machado: the mess that is canada's healthcare system is proof of what happens when we ignore lived experience in favour of cost
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we can toss around numbers and hold those who set drug prices accountable, but all of that only gives us part of the real story.
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whew. it’s getting hot out there in all things healthcare.
this week not only saw two provinces advising patients against going to hospital unless it was “urgent,” but also, there were more warnings about overflowing ers and ambulances with nowhere to take sick people.
the last five days have also been very heavy in our newsroom, weighed down by the brads, chads and roberts who felt it necessary to share their .02 with drippy sarcasm, not only about last weekend’s column that discussed the fact that patient groups sometimes get financial support from pharma, but also the role that these organizations shouldn’t play in healthcare policy.
the people who work, volunteer and advocate for patients and caregivers have been on a long, bumpy road to get to a place where the lived experience of their communities acknowledged as valuable and critical to the healthcare system and policy creation. but also where compensation for sharing these experiences and insights is a given, and where no decision about them is made without their bodies and perspectives at the proverbial decision-making table. we’re not there yet, if you pay attention to the spitty murmurs of the brads, chads, and roberts, but each time a health policy conference shouts from the rooftops that its keynote is a person with lived experience or a caregiver is sought for feedback on the design of a clinical trial, it feels like we’re getting close.
still, healthcare remains the one area of industry where the end user is considered an after-thought, the one about whom everyone else “knows better.” consider the last time you were asked to provide your opinion of a restaurant, your internet service or your amazon order experience — probably yesterday. i don’t know the last time i was asked my opinion as a patient about anything healthcare-related. ridiculous, since managing health and doing it well is a million times more important than a cruddy dinner out, glitchy wifi or late parcel delivery.
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patient stories a “well-worn meme to push drug funding,” according to picard
it was in this misty debate around advocacy groups and the value of lived experience that a colleague sent over a 2014 globe and mail column by andré picard, a renowned journalist and recent recipient of the order of canada. in it, picard takes aim at using what he calls “sob stories” — a.k.a. lived experience — to influence the funding of expensive drugs. his disease of choice was cystic fibrosis, the drug, kalydeco (also known as ivacaftor) — one that cf patients and families wanted funded and which cost more than $300,000 a year. twelve-year-old ontario cf patient madi vanstone was one of the faces at the forefront of this drug access fight — a campaign that picard describes as a “well-worn meme to push drug-funding,” referring to the strategy as being to “trot out” children with a “sob story backdrop.” (kalydeco had been approved for funding in ontario after successful lobbying by madi and her mom beth.)
picard’s beef wasn’t so much as whether or not madi and others like her should or shouldn’t have gotten the drug that would make breathing a whole heck of a lot easier, cut the number of hospitalizations and provide a better quality of life. rather, he was taking issue with the use of what he called “emotional blackmail” to push drug-funding decisions, emphasizing instead both the importance of considering scientific evidence that the treatment worked and was worth the incredibly high price, while pointing out that we should be questioning why the price is so high in the first place.
certainly, it’s good business sense to weigh cost with value before opening your wallet for anything — to ensure you are getting the most “bang for your buck,” as picard says. but only if you are deciding on a place to dine, an internet provider or where to order your favourite fluffy socks that you need, like, tomorrow. when it comes to heartbeats though, there’s just no comparison. sure, we can toss around numbers and hold those who set drug prices accountable for their decisions and even do some funky cost-value analysis, but all of that only gives us part of the story. the rest of it, and arguably the most important, comes from lived experience, from the people who “trot out” and bravely tell their stories — for themselves, but also for those who come after them. (madi, by the way, is in her twenties now, doing well, an unwavering support for others with cf and a relentless advocate for drug access.)
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when we discount stories like madi’s, and others, in favour of cost considerations, we sign up to pay a dear price — and not in terms of a hazy bottom line.
just take a look at the state of canada’s healthcare system. this is what cost-based healthcare decisions get you, and it’s not pretty.
lisa machado is the executive producer of healthing’s advocacy & better health. she can be reached at lmachado@postmedia.com.
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