Serious illness can bring patients to financial ruin. They often have to quit their jobs to deal with their medical issues, losing both income and health insurance at a time when their out-of-pocket expenses for health care could run thousands of dollars per year. To cope, patients may be forced to cut back on spending for food and housing and skip medication doses, forgo filling prescriptions, or discontinue treatment altogether. Patients have depleted life savings, incurred debt, and declared bankruptcy as a consequence of their illness. The economic burden imposed by health problems has been termed financial toxicity, a problem that could worsen if health insurance companies shift more costs to patients in the form of higher deductibles and copays. Some physicians believe potential financial toxicity should be included in discussions with patients about treatment plans.
“Physicians must play a central role as financial advocates for our patients,” said Courtney M.P. Hollowell, MD, Chairman of Urology at Cook County Health in Chicago, Illinois, the third largest public hospital system in the United States. It serves a particularly vulnerable segment of the population, including racial and ethnic minorities, immigrants, and the under- and uninsured. “They often rely on us to provide them with information about treatment efficacy and side effects when making critical management decisions. We order imaging, prescribe medications, provide referrals and recommend surgery — almost always without ever addressing how much all of it costs.”
Daniel D. Joyce, MD, a urologic oncology fellow at Mayo Clinic in Rochester, Minnesota, said financial toxicity, like drug toxicity, should be included in physician-patient discussions about treatment options. “Indeed, financial toxicity has been associated with worse quality of life, symptom burden, and even survival, further supporting its inclusion in shared decision-making,” Dr Joyce said.
Worse Therapeutic Adherence
Research shows that cost concerns can lead to lack of adherence to treatment. Findings from a recent survey of adult patients with cancer and cancer survivors found that financial toxicity is associated with decreased use of prescription medications and increased concern about cancer returning or getting worse, Kelly Chan, of the University of California San Diego in La Jolla, and colleagues reported in a 2022 article in Exploratory Research in Clinical and Society Pharmacy.1 Survey responses from 609 patients revealed that those who were ever worried about paying large medical bills, compared with those who were not, had significant 4.5-fold increased odds of avoiding buying necessary prescriptions and 2.8-fold increased odds of worrying about cancer returning or getting worse.
Recent research suggests that discussions between physicians and patients about the financial burden of treatment are frequently absent. In a survey of women with early-stage breast cancer and their physicians, 55.4% of those who expressed a desire to speak with their providers about the impact of breast cancer on employment or finances reported no relevant discussion with their cancer physicians, primary care providers, social workers, or other professionals, Reshma Jagsi, MD, DPhil, of the University of Michigan in Ann Arbor, and colleagues reported in a 2018 article in Cancer.2 The survey also revealed that financial toxicity was common, with 21.5% of White, 22.5% of Asian, 45.2% of Black, and 35.8% of Latina patients reporting they had to reduce spending on food.
The Burden of Medical Debt
The reality of financial toxicity is reflected in statistics on medical debt. In 2019, 23 million adults in the United States had significant medical debt, defined as more than $250, according to a Kaiser Family Foundation analysis of data from US Survey and Income Program Participation, a statistical survey conducted by the US Census Bureau. Of these, 26% owed more than $5000.3
In an analysis of 9.5 million estimated new diagnoses of cancer from 2000 to 2012 published in the American Journal of Medicine in 2018, Adrienne M. Gilligan, PhD, and colleagues found that 42.4% of patients depleted their entire life’s assets at 2 years after a cancer diagnosis and 38.2% were financially insolvent at 4 years.4
A study of claims data from January 2019 to January 2021 for 2,854,481 commercially insured adults published recently in JAMA Internal Medicine found an association between burden of chronic disease and adverse financial outcome.5 Overall, 9.6% had medical debt in collections, 8.3% had nonmedical debt in collections, 16.3% had delinquent debt, 19.3% had a low credit score, and 0.6% had a recent bankruptcy, Nora V. Becker, MD, PhD, of the University of Michigan in Ann Arbor, and colleagues reported. Among patients with debt in collections, the estimated amount increased with the number of chronic conditions, from $784 for patients with no chronic conditions to $1252 for those with 7 to 13 conditions.
Newer Drugs Are Especially Costly
Medication costs can be a big part of patients’ economic distress. This is especially the case with newer drugs, as Dr Joyce and colleagues demonstrated in a study of 13,409 commercially insured men with advanced prostate cancer.6 Mean treatment-related out-of-pocket costs for novel hormonal therapies for advanced prostate cancer in the first year of treatment was $4236, they reported recently in The Journal of Urology. By comparison, first-year treatment-related out-of-pocket costs for androgen deprivation therapy and nonandrogen systemic agents — both older conventional treatments — were $165 and $994, respectively.
