Advocacy

Copay Assistance is Essential for Patients with Rare Bleeding Disorders

Pacific Northwest Bleeding Disorders advocates on behalf of patients by supporting measures to count copay assistance toward cost-sharing and out-of-pocket maximums.

At PNWBD, we understand how crucial it is for patients with hemophilia, von Willebrand Disease, and other rare bleeding disorders to have access to care and treatment. We provide education and advocacy on behalf of these patients and believe it is important to share our voice on the issues that impact our community.

One such issue is the importance of copay assistance for patients with rare and chronic disorders, particularly blood-based illnesses. Copay assistance refers to payments made on behalf of the patient that help patients afford specialized treatments.  They are important tools that help patients and their families afford expensive and life-saving medications and therefore remove some of the financial burden on families.

Copay accumulator adjustment programs implemented by insurance companies and pharmacy benefit managers (PBMs) limit the value of manufacturer copay assistance by not counting those dollars toward a patient’s cost-sharing or out-of-pocket maximums. Instead, when an accumulator is in place, insurers and PBMs collect the copay assistance dollars for their own account. This contravenes the intended purpose of copay assistance: relieving patient payment burdens. And it leaves the patient fully exposed to out-of-pocket costs that can prevent them from filling their prescriptions and adhering to their prescribed treatment plan.

People with rare bleeding disorders need specialized care and must make careful decisions with their trusted healthcare providers based on their unique situations. Copay accumulator programs reduce access and affordability for patients, forcing many who require frequent treatments to forego their care, which compounds to worsening health outcomes over time.

According to the National Hemophilia Foundation, the average annual cost of treatment for a person with hemophilia is $300,000 and increasing patient cost sharing has a direct correlation with decreased adherence, leading to unintended consequences like increased ER visits, joint damage, and more.

A bipartisan bill in the Oregon legislature, SB 560, aims to require insurers to count copay assistance payments toward patients’ deductibles and out-of-pocket maximums. At least seven other states (and Puerto Rico) have already taken this action.

Consumers are the heart of this bill. This is not a fight about high cost drugs or expensive insurance, it is about families trying to survive and make ends meet while living with an extremely expensive chronic disease.  It is not possible to fix the entire system with this bill, but it will help families tremendously.  That is why PNWBD supports this legislation and we will continue to speak out on behalf of our patient community to share insight and improve quality of life for patients with bleeding disorders.

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