machado: if a disease is well-managed in canada, but a killer somewhere else, is it a true treatment success story?
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when will we all have the same opportunities for decent care, adequate treatment and survival? getty
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“we must not discount that we are talking about a cure. just because other countries don’t have treatment, it doesn’t mean we ignore what we are doing here.”
this from a leading doctor from france. we were speaking on a panel arranged by a global organization to discuss the research challenges in a rare-ish blood cancer called chronic myeloid leukemia (cml). in attendance were about 60 people, mostly doctors, but also advocates from all over the world representing people living with cml.
why don’t we talk about lack of access to medication more?
in resource-rich places like north america, europe and the united states, cml can be well-managed with targeted medication, though many people struggle with significant side effects that affect their quality of life, like extreme fatigue, nausea, rashes and bone pain. for others, medication fails and they face the daunting process of undergoing a stem cell transplant. there is also a portion of people who do not survive.
the bad stuff happens to people living with cml in other parts of the world, too, but mostly the not-surviving part, and mostly because they can’t get medication, either because it’s unaffordable or simply not available in their country.
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.
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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.
i was pointing out that the trenches of inequality across the globe are so deep when it comes to drug access — and not just in cml — that no fruitful conversation about research or challenges can be had without including the reality of all patients, no matter where they live. this is partly because not doing so means that we miss the opportunity to share solutions, advice and support. but more importantly, it skews our understanding of the real impact of the disease: if cml is well-managed in canada, but a killer in the philippines, is it a true treatment success story?
certainly, cml is not the only disease in which we see this kind of oversight. from other cancers and rare diseases to mental health even, there are different degrees of how and if a health condition is treated depending on where you live in the world. heck, even in canada, whether or not your cancer medication is funded depends on your postal code — but talking about it is one way to start churning up change.
more health professionals should work like advocacy groups
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it didn’t take long before two representatives from africa were on their feet, hands up, looking for a microphone. each shared their own country’s barriers to good cml care, asking the doctors in attendance for guidance and support. and while there wasn’t much discussion around their comments, they did an excellent job of making their point: that there’s still so much work to be done. i can only imagine how difficult it was for them to sit through presentations about new treatments with less side effects that were to become available in the united states, when the patients they see every day don’t have any medicine at all.
after the session wrapped up, a friend met me at the stage to ask what it was going to take to get treatments to the places that seem far enough out of sight to be out of mind. we decided that perhaps more health-care professionals should operate like advocacy groups, stretching across cities and oceans no matter the currency, culture or language to share experiences, provide support to each other and take up one another’s challenges to get the best care possible for their patients.
maybe then, we could finally get to a place in which everyone — whether they are in the next town or across the globe — had similar opportunities for decent care, adequate treatment and well, survival.
lisa machado is the executive producer of healthing.ca. follow her @iamlisamachado.
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