Better HIV treatment options for children: Jerop’s story

child-friendly HIV treatment

– By Jerop Limo, AYARHEP – Ambassador for Youth and Adolescent Reproductive Health Programme

If today I am an ambassador for youth and I can do my work with other young people, supporting them as they struggle with HIV and treatment, it is because of my journey. If I am ambassador today, it is not because I did everything as I should growing up with HIV, but because I fell into every trap. I struggled along the different stages, disclosure, treatment, stigma, and today I don’t want others to struggle alone. I can offer them my support, understanding, mentorship and experience.

Diagnosed with HIV at the age of 13, I was not told of my status.

I lost my mum when I was 9 years old. I was constantly sick, underweight, and with wounds all over my body. This is when I fell ill with tuberculosis and pneumonia. All of this prompted my father and the doctor to do some research to understand what was going on. I was diagnosed with HIV when I was 13 years old, but I was not told of my status. Therefore, I didn’t understand why I was taking medication and that I was going to have to take it for the rest of my life. Neither my doctor, nor my father explained to me how important it was to take my antiretrovirals every day at fixed hours. When my father was not around to make sure I took my treatment, I would skip it or hide it.

I was a good student at school and was called to go to a boarding school. My father felt I would not be able to manage my treatment alone and wanted to protect me. So he opted for a day school for me. In boarding school, you don’t have that privacy and are more likely to skip your treatment to avoid stigma as very quickly other children find out. For me it was better that I could keep my medicines at home and take them there.

As a teenager living with HIV, you have a lot of things to figure out.

I only found out I was positive at 15 years old as I eavesdropped on a discussion between my father and the doctor. Accepting myself took a long time. I faced the toughest years of my life. Like many young people, I had a lot of things to figure out as well as my HIV status. Now that I am older, I can understand better what my father and I went through. Treatment literacy is important for any parent raising a child who is HIV positive. If my father had benefited from it, I would not have had to figure out I was HIV positive and realise the consequences of it alone. Parents need support and guidance to go through all the phases with their child: disclosure, treatment, protection against stigma and discrimination, adolescence and all these emotions that young people feel.

As a young teenager living with HIV, you face stigma and discrimination at school, and rejection from your loved ones: boyfriend/girlfriend, sometimes family and community. There are days where you just want everything to stop. This is why having a pill buddy as well as family support is key. As as a young people you need someone who can listen to your fears, is able to answer your questions, explain the importance of treatment and make you take it.

Better child-friendly HIV treatment options are needed.

My hope is that soon we will have better paediatric treatments, because it is also the complexity of treatment regimens that adds to the psychological burden on young people. As a child I remember that I had to take my medication twice a day at 6 am and 6 pm not wasting even one minute. The taste was awful, and the side effects were very strong. I could not take my drugs on an empty stomach and had to rest to reduce the side effects. Treatment had a huge impact on my day to day living and I rebelled against it, why me? why now? I know that other young people do too, and I help them.

We need child-friendly medication: not bitter, easy to take, easily available, with no shortage/stock out, so that treatment becomes easy almost unnoticeable, and then it will be so much easier for anyone growing up HIV positive.

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child-friendly HIV treatment

child-friendly HIV treatment