The 2024 Advocacy Retreat and Hill Day Recap 

From September 20-24, 2024, 30 community members from across the nation gathered in Washington, D.C., for the Hemophilia Federation of America’s (HFA) Advocacy Retreat. The event was a powerful demonstration of unity, bringing together individuals with a common goal: to advocate for the bleeding disorders community and ensure our voices were heard at the highest levels of government. The retreat culminated in Hill Day on September 23, a day dedicated to sharing our healthcare policy priorities with legislators and advocating for crucial policy changes that impact people with bleeding disorders.

The 2024 Advocacy Retreat and Hill Day demonstrated the powerful impact of collective advocacy. Speaking as a united voice, participants addressed their healthcare needs and helped push policy change for the entire bleeding disorders community.

Building Advocacy Skills

The retreat was a crucial step in our advocacy journey, designed to equip participants with the knowledge and tools necessary for effective advocacy. HFA’s agenda was packed with educational workshops and hands-on exercises, ensuring that every attendee left feeling prepared and confident to be a strong voice for themselves and the bleeding disorders community.

The retreat started on Friday night, September 20, with a welcome reception. The room was filled with excitement and a shared understanding that attendees were ready to make a difference. The following day was focused on self-advocacy, with workshops led by the Blood Brotherhood and Blood Sisterhood. Participants explored strategies to build strong partnerships with healthcare providers to understand and address the trauma that often comes with managing a chronic condition. 

 The following day, participants prepared for the “big day on the Hill.” The Young Adult Advocacy Summit (YAAS) was especially helpful for younger attendees. It provided a platform to share their unique challenges and perspectives in navigating healthcare as they transition from their parent’s insurance plans into the workforce. In addition, the summit offered practical advice and resources for these transitions. Meanwhile, others in the community shared their personal stories and crafted their messaging for legislative meetings. HFA concluded the day with a Hill Day prep session that ensured everyone felt confident and prepared to speak with lawmakers about HFA’s legislative priorities.

Hill Day 2024: Taking Action on Capitol Hill

Hill Day, on Monday, September 23, marked the highlight of the Advocacy Retreat. Equipped with new advocacy knowledge and unwavering passion for the issues, advocates met with lawmakers to discuss key healthcare policy priorities. Central to these discussions was the HELP Copays Act, bipartisan legislation aimed at eliminating barriers to care by addressing harmful insurance practices. The act seeks to prohibit Copay Accumulator Adjustment Programs (CAAPs), which prevent patients from fully benefiting from third-party copay assistance for high-cost, life-saving drugs.

Advocates urged lawmakers to extend the Premium Tax Credit enhancements for Affordable Care Act (ACA) plans. These enhancements make healthcare coverage more affordable for millions of Americans, including many individuals in the bleeding disorders community.

The impact of the 2024 Hill Day was significant. Advocates participated in 57 in-person meetings with lawmakers, where they discussed key healthcare policy priorities and received commitments from some legislators to support the HELP Copays Act. They conducted 17 drop-in visits, which led to further discussions and raised awareness about the challenges faced by the bleeding disorders community. 

Looking Forward: The Power of Advocacy

The 2024 Advocacy Retreat and Hill Day demonstrated the powerful impact of collective advocacy. Speaking as a united voice, participants addressed their healthcare needs and helped push policy change for the entire bleeding disorders community. Whether through face-to-face meetings with lawmakers, sending emails, or engaging on social media, every advocate played a vital role in driving change. The momentum generated from this year’s efforts is a testament to the power of advocacy and a source of hope for the future, reminding the community that we can influence healthcare policies and create a more equitable system for all.