The Cost of Cancer: Financial Burdens of Treatment
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Financial stress, also called financial toxicity, is a devastating but increasingly common side effect of cancer care that impacts individuals living with cancer and those coping with the long-term treatment effects. But what are some ways to deal with the financial toll? Join Dr. Bridgette Thom, from Memorial Sloan Kettering’s Department of Nursing, as she discusses the burdens patients face during cancer treatment and beyond, as well as ways to navigate the associated costs, including available resources.
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The Cost of Cancer: Financial Burdens of Treatment
- 1. The Cost of Cancer: Financial Burdens of Treatment Bridgette Thom, PhD November 2, 2023
- 2. Overview • Defining and contextualizing financial toxicity • Understanding solutions across the healthcare system • Focus on medical debt and managing medical bills • Resources
- 3. “The problems a patient has related to the cost of medical care” –National Cancer Institute
- 4. Why Does Financial Toxicity Matter? Decreased: • Quality of life • Satisfaction with care • Adherence to treatment Increased: • Personal/family burden • Risk of bankruptcy • Psychosocial distress
- 6. ASCO, 2018
- 8. The affordability crisis is caused by all sectors of healthcare Providers & Health Systems Payers/Insurance Pharmaceutical Industry Biotech
- 9. Considering the Systems Bronfenbrenner, 1979; Bronfenbrenner & Morris, 2007; Yabroff et al., 2018; Danhauer et al., 2021
- 12. Education 12 • Content • Financial literacy • Insurance literacy • Health cost literacy • Financial counseling • Leveraging existing resources
- 13. Education 13 (Hamel et al., Trials, 2021)
- 14. Navigation • Content covered • General financial navigation • Insurance-specific navigation • Methods of delivery • App-based/web-based • Phone • In-person
- 15. Navigation 15
- 16. Assistance • Co-pay assistance • Direct cash transfers • Grant mechanisms • Support for essential needs • Mental health support
- 17. Assistance 17
- 18. Providers For Provider • Education • General • Engaging in cost-related conversations • Practice Changes • Advocacy For Patient • Conversations • Social History • Employment • Costs/alternative • Anticipatory Guidance • Prior authorization • Common secondary chronic conditions • Effects on lifestyle that may impact patient financial viability
- 19. Cost Conversations • 50% cancer patients desire a cost conversation with oncologist • Only 19% actually talked to their doctor • Only 28% talked to ANY health care professional Zafar, Chino, et al AJMC, 2015 Kelly, JOP, 2015 53% 25% 19% 13% 6% Referred to financial assistance MD appealed to insurance Switched to less expensive meds Changed tests or decreased frequency Decreased frequency of MD visits
- 20. Navigators • Needs assessments • Medical, Non-medical • Linkages • Insurance enrollment • Community Resources • Support Groups • Financial Planning Tools • Financial Assistance • Co-pay assistance • Reduced Cost Care • Patient Education
- 21. Hospitals • Screening • Tools • Workflows • Clinical-Financial Care Pathways • Opportunities for Collaboration • Prior Authorization Workflows • Telehealth • Billing Practices • Flexible Payment Plans • Negotiation on Prices • Price Transparency • Financial Assistance Programs • Essential Needs Assistance • Food Security • Parking, Transportation • Dependent Care
- 22. Community • Personal networks of support • Advocacy organizations • Crowdfunding
- 23. Policy • Insurance • Coverage Mandates • Rethinking Cost Sharing • Network Adequacy • Payment Models • Medicaid Expansion • State/Federal Assistance Expansion • Prescription Drug • Essential Needs
- 24. Medical Debt & Managing Bills • Medical debt can affect almost anyone • Certain populations at higher risk • Results primarily from cost-sharing
- 25. Medical Debt Consequences • Damaged credit • General economic instability • Depleted assets • Bankruptcy • Housing instability • Skipped, delayed care • Access concerns • Emotional distress
- 26. Hospitals • Communication • Insurance verification • Patient education • Billing • Prompt • Accurate • Prices • Negotiation • Transparency • Financial Assistance • Flexible Payment Plans • Financial Counseling • Discounted/Charity Care
- 27. Navigators • Education • Patient rights • Financial literacy/healthcare cost-related literacy • Hospital policies • Facilitate Communication • Insurance Selection • Connection to Resources • Financial • Emotional Support
