The Medical Nutrition Equity Act (H.R. 2587 and S. 1194), also known as MNEA, is legislation introduced to Congress in May 2017. It would require insurance plans to provide coverage of medical foods for both children and adults diagnosed with inborn errors of metabolism and other certain digestive disorders. Elemental formula prescribed to treat eosinophilic gastrointestinal diseases is included.
To support this legislation, APFED is working collaboratively with professional medical societies including the American Academy of Pediatrics, the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and other patient advocacy groups that rely on medical foods that are prescribed to treat their disease. The participating groups have formed a coalition known as Patients & Providers for Medical Nutrition Equity and are working to encourage the passage of this federal bill.
MNEA is bipartisan legislation. Currently MNEA has 13 congressional co-sponsors. APFED and members of the coalition are working to increase support from Congress and We Need Your Help!
April 2018 Update: Join us as we advocate in DC!
Register by May 2, 2018 to express your interest!
Patients and stakeholders are invited to join the Patients & Providers for Medical Nutrition Equity for a “Hill Day” on Friday, June 1, 2018 in Washington, DC as we ask Congress to join us in the fight to secure access to medical nutrition by supporting the Medical Nutrition Equity Act (H.R. 2587 and S. 1194). We are in particular need of advocates who are from Republican-led legislative districts.
7:30am – 9am: Breakfast and Training Session for Participants*
9:30am – 5pm: Meetings with your members of Congress**
12pm-1pm: Congressional Briefing on the Importance of the Medical Nutrition Equity Act
* The breakfast and training session will be held at the Liaison Capitol Hill Hotel at 415 New Jersey Ave NW. While we do not have a room block at this hotel, participants are encouraged to stay as close to this location as possible.
** Please note that all congressional meetings will be scheduled by the Patients & Providers for Medical Nutrition Equity Coalition.
Register at https://www.surveymonkey.com/r/PPMNE2018 by Wednesday, May 2 and indicate that you are with the American Partnership for Eosinophilic Disorders
Travel, lodging, and any related expenses will be the responsibility of the registrant. If you are not able to attend Hill Day on June 1, but would like to be involved, you are encouraged to schedule in-district meetings that same week with your congressmen and senators. If you schedule a local meeting, please let APFED know the details so that the Coalition can track nationwide efforts and follow up as needed. The information may be emailed to email@example.com.
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.
Here’s how you can help:
1. Contact your Senators and Representatives (check the table below to see those who have already co-sponsored). If you are not able to speak directly to the Senator or Representative, you may speak to designated staff or the health legislative assistant. You may do an in-person meeting, a phone call, or a letter/email.
a. 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.
b. Telephone numbers for Congressional offices in DC may be found online at https://www.usa.gov/elected-officials. If you must leave a voice message, stay brief but share the information below. Leave your name and contact information as well.
c. If you write, share a 1-page story that summarizes the importance of this legislation to your family. Include the 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. Add a photograph of you, your child, or your family. Including personal details will help your story be memorable.
d. If you visit in person, print and bring a copy of this document, How Coverage of Medical Foods Can Help Families Gain Access to Therapy.
2. Introduce yourself, share where you live, and tell them the reason for your visit/call/letter 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 that you are visiting/calling/writing 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 to 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 is 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 reported paying as much as $1,200 or more out-of-pocket for a one-month supply of prescribed formula.
● Twenty currently states have mandates for insurance coverage of medical foods.
● The National Defense Authorization Act (S.2943) passed in 2016 and enacted last year, which included language to improve the coverage of medical foods such as elemental formula for TRICARE recipients.
5. Thank them for their time. If you are speaking directly to a staff member, ask if you may have their email address to send a follow up.
6. Send a message a few days later thanking the assistant again for his or her time and emphasize 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.How Coverage of Medical Foods Can Help Families Gain Access to Therapy
If your members of Congress are listed, please contact them TODAY!
Review the table below. Column A shows the congressional co-sponsors the bill has to date. Column B shows a list of specific, key sponsors that we are targeting for support.
|Column A: Current Co-Sponsors (as of 2/16/18)|
Rep. Capuano, Michael E. [D-MA-7]
Rep. Lynch, Stephen F. [D-MA-8]
Rep. Ryan, Tim [D-OH-13]
Rep. Velazquez, Nydia M. [D-NY-7]
Rep. Tonko, Paul [D-NY-20]
Rep. Beatty, Joyce [D-OH-3]
Rep. Kilmer, Derek [D-WA-6]
Rep. Walz, Timothy J. [D-MN-1]
Rep. Lewis, John [D-GA-5]
Rep. Kaptur, Marcy [D-OH-9]
Rep. Higgins, Brian [D-NY-26]
Rep. Himes, James A. [D-CT-4]
Rep. Engel, Eliot L. [D-NY-16]
Rep. Pingree, Chellie [D-ME-1]
|Column B – Target Co-Sponsors
• Rep. Mike Rogers (3rd District)
• Senator Lisa Murkowski
• Rep. Andy Biggs (5th District)
• Rep. Mimi Walters (45th District)
• Rep. Mike Coffman (6th District)
• Rep. Scott Tipton (3rd District)
• Rep. Gus Bilirakis (12th District)
• Rep. Brian Mast (18th District)
• Rep. Ted Yoho (3rd District)
• Senator Johnny Isakson
• Senator David Perdue
• Senator Mike Crapo
• Rep. Peter Roskam (6th District)
• Rep. Rodney Davis (11th District)
• Rep. Larry Bucshon (8th District)
• Rep. Susan Brooks (5th District)
• Senator Joni Ernst
• Senator Pat Roberts
• Rep. Brett Guthrie (2nd District)
• Senator Bill Cassidy
• Rep. Clay Higgins (3rd District)
• Senator Susan Collins
• Rep. Jack Bergman
• Rep. Dave Trott (11th District)
• Senator Roger Wicker
• Rep. Trent Kelly (1st District)
• Rep. Don Bacon (2nd District)
• Senator Dean Heller
• Rep. Leonard Lance (7th District)
• Rep. Tom MacArthur (3rd District)
• Rep. Chris Collins (27th District)
• Rep. Daniel Donovan (11th District)
• Rep. John Katko (24th District)
• Rep. Peter King (2nd District)
• Senator Richard Burr
• Senator John Hoeven
• Senator Rob Portman
• Rep. Mike Turner (10th District)
• Senator James Inhofe
• Rep. Greg Walden (2nd District)
• Senator Patrick Toomey
• Rep. Bill Shuster (9th District)
• Rep. Brian Fitzpatrick (8th District)
• Rep. Lloyd Smucker (16th District)
• Rep. Glenn Thompson (5th District)
• Rep. Joe Wilson (2nd District)
• Senator John Thune
• Rep. Diane Black (6th District)
• Rep. Michael Burgess (26th District)
• Rep. Mike McCaul (10th District)
• Rep. Ted Poe (2nd District)
• Rep. Barbara Comstock (10th District)
• Rep. Robert Wittman (1st District)
• Rep. Dave Reichert (8th District)
• Rep. Cathy McMorris Rodgers (5th District)
• Senator Shelley Moore Capito
• Rep. Sean Duffy (7th District)
• Rep. James Sensenbrenner (5th District)