Cancer diagnosis and treatment in working-age adults: Implications for employment, health insurance coverage, and financial hardship in the United States.

The rising costs of cancer care and subsequent medical financial hardship for cancer survivors and families are well documented in the United States. Less attention has been paid to employment disruptions and loss of household income after a cancer diagnosis and during treatment, potentially resulting in lasting financial hardship, particularly for working-age adults not yet age-eligible for Medicare coverage and their families. In this article, the authors use a composite patient case to illustrate the adverse consequences of cancer diagnosis and treatment for employment, health insurance coverage, household income, and other aspects of financial hardship. They summarize existing research and provide nationally representative estimates of multiple aspects of financial hardship and health insurance coverage, benefit design, and employee benefits, such as paid sick leave, among working-age adults with a history of cancer and compare them with estimates among working-age adults without a history of cancer from the most recently available years of the National Health Interview Survey (2019-2021). Then, the authors identify opportunities for addressing employment and health insurance coverage challenges at multiple levels, including federal, state, and local policies; employers; cancer care delivery organizations; and nonprofit organizations. These efforts, when informed by research to identify best practices, can potentially help mitigate the financial hardship associated with cancer.

Palliative Care as a Component of High-Value and Cost-Saving Care During Hospitalization for Metastatic Cancer.

PURPOSE: Randomized controlled trials have demonstrated that palliative care (PC) can improve quality of life and survival for outpatients with advanced cancer, but there are limited population-based data on the value of inpatient PC. We assessed PC as a component of high-value care among a nationally representative sample of inpatients with metastatic cancer and identified hospitalization characteristics significantly associated with high costs. METHODS: Hospitalizations of patients 18 years and older with a primary diagnosis of metastatic cancer from the National Inpatient Sample from 2010 to 2019 were analyzed. We used multivariable mixed-effects logistic regression to assess medical services, patient demographics, and hospital characteristics associated with higher charges billed to insurance and hospital costs. Generalized linear mixed-effects models were used to determine cost savings associated with provision of PC. RESULTS: Among 397,691 hospitalizations from 2010 to 2019, the median charge per admission increased by 24.9%, from $44,904 in US dollars (USD) to $56,098 USD, whereas the median hospital cost remained stable at $14,300 USD. Receipt of inpatient PC was associated with significantly lower charges (odds ratio [OR], 0.62 [95% CI, 0.61 to 0.64]; P < .001) and costs (OR, 0.59 [95% CI, 0.58 to 0.61]; P < .001). Factors associated with high charges were receipt of invasive medical ventilation (P < .001) or systemic therapy (P < .001), Hispanic patients (P < .001), young age (18-49 years, P < .001), and for-profit hospitals (P < .001). PC provision was associated with a $1,310 USD (-13.6%, P < .001) reduction in costs per hospitalization compared with no PC, independent of the receipt of invasive care and age. CONCLUSION: Inpatient PC is associated with reduced hospital costs for patients with metastatic cancer, irrespective of age and receipt of aggressive interventions. Integration of inpatient PC may de-escalate costs incurred through low-value inpatient interventions.

Financial Toxicity in Radiation Oncology: Impact for Our Patients and for Practicing Radiation Oncologists.

With rising costs of diagnosis, treatment, and survivorship, financial burdens on patients with cancer and negative effects from high costs, called financial toxicity (FT), are growing. Research suggests that FT may be experienced by more than half of working-age cancer survivors and a similar proportion may incur debt or avoid recommended prescription medications due to treatment costs. As FT can lead to worse physical, psychological, financial, and survival outcomes, there is a discrete need to identify research gaps around this issue that constrain the development and implementation of effective screening and innovative care delivery interventions. Prior research, including within a radiation oncology-specific context, has sought to identify the scope of FT among patients with cancer, develop assessment tools to evaluate patient risk, quantify financial sacrifices, and qualify care compromises that occur when cancer care is unaffordable. FT is a multifactorial problem and potential solutions should be pursued at all levels of the health care system (patient-provider, institutional, and systemic) with specific regard for patients' individual/local contexts. Solutions may include selecting alternative treatment schedules, discussing financial concerns with patients, providing financial navigation services, low-cost transportation options, and system-wide health policy shifts. This review summarizes existing FT research, describes tools developed to measure FT, and suggests areas for intervention and study to help improve FT and outcomes for radiation oncology patients.

