Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an entirely different ball game. See, Hailey is doing well; thriving in all aspects of life with much credit due to newborn metabolic screening and a quick diagnosis of PKU. Because we were able to treat Hailey so quickly (with special formula that does not have any phenylalanine), she may have escaped brain damage. However, this formula and other medical foods are INCREDIBLY expensive. Our insurance does not cover any of it. Right now we are in the early stages of Hailey’s life, but as she grows older, she will require more phenylalanine-free foods. Having insurance coverage will ensure that Hailey continues to thrive and reduce the chance of mental instability.

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