Bleeding Disorders National Community Organizing Call

Earlier this month Congress passed H.R. 1 – the One Big Beautiful Bill for America (OBBBA)—a sweeping law that includes the largest cuts to Medicaid in U.S. history and makes fundamental changes to how healthcare is accessed and paid for.

Millions of people will lose access to affordable, life-saving health coverage, including many in the bleeding disorders community. For individuals with bleeding disorders, Medicaid and other marketplace insurance programs are often the only way to access essential treatments like factor, hematology specialists, and comprehensive care. Without this coverage, people face delays in care, financial hardship, and serious health risks.

This bill will force people to jump through more hoops to keep their coverage, pay more out of pocket, and in some cases, lose access altogether. And the impacts won’t be felt equally—people with complex chronic conditions like bleeding disorders will be hit especially hard.

There is no doubt that this bill is a blow.
But your voice has made a difference—and we’re not done yet.

Advocates from across the bleeding disorders community fought to oppose these cuts. And while the outcome isn’t what we hoped for, your efforts helped prevent even worse provisions from being included in the final bill. That matters. You mattered.

Now we must stay informed, connected, and ready to act.

Join Us for the Next National Community Organizing Call

We’ll break down what’s actually in the bill and what it means for your health coverage, affordability, and access.

We’ll cover:

• Will I still qualify for the coverage I have now?
• What changes are coming to Medicaid, the Marketplace, and employer plans?
• Are there new work requirements or reporting rules?
• When do changes go into effect?
• What can I do about it?

Register for the Call – August 6 at 6 PM ET

This is a hard moment. But we’ve faced hard moments before.
We are a community that knows how to fight—and how to support each other.

We’re not giving up.
And we hope you won’t either.

With thanks and determination,
Your HFA Policy & Advocacy Team