Background
The term financial toxicity acknowledges the harmful financial impact of cancer care on patient well-being, drawing an analogy to physical toxicities.1,2 Early research on financial toxicity was primarily descriptive but highlighted the detrimental effects it could have on patient quality of life and survival.3–14 This growing awareness led to a call for intervention rather than just continued description of the problem.15–17 The first interventions were primarily implemented at the patient and clinic levels through financial navigation programs, which have shown promising impacts on patient outcomes.18–21 However, it became increasingly apparent that more systemic changes would be needed, with the scope of financial toxicity issues not only including clinical personnel but also requiring specialized input from administrative (billing, coding, and insurance specialization) and supportive services (financial counseling, social work, and nurse navigation).
To address this broader need, the first Financial Toxicity Tumor Board (FTTB) was established at our institution in September 2019.22 The FTTB was conceived to function similarly to traditional, disease-focused multidisciplinary tumor boards, which have become the standard of care in oncologic disease management. It was designed to bring together stakeholders from all domains related to the financial toxicity of cancer care, including clinical, supportive, and administrative roles, who rarely come into routine contact for detailed discussions of cases that could not be solved by standard clinical processes. Each participant category was required to send at least one representative with full decision-making authority to each FTTB to ensure prompt problem resolution.23,24 The rationale, structure, and formation of the FTTB have been previously detailed.22 Since its inception, the FTTB has functioned continuously at our institution with monthly meetings, albeit with a brief pause during the early months of the COVID-19 pandemic, in accordance with most expert recommendations at the time.25,26 This real-world experience of running the FTTB has led to some changes in organization and a more codified structure than previously described for the pilot phases of this project. These changes are outlined in the following sections, with the hope of facilitating greater ease of adoption of this model by other institutions, allowing new FTTBs to function at a high level from their initiation with a greater chance of success.
Methods
FTTB Organization and Structure
As originally conceived and described, access to referral of cases to the FTTB was made intentionally broad. Extensive advertisement was performed throughout the organization, with posting of signage in clinics, education provided to patient-facing clinical and secretarial staff, and a central email provided for referral by patients, family members or caregivers, physicians, nurses, social workers, financial counselors, pharmacists, and frontline staff.22 This approach functioned primarily as intended at the outset of the meetings, and a wide variety of cases were explored. However, with increasing experience, several areas of potential bias became apparent. Of primary concern were multiple areas of selection bias, which worsened over time. The first area was in the self-selection bias of case submission. Because there were naturally some members of the cancer center who were more attuned and interested in financial disparities, most of the cases were submitted by these individuals. In particular, complex and specific areas of financial minutiae became more prevalent at the FTTB but were less applicable to the cancer patient population at large. Directly related to this issue was undercoverage bias, where certain populations of great need were not routinely discussed due to a lack of an involved champion in that domain. In 2021, 14 cases were presented to the full tumor board representing a fairly narrow range of concerns, including 4 cases related to out-of-network insurance, 3 related to “white bag” issues, and 3 related to specific medication denials, as well as individual cases related to funding for nutritional supplements, out-of-network providers, and out-of-pocket costs. These cases were presented by 11 different individuals representing Financial Navigation, Pharmacy, Administration, and Nutrition, with only 2 of the presenters new to presentation at the tumor board. Attendance at the FTTB was also a concern, declining to 35 to 40 individuals in the last 3 months of that year.
To address these issues, the FTTB leadership made the decision to switch to a disease-based approach. In this new process, each month the leadership of the upcoming section was contacted and asked to provide 2 to 3 cases for presentation by physicians from their group. A standardized template was introduced to streamline case preparation and maintain style consistency across presentations, facilitating discussion (Supplementary Table S1, available online in the supplementary materials). This process led to a broader variety of cases and clinical scenarios for discussion and problem resolution, as well as increased attendance. In the first full year of this process (2023), 26 individual cases were presented by 21 providers, including physicians, advanced practice providers, and medical oncology fellows. Notably, 14 of the 21 providers were presenting to the tumor board for the first time. Attendance has also improved, ranging from 60 to 90 participants at each meeting. However, site and section selection remain a fluid area of discussion and continues to evolve in best practices. For example, concerns arose regarding the underrepresentation of community-based sites in the disease-based approach. In response, a meeting was designated to only address cases from these sites, and outreach efforts increased to encourage submission in other months.
