so when the panel opened with a series of doctor-led presentations on the challenges in cml that they saw from their side of the examining table — things like the concept of a cure, figuring out ways around the mutations that outsmart medicine, gaining more of an understanding of what makes cml tick and acknowledging that the quality of life for some people on medication really stinks — it was hard to ignore the fact that no one had suggested a plan of action for, or even acknowledged in any meaningful way, one of the most devastating challenges: lack of access to medication.
it seemed weird to be getting so ahead of ourselves talking about life without cml — as enticing as it was — within an international forum, without recognizing that so much of the world barely has a fighting chance against it. it’s this thing we tend to do in health care, putting issues and communities in silos, as if we can’t talk about one without mentioning another, ignoring the reality that, at the end of the day, almost every health challenge and barrier is connected on some level.
so i say: “i think it’s bananas that we are talking about a cure when so many patients are dying without treatment.”
the advocates in the room were nodding as i passed the microphone to the doctor from france who had leaned forward, elbows on her knees, poised to speak. she talked about not making light of the potential for a cure, and then someone else jumped in, saying something along the lines of how lucky we were to be at this point in cml.
it sounded as if they thought i was suggesting we forego plans for a possible cure in exchange for getting medication to those who don’t have it. i wasn’t. or maybe they thought that i didn’t fully get the good fortune that cml patients (in canada, the u.s. and europe) have been afforded in terms of survival. nope, that wasn’t it either.