A four-year review of the financial burden of cancer care: Results from a national education program

The financial realities posed by costs associated with cancer care often greatly complicate a cancer diagnosis. According to a 2010 NIH study, direct cancer care expenditures are expected to reach $158 billion in the U.S. by 2020, significantly impacting millions of Americans. Medical debt is also a significant cause of personal bankruptcy in the U.S., even if insured. To help address this rapidly growing issue, the Cancer Support Community developed Frankly Speaking About Cancer: Coping with the Cost of Care in 2009. This evidence-based program combines free professionally led workshops, educational booklet, and online content to help those affected by a cancer diagnosis. Since 2009, the Cancer Support Community has surveyed Frankly Speaking About Cancer: Coping with the Cost of Care workshop attendees nationwide to continue to explore the impact of the cost of cancer care. All workshop attendees were eligible to complete the survey. To date, 964 attendees (64.6% response rate) have reported their experiences. The survey includes items on an individual's experience with the cost of cancer care as well as relevant medical and demographic information. The majority of respondents (63.9%) were people with cancer/survivors, with the remainder being spouses, family, and friends involved with their care. Nearly all (91.1%) had health insurance at diagnosis, though 33.8% reported a change in insurance status since diagnosis. Most (79.2%) were Caucasian, and the average age was 57.0 years. The majority of respondents (58.8%) reported experiencing a significant degree of emotional distress due to cost of care. Respondents indicated a variety of unforeseen expenses, including deductibles (43.2%), co-pays for both pharmaceuticals (39.0%) and office visits (35.9%), treatment-related parking and/or transportation (36.4%), and emotional support (19.1%). Nearly one-third (31.8%) had applied for disability insurance to help with expenses, including employer-related disability (21.1%), social security disability (36.0%), and private disability (2.3%). Most (68.5%) reported their highest prescription co-pay in a month was over $100; and 14.1% paid over $500 in a month. In spite of these expenses and the sense of financial burden, most (82.8%) had not applied for co-pay assistance. Given the national context, these data further highlight the financial burdens and emotional distress experienced by individuals coping with the costs of cancer care for patients and caregivers. Findings suggest the need for continued education on navigating all aspects of the cost of cancer care, including increasing awareness of relevant financial support options.