Introduction

Al B. Benson III, MD, FACP, FASCO

By Al B. Benson III, MD, FACP, FASCO
Feinberg School of Medicine, Robert H. Lurie Comprehensive Cancer Center, Northwestern University

Cancer care costs and value are terms intertwined in the lexicon of the oncology discussion that has become the focal point of cancer care delivery over the past few years. Increasingly, clinicians and advocates alike have rallied quite publicly to challenge the high price of oncologic therapeutics, particularly the new targeted agents, which threaten access to state-of-the-art interventions for our patients. Imaging and other diagnostics are formidable costs that are integral to the risk-versus-benefit dialogue with patients under treatment or surveillance, emphasizing the need for a broader scope of communication beyond drug costs. The global variability in costs of procedures such as colonoscopy—with the United States taking a significant lead in costs for similar procedures compared with other nations—has further fueled the debate over the cost of care.^1,2

A number of factors contribute to less-than-optimal treatment strategies, as recently highlighted in a Journal of the National Cancer Institute report that found a significant number of patients with metastatic colorectal cancer do not receive all active agents during the
course of their illness, and only about one-half of the patients were tested for the KRAS mutation—a standard-of-care approach in providing the continuum of care for metastatic colorectal cancer.³

In this issue of ASCO Connection, Dr. S. Yousuf Zafar addresses the complexities of the cost and value conversation between patient and clinician. He emphasizes that oncologists routinely discuss sensitive topics with their patients, such as end-of-life care, where
communication and informed decision-making go hand-in-hand. Simply acknowledging that the patient may be experiencing or is at risk for “financial toxicity,” as suggested by Dr. Zafar, and providing available resources for the individual, is an important first step.

Dr. Benson is a Professor of Medicine at Feinberg School of Medicine and Associate Director for Clinical Investigations at the Robert H. Lurie Comprehensive Cancer Center. He serves on the Editorial Boards of ASCO Connection and ASCO University®, and is Co-Chair of the ASCO Colorectal Cancer Surveillance Advisory Group.

References
1. International Federation of Health Plans. 2012 Comparative Price Report: Variation in Medical and Hospital Price by Country. obamacarefacts.com/2012-Comparative-Price-Report.pdf. Accessed March 17, 2014.
2. Haslam R, El-Khassawneh S, Sucher U. Gut. 2013;62 (suppl 2; A16). 3. Abrams TA, Meyer G, Schrag D, et al. J Natl Cancer Inst. 2014;106:djt371. PMID: 24511107.

How Should We Assess and Address the Financial Toxicity of Cancer Care?

S. Yousuf Zafar, MD, MHS

By S. Yousuf Zafar, MD, MHS
Duke Cancer Institute

I recently started treating a young patient with metastatic colorectal cancer. After considering a standard regimen of capecitabine/oxaliplatin/bevacizumab, I talked to him about what to expect—frequency of visits, side effects—the standard pre-chemotherapy talk we have all given countless times. He began treatment without complications. About a month into treatment, he mentioned during a routine follow-up visit that he was having trouble with the chemotherapy. I was surprised to hear this as, by all measures, he seemed to be tolerating the treatment well. He then mentioned that, despite insurance, the capecitabine was costing him over $300 per week out of pocket, and he could no longer afford it. I was shocked to hear he had amassed so much medical debt in such a short period because of the treatment I had prescribed, and because I had not thought to ask him one simple question: Do you have good prescription drug coverage?

As oncologists, we painstakingly translate clinical evidence for our patients. We inform them of odds, percentages, risks, and survival. When it comes to deciding on a treatment path, we lean heavily on the potential of physical toxicity, as we should, but are we missing the elephant in the room? Cancer treatment is among the most expensive forms of treatment, costing over $200 billion per year in just the United States. In this era of cost-sharing, when patients are taking on a greater burden of health care costs, we have to wonder how that mind-boggling number filters down into the daily lives of our patients. The evidence suggests that even patients with insurance are struggling to make ends meet; national estimates of out-of-pocket expenditures for patients with cancer fall in the range of $4,000 to $5,000 per year.¹ My young patient on capecitabine could not have afforded this amount of financial burden on his salary from his trucking company job, and a growing body of evidence suggests that many patients are like him. In order to defray medical expenses, patients with cancer are spending their savings, cutting back on food and clothing, and being non-adherent to medications, including chemotherapy.^2,3

While we spend a great deal of time considering how chemotherapy can be physically toxic, should we be spending as much time considering how it might be financially toxic? There are pros and cons to talking to patients about cost of care. Here are the most common arguments.

Little room for money in the doctor-patient relationship?

Most of us feel a little squeamish at the thought of discussing financial matters with our patients. Money is an inherently personal topic, and talking about money is often considered culturally taboo. But even those us who are more comfortable with talking costs do not have any formal training in how to broach the topic. To make matters worse, we have little—if any—details on how much any particular treatment will cost patients out of pocket. The lack of price transparency is the most common argument against talking to patients about cost. With numerous payers, countless plans, time-dependent variation in coverage, and well-hidden prices, we have little room to start the discussion. So, some argue, if we can’t be precise in the cost information we deliver, why bother at all? 