FTTB Follow-Up and Development of the Archetype System
Two major areas of need were identified from the outset of the meeting: ensuring consistent follow-up and developing solutions for the problems presented. This was first accomplished through an ad hoc system, where workgroups were formed during meetings, bringing together key stakeholders to address systemic issues. Despite some successes with this approach, it became clear that a more formalized pathway was needed to ensure consistent follow-up. To address this, an internal computerized case-tracking tool was developed. This system records patient identification, case details, and follow-up plans, which are updated monthly at a meeting of key stakeholders following that month’s FTTB.
Additionally, a review of 5 years of FTTB meetings allowed for the identification of 3 key case patterns, leading to the development of process maps for each case archetype. A rigorous review of previous cases was undertaken by key stakeholders of the FTTB, including representatives from clinical teams, administrative teams (including patient billing, patient assistance, and cancer center leadership), and supportive care teams (including nurse navigation, social work, and financial navigation) to identify common themes. Process mapping was also undertaken to outline available assistance within the cancer center and to identify designated point persons for specific processes and determine common workflows. Ultimately 3 archetypes were differentiated by the level of follow-up needed: Immediate Assistance Required, System-Level Issue Identified, and Policy/Legislative Issue Identified. Notably, these categories were not intended to be mutually exclusive, as many cases were expected to fall into multiple categories. Instead, the archetypes were intended to improve process consistency within the FTTB, and in turn create a consistent and reproducible model that could be more easily adopted by other groups (Figure 1). Each archetype, along with representative clinical examples, is discussed in greater detail in the following sections.
Financial Toxicity Tumor Board case archetypes.
Abbreviations: ACA, Affordable Care Act; AML, acute myeloid leukemia; APP, advanced practice provider; FTTB, Financial Toxicity Tumor Board; NGS, next-generation sequencing.
With permission from Levine Cancer Institute.
Citation: Journal of the National Comprehensive Cancer Network 23, 5; 10.6004/jnccn.2025.7010
Immediate Assistance Required
Cases classified as Immediate Assistance Required were those that required resolution within the meeting time due to the urgency of need. Typical cases of this type include a newly diagnosed patient experiencing a sudden loss of income and health insurance; a patient receiving excessive copay bills due to previously unrecognized underinsurance; and a patient encountering housing and transportation instability resulting from treatment costs. Key stakeholders would be identified both before and during the meeting. By the conclusion of the case discussion, a formal plan would be established, with an appropriate FTTB member taking leadership in its implementation. A follow-up meeting with the key stakeholders would be scheduled within 1 week of the FTTB meeting to ensure issue resolution, and a summary email would be sent to the presenting provider to close the communication loop.
System-Level Issues
Cases classified as System-Level Issues were those that reflected potential deficits or challenges embedded within the operational teams of the health care system (eg, finance, billing, patient support). These were addressed differently from individual patient cases because they typically required systemic changes to achieve resolution and avoid repetition for other patients. Examples include billing issues associated with next-generation gene sequencing before standard operating procedures were fully in place, treatment denials from payers that required specific phrasing in clinical notes for approval of certain novel agents (eg, rituximab), and the need for dedicated personnel to address the complexities of billing associated with the Veterans Health Administration system. As with urgent cases, key stakeholders would be identified before and during the meeting. However, in these cases, stakeholders would also assent to joining a workgroup that would then meet on a regular basis until the system challenge was satisfactorily resolved. Updates would then be reported back to the FTTB and the presenting provider.
Policy/Legislative Issues
Cases classified as Policy/Legislative Issues required the identification of another set of stakeholders, including legislative targets at both state and national levels, as well as relevant advocacy groups, prior to the meeting. In general, these types of cases also required the formation of a workgroup, though with less expectation of immediate results. This workgroup worked with our system’s legislative team to lobby for policy changes, while simultaneously exploring local solutions for affected patients. For example, in a case where a patient required enteral feeding but lacked coverage due to Medicaid regulations, the workgroup devised a local solution for the individual patient through foundational support while also engaging with local and national policymakers to change policy for this vulnerable population.
