Financial toxicity among patients with multiple myeloma receiving co-pay assistance.

23 Background: Though recent years have seen proliferation of new high cost therapies for patients with multiple myeloma (MM), little is known about the financial burdens experienced by patients and the role of co-pay assistance (CPA) in access to therapy. Methods: We conducted an anonymous national online survey of patients with MM who were receiving CPA grants from a charitable foundation (HealthWell). The primary outcome of interest was financial toxicity as measured by the COST tool. Patient characteristics were compared across three COST groups based on cutoffs identified in prior literature and associations were evaluated using Chi-Square and Fisher’s Exact tests. Results: Among 589 respondents, the mean age was 72 years (range: 49 - 92), 47% were female, 85% White, 8% Black, 4% Hispanic, 58% had Medicare, and 39% Medicare Advantage. Overall, 63% reported annual household income < $60,000. 17% reported a delay in starting therapy due to cost (41% of whom reported > 2-week delay). For 44% of patients, the drug supported by CPA was part of first line therapy. Following initiation of therapy supported by CPA, the percent of patients reporting poor health decreased from 25% at baseline to 6% following initiation of CPA supported therapy (p < 0.001). 22% of patients felt that failure to obtain CPA would mean going without any therapy and 86% felt worried about what would happen to them without CPA. 66% reported they had expected health insurance to shield them from high costs, yet 91% reported that out-of-pocket costs were higher than expected. 58% wanted their doctor to discuss costs with them, but only 27% reported that this had occurred. Based on the COST tool, 25% reported ongoing moderate/severe financial distress, 54% mild, and 21% minimal/none. Financial toxicity was associated with younger age, spending > 10% of income on healthcare, annual income < $60,000, and greater emotional distress by PHQ4 (all p < 0.001). Conclusions: Patients with MM face high unexpected out-of-pocket costs and financial barriers to care, with our findings highlighting financial distress despite the receipt of CPA. There is a need for clinician attention to the out-of-pocket costs experienced by patients with MM, public awareness of the limits of Medicare coverage, and novel policy solutions to ensure access to care.