Save the Date!
Capitol Hill Advocacy Day
May 18-19, 2020
Patients, families, and providers are invited to join APFED and other advocates from the Patients and Providers for Medical Nutrition Equity in Washington D.C. as we advocate for federal legislation that provide insurance coverage of medical foods. We need as many congressional districts represented as possible! Registration will open in 2020. In the interim, if you plan to attend, please let us know so that we can ensure you are notified when registration opens.
The Medical Nutrition Equity Act, also known as MNEA, is legislation reintroduced in Congress in May 2019 by Representatives McGovern and Herrera Beutler with Reps. Brian Fitzpatrick and Joe Kennedy joining as original co-sponsors. The new bill number is H.R. 2501.
MNEA would provide public and private insurance coverage for medically necessary foods (including vitamins) for digestive and inherited metabolic disorders.
• Digestive conditions include: inflammatory bowel disease (e.g. Crohn’s disease and ulcerative colitis), eosinophilic digestive disorders, food protein induced enterocolitis syndrome (FPIES), IgE mediated food allergies, and malabsorption due to liver or pancreatic dysfunction, or short bowel syndrome.
• Inherited metabolic disorders include: metabolic disorders on the Recommended Uniform Screening Panel Core Conditions list of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children; and other genetic metabolic disorders requiring special foods medically necessary foods would be covered under Medicaid, CHIP, Medicare, FEHBP, and private insurance if they are prescribed by the patient’s provider. Legislation in the 114th Congress extended coverage of medical foods to TRICARE beneficiaries for most conditions.
To support this legislation, APFED is working collaboratively with professional medical societies and other patient advocacy groups who represent patients who rely on medically necessary foods to treat their disease. These groups work collaboratively as part of 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. A list of sponsors and co-sponsors may be found online. We are currently 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. 2501) 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 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 are meeting members of Congress or staff in their district offices, print and bring a copy of these documents:
- “How Coverage of Medical Foods Can Help Families Gain Access to Therapy” fact sheet
- “Dear Colleague” letter from Representatives McGovern and Herrera Beutler
- You can also print and share patient stories from your state on the coalition website (just click on the state and you will see a prompt to “download and print stories”).
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. 2501).
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 pharmaceuticals indicated for the treatment of an eosinophilic gastrointestinal disease. Symptoms are often treated with steroids that prescribed off-label, proton pump inhibitors, 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.
● Thirty-five states passed legislation pertaining to insurance coverage of medical foods (22 provide coverage for EGIDs).
● 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. 2501). 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
Share Your Story!