Our Kids are Superheroes

But They Still Need Fuel to Continue Doing Great Things

What is the MNEA?

Legislation, “. . .which will extend the coverage for medical nutrition that Congress passed in 2016 for TRICARE patients to other insured Americans who have inherited metabolic disorders/inborn errors of metabolism and other disorders on the Recommended Uniform Screening Panel, medical and surgical conditions of malabsorption, Immunoglobulin E and non-Immunoglobulin E-mediated allergies to food proteins, inflammatory or immune mediated conditions of the alimentary tract, and other diseases or conditions determined appropriate by the Secretary of Health and Human Services.” — From the Patients & Providers for Medical Nutrition Equity Coalition

Sponsors of the MNEA

This legislation is bipartisan in its support. Are your congresspersons on the list? Reach out to your leaders and tell them why this legislation MATTERS to all of our families!

How Can I Get Involved?

Even if you can’t travel to the Hill, you can make your family’s voice heard! Share your story online or mail in a letter to your representative. Be the voice for your family and others like yours! 

Help Us Support the Medical Nutrition Equity Act (S-1194, HB-2587)

The Medical Nutrition Equity Act (S-1194, HB-2587) is a piece of legislation currently being championed by medical professionals and patient advocacy groups that aims to improve coverage of medical nutrition (such as elemental formula) for individuals affected by a variety of conditions. Included in this list of conditions addressed is FPIES. To learn more about this legislation and how you can advocate for its passage, visit Patients & Providers for Medical Nutrition Equity

FPIES (Food Protein-Induced Enterocolitis Syndrome) by its very nature is a diagnosis that restricts the diets of affected individuals, sometimes in significant ways. For many individuals affected by FPIES, medical nutrition, by itself or in combination with limited safe foods, is the only way for them to safely access appropriate nutrition. Without adequate nutrition, individuals struggle to grow and develop appropriately, both cognitively and physically.

Currently, access to medical nutrition for individuals affected by FPIES is difficult to obtain, at best. Due to restrictions from insurance companies and other programs, many families are paying the entire retail cost of medical nutrition, which can cause significant financial challenges to these families. Coupled with the high cost of medical care and often specialty foods required for proper management of this diagnosis, the economic burden these families face is enormous. No family should have to jeopardize its financial security simply due to seeking appropriate nutrition for a child affected by a rare medical condition. Partner with us to advocate for this legislation today!

Advocacy is a Family Affair!

Every voice counts! Reach out to friends, family members and anyone else supporting your family’s journey, and encourage everyone to advocate for this legislation. All advocates can contact each of their representatives and continue to share stories about why medical nutrition is so important. Encourage them to access the links above and send in their stories today!

Page published: Jan. 16, 2019. Last Update: Jan. 17, 2019. Copyright © 2019, The FPIES Foundation