Financial Toxicity: A Barrier to Achieving Health Equity in Cancer Care

Abstract

The disproportionate impact of coronavirus disease 2019 on racial/ethnic minorities and low–socioeconomic status households, along with the high-profile murders of Black individuals by police officers in 2020, elicited multiple calls from the public to address systemic injustices across multiple systems (eg, criminal justice, health care) and for several US counties and states and medical and health societies to declare racism as a public health crisis [1Krieger N. Enough: COVID-19, structural racism, police brutality, plutocracy, climate change—and time for health justice, democratic governance, and an equitable, sustainable future.Am J Pub Health. 2020; 110: 1620-1623Crossref PubMed Scopus (0) Google Scholar]. This sustained national discussion has encouraged the health care delivery system to evaluate its role in perpetuating racial discrimination through inequitable care delivery and to tackle barriers to health equity [2Stein J.N. Charlot M. Cykert S. Building toward antiracist cancer research and practice: The case of precision medicine.JCO Oncol Pract. 2021; 17: 273Crossref PubMed Scopus (2) Google Scholar]. Health equity is defined as the attainment of the highest level of health for all people, where everyone has a fair and just opportunity to attain their optimal health regardless of race, ethnicity, disability, sexual orientation, gender identity, socioeconomic status, geography, preferred language, and other factors that affect access to care and health outcomes. [3Centers for Medicare and Medicaid ServicesHealth equity.https://www.cms.gov/pillar/health-equity#:∼:text=Health%20equity%20means%20the%20attainment,language%2C%20or%20other%20factors%20thatDate accessed: December 16, 2022Google Scholar] The American Cancer Society defines cancer health equity as everyone having a fair and just opportunity to prevent, find (screen), treat, and survive cancer. Expressing support for such aspirations in cancer care delivery is a relatively easy task for most individuals and organizations, yet attempts at explicating the pathway(s) leading to the achievement of health equity and implementing the necessary changes to the cancer care delivery system are proving to be much more challenging. In particular, the cost of cancer care and the financial hardship it can impose on households highlight a substantial barrier to everyone having fair and just opportunities for good health outcomes as they try to prevent cancer or as they navigate from screening to diagnosis through to survivorship. Medical expenditures for cancer care are steadily rising in the United States [4Mariotto A.B. Yabroff K.R. Shao Y. Feuer E.J. Brown M.L. Projections of the cost of cancer care in the United States: 2010-2020.J Natl Cancer Inst. 2011; 103: 117-128Crossref PubMed Scopus (1845) Google Scholar]. The costs for cancer care are expected to increase by more than 30% from 2015 to 2030, with a total cost of approximately $246 billion [5Mariotto A.B. Enewold L. Zhao J. Zeruto C.A. Yabroff K.R. Medical care costs associated with cancer survivorship in the United States.Cancer Epidemiol Biomarkers Prev. 2020; 29: 1304-1312Crossref PubMed Scopus (131) Google Scholar]. With the increase in treatment costs and the rise in cost sharing [6Richard P. Walker R. Alexandre P. The burden of out of pocket costs and medical debt faced by households with chronic health conditions in the United States.PLoS ONE. 2018; 13e0199598Crossref Scopus (21) Google Scholar], the financial resources required for a family to manage out-of-pocket expenses and navigate the cancer care delivery system are substantial [7Wagner L. Lacey M.D. The hidden costs of cancer care: an overview with implications and referral resources for oncology nurses.Clin J Oncol Nurs. 2004; 8: 279-287Crossref PubMed Google Scholar], with few families adequately financially prepared to manage such costs. Specifically, higher out-of-pockets costs for baseline mammographic screening reduce the probability of following up for screening in the subsequent 12 to 24 months [8Tran L. Chetlen A.L. Leslie D.L. Segel J.E. Effect of out-of-pocket costs on subsequent mammography screening.J Am Coll Radiol. 2022; 19: 24-34Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar]. In addition, when families are confronted with a cancer diagnosis and this diagnosis affects patients’ or their spouses’ or partners’ ability to work, household income is reduced, and there is the potential for financial hardship. Because of lower levels of household income and wealth, racial/ethnic minority households are at increased risk for such hardship, as they are less likely to have the financial resources to buffer reductions to household income or to have additional financial resources to draw upon when income from work is reduced or eliminated [9Jagsi R. Pottow J.A.E. Griffith K.A. et al.Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries.J Clin Oncol. 2014; 32: 1269-1276Crossref PubMed Scopus (181) Google Scholar]. Patients may then delay care, which increases the likelihood of presenting with later stage disease, thus requiring more intense (and more expensive) treatments and increasing the potential for financial toxicity. Borrowing frameworks from the health disparities literature [10Skalická V. Van Lenthe F. Bambra C. Krokstad S. Mackenbach J. Material, psychosocial, behavioural and biomedical factors in the explanation of relative socio-economic inequalities in mortality: evidence from the HUNT study.Int J Epidemiol. 