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ViewPoints: Patients with cystic fibrosis not alone in grappling with payer copay adjustment programmes
by Jessica D’Amico
Like so many others among the 40,000 Americans living with cystic fibrosis (CF), Molly and Emily Bonnell were waiting for a cure. While the advent of Vertex Pharmaceuticals’ CF transmembrane conductance regulator (CFTR) modulators in 2012 represented a major breakthrough, Kalydeco (ivacaftor) and its successors — Orkambi (ivacaftor and lumacaftor) and Symdeko (tezacaftor/ivacaftor and ivacaftor), FDA approved in 2015 and 2018, respectively — offered relatively modest efficacy and were not applicable to as large a population as Trikafta (elexacaftor/tezacaftor/ivacaftor).
“When Trikafta came out, I literally was sobbing because I thought finally my girls are going to live,” Molly and Emily’s mother Laura Bonnell, founder and president of The Bonnell Foundation, said. “It meant everything.”

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