BACKGROUND: Eosinophilic esophagitis (EoE) is a chronic disease for which there is currently no US Food and Drug Administration-approved pharmacologic therapy. Patients thus rely on off-label medication and dietary modification. Methods: This was a noninterventional, cross-sectional, web-based survey of adolescents (11–17 years old; caregiver-reported) and adults (18 years or older), with a caregiver- or self-reported physician diagnosis of EoE, recruited from the Campaign Urging Research for Eosinophilic Disease (February 2–22, 2021). Participants reported on their overall health, EoE symptoms, current prescription drug use for EoE, health insurance and EoE-associated out-of-pocket costs.
OBJECTIVE: To assess the treatment and cost burden of EoE in adolescents and adults in the USA.
RESULTS: Overall, 395 participants (adolescents, n=211; adults, n=184) completed the survey; 74.7% of participants described their overall health as “good”, “very good” or “excellent”. Most participants (71.6%) rated their EoE severity as “moderate” (49.4%), “severe” (17.7%) or “very severe” (4.6%); 43.0% of participants rated their EoE symptoms in the past 3 months as “somewhat” (35.7%) or “not at all” (7.3%) controlled. These findings were similar for adolescents and adults. Most participants were receiving a prescription drug for EoE (adolescents, 83.4%; adults, 72.8%); many were receiving two or more prescription drugs (adolescents, 66.5%; adults, 69.4%). Of participants who were receiving one or more prescription drugs, most had private medical insurance (adolescents, 60.9%; adults, 63.1%). Despite this, 69.7% of participants reported difficulties with insurance coverage, payment and/or prior authorization requirements for prescription drugs for EoE. Of participants who were receiving one or more prescription drugs, 54.8% paid a copay (adolescents, 55.1%; adults, 54.5%). A third of participants (adolescents vs adults) had Medicaid/Medicare (33.5% vs 27.6%) or paid out-of-pocket because their insurance company did not cover prescription drugs (11.4% vs 17.9%) or they did not have insurance (4.0% vs 5.2%); 7.1% of participants paid for prescription drugs by other means. In the past year, 24.7% (adolescents, 23.6%; adults, 25.9%) and 15.5% (adolescents, 16.1%; adults, 14.8%) of participants paid US$3500 to less than US$5000 and US$5000 or more, respectively, out-of-pocket for EoE-related medication, diet and medical services/procedures.
CONCLUSIONS: These findings highlight the treatment and cost burden, frequent prescription drug use and unmet medical need in EoE.
