a voice for children

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Julia'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, the grandmother 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 Julia's mouth. The other medicines are tablets that need to be broken in half to give Julia 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. Julia 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 Julia 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...

 

The broken tablets are not just a problem for Julia. We have struggled over the last few months with revising our prescription form used by the clinicians in the many AMPATH clinics to prescribe HIV medicines for children. This seems like a simple matter - we recommend various doses of the medicines depending on the child's weight. But the decisions we make about the prescription form set our policy for dosing medicines for the 25,000 children in our care. And this is a particularly frustrating process because of the status of children's HIV medicines.

 

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?

 

We have been wrestling with the weight of these decisions. There are guidelines from organizations like the WHO, but some of the recommended doses give the child a very high dose of one medicine or another because our options are so limited and because we are all trying to make things as simple as possible too. 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? Wrestle more with liquids or with splitting up combination pills....

 

And, really, 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. Julia and her grandmother are not the voices that the drug makers usually listen to. And even though there are 1,000 new Julias every day - 1,000 more children a day who become infected with HIV and who need these medicine options.

 

In the meantime, we're muddling along and trying to do the best thing we can for Julia and her grandmother and the several thousand children to whom we are giving these medicines. We're aiming for a form that leads to fewer errors for the clinicians as they calculate and prescribe the doses. And we want to recommend as easy and accurate a dose as we can manage. Here's to hoping we made the right decisions!

Posted at 11:24

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