- 28. Providers • Communication • Awareness of referral options • Attention to psychosocial impact • Advocacy
- 29. Patient/Caregiver Prevention • Understand cost-sharing obligations • Request itemized bills • Engage with cost estimators • Track expenses, bills, records • Basic budgeting • Negotiate payment plans, discounts • Seek billing advocates • Request commitments in writing Management • Do not ignore • Financial counseling/advisors • Debt consolidation • Balance transfers/0% interest/medical credit cards • Payment plans • Monitor credit reports • Advocacy • Request written confirmation of debt • Send no-contact letter • Verbally demand no contact
- 30. Resources • Professional Associations • Peer-reviewed publications and focused journals • Journal of Oncology Navigation and Survivorship • Conquer Patient Guide • Web-Based (non-exhaustive) • American Cancer Society • Triage Cancer • Family Reach • Association of Community Cancer Centers
- 31. 31 Resources
- 32. Summary 32 • In the absence of substantive structural changes to the healthcare, economic, and political systems, interventions will be needed at every level with which patients interact • While there are many opportunities for patients to seek
Editor's Notes
- The term “financial toxicity” was coined to reference financial hardship as being akin to biologic toxicity of cancer treatment. We think of it, broadly, as the economic or financial distress related to cancer treatment. In the literature and clinically, the term is often used interchangeably with “financial hardship” or “financial burden” or “financial stress”—or other similar terms. Depending on the source, there may be nuanced differences among terms. Financial toxicity has: Objective components Out-of-pocket dollars spent, % of income spent on healthcare, lost wages Subjective components Intangible impacts on psychosocial well-being and quality of life Other frameworks have described financial toxicity—or financial hardship—as having material, psychological, and behavioral components.
- In 2018, ASCO’s national cancer opinion survey showed us that just as many American’s are worried about cancer’s financial impact as are about dying of cancer.
- How are these affecting our patients. Two studies published out of Fred Hutch/UW in 2013 and 2016 really demonstrate the harms associated with the affordability crisis and were a call to action for those of us interested in this space. The first showed patients with cancer are 2.5 times more likely than the general population to declare personal bankruptcy. And the second showed that cancer patients who file for bankruptcy have a 2-fold higher rate of mortality. Two stats that are pretty hard to ignore and that given the information just presented make a lot of sense.
- Its important to start this talk by acknowledging that all four sectors of healthcare are contributing to the problem. Provider/health systems, pharma, payers/insurance companies, and biotech. Its important to understand how each silo are contributing and how each can play a role in mitigating harm. In this talk I’ll focus on how pharmaceutical companies and payers have been contributing to the problem and will also focus on research and programmatic activities that we are conducting at MSK that are attempting to mitigate this harm.
- Ecological systems theory: a complex system of relationships affected by multiple levels of the surrounding environment, from immediate settings of family and school to broad cultural values, laws, and customs To study individuals, we must look not only at the patient and her immediate environment, but also at the interaction of the larger environment as well. Urie Bronfenbrenner's bioecological model is divided into four main components: processes (interactions with the objects or people), person, context (home, school, peer group, community) and time (length of a process or cultural/ historical changes in time).
- As the concept of navigation has come to be a panacea for health services research, we are seeing an emergence of research to test mechanisms for financial navigation, both general and specific to insurance
- Manufacturer co-pay programs have been around for some time, and they continue to be instrumental in helping patients afford medication, but we are now seeing an emergence of patient-center financial support that provides assistance to help them meet their essential and other non-medical costs, that offers grant support to self-identified areas of need, and gives unrestricted direct cash transfers.
