Roadmap for Advocacy

May 1, 2025

🚨 URGENT: TAKE ACTION NOW! 🚨

Dear Friends,

I want to take a moment to personally reach out to you, our strong and resilient community of patients, caregivers, and families.

There’s a lot of uncertainty right now. We’re seeing significant changes at the Department of Health and Human Services (HHS), the closing or shifting of divisions, and growing concerns about future federal budget allocations. While we may not know the full scope until this summer, one thing is clear: our voices are needed now more than ever.

But please don’t let fear take over. This is not the time to panic, it’s a time to stay steady, focus on the small wins, and hold onto what we can control. Right now, so much is still unfolding. Some programs may return under different names, and services may continue in ways we can’t yet fully see. It’s completely natural to feel uneasy when things feel so unsettled. But remember, we’re in a time of transition, not a time of endings.

You are not alone in this. We’re here, standing with you. So take a breath, and let’s focus on what we can do, together.

What’s Happening

On May 7, the House Energy and Commerce Committee will begin reviewing a budget reconciliation package that includes $880 billion in proposed cuts to programs like Medicaid and Marketplace subsidies. These cuts could severely impact access to care and support services for families affected by bleeding disorders and other chronic health conditions.

This is not the final vote, but it is a critical step in the legislative process. The markup will involve reviewing, debating, and amending the proposed legislation. We expect more details to emerge over time, with final budget decisions likely coming later this summer.

What You Can Do Right Now