He didn’t show up for my appointment yet again; he is one of the patients that I often think about. We first met in January, he came to see me in clinic wanting to reinitiate his ARVs (antiretrovirals, drugs which suppress HIV in the body). He is 13, but looks about 11 and came with his older brother who is 15, and looks about 13. The story was that he had recently moved and ‘forgot’ to collect his pills for the last 4 months. The trouble is that if you miss doses or start and stop then the ARVs don’t do a very good job of suppressing the virus, resistant strains can emerge and then the drugs don’t work. That is why adherence is such an important issue. If you run out of effective drugs as a teenager then what will you take for the next 50 years of your life? After adherence counselling, we did restart, then he missed some of his follow up, skipped a few weeks of meds, and the next time I checked the levels of virus in the blood, they were still high.
Remember life as a 13 year old? Stresses with school, family, friends, relationships and identity challenges. Try dealing with that alongside living with a chronic illness and remembering to take your medication every day. These challenges are also faced at home by young people living with diabetes, asthma or inflammatory bowel disease and the teenage years often end up being a period of suboptimal treatment. Add to that issues around disclosure, sexual relationships and family dynamics which can be challenging to negotiate. Social support is critical to aid teenagers in managing their own illness but many of our positive teenagers are living in fragmented families, many having lost their mother to HIV. When we first met, his Mum was an inpatient in our nearest psychiatric unit 6 hours away. She is home now and does care for him and offers support. But she is still unwell and can’t be relied upon to remind him about medication. I feel a bit helpless sometimes when I think of this boy and compare him to others at his age. He is not alone, we have a group of teenage patients, some of who come in and out of hospital often with issues related to adherence and complications from their uncontrolled infection.
Most of these teenagers got their infection via vertical transmission (from their mother). Fortunately, rates of paediatric HIV are falling in South Africa due to a public health approach to preventing mother to child transmission since 2002. All pregnant women are tested and if positive they are started on ARVs immediately regardless of how far progressed their infection is. In 2010 30.2% of pregnant women who attended public sector health care facilities were positive. HIV is implicated in about 70% of maternal deaths and 50% of under-5 deaths in South Africa so the stakes are high. If you lose a mother then the risk of death for that baby shoots up especially in the first year. The baby is also given treatment and then has a series of blood tests to check their status over the next months. In theory transmission is preventable in all but a few unlucky cases. Sadly we still have newly diagnosed children, often in cases where the mother has not managed to engage well with antenatal care or hasn’t been adherent to her medication. 15 years ago though these systems weren’t well established which explains the cohort of infected teenagers that we look after. We also have a wave of newly infected teenagers who have contracted the virus through sexual transmission. It breaks my heart to see a 15 year old girl not only coping with a teenage pregnancy but also a new diagnosis of HIV. Rates of new HIV infections in young women 15-24 years are four times higher than men of the same age and this age group accounts for a quarter of all new infections.
There are many people trying to support and engage these young people. Some of our clinics have teenage support groups to try and help. A local charity also does positive living work with teenagers, focusing not just on health care but also life skills, relationships and even just enabling fun activities to help them feel like normal kids. This charity has over 8000 orphans on the books from our district hospital area alone.
What happened next with my patient? One of the nurses managed to track him down that day and bring him into clinic and we found out a bit more about what is going on. The psychologist and social worker are now on board too. I’m just hoping that if we keep on plugging away then we might start to make some progress…