Help me clarify something. This is my understanding of how the drugs Kalydeco and Orkambi came into existence, and how the relationship between the Cystic Fibrosis Foundation from the US and Vertex, the pharmaceutical company that developed the drug, evolved over time.

My understanding is we, the patients with CF, were ultimately screwed by both organisations. Obviously we weren’t screwed by the creation of an incredible and potentially life saving drug. Rather, I’m looking at the current state of affairs and some of our inability to attain the drug. But I want you to show me how I’m wrong, please.

CF Foundation (US) invested $150m in a startup biotech company in the 90s — Vertex. Vertex then spent approx 14 years developing Kalydeco. As it started being used, the value of the the royalties, held by CF Foundation, increased to the point that CF Foundation SOLD the rights for $3.3b. This was enough to keep the Foundation running for 20 years. They did this in 2014. The next year, 2015, the cost of the drug rose to $300,000 per patient per year.

Vertex executives then started cashing in their stock options. They “grossed more than $100 million by cashing in stocks and stock options” and at “one point, the value of company’s stock increased more $6 billion in a single day.”

Leaving the US CF Foundation with an operating budget for 20 years, Vertex executives rich, but patients with CF around the world stuck with a drug too expensive to afford.

I fear that it was folly, short-sighted or perhaps naive for the CF Foundation to sell their rights. They went the quick cash grab rather than holding on to both a financial boon and a tool of negotiation over Vertex. By owning the rights, they could have wielded things like taking less royalty to allow better access to patients. It’s like saying, “Oh, we could remove the problem of our constituency, or keep their problem going so we can continue to exist.”

There are the obvious problems of a drug company charging so much that patients cannot access the very benefit Vertex spent 14 years investing in relieving, or as doctors who wrote a letter to Vertex put it:

“We are aware of the financial complexities of the huge expenses for R & D with respect to the small number of patients or the market system that enables these advances to become reality. Yet — notwithstanding all your patient support programs — it is at best unseemly for Vertex to charge our patients’ insurance plans (including strapped state medical assistance plans), $294,000 annually for two pills a day (a 10-fold increase in a typical patient’s total drug costs). This action could appear to be leveraging pain and suffering into huge financial gain for speculators, some of whom were your top executives who reportedly made millions of dollars in a single day (Boston Globe, May 29).”

— David M. Orenstein, MD et al.

My concern, my understanding of this sequence of events, is that the story of Kalydeco and Orkambi is a sad tale of a community showing good faith and investing in a company, then getting reamed afterwards because of their naiveté. Please show me how I’m wrong.