Copay accumulator adjuster and maximizer policies pose a serious threat to people with chronic diseases by exposing them to high, unexpected costs and interrupting treatment. Advocating on the state level is critical to push through legislation to ban these policies.
“State advocacy is every bit as important as federal advocacy because states often have more authority over issues that impact people’s daily lives,” says Bill Robie, senior director of state government relations at the National Bleeding Disorders Foundation.
Here are three chapters that are leading state efforts to ban copay accumulator adjuster policies.
BLEEDING DISORDERS ALLIANCE OF NORTH DAKOTA
Emily Ouellette, executive director of the Bleeding Disorders Alliance of North Dakota, has a husband with severe hemophilia, and their two daughters are carriers. “Without medication to aid in clotting, a minor injury for most people could be life-threatening to him,” Ouellette says.
“North Dakota prides itself on being a business-friendly state, but failing to ban copay accumulator programs does not support businesses or employees,” she says. “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 health care costs for families and employers alike. No patient should have to choose between affording their medication and providing for their family.”
Learn more about the Bleeding Disorders Alliance of North Dakota.
HEMOPHILIA ASSOCIATION OF NEW JERSEY
The New Jersey Chapter regularly meets with legislators from across the state to educate them on what copay accumulator adjuster programs are and why they’re harmful to the bleeding disorders community. For Executive Director Stephanie Lapidow, sharing one’s own story about living with a chronic illness and the challenge of paying for necessary medications is key to getting the point across.
“Advocacy is only as good as the personal stories shared with changemakers,” Lapidow says. “Anyone can speak passionately about an issue, but unless you have someone speaking up who has experienced it firsthand, it’ll only get you so far. Use your voice for good, and the change will follow.”
Learn more about the Hemophilia Association of New Jersey.
GATEWAY BLEEDING DISORDERS ASSOCIATION
The Gateway Bleeding Disorders Association (GHA) is supporting four pieces of legislation in Missouri to ensure all copays count toward a patient’s deductible.
By participating in Washington Days, Missouri Advocacy Day, and collaborating with Bleeding Disorders Alliance Illinois on the first joint Illinois Advocacy Day, the chapter has made a strong impact on raising awareness and pushing for change.
Bridget Tyrey, executive director of GHA, stresses that while participating in advocacy days is meaningful, a sustained commitment is what leads to lasting change. “Advocacy isn’t a day, but a continuous effort,” Tyrey says. “It’s about showing up consistently, listening, learning, and supporting those who need a voice.”
Learn more about the Gateway Bleeding Disorders Association.