As previously discussed, the current iteration of the FTTB began in January 2023 with disease group–focused presentations and use of the archetypes. Since then, 21 tumor boards have been conducted using this model, with a total of 50 cases presented—26 of which were considered to fit multiple archetypes. Among the 50 cases, 43 were classified as Immediate Access Required, 27 involved System Level Issues, and 2 were considered Policy/Legislative Issues. Success, defined by both the case presenter and FTTB leadership based on resolution of the primary issues brought to the tumor board, has also been tracked since these changes were implemented. Of the 50 cases presented, 47 (94%) were deemed fully resolved through FTTB actions. Full details on each case and its resolution can be found in Supplementary Table S2.
Evolution of the Patient Assistance Program
The formation of the Patient Assistance Program (PAP) arm of the FTTB has been previously described in detail.22 Briefly, the PAP was developed as a joint initiative between the Levine Cancer Institute and the Department of Pharmacy with the goal of reducing or eliminating out-of-pocket costs for cancer therapeutics for all eligible patients. To achieve this, a systematic approach was established to evaluate each time a new treatment regimen was implemented for potential enrollment in free drug programs or copay assistance. This included the recruitment of specific pharmacy technicians who were assigned to specific clinical locations and charged with reviewing all new treatment orders for potential assistance. This same team also handled copay assistance applications for any patients referred to the PAP team. Data have been carefully tracked and logged for both patients served and the value of assistance received, in terms of both free drug costs and amount of copay assistance. The data for each technician are carefully logged into a shared system both to gauge effectiveness for the system and to look for trends in patients served and need for increasing the services in certain areas. This program has continued to expand in scope, demonstrating consistent growth year over year in both the number of patients assisted and the value of assistance received (Table 1). Notably, the service was expanded to the Atrium Health Wake Forest Baptist system in 2022, significantly increasing access to financial assistance for the geographic region. In the 5 years of operation, the PAP has provided copay assistance to 9,321 patients, totalling $10,316,695 in financial support. Additionally, 16,495 patients have received free drug assistance, amounting to $392,895,101 in total savings (Table 1).
Patient Assistance Program Impact
| Year | Number of Patients Receiving Copay Assistance | Copay Assistance ($USD) | Number of Patients Receiving Free Medications | Patient Credits for Medications ($USD) |
|---|---|---|---|---|
| 2019 | 1,236 | $1,465,061 | 583 | $55,436,805 |
| 2020 | 1,000 | $1,396,090 | 749 | $60,732,415 |
| 2021 | 1,528 | $1,402,206 | 4,202 | $58,068,142 |
| 2022 | 2,572 | $2,718,237.20 | 5,684 | $102,268,703.30 |
| 2023 | 2,985 | $3,335,100.30 | 5,187 | $116,389,036.12 |
Discussion
In the decade since financial toxicity was first described, numerous descriptive studies have been completed to define the problem, yet real progress in resolving it has been slow. Most efforts have focused on addressing the issues at the individual or patient level. A recent survey of NCCN Member Institutions found that 76% of centers routinely screened for financial distress, primarily through social worker assessments (94%), with 56% screening patients multiple times. However, interventions following this screening were completely institution-specific, with most efforts focused on traditional concerns, such as drug costs, meal or gas vouchers, and payment plans.27 Of primary focus is the concept of financial navigation, in which specifically trained financial counselors engage with patients and caregivers on a one-on-one basis to tailor financial assistance and planning. Early pilot work by Shankaran et al18 has demonstrated high patient satisfaction with this type of process, and the impact of widespread implementation is currently being explored in cooperative group trial (ClinicalTrials.gov identifier: NCT04960787).
As a large, multisite academic hybrid comprehensive cancer center with extensive resources devoted to patient support, nurse navigation, social work, and financial counseling, we implemented all of these traditional efforts to address financial distress, but also realized that there were definitive limits to this approach. Thus, the FTTB was created to allow for identification, detailed discussion, and resolution of commonly occurring problems as well as deeply rooted systemic issues to effect change.
