Today is World AIDS Day. While the situation for people who are infected with HIV has changed a lot since World AIDS Day was first announced, in some ways things seem to have changed hardly at all. When I work with institutions that house children with HIV to transition to family-based care, the biggest obstacle that we run into is not the children’s health issues or medical needs, it is still stigma and discrimination.
One of the main elements of transition of care for children with HIV still has to be the breaking down of stigmas and misunderstandings surrounding HIV. At the end of the last century, when HIV and AIDS were still little understood and the worry of an out of control epidemic was all-consuming, campaigns to halt the spread of the virus were almost entirely fear-based. All around the world. And these campaigns have been very effective, although probably more effective in ingraining a disproportionate, deeply held fear of anything to do with HIV than in putting a stop to the spread (though it had some success there too).
Now we are a couple of decades on, and medication has been developed that allows people with HIV who have access to it to successfully manage the disease and live a normal life span. For the majority of people, HIV is no longer a death sentence. However, fear and stigma are still there. The misconceptions about what it takes to be infected with HIV – and outside of unprotected sex and needle sharing it is actually pretty hard to be infected – still prevail.
This leads to people with HIV still being marginalised and ostracised. It can lead to people not getting diagnosed so that they can get the medication needed to allow them to lead a pretty normal life because the fear that someone might find out is too great.
It also leads to children with HIV, who in their culture would normally have been taken in by extended family members or community members after their parents pass away, being placed in institutions. It leads to parents or other family members being unwilling to have their child returned from an institution – even with the promise of ongoing support – because of the feared reaction from the community. It leads to great difficulties in finding foster families and adoptive families for children with HIV.
To protect vulnerable children and to prevent their unnecessary separation from their family, it is essential that more is done to break down the fear and stigma surrounding HIV, both as part of deinstitutionalisation and child protection reform processes and outside of that. Adults and children living with HIV have the same rights to family, living in the community and to dignity as everyone else. We need to keep fighting for those rights, all of us together.
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