What's Happening?
The National Organization for Rare Disorders (NORD) has released its 2025 State Report Card, evaluating all 50 states and Washington, D.C. on policies affecting over 30 million Americans with rare diseases. The report indicates that while there have been
improvements in telehealth and prescription affordability, significant gaps remain in ensuring timely access to life-sustaining care. The nation received a 'B' grade overall, but this average conceals wide disparities among states. Key findings include poor medical nutrition coverage, with 13 states failing, and inadequate protection against short-term insurance plans in 22 states. Only four states received an 'A' grade, highlighting the uneven protection landscape.
Why It's Important?
The report underscores the critical need for equitable healthcare access for individuals with rare diseases, who often face significant challenges in obtaining necessary treatments. The disparities highlighted in the report suggest that many families remain vulnerable, particularly in states with lower grades. This situation calls for policymakers to strengthen protections and ensure that access to life-saving care does not depend on geographic location. The findings also emphasize the importance of Rare Disease Advisory Councils, which are lacking in 19 states, to provide patients a voice in healthcare policy.
What's Next?
The report suggests that states need to address the identified gaps to improve healthcare access for rare disease patients. This includes expanding telehealth services, enhancing prescription affordability, and establishing or strengthening Rare Disease Advisory Councils. Policymakers are urged to prioritize these areas to prevent financial hardships for families and improve overall healthcare outcomes. The ongoing federal pullbacks in healthcare policy enforcement further stress the need for state-level action.