The past 5 years of continuous operation of the FTTB have been illuminating in terms of both best practices and impact. One major question that was present from the outset was how to ensure sustained enthusiasm and participation among the varied stakeholders represented. As noted earlier, after approximately 2 years of continuous operation, the focus of the meeting had skewed, with more esoteric administrative or clinical concerns leading to decreased participant engagement and overall attendance. Ultimately, the switch to a disease-based system, combined with the standardization of responses using the archetype framework, has significantly improved this issue over the past 2 years for multiple reasons. First, soliciting cases from all areas of the cancer center has increased case variation and enabled identification of systemic issues not previously considered. Second, this approach has allowed for a greater diversity of providers and participants to the tumor board, with more than half of the presenters in the past year being new to presentation.
The impact of the tumor board has also seemed to improve following these structural changes. As noted, 50 cases have been presented since implementation, with 94% resulting in immediate solutions for the individual patient being presented. Additionally, the PAP program has successfully provided immediate copay and medication assistance, addressing a major driver of financial difficulties stemming from variability in payer coverage.28–32 These 2 arms of the FTTB are complementary and allow for complete coverage of financial issues at the system level. The PAP program manages all routine and expected costs, whereas the tumor board facilitates discussions on more complex and systemic issues. As discussed earlier, we continue to work on increasing feedback to stakeholders at all levels of this success, which will hopefully continue to drive engagement with the process.
We have experienced definite challenges over the past 5 years of operation. As detailed earlier, case selection was an obvious issue, though it seems to have been somewhat rectified. A larger and more fundamental issue, however, is the identification of financial toxicity cases. The FTTB as an entity relies on issues being identified at the patient level, which can then be elevated to the board. Ideally, this would be achieved through system-level screening initiatives, but current research tools such as the COST measure are lengthy and likely not implementable in a busy clinical environment with multiple competing priorities.12,33 Thus, in line with current trends in the field, we are investigating continuous screening approaches that may enable earlier identification of at-risk patients, similar to published models.34 Ultimately, the FTTB is a reactive body, focused on preventing future issues by addressing problematic cases that have already occurred. The hope is that by increasing screening in this vulnerable population, we can both identify new issues that need attention and intervene earlier in their course.
Conclusions
Data collected over the past 5 years suggest that this financial toxicity–focused tumor board model offers substantial value and can be easily replicable at most cancer centers. The unprecedented out-of-pocket cost savings for patients justify the need for others to explore this approach, especially given that the underlying framework can easily be applied. It is our hope that the publication of our methods and results will assist other centers in replicating this work, and ultimately expand the availability of real solutions for one of the most rapidly emerging toxicities in cancer care.
References
- 1.↑
Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist 2013;18:381–390.
- 2.↑
Zafar SY, Peppercorn J. Reflections on the financial toxicity of cancer: 10 years later. Oncologist 2023;28:654–656.
- 3.↑
Ramsey SD, Bansal A, Fedorenko CR, et al. Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol 2016;34:980–986.
- 4.↑
Knight TG, Deal AM, Dusetzina SB, et al. Financial toxicity in adults with cancer: adverse outcomes and noncompliance. J Oncol Pract. Published online October 24, 2018. doi:10.1200/JOP.18.00120
- 5.↑
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;68:153–165.
- 6.↑
Lentz R, Benson AB, Kircher S. Financial toxicity in cancer care: prevalence, causes, consequences, and reduction strategies. J Surg Oncol 2019;120:85–92.
- 7.↑
Chino F, Zafar SY. Financial toxicity and equitable access to clinical trials. Am Soc Clin Oncol Educ Book 2019;39:11–18.
- 8.↑
Buzaglo JS, Miller MF, Karten C, et al. Multiple myeloma patient experience with financial toxicity: findings from the Cancer Experience Registry. Blood 2015;126:874.
- 9.↑
Knight TG, Robinson M, Grunwald MR, et al. Patient reported financial toxicity in acute leukemia. Blood 2018;132(Suppl 1):4796. Abstract 902.
- 10.↑
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.
- 11.↑
Bestvina CM, Zullig LL, Yousuf Zafar S. The implications of out-of-pocket cost of cancer treatment in the USA: a critical appraisal of the literature. Future Oncol 2014;10:2189–2199.
- 12.↑
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;120:3245–3253.
- 13.↑
Gordon LG, Merollini KM, Lowe A, et al. A systematic review of financial toxicity among cancer survivors: we can’t pay the co-pay. Patient 2017;10:295–309.
