Cancer treatment can take a huge physical toll on patients since eradicating cancer cells so often requires that patients be exposed to the toxic effects of radiation and chemotherapy. But cancer treatment is often financially toxic as well. The financial toll cancer treatment takes — some patients spend as much as a third of their household income on cancer care, even if they have health insurance — is less well known, but no less devastating; and its effects may last even after the cancer patient has recovered.

This “financial toxicity” can negatively affect the mental and physical well-being of many cancer patients, especially if they discontinue treatment because they feel they can’t afford it, according to Yousuf Zafar, senior author of a recent study published in JAMA Oncology.

Patients with the greatest financial stress spent about 31 percent of their household income on health-related costs, not including insurance premiums.

More than one-third of the insured cancer patients in the study receiving anticancer therapy faced out-of-pocket costs that were greater than expected, researchers at Duke Cancer Institute in North Carolina found. The expense of cancer treatment, such as co-pays and deductibles, can cause financial stress for patients at all income levels and at all stages of cancer.

Blindsided by Unexpected Costs

The researchers surveyed 300 patients diagnosed with cancer who had insurance. Participants were asked if their actual costs met expectations, and how much they were willing to pay out-of-pocket for cancer treatment, not including insurance premiums.

High or overwhelming financial stress was reported by 16 percent of participants. Patients with the worst financial stress spent about 31 percent of their household income on health-related costs, not including insurance premiums. About 60 percent of those with high levels of financial stress had private insurance.

Even among those who thought they had adequate health coverage, a cancer diagnosis meant they were underinsured.

Those who reported little or no financial stress spent about 10 percent of their household income on medical expenses. Of those who had little or no financial stress, more than half had private insurance and 39 percent had government-subsidized insurance.

“Learning about the cost-sharing burden on some insured patients is important, given the uncertainty in health insurance,” Fumiko Chino, lead author on the study, told TheDoctor. Study participants spent an average of 11 percent of their household income on out-of-pocket medical costs, and patients who spend more than 10 percent are considered underinsured. So even among those who thought they had adequate health coverage, a cancer diagnosis meant they were underinsured.

Why Patients Don't Ask about the Cost of Cancer Treatment

An honest provider-patient dialog is necessary, but patients may not ask their providers about lowering medical costs for several reasons, said Chino, a resident in radiation oncology at Duke Health.

The cost of treatment is not a first priority for patients just beginning to grapple with a cancer diagnosis.

In addition to being concerned about their health, cancer patients may worry that discussing cost with their doctor will compromise the quality of their care. They may also believe it is not the provider’s job to reduce medical costs or that he or she may not be able to reduce costs.

Doctors can and need to do something about this, said Zafar, a medical oncologist at Duke. “This study adds to growing evidence that we need to intervene. We need to create tools for patients at risk of financial toxicity, and connect them to resources so they can afford their care,” he said. Providers may need to start the conversation. “Providers need to be emboldened to ask if patients can afford treatment,” says Chino. Otherwise, patients cut corners by not taking medications as prescribed or not filling prescriptions because they couldn't afford it.

Patients facing unexpected cancer treatment costs tend to be less willing to pay for care, even when adjusting for financial burden, and more research is needed to increase patients' healthcare cost literacy, the authors explain. The goal is to make patients more knowledgeable about healthcare costs and in so doing improve cost-conscious decision-making. Some patients may be able to talk to a financial planner or social worker about paying for treatment. In some cases pharmaceutical companies have prescription assistance programs available.