Families Of Children With Rare Eating Diseases Band Together Over State Bill

Banking, Committee, and Insurance Commission Members


Lego's cover 11 year-old J.P. Aurit's bedroom. It's not unusual for a kid his age, but it's what the Lego's mean that is so important.

They are a trade: Lego's for J.P. drinking his medical formula for the week.

Scott Aurit is J.P.'s dad, he pulls out one of the formula boxes to explain, "They look like a juice box even though they are medical formula. If he would drink them for a week, he would get a five dollar Lego toy."

J.P. and his sisters, Gianna and Lizzie, all suffer from the rare disease eosinophilic esophagitis. It's an inflammatory condition primarily that may be caused by an food allergy.

For these three, it makes them react to most foods.

Each one of their children was diagnosed with the disease over time. At a point for two of them, their mother Sarah Aurit said doctors "recommended removing all food, which was a very devastating day."

The Aurit family had to turn to elemental formula instead of regular food for their children.

On a happy note, the formula works great. But it's expensive, and insurance coverage comes with issues.

"Through insurance, the coverage is completely inconsistent through how it is covered," said Scott.

For example, some insurers will cover the formula if it's tube fed, but not if it's orally fed. The Aurit family, along with others, are trying to get a bill through Nebraska legislature that would allow coverage "regardless of delivery method" for the formula consumption. The bill is LB 397.

"We've received the co-sponsorship of Senator Avery and other Senators," said Sarah.

But it's currently stalled in the Nebraska Banking, Commerce and Insurance Committee.

Still, the family hopes the bill will at least get to a vote.

"You know this is definitely worth the fight, even if it only helps a handful of people," said Sarah.

To see the bill, click the LB 397 link.

To contact members of the Banking, Commerce and Insurance Committee, see box on the right.

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