Seattle families face question: How much would you pay to live?

When Lisa and Carl Greene of Bellevue were expecting their first child, it felt like a storybook beginning.

“It was a time of incredible excitement and joy,” said Lisa Greene.

Weeks before her due date, life suddenly became an overwhelming challenge.  When tests revealed a serious intestinal problem, doctors performed an emergency cesarean section and within weeks discovered their son, Jacob, had cystic fibrosis. “It was devastating. It was just devastating,” said Greene.

Read pharmaceutical companies responses here.

Last year, the pharmaceutical company, Vertex, developed a breakthrough drug for CF with trials at Seattle Children's Hospital. The drug is called Orkambi. The federal government gave Vertex a big tax credit for developing a so-called "Orphan Drug" to treat a rare disease.

“The problem is the Orphan Drug Act doesn’t say anything about pricing those drugs,” said Fred Hutchinson health economist Dr. Scott Ramsey.  With great promise that Orkambi would help those people battling cystic fibrosis, Vertex became a hot stock on Wall Street.




Today, the cost of Orkambi is expensive. “Per year, $259,000 per child,” said Greene.


is grateful for Orkambi and the financial help she gets from Vertex. Greene describes it as a love-hate relationship with pharmaceutical companies.  “If my kids don’t get their medications, they will die. There’s no doubt about it.”

Dr. Robert Harrington, at Harborview Medical Center in Seattle, believes patients are being gouged by greedy drug companies. “Why isn’t that called greed? I think it is. Probably the executives of the pharmaceutical companies are more concerned with the shareholders than patients. I think the scientists and developers are probably more concerned with the patient.”

As Erin Havel sits in her Seattle condo, her dogs may protect her from intruders, but they can't shield her from the staggering price of prescription drugs.  Havel has leukemia and holds up the packet of the drug Gleevec that keeps her alive. “My 30 day supply for January is $9,681.  Every little pill in this saves my life every day,” said Havel.

Pharmaceutical company Novartis also got substantial "Orphan Drug" tax credits for developing Gleevec.  Like many pharmaceutical companies, Novartis maintains that research and development costs justify the price to patients.  “Even if you spend a billion dollars to develop a drug, and that can happen if you’re setting prices that high, you’ve recouped that investment, you know, in many cases in less than a year,” said Ramsey. The CEO’s of both Novartis and Vertex are making tens of millions of dollars a year and Ramsey maintains they are getting rich from the Orphan Drug Act.  “They are. Look at the salaries of the CEO’s of those Orphan Drug companies. I mean, they’re extraordinary.”




With the powerful lobby of Big Pharma, getting Congress to amend the "Orphan Drug Act" is an uphill battle.

The Greene family's life does not have a storybook ending. Last April. Carl Greene died unexpectedly. Lisa Green's family's health insurance is unclear in the years to come. "I can't help but wonder how much of this stress contributed to my husband's heart attack," said Lisa Greene.
While Erin Havel has co-pay assistance now, she has gotten a letter that says that financial help could be coming to an end. Her expensive struggle for survival is detailed in her book, "The Malformation of Health Care."  The cost of medicine sent Havel into bankruptcy. "The stress of not knowing how to cover the payments does feel like a gun to your head sometimes," said Havel.
"You can't lose sight of the fact, these are patients," said Dr. Gary Lyman, an oncologist at Fred Hutchinson Cancer Research Center in Seattle.  Lyman is disturbed by the costly direction of prescription drugs. "These are people and if you lose sight of that, no matter if you're a provider or drug developer, you've lost your moral compass."