Breaking the Bank: Financial Toxicity in Cancer Care

The American Cancer Society estimates there will be nearly 1.9 million new cancer diagnoses in 2021.¹ As the global cancer burden continues to grow, the expected number of patients receiving chemotherapy will increase from 9.8 million to 15 million per year over the next 2 decades.² These patients will face the stress, anxiety, and uncertainty that comes with not only a cancer diagnosis, but also, increasingly, how to afford their cancer treatments.

Globally, the market for cancer drugs will grow from $164 billion in 2020 to an estimated $269 billion by 2025.³ Spending on cancer drugs in the US reached $71 billion in 2020, and Medicare estimates that one-third of all their cancer expenditures are for cancer drugs.^3,4 By 2030, the total cost of cancer care in the US will approach $250 billion.⁵

For these reasons, the question of why health care costs so much remains a pertinent issue to address. Many factors contribute to the increasing cost of care, including a growing and aging popula- tion, changes in disease prevalence or incidence, increased service utilization, and an increase in service prices. A recent study investigating the causes of increases in US health care cost found that a primary driver of cost was the increase in service price and intensity (Table 1).⁶ The US has service utilization rates comparable to the rates of other countries but spends almost twice as much on those services.⁷

Although there is no formal definition, financial toxicity is a term used to describe problems that patients have related to the cost of their medical care.⁸ Financial toxicity is the unintended, yet often predictable, consequence and adverse effect of the financial burden experienced by patients because of their treatment.^8,9

The financial burdens of health care are increasing across various fields but are particularly prominent in cancer care. Although many factors contribute to the increasing cost of oncology care (Box⁶), in the past, hospitalizations were the driving factor of excessive costs. Today, however, there is a shift in cancer care practice to the increasingly expensive chemotherapy and biologics that patients are receiving.⁶

Prevalence of different measures of financial toxicity tend to vary because many studies only measure 1 aspect of financial hardships, are limited to single institutions or specific geographic locations, or are focused on selected samples of cancer survivors. Factors that have been shown to affect financial toxicity include high out-of-pocket costs, loss of productivity, asset depletion, medical debt, and the anxiety associated with financial distress.⁹

The financial burden of medical care, especially cancer care, deeply affects patients. In 2018, US patients paid $5.6 billion out of pocket for cancer treatments, which can pose a significant financial burden on these patients and their families.¹⁰ A 2013 study of Medicare beneficiaries found that almost 50% of patients with cancer spent 10% of their income out of pocket and that 28% spent 20% of their income.¹¹ A Kaiser Family Foundation and Los Angeles Times survey found that 20% of patients with cancer have been contacted by collection agencies due to medical debt and that 9% reported filing for bankruptcy.¹² With these available data, it is not surprising that the leading cause of bankruptcy in the US is medical debt.¹³ As the average cost of cancer care continues to skyrocket and the out-of-pocket demands increase, patients face the effects of this financial toxicity.

Cancer survivors also have added financial burdens. In 2019, there was an estimated 17 million cancer survivors in the US, and the number of survivors will continue to grow over the next 10 years. In a study examining cancer survivors from 2008 to 2010, cancer survivors had annual out-of-pocket expenses of $1107 compared to noncancer patients’ out-of-pocket expenses of $617 annually.¹⁴ In a more recent analysis of the 2011 to 2016 Medicare Expenditure Panel Survey, investigators found that annual out-of-pocket expenses for cancer survivors was $1000 versus $622 for a matched cohort.^15,16

Patients with cancer also have a significant issue with loss of productivity. Overall, employed patients with cancer miss 22.3 more workdays than those without cancer.¹⁷ The probability that patients with cancer are employed decreases 9% within 3 years of receiving a diagnosis and does not improve in the fourth and fifth years if patients are still alive.⁹

In a study examining data from 2008 to 2011, the annual per capita productivity loss was measured at $3719 for male and $4033 for female cancer survivors compared with noncancer patients at $2260 and $2703, respectively. Additionally, employment disability accounted for 75% of this loss of productivity, with one-third of cancer survivors reporting that they experienced work limitations and a decreased ability outside of work to do daily activities. Furthermore, employed cancer survivors reported that cancer interfered with physical tasks (25%) and mental tasks (14%) required by their job.¹⁸

