Seton, Age 3

Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergic to upwards of 40 foods. Even at the current age of 3, he can only eat about 10 foods including the formula (medical nutrition) necessary for him to get the right vitamins, calcium, and protein. I breast fed him for 3 years knowing that we could not afford the life-saving formula needed to help him thrive. When I could no longer breastfeed, we weaned him onto a very expensive elemental formula. Our insurance, SSM Health, denies coverage of medical food or formula to all patients over the age of 1 regardless of their medical history.

We currently do not order enough medical nutrition that the dietician requests for our son, because we cannot afford to. I am a teacher and my husband is a paraeducator, but I still have to work two jobs to help pay for his medical nutrition (formula) and other necessary expensive food. If we had insurance coverage, our finances would be less strained. I could spend more time with my family by working less hours. My son could get the amount requested by his doctors without us having to skimp on it due to the cost. Our insurance refuses to cover formula like Neocate and Elecare past the age of 1 no matter what the reason.

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