the paywall really cuts down on the readability of this story. a quick google showed plenty of news stories though, their shareprice dropped 40% on the market today.
I'd be curious what the numbers are for the "good" that this therapy does; is there any way that this therapy is still "worth it" at any scale? but I know little about this area so that's a fairly naive question.
I've been working on a piece about how humans effectively have hardened firmware, and gene therapies need to do A LOT to try to get around the various defenses our bodies evolved. I should probably finish that article...
Whatever policy we pursue, whatever decision we make, is not forever (at a society level).
When people die, we change policy. When people feel like they cannot get the treatment they need, we change policy.
Unfortunately, this is very complicated and emotionally heavy, and it is much easier to set down the burden on someone else's shoulders, in the form of blame.
We want the FDA to do life critical, complicated and contradictory things, so it's easy to create a narrative that blames the FDA.
The other option besides blame is shared responsibility and humility, but it feels like people are not very good at thinking that way right now.
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[ 4.2 ms ] story [ 36.3 ms ] threadI'd be curious what the numbers are for the "good" that this therapy does; is there any way that this therapy is still "worth it" at any scale? but I know little about this area so that's a fairly naive question.
https://medcitynews.com/2025/07/sarepta-gene-therapy-fatalit...
Thoughts from Derek Lowe (In The Pipeline).
When people die, we change policy. When people feel like they cannot get the treatment they need, we change policy.
Unfortunately, this is very complicated and emotionally heavy, and it is much easier to set down the burden on someone else's shoulders, in the form of blame.
We want the FDA to do life critical, complicated and contradictory things, so it's easy to create a narrative that blames the FDA.
The other option besides blame is shared responsibility and humility, but it feels like people are not very good at thinking that way right now.