Risk Factors for Financial Toxicity for Cancer Patients

Factors leading to an increased risk of financial toxicity can be broken down into defined categories, including socioeconomic, insurance related, disease related, treat- ment related, and end-of-life care (Figure).⁹

Demographic factors

Race and socioeconomic status are strong indicators for overall health care disparities and have strong correlation with disparities in cancer outcomes, including survival and increased risk of financial toxicity.¹⁹ Non- White race, Hispanic ethnicity, and female gender are associated with a significant risk of financial distress.²⁰ Household factors such as the wage-earner status of the patient, especially if the patient is the primary wage earner in the household, the income of other household members, the pre-illness debt load, and the total house- hold assets all influence the ultimate monetary impact of the cancer diagnosis and treatment.19 Employment status is also a risk factor that can change throughout the course of the cancer due to the increased risk of loss of productivity and unemployment.²⁰

Lastly, age is a significant indicator of financial toxicity, with younger patients with cancer being more affected than older patients with cancer. Younger patients have a lack of savings and assets with associated lower incomes because they are often just starting careers and have competing financial obligations, such as children and student loan debt. The younger patient lacks the safety-net protection of Medicare coverage and may have a high-deductible health plan that forces a significant out-of-pocket expense, be underinsured, or have no health insurance at all.²¹ Thus, financial hard- ship was twice as frequent in patients aged 18 to 54 as compared to those patients older than 65 years.²⁰

Insurance-coverage issues

Health insurance status is a significant predictor of financial toxicity. A lack of health insurance and high- deductible plans increase risk for financial toxicity significantly.21 This is, again, especially true for younger patients.

Patients without health insurance are more likely to experience financial burdens than those with health insurance and even those with partial insurance. Additionally, Medicaid patients have a higher financial burden versus patients with Medicare, supplemental, and commercial insurance.²⁰

Disease-related factors

The type of cancer can also contribute to risk of financial toxicity; however, no single tumor type, stage, or histology is a predictor on its own.²⁰ However, tumors that are in advanced stages, have a poor prognosis, are recurrent, or require multiple hospital admissions put patients at higher risk of financial toxicity.^20,21

Treatment-related factors

Those patients getting chemotherapy and/or radiotherapy tend to have greater financial hardship; this hardship increases further among patient populations with underlying comorbidities who are undergoing chemotherapy and/or radiotherapy.22 With the cost of cancer drugs routinely exceeding $10,000 per month,10 the median monthly cost of cancer drugs far exceeds the median monthly household income.²³ Thus, patients receiving chemotherapy are more likely to experience financial toxicity than patients receiving only radiation or surgery.

Additionally, the greater duration of therapy, such as the growing trend of maintenance immunotherapy, and an increased intensity of therapy, are associated with increased financial burden, especially in tumors requiring chronic long-term therapies, such as multiple myeloma or chronic myelogenous leukemia.^20,24 In this way, the financial burden does seem to continue when the time from treatment increases; however, few studies are currently investigating this issue in detail.²⁰

Measuring Financial Toxicity

The definition of financial toxicity varies in the literature; therefore, the ability to objectively measure financial toxicity has been a significant challenge. For this reason, most current published studies measure financial toxicity using self-developed questionnaires.²⁵ To help standardize the measurement of financial toxicity, the COmprehensive Score for financial Toxicity (COST score) was developed in 2014 and later validated in patients with cancer in the United States.²⁶ The COST score is a patient-reported outcome measure based on an 11-item questionnaire, including 1 item on financial spending, 2 items on financial resources, and 8 items focusing on the psychosocial response to patients’ financial situation. Each statement is scored on a Likert scale, which comprises the patient’s COST score. Lower COST values show the patient subjectively feels a higher sense of financial toxicity.

Although this a validated questionnaire, it has yet to be widely adopted in financial toxicity literature, so objectively measuring the extent of financial toxicity continues to be a challenge.

Effects of Financial Toxicity

Literature exploring financial toxicity and its impact on patients is ever growing. To date, many negative outcomes have been associated with financial toxicity, such as symptom burden, survival, quality of life, access to treatment, adherence to therapy, care satisfaction, financial debt, and impacts on caregivers.

In a systematic review published in 2019, the association between financial toxicity and perceived symptom burden was investigated further (Table 2).²⁷ Articles were screened for inclusion based on if they were available on Medline, Embase, or CINAHL and published between 2000 and 2018.

