NPR Shots

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?”

Read more here.