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.

Health insurance status and cancer stage at diagnosis and survival in the United States.

Previous studies using data from the early 2000s demonstrated that patients who were uninsured were more likely to present with late-stage disease and had worse short-term survival after cancer diagnosis in the United States. In this report, the authors provide comprehensive data on the associations of health insurance coverage type with stage at diagnosis and long-term survival in individuals aged 18-64 years who were diagnosed between 2010 and 2013 with 19 common cancers from the National Cancer Database, with survival follow-up through December 31, 2019. Compared with privately insured patients, Medicaid-insured and uninsured patients were significantly more likely to be diagnosed with late-stage (III/IV) cancer for all stageable cancers combined and separately. For all stageable cancers combined and for six cancer sites-prostate, colorectal, non-Hodgkin lymphoma, oral cavity, liver, and esophagus-uninsured patients with Stage I disease had worse survival than privately insured patients with Stage II disease. Patients without private insurance coverage had worse short-term and long-term survival at each stage for all cancers combined; patients who were uninsured had worse stage-specific survival for 12 of 17 stageable cancers and had worse survival for leukemia and brain tumors. Expanding access to comprehensive health insurance coverage is crucial for improving access to cancer care and outcomes, including stage at diagnosis and survival.

The Affordable Care Act and access to care across the cancer control continuum: A review at 10 years.

Lack of health insurance coverage is strongly associated with poor cancer outcomes in the United States. The uninsured are less likely to have access to timely and effective cancer prevention, screening, diagnosis, treatment, survivorship, and end-of-life care than their counterparts with health insurance coverage. On March 23, 2010, the Patient Protection and Affordable Care Act (ACA) was signed into law, representing the largest change to health care delivery in the United States since the introduction of the Medicare and Medicaid programs in 1965. The primary goals of the ACA are to improve health insurance coverage, the quality of care, and patient outcomes, and to maintain or lower costs by catalyzing changes in the health care delivery system. In this review, we describe the main components of the ACA, including health insurance expansions, coverage reforms, and delivery system reforms, provisions within these components, and their relevance to cancer screening and early detection, care, and outcomes. We then highlight selected, well-designed studies examining the effects of the ACA provisions on coverage, access to cancer care, and disparities throughout the cancer control continuum. Finally, we identify research gaps to inform evaluation of current and emerging health policies related to cancer outcomes.

Mortality and morbidity ramifications of proposed retractions in healthcare coverage for the United States.

In the absence of universal healthcare in the United States, federal programs of Medicaid and Medicare are vital to providing healthcare coverage for low-income households and elderly individuals, respectively. However, both programs are under threat, with either enacted or proposed retractions. Specifically, raising Medicare age eligibility and the addition of work requirements for Medicaid qualification have been proposed, while termination of continuous enrollment for Medicaid was recently effectuated. Here, we assess the potential impact on mortality and morbidity resulting from these policy changes. Our findings indicate that the policy change to Medicare would lead to over 17,000 additional deaths among individuals aged 65 to 67 and those to Medicaid would lead to more than 8,000 deaths among those under the age of 65. To illustrate the implications for morbidity, we further consider a case study among those people with diabetes who would be likely to lose their health insurance under the policy changes. We project that these insurance retractions would lead to the loss of coverage for over 700,000 individuals with diabetes, including more than 200,000 who rely on insulin.

Adolescent and young adult oncology-past, present, and future.

There are nearly 70,000 new cancer diagnoses made annually in adolescents and young adults (AYAs) in the United States. Historically, AYA patients with cancer, aged 15 to 39 years, have not shown the same improved survival as older or younger cohorts. This article reviews the contemporary cancer incidence and survival data through 2015 for the AYA patient population based on the National Cancer Institute's Surveillance, Epidemiology, and End Results registry program and the North American Association of Central Cancer Registries. Mortality data through 2016 from the Centers for Disease Control and Prevention's National Center for Health Statistics are also described. Encouragingly, absolute and relative increases in 5-year survival for AYA cancers have paralleled those of childhood cancers since the year 2000. There has been increasing attention to these vulnerable patients and improved partnerships and collaboration between adult and pediatric oncology; however, obstacles to the care of this population still occur at multiple levels. These vulnerabilities fall into 3 significant categories: research efforts and trial enrollment directed toward AYA malignancies, access to care and insurance coverage, and AYA-specific psychosocial support. It is critical for providers and health care delivery systems to recognize that the AYA population remains vulnerable to provider and societal complacency.

Minimizing the burden of cancer in the United States: Goals for a high-performing health care system.

