MEDICAL FOODS EQUITY ACT 
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 two Congressional Sessions and has recently been introduced into the House of Representatives in the current 113th session. The bill number is H.R. 3665. The lead House sponsor is Representative John Delaney (MD). There are also four original co-sponsors: Polis (CO), Goodlatte (VA), Johnson (GA), and Moore (WI).

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.

MFEA Update
We are pleased to announce that the MFEA has been introduced into the House of Representatives in the 113th Congressional Session.  

We need everyone to contact or meet with their House Representatives 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.

Take Action!

Lobby with the NPKUA!
We are pleased to invite you to lobby with us on March 3 and 4, 2014 for the Medical Foods Equity Act (MFEA) in Washington, D.C.! 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. 

The lobbying will take place on both Monday, March 3 and Tuesday, March 4. Volunteers will be paired with seasoned advocates for the lobbying appointments.If you are interested in joining our efforts for one or both days, please contact Amy Oliver at amy@go-ipad.org for more information and materials. 

Make an Appointment With Your Representative in D.C. 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.

Can't make it to D.C.? Make an appointment with your Representative and an NPKUA volunteer will attend in D.C.! 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.