Most oncologists are resistant to addressing cost, but they can intervene earlier and more aggressively to let patients know about assistance programs and other avenues of relief.
—S. Yousuf Zafar, MD, MHS
It turns out that in addition to treatment-related toxicity, cancer patients commonly experience “financial toxicity,” a phrase that is increasingly coming into parlance in the cancer community. Patients should be assessed for financial toxicity as early as possible following diagnosis so that they can get help before they suffer its impact, according to a presentation at the 2014 Quality Care Symposium, held recently in Boston.1
Although financial toxicity is more common than one might expect, oncologists typically do not discuss cost of treatment with patients. Moreover, they are often unaware of the actual costs of treatments they prescribe. Discussion with patients about financial concerns represents a clear unmet need, but it is a matter of debate as to who should initiate these discussions and the optimal timing.
‘Elephant in the Room’
“Financial toxicity is the elephant in the room. You can ask your patients one simple question about whether their cancer care is covered by a drug plan to get the conversation started,” said S. Yousuf Zafar, MD, MHS, a medical oncologist at Duke University Medical Center, Durham, North Carolina.
In his presentation, Dr. Zafar sought to sensitize oncologists in the audience to the widespread problem of financial toxicity in cancer care. Many patients who are insured do not have adequate drug plan coverage and end up in bankruptcy. He gave an example from his practice of a patient who exhausted his savings to pay for his treatment, even though he had medical insurance and a drug plan.
“Even when we do choose wisely,” he said, “patients sometimes cannot afford their medications. The average amount for drugs that a cancer patient pays per year is $4,800,” he told listeners. And many patients pay much more than that.
“It would take at least 2 days to discuss why out-of-pocket costs are so high, but we can start with a well-known culprit—the cost of drugs themselves,” he said.
Drug costs are wildly out of hand, with the current average cost of 1 month of chemotherapy estimated at $10,000, he continued. In addition to the very high costs of biologics and oral chemotherapy, insurance premiums are higher than in the past, and patients are being asked to pay higher copays, he explained.
He cited the following examples of spiraling costs:
Four-tiered formularies are now in place in many drug plans. In 2013, one out of every four patients was enrolled in four-tiered formulary drug plans. Cancer drugs mainly fall in the two highest-price tiers.
“Together, these costs can result in financial toxicity for patients,” he stated.
Dr. Zafar and colleagues looked at a cohort of 254 insured cancer patients treated at an academic medical center.2 Approximately 75% applied for drug copayment assistance; 42% found their cancer treatment a significant or catastrophic burden; 46% stinted on food and clothing to pay for their medications, and 46% used their savings to defray costs. Adherence was compromised in 63%, and 24% avoided taking the drugs altogether.
A separate study showed that cancer patients had a 2.65 times higher risk of bankruptcy compared with the general population in the State of Washington.3
“There is mounting evidence that increasing out-of-pocket costs impact patient well-being,” Dr. Zafar stated.
Adherence to drug therapy is the first victim of financial toxicity. One study showed that higher copays led to a 42% increased likelihood of nonadherence to imatinib, he said.4 Another study showed that 45% of patients reported that they were nonadherent to save money.5
“Financial toxicity has an impact on quality care. There is a growing list of financial adverse events as a result of the care we are providing. They include delaying care, nonadherence, missed appointments, and taking fewer medications,” he continued.
“We know nonadherence affects outcomes. We haven’t been able to measure yet whether it affects survival. We need to address the elephant in the room. It is time to intervene,” Dr. Zafar said.
Levels of Intervention
He cited three levels of intervention: individual, interpersonal, and systemic.
At the individual level, patients should be given information about the cost of health care. “One of our goals should be greater health literacy related to costs of care. Our patients do not have high health cost literacy,” Dr. Zafar said.
He mentioned that one study showed that 60% of insured patients did not understand what a deductible is and noted that many patients do not understand the complexities of the Affordable Care Act.
“Forty percent of patients pay more than they expect to. Some patients are not aware of copayment assistance programs or are enrolled in inadequate insurance plans. We need to promote greater cost literacy,” he told listeners.
