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How a $150 million investment turned into $3.3 billion

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The Cystic Fibrosis Foundation has sold its royalty rights to a powerful game-changing drug that it helped fund and develop.

The national charity has flipped a $150 million dollar investment into a more than $3 billion dollar deal, a figure that’s more than 20 times the organization’s budget last year.

While the windfall means more money for research, the drug itself costs more than $300,000 and has been out of reach for some with this fatal disease.

Let’s face it, it’s a little unusual for national charities like the Cystic Fibrosis Foundation to team up with drug makers and start selling royalties.

But Dr. Ahmet Uluer of Boston Children’s Hospital says it’s good they did.

“Without this relationship this drug is not being developed. And we are maybe not where we are right now, looking at this ethical dilemma of pricing and availability to patients,” he says.

The question for some is whether the foundation has put its own health in front of people with this disease.

In Arkansas, Medicaid officials have denied the use of this treatment to three patients in part because the drug – Kalydeco – is so expensive.

University of Massachusetts’ Dr. Brian O’Sullivan says “this is a really thorny issue and certainly some of this money needs to go back to patient care and access to drugs.”

While Kalydeco helps a sliver of patients, O’Sullivan says the next generation of drugs could treat up to 50 percent, and they may be as expensive, so they may not be as effective.

That would mean lots of potential battles between the sick and insurers who are expected to pay the bill.

Vertex says it offers a patient assistance program to help cover costs. The company says virtually every patient who has been prescribed kalydeco in the U.S. has access to it.


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