By: Jenn Schanz
Dinner at the Muehling's has never been routine.
That's because 16–year–old Justin has a rare allergy, making anything other than a special formula toxic.
The Muehling's get creative; he drinks it out of a sports bottle, and sometimes they freeze it to dull the taste, which isn't pleasant.
They even have a separate kitchen area dedicated to preparing and storing the formula, which isn't cheap either. At $50 a can, they spend $25,000 a year on it.
And because it's not given through a feeding tube, insurance won't help.
"We don't understand, really, why this isn't a covered service. How much more medically necessary could it be because he would die without it," says Justin's mom, Linda Muehling.
tThe Muehling's say they're lucky, they get a special waiver through Mr. Muehling's job, which helps.
But for the less than 1 percent of families affected, it's a financial detriment.
"These families are working hard in the private sector, they're paying taxes, they have private insurance. They're doing everything right," says Sen. Danielle Conrad of Lincoln.
She introduced a LB 397 in the legislature last session, asking for private insurance companies to take on the formula costs, no matter how it's delivered.
But so far, it's stuck in committee.
"We're seeing politics at it's worst today," says Conrad.
Many families, like the Muehlings, opt against the feeding tube for quality of life purposes. For them, the big concern comes when Justin has to pay for the formula.
Linda says "...when he graduates from college and gets his first job, we're really concerned about the next step, which is how does he pay for this formula as a young adult?"
14 states have already adopted similar bills, and it was recently passed unanimously in the house in Washington state.
If signed by their governor, Washington will be the 15th.
Conrad says because the condition is so rare, in most cases, costs to insurance companies are minimal.
To read the bill, follow this link: http://openstates.org/ne/bills/103/LB397/documents/NED00021758/