Additionally, in oncology we are faced with the problem of limited choice. Unlike our cardiologist colleagues who might opt for a less- expensive statin, we oncologists often do not have the luxury of choice. Rarely can we offer patients a menu of choices that vary in cost while delivering the best survival and tolerability outcomes. In this setting, financial toxicity joins the long list of physical toxicities that are mostly unavoidable when we have only a select list of treatment options to consider.

Finally, some have expressed a reasonable concern that discussing costs with patients might jeopardize the doctor-patient relationship. In recent years, oncologists have come under fire for potential conflicts of interest created by the ability to purchase and administer chemotherapeutics. Asking a patient about their ability to pay at the start of a visit might understandably raise some red flags on the part of patients. Indeed, our data suggest that some patients avoid broaching costs for fear of receiving lower-quality care.⁴

It’s time to talk to patients about cost

With these very reasonable concerns in mind, how can we advocate for discussing the cost of cancer care in clinic? We need to consider the mounting evidence that out-of-pocket expenses are harming patients’ well being and the quality of their care. In light of this evidence, we have no choice but to face the issue.

First, we have to address cost even with less-than-sufficient data for a truly informed discussion. Without price transparency, we cannot hope to provide patients with complete cost information. However, lack of price transparency should not prevent us altogether from helping our patients with their financial burden. In the case of my patient, asking him initially about his prescription drug coverage might have saved him thousands. Asking a pharmacist to assess patients’ insurance coverage before they fill expensive prescriptions is useful. While I might not be able to tell a patient exactly how much their oral chemotherapy will cost, I can turn to team members who can access that data.

Second, we must provide patients with the opportunity to consider alternatives and make trade-offs. Most patients realize that they will incur some costs as a result of their cancer treatment, and most patients are willing to bear some financial burden. However, not all patients have the same priorities. Admittedly, we have few true alternatives for patients in terms of anti-cancer drugs; one such alternative is fluorouracil for capecitabine, and I made use of this alternative with my patient. However, we must start thinking critically and creatively about the value in the treatments we provide. Compared to forging ahead with the next line of therapy, we may find it more difficult to inform a patient about the alternative of not receiving chemotherapy. But we might be doing them a much greater service in allowing them to consider a trade-off. Less challenging means to cost reduction include less frequent imaging, fewer tests, and less expensive supportive care drugs. ASCO’s Choosing Wisely® Top Five lists highlight some of these options (asco.org/topfive).

Finally, the sensitive nature of finances is often a barrier to cost discussions between patients and doctors. This combined with our less-than-complete education around how to talk costs can make for an uncomfortable conversation. In the outcome-oriented, data driven world of oncology, talking about costs without a solution in mind can seem counterintuitive. However, just acknowledging the patient’s struggle with costs can provide some relief in knowing that their doctors are aware of their situation. We can find an analogy in discussions about end-of-life care. While we cannot often “fix” what patients and their families experience near the end of life, we can validate their concerns and help where we can. As this topic comes up more frequently, oncologists should be aware of helpful resources, including pharmaceutical funds, foundation support, and nonprofit organizations such as the American Cancer Society and Cancer Support Community. ASCO provides information for patients on managing the cost of cancer care at Cancer.Net. These organizations have collected resources for patients with specific financial needs (e.g., copayment assistance, travel assistance), and patients are often unaware of these resources.

This is not the first time that oncologists have been asked to discuss a sensitive topic with patients. In reality, much of what we do revolves simply around communication and helping patients with decision-making. For instance, a recent article found that patients who receive chemotherapy within four months of death are more likely to receive intensive care and a delayed hospice referral. Yet, a majority of patients surveyed preferred receiving chemotherapy even if it extended their lives for one week.⁵ This study exemplifies the importance of communication in the practice of oncology. Be it palliative chemotherapy or cost of care, we do not always have all the answers or clear lines of evidence to inform our treatment decisions. What we know is that patients are at risk of suffering under considerable treatment-related financial burden. So let’s start talking. 

Dr. Zafar is an Associate Professor and gastrointestinal oncologist at Duke Cancer Institute and the Duke Clinical Research Institute. An ASCO member since 2005, he serves on ASCO’s Health Disparities Committee and Quality Care Symposium Planning Committee, among other activities, and is a columnist on ASCOconnection.org. Follow Dr. Zafar on Twitter @yzafar.

References
1. Bernard DS, Farr SL, Fang Z. J Clin Oncol. 2011;29:2821-6. PMID: 21632508. 
2. Zafar SY, Peppercorn JM, Schrag D, et al. Oncologist. 2013;18:381-90. PMID: 23442307.
3. Dusetzina SB, Winn AN, Abel GA, et al. J Clin Oncol. 2014;32:306-11. PMID: 24366936.
4. Zafar SY, Abernethy AP, Tulsky JA, et al. J Clin Oncol. 2013;31 (suppl; abstr 6506).
5. Wright AA, Zhang B, Keating NL, et al. BMJ. 2014;348:g1219.