Money Madness: The Emotional Burden of Paying for Cancer

She was insured, thanks to a health policy taken out by her self-employed husband, who ran a small auto detailing business near Knoxville, Tenn. But the up-front deductible, before coverage kicked in, was $6,000. So Moody, who received her diagnosis in 2009 at age 61, worked the phones, hammering out payment plans and cobbling together a few thousand dollars before treatment could begin.

“It was very stressful, very tiring,” she says. “And my husband really couldn’t help me with it much. He had to work to pay for this. So it was all on me.”

At the same time that the costs of cancer drugs and other scientific advances continue to escalate, insurance policies are changing, leaving more patients, such as Moody, to foot larger chunks of the bill through deductibles or co-insurance. Increasingly, cancer physicians are discussing the risks that such financial stress can inflict on patients. A related term has recently emerged: financial toxicity.

Just as cancer drugs can exert toxic side effects, so can payment worries, says Yousuf Zafar, an assistant professor in the division of medical oncology at Duke Cancer Institute in Durham, N.C.

“What we are learning more and more is that the cost of treatment, even among insured patients, can cause financial toxicity,” says Zafar, who authored several publications earlier this year with Duke physician Amy Abernethy, highlighting the problem. “As a result of the costs from care, patients’ well-being can be impacted, and the quality of their care can be impacted, as well.”

One recent study, which looked at data from 284 Washington state patients with stage 3 colon cancer, found that 38 percent reported at least one significant treatment-related financial hardship. Among the treatment-related impacts cited: selling or refinancing their home, accumulating debt, borrowing money from loved ones or experiencing at least a 20 percent drop in income. Nearly all of the patients involved, 96 percent, were insured, points out Veena Shankaran, who helped author the study, published 2012 in the Journal of Clinical Oncology. “I have to say, it was surprising to see that degree of major financial hardship in this group,” says Shankaran, an assistant professor in the department of medicine’s oncology division at the University of Washington in Seattle.

Moreover, the financial ripple effects can linger long after treatment ends. The 2012 study found that, of the 23 percent of patients with medical debt, the average accrued debt for cancer care was $26,860. The vast majority of patients reporting debt—81 percent—were still carrying some of it more than a year after diagnosis.

What we are learning more and more is that the cost of treatment, even among insured patients, can cause financial toxicity.

Before Linda Moody could get surgery and radiation treatment for her stage 1 breast cancer, she became a master negotiator, dickering with doctors and hospital officials and nonprofit foundations.

Most patients, though, are reluctant to ask their doctors for help, according to findings that Zafar presented in June at the annual meeting of the American Society of Clinical Oncology (ASCO). The study, which surveyed 300 insured patients treated at Duke and affiliated clinics, found that 52 percent of them wanted to discuss treatment costs with their physician. But just 19 percent actually had done so. “Patients have this misconception that either they shouldn’t talk to their doctor about costs or that their doctor won’t be able to help them,” Zafar says.

Why? His survey identified some possible explanations: 28 percent said they wanted the best care regardless of price; 18 percent didn’t think their doctor could help; and 9 percent were embarrassed to raise the cost issue.

Financial strain cannot only erode patients’ wellbeing, but also their ability to fight the cancer, according to an earlier pilot study that Zafar also helped author, published in 2013 in The Oncologist. Zafar and his fellow researchers found that 46 percent of 254 patients surveyed cut back on food and clothing to afford treatment. Also to save money, 20 percent of patients took less than the prescribed amount of medication; 24 percent admitted to not filling some prescriptions.

Someone on the cancer treatment team, whether it’s a doctor or another clinician, needs to talk about money more directly, Shankaran says. “We can’t rely on our patients to report this side effect,” she says.

If money is a factor, it should be considered, particularly when there are two similarly effective approaches, Shankaran says. “We, right now, make recommendations about treatment in the absence of any consideration about cost.”

Moody describes a social worker’s assistance as crucial when she hit another financial roadblock after wrapping up surgery and radiation. Since her tumor was hormone-receptor positive, her doctor prescribed Arimidex (anastrozole), saying that she’d have to take it indefinitely to guard against cancer recurrence. Insurance didn’t cover any of the cost, which Moody recalls as $400-plus a month.

The social worker provided a list of nonprofit organizations to contact and Moody started phoning again. The nonprofit HealthWell Foundation was the third group she reached. The Gaithersburg, Md.-based organization paid for her medication until Moody became eligible for Medicare coverage.

Financial stress is so encompassing in terms of it touching so many aspects of one’s life.

Patients worried about affording care should raise their concern early in their treatment, Shankaran recommends. One approach: Ask the doctor if someone on the clinical team can walk them through what bills they should anticipate, as well as any financial resources that are available. “I think something as simple as that— it starts a conversation,” she says.

Zafar’s recent survey identified a ray of hope: 57 percent of patients who did discuss costs said the conversation led to a decrease in expenses.

Simply fretting at home is not a productive strategy, from either a practical or a mental health standpoint, says Barbara Andersen, a psychology professor at The Ohio State University in Columbus, who has studied stress and quality of life in people with cancer. One of her studies, published in 2004 in the journal Psycho-Oncology, found that women with breast cancer were more likely to develop depressive symptoms if they experienced other non-cancer stresses, with financial difficulties leading that list.

“Financial stress is so encompassing in terms of it touching so many aspects of one’s life,” she says. Another difficulty is the sense of a loss of control. More than likely, a patient coping with chemotherapy and other treatments can’t magically generate a windfall of income, particularly if they’ve stopped working for a stretch.

But patients can regain some sense of control, and hopefully generate solutions, through a proactive problem-solving approach, Andersen says.

She recommends that patients first define their most pressing financial worry, whether it’s maxed-out credit cards or the possibility of losing their home, she says. Then, assess its impact, emotionally and physically. Finally, it’s time to start brainstorming, says Andersen, who recommends outlining thoughts and ideas in writing. Think of potential solutions, not just a couple, but 10 or more. “The more ideas, the more solutions a person can generate, the more likely it is that they’ll be able to find one or two or three to begin with,” she says.

Select the most promising idea and begin to break it down into executable parts. Keep writing, listing pros and cons, Andersen says. Ideally along the way, the overwhelming burden of financial worry gets broken down into more tangible and manageable components. “Stressors are more stressful if we think we cannot manage them,” she says.

Moody is still cancer-free and taking the hormone drug, which is now covered by Medicare. Only now does she admit that she stretched the medication early on, sometimes taking it every other day, when she was struggling to pay for it herself. Then one day her oncologist called her out, at least indirectly.

“I guess the doctor suspected, I don’t know—he threatened my life,” she says, laughing. “He said, ‘Some people, financially, they may kind of skip a dose. You wouldn’t do that now, would you?’”