MEDICAL FOODS EQUITY ACT 
(Formerly H.R. 3665)

The National PKU Alliance has been working since 2009 to help pass the Medical Foods Equity Act in Congress. This bill would require all federal programs to cover the cost of medical foods (formula and foods modified to be low in protein) for CHILDREN AND ADULTS with PKU and other inborn errors of metabolism. This includes federal insurance programs, such as Children's Health Insurance Program, Tricare, Medicaid, Medicare and Federal Employee Health Benefit programs. Although the bill would not require coverage by private insurance companies, the NPKUA and many of our public policy partners believe that federal coverage will provide strong incentive for coverage in the private insurance marketplace.

Click here for an informational flyer on the MFEA.

Bill Information
The bill has been introduced into the last three Congressional Sessions. A new session started at the beginning of 2015. The NPKUA is currently working on getting the bill reintroduced.

The Medical Foods Equity Act would:

  • Require federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans to cover the cost of medical foods for all inborn errors of metabolism.

  • This bill is based on the recommendations of the HHS Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.

  • The Secretary of HHS would determine the yearly coverage amounts.

  • Medical Foods are not addressed by the Affordable Care Act.

Take Action!

Advocacy In-District Push!
In August, all members of Congress will be in their home districts. We want to take this opportunity to have everyone in the PKU community meet with members of Congress and encourage them to support the Medical Foods Equity Act (MFEA)! The MFEA would require all federal programs to cover the cost of medical foods (both formula and food modified to be low in protein) for children and adults with PKU and other inborn errors of metabolism. 

Make your appointment with your representative in their local offices. To find your Representative, click here. It will list the D.C. contact information along with their website. Call the D.C. office and ask for the scheduler.  A detailed phone script and meeting checklist/FAQ is available below.

Click here for a detailed phone script.

Click here for the meeting checklist and FAQ.

Click here for an informational flyer on the MFEA. Please print and bring to your meetings to leave with your Rep.

Click here for an After Summary Visit Form to send to the NPKUA.

Click here for an informational slides from an NPKUA Advocacy Webinar.

Make an appointment with your Representative today! Follow the instructions in the phone script above and report the Rep's name, meeting date, time, and location to Amy Oliver at amy@go-ipad.org.

Remember you can always call your member of Congress and ask for their support. Please take 10 minutes and call your Representative today.

Click here for a detailed phone script.

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