A total of 9 articles were included in the qualitative synthesis, which encompassed more than 11,000 cancer survivors. The articles included were heterogenous in their assessment of financial toxicity, making it difficult to form strong conclusions. Of the 8 articles that evaluated psychological symptoms associated with financial toxicity, 6 of them reported a positive correlation, with increased sense of financial toxicity associated with an increased symptom burden.

In the analysis, the primary psychological symptoms assessed included depression, anxiety, stress, fear of cancer recurrence, spiritual suffering, and overall psychological symptoms. The association between financial toxicity and physical symptoms was less clearly defined by the studies because 2 of the 3 studies reported inconsistent results. This systematic review underlined the need for future studies to further elucidate the relationship between financial toxicity and symptom burden for patients, as well as the need for more consistent and objective methods for evaluating financial toxicity in studies.

A different study aimed the investigation on the relationship between severe financial toxicity and health outcomes.²⁸ The authors included patients aged 21 years and older with cancer (excluding nonmelanoma skin cancers) within the period between January 1, 1995, and December 31, 2009. Data for the analysis were collected from the Western Washington Surveil- lance, Epidemiology, and End Results cancer registry and federal bankruptcy record to show the cumulative risk of filing bankruptcy after cancer diagnosis. The mortality risk was also compared between those who filed for bankruptcy and those who did not.

The study included 231,596 patients who had received a cancer diagnosis, and 4728 of those patients filed for bankruptcy. When assessed, those who filed for bankruptcy were more likely to be younger, female, non-White, have local or regional disease at diagnosis, and have received previous treatment for the malignancy.

A propensity score matched sample was assessed to better compare outcomes for those who did versus did not file for bankruptcy. Baseline variables for the matched sample included sex (male, 54%), race (White, 86%), marital status (married, 60%), urban/ rural residence (urban, 91%), income level based on home zip code, year of diagnosis, age, cancer stage (59%, local), and initial treatment modality. The worst outcomes were for patients with lung cancer who filed for bankruptcy. Additionally, mortality rates among patients with breast, lung, colorectal, or prostate cancer who filed for bankruptcy were significantly higher than those who did not file for bankruptcy.

The investigators concluded that there is a consistent positive association between filing for bankruptcy and earlier mortality after cancer diagnosis. However, they also noted that more studies need to be completed to understand the causality between bankruptcy and increased mortality in patients with cancer.²⁸

The relationship between financial toxicity and patient-reported quality of life is another area of interest. A study used data from the 2010 National

Health Interview Survey, the largest source of health information for US households, and analyzed it using a multivariable regression model to assess the relationship between financial concerns and quality of life.²⁹ The data used in the study included survey responses from 2151 adult cancer survivors. If the interview participant reported they had received a cancer diagnosis at some point in their lives, they were asked, “To what degree has cancer caused financial problems to you and your family?” They then selected a response from a list of choices that included: “a lot,” “some,” “a little," or “not at all.” These answers were then evaluated for correlation with other sociodemographic factors.

In the bivariable analysis, patients who reported a lot of financial burden were less likely to have Medicare as their primary insurance and more likely to be female, younger than 61 years, and non-White; have less than 4 years of college education; and have a total combined household income of $35,000. In the multivariable analysis, self-reported quality of life was inversely correlated with the degree to which cancer caused financial problems. Patients who reported a lot of financial toxicity were 4 times less likely to report quality of life as good or better.

Other independent risk factors for quality of life included age, education, insurance status, and total combined family income. Overall, this study concluded that financial burden is common among cancer patients and is associated with decreased quality of life.

Solutions

No prospective studies have systematically evaluated the effects of interventions designed to reduce financial distress in patients with cancer. However, one 4-step approach has been proposed:⁸

1. Acknowledge and understand the problem.
2. Engage stakeholders.
3. Foster communication.
4. Implement solutions that are different for each patient and for different sites within the health system.

