The Financial Costs of Chronic Myeloid Leukemia and Implications for Quality of Life and Adherence: Findings from the Cancer Experience Registry

Background: US prevalence of CML is estimated at 33,990 of January 1, 2011 (SEER, 2014). In 2014, about 5,980 new CML cases will be diagnosed (ACS, 2014). The era of tyrosine kinase inhibitors has transformed CML from an often fatal disease to one with an excellent prognosis, with ongoing treatment. Many people living with CML may have to manage a significant financial burden related to care, including medication copays and coinsurance, and other out of pocket costs. Several studies have reported that the financial burden of CML care is associated with decreased adherence (Dusetzina, 2014; Abraham, 2012; Noens, 2009). Poor adherence is associated with statistically significant decreases in 5-year event-free survival and may occur more frequently than either patients or physicians recognize (Oehler, 2013).

Methods: From October 2013 to June 2014, the Cancer Support Community (CSC) and The Leukemia & Lymphoma Society (LLS) registered 484 people living with CML to the Cancer Experience Registry: CML, an online initiative designed to learn and raise awareness about the psychosocial impact of CML. Registrants were recruited through an outreach program that leveraged CSC’s and LLS’s networks of community-based affiliates and chapters, online communities, CSC’s helpline and LLS’s information resource center, other advocacy organizations, social and other media channels. 393 registrants (81%) responded to a survey, including questions about the financial cost of CML and cancer-related distress. Stress-related intrusive ideation about managing the financial impact of CML was measured using the Impact of Event Scale (IES, 7 items, Horowitz, 1979); levels >13 were used to indicate clinically significant symptoms associated with anxiety. Fifteen items from a validated distress screener (α=0.93) (CancerSupportSource, Miller 2014) were summed to create a score for overall distress (mean=23, SD=14, range 0-60), and 4 items were summed for a depression score (α=0.88) with a binary variable created to indicate at risk for depression (score≥5). For these analyses, we excluded survey participants living outside the US (n=54) and bone marrow transplant patients not taking oral CML medications (n=11). The sample (n=327) was 68% female, 98% Caucasian, median age 59. Median time since CML diagnosis was 4 years. Total annual income: 32% <$40K; 30% $40-79K; 37% at least $80K.

Results: Nearly half (48%) reported spending at least $100 per month on all out of pocket costs related to CML; 27% spent $250 or more; 15% spent $500 or more; 5% spent $1,000 or more. Greater out of pocket costs were associated with higher overall distress (p<0.001) and increased risk of depression (p<0.001), adjusting for income. One-third (34%) reported that CML-related out of pocket costs affect their household “quite a bit” or “very much”; 21% responded “a little bit”; 27% responded “not at all.” More than one-third (37%) reported currently experiencing clinically high levels of intrusive ideation (IES>13) about the financial cost of care. Oral CML medicine was the greatest cost burden to participants. Because of the medical costs of CML, 33% reported depleting their savings; 20% borrowed against or used money from retirement; and 35% reported cutting their grocery expenses. Nine percent enrolled in a clinical trial that paid for most of their treatment expenses. About one-third used pharmaceutical assistance programs (30%) and co-pay assistance programs (38%). In order to reduce health care costs, 10% reported skipping dosages of medicine at least sometimes, and 14% postponed filling prescriptions. Twelve percent reported they postponed seeking psychological counseling or support. Half (51%) of participants did not know if they were eligible for Social Security Disability Insurance or Supplemental Security Income; 44% wished they had received more help with financial advice and assistance.

Conclusion: CML places a financial burden on patients that is associated with patients taking measures that may significantly impact quality of life and may negatively affect treatment outcomes. Implications for future research and practice include the development and evaluation of interventions to enhance oncology team-patient communication and support (e.g., financial counseling and assistance) to help ensure that the financial burden of CML does not negatively impact the patient’s quality of life, course of cancer care, and health outcomes.