St. Louis — Patients For Affordable Drugs stood with Lora Moser, a cystic fibrosis patient unable to afford the medicines her family spent decades fundraising to develop, and launched a new campaign demanding that Vertex Pharmaceuticals lower the price of its life-extending drugs.

Moser and Patients For Affordable Drugs were represented Thursday at a meeting of the Institute For Clinical and Economic Review (ICER) by Juliana Keeping, mother to Eli, 5, who also has cystic fibrosis.

ICER, a drug pricing watchdog, published a new analysis May 3 that says Vertex cystic fibrosis drugs are overpriced by hundreds of thousands of dollars. Orkambi carries a list price of $327,000 per year, Kalydeco costs $384,000 per year, and Symdeko costs $350,000 per year, according to the the health care data firm Connecture. The analysis found that, to be cost effective, Orkambi would need to cost between $67,800 and $80,000, Kalydeco between $72,500 and $86,450, and Symdeko between $68,200 to $81,200.

Moser, 40, agreed that costs should be lowered.

“I have never felt more destitute and desperate than I do right now,” she said.

In January, the income requirement on a grant she used to afford her medicines changed without notice. She can no longer take Orkambi, which would cost $4,900 a month in co-pays with both Medicare and a private plan. Since the 1980s, Moser’s family has hosted an annual Cystic Fibrosis Foundation fundraiser to incentivize the creation of drugs like Orkambi. Cystic fibrosis is a fatal genetic disease that primarily impacts the lungs.

Patients For Affordable Drugs kicked off its campaign on May 17, the same day Vertex executives are attending an annual shareholders’ meeting at the company’s Boston headquarters.

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, according to news reports.

“The company obviously has room to lower the prices of its medicines. Vertex betrayed the worldwide cystic fibrosis community after it took charity dollars to create cystic fibrosis medicines and then priced the drugs at unconscionable levels,” said Keeping, who both owns stock in Vertex and has raised $90,000 to help fund a cure. “We can have the research we need to cure CF without costs like this. We must stay the course and protect one another from abusive pricing to make sure every person living with CF can get faster access to our drugs.”

As part of its new campaign, Patients For Affordable Drugs will:

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