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Insurer agrees to pay for $2 million drug for Colorado toddler with rare disease

GRAND JUNCTION, Colo. — An insurance company has agreed to pay for the roughly $2 million in treatment required for a 19-month-old Grand Junction girl with a rare disease.

The decision comes after a FOX31 Problem Solvers story about Maisie Forrest’s family’s fight to get the life-saving drug she needs.

Maisie was diagnosed with type 1 spinal muscular atrophy in June 2018. The genetic disorder steals the body’s abilities to use muscles, swallow, roll,  sit up — and eventually, breathe.

“It just takes one cold to kill them. We lost Maisie twice. We’ve had to resuscitate her two times so far in her life,” said Ciji Green, Maisie’s mother.

Throughout an interview last weekend, the Problem Solvers witnessed just a small portion of their daily routine, with Green doing what’s called a cough assist as well as a “suction,” which removes excess secretion from Maisie’s mouth.

“It’s pretty horrible, gruesome stuff,” Green said. “As a parent, it’s nothing that a parent should have to ever do to their kids.”

An FDA-approved treatment for children under 2 years old — called Zolgensma — stops the disease from progressing.

It would have cost Maisie’s family $2.125 million out-of-pocket for the one-time, life-saving dose.

“There’s not a million kids that have this disease. There’s like 250. And so, in order to continue to fund their research, they need to charge a high amount,” Green said.

However, on Friday, the Problem Solvers learned that a Chicago-based attorney was hired by a man named Bill Pulte, a “Twitter philanthropist” who raises money for causes like Maisie’s.

After the original story aired, Pulte reached out to the Problem Solvers, asking to get in touch with Green.

The attorney was in Grand Junction on Thursday and spoke to the insurance panel, which was reviewing Maisie’s case.

On Friday, the insurance company, Rocky Mountain Health Plans, agreed to pay for the treatment.

Green shared the news on Facebook. She says the decision was thanks to the FOX31 Problem Solvers’ story.

Editor’s Note: An earlier version of this story stated Zolgensma reversed symptoms of the disease over time. While the drug does halt the disease’s progression, it does not reverse symptoms. 

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