Mason, Age 2

Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the newborn screening. We are so grateful for the early detection that will allow Mason to live a healthy life. Although screening for PKU is mandatory, treatment is often not covered by insurance. In order to prevent permanent brain damage, Mason will have to follow a strict low protein diet. Avoiding meat, dairy, eggs, nuts, and other high protein foods. In order to do this we heavily rely on specially engineered medical food and a medical formula to replace the nutrients he misses through his strict diet. Mason’s medical formula is covered after we meet an $8,000 deductible, but we pay 100% until then and his medical food is not covered at all. The medical food and formula is the only thing keeping him from irreversible brain damage. By providing patients like Mason with coverage of medical food we are giving them the healthy lives they so deserve!

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