Medical Nutrition Equity Act – Action Needed!

The Medical Nutrition Equity Act (H.R. 2587 and S. 1194) is bipartisan legislation introduced to Congress in this spring of 2017. It would require all private and public insurance plans to provide coverage of medical foods for both children and adults Inborn Errors of Metabolism and other certain digestive disorders. This includes elemental formula that is prescribed to treat eosinophilic-gastrointestinal diseases. Links to bill appear below.

To better support this important legislation, patient advocacy organizations, including APFED, are working collaboratively with one another and with professional societies such as the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

The Medical Nutrition Equity Act (MNEA) was introduced in Congress in May 2017. Similar legislation had been previously introduced in years’ past, but did not pass.

Banking off the success of last year’s passage of legislation to expand medical foods coverage for TRICARE recipients, we are optimistic that the MNEA of 2017 is primed for success now more than ever!


Legislative Call to Action:
We Need YOUR Help to Encourage More Congressional Co-Sponsors

We need more members of Congress to support the Medical Nutrition Equity Act (H.R. 2587 and S. 1194) by signing on as a co-sponsor.

1. Arrange a meeting or a phone call with your two U.S. Senators and U.S. House Representative (or their health legislative assistant). Senators and Representatives are in their offices in their home state throughout the year. You may contact their office staff to schedule an appointment for a local meeting. You may find contact information on https://www.usa.gov/elected-officials. If you must leave a voice mail, keep your message brief but share the information below. Leave your name and contact information, as well. If you cannot participate in a meeting or a phone call, you are encouraged to write your Congressman and share a 1-page story that underscores challenges you have had with insurance denial of coverage, out of pocket expenses related to purchase of elemental formula, and/or impact/hardships that lack of coverage has caused you or your family. Include a photograph of you or your child or your family. Having that personal element will help your story be remembered.


2. Introduce yourself, share where you live, and tell them the reason for your call is the Medical Nutrition Equity Act (H.R. 2587 and S. 1194), a bill that is sponsored in the Senate by Sen. Bob Casey and co-sponsored by Sen. Chuck Grassley, and sponsored in the House by Reps. John Delaney and Jamie Herrera Beutler.3. Explain you are visiting/calling on behalf of yourself/family/loved one who is affected by an eosinophilic disorder and urge their support of the Medical Nutrition Equity Act (H.R. 2587 and S. 1194) and sign on as an original co-sponsor. Tell them that this legislation would provide public and private insurance coverage of medical foods that are prescribed to treat conditions such as eosinophilic gastrointestinal diseases (if you are a formula user and have a personal story to share that briefly explains why coverage is important to you, share it!).

Talking points to share:

  • Eosinophilic gastrointestinal diseases (EGIDs) are chronic illnesses that can affect children and adults.
    Currently, there no FDA-approved therapy. Symptoms are often treated with steroids that prescribed off-label and dietary therapy, which involves removing trigger foods from the diet. In some cases, the diet becomes so restricted that special amino acid formula (a medical food) must be supplied for either partial or sole nutrition.
    Families in the EGID patient community have report paying as much as $1,200+ out-of-pocket for a 1-month supply of prescribed formula.
  • Twenty currently states have mandates for insurance coverage of medical foods.
    The  National Defense Authorization Act (S.2943) passed last year, which included language to improve the coverage of medical foods such as elemental formula for TRICARE recipients.

3. Thank them for their time and ask if you may have their email address so that you may send a follow up.


4. Send a message a few days later thanking the assistant again for their time and reminding them of how important the legislation is to your family. Ask again if the Senator or Representative will sign-on a cosponsor and support the Medical Nutrition Equity Act (H.R. 2587 and S. 1194). Include links to these resources:

Press Release: Grassley is Original Co-sponsor of Medical Nutrition Equity Act
MNEA – Senate Bill: S.1194 Medical Nutrition Equity Act of 2017
MNEA – House Bill: H.R. 2587 Medical Nutrition Equity Act of 2017
Summary of Consensus Guidelines for Diagnosis and Management of Eosinophilic Esophagitis in the U.S.