profile of Kenyan Woman

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 properly.

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...

big sandals_walking_street
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.

clinic_babies mamas waiting

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!

Posted at 09:57


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