Advocating for Children with Severe Food Allergies
July 26, 2013
Eosinophilic Gastrointestinal Disorders (“EGIDs”) are a severe form of gastrointestinal inflammation that results from food allergy. Children and adults in the U.S. are increasingly being diagnosed with this condition that unfortunately requires strict elimination diets, and many times, a life-long inability to eat foods that most of us take for granted each day, including dairy, wheat, soy, and eggs.
For children requiring such restrictive diets, pediatric gastroenterologists like me work hard to find adequate alternate sources of nutrition. For my patients with EGIDs, I often prescribe special “elemental formulas” as a treatment to both heal the intestinal inflammation and prevent further harm. These formulas are completely allergen-free while meeting 100% of a child’s nutritional needs.
However, in the state of Washington, most insurance carriers do not cover the costs of these formulas (with the exception being occasional coverage when administered through a feeding tube), which can be quite expensive, ranging from approximately $1000-$1500 per month, per child. (This cost is approximately the cost of an additional mortgage payment per month for many of these families.) The excuse that several insurance carriers cite,when denying coverage, is that these formulas are merely “nutritional supplements”, ignoring the fact that in reality, these formulas are “medical food” and often the sole source of nutrition for the patient with a severe EGID.
Recently, I was given the opportunity to testify at a “Sunrise Review” panel (http://1.usa.gov/1aUIfHP) in Olympia before a panel of employees of the Department of Health (DOH) to help educate them about EGIDs and provide testimony to help convince our state legislature to pass a bill that will mandate state-wide insurance coverage for elemental formulas for patients who suffer from EGIDs, regardless of route of administration (i.e. oral ingestion vs. via feeding tube).
Following my testimony, a group of local families gave public comment about their own personal, frustrating experiences, dealing with insurance companies denying coverage.
After reviewing our testimony, and allowing ample time for additional written comments, the DOH panel will eventually send their written summary of recommendations to the Secretary of Health, who will then send a final report to the state legislature, where the bill will be voted upon towards the end of this year.
You can read the bill in its entirety here: http://1.usa.gov/19eC1DQ
I felt privileged to speak as a pediatric specialist from Swedish, where we all strive to not only provide state-of-the-art, compassionate care for all of our patients, but also to be passionate advocates for the littlest of patients, who often can’t speak for themselves.