Everyone is talking about health care costs these days. The presentations usually start with a chart of rising health care expenditures, the tip of the line pointing skywards. Next come exhaustive (and exhausting) tables, more charts, all punctuated with a final shrug of uncertainty from the speaker: What is the solution to rising costs? Of course, there is not just one.
But in the morass of data, we can lose the voices of the patient and her doctor. Even if we have not solved the health care cost crisis, there must be a something we can do today for patients suffering under this financial burden of out-of-pocket cancer care costs (sometimes called “financial toxicity“).
Patients may look to us, their oncologists, for the answer. As an oncologist, I have training in internal medicine, hematology/oncology, and even dedicated training in delivering bad news. So, I can, with some skill, inform my patient that her cancer is growing, but I have little to no skill in informing my patient about the thousands of dollars in out-of-pocket costs she will incur from treatment. In addition to the ins and outs of medical oncology and supportive care, are we also expected to gauge our patients’ financial situations? And where do we find the time in an often emotional visit to talk dollars and cents?
These questions are reasonable. Colleagues have told me that their patients want to spend precious appointment minutes talking about treatment plans, not bills. Patients have told me that it is not their doctor’s job to consider costs of care, or worse, they are embarrassed to bring up costs with their doctor. The rise in health care costs might be slowing, but families are paying more out-of-pocket. Yet, patients and doctors are ill-prepared to have the discussion. What we are left with, then, is a disconnect.
So, what do we do when patients tell us their health care bills are mounting? Or ask for less expensive prescription medications? Or ask for less frequent visits to save on travel money? These are all questions I have been asked in clinic, and I am sure many of you have been asked similar questions. I do not think it is reasonable to expect that we understand every patient’s insurance status or the cost of every intervention (especially with the current state of cost variation and lack of price transparency). The answer may lie in patient preparation.
Here is an example: As a gastrointestinal oncologist, I use a lot of oxaliplatin. I cannot do a lot to prevent the cold sensitivity and neuropathy that oxaliplatin causes, and those symptoms are experienced to some degree by almost all the patients I treat with the drug. But I, the nurses in clinic, our pharmacists, and the nurses in our treatment center spend a great deal of time educating patients on neurotoxicity. We tell them when to expect it, and we teach them how to lessen the sensation. Eventually, I might have to lower the drug dose or even discontinue the drug if the toxicity is too severe. I am fully capable of discussing a physical toxicity with my patients that I cannot necessarily prevent. Most of us who use this drug would not forgo this critical patient education just because we cannot avoid the toxicity. And most of us who use oxaliplatin would agree that the education is helpful in reducing our patient’s suffering. So how is this discussion around a physical toxicity different from a discussion around financial toxicity?
It should not be different. If the treatment we prescribe can result in undue financial burden, then we should address the financial burden before it results in patients spending savings or declaring bankruptcy. Even if we do not have all the answers for how to reduce treatment-related costs, having the discussion, acknowledging the problem, might ease patients’ concerns.
I listen to lots of talks and read lots of papers on the cost of care; my eyes glaze over at the charts and tables. But the intimidating figures should not prevent me from preparing patients for financial toxicity, for thinking of it as another side effect of treatment in an ever growing list.
Yousuf Zafar is a nationally recognized oncologist, health care executive, and population health researcher with more than 20 years of experience in cancer care, informatics, and value-based delivery. He is a practicing oncologist and adjunct professor at Duke University and chief medical officer at AccessHope, where he focuses on expanding access to expert cancer care knowledge for patients treated in the community. Dr. Zafar is helping to facilitate knowledge-sharing within the oncology community by partnering with National Cancer Institute-Designated Comprehensive Cancer Centers to remotely deliver the latest cancer knowledge to the people and places who need it most: bridging a critical gap for those who do not have access to specialized centers.
Previously, he was senior vice president of medical informatics at Optum and Change Healthcare and held leadership roles at Duke Cancer Institute, where he led development of an AI-driven cancer risk model that reduced readmissions by 50 percent and doubled appropriate hospice referrals.
Dr. Zafar has authored over 100 peer-reviewed publications, which are available on ResearchGate, and has led research funded by the National Institutes of Health and the American Cancer Society. His expertise spans clinical trials, real-world evidence, precision medicine, and health equity.
He is a fellow of the American Society of Clinical Oncology and serves on advisory boards including Health Evolution, the Personalized Medicine Coalition, and WCG IRB. In addition, he is a board member of Family Reach, a nonprofit helping families manage the financial burdens of cancer care. Dr. Zafar also shares professional insights and updates on LinkedIn and X @yzafar.