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.

Though available without a prescription, elemental formulas such as Vivonex, Neocate and EleCare are a breed apart from the store-bought infant variety, said Gleich, who supports Moss’ bill.

“Devoid of intact food substances, namely proteins, complex carbohydrates and fats, these products only contain amino acids and simple sugars and do not provoke allergic reactions,” he explains.

Fewer than a third of those diagnosed require formula for longer than five years. It’s generally a short-term solution enabling patients to heal, slowly re-introduce foods and, through a process of elimination, determine which they can tolerate.

In many patients the disorder effects only the esophagus, making it hard to swallow. Some respond to medications such as steroids. Not Ashley, who has it in her stomach, intestines and colon.

The Orem teen has reacted violently to food nearly all her life. Even the smallest meals leave her vomiting, with persistent diarrhea or doubled over in pain.

She can now tolerate about 14 foods: a bland diet of turkey, white pork, rice and a handful of fruits and vegetables.

It took years of testing, scopes and biopsies to rule out irritable bowel syndrome and celiac and Crohn’s disease. By the time she was diagnosed, “we were desperate,” said her mom, emotionally describing how Ashley’s skin had turned gray and her hair patchy due to malnutrition.

“Sometimes I had to carry her home from school because she was too weak to walk,” Tammy said.

The feeding tube and formula were a last-ditch solution, further complicated by a job loss in the family. Ashley’s dad, Dallyn, an illustrator, had been laid off and given a severance package that included health benefits. But the insurer refused to cover the formula, and when the Zundels sued to require payment, the employer threatened to yank the severance.

Each insurance company has its own policy. Some cover oral nutrition only as part of a hospital stay.

“They’ll pay for the stomach pump, tubing and bags, but not the formula,” said Tammy Zundel. They’ll also pay to hospitalize someone who has become so nutritionally deficient they need to be fed by IV.

One night of IV feeding costs about $5,000, equivalent to a year’s worth of formula for the average ESD patient, she said.

The family dropped the lawsuit and eventually were able to sign their kids up for Medicaid, which covers the formula.

A life saver that has helped Ashley thrive and avoid frequent hospital stays, the formula has meant financial ruin for the family and an unnecessary burden on taxpayers.

“It’s not how I wanted things to be,” said Dallyn Zundel, who teaches design but has turned down more lucrative job offers in order to keep his daughter on Medicaid.

But like cooking separate meals and raising turkeys in the back yard, which supply Ashley with eggs she can digest, and lobbying for “fair treatment,” said Tammy Zundel, “You do what you need to do for your kids.”

– Kirsten Stewart (source: The Salt Lake Tribune)