WASHINGTON, DC — Patients For Affordable Drugs delivered a 9,000-signature petition to Boston-based drugmaker Vertex that asked the company to lower the prices of its charity-funded cystic fibrosis drugs.

The petition comes as ICER, a drug pricing watchdog, published an analysis on May 3 that said Vertex cystic fibrosis drugs are overpriced by at least 400 percent. These drugs include Orkambi with a list price of $327,000 per year, Kalydeco which costs $384,000 per year, and Symdeko which costs $350,000 per year, according to the the health care data firm Connecture. The ICER analysis found that, to be cost effective, Vertex should be charging hundreds of thousands less – Orkambi should cost between $67,800 and $80,000, Kalydeco between $72,500 and $86,450, and Symdeko between $68,200 to $81,200.

As a result of Orkambi’s price, Lora Moser, 40, a cystic fibrosis patient from Texas, is unable to afford the medicine her family spent decades fundraising to develop. Lora told The New York Times, “I’ve never felt more destitute and hopeless as I do right now, from a medical standpoint.”

Lora signed the petition along with patients and supporters from around the U.S.

U.S. Taxpayers, charitable donations and patients took on a huge share of the risk in developing cystic fibrosis drugs. Taxpayers and charitable donations paid for much of the foundational science behind Orkambi, Kalydeco and Symdeko from donations through the Cystic Fibrosis Foundation (CFF), which were tax deductible, and from the National Institutes of Health (NIH). The New York Times reported “cystic fibrosis was not a priority, and Vertex officials have said the program might have been dropped if the foundation had not been paying for it.”

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. 

“Vertex can afford to lower the prices of its promising medicines. Instead, the drug corporation has chosen to hold patients like Lora hostage over the prices,”  said Patients For Affordable Drugs Communications Director Juliana Keeping, whose son, Eli, 5, also has cystic fibrosis. “We are a rare disease community, and we must speak out when any single one of us falls victim to abusive pricing. It can’t stand. Every person living with CF must have access to our drugs.”

The petition delivery concludes a campaign in which Patients For Affordable Drugs:

• Elevated patient stories to bring attention to the real world impact of sky-high specialty drug prices and asked Vertex to use its cash and corporate tax breaks to lower the prices of its medicines;
• Circulated a petition asking Vertex to lower the price of its drugs;
• Used paid social media to draw attention to the injustice of Vertex’s prices;
• Educated the cystic fibrosis community about Vertex’s abusive pricing practices;
• Made common cause with groups attending the Vertex shareholder meeting in Boston demanding a more responsible approach by the company;
• Lent solidarity to organizations abroad whose children are dying while Vertex stalls negotiations with small nations to maximize its bottom line for shareholders.