Major Health Policy Changes Ahead
What the 2025 Budget Reconciliation Act Means for People with Hemophilia B
July 28, 2025
Lee Hall
By: Lee Hall
This past May, I joined the CHB Advocacy team during a pivotal moment in health policy. Both political parties were fiercely debating H.R. 1 - now known as the 2025 Budget Reconciliation Act - a sweeping piece of legislation that was signed into law on July 4. This law brings significant changes to Medicaid, Medicare, and Marketplace health coverage that everyone in our community needs to understand.
For those who may not know me yet, I am a lifelong member of the bleeding disorder community. I grew up in an empowered home during some of the most challenging years in our history—the era of Ricky Ray and Ryan White, two young men from our community who lost their lives to HIV, contracted through contaminated factor products. Leaders like Val Bias, Dana Kuhn, Corey Dubin, Ed Burke, and Kim Bernstein inspired me to channel my passion into advocacy, working to protect America’s blood supply and ensure that the sacrifices of so many were not in vain.
I cherish every member of our large, vibrant bleeding disorders community. When I first read the House and Senate versions of H.R. 1, I couldn’t believe the proposed healthcare cuts would pass. Sadly, Congress did pass the bill, and the reality is sobering:
Medicaid will face $1 trillion in cuts over the next decade.
New work requirements will be implemented for many Medicaid recipients.
The ACA open enrollment period will be shortened to occur from November 1 to December 15.
Citizenship or legal status verification will be required, adding more bureaucratic hurdles.
Since then, I’ve participated in countless policy calls with healthcare experts and advocates. Many are calling this the largest loss of healthcare coverage in American history. These changes will impact millions, Including those with hemophilia B and other rare or chronic conditions, regardless of gender, race, religion, or political affiliation.
I can’t help but recall the difficult days our community has faced before, and I worry about what could happen if any of our friends or CHB members lose access to the life-saving treatments they need.
That’s why I’m writing to you now, not to alarm, but to urge action. If you are negatively affected by this new law, do not stay silent. Share your story, post it on social media, tag CHB, or send it directly to us at advocacy@hemob.org, Email your representatives. Your voice matters, and there are still actions we can take as a community.
Stay connected with CHB and check emails, texts and our website for advocacy updates. Be aware of key dates: many changes from the 2025 Budget Reconciliation Act will begin as soon as August 2025. Also, monitor your state’s healthcare policies, as local changes may further impact your coverage.
We will continue to provide updates and resources to help you understand how these policy changes may affect your access to care, affordability, and the stability of your health coverage.
Together, we can face these challenges and continue to advocate for the health and well-being of everyone in the hemophilia B community.
You are not alone. We are here with you through these challenging times, so please, do not stay silent. Reach out and connect with one of our dedicated staff members whenever you need support.
Get Involved and Stay Informed: Register for our upcoming events
We’ll provide up-to-date information and resources to help you navigate these changes. If you have questions or needs before our next meeting, please don’t hesitate to email or call us. Your voice and your well-being matter to us. Together, we are stronger. Let’s continue to support one another and make sure every member of our community feels heard, informed, and empowered.