Advocacy Efforts

The International FPIES Association (I-FPIES) strives to be the worldwide leader in advocacy, policy, and legislative efforts to one day eradicate the challenges of living with Food Protein-Induced Enterocolitis Syndrome (FPIES). Our proactive advocacy agenda aims to address the many areas in which patients and families are impacted by FPIES: in medical settings, insurance reimbursement, school and childcare settings, pharmaceutical intervention, as well as restaurants, work, travel, and emergency settings.

Learn more below about our advocacy milestones and ongoing advocacy efforts on behalf of FPIES patients and families, including our formula coverage efforts and the annual National FPIES Awareness Day (May 4th).

Recent Initiatives

Elemental Formula Coverage
I-FPIES is an official partner of the effort to pass the Medical Nutrition Equity Act (MNEA) in the U.S. Congress.  The MNEA is bipartisan legislation that has previously been introduced in the U.S. Congress. The bill, if passed, would provide public and private insurance coverage for medically necessary foods for inherited metabolic disorders and digestive conditions, including FPIES. Elemental formula is an example of a medical food. Stay tuned as we gear up for reintroduction to Congress in 2023.

To support this legislation, the International FPIES Association is working collaboratively with professional medical societies and other patient advocacy groups who represent patients that rely on medically necessary foods to treat their disease. These groups work collaboratively as part of a coalition known as Patients and Providers for Medical Nutrition Equity (PPMNE) and are working to encourage the passage of this federal bill.

Other Advocacy Milestones

Diagnostic Code Passage and Implementation
FPIES has an official diagnosis code: K52.21! Securing the ICD-10 code was an ambitious, years-long initiative for the International FPIES Association. 

Our organization spent years spearheading the successful campaign for a specific diagnostic code for FPIES. Implementation of the official ICD-10-CM code in October of 2016 has helped patients and families gain access to insurance reimbursement, coverage of pharmaceutical interventions, and a better understanding of the prevalence and incidence of FPIES. The ICD-10-CM code also helps advance our long-term goals of improved diagnosis and more effective management of the disorder.

National FPIES Awareness Day
As the result of the International FPIES Association’s advocacy efforts, the United States Senate designated May 4th as National FPIES Awareness Day in 2015! This day is dedicated to creating and raising awareness about FPIES, a food allergy of the gastrointestinal system for which there is little awareness and no cure. On this day, organizations from across the U.S. will work together with a common focus and message to spread the word about FPIES and its symptoms.

Advocacy Partners
I-FPIES also serves as a liaison between the FPIES patient community and the institutions that have a direct impact on their health, including:

• United States Congress
• Federal Government
• Medical Societies
• Broader Patient Advocate Groups
• Pharmaceutical, Biotechnology and Medical Device Industries
• Health Insurance, Managed Care and Hospital Industries

Together with other advocacy partners, I-FPIES lobbies legislators to initiate and support policies and bills to improve the quality of life for patients and families affected by FPIES. We are hard at work to initiate policies and laws that will provide relief and support to our community. I-FPIES is also the official FPIES lay organization of the American Academy of Allergy, Asthma & Immunology (AAAAI).

It is our goal to ensure cohesion and involvement in advocacy for FPIES on every continent. I-FPIES partners with the following organizations to support the patients and families we represent on a global level:

• American Academy of Allergy, Asthma & Immunology (AAAAI): www.aaaai.org
• American College of Allergy, Asthma & Immunology (ACAAI): www.acaai.org
• American Academy of Pediatrics (AAP): www.aap.org
• European Academy of Allergy and Clinical Immunology (EAACI): www.eaaci.org
• World Allergy Organization (WAO): worldallergy.org
• North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPHGAN): www.naspghan.org
• National Organization for Rare Disorders (NORD): www.rarediseases.org
• Australasian Society of Clinical Immunology and Allergy (ASCIA): http://www.allergy.org.au/
• Asia Pacific Association of Allergology and Clinical Immunology (APAACI): http://www.apaaaci.org