“On the interpersonal level, a study at our institution showed that about 50% of cancer patients wanted to talk to their oncologists about cost, but only 19% had that discussion.6 Barriers to communication include the perception that it is not the oncologist’s job to discuss cost. Of the 19% who did have the discussion with their doctor, 57% said that their out-of-pocket costs decreased as a result of the conversation. This is an exploratory finding that is hypothesis-generating, but 75% of the time, the costs were decreased without changing treatment,” he said.
“Most oncologists are resistant to addressing cost, but they can intervene earlier and more aggressively to let patients know about assistance programs and other avenues of relief,” Dr. Zafar said.
On a systemic level, high-risk patients should be identified before they accumulate debt. “Although this can be difficult at a large-volume center, we need to do a better job. We have some good screening tools, and we need to test them on a broader scale and begin to implement them. We also need to address price transparency, as there are data to suggest that greater price transparency can decrease cost,” he said.
“We need to corral our resources in health literacy, patient engagement, and health-care delivery to start intervening in this problem of financial toxicity,” he stated.
“We should consider financial toxicity a patient-reported outcome and assess this as we would other symptoms. If we did as good a job at this as on other side effects, we could improve outcomes,” Dr. Zafar stated.
During the question-and-answer session following Dr. Zafar’s talk, it became clear that there is no agreement about which health professional should address financial toxicity with a patient—an oncologist, a nurse, a nurse navigator, a social worker, or other clinician—and when these conversations should occur. Nevertheless, Dr. Zafar said that even if oncologists don’t initiate a discussion of drug coverage, they need to be aware of the costs of treatment.
Jane Perlmutter, PhD, founder and President of Gemini Group, Ann Arbor, Michigan, and a 30-year cancer survivor and patient advocate, shared her point of view: “The benefits of cancer drugs are generally overestimated and the harms are underestimated. I do think finances should be part of the discussions. It would be great if patients could get information on their insurance coverage for drugs and required copays in the context of harms and benefits of drug therapy.”
Jonas de Souza, MD, Assistant Professor at the University of Chicago Medicine, also believes that financial toxicity is critical to address with patients. He and his colleagues interviewed 155 cancer patients to develop a patient-reported outcome measure called COST (COmprehenstive Score for financial Toxicity)7 to evaluate financial toxicity in the clinical setting. To date, they have validated the tool in 50 cancer patients (of a planned 200), finding that COST can indeed measure financial toxicity and that a high degree of financial toxicity is associated with worse quality of life.8
Regarding Dr. Zafar’s presentation, Dr. de Souza said that it is important to assess financial toxicity, and several questions remain about the cost conversation with patients, including optimal timing and who should initiate the discussion. ■
Disclosure: Drs. Perlmutter, Zafar, and de Souza reported no potential conflicts of interest.
1. Zafar Y: The elephant in the room: How does financial toxicity impact cancer care delivery? Quality Care Symposium. Presented October 17, 2014.
2. Zafar SY, Peppercorn JM, Schrag D, et al: The financial toxicity of cancer treatment: A pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist 18:381-390, 2013.
3. Ramsey S, Bough D, Kirchoff A, et al: Washington state cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Affairs 6:1143-1152, 2013.
4. Dusetzina SB, Winn AN, Abel GA, et al: Cost sharing and adherence to tyrosine kinase inhibitors for patients with chronic myeloid leukemia. J Clin Oncol 32:306-311, 2013.
5. Zullig LL, Peppercorn JH, Schrag D, et al: Financial distress, use of cost-coping strategies, and adherence to prescription medication among patients with cancer. J Oncol Pract 9(6S):60s-63s, 2013.
6. Zafar Y, Abernethy AP, Tulsky JA, et al: Financial distress, communication, and cancer treatment decision making: Does cost matter? ASCO Annual Meeting. Abstract 6506. Presented June 3, 2013.
7. de Souza JA, Yap BJ, Hlubocky FJ, et al: The development of a financial toxicity patient reported outcome in cancer: The COST measure. Cancer 120:3245-3253, 2014.
8. de Souza JA, Yap BJ: Relationship between financial toxicity and health-related quality of life in patients with advanced solid tumors. 2014 ASCO Quality Care Symposium. Abstract 31. Presented October 17, 2014.