Pharmacy Assistance Programs for Oral Anticancer Drugs: A Narrative Review.

Oral anticancer medications (OAMs) are high priced with a significant cost-sharing burden to patients, which can lead to catastrophic financial, psychosocial, and clinical repercussions. Cost-conscious prescribing and inclusion of low-cost alternatives can help mitigate this burden, but cost transparency at the point of prescribing remains a major barrier to doing so. Pharmacy assistance programs, including co-payment cards and patient assistance programs administered by manufacturers and foundation-based grants, remain an essential resource for patients facing prohibitive co-payments for OAMs. However, access to these programs is fraught with complexities, including lack of trained financial navigators, limited transparency on eligibility criteria, onerous documentation burdens, and limits in available funding. Despite these drawbacks and the potential for such programs to incentivize manufacturers to keep list prices high, assistance programs have been demonstrated to improve financial well-being for patients with cancer. The increasing development of integrated specialty pharmacies with dedicated, trained pharmacy staff can help improve and standardize access to such programs, but these services are disproportionately available to patients seen at tertiary care centers. Multistakeholder interventions are needed to mitigate the burden of cost sharing for OAMs, including increased clinician knowledge of financial resources and novel assistance mechanisms, investment of institutions in trained financial navigation services and centralized platforms to identify assistance programs, and policies to cap out-of-pocket spending and improve transparency of rates charged by pharmacy benefit managers to a health plan.

Access to Financial Assistance Programs and Their Impact on Overall Spending on Oral Anticancer Medications at an Integrated Specialty Pharmacy.

PURPOSE: Financial assistance (FA) programs are increasingly used to help patients afford oral anticancer medications (OAMs), but access to such programs and their impact on out-of-pocket (OOP) spending has not been well explored. This study aimed to (1) characterize the impact of receipt of FA on both OOP spending and likelihood of catastrophic spending on OAMs and (2) evaluate racial/ethnic disparities in access to FA programs. METHODS: Patients with a cancer diagnosis prescribed an OAM anytime between January 1, 2021, and December 31, 2021 were included in this retrospective, single-center study at an integrated specialty pharmacy affiliated with a tertiary academic cancer center. Fixed-effect regression models were used to characterize the impact of receipt of FA on overall spending and likelihood of catastrophic spending on OAMs, as well as explore the association of race/ethnicity with receipt of FA. RESULTS: Across 1,186 patients prescribed an OAM, 37% received FA. Receipt of FA was associated with lower annual spending on OAMs (ß = -$1,236 US dollars [USD; 95% CI, -$1,841 to -$658], P < .001) but not reduced risk of catastrophic spending (odds ratio [OR], 0.442 [95% CI, 0.755 to 3.199], P = .23). Non-White patients (OR, 0.60 [95% CI, 0.43 to 0.85], P = .004) and patients who spoke English as a second language (OR, 0.46 [95% CI, 0.23 to 0.90], P = .02) were less likely to receive FA compared with White and English-speaking patients, respectively. CONCLUSION: FA programs can mitigate high OOP spending but not for patients who spend at catastrophic levels. There are racial/ethnic and language disparities in access to such programs. Future studies should evaluate access to FA programs across diverse delivery settings.

Unwinding of Medicaid Continuous Enrollment Exposes Millions to Disrupted Care-"Be Kind, Rewind".

This Viewpoint discusses the causes and consequences of Medicaid unwinding and disenrollment and proposes solutions to minimize disenrollment and improve coverage uptake and health care access.

Financial hardship for patients with cancer and caregivers at end of life in the USA: narrative review.

