One hurdle overcome in fight to get coverage of liquid meals for allergic children

Posted: July 05, 2014

The Pennsylvania House unanimously passed a bill this week extending insurance coverage of amino-acid-based liquid nutrition formulas to children with severe food allergies.

The sponsor, Rep. Daniel Truitt (R., Chester), said he hoped for Senate passage in the fall.

An estimated 450 infants and children in Pennsylvania cannot eat conventional foods because of food-protein allergies. They require the elemental liquid formulas, which must be prescribed by a physician and cost about $5,000 a year.

The formulas are covered by the state's Medical Assistance program for eligible low-income residents. Since 1996, state law has required private insurance coverage of the formulas to treat inherited metabolic disorders such as phenylketonuria.

The extension of coverage was cheered by parents, who testified in Harrisburg this spring about their struggles to get their children's rare food allergies diagnosed and treated.

Suzanne and Steve Harris of West Chester have two sons - Dean, 11, and Cole, 10 - who suffer from eosinophilic esophagitis, an allergic inflammatory condition of the esophagus that can turn eating into a torment of pain, vomiting, and choking.

"No parent would elect to take food away from their children and replace it with formula unless it was the only hope," Suzanne Harris testified. "Combining this with the stress of insurance appeals and mounting financial debt makes an already traumatic experience that much more unbearable."

Unlike metabolic disorders, severe food allergies often get better as the immune response normalizes, enabling sufferers to reintroduce food and discontinue the formula. Dean and Cole, who went on formula in late 2010, needed it for about a year.

"This formula is more than nutrition - it is medicine," Suzanne Harris said by e-mail. "For diseases like eosinophilic esophagitis, not only is elemental formula the only thing you can feed your child, but it puts the disease in remission. Very sick children, in some cases inpatient [hospitalized] children, are able to get better while consuming this formula."



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