Cancer patients were quick to praise a scathing report from the country’s leading oncologists decrying the skyrocketing cost of cancer drugs.
“[The report] is definitely a validation that these medications are ridiculously expensive,” said Erin Havel, a 38-year-old chronic myeloid leukemia patient from Seattle who had to declare bankruptcy due to the high cost of her cancer drugs. “Patients don’t really have much say. We should. We’re the consumers, but we’re more of a vehicle for companies to raise money. It feels like we’re a cash cow for Big Pharma.”
The editorial, published today in the journal Mayo Clinic Proceedings, was signed by more than 100 leading cancer experts from top treatment centers around the U.S., including six physician scientists Fred Hutchinson Cancer Research Center.
“The high prices of cancer drugs are affecting the care of patients with cancer and our health care system,” it stated. “This increase is causing harm to patients with cancer and their families.”
It goes on to matter-of-factly lay out the harsh financial realities many people face after a cancer diagnosis, a suite of diseases that will affect 1 in 3 individuals over their lifetime. While the cost of new drugs has soared to well over $100,000 a year, the out-of-pocket expenses patients are expected to bear have also gone up to 20 to 30 percent. Because of these costs, about 10% to 20% of patients with cancer do not take the prescribed treatment or compromise it.
Patient advocate Susan Rahn, a 45-year-old New Yorker who was diagnosed with stage 4 breast cancer in 2013, said she knows many patients who are overwhelmed.
“People will post pictures on Facebook and Instagram of all the bills they’ve gotten in the mail,” she said. "It’s all of their out-of-pocket costs. It can be financially devastating. People are talking about having to downsize, sell their homes. Others are concerned about making rent or moving back in with their parents. They don’t really have an option.”
The report was issued by 118 oncologists including Dr. Gary Lyman, co-director of the Hutchinson Institute for Cancer Outcomes Research (HICOR).
A patient with cancer who needs one cancer drug that costs $120,000 per year will have out-of-pocket expenses as high as $25,000 to $30,000 — more than half the average household income and possibly more than the median take-home for a year, according to the report.
”Patients with cancer then have to make difficult choices between spending their incomes (and liquidating assets) on potentially lifesaving therapies or foregoing treatment to provide for family necessities (food, housing, education),” it states.
HICOR Director Dr. Scott Ramsey called the report a clear call to action for patients, their care providers, and their loved ones.
“This is a reflection of the growing recognition by physicians that the drugs they’re prescribing are creating extreme financial hardship for patients and that the driver of this is the very high cost of the new products,” he said. “It’s great to see leaders in the clinical oncology community make this call to action.”
Ramsey, who was not a co-author on the report, praised it for shining a light on the extreme hardship many cancer patients face, a financial burden HICOR is attempting to assuage.
Havel was diagnosed with CML in 2007 and said the targeted therapy her oncologist prescribed, Gleevec, initially cost $3,000 a month. But the price soon began to rise.
“By 2008, it had jumped to $4,000 a month,” she told Fred Hutch News Service last month. “I thought this is crazy and then it jumped again. I had insurance but I started to get a lot of pushback.”
Havel was forced to use her credit cards to pay for her co-pays, out-of-pocket expenses, groceries and bills. Soon, she was in serious debt and forced to declare bankruptcy.
“People need to understand that this is a widespread problem,” said Ramsey, a health economist who found cancer patients were two-and-a-half times more likely to declare bankruptcy. “This lets patients know they’re not alone. The message to patients is that they shouldn’t be ashamed if they’re struggling with costs. It’s a problem that really didn’t exist 20 years ago. It’s frankly due to rising costs of cancer care, a major one being the drug costs.”
Pharmaceutical companies, however, have responded to favorable market incentives by continuing to raise their prices. According to the report, the average price of new cancer drugs has increased 5- to 10-fold over the last 15 years. A recent study found cancer drug prices had increased by an average of $8,500 per year over that period.
“It’s all set up for them to charge whatever they want and they’re just reacting,” Ramsey said. “And the insurance industry in some ways is not completely blameless in this situation. The whole thing is just a mess. Insurance companies aren’t behaving well. Pharma’s not behaving well.”
Progress, he said, will require patients and others to put pressure on the federal government to change laws.
The report offers a number of recommendations that would “allow market forces to work better.” They include a new process that considers value to patients and health care when proposing fair prices for new treatments, permitting Medicare to negotiate prices, allowing cancer drugs to be imported across U.S. borders from countries — such as Canada — where drugs are significantly cheaper, and more.
“At the moment, cancer drugs are not truly sold in a free market,” said Janet Freeman-Daily, a 59-year-old metastatic lung cancer patient from Seattle. “We have willing sellers but the buyers are under the gun. Allowing Medicare to negotiate drug prices seems like a reasonable first step to fixing this problem.”
Havel said the current system was flawed in so many ways, it was difficult to pinpoint how to fix it.
“Is Big Pharma the issue? Insurance companies? Hospitals? The cost of medical school in this country?” she asked. “It seems like when we go after one problem — insurance companies for example with the [Affordable Care Act] — another loophole is found to mess things up in a different way. It's good that Americans thrive on ingenuity, but when there is a lack of compassion and health care is treated the same way as selling cable television, there's a problem."
Grassroots movements like the one that prompted a recent Change.org petition advocating against the high price of cancer drugs are one way cancer patients can make their voices heard, the report pointed out.
“With proper support of these grassroots efforts … it should be possible to focus the attention of pharmaceutical companies on this problem and to encourage our elected representatives to more effectively advocate for the interests of their most important constituents among the stakeholders in cancer — American cancer patients,” it concludes.
HICOR’s Ramsey said he was “very sympathetic” for the patients and families caught in the middle, especially since they’re already facing major physical, emotional and psychological challenges.
“They’re caught in the crossfire of all of this and it’s the last thing [they] should have to deal with,” he said.
He also sees a role for patients — and their loved ones — in changing policy.
“I do think there’s a role for patients in speaking with their cancer care providers about this problem and for being more proactive,” he said.
And if patients are too sick to advocate for themselves?
“Cancer touches one in three Americans,” he said. “If you count the friends and family members of these patients, that’s a pretty big constituency.”
Have you been affected by the high costs of cancer care? Tell us about it on Facebook.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.