April, Age 17

My daughter has EoE allergies and IgE allergies and is already a tiny girl. At 17 yrs she only weighs 100lb. We are still trying to figure out all of her triggers, which is a long process. We have so far found her EoE allergies to be dairy, soy, corn, nitrates/nitrites, and environmental triggers and her IgE triggers to be animal protein, wheat, and fresh fruits and vegetables. When you have to take out dairy, soy, gluten, fish, peanuts, shellfish, tree nuts, eggs, nitrates/nitrites, large amounts of animal protein, and fresh fruits and vegetables it makes getting all the nutrients in her near impossible. When she has a flare up, she is unable to eat because of how painful the flare ups are. When she is sick or having flare ups she will lose 5lbs a week, and when you are starting at 100lbs you can’t afford to lose any. After she is finally able to eat it takes months to put that weight back on partly because she doesn’t easily gain weight and partly because her stomach has shrunk to where she can only eat a few bites at a time. With the medical nutrition even during those flare ups she can drink them and get the calories and nutrition she needs to survive. But unfortunately my family can’t afford to pay the $1000/month for the formula that she requires. You assume that when you pay $2000/month for insurance that they would cover medically necessary items for you and your family, and for them to be able to sit in a room and deny medically necessary items without really knowing what people are medically needing since they are not the patients doctors is outrageous and needs to be changed. I have really good insurance but they say unless she is on a GI tube her medical foods are not covered.

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