Take Action

The NPKUA is actively working to increase coverage for PKU medical foods (formula and modified low protein food) at both the national and state level. Although there is a federal mandate for newborn screening at birth, there is no mandate to ensure treatment once a newborn screen comes back positive for any of the inborn errors of metabolism (including PKU). This section gives you information on coverage at the state level, our work at the federal level and how you can help us advocate for people with PKU.

Action Alert

Help us ensure medically necessary foods language is included in the final version of the Fiscal Year 2017 National Defense Authorization Act! If one or more of your congressional members is on the NDAA Conference Committee, we need you to contact their office and ask them to support the medically necessary foods language in the SENATE version of the FY 2017 NDAA. Successful passage of this important language will require TRICARE to cover medical formula and modified low protein foods for CHILDREN AND ADULTS with PKU and other inborn errors of metabolism.  

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 treatment for all!

Click here to read the full action alert with a list of committee members and details on how to take action today! Make sure your voice is heard. The process to resolve differences between the House and Senate version is already underway. 


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.

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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 modified low protein 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.

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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