This is Eliot and he has PKU. With formula, low-protein foods and an incredible amount of discipline on his part, Eliot is a happy, healthy, thriving 11-year-old. He is a talented swimmer too, having achieved a Junior Olympics time standard in the 50M Backstroke! We feel very lucky that his PKU was diagnosed at birth with Newborn Screening, and that his formula is mostly covered by our employer-sponsored health insurance. However, we have to pay out of pocket for all low-protein foods. And it takes a lot of food to fuel a swimmer, things like Ener-g bread, Cambrooke “cheese” and Aproten pasta. These foods cost 4-5x that of “regular” food and can be cost prohibitive for many families. We want all patients with PKU, other inborn errors of metabolism and the many other conditions covered by MNEA to have access to lifesaving formulas and medical foods – so that ALL can live their very best lives. Formula is covered except for a monthly $100 copay after meeting $400 annual deductible. There is NO coverage of low-protein foods.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.