Between 1991 and 2015, the cancer mortality rate declined dramatically in the United States, reflecting improvements in cancer prevention, screening, treatment, and survivorship care. However, cancer outcomes in the United States vary substantially between populations defined by race/ethnicity, socioeconomic status, health insurance coverage, and geographic area of residence. Many potentially preventable cancer deaths occur in individuals who did not receive effective cancer prevention, screening, treatment, or survivorship care. At the same time, cancer care spending is large and growing, straining national, state, health insurance plans, and family budgets. Indeed, one of the most pressing issues in American medicine is how to ensure that all populations, in every community, derive the benefit from scientific research that has already been completed. Addressing these questions from the perspective of health care delivery is necessary to accelerate the decline in cancer mortality that began in the early 1990s. This article, part of the Cancer Control Blueprint series, describes challenges with the provision of care across the cancer control continuum in the United States. It also identifies goals for a high-performing health system that could reduce disparities and the burden of cancer by promoting the adoption of healthy lifestyles; access to a regular source of primary care; timely access to evidence-based care; patient-centeredness, including effective patient-provider communication; enhanced coordination and communication between providers, including primary care and specialty care providers; and affordability for patients, payers, and society.

The risk of losing health insurance in the United States is large, and remained so after the Affordable Care Act.

Health insurance coverage in the United States is highly uncertain. In the post-Affordable Care Act (ACA), pre-COVID United States, we estimate that while 12.5% of individuals under 65 are uninsured at a point in time, twice as many-one in four-are uninsured at some point over a 2-y period. Moreover, the risk of losing insurance remained virtually unchanged with the introduction of the landmark ACA. Risk of insurance loss is particularly high for those with health insurance through Medicaid or private exchanges; they have a 20% chance of losing coverage at some point over a 2-y period, compared to 8.5% for those with employer-provided coverage. Those who lose insurance can experience prolonged periods without coverage; about half are still uninsured 6 mo later, and almost one-quarter are uninsured for the subsequent 2 y. These facts suggest that research and policy attention should focus not only on the "headline number" of the share of the population uninsured at a point in time, but also on the stability and certainty (or lack thereof) of being insured.

Eliminating Medication Copayments for Low-Income Older Adults at High Cardiovascular Risk: A Randomized Controlled Trial.

BACKGROUND: One in eight people with heart disease has poor medication adherence that, in part, is related to copayment costs. This study tested whether eliminating copayments for high-value medications among low-income older adults at high cardiovascular risk would improve clinical outcomes. METHODS: This randomized 2×2 factorial trial studied 2 distinct interventions in Alberta, Canada: eliminating copayments for high-value preventive medications and a self-management education and support program (reported separately). The findings for the first intervention, which waived the usual 30% copayment on 15 medication classes commonly used to reduce cardiovascular events, compared with usual copayment, is reported here. The primary outcome was the composite of death, myocardial infarction, stroke, coronary revascularization, and cardiovascular-related hospitalizations over a 3-year follow-up. Rates of the primary outcome and its components were compared using negative binomial regression. Secondary outcomes included quality of life (Euroqol 5-dimension index score), medication adherence, and overall health care costs. RESULTS: A total of 4761 individuals were randomized and followed for a median of 36 months. There was no evidence of statistical interaction (P=0.99) or of a synergistic effect between the 2 interventions in the factorial trial with respect to the primary outcome, which allowed us to evaluate the effect of each intervention separately. The rate of the primary outcome was not reduced by copayment elimination, (521 versus 533 events, incidence rate ratio 0.84 [95% CI, 0.66-1.07], P=0.162). The incidence rate ratio for nonfatal myocardial infarction, nonfatal stroke, and cardiovascular death (0.97 [95% CI, 0.67-1.39]), death (0.94 [95% CI, 0.80 to 1.11]), and cardiovascular-related hospitalizations (0.78 [95% CI, 0.57 to 1.06]) did not differ between groups. No significant between-group changes in quality of life over time were observed (mean difference, 0.012 [95% CI, -0.006 to 0.030], P=0.19). The proportion of participants who were adherent to statins was 0.72 versus 0.69 for the copayment elimination versus usual copayment groups, respectively (mean difference, 0.03 [95% CI, 0.006-0.06], P=0.016). Overall adjusted health care costs did not differ ($3575 [95% CI, -605 to 7168], P=0.098). CONCLUSIONS: In low-income adults at high cardiovascular risk, eliminating copayments (average, $35/mo) did not improve clinical outcomes or reduce health care costs, despite a modest improvement in adherence to medications. REGISTRATION: URL: https://www. CLINICALTRIALS: gov; Unique identifier: NCT02579655.

Using Insurance Claims Data to Estimate Blastomycosis Incidence, Vermont, USA, 2011-2020.

The epidemiology of blastomycosis in Vermont, USA, is poorly understood. Using insurance claims data, we estimated the mean annual blastomycosis incidence was 1.8 patients/100,000 persons during 2011-2020. Incidence and disease severity were highest in north-central counties. Our findings highlight a need for improved clinical awareness and expanded surveillance.

