I remember the first child I brought to the counsellor for disclosure – finding out they are HIV positive. How he stared at her with big eyes while she showed pictures of the ‘soldiers’ (immune system) and the virus.
“Inonzi HIV,” she said, pointing at the angry-looking green blob, showing its fangs. “It’s called HIV.”
The child didn’t say much; he just kept staring at the pictures with those big eyes, smiling embarrassedly at times when she was asking him questions. Towards the end she asked him to draw a picture. He took his time drawing a girl, making sure to fill in the arms and legs with many small black lines. On top of her he wrote: Ebola. The counsellor laughed.
“Not Ebola. HIV!” She took his pen and scratched out what he had written.
“Could you ask him to explain his picture?” I said. The boy spoke with a shy voice, but he used more words than I had expected.
“He is saying the girl is ugly, like HIV. He wrote Ebola because they learnt about it in school, and it is scary, like HIV.”
He was a nine-year-old boy and I had to convince his mother to bring him for disclosure.
“He’s too young,” she said. “He won’t understand.”
I explained to her that it is better for children to find out early, that it is less traumatic and helps them to adhere to their medication.
“Besides, the counsellor has ways of explaining that kids understand.”
I was surprised at how easy it was to convince her, as though she was just waiting for a push.
The next time I saw him he was smiling at me, and we did a ‘give me five’. It was at the support group for kids and he was taking everything in with big eyes. I was happy to see him. I knew that we had made a difference as this child had a better chance of caring for himself and his condition when he knew what he was suffering from.
The nurses have made a survey of how many kids have received disclosure. 98% of kids aged 5-10, 57% of kids aged 11-15 and 14% of adolescents aged 16-20 did not know that they had HIV. Imagine that! A child that has been taking pills all his life, almost reaching adulthood, maybe even having sex, without knowing about his status. No wonder so many of them are throwing away their pills, pretending to take them but secretly hiding them under their pillow.
“We will focus on disclosure,” I said on the project’s annual presentations of our plans for 2015. It may sound like empty words, but it is really happening. The counsellors are having disclosure discussions with the caregivers and the nurses are encouraging more and more caregivers to go with their kids to the counsellor for disclosure.
I’m amazed at how well it is working. If we are managing to get most kids to know about their status, then we will have made a huge difference to this population. And even if MSF isn’t around in the future, the impact will still be here.