What's Happening?
The National Organization for Rare Disorders (NORD) has released its 2025 State Report Card, assessing the policies of all 50 states and Washington, D.C. regarding rare diseases. The report evaluates state performance across nine key policy areas, including
Medicaid eligibility, prescription affordability, telehealth, insurance safeguards, and medical nutrition coverage. While there have been improvements in telehealth and prescription affordability, significant gaps remain, particularly in medical nutrition coverage, where no state received an A grade. The report also highlights the absence of Rare Disease Advisory Councils (RDACs) in 19 states, which limits patient input in healthcare policy. Only four states—Colorado, Delaware, Maine, and New Jersey—earned overall A grades, while most states received Bs and Cs, indicating a wide disparity in protections based on geography.
Why It's Important?
The report underscores the critical role state policies play in determining access to care for the 30 million Americans living with rare diseases. The disparities highlighted in the report suggest that many patients face challenges in accessing necessary treatments, which can lead to financial hardship and inadequate care. The absence of RDACs in many states further exacerbates these issues by limiting patient advocacy and input in policy-making. The findings emphasize the need for policymakers to strengthen protections and ensure equitable access to care, regardless of geographic location. This is particularly important as federal agencies have deprioritized enforcement of certain insurance plans, placing more responsibility on state laws to safeguard patient interests.
What's Next?
Several states, including Vermont, Oklahoma, Hawaii, and Pennsylvania, have introduced legislation to establish new RDACs, while others like Michigan, New York, Utah, and Washington are working to extend or strengthen existing councils. These efforts aim to enhance patient advocacy and influence in healthcare policy. As states continue to address these gaps, the focus will likely remain on improving access to care and ensuring that patients with rare diseases receive the necessary support and resources. The ongoing legislative efforts and the establishment of RDACs could lead to more uniform protections and better healthcare outcomes for patients across the country.
