Why won’t the Cystic Fibrosis Foundation comment on the high price of the new Vertex drug?

Robert Weisman of the Globe reports today:

California scientist Paul M. Quinton learned that he has cystic fibrosis at age 19 and has spent his long career in his lab working on ways to cure it.

He is, in short, not the kind of person you’d expect to be fighting with Vertex Pharmaceuticals Inc., the company developing a new class of breakthrough drugs for the obstructive lung disease.

But he and a group of prominent cystic fibrosis doctors are doing just that. For the past three years, they have engaged in a private and largely fruitless dialogue with Vertex over their complaints that the Boston biotechnology firm is overcharging for its medicines.

At the end of the story he checks in with the group  that represents the interests of patients. They don’t say much:

A spokeswoman for the Cystic Fibrosis Foundation wouldn’t comment specifically on the price of Orkambi. But in a statement, the foundation said that the cost of doctors, hospitals, drugs, and diagnostics together places “a tremendous financial burden on people with the disease and their families.”

Worth noting that the CFF’s so venture philanthropy — non-profit investment in drug development — let to the ultimate development of one of Vertex’s CF drugs the new drug. A Nov. NYTimes story notes the foundation expected to receive $3.3 billion from selling the rights to the royalties to those drugs.

Proponents say it speeds drug development while also providing potential monetary rewards that can pay for even more research.

But there is some concern that a profit motive could divert the organizations from their primary mission — helping patients — and create a conflict of interest. For instance, the price of the main drug developed through Cystic Fibrosis Foundation’s investment is $300,000 a year. Kalydeco treats the underlying cause of cystic fibrosis 

Critics say that perhaps because a higher price means higher royalty payments, the foundation did not do enough to bring the cost down.

“I would like to see them do more to get the price of this drug down to something that is going to be sustainable,” said Paul M. Quinton, a cystic fibrosis researcher at the University of California campuses in Riverside and San Diego, who has the disease himself. “And I have some concern about the possible appearance of a conflict.”

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