U.S. taxpayers and patients — patients like Moser — raised funds for the basic scientific research to develop cystic fibrosis drugs like Orkambi and took on a huge share of the risk in the process. The New York Times reported “cystic fibrosis was not a priority for Vertex, and Vertex officials have said the program [to develop cystic fibrosis drugs] might have been dropped if the [Cystic Fibrosis] Foundation had not been paying for it.”
Even as patients like Moser are fighting for their lives because they cannot afford Orkambi, Vertex CEO Jeffrey Leiden recently announced a $500 million stock buyback program, has bragged to investors about $2 billion in cash reserves, and received a $78.5 million compensation package in 2017. Moser would love a chance to try a newer Vertex drug called Symdeko, but it lists for more than $300,000, and she cannot afford it.
“Corporations should not get to decide who lives or dies based on the goal of maximizing profits,” said Patients For Affordable Drugs Communications Director Juliana Keeping, whose son, Eli, 5, also has cystic fibrosis. “Patients’ lives shouldn’t be at the whim of drug corporations like Vertex.”
Patients For Affordable Drugs has been calling out Vertex and working to elevate patient stories to bring attention to the real world impact of sky-high specialty drug prices.
As part of its campaign to pressure Vertex, Patients For Affordable Drugs:
- Circulated a petition signed by 9,000 people asking Vertex to use its cash and corporate tax breaks to lower the prices of its medicines.
- Made common cause with groups attending the Vertex shareholder meeting in Boston demanding a more responsible approach by the company;
- Is using paid social media to draw attention to the injustice of Vertex’s prices;
- Is educating the cystic fibrosis community about Vertex’s abusive pricing practices;
- Is lending solidarity to patient groups abroad whose children are dying while Vertex stalls negotiations with small nations to maximize its bottom line for shareholders.