Patients coping with cancer face numerous challenges, from the emotional reaction to a diagnosis, to lasting, difficult treatment regimens, to having to face their own mortality. As the costs of health care continue to rise, they are also facing an additional challenge—finding a way to pay for their cancer treatment.
For the past five years, Yousuf Zafar, MD, has been studying what he calls financial toxicity. “Financial toxicity is the idea that patients receiving cancer treatment are not just at risk for physical harm but also financial harm--even for patients with insurance,” Zafar said.
Even for patients who make a full recovery, the financial costs of cancer care can be devastating. “Patients are spending their retirement savings, cutting back on food and groceries, not taking their medicine, and even going bankrupt--and all this despite having insurance,” Zafar said.
Zafar believes that the first step in addressing this problem lies in improving health-cost literacy, or patients’ abilities to obtain, understand, and make use of information about the costs of cancer care. Zafar, along with a team of other faculty members within the DCI, wrote about cost-related health literacy in a recent issue of the Journal of Oncology Practice.
This article highlights the difficulties Americans have in understanding the costs of cancer care. One of Zafar’s studies found that while 52 percent of cancer patients wanted to talk about costs with their doctor, only 19 percent of them actually had that discussion. In another study, only one in six participants could calculate how much they would pay for laboratory testing in an out-of-network facility through an insurance plan.
Zafar believes that improved communication about the costs of care, especially before treatment begins, can help to narrow these gaps. Just as treatments differ in their side effects, length of treatment, chance of success and other factors, the cost often varies among groups. The cost for a newer drug, for example, may cost thousands of dollars more than established treatments, even if the end results are almost identical. In other cases, a health insurance plan may offer better coverage for one treatment than for another, even if both treatments produce similar results.
By working together, physicians and patients can often come up with treatment plans that meet their financial and medical needs. Zafar’s study found that more than half of patients who did discuss cancer costs were able to reduce the costs of care, usually without affecting the quality of their treatment.
While physicians and patients sometimes hold back from discussing health care costs, Zafar encourages both of these groups to speak up.
“Many of us [physicians] have considered it taboo to talk about money with patients. But I think that needs to change because we see how costs can really affect patients,” Zafar said.
“The earlier we address cancer costs, the easier they are to resolve,” Zafar said. “It’s much easier to prevent medical debt than it is to dig a person out of that debt. If a person runs into financial difficulty, we often find out there’s a problem after it’s too late.”
Zafar also encourages patients to bring up the costs of cancer care with their clinicians. “Don't be embarrassed to talk about costs with your health care team. We want to protect you from treatment harm, both physical and financial,” Zafar said.
For patients most in need, DCI’s Office of Health Equity and Disparities (OHED) helps to find ways to reduce the financial burden of cancer treatment. “We aim to address the financial needs of our patients from the very beginning, so if there is a problem down the road they don’t end up with exorbitant costs,” said Nadine Barrett, PhD, director of the OHED. “If one of the patients we work with is diagnosed we have multiple options to help defray their costs.”
The OHED helps enroll low-income patients in the North Carolina Breast and Cervical Control Program, where they can receive free screenings to detect breast and cervical cancer, helping to find these cancers when they can be more safely and inexpensively treated. If cancer is detected, patients enrolled in this program are eligible for Medicaid.
The OHED also connects low-income patients with other programs, such as Local Access to Coordinated Healthcare (LATCH), a program of the Duke Division of Community Health, that provides services to uninsured and under-insured Durham County residents. Another local resource is the Caring House, a non-profit organization that provides affordable housing for patients receiving treatment at the Duke Cancer Institute.
“The costs of cancer can be high, but there are some options to assist people particularly if we are proactive in understanding the patient’s financial status and need,” Barrett said. “There are resources and our goal is to navigate and link our community and our patients to the services and support they need.”