Insurance reverses decision, will pay for toddler’s $2 million drug

Drug would stop SMA progression
Jackson Schultheis has spinal muscular atrophy and needs a $2 million drug to stop its...
Jackson Schultheis has spinal muscular atrophy and needs a $2 million drug to stop its progression.
Updated: Jul. 30, 2019 at 6:51 PM EDT
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EVANSVILLE, Ind. (WFIE) - There is good news about a story we first shared Monday on 14 News.

The insurance for 19-month-old Jackson Schultheis has reversed their decision and will pay for a $2 million dollar drug to help him.

As we told you Monday, Schultheis was diagnosed with a chronic genetic disease at 11-months-old. There’s a therapy out there that can help, but time is running out.

Jackson is battling for his life. He was diagnosed with Spinal Muscular Atropy just before his first birthday. SMA is a chronic genetic disease that affects motor skills like walking, eating and breathing.

Jackson Schultheis has spinal muscular atrophy and needs a $2 million drug to stop it's...
Jackson Schultheis has spinal muscular atrophy and needs a $2 million drug to stop it's progression.

“We’re a good team, but it’s hard. It’s hard," Jacob Schultheis, Jackson’s father said. "But, we’re just going to keep on doing whatever for him. Like anyone would for their child.”

Elissa and Jacob, Jackson’s parents, shared that their son was born right before newborn screening was required in Indiana. Testing would have shown that Jackson had SMA long before he was diagnosed.

Now, a new gene therapy called Zolgensma would stop the progression of Jackson’s disease and could help him live a better life.

“It would be his best bet at having his longest life expectancy," Elissa said. "Having the best chance at a promising quality of life like you or I would.”

However, the $2 million price tag is tough to swallow, especially for their insurance provider, Anthem. After two denials, Anthem called the family Monday to respond to their second appeal, but it was another no.

To make matters worse, the drug is only available to children under two-years-old, so the clock is ticking for the 19-month-old Jackson.

“It’s so defeating," Elissa said. "And let alone your child has the awful disease and it’s impacting us and him more importantly, so much. And all we’re wanting is to give him his treatments and have the best chance at life and because of his age, he’s not worth it to Anthem, and that’s what breaks my heart.”

Jackson’s parents continue to do everything they can for their little boy. They started a Go Fund Me account to try and raise the funds on their own.

NBC Nightly News also did a story on other families getting denied the treatment.

[RELATED: Hurry up and wait: Doctors say insurers increasingly interfere with care]

Anthem Insurance responded to our original story with this statement:

“We recognize the severity of severe spinal muscular atrophy and we empathize with the children who have SMA, as well as their families. Anthem is committed to helping ensure that our members have access to safe, effective, evidence-based treatments that improve health outcomes. In reviewing the medical literature, Anthem’s Medical Policy & Technology Assessment Committee, a majority of whom are external physicians, determined that Zolgensma is medically necessary provided all criteria are met. The medical policy is available here. Based on the severity of this disease, we are actively in discussion with relevant experts and will continue to review our existing medical policy on coverage criteria for Zolgensma. Anthem covers Zolgensma for members in our individual and fully-insured employer-sponsored health plans who meet the medical policy criteria.”

Again, the decision has been reversed, and Anthem will now pay for the drug. We will share a follow up with the family soon.

Here is our original story, before the reversal was announced:

Insurance denies child $2 million drug

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