Dr Joyce and his colleagues concluded that their study findings “support inclusion of a discussion regarding treatment costs as a component of shared decision making and should guide future efforts to identify and ameliorate financial toxicity in this patient population.”
A Focus on Cancer
Although many types of medical problems can result in financial toxicity, much of the attention given to it comes from the cancer care community. In fact, the term financial toxicity was introduced by oncologists S. Yousuf Zafar, MD, MHS, and Amy P Abernethy, MD, PhD, at Duke Cancer Institute in Durham, North Carolina, in a 2013 article in Oncology.7 “Out-of-pocket expenses related to treatment are akin to physical toxicity, in that costs can diminish quality of life and impede delivery of the highest quality care,” they wrote.
And it was a team led by medical oncologist Jonas A. De Souza, MD, of The University of Chicago Medicine, that developed and validated the Comprehensive Score for Financial Toxicity (COST) questionnaire to assess financial toxicity in patients with cancer.8,9 COST is an 11-item scale that assesses various domains of financial toxicity and distress as it relates to cancer diagnosis and treatment. It asks patients to respond to such statements as: “My out-of-pocket medical expenses are more than I thought they would be” and “I worry about the financial problems I will have in the future as a result of my illness or treatment.” Possible answers include: “Not at all,” “A little bit,” “Somewhat,” “Quite a bit,” and “Very much.”
Physicians generally are reluctant to bring up the financial aspects of medical care with patients. “One of the main reasons physicians avoid conversations about the cost of care is because providers just don’t know how,” said Dr Hollowell, who also is President of the Illinois State Urological Society in Chicago. “Physicians in training are traditionally insulated from information about the cost of the tests and treatments they order for patients. As a result, most physicians are ill-equipped to make the most cost-effective choices for patients and lack the understanding of how these decisions affect patients’ medical bills. Additionally, lack of cost transparency, on the part of the hospital and insurance provider, can make it difficult to access accurate comparative cost information that can be meaningfully shared with the patient.”
Dr Joyce echoes that view. “Part of the difficulty is the lack of data assessing financial toxicity in patients with urologic issues,” he said. “It is challenging to provide patients accurate expectations of financial toxicity when we have limited data to inform those discussions.”
Although many patients and providers are uncertain about how to bring up finances in treatment discussions, research has shown that the majority of patients report a desire to talk to their physicians about the impact of medical costs on their lives.10 To address this reluctance and practice gap, Dr Hollowell said, the Cook County Health Cancer Center has designed an educational toolkit to assist providers with cost conversations adapted from the COST questionnaire. The answers patients provide can serve as a cost conversation guide to identify those who may warrant further discussion about the cost of care.
Shared decision-making, Dr Hollowell said, should focus on the treatment benefits of value-based care. Physicians should discourage the use of interventions that have little benefit but high costs and reduce unnecessary duplication of studies such as laboratory assessments and imaging. “Otherwise, our patients experiencing financial toxicity are forced to make real-life, cost cutting-decisions like electing not to fill prescriptions or non-adherence to costly medications, skipping medical visits, [and] cutting back on food, clothing, and housing costs. Non-compliance can easily be mistaken for patients experiencing financial toxicity,” Dr Hollowell said.
Dr Hollowell noted that all patients seen at Cook County Health Cancer Center are routinely screened for financial toxicity. Providers are encouraged to integrate financial impact into shared decision-making discussions. “To optimize patient-centered care, I encourage providers to begin financial toxicity screening and cost conversations during the initial patient visit,” he said.
In his practice, Dr Joyce tries to incorporate treatment costs into his discussions with patients. “First, I try to get a sense of the baseline financial strain a patient is under,” Dr Joyce related. “In my experience, this can often be straightforward to ascertain, as patients are generally open about what they can and can’t afford. Second, I seek out data that helps me better understand the out-of-pocket costs associated with the treatments I prescribe. This helps me have a general idea of whether ‘treatment A’ is on average significantly more expensive for patients than ‘treatment B’. Finally, I try to resist the urge to brush off cost concerns as ‘not my problem’ and identify resources that my patients can access to help them navigate these issues. In many cases, financial assistance programs exist that help obviate the need for management tailoring due to financial toxicity concerns.”
