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!

U.S. 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!

Action Alert!

Help us build support for the Medical Nutrition Equity Act! Read the full action alert here to learn more about the MNEA and ask your U.S. Senators and U.S. Representatives to support this important legislation!

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

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.  For more information, phone scripts, and helpful documents click here.


January 2017 - Medical Foods Webinar
Click here for the slides
Click here to view the webinar


Affordable Care Act

The Affordable Care Act (ACA) was passed by Congress in 2010.  Several of the provisions of the act have already been enacted, such as: 

  • Children under the age of 19 can no longer be denied insurance for pre-existing conditions.
  • Young adults up to the age of 26 can now stay on  their parents insurance plan
  • Elimination all lifetime maximum limits

Click here to learn more

Medical Nutrition Equity Act

We need everyone to call or meet with their members of Congress to help us improve coverage for medical foods (formula and modified low protein foods). Even if you currently have coverage, we need your help!  Every conversation makes a big difference and together we can change coverage for medical foods. 

PKU Advocates are headed to Capitol Hill May 22nd and 23rd – help us from home!

  • 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

Click here to learn more  

Newborn Screening Act

The Newborn Screening Save Lives Act was originally passed by Congress in 2008.  The bill established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state.  The original bill had funds appropriated to carry out the intent of the act.

Click here to learn more 

State Coverage

Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods (formula and low protein modified foods). Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health department programs.

Click here to learn more

Your Legislators

The PKU community is encouraged to contact their individual federal representatives to personally advocate for national PKU favorable legislation, closing the gaps in access to medically necessary treatment.

Click here to learn more