- 14.↑
Gilligan AM, Alberts DS, Roe DJ, et al. Death or debt? National estimates of financial toxicity in persons with newly-diagnosed cancer. Am J Med 2018;131:1187–1199.e5.
- 15.↑
Zafar SY. Financial toxicity of cancer care: it’s time to intervene. J Natl Cancer Inst 2016;108:djv370.
- 16.↑
Knight TG. Interventions for financial toxicity: more crucial than ever in the time of COVID-19. J Natl Compr Canc Netw 2020;18:915–916.
- 17.↑
Smith GL, Banegas MP, Acquati C, et al. Navigating financial toxicity in patients with cancer: a multidisciplinary management approach. CA Cancer J Clin 2022;72:437–453.
- 18.↑
Shankaran V, Leahy T, Steelquist J, et al. Pilot feasibility study of an oncology financial navigation program. J Oncol Pract 2018;14:e122–129.
- 19.↑
Knight TG, Aguiar M, Robinson M, et al. Financial toxicity intervention improves outcomes in patients with hematologic malignancy. JCO Oncol Pract 2022;18:e1494–1504.
- 20.↑
Thom B, Sokolowski S, Abu-Rustum NR, et al. Financial toxicity order set: implementing a simple intervention to better connect patients with resources. JCO Oncol Pract 2023;19:662–668.
- 21.↑
Wheeler SB, Biddell CB, Manning ML, et al. Lessening the Impact of Financial Toxicity (LIFT): a protocol for a multi-site, single-arm trial examining the effect of financial navigation on financial toxicity in adult patients with cancer in rural and non-rural settings. Trials 2022;23:839.
- 22.↑
Raghavan D, Keith NA, Warden HR, et al. Levine Cancer Institute Financial Toxicity Tumor Board: a potential solution to an emerging problem. JCO Oncol Pract 2021;17:e1433–1439.
- 23.↑
Taylor C, Munro AJ, Glynne-Jones R, et al. Multidisciplinary team working in cancer: what is the evidence? BMJ 2010;340:c951.
- 24.↑
Specchia ML, Frisicale EM, Carini E, et al. The impact of tumor board on cancer care: evidence from an umbrella review. BMC Health Serv Res 2020;20:73.
- 25.↑
Stiles DF, Ruotolo BL, Kim H, et al. Managing human subjects research during a global pandemic at an academic center: lessons learned from COVID-19. Acad Med 2022;97:48–52.
- 26.↑
Sohrabi C, Mathew G, Franchi T, et al. Impact of the coronavirus (COVID-19) pandemic on scientific research and implications for clinical academic training – a review. Int J Surg 2021;86:57–63.
- 27.↑
Khera N, Sugalski J, Krause D, et al. Current practices for screening and management of financial distress at NCCN member institutions. J Natl Compr Canc Netw 2020;18:825–831.
- 28.↑
Dusetzina SB, Winn AN, Abel GA, et al. Cost sharing and adherence to tyrosine kinase inhibitors for patients with chronic myeloid leukemia. J Clin Oncol 2014;32:306–311.
- 29.↑
Dusetzina SB, Basch E, Keating NL. For uninsured cancer patients, outpatient charges can be costly, putting treatments out of reach. Health Aff (Millwood) 2015;34:584–591.
- 30.↑
Jazowski SA, Dusetzina SB. Addressing cost-related nonadherence to oral anticancer medications through health policy reform: challenges and opportunities. Cancer 2020;126:3613–3616.
- 31.↑
Liu AW, Adesola C, Matthews Conti C, et al. Making sense of the dollars: evaluation of financial toxicity in patients of breast medicine receiving oral chemotherapy at Roswell Park. Presented at the 2023 ASCO Annual Meeting; June 2–6, 2023; Chicago, Illinois. Abstract e18519.
- 32.↑
Olszewski AJ, Zullo AR, Nering CR, et al. Use of charity financial assistance for novel oral anticancer agents. J Oncol Pract 2018;14:e221–228.
- 33.↑
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;123:476–484.
- 34.↑
Prasad RN, Patel TT, Keith SW, et al. Development of a financial toxicity screening tool for radiation oncology: a secondary analysis of a pilot prospective patient-reported outcomes study. Adv Radiat Oncol 2021;6:100782.