BACKGROUND: Patients and their families face financial hardship during cancer treatment, which may intensify at end of life (EOL) due to increased symptoms and care needs. We undertook a narrative literature review to describe the current understanding of the causes, impacts and factors associated with financial hardship at EOL. We identify gaps in research, policy and clinical practice and propose steps to mitigate financial hardship for patients and caregivers at EOL. METHODS: We conducted a Medline search to identify US studies since 2000 that examined EOL financial hardship for patients with cancer and their caregivers. RESULTS: Twenty-seven adult and four paediatric studies met review criteria. Adults with cancer and their caregivers face significant financial hardship at EOL and in bereavement, especially due to employment changes and informal caregiving time costs. Financial hardship may be higher for younger caregivers and for patients who are uninsured, low income, rural, with high symptom burdens or with certain cancer types. The few paediatric studies showed high financial hardship and employment impact lasting well beyond a child's death. CONCLUSIONS: There is limited literature examining financial hardship at EOL in the USA, especially in paediatrics. Priorities for future research include longitudinal studies in diverse populations of patients with cancer and informal caregivers using standardised financial hardship measures. Policies to address financial hardship at EOL, especially with hospice care, should include insurance coverage for family caregiving and medical leave policies. There is need for increased financial hardship screening at EOL and in bereavement and a need for financial navigation interventions.

The Patient Experience of Prior Authorization for Cancer Care.

Importance: Prior authorization (PA) requires clinicians and patients to navigate a complex approval pathway. Resultant delays and denials can be particularly problematic for patients with cancer, who often need urgent treatment or symptom management. Objective: To investigate the patient perspective of PA for cancer-related care, including perceptions about the process, outcomes (including delays and denials), and patient administrative burden. Design, Setting, and Participants: This cross-sectional, anonymous survey used a convenience sample of patients with PA experience. Participants were recruited using social media and email lists of US-based cancer advocacy organizations from July 1 to October 6, 2022. Exposure: Prior authorization for any cancer-related service. Main Outcomes and Measures: Delays to care, outcome of PA, communication, and changes in anxiety (measured on a scale of 0-100, with 0 indicating no anxiety and higher scores indicating higher levels of anxiety) and trust. Results: Of 178 respondents (158 women [88%], 151 non-Hispanic White respondents [84%], 164 respondents [92%] <65 years), 112 (63%) reported that their cancer care was approved and given as recommended, and 39 (22%) did not receive recommended care due to delays or denials. Most respondents (123 [69%]) reported a PA-related delay in care; of those with delayed care, 90 (73%) reported a delay of 2 or more weeks. Most respondents (119 [67%]) had to personally become involved in the PA process; 35 (20%) spent 11 or more hours dealing with PA issues. Overall, the PA experience was rated as bad (70 [40%]) or horrible (55 of 174 [32%]); ratings were associated with the length of delay (ρ = 0.36; P < .001) and the time spent on PA (ρ = 0.42; P < .001). Self-reported PA-related anxiety was higher than usual anxiety (mean [SD] score, 74.7 [20.2] vs 37.5 [22.6]; P < .001) and was correlated with delay length (ρ = 0.16; P = .04), time spent on PA (ρ = 0.27; P < .001), and overall PA experience (ρ = 0.34; P < .001). After PA, 159 respondents (89%) trusted their insurance company less, and 148 respondents (83%) trusted the health care system less. Patient involvement in the PA process was associated with increased odds of distrusting their insurance company (ß = 6.0; 95% CI, 1.9-19.2) and the health care system (ß = 3.3; 95% CI, 1.4-8.1) and of having a negative experience (ß = 6.6; 95% CI, 3.1-14.3). Conclusions and Relevance: This survey-based cross-sectional study of the patient experience with PA highlights an adverse outcome of PA: 22% of patients did not receive the care recommended by their treatment team because of PA. Most respondents experienced a delay in recommended oncology care, and delays were associated with increased anxiety, a negative perception of the PA process, and patient administrative burden.

Using Real-World Data to Explore the Impact of One-Time Financial Grants Among Young Adult Cancer Survivors.

Young adult (YA) cancer survivors experience worse financial outcomes than older survivors. This analysis used data from Expect Miracles Foundation to explore the impact of one-time financial grants on financial well-being and access to health care. Among 300 respondents, the average grant was $1526 (standard deviation = $587; range $300-$3000). Respondents reported improved ability to pay expenses (t = 4.45, p < 0.001), increased financial decision-making power (t = 2.79, p = 0.06), decreased medical debt impact (t = 2.1, p = 0.04), improved transportation access (t = 2.38, p = 0.02), and fewer challenges in accessing care (t = 3.0, p = 0.005) 6 months after receiving a financial grant. Financial assistance offers YAs an opportunity to meet medical and nonmedical expenses.

