Michael has been taking HIV medicines since he was 3 years old. He’s 10 now — and he is alive and growing — but the medicines are not doing what they should. The virus is multiplying in his blood, and he has virtually no immune cells. It’s clear that either the medicines are not working or he is not taking them.
At first, his mother claimed that they have no problem taking the medicines, but eventually she started to be able to tell me about how much of a problem it is getting him the medicines every day.
Michael’s mother runs a small bakery. She leaves early in the morning, and she doesn’t get home most evenings until after Michael is in bed. This bakery is a one-woman success story. It is how she supports her three children, and her sister’s family besides. But her work to keep their family alive is inadvertently threatening Michael’s health.
Most of the time, Michael doesn’t take the medicines without her there to supervise. And so it turns out that he is missing a lot of doses of his HIV medicines. Without the medicines, the virus multiplies. Without the medicines, his immune system weakens again, and he gets sicker and sicker.
Michael’s mother doesn’t want to enlist the help of anyone else to give Michael these medicines because if anyone saw those medicines, they would assume that everyone in the family had HIV. And she knows what their community thinks about HIV. HIV means you are dirty. It means you have sinned and you should be avoided. It means you are going to die. She looks around her, and she only sees the potential for stigma and discrimination. If people knew that she had HIV, they would stop coming to her bakery.
“No one wants to eat food that is prepared by one with HIV,” she says.
She doesn’t want to risk losing the business that she has worked so hard to build. Her family’s survival depends on the success of her shop. Michael’s mother travels almost two hours to come to our clinic in Eldoret, rather than going to our clinic closer to her home. All because she never wants anyone to know that they come to a HIV clinic.
After our long talk, we planned together some new efforts to make sure that Michael gets all of his medicines. She agreed to try something new. And I had to tell her scary things. I had to repeat how we do not have any other alternatives left if the virus in Michael’s body becomes resistant to the medicines he is taking now. And if he doesn’t take them twice a day, every day, the virus will indeed become resistant.
They are hard words to say and hard words to hear, but they are true. Once these medicines stop working, then that’s it – there won’t be anything left to help the boy. We don’t have any other medicine options for kids in poor places like Kenya. (I think that’s totally unacceptable, but it’s also true. My heart breaks. My heart vows to fight. )
I think she got it though, and so I give them another chance to make it work with the current set of medicines. And I am left with these reminders from my time with Michael and his mama:
How vitally important is our work to determine which families are having problems with their medicines.
How much we need to address the terrible and isolating views of the communities around our families.
How great is our need to make appropriate HIV medicines accessible to children in the poor places where 90% of the world’s HIV-infected children live.