Advocacy News!

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!

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 to talk with them about PKU and why coverage of physician prescribed medical foods - medical formulas and low protein modified 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!

For more information 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.

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