The problem with antiretroviral therapy -- the medicines that
fight HIV -- is that if you don't take theses medicines almost
perfectly the HIV virus can become resistant to the medicines and
then they won't work any more. You have to take the medicines every
day, at the same time each day, and you have to keep doing that for
the rest of your life. Adherence to therapy (taking the medicines
the way they are prescribed) is central to the long-term management
of this disease. This is the focus of much of my research work.
First, I am really trying to figure out how better to measure
children's adherence to HIV medicines. We need to find out which
families are REALLY having problems so that we can then figure out
how to improve their adherence. And we need to learn how to do that
in this very particular setting in Kenya - and in other poor places
like Kenya. The context really matters here. We need to ask: What
is it like to take these HIV medicines every day when you live in
one room of this mud structure? What is it like to take these
medicines every day when you are Kevin?
Kevin is 6. His father and his mother have died, and he lives
with his uncle and auntie in far room of this mud complex.
Kevin's auntie gathers water from the stream in that yellow bucket,
and she does her cooking over a small fire in the wooden structure
attached to their house. Inside the one room, Kevin lives with his
auntie, his uncle, and his two small cousins. Kevin is not
the only one in the family with HIV. His mother and father
died from HIV, but his uncle, his auntie, and his two small cousins
are all infected too. This is their big secret though.
They keep the medicines and their diagnosis as hidden as they
possibly can - even though they live in this compound with 20 other
people. They have seen their neighbors react to others who
are known to have HIV. They have seen them refuse to share
their food, move away from them on the bus, and prevent their
children from playing with those who are known to be
infected. Kevin's family is ashamed of this virus in their
blood. And in the midst of this stigma and isolation and the
grinding poverty, it can be pretty hard to make sure that a small
boy takes 4 different medicines twice a day, every day. So,
how do we best help Kevin and his family take these medicines every
day for the rest of their lives?
The challenges to keeping up with these medicines are one of the
hardest things caring for these families for the long haul. So
that's the kind of thing I work on. I have done research work to
gather their stories, to create a conceptual model of how
children's adherence functions in a place like Kenya, and now I am
working on a great measurement project to figure out which families
are having problems with their medicines.