Anthem changes policy for children with SMA after agreeing to cover toddler’s $2m drug

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:

We recognize the severity of severe spinal muscular atrophy and the devastating effects it has on the lives and experiences of people with SMA and 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. Members have the ability to appeal medical policy decisions. The medical policy is available here. Criteria are aligned with the ages, medical conditions and other clinical characteristics of infants evaluated in clinical trials for whom there is published medical evidence to assess safety and efficacy; certain children up to 2 years old meet medical policy criteria if there is evidence of healthy motor neurons, based on previous treatment with Spinraza. Infants under six months old do not need previous experience with Spinraza.Anthem covers Zolgensma for members in our individual and fully-insured employer-sponsored health plans who meet the medical policy criteria. Anthem administers the benefits for self-funded groups but the groups make their own decision as to whether to include gene replacement coverage in their plans. The self-funded groups that cover gene replacement therapy benefits follow Anthem medical policy on Zolgensma.

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:

“Respecting the privacy of my constituents, I do not comment directly on casework. That said, I am very happy with the outcome for this family. I believe that all stakeholders need to work together to ensure patients have access to new, life-saving treatments for rare diseases. Early intervention is critical to successfully treating diseases like SMA. It is important that newborns get the appropriate screening for diseases which is why I recently voted to support the Newborn Screening Saves Lives Reauthorization Act of 2019 which passed the House.”

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.”