Discussing Financial Toxicity With Patients Who Have Cancer

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Jonas A. de Souza, MD

Let us consider financial toxicity as any other side effect and discuss its impact on patients’ quality of life. The timing to do so is now.

—Jonas A. de Souza, MD

Patient: “Doc, how much are these drugs going to cost me?”

Physician: “They are expensive, and you can see our financial counselor to help you understand the costs.”


Cancer care is not a black-and-white endeavor, and costs are considered a distasteful subject to be passed over in tactful silence. The surprise lesson from my oncology practice is that patients themselves often have become increasingly interested in knowing how the therapies we prescribe will affect their finances. As cancer drugs now routinely cost over $10,000 a month, these cost conversations between oncologists and their patients are becoming increasingly common.

The term “financial toxicity”1,2 has been used to describe the objective financial consequences of cancer, as well as the subjective financial concerns that come along with expensive health care. For example, according to the Family Reach Foundation Annual Report, 59% of their grants to help patients who have cancer with their expenses were for those in need of housing (mortgage and rent) support.3 In addition, more than an impact on our patients’ bank accounts, financial toxicity has been linked to differences in health-related quality of life,4-6 compliance,7 and, most recently, survival.8

Thinking Outside the Box

Given this crippling rise in the cost of cancer therapies, and the negative impact it is having on our patients, physicians need to be prepared to participate in discussions about costs. ASCO has made costs a priority research area through its Value in Cancer Care Task Force. Before that, in 2009, ASCO published a guidance statement urging oncologists to discuss the cost of care with their patients.9 ASCO argues that considering the factors of a patient’s welfare outside of a pure therapeutic approach is a tenant of ethical medical care.

The reality is that the pressures on a busy oncologist may not permit him or her to know all of the details associated with the costs of cancer care; costs may differ dramatically by insurance provider and plan, therapeutic modality chosen, and site of cancer care. As the ASCO report highlights, physicians are not trained on how to discuss costs with their patients and, as a result, generally feel uncomfortable with these discussions.

Therefore, to make strides in addressing financial toxicity and enacting real change, it is important for all of us to start to think outside the box. We propose two ideas to tackle the financial toxicity problem from the patient’s point of view.

First, we propose that instead of talking about the financial consequences in terms of out-of-pocket costs, we talk about the impact that costs of care (including loss of income and disability) will have on patients’ health-related quality of life. Oncologists are well versed in discussing the physical side effects of cancer and its therapies. Pain, alopecia, neuropathy, and vomiting are all documented in clinical trials, addressed in practice, and considered in therapeutic decisions for patients. Let us consider the impact of costs on a patient’s quality of life a side effect.

The instruments and methods to do so have already been developed.5,6,10 For instance, Zafar et al4 measured financial toxicity by “the difficulty with living on their income” and “whether their insurance changed.” We also developed a patient-reported outcome, the comprehensive score for financial toxicity (COST),10 to measure financial toxicity. Both studies showed that higher financial toxicity correlates with worse quality of life.6

Let us not make the cost discussions with patients all about the money and about something we were not trained to do. But rather, let us focus on how the financial consequences of these therapies may impact our patients’ health-related quality of life.

The second proposal is to let us learn and share data about financial toxicity. Document whenever your patient cannot take a medication because of costs. Document when a patient on treatment declares bankruptcy. Document when a patient reports changes in his/her daily life due to financial concerns. Just like any side effect, documentation of financial toxicity is the key to understanding it.

Last, let us share this knowledge among ourselves and with our patients. Let us develop mechanisms to share and increase our knowledge about this side effect. In this regard, our group has developed an online registry (, which has the potential not only to better understand the impact of financial toxicity on patients, but also to learn what yields to financial toxicity in different cancers and therapies. This registry is built upon a validated patient-reported outcome measure10 and aims to collect information on a patient’s condition, health-related quality of life, and treatment approach.

Our goal is to collect data to empower physicians to answer that question about how much a determined therapy would cost a patient with financial toxicity data. The day we will have enough data to say that ipilimumab (Yervoy) and nivolumab (Opdivo) cause grade 3 or 4 diarrhea in 9% of patients with melanoma,11 grade 3 or 4 fatigue in 4%, and a hypothetical grade 3 financial toxicity in 20% will soon come to reality.

Closing Thoughts

We should acknowledge that we are not trained for discussing costs with our patients, and, as physicians, we may never be. However, improving patients’ understanding of their financial toxicity is paramount to making informed decisions about their cancer treatment. Patients should be given the support mechanisms to address this side effect or, at the very least, should be notified about it. A valid alternative is to do what we do best: Let us consider financial toxicity as any other side effect and discuss its impact on patients’ quality of life. The timing to do so is now.  ■

Disclosure: Dr. de Souza reported no potential conflicts of interest.


1. Ratain MJ: Biomarkers and clinical care. Presented at the AAAS/FDLI Colloquium, Personalized Medicine in an Era of Health Care Reform, Washington, DC, October 27, 2009. Available at Accessed August 18, 2015.

2. Ubel PA, Abernethy AP, Zafar SY: Full disclosure—Out-of-pocket costs as side effects. N Engl J Med 369:1484-1486, 2013.

3. Family Reach: Financials. Available at Accessed August 18, 2015.

4. Zafar SY, McNeil RB, Thomas CM, et al: Population-based assessment of cancer survivors’ financial burden and quality of life: A prospective cohort study. J Oncol Pract 11:145-150, 2015.

5. Fenn KM, Evans SB, McCorkle R, et al: Impact of financial burden of cancer on survivors’ quality of life. J Oncol Pract 10:332-338, 2014.

6. De Souza JA, Wroblewski K, Yap BJ, et al: Grading financial toxicity based upon its impact on health-related quality of life. 2015 ASCO Annual Meeting. Abstract 6618. Presented May 29, 2015.

7. Neugut AI, Subar M, Wilde ET, et al: Association between prescription co-payment amount and compliance with adjuvant hormonal therapy in women with early-stage breast cancer. J Clin Oncol 29:2534-2542, 2011.

8. Bansal A, Ramsey SD, Fedorenko CR, et al: Financial insolvency as a risk factor for mortality among patients with cancer. 2015 ASCO Annual Meeting. Abstract 6509. Presented May 29, 2015.

9. Schnipper LE: ASCO Task Force on the Cost of Cancer Care. J Oncol Pract 5:218-219, 2009.

10. 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.

11. Larkin J, Chiarion-Sileni V, Gonzalez R, et al: Combined nivolumab and ipilimumab or monotherapy in untreated melanoma. N Engl J Med 373:23-34, 2015.


Dr. de Souza is Assistant Professor of Medicine at The University of Chicago and winner of the Costs of Care and ABIM Foundation Teaching Value and Choosing Wisely® Challenge.

Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO.