Emily Oullette

Fargo

As Executive Director of the Bleeding Disorders Alliance of North Dakota, I have the privilege of serving patients across the state who rely on life-saving medication to manage their conditions. The issue is deeply personal to me. My husband, who grew up in Devils Lake, has severe hemophilia. Without medication to aid in clotting, a minor injury for most people could be life-threatening to him. Our two young daughters are carriers as well.

For individuals with chronic illnesses, access to medication is not optional; it is essential for survival. But it can be expensive. The cost of factor replacement therapy – medication used to prevent dangerous internal bleeding – can range from $350,000 to $1,000,000 per year. There are no generic alternatives. When patients get their medicine in January, they often reach their deductible immediately. Can you imagine needing to pay your full deductible in one payment at the beginning of the year?

Many insurance companies have implemented copay accumulator adjustment policies, which prevent patient assistance funds from counting toward a patient’s deductible or out-of-pocket maximum. This means that even if patients receive financial assistance to afford their medication, they still face enormous bills when that assistance runs out. These policies essentially double-charge patients, making it even harder for them to afford their medication and stay healthy.

Currently, one out of three health insurance plans in North Dakota have copay accumulator programs in place. That’s one too many. This harmful practice must end. Twenty-one states have already passed legislation banning these policies, ensuring that copay assistance funds count toward out-of-pocket costs just as direct patient payments would. North Dakota should be next.

North Dakota prides itself on being a business-friendly state but failing to ban copay accumulator programs does not support businesses or employees. It forces people out of the workforce due to untreated health conditions. When patients lose access to medication, they are at greater risk for medical complications, emergency hospital visits, and long-term disability, all of which drive up healthcare costs for families and employers alike.

Here’s how my friend Megan Pederson, Bleeding Disorders Alliance of North Dakota Board Member and mother of three sons with hemophilia, puts it: “Many people with a chronic illness depend on patient assistance programs. That’s why North Dakota should ban copay accumulators, forcing patients to spend more out of their pockets despite getting copay assistance. When you have a lifelong chronic illness, you can’t just stop going to the doctor.”

We can protect North Dakota patients by supporting HB 1216, legislation that ensures all payments – whether made by the patient or on their behalf – count toward their out-of-pocket expenses. Copay assistance programs do more than provide financial relief; they improve medication adherence, leading to better health outcomes and a stronger workforce.

No patient should have to choose between affording their medication and providing for their family. It’s time for North Dakota to stand up for patients and ban copay accumulators. I urge our lawmakers to support HB 1216 and protect those in our state who rely on life-saving treatments daily.