Report published in honor of National Eosinophil Awareness Week May 2023

Washington D.C., May 18, 2023 — A groundbreaking study report reveals challenges and barriers to timely diagnosis and effective treatment and management of a rare, but increasing allergic condition known as eosinophilic esophagitis (EoE). The results of the study portray the current state of EoE care in the United States and identify unmet needs for patients, family members, and health care providers.

Eosinophilic esophagitis (EoE) is a chronic inflammatory condition of the esophagus (the tube that connects the mouth to the stomach). It is characterized by excessive numbers of eosinophils, a type of white blood cell, that accumulate in the esophagus in response to a trigger (often food or pollen). EoE can cause difficulty swallowing, food impactions (where food gets stuck in the throat), nausea, vomiting, reflux, stomach and chest pain, malnutrition and weight loss.

The Asthma and Allergy Foundation of America (AAFA) and the American Partnership for Eosinophilic Disorders (APFED) conducted a multicomponent cross-sectional needs assessment study for EoE. The study aimed to understand the patient journey for EoE as well as health care providers’ awareness of and practice around EoE. The public summary of the study is now available in a report called Life with EoE: The Patient Experience and Opportunities to Improve Care in the U.S.

“EoE significantly impacts patients and their families physically, socially, mentally, and financially,” said Sanaz Eftekhari, co-author and vice president of research for AAFA. “People living with EoE may face many challenges throughout their disease journey. The process of diagnosis can be lengthy and frustrating. Clinical management of EoE often requires ongoing testing, clinic visits, and treatment evaluations and reevaluations. Understanding the EoE journey directly from patients and caregivers can help ensure that future diagnostic tools, clinical guidelines, treatments, and resources for EoE are aligned with patient needs.”

Key findings:

• Many patients experience delays in diagnosis for EoE, leading to delayed symptom relief, clinical care, and treatment.
• Signs and symptoms of EoE are not well-understood and mimic many other diseases, further delaying EoE diagnosis.
• Multidisciplinary care teams are common for EoE management.
• Adherence to treatment plans — particularly dietary therapies — poses the greatest challenge in managing EoE.
• EoE has a significant impact on social and emotional well-being.
• Patients/caregivers and health care providers acknowledge a greater need for support and resources for EoE.

“Eosinophilic esophagitis is a complex condition to manage, and this study and report help identify areas of improvement to ensure patients have the support they need to confidently manage their disease,” states Matthew Greenhawt, M.D., MBA, MSc of Children’s Hospital Colorado and member of AAFA’s Medical Scientific Council.

The Life with EoE report identifies opportunities to address the unmet needs and improve future care for people living with eosinophilic esophagitis in the United States. Insights from patients, caregivers, and health care providers describe the current state of EoE care in the United States—including challenges and barriers to timely diagnosis, quality medical care, effective treatments, and access to resources for EoE.

“This study sheds light onto the barriers to efficient and quality care for those living with EoE in the U.S.,” said Mary Jo Strobel, co-author and executive director for APFED. “Patients are eager for new treatment options and streamlined care. We anticipate this report will guide efforts of advocates, educators, policymakers, and members of the medical and research communities as we all work toward improved care and development of meaningful resources for those with EoE.”

The Life with EoE report is an independent research project of the Asthma and Allergy Foundation of America and the American Partnership for Eosinophilic Disorders and made possible by support from Sanofi and Regeneron.