(Leah Hogsten | The Salt Lake Tribune) Ashley Zundel, 13, comforts her tearful mother, Tammy, Wednesday. Ashley wouldn't be alive were it not for the special powdered formula she ingests through a feeding tube. The Orem teenager was diagnosed four years ago with eosinophilic disorder, a severe form of food allergy. She is among 1,300 in Utah who would benefit from legislation that would require insurers to cover "elemental," or amino acid formulas.

Utah family presses insurers to cover formula

Health insurance » Lawmakers resist while taxpayers pick up Medicaid tab.

By kirsten Stewart

| The Salt Lake Tribune

First Published Jan 05 2012 06:25 pm • Last Updated Jan 06 2012 07:44 am

Watching her family enjoy dinner when all that awaited her was a special hypoallergenic formula delivered through a feeding tube in her stomach was initially "horrible, unbearable," says Ashley Zundel.

Today, four years after her diagnosis with a rare food allergy known as eosinophilic gastroenteritis, the 13-year-old can abide the "tempting smells" and no longer retreats to her bedroom at suppertime. Her family avoids foods for which she has a weakness: pizza, hamburgers and baked goods.

But there’s no avoiding the expensive, milky formula, which isn’t uniformly covered by private insurance but remains a primary source of nutrition for Ashley and hundreds of Utahns like her.

For three years running Ashley’s mom, Tammy Zundel, has lobbied for legislation requiring insurers to cover the formula. Rep. Carol Spackman Moss, D-Salt Lake City, is taking another stab at a bill this year.

Past attempts have been resisted by mandate-averse Republican leaders and insurers who argue it will raise the cost of health insurance for individuals and small businesses. But this year, proponents have a different strategy.

"I used to think doing the right thing by kids was argument enough. I was naive," said Tammy Zundel, who has spent the past year trying to convince insurance executives that paying for formula will save them money.

Better disease management means fewer complications requiring hospital stays and surgeries, which insurers do cover, she said.

Nudging insurers toward voluntary coverage is preferable to changing state law, which would effect only 33 percent of all health plans sold in Utah, the individual and small group plans regulated by the state. But Moss said only a few companies "have come to the [bargaining] table," so she’s moving ahead with legislation.

Insurers say the U.S. Food and Drug Administration classifies formula as a food, not a drug. Covering food substitutes "would be similar to asking Utahns who have health insurance to pay the grocery bill of those individuals who have some type of food allergy," said Scott Thompson, a spokesman for Regence BlueCross BlueShield.

Moss argues these formulas are no mere supplement, but "medically necessary, the standard of care for the sickest of the sick."

Thirteen states, including Texas and Arizona, mandate coverage for amino acid-based elemental formulas for various diagnoses, including eosinophilic disorders, short bowel syndrome and allergies to proteins in milk.

The laws have had minimal to no financial impact, said Moss. In Ohio, a state senator predicted legislation would raise health insurance premiums by 1.6 pennies a year for the average family.

Moss is limiting her bill to eosinophilic gastrointestinal disorders (EGDs), which effect 1,375 Utahns.

EGDs are characterized by high levels of eosinophils in the throat, guts or colon. A type of white blood cell, eosinophils help the immune system fight infections and parasites, but in people like Ashley they mistake food for these invaders. Left unchecked, they attack the body and cause tissue damage.

It’s a lifelong disorder that can be easy to overlook, because it’s not well understood.

"But there’s no doubt about the diagnosis, and there’s no doubt about the effectiveness of the formula," said Gerald Gleich, an immunologist, allergist and expert on EGDs who retired from the Mayo Clinic a decade ago but logs 10-hour days treating patients at the University of Utah.

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