In the age of $10,000-a-month cancer drugs and health plans that shift more of the cost of health care onto patients, research suggests we've been underestimating one of cancer's real harms: "financial toxicity."
The financial difficulties that stem from dealing with cancer can lead people to avoid or delay care or drugs, studies suggest, and also may cause stress that can lead to mental and physical health problems.
"When people are diagnosed, it behooves the provider to assess their financial risk at baseline — to find out if they’re at risk, and if they are, to be very aggressive with getting them to financial planning, to patient assistance programs to reduce their likelihood of having financial devastation," said Scott Ramsey, a health economist and physician at the Fred Hutchinson Cancer Research Center in Seattle who showed in 2013 that people with cancer are 2.65 times more likely to file for bankruptcy than people without cancer. "We think unless you do, it’ll be hard to keep people from ending up in this situation."
Why bankruptcy matters
For years, the evidence has accrued that cancer patients experience greater financial challenges than other groups of sick people. A study in the Journal of Clinical Oncology found that 13 percent of non-elderly patients with cancer spend at least a fifth of their income on treatment. Among people on Medicare, cancer patients spent an average of $4,727 of their own money on health care, according to a 2013 Cancer study — about $1,000 more than people without cancer.
What has been far less clear is whether the distress is simply a financial problem or also a health issue. No one would say financial stress is desirable, but does it affect how long or well cancer patients lived? Were people skipping doctor's visits, drugs or other treatments?
There's some evidence that higher co-pays deter patients from filling their prescriptions — one study found that a copay of about $50 a month or more was enough to keep nearly a fifth of patients from continuing to fill prescriptions for a remarkably effective rare leukemia treatment.
But cancer's burden isn't just high drug costs. Last month, Ramsey and colleagues reported that not only are cancer patients more likely to declare bankruptcy than those without; those who declared bankruptcy were 1.8 times as likely to die of any cause than cancer patients with the same diagnoses and initial treatments who did not.
Another study published in the journal Cancer last month examined Medicare data and found that among nearly 20 million cancer survivors, 29 percent reported financial burden of some kind, ranging from bankruptcy to borrowing money to not being able to pay for medical visits. Among those reporting financial burdens, 86 percent had health insurance during their cancer treatment.
"Another thing that concerns me with the way most insurance policies are set up is it seems they do a good job of protecting you at sort of middle-range expenses, but if you get to really high expenses, people incur a lot of out-of-pocket costs. The thing you want insurance to insure you against is financial catastrophe, but the way these policies are set up, for a lot of people, they don’t," said Norman Carroll, a professor of pharmacoeconomics and health outcomes at the Virginia Commonwealth University School of Pharmacy who led the Cancer study.
How financial toxicity hurts
The big question underlying this research is how financial distress hurts and what should be done about it. Are patients skipping appointments and not taking drugs that could extend their lives because they're going broke? Or are they losing their jobs or earning less after cancer and is worry about going broke having a snowball effect, bringing on other ill health effects?
There aren't definitive answers, but worrisome hints.
A 2013 study published in The Oncologist found that nearly half of cancer patients with insurance surveyed cut back on their spending on food and clothing or dipped into savings to pay for their treatment. The majority cut back on leisure activities. Three-quarters of them received financial assistance with their drug copayments.
A study of Medicare beneficiaries in the Journal of Managed Care Pharmacy found that for expensive cancer drugs that are given as pills, patients were more likely to stop or delay drug therapy as the portion they paid increased. For every $10 increase in out of patient costs per month, the likelihood of stopping or delaying use of the drug increased — 12.7 percent for a leukemia drug called imatinib.
Add to that Carroll's recent study, which found cancer patients who reported three or more financial problems had clinically meaningful differences in physical health. The study also tracked depression, and people with any kind of financial burden had meaningful differences in mental health — and as the number of financial problems increased, so did the mental health burden.
"Physicians probably should focus more on shared decision-making with patients to the extent that’s possible, and spend more time than I think has been spent in the past to see if you can find equally effective, lower cost treatment," Carroll said.
But researchers still don't know enough about the problem — or what the best therapy is. Ramsey said he is now working on a pilot where financial information will be collected at oncology clinics when people are seen, to see how treatments affect patients' financial health in real time.
"It’s easy for me to say that, but it’s hard to really do, because doctors don’t really want to deal with it, patients don’t want to," Ramsey said.