My research focuses on how we can provide the best possible care for children with HIV who live in poor places like Kenya. One of the issues that makes me crazy when I try to take care of children with HIV is that we do not have adequate or appropriate HIV medicines for children. During the last few weeks, I have thrown myself into advocating for the medicines that we need for children with HIV (last week, I got to do this for the Gates Foundation!), and I am on my way to Boston this weekend to do more of the same.
I like to use show-and-tell to help people understand what I am talking about. Show-and-tell and stories. So, let me tell you Sarah’s story (you’ve maybe seen her before if you read my blog regularly). Sarah is just one of the 14,500 children we care for in AMPATH – one of almost 5,000 we have on HIV treatment. I saw Sarah in one of our clinics last week, but 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 kilograms.
Sarah’s mother had died two years before. Her mother received some HIV care, but we do not know exactly what happened. Her elderly grandmother was struggling to take care of her. But, 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. Smiling and bouncing around my clinic room. Still tiny for her age, but a little girl who makes anyone who sees her smile.
When I talk about some of the research that we are doing in pediatrics – and the research we dream about doing – I want to talk about what that looks like for Sarah. After all, the entire reason that we are doing this research here is to try to find ways to take good care of Sarah – ways to help children like Sarah around the world not only undergo this immediate transformation, but also to grow and thrive for years and years and become adolescents and then adults.
But let’s do a little show-and-tell of what these medicines mean for a child. Our biggest problems for children often involving not having the right formulations of drugs for children or not having enough options for a child of a given weight.
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 an option that will give too high or a dose or too low of a dose. And if a child 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!
And 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 would be our best option for her – all liquid medicines that she can swallow easily – 3 different liquids, one of which is a combination of 2 medicines that her grandmother has to mix up by crushing this tablet into 10mL of water. 1-2-3. A lot of bottles – even with the combination.
As Sarah gets closer to the weight that she should be, our medicine options become even more challenging. 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:
Nine pieces of tablets every day. For a three-year-old. Our other option (not much better!) is to give her this:
At least 3 tablets in the morning. Four in the evening. Half tablets and quarter tablets. And, yes, that yellow pill is a giant one. It also comes in a liquid version — which tastes completely, wretchedly horrible. So, we are asking Sarah’s grandmother to do this 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. Remember that she is only three! This is pretty crazy.
We need better options! We want medicines that have been tested in children, including malnourished children or those with TB. We want medicines for children that come in combinations or long-acting forms. We want medicines that do not taste horrible. We want medicines that can be adjusted for a child who is growing every single month and who needs a different doses every few months. (I want a lot, I know. But these are my demands for the 3.4 million children living with HIV.)
My weekend excitement includes the opportunity to participate in an advisory meeting with a bunch of people who can actually make new forms of medicines for children with HIV. I am armed with data about our thousands of children and what they need. And I am armed with the story of Sarah in my head! Truly, I can’t wait.