Advocacy News!

We are excited to announce that the Medical Nutrition Equity Act (H.R. 2587 and S. 1194) 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 in the U.S. Senate; and Representative John Delaney (D-MD) and Representative Jamie Herrera Beutler (R-WA) for leading the bill in the House!

Read a Press Release from the office of Senate co-sponsor Chuck Grassley here.

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!

Take Action today!

Now that the MNEA has been introduced we must ask Members of Congress to co-sponsor the bill.  The MNEA would require ALL insurance plans to cover medical foods – formula and low protein modified foods for PKU regardless of age. Please help fix PKU treatment coverage by asking your two U.S. Senators and Representative in the House to join as a co-sponsor of S. 1194 or H.R. 2587, the Medical Nutrition Equity Act.  Please visit the Medical Nutrition Equity Act page for details.  


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

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Medical Nutrition Equity Act (H.R. 2587 and S. 1194)

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

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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.

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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.

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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.

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