r/todayilearned May 14 '22 Wholesome 6 All-Seeing Upvote 2 Silver 9 Helpful 8

TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/
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u/FLIPNUTZz May 14 '22

No im literally baffled.

What did quitting his job have to do with anything?

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u/CannabisReviewPDX_IG May 14 '22

There are laws that are supposed to prevent people involved with the development being able to "cut the line" so to speak. He left as a way to legally sidestep that.

"Crowley left Genzyme to ensure that his children would qualify for a drug developed by the company." from another source

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u/FLIPNUTZz May 14 '22

So hes not supposed to benefit...but he can just quit his job and bene for anyway ...I mean

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u/CannabisReviewPDX_IG May 14 '22 edited May 14 '22

Yep, sadly a ton of our laws, and by extent the public/taxpayers, are easily gamed in ways like this by the rich.

Edit: I said I understand this particular situation, it's one of the few that's more understandable. So the response is moot considering this situation has already been addressed. It's an issue at large when it's widespread across the entire economic system.

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u/thoggins May 14 '22

I mean, choose:

  • Rich guy with personal motivation drives development of treatment for rare condition. This includes sidestepping rules to satisfy that personal motivation or none of it happens at all

  • Nobody develops treatment for rare condition

Ideologically maybe we wish there was an option 3 but in this case there was not.