4 minute read
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.
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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.)
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