Financial toxicity: A growing burden for cancer patients

Over the course of the last 25 years, major advancements in cancer diagnostics and treatment have led to significant improvements in clinical outcomes. However, the cost of therapy, including chemotherapy, targeted agents, and more recently, immunotherapy, is substantial. Approximately 5 percent of the U.S. population, or 15.5 million people, are cancer survivors, incurring not only initial diagnostic and treatment costs, but also long-term costs throughout survivorship.¹ Cancer is now the second most expensive disease in the U.S., with an estimated health care cost of $124 billion in 2010 that is expected to rise to $157 billion in 2020.²

As cancer-related health care expenses are increasing, insurance plans now require more cost-sharing, shifting a greater proportion of treatment costs directly to the patient, resulting in a significant financial burden for many cancer patients. This article reviews how financial toxicity is defined and measured, identifies which patients are most at risk, and outlines the relevance of this issue for surgeons. Additionally, the article reviews ongoing clinical trials investigating this issue and discusses opportunities for engagement and intervention for surgeons who provide cancer care in the U.S.

What is financial toxicity?

Financial toxicity describes the impact of direct and indirect health care costs that lead to significant financial burden for patients and their caregivers, resulting in increased psychosocial distress, diminished patient outcomes, and poorer quality of life. A patient’s experience with health care costs is a dynamic one that may last throughout the longitudinal continuum of care, typically with increased direct health care costs during their initial diagnosis and treatment, and greater indirect costs, such as loss of productivity or impaired quality of life, affecting patients during survivorship.³

Direct costs

The cost of cancer therapeutics has increased sharply as new drugs, including targeted therapies and immunotherapy, have been introduced into the market. In 2000, the average annual cost of cancer drugs ranged from $5,000 to $10,000. Now, with the addition of targeted therapies and biologic agents, these costs have increased to more than $100,000 annually for some patients.⁴ For example, the addition of bevacizumab to six months of treatment with FOLFOX (fluorouracil, leucovorin, and oxaliplatin) increased therapeutic costs for patients with metastatic colorectal cancer between 213 percent and 357 percent.⁵

To accommodate these rising costs, insurance companies have shifted a greater proportion of these expenses to patients in the form of increased deductibles, restrictions in specialty medication plans, and higher copayments.⁶ Greater cost-sharing has resulted in a dramatic increase in out-of-pocket expenses for patients, which may continue many years after initial diagnosis. Several studies have attempted to quantify out-of-pocket costs, which vary based on the specific cancer type and associated treatment regimen and can be difficult to directly measure. A 2010 national study found that recently diagnosed cancer patients younger than 65 years old reported $1,107 in annual out-of-pocket health care spending, compared with $617 among patients without a history of cancer.⁷ Another study identified a cumulative two-year out-of-pocket cost of $4,727 for patients with cancer versus $3,209 for noncancer patients.⁸

In any other consumer-based market, price transparency is expected; however, in health care, neither physicians nor patients have direct knowledge of the specific cost for diagnostic tests and treatment for an individual patient. The Centers for Medicare & Medicaid requires all hospitals to make their charges readily available on the Internet to promote price transparency. However, this information can be difficult to understand or use to generate an accurate estimate of total cost because, typically, multiple source charges are cited for a given procedure or treatment (that is, hospital, professional, supply, and pharmaceutical charges). Even with this information available, the actual cost for an individual patient differs depending on the patient’s specific insurance plan, which may involve varying deductibles, copayments, and other out-of-pocket costs.

Indirect costs

Direct health care costs are not the only driver of financial toxicity for cancer patients. These patients also experience loss of work productivity, which can include a reduction in work hours, missed days at work, or even loss of employment due to poor health. One study using results from 89,520 patients who completed the Medical Expenditure Panel Survey found that patients undergoing cancer treatment missed 22.3 more workdays per year than individuals without cancer treatment.⁹ In a longitudinal study of 267 women with stage I–III breast cancer who were employed at the time of diagnosis, 81 percent had retained their jobs four months after completion of treatment. However, low-income women were disproportionately affected, with only 57 percent having retained their jobs versus 95 percent of high-income women.¹⁰

In addition, loss of employment limits access to employment-based benefits, including health insurance, which can further compound cancer-related health care costs. Furthermore, job loss is associated with an increased risk of bankruptcy. In a matched study of nearly 200,000 people in Washington State, cancer patients were 2.65 times more likely to go into bankruptcy than patients without cancer.¹¹ Bankruptcy, in turn, is associated with a higher risk of death among cancer patients.¹²

Cancer-related health care costs can also lead to asset depletion. Between 33 to 80 percent of cancer survivors have used their savings to pay for medical expenses, which, for many, results in significant medical debt.¹³ This expense can have additional lasting effects on personal credit and retirement savings. In one study of 284 patients, mean debt among colon cancer survivors in Washington State was $26,860 in 2009 dollars.¹⁴

Finally, financial toxicity describes not only the measurable financial impact in dollars, but also the personal stress and financial worry experienced by cancer patients and their families. Between 22 and 64 percent of patients with cancer report stress or worry about paying medical bills.^15,16 More financial distress can lead to increased psychological distress, especially among cancer patients already at risk of significant emotional distress, anxiety, and depression.¹⁷

Who is at greatest risk?

