Two weeks, Scott and Sarah Aurit of Omaha were on Spirit Mornings to share their story of faith and their family’s struggle with a rare children’s digestive disorder (see the previous blog). At the time, they were working on getting a legislative bill passed that would require insurance companies to help pay for the coverage of the specialized formula the three Aurit children and others must take for nutrition.
It’s been a couple weeks of highs and lows for the Aurits, but yesterday, Nebraska lawmakers finally advanced the bill, which also included mandating insurance coverage of intensive autism therapy and oral cancer drugs. The measure won first-round approval Wednesday after several failed attempts to attach it to other bills in the final days of this year’s session.
The proposals eventually were amended into Legislative bill 254 after its original contents were removed.
“It felt like we were witnessing a miracle yesterday to see that the bill passed with a 41-0 vote! Praise, God!” Sarah Aurit said. “It was inspiring to watch the senators come together and come up with another plan in an effort to help the sick and the young.”
The formula proposal initially was an effort to require insurance coverage of specialized formulas, but supporters compromised on legislation mandating the state to pay for the formula for children who take it orally. The cost would be about $250,000 per year.
Currently, Nebraska’s Medicaid program covers the formula for people with feeding tubes. And the Women, Infants and Children program covers it for low-income children who take it orally. But there are few coverage options for others who take it orally.
For Scott and Sarah Aurit and their children, there’s no such thing as a “normal” meal in their Elkhorn home.
Their children – J.P., 11, Gianna, 9, and Lizzie, 7 – have a newly discovered gastrointestinal disorder called eosinophilic esophagitis, which makes it painful and harmful to eat most foods.
With the disorder, their white blood cells, which normally fight infection, identify food proteins as parasites and attack them and in turn damages the stomach. Symptoms can resemble food allergies or the flu, with severe vomiting, diarrhea, abdominal pain and insomnia.
Each Aurit child has a number of real foods they can eat. But they receive most of their nutrients through an elemental formula that’s served powdered or premixed and artificially flavored. Gianna can drink it, but J.P. and Lizzie take the formula through feeding tubes implanted in their abdomens.
The formula is necessary, and expensive.
For the Aurits, the cost of the formula is comparable to a mortgage payment … times three.
An insurance person once even suggested they legally divorce to qualify for government aid to pay for this formula.
The Aurits were on Spirit Mornings last week talking about their effort with other Nebraska families to pass Legislative Bill 397, which would allow coverage of the formula regardless of how it’s consumed. Currently, some insurers will only cover the formula if it’s tube fed, not orally fed.
Discovering the disease
As a baby, J.P. had several food allergies – and that’s what doctors initially said they were … food allergies. It wasn’t until they want to a specialist at Children’s Hospital in Omaha that J.P. was diagnosed with EE.
When Gianna was born a few years later, she seemed healthy, so Scott and Sarah didn’t have her tested. Lizzie, however, had immediate food aversions – by far the worst of the children – but she couldn’t be tested until she was two-year-old. After testing positive for the disease, Gianna was tested, too. And shockingly the results were the same.
The disease is rare to begin with so to have it with all three children is extremely rare, said Sarah, who also has a lesser-severe form of EE.
She takes steriods to alleviate her symptoms.
Eventually the family began receiving care from the Cincinnati Children’s Hospital, and pulled out food from the children’s diets. But nothing helped. So the doctors recommended the children stop eating all food, which was very devastating, Sarah said.
“I mean, how do you tell a five-year-old that they are no longer able to eat?” she said.
That’s when the kids transitioned their nutrition to this elemental formula.
That’s their baseline, Sarah said, the building block. Each child tries one food at a time after every three foods receives a scope to make sure no damage has been done internally, she said.
Scott and Sarah said they initially hid food and not eat in front of the kids, but stopped because they didn’t want their kids to be afraid of food. Now each child can eat certain foods, and Sarah has learned to be creative when it comes to cooking, the family can enjoy dinner together.
“We’ve made a lot of progress,” Sarah said.
Living with the disease
In many ways, the Aurit kids are like most kids.
They love sports, Gianna likes to write songs, and J.P loves legos.
But in many ways, their disease also sets them apart.
