Every year for the last three years a group of influential women made up of locals and expatriates gets together to raise money for the children in the hospital who are HIV positive or who have cancer. The proceeds go towards getting Christmas presents for the children.
Our social worker becomes Santa’s helper and gets a wishlist from the children. The ladies try to fit the bill as best as possible. They have never met the children before and the children don’t know who they are.
Knowing there is a Christmas present to look forward to helps a lot with our adherence programme. We tell the children it’s their reward for taking their medication and for coming to the clinic regularly.
The parents are usually happy with this. The children get gifts like bicycles which their parents would otherwise not be able to afford. The gifts are delivered and given discretely during clinic visits in December so they don’t stand out from other children in the clinic who are not HIV positive. Our social worker delivers the presents to the children who live far away from the clinic.
The greatest lesson I’ve learnt while working with HIV positive women and children is that much can be done with limited resources. Even when we had little to offer we didn’t give up. When support came from international donors like The Clinton Foundation and the Global Fund to Fight AIDS everything was in place to build on the little that was initiated. We could have thrown our hands in the air but we never gave up hope.
My greatest fear is the loss of funding from our international donors. I’d hate to go back to the dark days where people had to pay for their own medication. Sustaining the programme without the funding for medication would be a great challenge.
Our next challenge is to help adolescents who have survived their childhood with HIV. I never thought I’d see the day and I’m happy that these children are growing up. The main problem with increasing age is the challenges of adolescence. They have been taking medication all their lives and some of them get tired of it. They want to be like everyone else and this poses a problem with adherence.
They get less supervision than when they were children and a few have been known to hide their medication. Those that remain compliant have been exposed to medication for so long they may eventually need a third line of drugs which is not available. I’ve lost three teenagers born with HIV who could not access third-line drugs. This is a new challenge but that never stopped us before. We’ve learnt to find creative ways to deal with the psychosocial and financial hurdles and a myriad of other problems.
Families living with HIV now have hope and live normal healthy lives once they learn how to include their treatment as part of their daily routine. The children have a future and more people are accessing the care that’s available. Once they overcome the fear of stigma and put their health at the forefront, HIV is treated like any other chronic disease.
As told to Andrea Downer