Not all patients are affected by the cost of cancer treatment in the same capacity. Not surprisingly, low-income patients and uninsured patients are more likely to experience financial toxicity.¹³ However, other patient populations also are disproportionately affected, specifically younger and minority patients. Although cancer has traditionally been thought to affect the elderly, nearly half (46 percent) of new cancers are diagnosed in the working-age population (20–65 years old).¹⁸ Because younger patients may have less savings and fewer assets, as well as potential educational debt and financial responsibilities, including young children, they may be ill-equipped to manage the out-of-pocket costs for cancer care. In a study of 1,200 adult cancer survivors, material financial hardship, including loans, debt, and inability to pay for care, was more common among cancer survivors younger than 65 years of age than among patients ages 65 or older (28.4 percent versus 13.8 percent).¹⁶ Also, cancer treatment, even for curable diseases, can result in employment effects that are particularly devastating for young-age-at-onset patients.

Minorities also are at increased risk of financial distress. In at least one study, African-American colorectal cancer patients self-reported a higher economic burden secondary to cancer treatment than white patients.¹⁹ Given the observed racial disparities in mortality rates among a number of cancer diagnoses, further research on racial differences and the financial impact of cancer care delivery is warranted.

Patients who require more intense treatment, including chemotherapy or radiation, also have a higher risk of financial hardship. In the 2010 National Health Interview Survey of 1,556 cancer survivors, patients treated with chemotherapy reported a higher financial burden than patients who did not require chemotherapy (47 percent versus 31 percent).²⁰ The same finding was observed among patients who received radiation therapy (45 percent versus 31 percent). In another study, women with breast cancer who were treated with chemotherapy were significantly less likely to return to work at six months than women who did not undergo chemotherapy.²¹

Similarly, in a study of stage III colon cancer patients, 45 percent of working individuals lost their jobs as a result of their cancer diagnosis and treatment.²² Job loss was significantly associated with access to paid sick leave; 59 percent of survey respondents with paid sick leave retained their jobs, versus 33 percent of the respondents without paid sick leave.

Why is financial toxicity relevant to surgeons?

Not only does the financial burden of cancer care affect a patient’s personal finances and psychological well-being, but it also can lead to delayed diagnosis and treatment. A recent study of 131,179 breast cancer patients whose employers switched from a low-deductible insurance plan ($500 or less) to a plan with high deductibles ($1,000 or more) found more significant delays in diagnosis and treatment than matched controls with low-deductible enrollment.²³ Low-income women with high-deductible plans experienced a 1.6-month delay to first breast imaging, 2.7 months to first biopsy, 6.6 months to early-stage breast cancer diagnosis, and 8.7 months to first chemotherapy. Interestingly, even high-income women with high-deductible plans experienced delays. Although the data are limited to date, a similar phenomenon would be expected in other cancer patients, which could result in more advanced disease at presentation.

In addition to delays in care, financial toxicity also affects treatment adherence. In a large study of nearly 2,000 cancer patients, participants with financial toxicity were more likely to report noncompliance with medication, indicating an inability to afford prescription drugs.²⁴ The same patients reported forgoing mental health care, physician visits, and medical testing, which they attributed to lack of insurance, being unable to afford household expenses, or both. Similarly, 27 percent of patients reported medication nonadherence in a cross-sectional survey of adult cancer patients at Duke Cancer Institute, Durham, NC, of which 14 percent skipped doses and 11 percent took less than prescribed to make the prescription last longer.²⁵ Another 22 percent did not fill the prescription because of cost. Among Medicare Part D patients taking one of the five top-selling oral cancer medications covered in Part D in 2008, 70 percent reported discontinuation because of the expensive out-of-pocket costs.²⁶

With increasing use of preoperative therapy for many disease sites, nonadherence to oral cancer medications or chemotherapy could have a significant impact on surgical management. Surgeons also should anticipate that if patients struggle to comply with primary cancer treatment because of financial limitations, they may be unlikely to adhere to surveillance recommendations after definitive management.