State Public Assistance Spending and Survival Among Adults With Cancer.

Importance: Social determinants of health contribute to disparities in cancer outcomes. State public assistance spending, including Medicaid and cash assistance programs for socioeconomically disadvantaged individuals, may improve access to care; address barriers, such as food and housing insecurity; and lead to improved cancer outcomes for marginalized populations. Objective: To determine whether state-level public assistance spending is associated with overall survival (OS) among individuals with cancer, overall and by race and ethnicity. Design, Setting, and Participants: This cohort study included US adults aged at least 18 years with a new cancer diagnosis from 2007 to 2013, with follow-up through 2019. Data were obtained from the Surveillance, Epidemiology, and End Results program. Data were analyzed from November 18, 2021, to July 6, 2023. Exposure: Differential state-level public assistance spending. Main Outcome and Measure: The main outcome was 6-year OS. Analyses were adjusted for age, race, ethnicity, sex, metropolitan residence, county-level income, state fixed effects, state-level percentages of residents living in poverty and aged 65 years or older, cancer type, and cancer stage. Results: A total 2 035 977 individuals with cancer were identified and included in analysis, with 1 005 702 individuals (49.4%) aged 65 years or older and 1 026 309 (50.4%) male. By tertile of public assistance spending, 6-year OS was 55.9% for the lowest tertile, 55.9% for the middle tertile, and 56.6% for the highest tertile. In adjusted analyses, public assistance spending at the state-level was significantly associated with higher 6-year OS (0.09% [95% CI, 0.04%-0.13%] per $100 per capita; P < .001), particularly for non-Hispanic Black individuals (0.29% [95% CI, 0.07%-0.52%] per $100 per capita; P = .01) and non-Hispanic White individuals (0.12% [95% CI, 0.08%-0.16%] per $100 per capita; P < .001). In sensitivity analyses examining the roles of Medicaid spending and Medicaid expansion including additional years of data, non-Medicaid spending was associated with higher 3-year OS among non-Hispanic Black individuals (0.49% [95% CI, 0.26%-0.72%] per $100 per capita when accounting for Medicaid spending; 0.17% [95% CI, 0.02%-0.31%] per $100 per capita Medicaid expansion effects). Conclusions and Relevance: This cohort study found that state public assistance expenditures, including cash assistance programs and Medicaid, were associated with improved survival for individuals with cancer. State investment in public assistance programs may represent an important avenue to improve cancer outcomes through addressing social determinants of health and should be a topic of further investigation.

State policies regulating short-term limited duration insurance plans and cancer stage at diagnosis.

Short-term limited duration insurance plans, which proliferated following 2018 federal regulations, may not provide adequate protections for patients with suspected or newly diagnosed cancer and can destabilize insurance markets for comprehensive insurance plan enrollees. Individuals aged 18-64 years with newly diagnosed cancer from 11 states during 2016-2017 and 2019 were identified from the Surveillance, Epidemiology, and End Results program. Difference-in-differences analyses were used to compare changes in early-stage cancer diagnoses from 2016-2017 to 2019 in states that prohibited vs did not regulate short-term limited duration insurance plans. In adjusted difference-in-differences analyses, early-stage diagnoses increased 0.95 percentage points (95% confidence interval = 0.53 to 1.38, P < .001) in states that prohibited short-term limited duration insurance plans vs did not regulate short-term limited duration insurance plans. State policies resulting in unavailability of short-term limited duration insurance plans were associated with an increased percentage of early-stage diagnoses.

Do discussions of financial burdens decrease long-term financial toxicity in adolescent and young adult cancer survivors?

