Michael Lewis hittin heavy a GAIN !!!!!!
You can't do science with rare disease
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You can't build a they can't get a big
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enough sample You can't do randomized
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case studies with with a drug that you
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know where the disease might kill the
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people who don't get the drug So all we
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have is the stories and she's built this
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website this this and this app to
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accumulate the
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stories It is a brilliant idea It is
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exactly what the government should be
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doing The market won't deal with this
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rare disease There's no big business in
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rare disease because it's rare And so
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this cure exists Nobody knows about the
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cure But the government as it should is
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going to step in gather the stories of
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these cures disseminate them all doctors
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around the world So when you walk into
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your hospital with this amoeba eating
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your brain they can fix
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you Our government has lost its stomach
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for these great things She's doing this
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thing all by herself The app is Cure ID
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it's called is up and running She can't
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publicize it She can't promote it this
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kind of dissent within her own operation
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about just how much emphasis they'd be
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placed on this because it's not exactly
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science It's telling
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stories Um the story I tell I mean it's
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a happy it's sort of a comedy or a happy
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story with a with it's a it's a tragedy
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with a happy ending A little girl in the
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middle of
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Arkansas contracts balamuia The only
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reason she's given the drug that saves
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her life is that the mom finds Heather
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Stone herself uh through obscure
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academic paper gets in touch and these
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FD and the woman at the FDA gets her the
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drug Yeah Doesn't work the way it's
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supposed to It's sort of like that story
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sort of
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dramatizes the disconnect between the
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the the ambition and the quality of the
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people in the government and what the
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government seems capable of carrying out
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right now It is this thing that's
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incredibly frustrating I promise you
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that if I if I dropped you just randomly
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into the federal government you would be
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shocked by the caliber of the people and
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you would be shocked by how it doesn't
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the whole thing doesn't work very well
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and it's very upsetting
posted by piety piet @ 9:33 AM
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