“It’s a way for several parties in the supply chain, whether the insurer or the pharmacy benefits manager, to shift the cost onto the patient and away from themselves,” Schultz said. The government doubled down in May 2021 in a new Health and Human Services report that left the copay accumulators intact. The decision effectively rubber stamped copay accumulator programs without restriction, said Steven Schultz, director of state legislative affairs for the Arthritis Foundation and co-chair of the All Copays Count Coalition. The surge in local legal action comes in the wake of a federal decision in 2020 that gave certain health plans, including those sold on the Affordable Care Act exchanges, the ability to exclude copay assistance from counting toward deductibles. Prodded by the dozens of research, disease and advocacy organizations that compose the All Copays Count Coalition, another 20-plus states are considering similar bans on copay accumulators. So far, six states have passed legislation that requires health plans to count the value of any copay assistance - manufacturer coupons, nonprofit assistance programs, or prescription discounters such as NeedyMeds, toward patient deductibles. It’s also spurred a movement to ban the practice by insurers and pharmacy benefit managers, the middlemen who manage drug benefits for health insurance companies, particularly at the state level. But at the same time, I can’t use the savings that are out there. “I get to my deductible faster, and then it’s covered 100 percent. “It’s a double-edged sword,” Freeborn said. It’s a bind patients of all kinds have increasingly found themselves in and are fighting back against. So until Freeborn has met her deductible, there’s no real benefit to, say, going through GoodRX, where she would pay $1,200 rather than $2,700 for the same supply of insulin. Called a copay accumulator adjustment program, or CAAP, it basically forces a patient to pay in full for a medicine upfront or pay later in the form of other out-of-pocket costs that insurers have decided can count toward deductibles. Making matters worse is a little-known loophole in her health insurance plan that prevents Freeborn from applying any financial break she might get toward her Blue Cross Blue Shield deductible. Because of the form of insulin she requires - vials and a pump rather than injections - she also doesn’t qualify for the drug manufacturer’s patient assistance program. Unfortunately, the mother of three, whose own dad died from diabetes when she was six, can’t use one of the less expensive generics, which don’t work for her. But she’s still shelling out $2,700 for a three-month supply of Humalog insulin, at least until she reaches her $4,000 deductible every year. She has a good job, relatively good health, and, by most measures, good health insurance. Now a 36-year-old music teacher in Lee’s Summit, a suburb of Kansas City, Mo., Freeborn is still worrying. When Jenny Freeborn was 17, a primary care physician sat across from her and her mother and said the words that would leave her worried about medical bills for the rest of her life: You have Type 1 diabetes.
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