The National PKU Alliance has been working since 2009 to help pass federal legislation to address coverage of formula and modified low protein foods. Passage of the MEDICAL NUTRITION EQUITY ACT would require all private and public insurance plans to cover formula and modified low protein foods for CHILDREN AND ADULTS with PKU. This bill also requires  coverage of medically necessary foods for other Inborn Errors of Metabolism and certain digestive disorders. The MEDICAL NUTRITION EQUITY ACT is a collaborative effort between the NPKUA, American Academy of Pediatrics (AAP), North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), and the office of U.S. Senator Robert Casey.

Click here for an informational flyer on the MNEA.

Bill Information

Similar legislation (formerly the Medical Foods Equity Act) has been introduced in three prior Congressional Sessions. A new session started at the beginning of 2015. The NPKUA is hoping the MEDICAL NUTRITION EQUITY ACT will be introduced soon. We need your help to find U.S. Senators and House Members to rally around the legislation and agree to co-sponsor!



  • Require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children's Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans to provide coverage for FORMULA and MODIFIED LOW PROTEIN FOODS for all CHILDREN and ADULTS with PKU.
  • Medically Necessary Foods for PKU are not addressed by the Affordable Care Act.

Take Action!

Help us pass coverage legislation for TRICARE beneficiaries! Read the full action alert here for a step-by-step guide and talking points. Even if you do not have insurance coverage through TRICARE, it is critical for you to take action. Passage of legislation for TRICARE beneficiaries will help us achieve access to treatment for all! It is very important for our community to contact U.S. Representatives on the FY 2017 NDAA Conference Committee and ask them to support the medically necessary foods language in the SENATE version of the FY17 NDAA

Build support for the Medical Nutrition Equity Act! We need your help to find U.S. Senator Bob Casey a Republican co-sponsor for the Medical Nutrition Equity Act. Read the full action alert here to learn more about the MNEA and ask your U.S. Senators to sign-on as original co-sponsors!

Meet with members of Congress in local offices! U.S. Senators and Representatives return to their home states throughout the year. Contact their office staff to setup a local appointment. A face-to-face meeting is a great way talk with them about PKU and why coverage of physician prescribed medical foods - medical formulas and modified low protein foods is so important. Let them know about the draft Medical Nutrition Equity Act (MNEA) sponsored by Senator Bob Casey and ask for their support!

Click here to find the names and contact information for your congressional members.  It will list the D.C. contact information along with their website. Call the D.C. office and ask for the scheduler.  

Click here for a detailed House of Representatives phone script.

Click here for a detailed Senate phone script.

Click here for an informational flyer on the MNEA. Please print and bring to your meetings to leave with your congressional members.

Click here for an After Summary Visit Form to send to the NPKUA.