The Impact of Financial Toxicity on Patients With Cancer and Families
By Richard Dickens, MS, LCSW-R
"If you are diagnosed with cancer, which expert should you see first? 1. A medical specialist. 2. A money manager. Surprisingly, option two might give the best hope for surviving the disease with your health—and your wealth—intact." So begins a 2018 analysis published by AARP, which goes on to indicate that "11 of the 12 cancer drugs that the FDA approved in 2012 were priced at more than $100,000 per year."
Financial toxicity (FT) is a term coined in 2013 (Chi, 2017). According to the National Cancer Institute, "the term FT is used to describe how out-of-pocket costs can cause financial problems for a patient. Out-of-pocket costs are what you pay for your medical care that is not covered by your health insurance. … Cancer is one of the most expensive medical conditions to treat in the United States. Patients with cancer who have health insurance are paying higher premiums than in the past. They are also paying more for copayments, deductibles, and coinsurance."
The Many Financial Tentacles of Cancer Care
Even with the most comprehensive health insurance plan, the day-to-day costs of living with cancer aren't covered. Transportation, child care, rent/mortgage, and food become a greater burden when the patient or caregiver has to take time off from work or can no longer work at all, especially if there is little to no safety net to carry them through.
At CancerCare, the number one concern of callers to the Hopeline is financial hardship. An all-too-frequent scenario is the one presented by Mabel. She worked her whole life earning minimum wage. As a 75-year-old widow, she decided to stay in the rural Alabama town when her two adult children moved away. Prior to her cancer diagnosis, she got by on $1,000 a month: $300 in Social Security and $700 from a widow pension. When her treatment began, the copays mounted and she began cutting back on food. When she was told she needed seven weeks of radiation, she cut back on treatment, not wanting to burden her children and embarrassed to tell the doctor she could not afford daily transportation.
Expenses related to a cancer diagnosis can have an especially hard impact on patients aged 25 to 54, who face multiple responsibilities, often including child care or elder care. In addition, this population often has limited insurance options or access to government support programs.
In a 2016 CancerCare study of cancer patients across the country, one-third of respondents in this age bracket cut back on essentials such as groceries and transportation and/or borrowed money from family/friends, one-quarter applied for assistance from patient organizations or providers, 21% missed utility bills, and 17% missed rent/mortgage payments as a result of the high cost of their cancer treatment (CancerCare, 2016).
A 2013 study by Ramsey, Bansal, and Fedorenko examining the link between a cancer diagnosis and the risk of bankruptcy found that adults diagnosed with cancer are three times more likely to declare bankruptcy than adults without cancer (Chi). This statistic is especially troubling considering the finding of a 2016 study by Ramsey, Bansal, and Fedorenko showing that cancer patients who declare bankruptcy are 80% more likely to die earlier than patients who don't (Chi).
Reflecting on her years as manager of psychosocial oncology at Anne Arundel Medical Center, Ashley Varner, MSW, says, "I find fear of FT to be the stickiest of sticky wickets. It often gets me in the door with patients who otherwise would not recognize a need for a social worker, which is an unexpected gift. However, addressing financial toxicity is time consuming and success is extraordinarily difficult."
The Role of Psychosocial Expertise on an Oncology Team
Frequently, patients and family members experience depression, anxiety, and hopelessness as a result of not only the cancer diagnosis but also the burden of treatment. These often go unaddressed.
There are validated tools that can be used to evaluate the stress of FT on individuals/families to help better inform treatment decisions. As members of oncology teams, social workers can advocate for their introduction in the clinical workflow. One such tool, the COmprehensive Score for FT, or COST, measure, has demonstrated reliability and validity in measuring FT. Its correlation with health-related quality of life, a multidimensional concept that includes domains related to physical, mental, emotional, and social functioning, indicates that FT is a clinically relevant patient‐centered outcome (de Souza, et al., 2017).
According to AARP, "[I]nsurance and health care company Kaiser Permanente has adopted a 'level of distress' questionnaire to help care providers explore 37 possible stressors for patients, including 'spiritual/religious concerns' and 'sexuality/fertility.' Appropriately, the first eight items raise matters such as housing, bills, employment, and other money issues."
While it is often not possible to fully alleviate FT, there are myriad psychosocial interventions that social workers can use to decrease overall cancer-related distress: cognitive behavioral therapy, strengths-based approach, family and group support, mindfulness meditation, and meaning-centered therapy.
Social workers are experts in systems. Through early assessment designed to understand patients' strengths and needs, social workers can introduce education on how to manage the medical, family, work, and extended support systems that are central to reducing distress and supporting treatment adherence.
Bryan Miller, MSW, LCSW, OSW-C, director of psychosocial support services at Atlanta Cancer Care, shares the following creative response: "The physicians, leadership, and staff at the medical oncology practice where I work have long recognized the FT associated with cancer. In response, a 501(c)(3) nonprofit foundation was established to help address the financial stress that many cancer survivors and their families face, particularly while undergoing treatment."
Early referrals to patient navigators, often the domain of social work, can identify helpful financial resources including copay assistance programs.
Addressing the Issue
There is no easy solution to FT. It is a growing problem with many varied stakeholders and will need a collaborative effort to address. At the same time its influence on patient and caregiver outcomes and quality of life provides opportunities for social workers to advocate and develop creative solutions to help address the problem as well as mitigate the emotional and psychological impact on families.
With growing emphasis on value-based care, shared decision-making that includes patients as partners in the treatment planning process can help identify and address potential financial hardship. Patients and families deserve to understand, before treatment begins, what to expect financially, physically, emotionally, and logistically. Oftentimes, the simple act of validating and normalizing people's concerns while educating them to support resources can go a long way in alleviating the stress associated with FT and provide mental acuity to make informed decisions before it becomes a crisis.
Mabel's absence alerted the social worker, who contacted Mabel. She was able to identify transportation services as well as explore options to help with copays. Recognizing that Mabel was isolated and depressed, she also arranged for a health care aide during radiation and began calling Mabel once a week to provide emotional and strengths-based counseling as well as arrange for a family meeting with one child on the phone and another in the room with Mabel, so they were up to date on her pressing needs.
Extensive national and local support resources are available to cancer patients. Those of us who counsel them should share pertinent information as freely as we can.
— Richard Dickens, MS, LCSW-R, is director of client advocacy of CancerCare.
Copay Assistance Programs:
• CancerCare Co-Payment Assistance Foundation: www.cancercare.org/copayfoundation, 866-552-6729
• Patient Access Network Foundation: https://panfoundation.org/index.php/en, 866-316-7263
• Patient Advocate Foundation: www.patientadvocate.org, 800-532-5274
• CancerCare: www.cancercare.org, 800-813-4673
• Cancer Support Community: www.cancersupportcommunity.org, 888-793-9355
CancerCare. (2016). CancerCare Patient Access & Engagement Report. Retrieved from https://media.cancercare.org/accessengagementreport/FINAL-CancerCare-CAPER-10May2016-hsp.pdf.
Chi, M. (2017). The hidden cost of cancer: Helping clients cope with financial toxicity. Clinical Social Work Journal, 1-9.
de Souza, J. A., Yap, B. J., Wroblewski, K., Blinder, V., Araújo, F. S., Hlubocky, F. J., et al. (2017). Measuring financial toxicity as a clinically relevant patient-reported outcome: The validation of the COmprehensive sScore for financial Toxicity (COST). Cancer, 123(3), 476-484.