What's Happening?
A recent survey conducted by PANTHERx Rare, a specialty pharmacy focused on rare diseases, in collaboration with Morning Consult, highlights significant challenges faced by patients with rare diseases in navigating their care. The survey, which included
226 patients, providers, and payers, was released ahead of Rare Disease Day on February 28. It reveals that 90% of patients and caregivers feel personally responsible for advocating for personalized care, with more than half often determining the next steps in their care journey. Only a third of respondents have access to dedicated care coordinators. The survey underscores the complexity and personal nature of rare disease journeys, emphasizing the need for coordinated navigation, clearer communication, and stronger clinical partnerships to ensure therapeutic advances lead to meaningful improvements in patient care.
Why It's Important?
The findings of this survey are crucial as they highlight the systemic gaps in the healthcare system for rare disease patients, who often face significant barriers in accessing personalized and coordinated care. The lack of dedicated care coordinators and the responsibility placed on patients and caregivers to navigate complex healthcare systems can lead to delays in treatment and suboptimal care outcomes. This situation underscores the need for healthcare policy reforms and innovations that prioritize patient-centered care models, improve communication among stakeholders, and enhance support systems for rare disease patients. Addressing these issues could lead to better health outcomes and quality of life for this vulnerable population.
