The National PKU Alliance has been working since 2009 to help pass federal legislation to address coverage of formula and low protein modified foods. Passage of the MEDICAL NUTRITION EQUITY ACT would require all private and public insurance plans to cover formula and low protein modified 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 LOW PROTEIN MODIFIED FOODS for all CHILDREN and ADULTS with PKU.
  • Medically Necessary Foods for PKU are not addressed by the Affordable Care Act.

Advocacy News!

We are excited to announce that the Medical Nutrition Equity Act is now a bi-partisan bill! The NPKUA would like to thank Senator Bob Casey (D-PA) and Senator Chuck Grassley (R-IA) for their support as our legislative champions. Representative John Delaney (D-MD) is our lead in the House - help us find a Republican House co-sponsor!

House and Senate passes Fiscal Year 2017 National Defense Authorization Act expanding TRICARE coverage of medical foods for PKU! Thank you to everyone who helped with this important advocacy effort.  We look forward to building on this success to achieve access to treatment for all!

Take action!

Help us build support for the Medical Nutrition Equity Act! 

  • Check out our Social Media Guide and make an impact on Facebook, Twitter and Instagram
  • Contact Congressional Offices via Phone and Email – View our latest Action Alert to get started

Schedule meeting with members of Congress in Washington D.C. during our May lobby days! NPKUA Board Members, staff and volunteers will be in Washington D.C. the afternoon of May 22nd and all day May 23rd to rally support for the MNEA. Even if you are not able to join us in D.C., a representative from the NPKUA can meet with your U.S. Representative and two U. S. Senators on your behalf.

Phone Script for scheduling a Washington D.C. meeting with your U.S. Representative

Phone Script for scheduling a Washington D.C. meeting with your U.S. Senators

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 to talk with them about PKU and why coverage of physician prescribed medical foods - medical formulas and low protein modified foods is so important. 

Phone script for scheduling an in-district meeting with your U.S. Representatives

Phone script for scheduling an in-district meeting with your U.S. Senators


Look Up Your Legislator Tool:

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. To schedule a DC or local in-district meeting, call the D.C. office and ask for the scheduler.  To discuss PKU and medical foods coverage over the phone, ask to speak with the health legislative assistant (HLA).

Important Documents To Share With Congressional Members and Staff:

MNEA Informational Flyer

Summary of Medical and Dietary Guidelines for the Treatment of PKU

U.S. Senate PKU Awareness Resolution (S. Res 627)

American Medical Association (AMA) Resolution 122 – Health Coverage for Nutritional Products for Inborn Errors of Metabolism

Additional Resources and Information:

Medical Nutrition Equity Act - Action Alert with Talking Points

General Tips On How To Contact Congress

ACMG Efforts Lead to AMA’s Support of Health Coverage for Medical Food Products

GMDI Position Statement on Medical Foods

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