The American Partnership for Eosinophilic Disorders (APFED) is a national nonprofit organization dedicated to improving the lives of individuals and families affected by eosinophilic disorders.
We provide evidence-informed education, patient and caregiver support, advocacy, and resources that help stakeholders better understand disease burden, care pathways, and access challenges.
APFED represents the patient and caregiver perspective and serves as a resource to help inform policy and coverage decisions that impact healthcare.
Why Eosinophilic Disorders Matter to Coverage and Policy
Eosinophilic disorders are chronic, immune-mediated diseases that can significantly affect organs, growth and development, mental health, and daily functioning.
Delays in diagnosis, limited access to specialized care, and administrative barriers can cause complications, ultimately leading to increased healthcare utilization.
Principles for Patient-Centered Access
APFED supports healthcare policies and coverage practices that:
- Promote timely diagnosis and evidence-based treatment
- Reduce avoidable delays from repetitive administrative requirements
- Encourage continuity of care, especially during plan transitions
- Support shared decision-making between patients and clinicians
- Consider total burden of disease, including nutritional and psychosocial impacts
Key considerations for decision-makers:
- Chronic, relapsing disease course requiring longitudinal management
- Impact on pediatric and adult populations, with family/caregiver burden
- Need for timely diagnosis, evidence-based treatment, and continuity of care
- Importance of access to specialized, multi-disciplinary clinicians and appropriate therapies
Resources
- Expert guidelines, publications, and codes: Evidence-based resources developed by leading experts to guide best practices, research, and standards of care.
- Life with EoE report (U.S.): Comprehensive U.S. report capturing the lived experiences, challenges, and unmet needs of individuals affected by eosinophilic esophagitis.
- Global EoE Policy position paper: Policy-focused document outlining global priorities, recommendations, and actions to improve outcomes for people living with eosinophilic esophagitis.
- Patient Charter for Eosinophil-associated Diseases: Patient-centered framework defining the rights, needs, and expectations of individuals living with eosinophil-associated diseases.
- APFED’s Specialist Finder: An online tool that helps patients and caregivers locate healthcare professionals experienced in diagnosing and treating eosinophilic disorders.
- “Voice of the Patient” Report for HES: Compiles patient and caregiver input on the most burdensome HES symptoms, daily-life impacts, current treatment experiences, and the outcomes patients want new therapies to target.
Other Resources for Payers
- ManagedEoECare.com: An educational resource that helps patients, caregivers, and clinicians better understand and manage eosinophilic esophagitis (EoE) through clear, practical information on symptoms, diagnosis, and treatment options.
- Value-Based Chronic Disease Collaborative (VBCDC): Brings payers together with advocacy organizations that represent high-cost disease populations to facilitate an open dialogue and to generate shared solutions.
- Haystack Project: Nonprofit organization dedicated to ensuring patient access to treatment options for the rare and ultra-rare community.
Contact / Request a Meeting with APFED
If you are a payer, policymaker, employer benefits leader, or managed care professional and would like to request a briefing or discuss resources, please contact APFED (mail@apfed.org, 713.493-7749). It is helpful to include “Payer/Policy Inquiry” in the subject line