Reduced spending on food is among the consequences of financial toxicity, and it can lead to adverse clinical outcomes. In a 2022 article in the Journal of the National Cancer Institute, Margaret Raber, DrPH, of Baylor College of Medicine in Houston, Texas, and colleagues wrote about the importance of nutrition during cancer treatment.11 They addressed the impact of food insecurity, which may be a result of cancer treatment and its impact on household finances, with data showing that it is associated with worse clinical outcomes, they noted.
“Maintaining adequate nutrition is critical to cancer therapy success,” they wrote. “Food insecurity during and after cancer treatment may undermine therapy goals and treatment success and may also add a layer of difficulty to mitigating the side effects of many cancer treatments.”
Loss of appetite, changes in olfaction and taste, and difficulty chewing and swallowing are among the adverse side effects of common cancer treatments, according to the authors. “Adapting to these changes in taste and symptoms requires flexibility in food purchasing and preparation, which is difficult while experiencing food insecurity.”
Awareness of the need for patients with cancer to maintain adequate nutrition has prompted some institutions to address the issue. For example, the University of Chicago Medical Center launched Feed1st in 2010 to operate food pantries at various locations around the Chicago.11 Feed1st is designed to eliminate widely known access barriers, including stigma and burden resulting from having to show proof of need and inconvenient hours of operation. Feed1st pantries distribute shelf-stable foods in various locations, such as inpatient pediatric oncology and outpatient adult oncology units and waiting areas.
A ‘Financial Toxicity Tumor Board’
To deal with financial toxicity, the Levine Cancer Institute in Charlotte, North Carolina, in 2019 created what it calls the Financial Toxicity Tumor Board. The board is linked to a patient assistance program (PAP) for oncologic pharmaceutical agents. As reported in a 2021 article in JCO Oncology Practice by Derek Raghavan, MD, PhD, and colleagues, the PAP served 1749 and 1819 patients in 2019 and 2020, respectively, saving patients approximately $55.4 million and $60.7 million in those years, respectively.12 Board members include physicians, nurses, nursing and medical administrators, the institute’s chief financial officer, financial counselors, social workers, nurse navigators, and oncology pharmacy personnel. The board meets monthly to address complex fiscal issues, identify frequent or repeated problems that require changes in standard operating procedures, and discuss in detail cases that were not handled effectively by standard patient and financial support operations, Dr Raghavan and his coauthors wrote.
To illustrate how the tumor board functions, the authors of the article described a case involving a 64-year-old patient undergoing adjuvant chemotherapy after surgery for a pancreatic tumor. Months after treatment began, the patient received notice that their insurer denied the chemotherapy claims, noting a required precertification was never obtained, according to the article. A review of the denied claim showed that one of the drugs in the treatment regimen required precertification through the patient’s pharmacy benefits rather than the medical plan, “which was outside the norm for outpatient chemotherapy.” The insurer billed the patient $42,000 for the denied medication. The tumor board took up the case after the patient asked for assistance from the institute’s financial counseling team. A financial counselor was able to secure a retroactive and ongoing precertification for the entire course of treatment, effectively eliminating the patient’s financial responsibility.
The institute also implemented a program in which pharmacy technicians are embedded in physician office practices “to track and coordinate expensive oral medication needs for patients.” These technicians handle prior authorizations, copay assistance, free drug procurement, and directing to appropriate specialty pharmacies based on a patient’s insurance.
Calls to Action
Comments in the medical literature reflect the concern about the financial consequences of health care costs to patients and the need for health care provider involvement. In their Cancer report detailing the findings of their survey of women with breast cancer and their physicians, Dr Jagsi and coauthors observed, “Efforts must now turn to confront the financial devastation that many patients face, particularly as they progress into survivorship. The first steps for clinical practice and policy are clear: all physicians must assess patients for financial toxicity and learn how to communicate effectively about it.”2
“As the price tags associated with cancer continue to rise and patients assume more responsibility for their treatment, it will become increasingly important for us to be able to discuss with our patients the trade-offs associated with more or less costly therapeutic options,” Matthew J. Resnick, MD, MPH, wrote in a 2019 editorial in The Journal of Urology in response to the aforementioned study by Dr Gilligan and colleagues. “Doing so will increase the likelihood that we are able to align patient preferences with treatment decision making.”13
In the same journal, Matthew Mossanen, MD, of Dana-Farber Cancer Institute in Boston, and Angela B. Smith, MD, of the University of North Carolina at Chapel Hill, wrote in a 2018 commentary, “By recognizing the importance of patient level cost in decision making, we are in a position to take practical steps to address the common and corrosive consequences of financial toxicity of cancer treatment.”14
“In the context of patient-centered cancer care, the clinician plays a central role not just in the delivery of high-quality medical treatments but also in helping contain the financial burden and distress to an individual patient with cancer in the short term, and for all patients with cancer in the long term,” Pricivel M. Carrera, LLM, PhD, and coauthors wrote in a 2018 article in CA: A Cancer Journal for Clinicians. “More than anyone in the multidisciplinary team of care, the oncologist may be the professional most able to integrate the diverse components of patient care.”15
Despite their possible discomfort about bringing up treatment costs with patients, physicians should make the effort because it is in the best interest of their patients, according to Dr Hollowell.
