One of the objectives of Georgia PKU Connect is to support advocacy efforts on behalf of the PKU community. Often these efforts are in conjunction with other organizations, particularly the National PKU Alliance and National PKU News. This year, PKU organizations across the U.S. are focused on passing the Medical Nutrition Equity Act (MNEA).
The MNEA would require ALL insurance plans in the U.S. to cover the medical nutrition required to treat PKU and other inherited metabolic disorders – regardless of age, employer, or where you live.
Without treatment, PKU affects the brain and causes intellectual and developmental disabilities, seizures, mood disorders, and other devastating health consequences. We need your help!
Please help now by asking your Members of Congress to be original co-sponsors of the Medical Nutrition Equity Act of 2021.
No advocacy experience? No problem! Your personal story and why YOU want the MNEA passed is most important. 4 simple steps to making a difference!:
- Call your legislator’s D.C. offices and ask for the name and email address of their Health Legislative Assistant (HLA). If for any reason you can’t get through to the D.C. office, call their local office.
- Send each HLA an email. Let them know why you need their help. See if you can setup time to talk over the phone or on Zoom/Google Meet/etc.
- When you connect with them (over email, phone, or online), simply share why this legislation is important to you or your loved one. For an online meeting, having a can/packet/or container of medical formula to show them is a great idea!
- Ask if the legislator will cosponsor the MNEA. Let them know how much it would mean to you. Follow up often until they say yes!
What else is good to know?
- To sign-on, their offices can contact the Health Legislative Assistant for any of the MNEA lead sponsors: Representative Jim McGovern, Representative Jaime Herrera Beutler, Senator Bob Casey, and Senator Joni Ernst.
- The MNEA is bipartisan in the U.S. House and Senate and both bills are identical (that’s good!). Bill numbers will be available in early June 2021 when the MNEA is officially re-introduced. Members of Congress in both the House and Senate can sign on beforehand as original co-sponsors.
- Do you have friends and family in other states? Ask them to contact their Members of Congress too.
Anything else that would help pass the MNEA? Yes!
Share Your Story on the NutritionEquity.org Website. Doing so will make it easy for leaders of the National PKU Alliance, National PKU News, and Georgia PKU Connect to share a lot of patient stories with legislations at one time. Legislators want to know people in their states and districts care about the MNEA.
Advocacy Quick Links, Documents, and News:
IEM/Inherited Metabolic Disorder MNEA Fact Sheet for Members of Congress (great to share with congressional office staff/HLAs)
Patients & Providers for Medical Nutrition Equity (Coalition of National Organization Supporting the MNEA, online patient stories, and bill information)
National PKU Alliance Advocacy Page
Members of Congress who co-sponsored the MNEA during the last session of Congress
Medical Nutrition Equity Act Lead Sponsors Dear Colleague Letter (2019)
Latest U.S. Senate Phenylketonuria Awareness Day Resolution
Grassley is Original Co-Sponsor of Medical Nutrition Equity Act (2017)
American College of Medical Genetics (ACMG) Efforts Lead to American Medical Association’s Support of Health Coverage for Medical Food Products