Going to the birthday party of a kid who is about to die is really, really hard — much harder than I thought it would be.
In the course of writing about global health, it's inevitable that you'll meet people who are dying. And it's always sad, but in order to get the story done, it can't be overwhelming. In this case, though, it was. At one point, watching “Fanyana” (his real name cannot be released) eat cake and dance to Rihanna, I had to stand up and turn my back to wipe away tears.
That night, back in my room at the guesthouse, I flat-out bawled.
Maybe it would have been easier if Fanyana hadn't been incredibly cute. Maybe it would have been easier if he hadn't seemed to be having such a good time. Maybe it would have been easier if he hadn't been such a good-spirited kid, despite the fact that he's spent most of his life in this isolation hospital. But, really, I think it would have been easier if he wasn't dying of a disease that didn't have to exist, a disease that we created.
Drug-resistant TB didn't have to evolve. When the last new TB drug came out 40 years ago, the outlook for controlling tuberculosis seemed promising. And yet, just a generation later, 1.6 million people are dying each year from tuberculosis. Rates of drug-resistant TB have skyrocketed.
And hundreds of thousands of people like Fanyana will die because somewhere along the way a patient stopped taking their medicine before their TB bacteria was completely dead or a doctor prescribed the wrong dose, and it mutated into a resistant form. And then that patient spread it to someone, who spread it to someone else, and so on, until it reached Fanyana's mom who passed it along to him. At some point, Fanyana's fate was entirely preventable. But now, it's too late.
Too late because we didn't implement the treatment for regular TB well enough among the thousands of people who are diagnosed each year. And too late because there aren't any new life-saving TB drugs about to come onto the market — the few drugs in the pipeline are still five to 10 years away from getting into the hands of doctors and patients. There is work being done on drug-resistant TB, but none of it will come to fruition in time for Fanyana. For him, we're just too late.