Seen on KIRO 7

How much would you pay to live? Pharmaceutical companies respond

Lisa Greene is a mother in Bellevue who has two children with cystic fibrosis. When a breakthrough drug was released last year, it was a godsend, but it came with a high price tag.

In a KIRO 7 News investigative report, families in the Puget Sound region shared their story of live-saving drugs and the price they are paying for them.

Read the full report here.

Below hear more from those families, local doctors, and see the response from pharmaceutical companies.

Bellevue mother shares story with children living with Cystic Fibrosis

Jacob and Kasey Greene both have Cystic Fibrosis and take the drug Orkambi.  Pharmaceutical company, Vertex, charges $259,000 for a one-year supply of the drug.  The Greene family has insurance and gets assistance to pay for Orkambi.

We asked Vertex to answer these three questions.  The company’s response follows.

-How did Vertex set the price for Orkambi?

-Why is the drug so expensive?

-How long did it take Vertex to recoup the research and development costs of Orkambi?

Statement from Vertex Pharmaceuticals:

"By targeting the underlying cause of cystic fibrosis, our medicines provide significant benefits to patients and are fundamentally changing the way the disease is treated. We are fully committed to helping eligible patients get our medicines while continuing to invest hundreds of millions of dollars in scientific research to discover and develop new medicines for people living with this rare disease."

Leukemia Patient charged $9,681 a month for drug

Erin Havel has Leukemia and takes the life-saving drug Gleevec. Pharmaceutical company, Novartis, charges $9,681 a month for the drug.  Havel gets co-pay assistance to help her with the cost of Gleevec.

We asked Novartis to answer these three questions.  The company’s response follows.

-How did Novartis set the price for Gleevec?

-Why has the drug been so expensive?

-How long did it take Novartis to recoup the research and development costs of Gleevec?

Statement from Novartis Pharmaceuticals:

"At Novartis, we price our medicines in consideration of the value they bring to patients and society. When setting the prices of our medicines, we consider multiple factors including the scientific innovation they represent, the growing cost of operating at the highest standards, and the significant investment in clinical studies to develop novel and current treatments to find ways to make more cancers survivable.

In assessing the price of any innovative medicine, it is important to consider the full life of the product, not just those years protected by patents. For example, once a medicine becomes generic, Novartis' innovation becomes part of the public domain and generic manufacturers are then able to produce and supply the medicine at a very low cost, contributing significant value to society overall and to the sustainability of our healthcare system.

Gleevec® (imatinib mesylate) is a life-changing medicine that in most cases has helped turn chronic myeloid leukemia (CML) from a once fatal condition into a manageable disease. Today, nine out of ten CML patients live a near normal lifespan.

We understand and empathize with the hardship of living with cancer. We also understand that the cost of medicines can be challenging to patients. We are committed to ensuring that all patients have access to their medicines. The majority of CML patients in the US pay less than $100 out of pocket per month.  We also offer an extensive assistance program that provides our medicines for free or at a reduced cost to those who can't afford them. We have provided our CML medicines free to an average of 5,000 uninsured or underinsured patients in the US annually for the past six-and-a-half  years, amounting to more than $1 billion in free medicine. Globally, nearly one third of the Gleevec produced annually is provided at no cost, to date reaching more than 50,000 patients in over 80 low-income countries.

We continue to invest in new treatments to find ways to make more cancers survivable. Our investment in Gleevec research has continued over the past 14 years. Additional clinical trial programs have resulted in the approval of Gleevec to treat five more rare cancers. Sales are also funding the next generation of innovative treatments including clinical trials to explore a new investigational compound for CML."

Pharmaceutical Research and Manufacturers of America on how people can access patient assistance programs if they are having problems affording their medicines:

"The most centralized place for people to go is the Partnership for Prescription Assistance, which is a single point of access to more than 475 public and private programs, including nearly 200 offered by biopharmaceutical companies. The program allows patients to go to one central place, fill in some basic information, and find out whether they may be eligible to apply for assistance. They can also download applications and find info about local community clinics that may be able to help them. It can be found at www.pparx.org."

"There is also a Washington-state based program called the Prescription Drug Assistance Foundation. More info is here: https://prescriptiondrugassistance.org/."

Fred Hutchinson Cancer Research Center’s Dr. Scott Ramsey on drug pricing  

"Since Gleevac has been put on the market, its price has more than tripled. In fact, it's increased 40 percent in the last two years.  Now it doesn't cost them any more to make that drug.  In fact, it probably costs less over time. So, that's really taking advantage of the situation and trying to make maximal profits," he said.

"A lot of the drugs that we're talking about here, cost pennies to a couple dollars to make that are being charged 10, 15-thousand-dollars a month." 

Fred Hutchinson Cancer Research Center Oncologist Dr. Gary Lyman on drug pricing 

"Greed is a major or a primary driver of the pricing that's put on these drugs.  It's far above and beyond what they need to recoup in terms of research and development.  I have had patients that just have not been able to get it and just can't afford it and they will eventually go on to progress with their disease,"  he said.

Harborview Medical Center Dr. Robert Harrington on drug pricing   

“Drugs that are used for conditions that are rare or that are only used a few times are unappealing to pharmaceutical companies. And I think to compensate for that they make the price extraordinary and I think it's probably much out of line with the actual develop and production costs for those meds," he said.

"I think they're taking advantage of the American health care system and they're getting profits out of it because it's a competitive system rather than a socially equitable system.  If we had a national health care system, single party payer, we'd probably be in a stronger position to negotiate prices with pharmaceutical companies for their medications."