EVANSVILLE, Ind. (WFIE) - The family of an Evansville toddler is crying happy tears after hearing their 19-month-old son will get the drug he needs.
We first told you about Jackson Schultheis on Monday. Anthem Insurance had just called the Schultheis family to tell them their appeal had been denied, and the drug he needed wouldn’t be covered.
Then, late Tuesday, they they got a call that the decision had been reversed, and it would be covered after all.
“He said Jackson had been approved and I immediately started crying happy tears!” Elissa Schultheis, Jackson’s mom explained.
Jackson was diagnosed with the chronic genetic disease, Spinal Muscular Atropy, at 11-months-old. It affects motor skills like walking, eating and breathing.
Now, a new gene therapy called Zolgensma could stop the progression, but it costs $2 million and is only available for children under the age of two.
“It’s going to be almost to normal for him and I mean we don’t know for sure a lot of things but everything pointing this way seems so positive,” Jacob said.
Anthem sent us a statement explaining their new policy:
Elissa and Jacob say their son was born just days before newborn screening was required in Indiana. Testing would have shown that Jackson had SMA long before he was diagnosed.
Congressman Larry Bucshon was one of the many lawmakers the Schultheis family reached out to as they worked to get the drug covered by their insurance.
He sent us a statement:
The couple also shared they will continue to fight for a cure for SMA.
“We love him so much and will always do our darnest to give you the best life possible, whatever that entails," Elissa said. "So anything that ever comes out to fight this disease we will always do for Jackson.”