Lillian, Age 2

This is Lillian. She is almost 3 and still drinks formula because she has an eosinophilic disorder. Lillian has Eosinophilic Esophagitis. It’s a pretty rare autoimmune disorder that when she has certain foods, makes eosinophils (a type of white blood cell) attack her esophagus, making it hard to swallow. Until the past few months, she has vomited on most days. She just started sleeping through the night, and would cry with belly pain frequently. She refused most foods. Lil has been in the care of a terrific EOE team with an allergist, GI, nutritionist, and occupational therapist and after removing the top 6 food allergies and changing to an elemental formula, she is symptom-free. We go back to get another scope with a biopsy in two weeks to get her results and praying for remission. We were just able to get coverage after our insurance company assigned a case manager to discuss the correct diagnostic coding with the company and was able to see the medical necessity as described by the GI specialist.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.