Sarah said her kids sometimes feel left out because they can’t eat the birthday treats their classmates bring in at Fire Ridge Elementary in Elkhorn or the snacks served after a sporting game.
Even at Mass, it can be an issue, she said. J.P. and Gianna, who both have received first Communion, aren’t able to consume the hosts. Instead they receive the consecrated wine, which isn’t always available at every Mass.
But the Aurit kids still get to participate in fun activities.
On Halloween, for instance, the kids went trick-or-treating. But instead of eating their candy, their parents bought it from them and took the kids toy shopping with the money they earned. Sarah gave the candy to local dentist who shipped it to soldiers overseas.
Two years ago the Aurits took their first big family vacation. They chose Disney World specifically because Disney parks accommodate people with food allergies, Sarah said. Before they left for Florida, she sent the park a list of all the foods her kids could eat.
Turning to faith
For Sarah, the hardest part of all of this is watching her children suffer physically, mentally, emotionally and sometimes even spiritually.
“It rips my heart out to see them in pain or vomiting, or feeling left out from activities at school and the holidays,” she said.
Dragging them to medical appointments, getting blood draws, approving painful medical procedures and not having an end point to shoot for make it all very difficult as a parent, she said.
The Aurits, members of St. Wenceslaus Parish in Omaha, said they have a strong support system of friends, family and others who live with this disease – some worse off than them. But they rely on their faith to more than anything else.
“I honestly don't know where we would be without our faith,” Sarah said. “We have hit some really dark spots … but in those moments, God is so tangible.”
She said she sees it as an honor to be able to join her family’s sufferings with Christ's.
“We do it imperfectly, but there is meaning attached to what we go through,” she said.
She said she thinks perhaps her family is being called to a radical form of fasting.
“I know we can use it for good,” Sarah said. “I think it’s going to be a blessing in the long run.”
The Aurits said they are grateful to have negotiated some time-limited coverage through Medicaid for Gianna and J.P. because of their feeding tubes. They now, however, are in the middle of a “perfect storm” where they fear losing all avenues of access, Sarah said.
That’s why for the last couple of years the family has worked to have legislation passed requiring insurance companies to cover the elemental formula.
Currently there are 16 other states that have passed similar laws to what the Aurits want to do in Nebraska. They’re working with many parents throughout the country to garner support for Legislative Bill 397 and share information.
“This isn’t a right or left issue; this is a medical issue and it’s a response to the disease,” Scott said. “This is a formula that is prescribed by a doctor, obtained at a pharmacy through that prescription and you have to be under the care of physician throughout this process, and those items are included in the bill, too.”
The Aurits learned Wednesday that the Banking and Insurance Committee will vote on the bill April 1.
They’re asking people to pray and to contact the committee members and ask for a vote and for the support for this to go to the full legislature, Scott said. Then they may attach the bill to a few other bills and let the full legislature vote on it, he said.
“We’re really in the crunch zone here. We’ve got two weeks left to move this process through,” Scott said.
Even though a legislative vote looks promising right now, they understand things might not go in their favor. Sarah said if that happens, her family will be OK. She’s more worried about the other families who are “hanging on by a thread.”
“We know families who have lost their homes, filed bankruptcy, lost everything because this formula is just so expensive,” Sarah said.
Others get their formula in unsafe ways by buying it off ebay or purchasing open containers, or have a child get a feeding tube placed just so their insurance company will cover the costs, she said. That involves surgery, it’s expensive and complications are involved.
“People are so desperate,” she said. “There’s definitely a need there.”
Want to help?
The Aurits hope people will contact members of the Nebraska Banking, Commerce and Insurance Committee and encourage them to support the LB397.
Nebraska Banking, Commerce, and Insurance Committee
• Sen. Mike Gloor, Chairperson
Phone: (402) 471-2617
• Sen. Kathy Campbell
Phone: (402) 471-2731
• Sen. Tom Carlson
Phone: (402) 471-2732
• Sen. Mark Christensen
Phone: (402) 471-2805
• Sen. Tommy Garrett
Phone: (402) 471-2627
• Sen. Sara Howard
Phone: (402) 471-2723
• Sen. Pete Pirsch
Phone: (402) 471-2621
• Sen. Paul Schumacher
Phone: (402) 471-2715
Blogged by Lisa Maxson, senior writer/reporter.