Financial Toxicity as an Unforeseen Side Effect of Inflammatory Bowel Disease

A 32-year-old male with a history of ulcerative colitis diagnosed at age 26 presented to our emergency department with an episode of bloody diarrhea, marked abdominal cramping, subjective fever, and nausea. Work-up, including the consideration of an infectious cause, revealed an acute ulcerative colitis flare, with severe proctocolitis visualized with flexible sigmoidoscopy. He had no other past medical history besides tobacco use, for which he was recently “cutting back.” Further history elicited that he had been experiencing acute flares 2-3 times per year since his diagnosis, which caused many missed days from his work as a waiter and loss of vacation time. At one point, he was let go from a job due to these missed days and subsequently went temporarily without insurance. He had planned to begin stepped up treatment with biologics at the time, but could no longer afford it. In total, he accumulated around $10,000 in debt for his medical expenses. By this current admission, he had secured a new job, for which he was to begin before this flare prevented him from doing so. He was given IV steroids and supportive care, and ultimately discharged with an oral steroid taper and scheduled infliximab infusions.

“Financial toxicity” refers to the idea of patients dealing with cost implications as a part of their disease experience. It was originally coined by S. Yousuf Zafar, MD, and Amy Abernethy, MD, from the Duke Cancer Institute in Durham, North Carolina, to describe an “adverse event” increasingly experienced by patients with cancer. There are two aspects of financial toxicity: objective financial burden and subjective financial distress. More is published on objective financial burden, with nonadherence as one of the best-studied outcomes resulting from higher costs. Subjective financial distress has been linked to changes in treatment-related decision making, with patients deciding for or against treatments based on primarily on cost. Like our patient in the vignette, these cancer patients are spending their savings, canceling vacations, and working more unintended hours to be able to afford their care.¹

Inflammatory bowel disease (IBD) is a heterogeneous group of chronic inflammatory disorders, including ulcerative colitis and Crohn’s disease, that affects nearly 2 million Americans². Treatment tends to be multi-faceted and disease course tends to be variable, with a large portion of IBD patients requiring costly hospitalization (24%-83%), surgery (39%-82%), or aggressive medical therapy (39%-82%). Furthermore, IBD is often diagnosed during the most economically productive years of adulthood such that nearly a third of costs stem from indirect sources, including lost productivity.³ The relatively nebulous nature of these indirect or “hidden” costs make them easier to overlook, and the downstream effects of these losses are difficult to calculate. For example, economic distress may lead to financial coping behaviors (e.g. skipping medications due to cost) and psychosocial distress may lead to increased psychosomatic complaints or behavior change, thus further increasing costs⁴. For these reasons, many patients amass a significant financial burden of care, with many costs still out-of-pocket.

While providers may ultimately have limited control over the cost of treatment, a component of their care should include monitoring the burden of these costs given the negative clinical outcomes that they impose on patients. Universal financial toxicity screening has been proposed for cancer patients as standard of care and may be beneficial for IBD patients as well⁵. This is especially true given the complex and chronic nature of IBD treatment. Identification of high-risk patients allows for triage to financial resources and individual case management that can improve IBD care delivery and prevent downstream effects⁵. For example, in our vignette, intensified management with biologics – which was initially deferred due to cost, ironically – may have prevented his acute flare. More specific, streamlined consideration of financial realities a priori could have prevented a paradoxical increase in cost in the form of another hospitalization and more lost time. While concern over cost is not novel, what is novel is the degree of attention focused on conversations and decision-making as a major locus of control⁶. Of course, patient and health care worker awareness is the first step toward addressing and decreasing the adverse effects of financial toxicity.