For all of us impacted by PKU, one of the most significant issue we face is managing the cost of medical foods (formula and other special dietary products) necessary to properly maintain the diet for life.
Right now, each of us have a great opportunity to make a difference long term. Next week, a number of people from NPKUA and from our very own Georgia PKU Connect will be in Washington lobbying Congress to support the Medical Nutrition Equity Act (MNEA).
What is the MNEA?
The Medical Nutrition Equity Act would ensure that public and private insurance covers medically necessary foods – medical formulas and low protein modified foods – required by children and adults with PKU and other inborn errors of metabolism.
What’s at stake?
If passed, this bill will provide long-term, nationwide support for families affected by PKU. Though still in the early stages, by lobbying our congresspersons now, we greatly increase our chances of the bill receiving the attention it deserves. While our representatives are in Washington, contact your Congresspersons to lend your support. The more voices they hear from, the more powerful our impact will be.
What can I do?
- Call your Senator’s and Representative’s offices and ask to speak with the health legislative assistant – If you are transferred to voicemail, leave a brief message – include your name and number, so they can return your call. The numbers for Georgia Senators and Representatives are at the bottom of this page
- Introduce yourself and let them know you are contacting them about the Medical Nutrition Equity Act. This bill is sponsored in the Senate by Senator Bob Casey and co-sponsored by Senator Chuck Grassley; and in the House, sponsored by Representative John Delaney and co-sponsored by Representative Jaime Herrera Beutler.
- Explain you are calling as a member of the PKU community and need your Senator and Representative to support the Medical Nutrition Equity Act.
- Let them know the Medical Nutrition Equity Act would provide public and private insurance coverage for the medically necessary treatment for PKU – medical formulas and low protein modified foods, which are required to prevent severe disability.
- Share your personal connection to PKU and why treatment coverage is so important. (For help with talking points click here.)
- Before finishing up the call, let them know how much you appreciate their time. Ask for their email address, so you can follow up with them in the next couple of days.
- Follow up: Shortly after your phone conversation (within a week), send the legislative assistant a kind message thanking them again for speaking with you. Let them know how important the Medical Nutrition Equity Act is to you/your family and ask if your Senator/Representative will support the bill. Include links to the documents listed below.
Thank you for your advocacy efforts! Together we can make a difference for PKU!
For more information and assistance, check out the links below:
- Phone numbers of Congresspersons:
|2||Bishop Jr., Sanford D.||202-225-3631|
|3||Ferguson, A. Drew||202-225-5901|
|4||Johnson, Henry C. "Hank" Jr.||202-225-1605|
|6||Price, Tom -- Vacancy||202-225-4501|
- Links to send to Congresspersons:
Why Medical Nutrition Equity Act?
Summary of Medical and Dietary Guidelines for the Treatment of PKU
U.S. Senate PKU Awareness Resolution (S. Res 627)
American Medical Association (AMA) Resolution 122 – Health Coverage for Nutritional Products for Inborn Errors of Metabolism
GMDI Position Statement on Medical Foods
- Other helpful resources: