Helen's grandmother comes into the HIV clinic clutching a black
laptop case in one hand and leading her two-year-old granddaughter
with the other hand. When I ask her about her experience giving the
toddler her HIV medicines, she sets the laptop case on the desk and
takes out the 4 large, grimy medicines bottles from which she
withdraws Julia's medicines twice a day. (Laptop cases are seldom
for laptops in rural Kenya.)
Some of the medicines transported in the case are liquid syrups
that she draws out with a syringe to squirt into Helen's mouth. The
other medicines are tablets that need to be broken in half to give
Helen the right dose for her weight. Morning and night, she
wrestles with the toddler to get her to take two mouthfuls of
different liquid medicines and two different half tablets.
Most of the time, this actually works out OK. Helen is usually
willing to swallow the medicines, but her grandmother notes that
she really does not like the broken tablets, not to mention that it
is more difficult to make sure that she has the half tablets broken
As I look over her chart, I realize that Helen is growing (a
good thing) and that the best thing would be to increase her dose
of some of the medicines. But what to do about the 1/2 tablets? If
a half tablet is a struggle, giving 3/4 of a tablet would be even
worse. But a whole tablet is way too much...
- Not all shoes fit.
The broken tablets are not just a problem for Helen. We have
been struggling this week with revising our protocols for how our
30+ clinics should prescribe HIV medicines for the 25,000 children
in our care. This is a particularly frustrating process because we
really do not have the kinds of medicines we need for children.
For the youngest children, the medicines that seem to work the
best to keep them alive are syrups that taste terrible and no one
wants to take. What's the better option - a medicine that might not
work quite as well that the baby will actually swallow or a
medicine that works the best but they constantly spit out?
And then there is the issue of the sizes of medicines available.
What do you do when the medicine that a baby needs is only
available as a pill and not as a syrup? What do you do when the
right amount of medicine for a child would require them to take ¾
of a tablet? Is it reasonable to have to break a pill into quarters
twice a day and then to give those fragments to the toddler? If you
can't break the pill into the right number of pieces, should you
give the child a higher dose that might make them more likely to
have bad side effects? Or should you go with the lower dose that
might allow this blasted virus to become resistant to the medicines
so that the medicines won't work any more?
I have been wrestling with the weight of these decisions,
especially as we try to implement new treatment guidelines from the
WHO. We try to follow the guidelines where we can, and we try to
make the best decisions we can figure out for our children based on
whatever science is available. It's tough to know what to do
though. Err on the side of too much or too little? The bad-tasting
medicine that no one wants? Wrestle more with liquids or with
splitting up combination pills?
What we need are more medicines for children with HIV. We
desperately need them. Medicines that come in smaller doses or
sizes. Medicines that come as liquids that last well even without
refrigeration. Medicines that don't taste bad. Medicines that have
been tested in children to make sure that they have the same
effects as they do in adults. Medicines that work.
It's awfully hard to get such medicines. Drug companies don't
have a lot of reason to invest in new medicines for children.
Children don't vote. Children don't have money. Children often
don't have the ability to speak up for themselves. And if you are a
poor child in a poor country with a disease that's rarely seen much
in the richer parts of the world, it's even less likely that you'll
get the medicines you need. Helen and her grandmother are not the
voices that the drug makers usually listen to. There are 1,000 new
Helens every day - 1,000 children a day who become infected with
HIV and who need these medicine options. Mamas and babies need
these medicines that no one wants to make.
In the meantime, we're muddling along and trying to do the best
thing we can for Helen and her grandmother and the several thousand
children to whom we are giving these medicines. Here's to hoping we
make the right decisions!