found 83% of commercial health plans in the U.S. Avalere - a healthcare business consulting firm headquartered in Washington, D.C. In recent years copay accumulators have become increasingly common among insurance and PBMs for people with chronic diseases in the U.S. About a quarter of the funding for the group comes directly from pharmaceutical manufacturers, which she says helps the group serve their members. Since 2014, she’s been the executive director of Pacific Northwest Bleeding Disorders, a nonprofit group that’s been working with Gelser Blouin to ban the practice. The average Oregon family’s deductible in 2019 was $3,634, and in 2020 the maximum out-of-pocket cost was $16,300 for family plans.įor McGuire Smith, the personal is also professional. The company was able to collect $15,000 of assistance from the manufacturer, although McGuire Smith’s family only needed $5,000 of the assistance to meet their out-of-pocket maximum and have their insurance cover the treatment.Īccording to the National Hemophilia Foundation, the average annual cost of clotting factor for a person with severe hemophilia is roughly $300,000. “So they held us hostage,” McGuire Smith said. The $15,000 wouldn’t count towards their out-of-pocket maximum, now $5,000. McGuire Smith said the intermediary company distributing the treatment - a pharmacy benefit manager, or PBM, - refused to release the treatment unless McGuire Smith signed up for the assistance program, giving the $15,000 in assistance to the company. After being treated, her son required at-home treatment, which would have cost their family approximately $147,000 without insurance coverage. In early 2020, McGuire Smith’s son with hemophilia went to the hospital for a life-threatening bleed in his GI tract. The new assistance trend also included medications for hemophilia, which McGuire’s other son has. The manufacturer began offering $10,000 a year in patient assistance for the medication, a relief for her family because it helped them meet their out-of-pocket costs without spending their entire savings each year. We could never really do much because we spent all of our time trying to save the money,” McGuire Smith said. McGuire said her family always hit their out-of-pocket maximum of $7,500 in January. “They are just desperate for a solution that allows them to fill the prescriptions they desperately need.”īefore 2013, McGuire Smith’s family paid approximately $5,000 per dose per child for the factor to treat their three children with Von Willebrand disease. They don’t care about the tug of war between manufacturers and insurers,” she said. Gelser Blouin said she’s pushing against accumulators not for drugmakers, but for the people who need treatment. The federal government has adopted its own version, sparking a drugmaker lawsuit. Drugmakers responded with patient assistance programs to fund copays, often using nonprofit patient groups as intermediaries to circumvent federal kickback laws.Ībout four years ago, insurers responded with copay accumulator rules, knocking down drug prices. Years ago, insurers responded to the trend by requiring patients to pay hefty copays for costly drugs. in ways that experts call unjustifiable - putting pressure on patient care across the system. To maintain high profit margins, drugmakers have increasingly boosted drug prices in the U.S. The battle over the practices is the latest manifestation of a struggle between pharmaceutical companies and insurers - one that leaves people like McGuire Smith and her family caught in the middle. Sara Gelser Blouin, D-Corvallis, to pursue legislation to add Oregon to that list of states. Now several patient advocacy groups, including some that receive funding from drugmakers, have joined with Sen. This under-the-radar practice, called a “copay accumulator,” is banned in 14 states and Puerto Rico. But a company working as an intermediary with her insurer has adopted rules prohibiting that assistance from counting toward their deductible or out-of-pocket maximum- meaning the family pays either way. McGuire Smith and her family qualify for a patient assistance program funded by a drug manufacturer to offset or eliminate their copay on expensive medications. These disorders are often difficult and expensive to treat - and living in Oregon adds to the challenges. Madonna McGuire Smith’s four children and husband all have lifelong bleeding disorders.
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