![]() According to a 2023 report from The AIDS Institute, at least two-thirds (64%) of health plans in the country include a copay accumulator policy. Since then, copay accumulator programs have become common. “We knew then that there would be severe unintended consequences for both the patient and self-funded plans.” “In November 2016, we noticed some benefit changes to one plan around copay assistance and it not accumulating toward a patient’s out-of-pocket deductible,” says Kollet Koulianos, MBA, who until recently was the vice president of payer relations at the National Hemophilia Foundation. Accumulator programs shift costs to patients, and critics say these programs amount to double dipping because the plan is getting both the value of the copay and the patient deductible. Over the past several years, PBMs have implemented restrictions that make patients such as Loving and her family responsible for more of the cost of specialty medications.One such restriction that has impacted Loving’s family is called a “copay accumulator,” which prevents copay assistance from counting, or accumulating, toward the family’s deductible. “We were not educated to know and listen to some of the cues, and we did not treat my son because treating him would be costly,” she says. ![]() “Unfortunately, in the last six months, I was (also) hit with the fact that I had made a bad mom choice.” Loving is referring to the fact that she didn’t immediately take her 9-year-old son, Kason, who has von Willebrand disease, to the doctor when he complained about shoulder pain after he had fallen on the playground. “I can count numerous times where we’ve had to pick between getting groceries for the week or doing a treatment,” says Loving. Now her daughter Katy’s most recent copay was $5,000 for four weeks of medicine. I didn’t - still don’t - feel I understand any of this mess. “Originally, we thought it would make more sense (not to use copay assistance), but this may have been an uneducated decision. “We needed to meet the deductible to assist with all the other appointments and meds we utilize as a family,” she says. The family has a high-deductible plan through the employer of Loving’s husband: $9,100 for an individual and $18,200 for the family, the out-of-pocket maximums set by the Affordable Care Act. (The family’s specialty pharmacy is Accredo.) So Loving and her family decided not to use the copay assistance anymore. “When that ran out, our portion was about $300 a week,” she adds.īut Blue Cross and Blue Shield of Alabama, Loving’s insurance company, and the pharmacy benefit manager (PBM) Express Scripts changed their policy and have implemented a program in which the copay assistance doesn’t count toward the family’s deductible. ![]() In previous years, Loving says they would use the copay card when it counted toward their out-of-pocket deductible. It’s expensive, but CSL Behring GmbH, Humate-P’s manufacturer, offers copay assistance of $10,000 a year. Two of Loving’s children take Humate-P, a von Willebrand factor/factor VIII replacement therapy. Loving and three of her eight children have been diagnosed with von Willebrand disease, which is a bleeding disorder characterized by low levels of von Willebrand factor, a protein that helps blood clot. ![]() Because of the cost, she has made the decision to focus on making sure her children have the medications they need instead. Note: This story was previously published on the Formulary Watch website.īrooke Loving has been diagnosed with von Willebrand disease, but she doesn’t take the medication that would keep her blood disorder under control.
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