As the pipeline for rare disease therapies continues to expand, new survey data suggest that the healthcare system is not keeping pace with the coordination demands required to deliver those treatments effectively.
A national survey commissioned by PANTHERx Rare and conducted by Morning Consult found that patients, caregivers, and healthcare professionals perceive wide gaps in rare disease care delivery, whereas payors view care coordination far more favorably.
Among patients and caregivers, 76% rated the current rare disease care system as average, below average, or poor, with 44% describing it as poor. Healthcare professionals were even more critical: 86% rated the system as average or worse, and 50% described it as poor. In contrast, a majority of payors (58%) rated the system as good, revealing what the report describes as a stakeholder disconnect.