“Although physicians are often ill-prepared for patient-provider communication about the financial costs and burdens of treatment, patients experiencing financial toxicity report significantly worse outcomes,” he said. “As a result, discussing out-of-pocket costs related to treatment can affect not just our patients’ emotional well-being but how they respond to treatment, compliance, quality of life, and survival.”
Moreover, as Dr Joyce pointed out, financial toxicity “is a valuable patient-reported outcome that places the cost of treatments in a context that clinicians are familiar and comfortable with.”
- Chan K, Sepassi A, Saunders IM, Goodman A, Watanabe JH. Effects of financial toxicity on prescription drug use and mental well-being in cancer patients. Explor Res Clin Soc Pharm. 2022;14;6:100136. doi:10.1016/j.rcsop.2022.100136
- Jagsi R, Ward KC, Abrahamse PH, et al. Unmet need for clinician engagement regarding financial toxicity after diagnosis of breast cancer. Cancer. 2018;124:3668-3676. doi:10.1002/cncr.31532
- Rae M, Claxton G, Amin K, Wager E, Ortaliza J, Cox C. The burden of medical debt in the United States. Kaiser Family Foundation website. Published online March 10, 2022.
- Gilligan AM, Alberts DS, Roe DJ, Skrepnek GH. Death or debt? National estimates of financial toxicity in persons with newly diagnosis cancer. Am J Med. 2018;131(10):1187-1199.e5. doi:10.1016/j.amjmed.2018.05.020
- Becker NV, Scott JW, Moniz MH, Carlton EF, Ayanian JZ. Association of chronic disease with patient financial outcomes among commercially insured adults. JAMA Intern Med. 182(10):1044-1051. doi:10.1001/jamainternmed.2022.3687
- Joyce DD, Sharma V, Jiang DH, et al. Out-of-pocket cost burden associated with contemporary management of advanced prostate cancer among commercially insured patients. J Urol. 2022;208(5):987-996. doi:10.1097/JU.0000000000002856
- Yousuf Zafar S, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncology. 2013;27(2):80-81.
- de Souza JA, Yap BJ, Hlubocky FJ, et al. The development of a financial toxicity patient-reported outcome in cancer: The COST measure. Cancer. 2014;120(20):3245-3253. doi:10.1002/cncr.28814
- de Souza JA, Yap BJ, Wroblewski K, et al. Measuring financial toxicity as a clinically relevant patient-reported outcome: The validation of the Comprehensive Score for financial Toxicity (COST). Cancer. 2017;123(3):476-484. doi:10.1002/CNCR.30369
- Alexander GC, Casalino LP, Meltzer DO. Patient-physician communication about out-of-pocket costs. JAMA. 2003;290(7):953-958. doi:10.1001/jama.290.7.953
- Raber M, Jackson A, Basen-Engquist K, et al. Food insecurity among people with cancer: Nutritional needs as an essential component of care. J Natl Cancer Inst. Published online September 21, 2022. doi:10.1093/jnci/djac135
- Raghavan D, Keith NA, Warden HR, et al. Levin Cancer Institute Financial Toxicity Tumor Board: A potential solution to an emerging problem. JCO Oncol Pract. 2021;17(10):e1433-e1439. doi:10.1200/OP.21.00124
- Resnick MJ. Editorial comment. J Urol. 2019;201(6):1045. doi:10.1097/01.JU.0000554799.88126.46
- Mossanen M, Smith AB. Addressing financial toxicity: The role of the urologist. J Urol. 2018;200:43-45. doi:10.1016/j.juro.2017.10.039
- Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: Understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin. 2018;68(2):153-165. doi:10.3322/caac.21443.