Nancy is scared every month when she takes her son to the HIV
She is scared that one of her neighbors will see them on the way
to the clinic and figure out that they have HIV. She is scared that
her boy might get sick again and that the next battle for his life
in a rickety bed on the hospital ward will not end well. She is
scared of the doctors at the clinic with their big words and
judging eyes and explanations that she does not understand.
Nancy wants nothing more than for her son to be well. She wants
her six-year-old to laugh and eat and run down the road from school
with his friends. Even though she can barely afford to buy a small
hunk of meat for a stew once a week, she wants her son to outgrow
his school uniform, his one pair of shoes, his two pairs of pants.
She wants to have to buy Matthew new clothes.
When Nancy looks at all of those bottles of HIV medicines that
she is supposed to give to her son, she sees them as bottles of
hope. Bottles that fight down her fears. She remembers how Matthew
looked in that hospital bed before the medicines, how sick and how
small he was. When the doctors gave her these medicines, they gave
her back her son.
When Nancy goes to the HIV clinic, she is scared that the
doctors might take away these medicines. As much as she tries to
give Matthew these medicines every day, she is not always sure she
does it right. She is not sure that she gives the right amount when
the dose changes every month. She is not sure what to do when
Matthew has those sores in his mouth and is spitting out the
medicines. She does not always give the medicines when there is no
food in the house and Matthew's stomach is empty, sore and
But Nancy does not bring up these concerns to the doctors
because she is scared. She wants her son to be well. She wants to
take good care of him. She is scared they will take the medicines
away because she does not have the answers.
Some of the work that I presented last week at the International
AIDS Society meetings in Malaysia was our antidote to Nancy's
fears. Our idea has been that, if we could ask patients like Nancy
the right sorts of questions, we could figure out whether they were
having trouble with their HIV medicines. With the right questions,
Nancy might feel comfortable talking about her concerns. We were
hoping that we could make those scary doctors in clinic a little
And it worked! We have been able to identify a set of really
important questions that we can ask in all of our clinics,
questions that actually help mothers and grandmothers and fathers
and uncles to talk to us about the challenges they have giving
their children HIV medicines. The answers to these questions match
up with who struggles with the medicines (even when we measure
their medicine-taking using special bottles that record
electronically whenever they are opened.)
Our clinics across Kenya are starting to ask these validated
questions -- and to start these important conversations -- with
Nancy and all the caregivers like her. Even better, presenting our
work at the international meetings helps us to share these
questions with other sites like ours around the world. We will look
at families' adherence to medicines in a global collaboration of
HIV care programs around the world.
Now that we know that these questions work, more and more places
will be using them. More conversations about what it means to have
a child taking HIV medicines every day. When we know who is having
problems, we can help. Less fear, more hope.