We spend a lot of time during PKU Awareness Month celebrating the universality of Newborn Screening in the U.S. Now it’s time to take the next step to ensure that everyone in our community can afford the necessary treatment for disorders detected through newborn screening, namely: medical nutrition. State-based laws provide scattered, unreliable insurance coverage for the food and formula required to stay healthy with PKU.

PKU News, with the National Organization for Rare Disorders (NORD), the National PKU Alliance, and many other patient groups and medical providers, have been working as the Patients & Providers for Medical Nutrition Equity to help pass the Medical Nutrition Equity Act. On June 1, representatives of more than 50 disorders that require medical nutrition will meet with our legislators and host a congressional briefing to demonstrate the need for this law.

We recognize that many of you can’t come to D.C. But now your story can be a part of this campaign, through MedicalNutritionEquityFor.us.

Submit your medical nutrition story: why you need medical foods, how much it costs, what your insurance covers (or doesn’t) and how medical nutrition coverage would change the lives of you and your family members.

We’ll share your story with Congress; each legislator will have a direct link to the stories of the constituents in his or her state and district. These personal stories will literally put names and faces to the fight for medical nutrition coverage.

We can’t do this without you. Add your voice to the fight for medical nutrition coverage today.