2009; 38: 1272-1284Crossref PubMed Scopus (100) Google Scholar], Tucker-Seeley and Yabroff [11Tucker-Seeley R.D. Yabroff K.R. Minimizing the “financial toxicity” associated with cancer care: advancing the research agenda.J Natl Cancer Inst. 2015; 108: djv410Crossref PubMed Scopus (0) Google Scholar] suggested that households navigating cancer care may experience financial hardship in three domains: a material domain that describes the lack of or reduction in financial resources to cover out-of-pocket medical expenses, a psychological domain that describes the psychological distress accompanying the lack of or reduction in household financial resources, and a behavioral domain that describes the coping behaviors a household adopts to manage cancer care costs. It is the combination of the material, psychological, and behavioral domains of financial hardship that captures the multidimensionality of the financial toxicity of cancer care experienced by patients and their families. Many households report financial hardship as they are navigating the cancer care delivery system; recent research from the Centers for Disease Control and Prevention, the American Cancer Society, and the National Cancer Institute using data from the 2011-2016 Medical Expenditure Panel Survey showed that material financial hardship was experienced by 25.3% of cancer survivors, and psychological financial hardship was experienced by 34.3% of cancer survivors [12Ekwueme D.U. Zhao J. Rim S.H. et al.Annual out-of-pocket expenditures and financial hardship among cancer survivors aged 18-64 years—United States, 2011-2016.MMWR Morbid Mortal Wkly Rep. 2019; 68: 494Crossref PubMed Scopus (0) Google Scholar]. Research using the same data source suggested that approximately 26% of cancer survivors experienced behavioral financial hardship [13Han X. Zhao J. Zheng Z. de Moor J.S. Virgo K.S. Yabroff K.R. Medical financial hardship intensity and financial sacrifice associated with cancer in the United States.Cancer Epidemiol Biomarkers Prev. 2020; 29: 308-317Crossref PubMed Scopus (46) Google Scholar]. As cancer care delivery moves from aligning on the conceptualization and measurement of financial hardship and financial toxicity to developing and implementing interventions to alleviate this hardship for patients and their families [14Offodile A.C. Gallagher K. Angove R. Tucker-Seeley R.D. Balch A. Shankaran V. Financial navigation in cancer care delivery: state of the evidence, opportunities for research, and future directions.J Clin Oncol. 2022; 40: 2291-2294Crossref PubMed Scopus (0) Google Scholar], several processes must be in place to ensure the full integration of this type of social care into health care delivery. For example, electronic health records must be capable of documenting and tracking patients as they navigate the health care (primary and specialty care) and social care delivery settings. More specifically, processes must be developed for screening patients for financial hardship in the cancer care delivery system and then for navigating and connecting them to social care, and then capturing whether the financial hardship was actually addressed when they return to the cancer care delivery system. These processes must be multidisciplinary and include all patient interactions with the health care delivery system (including imaging). In addition, the community organizations that deliver the financial hardship interventions must be well resourced (fiscal and human) to receive the additional referrals from the cancer care delivery system. Last, to ensure that this integration happens equitably, it is important to recognize that the disproportionate distribution of socioeconomic resources such as “knowledge, prestige, power, and beneficial social connections” [15Phelan J.C. Link B.G. Tehranifar P. Social conditions as fundamental causes of health inequalities: theory, evidence, and policy implications.J Health Soc Behav. 2010; 51: S28-S40Crossref PubMed Scopus (1299) Google Scholar] across and within demographic groups can influence uptake of interventions meant to alleviate financial hardship. Patients and their families also report varying levels of financial hardship before entering the cancer care delivery system, with racial/ethnic minorities, those of low socioeconomic status, and younger patients more likely to report such hardship [16Pisu M. Kenzik K.M. Oster R.A. et al.Economic hardship of minority and non-minority cancer survivors 1 year after diagnosis: another long-term effect of cancer?.Cancer. 2015; 121: 1257-1264Crossref PubMed Scopus (67) Google Scholar]. Therefore, the notion of treating all patients the same (equality) must instead be replaced by the approach of treating patients where they are (equity); as clearly articulated by Braveman et al [17Braveman P. Arkin E. Orleans T. Proctor D. Acker J. Plough A. What is health equity?.Behav Sci Policy. 2017; 4: 1-14Crossref Scopus (22) Google Scholar], “those with the greatest needs and fewest resources require more, not equal, effort and resources to equalize opportunities.” Financial hardship and financial toxicity present substantial barriers to patients’ having a fair and just opportunity to achieve the best health outcomes possible as they try to prevent, find, treat, and survive cancer, as well as implementation challenges to the cancer care delivery system. Such challenges are also present for cancer screening, as research suggests that those experiencing financial hardship are less likely to get prostate and colorectal cancer screenings [18Herriges M.J. Shenhav-Goldberg R. Peck J.I. et al.Financial toxicity and its association with prostate and colon cancer screening.J Natl Compr Canc Netw. 2022; 20: 981-988Crossref PubMed Scopus (1) Google Scholar]. Thus, changes to care delivery will need to be put in place to screen patients for financial hardship before entering cancer care; patients will need to be navigated to the appropriate resources to address the material, psychological, and behavioral components of financial hardship (preferably multiple times as they navigate care); and patients must also be connected to those resources and followed up to ensure that the resources addressed their financial hardship. Similar to efforts for the integration of social care generally into health care delivery, implementation will require effective interprofessional teams, where each team member understands their role in addressing the financial toxicity of cancer care for patients and their families. The implementation of these processes also provides an opportunity to articulate the characteristics of an equitable cancer care delivery system. As these characteristics are further articulated in the research literature, it will also be necessary to explicate the changes to our public health, social service, and overall health care delivery systems (primary and specialty care) required to achieve equity in cancer care. As such, two critical characteristics of an equitable cancer care delivery system must be that (1) navigating the cancer care delivery system does not cause financial ruin or substantial downward social mobility, and (2) the risk of financial hardship is not patterned by race/ethnicity (or other sociodemographic characteristics). The implementation of these two characteristics will be a critical step in moving racial/ethnic and socioeconomic disparities in cancer care from tolerable to unacceptable.