September 10, 2019
4 min read

The unspoken truth about financial toxicity

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As time goes by, I realize my clinical comfort zone is shrinking.

John Sweetenham, MD, FRCP, FACP
John Sweetenham

For me, this has been a stepwise process, driven by several factors — a disease focus on lymphoid malignancies, withdrawal from general oncology call, increasing administrative commitments encroaching on clinical time, rapid advances in knowledge and complexity of therapy ... the list goes on.

This phenomenon is probably more characteristic of those of us in academic centers than oncologists in community practice, but I suspect most of us experience it at some level.

Discomfort with financial talks

Of the many patient care challenges that have come to occupy my “discomfort zone,” one or two seem to be permanent residents — specifically those related to my patients’ finances, insurance coverage and related issues such as short- and long-term disability.

My understanding of these issues and how they impact the day-to-day lives of our patients is, to say the least, foggy, and when asked directly about these subjects in clinic, I frequently feel out of my depth. I have a very low threshold for bringing in others with the appropriate expertise to help — typically social workers, financial counselors or pharmacists.

I have assumed that my failure to understand these issues and to be able to give my patients sound advice is related to being a relative latecomer to U.S. health care. Twenty years in oncology in the U.K. National Health Service — a socialized, single-payer system — is not good preparation for working through the complexities of coverage in the United States.

I’ve tried hard to move up the learning curve over the past 20 years, but have a large knowledge gap, which makes me reluctant to offer advice without input from those who really understand these issues. That’s why my financial discussions with patients typically are brief and finish with referral to someone else on the team. I try to be responsive to their needs but often feel I don’t have much practical advice to offer.

It turns out, I’m not alone.

Financial toxicity and the rising costs of cancer care have been the subject of intense coverage in peer-reviewed literature, at major academic meetings and more broadly in media outlets, including social media, for several years.

Attempts to address the problem have included the American Board of Internal Medicine’s Choosing Wisely campaign, as well as value frameworks proposed by organizations such as ASCO and the National Comprehensive Cancer Network’s Evidence Blocks. Additionally, there are continued discussions of legislation to control the cost of drugs, as well as efforts to control costs through alternative payment models, such as CMS’s Oncology Care Model.


These efforts are all positive steps, and support from our professional organizations has been consistent. Many of us feel strongly that financial toxicity of cancer care needs to be addressed urgently.

Despite that, when we get down to one-on-one interactions with patients, many of us simply don’t talk about their financial challenges in a meaningful way.

Unspoken concerns

That our cost conversations with patients typically are shallow is reflected in the general conclusions of a study published in June in Journal of Oncology Practice, which explored conversations about financial issues at two academic oncology centers and a partner safety net hospital.

The study included 529 adults with solid tumors. The investigators recorded clinic encounters in this group that were subsequently analyzed to determine whether any discussion of costs or other financial concerns took place.

Just under 30% of the encounters included some discussion of costs, but the mean duration of the discussion was less than 2 minutes — very similar to a previous study among patients with breast cancer that reported a typical duration of 1 minute.

Patients initiated discussions of costs in 70% of encounters. The authors list various themes to these discussions, including drug costs, insurance coverage, employment concerns and costs of specific tests, such as imaging.

The analysis shows that when financial issues were raised, they were verbally acknowledged by the provider only 60% of the time, prompted a specific action only 25% of the time and resulted in a social work referral in only 3% of encounters. Physicians were more likely to discuss costs when they had a potential impact on management strategy, such as treatment on a clinical trial, or the use of specific staging modalities, but, otherwise, direct action was the exception rather than the rule.

The authors cited several possible reasons for the lack of attention to these patient concerns, acknowledging that lack of time and training are probably major contributors. Although that’s undoubtedly true, it doesn’t explain the apparently low rate of referral to other professionals, such as social workers.

These data highlight a paradox — that we “talk the talk” of dismay and concern about financial toxicity but seem unable to “walk the walk” of taking action at the level of individual patient care.

I can certainly relate to the findings of this study and think it’s likely that lack of knowledge and training is the main reason we often fail to engage and act on our patients’ financial struggles. Many of us are fortunate to have access to experts who can assist, but referral often is not very systematic and occurs very late in the patient’s care, when it can be more difficult to define how best to help and too late to obtain the best assistance for the patient.


Many centers are redesigning their intake process to include early intervention by a financial advocate or financial navigator. There is evidence to suggest that trained financial navigators can reduce out-of-pocket costs for patients with cancer, often by helping them to enroll in insurance plans of different types, including Medicare and Medicaid. These navigation programs have been shown to save patients thousands of dollars in medication costs, premiums and co-pays.

As in so many aspects of cancer care, early intervention seems to be the key to greater success. We should all be looking carefully at models for intervention and best practices in this area to reduce the stress and financial burden of our patients in a proactive fashion.

As oncologists, we care deeply about our patients and about the rising costs of their care, but in our encounters with them, these concerns go largely unspoken, because many of us don’t feel equipped to address them. The ultimate solution to this problem is complex and will include multiple strategies to reduce costs of cancer treatment.

In the meantime, there is evidence that we can reduce the burden on our patients through appropriately timed interventions.


Warsame R, et al. J Oncol Pract. 2019;doi:10.1200/JOP.18.00618.

Yezefski T, et al. Am J Manag Care. 2018;24(5 suppl):S74-S79.

For more information:

John Sweetenham, MD, FRCP, FACP, is HemOnc Today’s Chief Medical Editor for Hematology. He also is associate director for clinical affairs at Harold C. Simmons Comprehensive Cancer Center at UT Southwestern Medical Center. He can be reached at

Disclosure: Sweetenham reports no relevant financial disclosures.