Addressing the problem

The first step to addressing financial toxicity is recognizing that the patient is experiencing financial distress, which can be assessed through the use of validated tools that allow universal screening and early triage for such patients. Universal screening of patients’ financial concerns, triaging potential financial issues, and examining the available financial assistance resources can be a valuable first step.³⁰

Engaging stakeholders

Clinicians have been major advocates of controlling costs for patients, and more than 75% of physicians believe it is their responsibility to discuss the cost of care with patients.³¹

However, major steps in helping to reduce the use of low-value services as outlined by the American Society of Clinical Oncology, American Society for Radiation Oncology, and Commission on Cancer (Table 3) through the Choosing Wisely campaign have not met with provider adoption.³² One study found that the use of low-value services has decreased slightly or even occasionally increased.³³ These findings demonstrate that there is still reluctance to address some practice issues that could affect financial toxicity and that providers still report difficulty when talking to patients about low-value services and when they are not needed for care.³² Cancer care providers must become stewards of health care dollars and help their patients navigate the financial toxicity that is increasingly occurring.

Foster communication

As has been shown, financial toxicity leads to increased mortality, decreased quality of life, rationing or skipping care, and bankruptcy; therefore, the cost of therapy must be considered as an essential part of the overall discussion around the provision of care.

However, providers are concerned about the additional time needed for these types of discussions, as well as their overall lack of expertise in discussing and providing potential solutions to cost issues related to cancer care. Additionally, patients may be concerned that sharing personal information regarding their experience of financial toxicity could lead to their not being given the best possible care available; further- more, other patients may not understand or be prepared for the magnitude of the cost of therapy.

For these reasons, financial counseling and the use of financial navigators should be made available, with the cost of therapy and expected outcomes discussed with the patient before therapy is started.³⁴ Patients should also be encouraged to ask and discuss financial issues they are having with their care provider.

In a Mayo Clinic study, more than 500 recordings of health care conversations between physicians and patients were analyzed to study whether the cost of an impending course of cancer treatment was discussed. The results showed that fewer than one- third of patients questioned the cost of the proposed cancer treatment. Of those conversations, approximately 60% of physicians acknowledged that there could be a potential financial issue for the patients.³⁵ Other studies have confirmed that less than one-third of patients with cancer have engaged in financial discussions with their health care providers; however, most patients report positive attitudes about having these cost-related discussions.³¹

Although physicians have said they believe that financial discussions about therapy are their responsibility, less than 30% feel comfortable discussing costs, and when such discussions do occur, the duration of the cost discussion may be limited.^31,36 In one observational study, cost discussions occurred in 22% of visits and were initiated by the physician slightly less than 60% of the time, with cost-reduction strategies mentioned only 38% of the time.³⁶ These results help to demonstrate that there is still a significant need for patients and clinicians to pursue and navigate discussions regarding financial issues associated with care, as well as methods to alleviate the issues that are causing patients financial distress.

Individualize solutions

Furthermore, a solution to financial toxicity will not be a “one size fits all” strategy. Each patient has unique challenges, and each institution has unique barriers and opportunities. For this reason, addressing the financial toxicity of each patient will likely take a concerted effort on the part of the institution to recognize the problem, communicate with the patient, determine the patient’s unique needs, and then develop a tailored program to help meet those needs.

In this way, communication with patients that leads to shared decision-making around care plans can allow oncology care providers to cohesively provide stewardship of the health costs for cancer care to patients.³⁷ Additionally, oncology care providers can develop a strategy of creating a financial care plan to go alongside the cancer treatment plan.

Conclusions

Financial toxicity is an increasing problem in cancer care. With cancer costs continuing to increase, the effects of this toxicity are coming into greater focus. Still, at the present, there is no clear and simple solution in sight.

One potential model to address patients' financial toxicity proposes that we maximize value when we maximize clinical, humanistic, and economic outcomes.38 As we develop new therapies, we must recognize that
not all these therapies bring added value to the patient. Small improvements in progression-free survival may not truly offer the benefit we expect when we consider the enormous cost some therapies now demand. As we incorporate the financial distress caused by the excessive cost of cancer care, the value equation begins to change.

In cancer care, we are mostly focused on the clinical outcomes. Although we may, as a field, be progressing in our understanding and appreciation of the humanistic outcomes of the care we provide, it is time that we also turn our attention to the economic outcomes that patients experience under our care in order to maximize the value of that care and minimize patients’ financial toxicity in support of the best possible patient health outcomes.

Allison P. Golbach, PharmD, BCPS, is a clinical oncology pharmacist at the University of Kansas Health System in Kansas City, Kansas.

Scott A. Soefje, PharmD, MBA, BCOP, FCCP, FHOPA, is the director of pharmacy cancer care at the Mayo Clinic in Rochester, Minnesota.

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