Take Action

The NPKUA is actively working to increase coverage for PKU medical foods (formula and 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.

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 Foods Equity Act

We need everyone to meet with their members of Congress to help us improve coverage for medical foods. Even if you currently have coverage, we need your help!  Every meeting makes a big difference and together we can change coverage for medical foods.

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Energy And Commerce Committee 

The House Energy and Commerce Committee is soliciting written comments on the current gap between known diseases and treatments like PKU.  We need our community to submit comments telling them about the gap in coverage for medical foods that are needed to treat PKU and how some of this can be solved by the passage of the Medical Foods Equity Act.

Comments can be submitted to cures@mail.house.gov until June 13, 2014.  A sample letter can be found here.

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. 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 inconsistencies and provisions at the state level.

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