St. Louis Reporter

Bridget Tyrey, the executive director of the Gateway Hemophilia Association (GHA) in St. Louis, said that if pending state legislation isn't passed to require health insurers to accept all copay assistance funds, "patients will basically pay twice, first with their copays assistance card, second from the patient."

Her comments come as the Missouri state legislature considers two bills, SB 844 and HB 1628, which would require health insurers to put all copay assistance payments toward patient deductibles and out-of-pocket maximums in the state. 

“If this legislation is not passed and copays aren’t counted towards a patient’s deductible the patient will have to basically pay twice, first with their copays assistance card, second from the patient,” Tyrey, whose son has hemophilia, told St. Louis Reporter. “Patients already have extra medical costs, have went through pre authorization, step therapy, this is another barrier to receiving their life savings medication.”

The Missouri bills were introduced to address Copay Accumulator Adjustment Programs, or CAAPs, which allow health insurers to exclude copay assistance funds from patients’ out-of-pocket costs. Nineteen states, said Tyrey, have already banned CAAPs.

While some health insurers say banning CAAPS would result in higher insurance premiums, a May 2023 analysis by The AIDS Institute found "no evidence that enacting a copay accumulator adjustment ban has a meaningful impact on average premiums." That analysis looked 16 states that banned CAAPS between 2019 and 2022.

Tyrey said that many patients rely on CAAPS to afford specialty medications, which often lack generic alternatives. An analysis of Missouri's 2023 ACA plans revealed that CAAPs feature in 8 out of 10 plans, potentially leaving patients responsible for out-of-pocket costs of up to $9,450 per person or $18,000 per family in 2024.

A recent study conducted by the National Hemophilia Foundation found that 69% of patients who depend on financial assistance to afford their medications make less than $40,000 a year.

According to GHA, Missouri health plans that include CAAPs are Ambetter/Celtic, Anthem, Blue Cross Blue Shield KC, Cigna, Cox, Medica, Oscar, and United Healthcare. 

Founded in 1969, GHA serves individuals and families affected by hemophilia and other inherited bleeding disorders. Established to provide support, education, and advocacy, the organization operates within the Missouri and Illinois regions. It offers a range of programs including emergency financial assistance, educational workshops, and community events aimed at enhancing the quality of life for those it serves. The association also focuses on raising awareness about bleeding disorders and fostering a supportive community network.