Mom To Vertex -"We're Middle Class And We're Screwed"

On October 10, Juliana Keeping traveled from her home in Oklahoma to Boston with her four-year-old son, Eli, who has cystic fibrosis. They delivered a scroll of a Change.org petition addressed to Vertex CEO Jeffrey Leiden and bearing nearly 125,000 signatures protesting the $259,000-per-year cost of Vertex’s two-drug combo to treat CF, Orkambi. They met with four members of Leiden’s team, including Jeffrey Chodakewitz, chief medical officer, and David Altshuler, the chief scientific officer. And while Eli had a great time running around the conference room in his Hamilton costume (which plans to wear again for Halloween trick-or-treating), Keeping was reduced to tears, she says. Pharma company executives “have the power to ruin my family financially,” she says. “It’s terrifying. When someone is sick and it’s not their fault….We’re middle class and we’re screwed—and drug prices are a big part of that.”

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