Frustrated by the price of a lifesaving cystic fibrosis treatment sold by Vertex Pharmaceuticals, a group of families is working with a generic manufacturer to revive a buyer’s club and distribute the medication in countries where the cost is out of a reach.
The generic version of Trikafta will be priced at $6,375 for a child and $12,750 for an adult per year, compared with a list price that exceeds $300,000 annually in the U.S. And the drug will be made by Beximco Pharmaceuticals, a generic company based in Bangladesh, according to patient advocacy groups involved in creating the club.
“This is a historic moment,” said Gayle Pledger, who heads the Right to Breathe campaign and is based in the U.K., in a statement. “We’ve watched children suffer and die while a treatment sat on the shelf, priced out of reach. Today, that changes. We’ve proven that patient power can change what billion-dollar corporations refuse to.”
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