By Julie Appleby
Jana Gundy and Amanda Chaffin, who live within two hours of each other in Oklahoma, each have a child with the same devastating disease.
The genetic condition, spinal muscular atrophy, robs its sufferers of muscle strength, affecting their ability to sit, stand or even breathe.
With any costly new drug, it all comes down to “tough choices,” says Jack Hoadley, a health policy analyst at Georgetown University’s Health Policy Institute.
“Treating one of these patients may mean not treating 1,000 patients with some other, less expensive problem — or saying they have to raise more tax dollars,” he says. “Private insurers have the same trade-off. Do we pay for this if it will ultimately raise our premiums?”
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