The Amish Pool Resources for Their Medical Care. A Budget-Busting Gene Therapy Puts Them in a Bind

May 9, 2018

(STAT News) – That’s the kind of discount Strauss was trying to negotiate for the siblings’ family. The two Amish girls have a mutation in the RPE65 gene, causing the specific form of retinal blindness that Spark’s therapy is designed to treat. There is no way the parents would get Luxturna for only one of them, while letting the other’s vision fade even further. But asking their congregation for $850,000 would already be a stretch; asking for $1.7 million would be unimaginable. The community just doesn’t have that kind of cash lying around.

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