What’s Coming in 2026 — and Why Every Advocate Matters

In early July of this year, Congress passed H.R. 1 — nicknamed the “One Big Beautiful Bill Act.” It’s a sweeping law that rewrites large parts of Medicare, Medicaid, and the Affordable Care Act. Some changes started right away, but the most dramatic ones will hit in 2026 and beyond.

Supporters call it “streamlining.” But for patients, it could mean higher costs, more paperwork, and greater challenges staying covered. For people with bleeding disorders, that’s a genuine concern.

Medicaid on the Line

Medicaid will see the most significant changes. Over the next 10 years, federal spending is expected to drop by nearly $1 trillion. That means States will have to fill the gap or make painful cuts.

We’re already seeing what that looks like. Colorado held a special session to plug in a $750 million shortfall. In New Mexico, nearly 900,000 people could lose coverage unless lawmakers act. And that’s just the beginning.

For families with rare or chronic conditions, these cuts translate into fewer providers, longer waits, and higher costs for critical treatments.

“Work Reporting” Returns

H.R. 1 brings back a policy that’s already failed once: Medicaid work reporting requirements.

These rules say that “able-bodied adults” must prove they work, attend school, or volunteer at least 20 hours a week. When Arkansas tried this in 2018, more than 18,000 people lost coverage, not because they didn’t work, but because they missed paperwork or couldn’t keep up with the system.

For those with bleeding disorders, even a single bleed or hospital stay can make it impossible to meet weekly requirements. Guidance on the new rules is coming in 2026, and states will be required to enforce them by 2027, some even sooner.

More Paperwork, Less Protection

Even those who stay eligible will face extra red tape. Starting in 2027, Medicaid recipients will have to reverify eligibility every six months instead of once a year. A patient who misses one notice or form could lose coverage.

And there’s a ripple effect: Losing Medicaid can also lead to losing access to Marketplace discounts that make private coverage affordable.

For people managing lifelong conditions like hemophilia or von Willebrand disease, those interruptions aren’t just inconvenient; they’re dangerous.

Premium Tax Credits Expiring

Another significant issue is the expiration of Enhanced Premium Tax Credits (ePTCs), the discounts that help millions afford Marketplace plans. They end on December 31, 2025, unless Congress renews them.

These credits were expanded during the pandemic to cap insurance costs at 8.5% of household income and to help more middle-income families qualify. If they expire, premiums could jump 18% on average, and out-of-pocket costs could rise to 75%.

For many, that means choosing between paying rent and paying for care.

Pressure on States, Pressure on Families

Every state will feel these changes. Some may raise costs, cut benefits, or reduce provider payments. That could leave rural areas and specialty clinics struggling to serve patients who rely on consistent access to treatment.

The result? Growing gaps in those who can get care and those who can’t.

Advocacy Works — and It’s Needed Now

Here’s the good news: When our community speaks up, it makes a difference.

Because of your calls, emails, and meetings, several harmful proposals were removed from H.R. 1, including cuts to safety-net hospitals and limits to open enrollment. That’s what advocacy does: it changes outcomes.

But H.R. 1 is just the beginning. The following 12–18 months will determine how these rules are implemented and whether our voices are heard in that process.

How You Can Help

If you believe access to care shouldn’t depend on income, paperwork, or where you live, now’s the time to get involved.

Join the HFA Advocacy Network to:

• Stay updated on healthcare changes that affect the bleeding disorders community.
• Get simple tools to help you contact lawmakers and share your story.
• Connect with advocates across the country who care as much as you do.

Join the Advocacy Network Today!

The Bottom Line

The changes coming in 2026 could reshape healthcare for years to come. Medicaid work rules, shrinking budgets, and rising premiums threaten to make staying covered harder than ever.

Policy can be complicated, but our message is simple:

No one with a bleeding disorder should lose treatment because of politics or paperwork.

Together, we can make sure that doesn’t happen. Join HFA’s Advocacy Network today and help protect access to care for everyone in our community.

For more information on HFA’s Advocacy efforts and network, please visit the HFA homepage or