Medical Nutrition Equity Act – Action Needed!

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 24 congressional co-sponsors. APFED and members of the coalition are working to increase support from Congress and We Need Your Help!

 


Legislative Call to Action:
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. We are particularly interested in securing more Republican co-sponsors.

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!

If you are writing to your lawmakers, here is some sample language to get you started: one template is a sample for asking for co-sponsorship; the other is a sample message of following up with offices we have met with.

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 $2,000 or more out-of-pocket for a one-month supply of prescribed formula.
● Twenty-two states currently 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 7/23/18)

H.R. 2587
Sponsors: Delaney (D-MD) & Herrera Buetler (R-WA)
Introduced: May 22, 2017
Committees of jurisdiction: E&C – Health; W&M – Health; Armed Services – Military Personnel; Oversight & Gov Reform
Co-sponsors (as of 23rd July 2018): 22
Beatty (D-OH)
Blackburn (R-TN) – E&C
Capuano (D-MA)
Delaney (D-MD)*
Fitzpatrick (R-PA)
Engel (D-NY) – E&C
Herrera Buetler (R-WA)*
Higgins, B (D-NY)
Himes (D-CT)
Issa (R-CA) – Oversight
Jenkins (R-WV)
Jones, W (R-NC) – Armed Svcs – MP
Kaptur (D-OH)
Kilmer (D-WA)
Lewis (D-GA) – W&M
Lynch (D-MA)
Payne (D-NJ)
Pingree (D-ME)
Ros-Lehtinen (R-FL)
Ruppersberger (D-MD)
Ryan, T (D-OH)
Tonko (D-NY) – E&C
Velazquez (D-NY)
Walz (D-MN)
Column B – Target Co-Sponsors

OFFICES WE HAVE MET WITH THAT NEED TO HEAR FROM GRASSROOTS

During the June 1 Hill Day
AL – Sen. Shelby; Rep. Brooks
CO – Sen. Gardner
FL – Sen. Rubio; Rep. Bilirakis; Good to note with these offices that Rep. Ros-Lehtinen has co-sponsored
GA – Sen. Perdue; Sen. Isakson; Rep. Handel;
IN – Sen. Young; Rep. Brooks
IA – Sen. Ernst; Rep. Blum - Good to note with these offices that Sen. Grassley is the lead Senate Republican on the bill
KS – Sen. Moran; Sen. Roberts; Rep. Yoder
MD – Rep. Harris
MN – Rep. Paulsen; Rep. Duffy
NJ – Rep. Frelinghuysen; Rep. Chris Smith; Rep. Lance
OH – Sen. Portman; Rep. Wenstrup; Rep. Joyce; Rep. Stivers
PA – Sen. Toomey; Rep. Thompson; Good to note with these offices that Rep. Fitzpatrick has co-sponsored
TN – Sen. Corker; Sen. Alexander; Good to note with these offices that Rep. Blackburn has co-sponsored
TX – Sen. Cruz; Sen. Cornyn; Rep. Olson
VA – Rep. Wittman; Rep. Comstock
WI – Sen. Johnson; Rep. Sensenbrenner; Rep. Grothman; Rep. Duffy; Rep. Gallagher

Other offices that the Coalition or individual organization members of the Coalition have met with recently
• Rep. Mike Coffman (R-CO)
• Rep. Doug Lamborn (R-CO)
• Rep. Brian Mast (R-FL)
• Rep. Ted Yoho (R-FL)
• Rep. Rodney Davis (R-IL)
• Rep. Marshall (R-KS)
• Rep. Clay Higgins (R-LA)
• Sen. Collins (R-ME)
• Sen. Blunt (R-MO)
• Rep. Don Bacon (R-NE)
• Rep. Dan Donovan (R-NY)
• Rep. Tom Reed (R-NY)
• Rep. Mike Turner (R-OH)
• Rep. Lloyd Smucker (R-PA) Good to note with these offices that Rep. Fitzpatrick has co-sponsored
• Rep. Tom Marino (R-PA) - Good to note with these offices that Rep. Fitzpatrick has co-sponsored
• Rep. GT Thompson (R-PA) Good to note with these offices that Rep. Fitzpatrick has co-sponsored
• Sen. Rounds (R-SD)
• Rep. Kristi Noem (R-SD)
• Sen. Capito (R-WV) - Good to note that Rep. Jenkins has co-sponsored
• Rep. McKinley (R-WV) – Good to note that Re. Jenkins has co-sponsored
• Any other Republican who is not yet co-sponsoring (see Column A)


Share Your Story!

Have you been impacted by lack of insurance coverage for elemental formula that was prescribed to treat an eosinophilic gastrointestinal disease? 
Share your story with Patients & Providers for Medical Nutrition Equity.