- “structured, comprehensive assessment of patients’ risk factors for FT and guiding patients to resources and referrals to support their financial needs across cancer care” Smith et al, 2021 Banegas et al, 2019: The FN pilot was developed to enhance patient navigators’ ability to address patients’ needs and concerns surrounding medical care costs. This pilot entailed a 2-pronged approach: 1) providing enhanced training to 1 patient navigator (to become the FN), including 40 hours of specialized training in financial assistance resources to assist with medical care costs, cost estimation tools, health insurance benefits, and meetings with operational and clinical staff and leadership; and 2) building new capabilities in the electronic health record (EHR) to enable health care staff to make referrals to the FN. After completing this training, the FN provided services at a single KPNW medical campus, which became the pilot intervention clinic. The FN pilot was conducted in 3 clinical departments (ie, Primary Care, Rheumatology, Ophthalmology) located in 2 separate medical offices (hereafter referred to as the intervention clinic and comparison clinic). The intervention and comparison clinics were selected because they had all 3 clinical departments operating in the same medical campus. This quality improvement intervention was deemed exempt from the need for institutional review board approval. Yezefski et al 2018: Of 11,186 new patients with cancer seen across the 4 participating hospitals between 2012 and 2016, 3572 (32%) qualified for financial assistance. They obtained $39 million in total financial assistance, averaging $3.5 million per year in the 11 years under observation. Patients saved an average of $33,265 annually on medication, $12,256 through enrollment in insurance plans, $35,294 with premium assistance, and $3076 with co-pay assistance. The 4 hospitals were able to avoid write-offs and save on charity care by an average of $2.1 million per year. Shankaran et al 2018: Methods: Patients with cancer received a financial education course followed by monthly contact with a CENTS financial counselor and a PAF case manager for 6 months. We measured program adherence, self-reported financial burden and anxiety, program satisfaction, and type of assistance provided. Results: Thirty-four patients (median age, 60.5 years) were consented (85% white and 50% commercially insured). Debt, income declines, and loans were reported by 55%, 55%, and 30% of patients, respectively. CENTS counselors assisted most often with budgeting, retirement planning, and medical bill questions. PAF case managers assisted with applications for appropriate insurance coverage, cost of living issues (eg, housing, transportation), and disability applications. High financial burden and anxiety about costs (4 or 5 on a Likert scale) were reported at baseline by 37% and 47% of patients, respectively. Anxiety about costs decreased over time in 33% of patients, whereas self-reported financial burden did not substantially change. Doherty et al 2023: Methods: Nine virtual focus groups were conducted with 45 oncology financial advocates. Focus group transcripts were analyzed using template-based thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR); two study team members coded each transcript and all six team members identified emergent themes. Results: Salient themes were identified across all five domains of the CFIR framework: (1) intervention characteristics: participants described challenges of adapting OFA to meet the needs of the medical system instead of needs of the patients; (2) outer setting: growing awareness of health and cancer disparities could bring more attention to and investment in OFA; (3) inner setting: programs are under-resourced to assist all at-risk patients, staffing, technology integration, and network/communication workflows are needed; (4) characteristics of individuals: advocates believe strongly in the effectiveness and would like to see their credibility enhanced with professional certification; (5) process: implementation strategies that target the engagement of leadership, key stakeholders, and patients to increase program reach are needed.
- Screening: Khera et al., 2020— 2018 National Comprehensive Cancer Network (NCCN) member institution survey, 76% reported routine screening,18% reported occasional screening, and 50% repeated screening for patient financial distress McLouth et al 2021— 2017 survey of 221 National Cancer Institute Community Oncology Research Program sites, 72% reported financial screening Beauchemin 2023 Collaboration: Raghavan D, Keith NA, Warden HR, et al. Levine Cancer Institute Financial Toxicity Tumor Board: a potential solution to an emerging problem.
- 137 million Americans have medical debt • 28% (38 million) have debt greater than $10,000 • As of 3/2020, 52% of debt in collections was medical in nature 137 million Americans have medical debt • 28% (38 million) have debt greater than $10,000 • As of 3/2020, 52% of debt in collections was medical in nature Rabin et al 2020: Analysis of nhis—although overall debt went down, Medical debt is greater for those with any type of high deductible (HD) insurance, and among those more vulnerable (lower income, minority, treatable chronic diseases). Medical debt with HD's increased deferred needed medical care 6 fold and is highest for those with more treatable chronic diseases. Yau et al 2023: 3 year review of medical records at Lurie Childrens: 6877 pts, 630 with unpaid balance: Although patients with insurance policies requiring higher out-of-pocket costs (ie, Blue Cross and other commercial insurance carriers) are generally characterized by higher household incomes, these patients were found to have higher unpaid account balances than patients with public insurance policies. This suggests that income alone is not predictive of unpaid medical debt and provides greater appreciation of lower income families who may make a more consistent effort in repaying their medical debt. Becker et al, 2022: This cross-sectional study of commercially insured adults linked to patient credit report outcomes shows an association between increasing burden of chronic disease and adverse financial outcomes. Waters et al, 2023: potentially higher rates among AYA SGM
- Literacy: Wiltshire et al, 2021: 8000 middle aged americans-- People with higher health insurance literacy reported lower medical debt. Type of insurance coverage did not influence medical debt. Those with annual deductibles and out-of-pocket health care costs were more likely to report having medical debt.