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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