Cost Puts Miracle Drug Out of Reach for Dying Infants

Infants born with spinal muscular atrophy, a rare genetic disease, slowly become unable to move, swallow or breathe. Many die before their second birthday. Spinraza, which has been called a miracle drug, was approved late last year but costs $125,000 per dose. Now, a dozen practitioners from top medical institutions around the country have teamed up to discuss their concerns about Spinraza in the hope that the drug maker, Biogen, will be able to lower the drug’s cost and that insurers will cover it as fairly as possible. Spinraza’s approval by the Food and Drug Administration in December 2016 was...

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