Cruel choices: Buy lifesaving meds or groceries?

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Cruel choices: Buy lifesaving meds or groceries?

Cancer patients are often ‘collateral damage’ of drug-pricing war

June 3, 2015
Cancer survivor Erin Havel

"I ended up on food stamps. It was humiliating," said cancer survivor Erin Havel, who wrote a book about her firsthand experience with the financial toxicity of cancer treatment.

Photo by Auston James

The annual meeting of the American Society of Clinical Oncology, which ended Tuesday, created plenty of buzz with regard to new advances in immunotherapy and other promising cancer treatments.

But the high cost of these new pharmaceuticals also took center stage.

“These drugs cost too much,” Dr. Leonard Saltz, chief of gastrointestinal oncology at Memorial Sloan Kettering Cancer Center, told oncologists in what has been called a “blistering” speech on the skyrocketing cost of cancer drugs. “The unsustainably high prices of cancer drugs is a big problem, and it’s our problem … Cancer-drug prices are not related to the value of the drug. Prices are based on what has come before and what the seller believes the market will bear.”

Dr. Gary Lyman, an oncologist and health economist with Fred Hutchinson Cancer Research Center who was at ASCO2015, said he fully agreed with Saltz’s comments.

“In the last few years we’ve seen a dramatic rise in the cost of cancer care, especially around cancer drugs and an increasing disconnect between the price of new therapeutic agents and their actual value to patients in terms of longevity or quality of life,” he said.

‘This is crazy’

Erin Havel, a 38-year-old chronic myeloid leukemia patient from Seattle, knows about the high cost of cancer drugs firsthand.  After she was diagnosed with CML in 2007, she was put on a then-new drug called Gleevec, which at the time cost $3,000 a month.

But then that price started to go up.

“By 2008, it had jumped to $4,000 a month,” she said. “I thought this is crazy and then it jumped again. I had insurance but I started to get a lot of pushback. They would send letters saying I would have to try alternate ‘step’ therapies such as interferon, which was no longer the standard of care because it didn’t work for CML. They would ask, ‘What are your other options?’ Gleevec was the first treatment for CML that worked."

As the price of Havel’s cancer drug continued to rise, she turned to Novartis, the maker of Gleevec, for financial help but didn’t qualify. She reached out to nonprofits for assistance and applied for Medicaid. She didn’t qualify for that either. Desperate, she began to pay for her medication with her savings and charged everything else. 

“I was constantly putting things on credit cards – co-pays, out-of-pocket expenses, groceries and bills,” said Havel, who had to quit her job as an office assistant due to her illness. “I ended up on food stamps. It was humiliating.”

Unable to work, stonewalled by her insurance company and $40,000 in debt, Havel finally filed for bankruptcy, a common occurrence with cancer patients. A study by the Hutchinson Institute for Cancer Outcomes Research, in fact, found that cancer patients are two-and-a-half times more likely to declare bankruptcy than those without cancer.

After two years on Social Security disability, she was finally able to get on Medicare, which helps pay for her ongoing treatment (“The last time I checked, Gleevec was $8,500 a month,” she said) but she still calls her experience both “horrifying” and unsustainable. The struggle impacted her so much, in fact, she wrote a book about it.

“It’s one thing to go through cancer and only have to take the medications for three months or six months or nine months and then you’re done,” she said. “You can deal with the financial aftermath. But when you don’t have a break, it’s different.  I’m on my medication every day for the remainder of my life, provided it doesn’t stop working. If it does, the other drugs cost upwards of $13,000 a month.”

Dr. Gary Lyman

"In the end, it's about patients and their access to care, their ability to continue appropriate treatment, and the impact of financial distress and interrupted care on their quality of life and actual survival,” said Dr. Gary Lyman, co-director of the Hutchinson Institute for Cancer Outcomes Research.

Photo by Bo Jungmayer / Fred Hutch News Service

Bringing an end to financial toxicity

As co-director of the Hutchinson Institute for Cancer Outcomes Research, Lyman and his colleagues are trying to reduce just this type of financial toxicity.

“The issue about the rising cost of cancer care is certainly about the increasing cost of cancer drugs and the pharmaceutical industry,” he said. “However, it’s not just about the cost of drugs. It’s about the costs of diagnostic tests and imaging; it’s about the cost of hospitalization; it’s about efforts to reduce competition among providers and institutions; and it’s about government and regulators’ inability to negotiate the price of cancer drugs as in other countries.”

HICOR is trying to address these areas by bringing together stakeholders in cancer care – including patients, providers, payers and policymakers – to share cancer-related data, crunch the numbers and ultimately find ways to both improve cancer care and bring down skyrocketing costs, which are estimated to reach $175 billion by 2020.

“In the end, it’s about patients and their access to care, their ability to continue appropriate treatment, and the impact of financial distress and interrupted care on their quality of life and actual survival,” Lyman said via email.

“In the end, it’s about families going into bankruptcy; it’s about our children being left with a huge economic burden and an uncertain future left to them by the present generation; and it’s about all of us and society as a whole being willing to make the hard choices to reform a health care system that leaves so many patients without appropriate care or in inconceivable emotional and financial distress at the very time when they have the greatest need in facing what is often the most difficult time they will ever experience.”

‘A pretty small cog’

Dr. Scott Ramsey, who co-directs HICOR with Lyman, said the institute would continue to publish research and thought pieces  regarding the high cost of cancer drugs and work with both patients and doctors on better transparency around cost so they could make the best possible treatment decisions.

But HICOR, he said, was a “pretty small cog” when it came to changing the way Big Pharma prices cancer drugs.

“Pharma can charge what they think the market will bear,” he said. “And the repercussions for patients and society are huge. The corporations are going to play the cards based on what we’ve dealt them as a society, and we’ve dealt them very generous cards in terms of what they’re allowed to do with setting prices. There’s very little restraint. Until we change that equation, I don’t think any amount of shaming is going to be helpful. There have been a lot of attempts at shaming in the press, by [physician] Peter Bach in The New York Times, and a large group of hematologists in a Blood editorial. But it won’t help.

“All we can do is research and try to improve the transparency of what’s going on,” he said. “That’s our role.”

Ramsey said he definitely sympathized with patients like Havel, who undergo treatment then end up in severe financial distress.

“Unfortunately, that’s what’s happening,” he said. “[Patients] are the collateral damage of this pricing war right now.”

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 dmapes@fredhutch.org.

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