Much of my research work focuses on the challenge of having a child take three different HIV medicines, twice a day, every day for the rest of their lives. Adherence to these medicines that we prescribe, the medicines that enable children to grow and thrive despite the HIV in their blood, is crucial to the long-term success of our HIV care program.
Eric is two-years-old, and he is about to start on these medicines for HIV. After he had several bad bouts of pneumonia, he got tested for HIV and the test came back positive. This means that his mother’s test is going to be positive too, and as she sits across from me in the clinic, I see the weight of those positive tests in her eyes. She is here for me to talk about medicines for HIV. Not only is Eric’s HIV test positive, but other tests show that his immune system is already very, very weak. Because of that, he’s not gaining weight, he’s not growing, and he’s getting all of these bad sicknesses. It is time to start Eric on HIV medicines, but that is not something we do without a lot of counseling and education for his mother first. His mother is going to need to be the one to give Eric four medicines in the morning at 7am, and 3 medicines in the evening at 7pm. She is going to need to know how to measure out the different doses of each of the medicine syrups. And she needs to understand why it is so important for him to get these medicines every day, at the same time each day.
If you take medicines for high blood pressure or for diabetes or for asthma, it might make you sick if you don’t take your medicines regularly, but if you start taking them again, they will work for you once again. With HIV, if you miss doses of your medicines, the virus becomes resistant to those medicines and they don’t work any more. So, not only does missing the medicines mean that your body might be very vulnerable to getting sick, missing the medicines means that the medicines might stop working for you all together. We only have limited options for medicines for HIV, and so we desperately need to keep them working. This is what I emphasize to Eric’s mother. We must keep the virus sleeping and we must keep the medicines working. We can keep your son healthy, but we only have limited weapons in our arsenal.
But I also tell Eric’s mother that we understand that it’s really, really hard to give your child a whole bunch of medicines every single day. And it might be even harder when you are struggling to live on $1 per day, when you walk a mile to get water, when you sometimes go without food so your child can have one meal a day, when you are working 12 hours days to scrape together just enough money to keep going. And it might be even harder yet when your toddler spits out those medicines or your growing child refuses to take medicines they don’t think they need or when you have to hide this whole business from everyone else in your family.
“I accept to give these medicines,” Eric’s mother tells me. She accepts the challenge. And thus another one starts on HIV medicines, and I offer silent prayers that our clinical system figures out how to help her in this challenge. This is what my research needs to help us figure out — how to know when she is having problems with adherence to the medicines and how to support her when problems arise.
This commemoration of World AIDS Day is ending, but another week of work in Kenya begins. I’m here in Kenya now, and I’m ready to work, and there is plenty to do. Off we go.