Maine Cancer Foundation (MCF) was interested in understanding more about the concept of financial toxicity in Maine as it relates to a cancer diagnosis, treatment, and recovery. Research has shown that the cost of treatment impacts the care decisions and outcomes of cancer patients. The concept of financial toxicity extends beyond that to understand how cancer impacts all aspects of a patient’s and caregiver’s financial well-being. This includes not only the cost of healthcare and treatment, but things like lost employment and wages, transportation, food insecurity, mortgage defaults, medical bankruptcy, and even decisions that patients make about where and what type of care to receive.

The purpose of this research and assessment was to help MCF understand the nature of financial toxicity in Maine, the impact of cancer on the finances and decisions of patients and caregivers, and the options to help address this issue in the state. The goal was to provide MCF with a clear understanding of the problem, barriers, and solutions so the organization can better help address financial toxicity in Maine and improve the financial well-being of those who have been diagnosed with cancer and their families.

To accomplish this, MDR conducted a survey of 191 Maine cancer patients and caregivers about their experiences with cancer and cancer care, including the financial issues and barriers they faced, the supports they received, and the impact cancer had on their financial and emotional health and well-being.

Results found that nearly all survey participants experienced some level of financial toxicity due to their cancer diagnosis and treatment. Issues such as forgoing or delaying care, mental health problems, loss of employment and income, debt and bankruptcy, and long-term reductions in quality of life were common outcomes experienced by cancer patients and their families.

In addition, those who lost their job, had to retire, or were unable to work because of their cancer diagnosis and those who lacked health insurance were significantly more likely to experience the effects of financial toxicity, including delaying or skipping treatment due to cost, having difficulty paying regular bills, having to borrow money or spend their savings, or defaulting on a loan or declaring bankruptcy because of their cancer.

Financial toxicity can be one of the biggest impediments to acceptance and recovery from cancer, especially for those who lose their jobs, can’t work, or who lack adequate health insurance.

Recommendations to Address Financial Toxicity in Maine:

• Improve cancer patients’ ability and willingness to discuss costs of treatment and care with their care team
• Improve the ability and willingness of cancer care providers to engage with patients about costs of treatment and care
• Consider value when discussing treatment options and administering treatment with patients
• Focus on personal and social needs, which are often neglected due to financial toxicity, and provide needed support
• Address mental health issues, which is as important as providing financial assistance
• Reduce the cost of care or shift burden of payment away from patients
• Provide patients with affordable prescription medication options
• Provide access to sick leave and other options; employers have a role to help support employees who are diagnosed with cancer
• Develop a Maine task force focused on addressing the issue of financial toxicity in the state

Results of the study were presented at the Maine Public Health Association’s 37th Fall Conference in 2021: Dirigo: Rebuilding and Moving Forward Together.