The National PKU Alliance has teamed up with 29 other organizations to pass the Medical Nutrition Equity Act (MNEA) by 2018! Under the leadership of the National Organization for Rare Disorders (NORD), the newly formed Patients & Providers for Medical Nutrition Equity coalition held its first meeting in November 2017. Since that time, the coalition has been busy developing info sheets for all digestive and inherited metabolic disorders covered by the bill, identifying cost documentation for the Congressional Budget Office, and meeting with members of Congress. A MNEA dedicated website is also in the works! Just last week, Patients & Providers for Medical Nutrition Equity sent an endorsement letter to our bill sponsors. You can read the letter here. Links to coalition developed materials and advocacy tools will be added to the NPKUA Medical Nutrition Equity Act page as they become available. Please visit the page often for the latest bill information and action alerts.
If passed by Congress and signed into law, the MNEA would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs to provide coverage for formulas, low protein modified foods, and prescribed vitamins for all children and adults with inborn errors of metabolism and certain digestive disorders.
Thank you for your continued support!
Reposted from NPKUA Connection Newsletter, March 2018