PURPOSE: This study aims to evaluate the associations between patient-provider cost discussions with patient-reported out-of-pocket (OOP) spending and long-term financial toxicity (FT) among adolescent and young adult (AYA; 15-39 years old) cancer survivors. METHODS: Using a cross-sectional survey, we assessed the themes and quality of patient discussions with providers about financial needs and general survivorship preparation, quantified patients' levels of FT, and evaluated patient-reported OOP spending. We determined the association between cancer treatment cost discussion and FT using multivariable analysis. In a subset of survivors (n = 18), we conducted qualitative interviews and used thematic analysis to characterize responses. RESULTS: Two hundred forty-seven AYA survivors completed the survey at a mean of 7 years post treatment and with a median COST score of 13. 70% of AYA survivors did not recall having any cost discussion about their cancer treatment with a provider. Having any cost discussion with a provider was associated with decreased FT (ß = 3.00; p = 0.02) but not associated with reduced OOP spending (χ2 = 3.77; p = 0.44). In a second adjusted model, with OOP spending included as a covariate, OOP spending was a significant predictor of FT (ß = - 1.40; p = 0.002). Key qualitative themes included survivors' frustration about the lack of communication related to financial issues throughout treatment and in survivorship, feeling unprepared, and reluctance to seek help. CONCLUSION: AYA patients are not fully informed about the costs of cancer care and FT; the dearth of cost discussions between patients and providers may represent a missed opportunity to reduce costs.

Financial Toxicity Order Set: Implementing a Simple Intervention to Better Connect Patients With Resources.

PURPOSE: Financial toxicity of cancer treatment is well described in the literature, including characterizations of its risk factors, manifestations, and consequences. There is, however, limited research on interventions, particularly those at the hospital level, to address the issue. METHODS: From March 1, 2019, to February 28, 2022, a multidisciplinary team conducted a three-cycle Plan-Do-Study-Act (PDSA) process to develop, test, and implement an electronic medical record (EMR) order set to directly refer patients to a hospital-based financial assistance program. The cycles included an assessment of the efficacy of our current practice in connecting patients experiencing financial hardship with assistance, the development and piloting of the EMR referral order, and the broad implementation of the order set across our institution. RESULTS: In PDSA cycle 1, we found that approximately 25% of patients at our institution experienced some form of financial hardship, but most patients were not connected to available resources because of our referral mechanism. In PDSA cycle 2, the pilot referral order set was deemed feasible and received positive feedback. Over the 12-month study period (March 1, 2021-February 28, 2022) of PDSA cycle 3, 718 orders were placed for 670 unique patients across interdisciplinary providers from 55 treatment areas. These referrals resulted in at least $850,000 in US dollars (USD) in financial aid in 38 patients (mean = $22,368 USD). CONCLUSION: The findings from our three-cycle PDSA quality improvement project demonstrate the feasibility and efficacy of interdisciplinary efforts to develop a hospital-level financial toxicity intervention. A simple referral mechanism can empower providers to connect patients in need with available resources.

A burden shared: the financial, psychological, and health-related consequences borne by family members and caregivers of people with cancer in India.

In India, approximately 1.4 million new cases of cancer are recorded annually, with 26.7 million people living with cancer in 2021. Providing care for family members with cancer impacts caregivers' health and financial resources. Effects on caregivers' health and financial resources, understood as family and caregiver "financial toxicity" of cancer, are important to explore in the Indian context, where family members often serve as caregivers, in light of cultural attitudes towards family. This is reinforced by other structural issues such as grave disparities in socioeconomic status, barriers in access to care, and limited access to supportive care services for many patients. Effects on family caregivers' financial resources are particularly prevalent in India given the increased dependency on out-of-pocket financing for healthcare, disparate access to insurance coverage, and limitations in public expenditure on healthcare. In this paper, we explore family and caregiver financial toxicity of cancer in the Indian context, highlighting the multiple psychosocial aspects through which these factors may play out. We suggest steps forward, including future directions in (1) health services research, (2) community-level interventions, and (3) policy changes. We underscore that multidisciplinary and multi-sectoral efforts are needed to study and address family and caregiver financial toxicity in India.

Financial Toxicity of Medical Management of Heart Failure: JACC Review Topic of the Week.

