For people living with bleeding disorders, access to treatment isn’t optional, it’s life-sustaining. Yet every year, too many individuals and families are forced to navigate a healthcare system that makes essential care harder to afford, harder to access, and harder to sustain.
At HFA, we believe in building clear pathways to care: systems that are predictable, transparent, and centered on patients. But copay accumulator policies are creating confusion and financial barriers that block those pathways.
That’s why HFA has launched a new HELP Copays Action Alert, and why we’re asking our community to speak up now.
This moment matters. And your voice can help protect clearer, more reliable access to treatment.
Tell your representative to support the HELP Copays Act of Congress
The Reality Many Families Face
For individuals with hemophilia, von Willebrand disease, and other rare bleeding disorders, treatment costs can be staggering. Even with insurance, out-of-pocket expenses add up quickly, especially when insurers refuse to count copay assistance toward deductibles or out-of-pocket maximums.
Copay assistance programs exist to help patients afford necessary, ongoing medications. But when insurance companies accept those payments and refuse to credit them toward what patients owe, families can suddenly be left responsible for thousands of dollars in unexpected costs.
The result:
- Delayed treatment.
- Skipped doses.
- Financial strain.
- Anxiety about whether care will remain accessible month to month.
When affordability becomes unpredictable, pathways to care become unstable.
No one should have to question whether they can afford the medication that keeps them safe.
What the HELP Copays Act Would Do
The federal HELP Copays Act is designed to close a loophole that allows insurers to exclude copay assistance from counting toward patient cost-sharing requirements.
In plain terms, the bill ensures that when copay assistance is used to pay for a prescription, it counts toward the patient’s deductible and out-of-pocket maximum.
For the bleeding disorders community, this would mean:
- More predictable access to treatment.
- Fewer financial surprises.
- Greater stability for families managing lifelong care.
- Reduced risk of treatment interruption.
- Stronger, clearer pathways to care.
This is about fairness. And it’s about ensuring financial assistance does what it was intended to do – help patients stay on treatment.
Why Federal Action Is So Important
Several states have passed laws addressing copay cost-shifting, and those efforts matter. HFA supports strong state-level advocacy wherever possible.
But state protections have limits.
They often apply only to certain types of insurance plans regulated at the state level. Employer-funded and self-insured plans, which cover millions of Americans, may not be included. That creates a patchwork system where access depends on geography and insurance structure.
The federal HELP Copays Act is different.
A national solution would:
- Reach more people, regardless of state or insurance type.
- Create consistent protections across the country.
- Reduce confusion about coverage rules.
- Ensure that clear pathways to care don’t depend on zip code.
Federal action helps level the playing field and strengthens access nationwide.
What’s at Stake for Our Community
Bleeding disorders are chronic, complex, and costly to manage. Treatment decisions are not occasional; they are ongoing, preventative, and sometimes urgent.
When financial policies undermine affordability, they don’t just create stress. They disrupt care.
Treatment interruptions can lead to:
- Increased bleeds
- Joint damage
- Emergency room visits
- Long-term complications that could have been prevented
Stable access to medication is part of what keeps pathways to care open. When those pathways are blocked by hidden cost barriers, health outcomes suffer.
Advocacy ensures policymakers understand these real-world consequences, not as abstract policy debates, but as lived experiences.
Tell your representative to support the HELP Copays Act of Congress
Your Voice Makes a Difference
Lawmakers need to hear directly from the people affected by these policies. They need to understand how copay accumulator programs impact daily life, treatment decisions, and long-term health.
By taking action through HFA’s HELP Copays Action Alert, you are:
- Sharing your story with elected officials
- Elevating the needs of the bleeding disorders community
- Supporting a policy solution that strengthens clear pathways to care
- Standing up for families who deserve stable, sustainable access to treatment
Take Action Today
HFA has made it simple to participate. Our Action Alert provides an easy way to send a message to your Members of Congress urging them to support the HELP Copays Act.
Every message helps protect access.
Every voice strengthens our community.
Together, we can push for solutions that remove financial barriers, create clearer pathways to care, and ensure that no one faces interruptions to life-sustaining treatment because of loopholes.
Add your voice to the HELP Copays effort today.
Because access to care should be clear, reliable, and within reach for everyone who depends on it.
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