tends to be the most prevalent way it is transmitted in Africa. While many infections do happen sexually, this can be socially problematic for teenagers who were born with the virus because if or when their peers discover their status, the automatic assumption is that these adolescents got HIV because they are promiscuous, not that they were born with it. These assumptions cause these teens to be alienated by their peers and ridiculed, scorned, made fun of, and harassed mentally, emotionally and sometimes even physically. So, many teens live in constant fear that their friends will find out their status, doing things like hiding in bathroom stalls to take their ARVs.
When we reach adolescence we begin to want to explore our sexuality and relationships. Many times with HIV positive teens, this means that the couples will be discordant, meaning that one person has HIV and the other does not. When you like someone or you start dating them, you very rarely tell them all of your deepest darkest secrets up front, sometimes you never share them at all. So imagine being a teenager and someone is interested in you and it’s your first relationship and it’s exciting, the last thing you are going to want to do is share with that person that you have HIV. Not only is there the fear that they will leave you, but also that they might tell other people.
The first wave of the vertically infected group is now getting to the age where they might be thinking about having children not too far down the line. Obviously, getting pregnant requires not using contraceptives, which in a discordant couple means the chance of transmission during intercourse. While the recent study, HPTN 052 funded by NIH, was released showing that proper adherence to ARVs actually reduces the sexual transmission of HIV to less than a few percent, this is still a legitimate fear, for both the HIV positive person who does not want to infect their partner, and the person who is potentially putting themselves at risk of getting HIV. There is also the concern of passing it on to your child, which is probably magnified in people who were born with HIV, even if they follow the effective PPTCT (prevention of parent-to-child transmission) measures.
All of these issues are emotionally and psychologically taxing, especially on an adolescent who is only beginning to learn how to deal with complex emotions. These feelings of insecurity, confusion, isolation and fear can lead to depression, anxiety, and suicidal thoughts. According to statistics released by Professor Lourens Schlebusch of the Department of Behavioural Medicine at the Nelson R. Mandela School of Medicine, University of KwaZulu-Natal, “suicide in patients with life-threatening diseases is significant. HIV/AIDS patients have a 36 times higher suicide risk as a group than the risk found in the normal population.” Psychological support is not something easily obtained in most countries in sub-Saharan Africa, and especially not in the rural areas. In addition, there are even fewer people trained specifically to deal with adolescents and even less with adolescents who have HIV. So, how do we support these teens? This will be an ongoing discussion.