Optimal medical management of heart failure (HF) improves quality of life, decreases mortality, and decreases hospitalizations. Cost may contribute to suboptimal adherence to HF medications, especially angiotensin receptor-neprilysin inhibitors and sodium-glucose cotransporter-2 inhibitors. Patients' experiences with HF medication cost include financial burden, financial strain, and financial toxicity. Although there has been research studying financial toxicity in patients with some chronic diseases, there are no validated tools for measuring financial toxicity of HF, and very few data on the subjective experiences of patients with HF and financial toxicity. Strategies to decrease HF-associated financial toxicity include making systemic changes to minimize cost sharing, optimizing shared decision-making, implementing policies to lower drug costs, broadening insurance coverage, and using financial navigation services and discount programs. Clinicians may also improve patient financial wellness through various strategies in routine clinical care. Future research is needed to study financial toxicity and associated patient experiences for HF.

Changes in cancer mortality after Medicaid expansion and the role of stage at diagnosis.

BACKGROUND: Medicaid expansion is associated with improved survival following cancer diagnosis. However, little research has assessed how changes in cancer stage may mediate improved cancer mortality or how expansion may have decreased population-level cancer mortality rates. METHODS: Nationwide state-level cancer data from 2001 to 2019 for individuals ages 20-64 years were obtained from the combined Surveillance, Epidemiology, and End Results National Program of Cancer Registries (incidence) and the National Center for Health Statistics (mortality) databases. We estimated changes in distant stage cancer incidence and cancer mortality rates from pre- to post-2014 in expansion vs nonexpansion states using generalized estimating equations with robust standard errors. Mediation analyses were used to assess whether distant stage cancer incidence mediated changes in cancer mortality. RESULTS: There were 17 370 state-level observations. For all cancers combined, there were Medicaid expansion-associated decreases in distant stage cancer incidence (adjusted odds ratio = 0.967, 95% confidence interval = 0.943 to 0.992; P = .01) and cancer mortality (adjusted odds ratio = 0.965, 95% confidence interval = 0.936 to 0.995; P = .022). This translates to 2591 averted distant stage cancer diagnoses and 1616 averted cancer deaths in the Medicaid expansion states. Distant stage cancer incidence mediated 58.4% of expansion-associated changes in cancer mortality overall (P = .008). By cancer site subgroups, there were expansion-associated decreases in breast, cervix, and liver cancer mortality. CONCLUSIONS: Medicaid expansion was associated with decreased distant stage cancer incidence and cancer mortality. Approximately 60% of the expansion-associated changes in cancer mortality overall were mediated by distant stage diagnoses.

International medical tourism of US cancer patients for alternative cancer treatments: Financial, demographic, and clinical profiles of online crowdfunding campaigns.

BACKGROUND: Previous research has found that individuals may travel outside their home countries in pursuit of alternative cancer therapies (ACT). The goal of this study is to compare individuals in the United States who propose plans for travel abroad for ACT, compared with individuals who seek ACT domestically. METHODS: Clinical and treatment data were extracted from campaign descriptions of 615 GoFundMe® campaigns fundraising for individuals in the United States seeking ACT between 2011 and 2019. We examined treatment modalities, treatment location, fundraising metrics, and online engagement within campaign profiles. Clinical and demographic differences between those who proposed international travel and those who sought ACT domestically were examined using two-sided Fisher's exact tests. Differences in financial and social engagement data were examined using two-sided Mann-Whitney tests. RESULTS: Of the total 615 campaigns, 237 (38.5%) mentioned plans to travel internationally for ACT, with the majority (81.9%) pursuing travel to Mexico. Campaigns that proposed international treatment requested more money ($35,000 vs. $22,650, p < 0.001), raised more money ($7833 vs. $5035, p < 0.001), had more donors (57 vs. 45, p = 0.02), and were shared more times (377 vs. 290.5, p = 0.008) compared to campaigns that did not. The median financial shortfall was greater for campaigns pursuing treatments internationally (-$22,640 vs. -$13,436, p < 0.003). CONCLUSIONS: Campaigns proposing international travel for ACT requested and received more money, were shared more online, and had more donors. However, there was significantly more unmet financial need among this group, highlighting potential financial toxicity on patients and families.