Furthermore, a significant body of research has demonstrated that increased financial burden results in worse health-related quality of life and increased symptom burden. In one study of patients with colorectal or lung cancer, higher financial distress was associated with lower quality of life. For example, colorectal cancer patients with less than 12 months of financial reserves reported increased symptom burden, increased pain, and lower quality of life than patients with more than 12 months of reserves to maintain their standard of living.²⁷ Even though we may be able to provide definitive, high-quality cancer care, our patients’ quality of life in survivorship may suffer dramatically if we are unable to better manage the resulting financial burden.

Active studies

A number of active clinical trials aimed at better understanding the extent and impact of financial toxicity on cancer patients are being conducted by several national cooperative groups in oncology and through the National Community Oncology Research Program (NCORP) of the National Cancer Institute. The Eastern Cooperative Oncology Group/American College of Radiology Imaging Network (ECOG-ACRIN) Cancer Research Group is conducting a study of patients with primary colorectal cancer titled Longitudinal Assessment of Financial Burden in Patients with Colon and Rectal Cancer Treated with Curative Intent (NCT03516942). This study is designed to measure the change in financial burden that patients experience in the first 12 months after diagnosis of colorectal cancer treated with curative resection. Investigators are collecting data regarding patient use of financial services, changes in patient employment, and the relationship of financial burden with adherence to clinical follow-up guidelines.

In the metastatic setting, the Southwest Oncology Group (SWOG) is conducting the Implementation of a Prospective Financial Impact Assessment Tool in Patients with Metastatic Colorectal Cancer Trial (NCT0272880). In this study, newly diagnosed metastatic colorectal cancer patients and their caregivers complete a baseline financial questionnaire, which is then repeated every three months in the first year of treatment. Other expense measures, such as credit reports, also will be collected to provide additional objective data. Investigators plan to use this information to estimate the incidence and determine the magnitude and timing of financial hardship among metastatic colorectal cancer patients. The study will explore whether financial difficulties are associated with health insurance factors and health-related quality of life as well.

A third study, Work Ability in Young Adult Survivors (NCT03148080), conducted by researchers at Wake Forest University, Winston-Salem, NC, is examining the financial impact of cancer among young adult survivors (any pathology), specifically as it relates to employment or work ability. This study aims to document educational level and employment status among young adult cancer survivors and to describe their relationship to financial toxicity. This study should provide meaningful data regarding the long-term effects of cancer treatment and its association with work ability and subsequent financial distress.

With funding support from the Alliance for Clinical Trials in Oncology Cancer Care Delivery Research Committee, Cindy Matsen, MD, FACS, University of Utah, Huntsman Cancer Institute, Salt Lake City, is conducting a pilot study to understand and address patient and provider preferences as they relate to the cost of breast cancer care. This study focuses on newly diagnosed breast cancer patients and will study an intervention to encourage patient-physician discussion of cost to determine if this activity increases use of financial counseling, improves patient financial well-being, or both.

Opportunities for improvement and engagement

As the primary health care provider to many cancer patients, surgeons are uniquely poised to advance our knowledge of this critical issue and ultimately effect change. Clinical and investigational efforts traditionally have focused on the primary outcomes of treatment toxicity, disease progression, and survival; however, bankruptcy and financial crisis are becoming increasingly relevant outcomes among cancer patients.

Surgeons can participate in clinical trials that address financial toxicity by identifying patients for accrual from a variety of clinical practice settings. Surgeons can work to better understand the financial counseling and program options available at their own institutions and learn how to connect patients with the resources they may need to afford or adhere to treatment. A standardized measurement tool of financial toxicity, such as the COST (Comprehensive Score for financial Toxicity) tool, could be administered by clinical support staff to identify patients who are at the greatest risk of financial toxicity and in need of additional efforts to minimize treatment delays and nonadherence. For some patients, an intervention may be as simple as identifying an affordable and reliable mode of transportation to clinic appointments. As costs continue to increase, we should acknowledge that treatment costs may influence decision making for many of our patients and incorporate this consideration into our discussions with patients and their families.

Future directions

Although the concept of financial toxicity is not new, a number of questions remain. Little is known about the magnitude of financial toxicity by specific cancer sites, which may vary significantly based on the type and duration of treatment. One would expect that patients requiring long-term treatment with immunotherapy might incur greater out-of-pocket costs than patients treated definitively with surgery alone, for example. Similarly, although two patients might undergo the same treatment, the extent of financial distress that each incurs may differ depending on each patient’s baseline financial assets, preexisting debt, caregiver financial support, and type of employment (for example, hourly versus salaried), among other factors. Although some data suggest that insurance plans with increased cost-sharing may have a greater impact on a patient’s subsequent financial burden, the impact of specific types of insurance plans on cancer-related financial toxicity in general is not well understood. Accounting for these factors will prove essential to understanding how to identify those patients at greatest risk. In the future, it also will be critical that we improve price transparency—both for patients and physicians—so that we all make more informed choices about treatment options.

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