Give a future for 950 Indian kids living with HIV

18 year old Sriram lives in the bustling town of Sankarankovil. He lost both of his parents to HIV as a child and was raised by his grandmother. With our support he is in his first year in a diploma course on automatics. He says he is enjoying the course and looks forward to being financially independent and able to look after his grandmother. He has been taking his ART regularly and is in good health. He shows us a tattoo - ‘amma’ meaning mother, with a crown on top.

We regularly send reports to update you on our work, but our reports are 'evaluative' and used for monitoring. This project works through networks of HIV positive people and their volunteers, our field staff, and a coordinator. Reporting is also a useful tool to keep management in the loop. In this report we reviewed 84 children with HIV under special follow-up.

Unsurprisingly, nearly all these children have unsatisfactory test results, which indicate that the treatment is not working optimally - some are under special follow-up for this reason alone. A few have not started or are refusing treatment, others are due a test or the result has not yet come. However, the vast majority have issues related to adherence to treatment.

Some of the adherence problem is due to low availability of paediatric dugs and real or perceived side effects. With others – the problem is that their parents are not themselves taking tablets regularly. But the main problem is that parents and guardians do not or cannot make treatment a top priority.

When studying children with very poor test results (a high viral load) we find that smaller children and older adolescents make up the majority and that low adherence is the main problem. This study showed that very few children who need a change of drug regimen have been given it.

So what is the take-away from this? We need a paradigm shift from “they won’t listen” to “so far we couldn’t convince them” - even more effort is needed. We need to look closer for reasons, for example the need to earn money for food. We need to ask the positive people’s networks to pressure the government services to provide more second line and paediatric doses.

Note: Photos are representative