An Oklahoma woman is petitioning Boston-based Vertex Pharmaceuticals over an issue gaining increasing traction: sky-high prescription drug costs.
Juliana Keeping, a journalist and blogger from Oklahoma City, is the mother of a little boy, Eli, who has cystic fibrosis, a genetic condition that causes lung infections, makes breathing difficult, and eventually leads to respiratory failure. Keeping started a Change.org petition to protest the exorbitant costs of cystic fibrosis medication manufactured by Vertex.
“When I found out Vertex Pharmaceuticals had finally developed two Cystic Fibrosis drugs that could help extend his life, I was thrilled,” she writes. “But then I heard their price tags—the cheapest one costs $286,000 a year [emphasis hers]. I was dumbstruck. How could my family—how could any family, for that matter—ever afford them?”
In the petition, Keeping implores Vertex CEO Jeffrey Leiden to reconsider the drugs’ pricing, particularly since development was partially funded by charitable donations from the Cystic Fibrosis Foundation.
“We are grateful to Vertex for creating invaluable medicine that will help our loved ones live longer, more fulfilling lives,” Keeping writes. “But if we cannot afford it, it’s as if it doesn’t exist at all [emphasis hers].”
The petition has already gained more than 124,000 signatures, and Keeping writes in it that cystic fibrosis doctors have also called on Vertex to adjust its pricing. Keeping’s note is doubly topical given the ongoing debate around Mylan, the manufacturer of the EpiPen.
Keeping and Eli are in Boston today to present the petition at Vertex. You can read the full document, and add a last-minute signature, here.
Source URL: https://www.bostonmagazine.com/health/2016/10/10/cystic-fibrosis-drugs/
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