For Sarah and Scott Aurit and their three children, there is no such thing as a normal meal at their Omaha home.
That’s because the children — J.P., 10; Gianna, 8; and Elizabeth, 6 — suffer from eosinophilic gastrointestinal disorder and rely on a synthetic amino acid-based elemental formula as their primary source of nutrition. It costs $3,000 a month for all three.Eosinophilic gastrointestinal disorders are chronic digestive system disorders in which eosinophils (white blood cells) are found in higher than normal amounts in the digestive tract. Eosinophils normally are associated with fighting parasitic infections. But in people with the disorder, the eosinophils respond to food and flood areas of the gastrointestinal tract, releasing toxins that cause tissue damage.
Such disorders typically fall into one of three types, characterized by inflammation of the esophagus, stomach or large intestine. Symptoms include abdominal pain, diarrhea, nausea, severe vomiting and difficulty swallowing.
Many insurance companies will pay for the formula only if the patient is diagnosed with a metabolic disorder or if it is administered via feeding tube instead of in the less-expensive drinkable version.
“It is hard enough to tell your children they are no longer able to eat anything except sugar and ice, but the enormous financial impact of the situation made it unbearable,” Scott Aurit told Nebraska lawmakers recently at a hearing on two bills (LB218 and LB397) that would require insurance companies to pay for the formula.
“It’s shocking to me that medically necessary nutritional treatment isn’t covered by all private insurance plans in Nebraska,” said Sen. Danielle Conrad of Lincoln, who introduced LB397.
The treatment is covered by Medicaid and Women, Infants and Children supplemental nutrition program, “which creates an inequitable result for families who have private insurance,” she said.
Sen. Bill Avery of Lincoln, who introduced LB218, said his bill “provides much-needed relief for these hard-pressed families by requiring insurance coverage for these life-saving products.”
Fourteen states now require insurers to pay for amino acid-based medical foods for a variety of gastrointestinal disorders.
Lobbyist Michaela Valentin spoke against the legislation on behalf of Blue Cross and Blue Shield of Nebraska, Coventry and United Health Care.
She expressed concern that such “mandated benefits” would increase insurance costs and about how such a law would play out under health-care exchanges being set up under the new federal health care law.
“State mandates continue to apply to coverage outside of exchanges and will be spread across insureds outside the exchange,” Valentin said. “This means that individuals and small businesses outside of the exchange will bear the brunt of the cost of additional coverage mandates while the state taxpayers will pay for additional coverage inside of the exchange. States that mandate additional benefits inside exchanges must make payments to cover the additional costs for such benefits.
“It is important to mention that any state-mandated coverage is not a mandate on insurance companies,” she said. “It’s a mandate on individuals and small businesses outside of the exchange and a mandate on taxpayers to cover the additional benefit inside of the exchange.”
Dr. Marc Rothenberg of Cincinnati Children’s Hospital Medical Center sent a letter to members of the Legislature’s Banking, Commerce and Insurance Committee supporting the legislation.
He said eosinophilic gastrointestinal disorders affect just one in every 10,000 children.
“When an amino-acid formula is prescribed, it is because there are no other options for that patient,” he said. “These formulas are medically necessary, and coverage of them shouldn’t be dependent on diagnosis or delivery method.”
Sarah Aurit said she knows families who have filed for bankruptcy and lost their homes trying to pay for the formula. Other parents, she said, are “using unsafe practices like buying unopened and opened containers off of eBay and from foreign countries in a desperate move to help their kids.”
It is estimated that as many as 1,000 Nebraskans have the disorder. Steroids and elimination diets — in which foods are introduced one at a time to determine which ones are causing the disorder — are common treatments.
Approximately 75 percent of people on diets eliminating milk, eggs, nuts, fish, soy and wheat will have disease remission. And some 98 percent of those diagnosed with eosinophilic disease will reach remission with the FDA-approved formula.
“There are those in our community faced with the most impossible medical decisions regarding care,” Scott Aurit said.
He said one insurance company recommended the Aurits get a divorce to allow his wife and children to qualify for government assistance.
“Some choose divorce or bankruptcy to have the state pick up the tab, since elemental formula is covered by Medicaid,” he said. “We can’t bear the thought of picking which child receives the medical food, while watching the other children go without. Now is the time for private insurance companies to cover this life-saving treatment.”
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