What Sarah Needs

The last few weeks have been a bit of a blur of travel (Vancouver, Houston, Indianapolis, New York) and dental pain (nothing like a tooth abscess and the emergency removal of your wisdom teeth to complicate an already packed travel/work schedule). As I happily gum soft foods in Manhattan (still with the big sutured holes in my mouth, a real downside in a city of amazing food), I was thinking how many of the stories, connections, and work in which I have been engaging over the last weeks revolve around the medicines that we need for children with HIV.

My research focuses on how we can provide the best possible care for children with HIV who live in poor places like Kenya. More and more, I am trying to figure out how to address the problem that we do not have adequate or appropriate HIV medicines for children. (Yes, I like tackling big problems!)

Sarah's story is a great one to explain what this challenge looks like. Sarah is just one of the 14,500 children we care for in AMPATH - one of almost 8,000 we have on HIV treatment. I first saw her in clinic almost two years ago.

This is how Sarah looked when she first came to an AMPATH clinic in Kenya. I hate showing photos like this, but the reality is that this is what many of our children look like when they first come to clinic. Sarah was 3 years old, and she only weighed 11 pounds - 5 kg. That's how much babies weigh.

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Sarah's mother had died two years before we first saw her. Her elderly grandmother was struggling to take care of her. When Sarah appeared at our clinic, she was severely malnourished and sick. She was diagnosed with HIV and started on treatment.

This is how Sarah looked after receiving appropriate HIV medicines: 

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Smiling and bouncing around my clinic room. I called her my valentine when I saw her on Valentine's Day because she didn't want me to put her down - and she was very excited about the heart-shaped stickers I gave her.

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When I talk about some of the research that we are doing in pediatrics - and the research we dream about doing - I think about what that looks like for Sarah.  The entire reason for my research program in Kenya is to try to find ways to take good care of Sarah - ways to help children around the world, children just like Sarah, not only undergo this immediate transformation back to health, but also to grow and thrive for years and years and become adolescents and then adults.

But let's consider what these medicines mean for a child. We simply do not have the right drug options for a child like Sarah.

It is easy enough to write down what a child should get on a prescription pad, but we often don't really know what to do for a children of a particular size or age. We don't have liquid medicines. We don't have pills of the right size. We only have a too-big pill that is really tricky to give a toddler and that will give her either too high or a dose or too low of a dose.

And if she has another infection like TB, which requires medicines that can interact in bad ways with HIV medicines, or if a child has any other complications - we may not have any options at all. Too often, we don't know what to do!

These are the questions I struggle with: What is reasonable or unreasonable to do when you are giving adult-sized tablets to a child - can you ask a parent to break a tablet in half every day? Into quarters? What if the right dose for the child's weight would really be an eighth of a tablet? Do you just go with a dose that you know is way too high?

For Sarah, who came in weighing 5 kilos, this set of medicines is the best option we currently have for her - all liquid medicines that she can swallow easily.

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She would get 3 different liquids, one of which is a combination of 2 medicines that her grandmother has to mix up twice a day by crushing this tablet into 10mL of water. 1-2-3. A lot of bottles - even with the combination.

There is also a combination pill that includes 3 different HIV medicines in one pill, but it is this big pill.  How do you give that to a little baby or a severely malnourished little girl? Plus, we don't even have that combination pill available most of the time!

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As Sarah gets closer to the weight that she should be, our medicine options do not get that much easier. She should weigh more like 14 or 15 kilos. If she got to that weight, this is what we would want her to take every day:

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All these tablets in the morning. All these tablets in the morning. Half tablets and quarter tablets. Remember that she is only three! This is pretty crazy.

Every day. Twice a day. Breaking tablets. Dealing with all of these medicines. Making sure Sarah gets these every day for the rest of her life. I believe we can do better than this.

We need better options! We want medicines that have been tested in children, including malnourished children or children with TB. We want medicines that are in combinations or long-acting forms so children can take fewer pills. We want medicines that do not taste horrible. We want medicines that can be adjusted for a child who is growing every single month!

Plenty of big problems to be solved.

Posted at 14:29

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