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Movement Disorders Policy Coalition

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AfPA Digital
July 26, 2019

'Like we were being forced to gamble with our son's life': Health insurers won't pay for a $2.1 million drug for kids, and parents say they're running out of time

AfPA Digital
July 26, 2019

Jackson Schultheis was just over 6 months old when his parents noticed his legs giving out.

They didn't know it then, but the symptom was a telltale sign of a rare, inherited disease called spinal muscular atrophy that severely affects a child's muscle movement.

Read more.

Source:https://www.businessinsider.com/health-insurance-companies-deny-kids-with-sma-gene-therapy-zolgensma-2019-7

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