The Capitol Connection session at this year's Bleeding Disorders Conference transformed complex policy into tangible hope for patients. As attendees filled the room, conversations ranged from insurance worries to advocacy strategies, setting the stage for an engaging discussion.
Nathan Schaefer, Senior VP for Public Policy and Access, broadened perspectives on advocacy. "It's about regulatory comments, letters to Congress, and building relationships," he noted, expanding the definition of what it means to be an advocate.
Policy updates drew strong reactions. The 2025 Notice of Benefit and Payment Parameters, preventing insurers from arbitrarily deeming essential benefits non-essential, elicited sighs of relief. The limitation of short-term insurance plans to three months was met with approval, addressing concerns about unclear coverage.
Perhaps the most impactful announcement was the FDA's new requirement for clinical trials to reflect patient populations. "Finally! Representation matters in treatment too," exclaimed one attendee.
The session wasn't without caution. The potential expiration of enhanced premium tax credits in 2025 and ongoing battles against copay accumulator programs highlighted the need for continued advocacy.
As the session concluded, the transformation was evident. What began as a room of concerned patients ended as a gathering of empowered advocates. "I came here worried about policy. I'm leaving ready to shape it," one participant remarked.
The Capitol Connection session didn't just inform; it galvanized. By emphasizing diverse advocacy strategies and incremental progress, it provided a roadmap for those looking to make a difference, potentially shaping the landscape of bleeding disorder care for years to come. To learn more about NBDF’s public policy initiatives, visit bleeding.org/advocacy.
