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Ethical Considerations

Extradorinary Measures – but not for U.S. Kids w/ Pompe

From Roger Ebert’s review of the Harrison Ford/ Brendan Frasier flick (my emphasis):

The film also fails to explain that the cost of the [Pompe disease] medication is $30,000 a year for life, which limits its impact in the United States because many American insurance companies refuse to pay for it. According to Wikipedia, “The vast majority of developed countries are providing access to therapy for all diagnosed Pompe patients.”

Make no mistake. The Crowleys were brave and resourceful, and their proactive measures saved the lives of their children — and many more with Pompe. This is a remarkable story. I think the film lets them down. It finds the shortest possible route between beginning and end. It also sidesteps the point that the U.S. health-care system makes the cure unavailable to many dying children; they are being saved in nations with universal health coverage.

Someone want to tell me again we don’t need healthcare reform in the U.S?

One reply on “Extradorinary Measures – but not for U.S. Kids w/ Pompe”

Honestly – Ebert's review has A LOT of facts wrong – kids in the US are having treatment covered by insurance, while it is still in experimental phase for adults – Genzyme makes it available, regardless of insurance coverage… But yes, we still need healthcare reform!

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