People living with rare and chronic bleeding disorders such as hemophilia and von Willebrand disease often rely on high-cost specialty medications that do not have generic alternatives. The National Bleeding Disorders Foundation opposes health insurance practices known as copay accumulator adjuster programs (CAAPs) because they can make it harder for patients to afford the treatments they need to stay healthy.
Many patients depend on copay assistance from drug manufacturers or charitable foundations to help cover the high out-of-pocket costs of their prescribed therapies. However, CAAPs allow insurance companies to exclude this assistance when calculating a patient’s deductible or annual out-of-pocket limit. This means patients with bleeding disorders may still have to pay thousands of dollars out of pocket before their insurance starts to cover their care, even when copay assistance has already been used to pay for their medication.
Staying on prescribed preventive therapies is essential to avoid serious bleeding events and long-term joint damage. When people with bleeding disorders cannot consistently access treatment because of cost, they may face preventable complications and increased use of emergency or hospital care.
NBDF is working with federal policymakers and partners in the All Copays Count Coalition to support legislative solutions, including the Help Ensure Lower Patient (HELP) Copays Act, to ensure that copay assistance counts toward patient cost-sharing requirements.
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Current Federal Advocacy
The National Bleeding Disorders Foundation supports federal legislation to ensure that copay assistance counts toward a patient’s deductible and annual out-of-pocket maximum. The Help Ensure Lower Patient (HELP) Copays Act would require health plans to apply all third-party payments toward a patient’s cost-sharing requirements, helping to remove affordability barriers to medically necessary treatment for people with bleeding disorders.
HELP Copays Act Reintroduced to Improve Patient Access | Dec 11, 2025
Take Action
Send a letter to your representatives in support of the Help Ensure Lower Patient (HELP) Act
Ongoing Coalition and Policy Engagement
The National Bleeding Disorders Foundation is a member of the All Copays Count Coalition, a national alliance of patient advocacy organizations working to end the use of copay accumulator adjuster programs (CAAPs) in commercial health insurance.
Background and Past Advocacy Efforts
NBDF has consistently worked to protect people with bleeding disorders from financial barriers caused by copay accumulator adjuster programs. This includes past advocacy letters, legislative support, policy statements, and educational resources explaining how these programs affect people with bleeding disorders.
- Watch a video to learn more about copay accumulators
- Understand how copay accumulators impact patients with different out-of-pocket cost scenarios.
- Survey: “Patients & Family Caregivers: Prescription Drug Affordability Challenges During COVID-19"
- Letter in support of HR 5801
- Report: Copay Accumulator Programs Do Not Reduce Premiums
