“Don’t Give Up” – costly gene therapy could save infant’s life

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(WTHR/NBC News)  An Indiana infant has received a multi-million dollar gene therapy treatment that could save his life.

4-month-old Anthony Schmitz has spent his entire life on a ventilator in intensive care at Riley Hospital for Children.  He suffers from Spinal Muscular Atrophy.

Zolgensma is a prescription gene therapy that costs $2.1 million for the one-time dose.

Indiana Medicaid first rejected the treatment for Schmitz because he was on a ventilator but gave approval on appeal.

“Early diagnosis is key and don’t give up,” says Louise Johnson, Schmitz’s mother. “It’s not a death sentence, so just keep fighting. It’s a baby. Keep fighting.”

“I think this was really a group decision that said, ‘Yeah, medically this made sense for this child.’ So, the cost kind of fell by the wayside,” says pediatric neurologist Dr. Larry Walsh.

Read more: http://bit.ly/36YYbuG

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