Sawyer, Age 2

We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was officially diagnosed failure to thrive at 2 months. He was diagnosed with significant GERD at 4 months. He was diagnosed with FPIES at 5 months. We continued to pay 100% out of pocket for his formula until he was 15 months old. At that time, he was diagnosed with eosinophils esophagitis and eosinophilic gastritis. His body was unable to grow and develop because of the holes in his diet from dietary restrictions. We finally went though another appeals process with the new diagnoses (that I had to PUSH to make happen). At 16 months old insurance finally agreed to pay 80% of the cost and it was a total game changer knowing my son would get the nutrients and calorie he needed to grow and THRIVE! We have really good health insurance that covers a significant portion of my son’s neocate junior. But we fought and fought to get that coverage. And paid 100% ourselves for the first year and a half of his life, even when he was getting it through his feeding tube.

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