At the Industry Stakeholder Meeting (Public Policy) on September 11, 2024, the National Bleeding Disorders Foundation (NBDF) Public Policy team once again demonstrated the incredible power of collective advocacy in shaping a brighter future for the bleeding disorders community. For those of us living with, or caring for someone with, a bleeding disorder, it’s critical to know that our voices are being heard at the highest levels of government—and this session showed just how much progress is being made on our behalf.
A major highlight was the continued momentum behind the Health Co-pays Act and Safe Step Act, two legislative efforts that aim to eliminate the financial barriers that many of us face when trying to access life-saving treatments. With 10 new co-sponsors added to the Senate, these initiatives are gaining traction and moving closer to becoming law—meaning that more of us will have better access to the therapies we need to stay healthy.
One of the most exciting and innovative projects introduced at the session was the Voices for Policy Change initiative, a series of 16 powerful, peer-to-peer videos that break down complex policy issues into relatable stories from people like us. By making these policies easier to understand, NBDF is equipping our community with the knowledge we need to advocate for ourselves, whether it’s in a doctor's office, in the workplace, or even with lawmakers.
With the upcoming election season, NBDF is also turning its focus to voter engagement with their Get Out the Vote initiative. This campaign is all about making sure that the bleeding disorders community is informed, registered, and ready to vote on the issues that impact our health and well-being. From postcards distributed at the conference to social media resources, they’re giving us the tools to make our voices heard when it counts the most.
The meeting also included critical updates on state-level advocacy, including efforts to pass accumulator adjuster bills and working with prescription drug affordability boards to ensure that we all have access to the therapies we need. The NBDF team’s dedication to fighting for patient protection on both state and federal levels is a testament to their unwavering commitment to our community.
As the meeting came to a close, it was clear that the NBDF Public Policy team isn’t just advocating on our behalf—they’re empowering us to get involved in these crucial efforts. Whether it’s through raising our voices in Washington, educating ourselves and others, or simply getting out to vote, we all have a role to play in securing a healthier future for the bleeding disorders community. Together, we’re making a difference—one policy win at a time.
Read more about Voices for Policy Change, click here.