Machine learning for detection of heterogeneous effects of Medicaid coverage on depression.

In 2008, Oregon expanded its Medicaid program using a lottery, creating a rare opportunity to study the effects of Medicaid coverage using a randomized controlled design (Oregon Health Insurance Experiment). Analysis showed that Medicaid coverage lowered the risk of depression. However, this effect may vary between individuals, and the identification of individuals likely to benefit the most has the potential to improve the effectiveness and efficiency of the Medicaid program. By applying the machine learning causal forest to data from this experiment, we found substantial heterogeneity in the effect of Medicaid coverage on depression; individuals with high predicted benefit were older and had more physical or mental health conditions at baseline. Expanding coverage to individuals with high predicted benefit generated greater reduction in depression prevalence than expanding to all eligible individuals (21.5 vs 8.8 percentage-point reduction; adjusted difference = +12.7 [95% CI, +4.6 to +20.8]; P = 0.003), at substantially lower cost per case prevented ($16 627 vs $36 048; adjusted difference = -$18 598 [95% CI, -156 953 to -3120]; P = 0.04). Medicaid coverage reduces depression substantially more in a subset of the population than others, in ways that are predictable in advance. Targeting coverage on those most likely to benefit could improve the effectiveness and efficiency of insurance expansion. This article is part of a Special Collection on Mental Health.

The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination.

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. It shows how GD can take many forms in today's rapidly evolving society.

Health insurance literacy among patients receiving outpatient cancer treatment.

BACKGROUND: This study examines patients' understanding of health insurance terms and concepts and quantifies health insurance literacy (HIL) levels by key sociodemographic factors. METHODS: This study included 393 adult patients with cancer (>18 years old) receiving treatment in two ambulatory infusion centers: Mayo Clinic in Phoenix, Arizona and the University of Mississippi Medical Center in Jackson, Mississippi. Respondents' perceptions of their HIL were assessed using the Health Insurance Literacy Measure (HILM), a validated 21-item measure of a consumer's ability to select and use health insurance (HIL self-efficacy). Respondents' knowledge of health insurance concepts (HIL knowledge) was measured using 10 items created by the Kaiser Family Foundation. The number of correct answers was categorized into three levels: 0-4 (low knowledge), 5-6 (moderate knowledge), and 7-10 (high knowledge). Multivariable logistic regressions were used to compare correct answers to HIL knowledge questions by HIL self-efficacy. RESULTS: Nearly three-quarters of patients had high HIL self-efficacy and high HIL knowledge (70.5%), understanding basic insurance terms, such as premiums and deductibles. Relatively low percentages of patients correctly answered questions about the meaning of provider networks, health insurance formularies, and calculating out-of-pocket spending in scenarios when insurers pay a portion of allowed charges. Lower HIL knowledge was more common among patients with less educational attainment (

Urologist practice divestment from radiation vault ownership and treatment patterns for prostate cancer.

BACKGROUND: Urologists practicing in single-specialty groups with ownership in radiation vaults are more likely to treat men with prostate cancer. The effect of divestment of vault ownership on treatment patterns is unclear. METHODS: A 20% sample of national Medicare claims was used to perform a retrospective cohort study of men with prostate cancer diagnosed between 2010 and 2019. Urology practices were categorized by radiation vault ownership as nonowners, continuous owners, and divested owners. The primary outcome was use of local treatment, and the secondary outcome was use of intensity-modulated radiation therapy (IMRT). A difference-in-differences framework was used to measure the effect of divestment on outcomes compared to continuous owners. Subgroup analyses assessed outcomes by noncancer mortality risk (high [>50%] vs. low [≤50%]). RESULTS: Among 72 urology practices that owned radiation vaults, six divested during the study. Divestment led to a decrease in treatment compared with those managed at continuously owning practices (difference-in-differences estimate, -13%; p = .03). The use of IMRT decreased, but this was not statistically significant (difference-in-differences estimate, -10%; p = .13). In men with a high noncancer mortality risk, treatment (difference-in-differences estimate, -28%; p < .001) and use of IMRT (difference-in-differences estimate, -27%; p < .001) decreased after divestment. CONCLUSIONS: Urology group divestment from radiation vault ownership led to a decrease in prostate cancer treatment. This decrease was most pronounced in men who had a high noncancer mortality risk. This has important implications for health care reform by suggesting that payment programs that encourage constraints on utilization, when appropriate, may be effective in reducing overtreatment.

Association of state Medicaid expansion policies with pediatric liver transplant outcomes.

Children from minoritized/socioeconomically deprived backgrounds suffer disproportionately high rates of uninsurance and graft failure/death after liver transplant. Medicaid expansion was developed to expand access to public insurance. Our objective was to characterize the impact of Medicaid expansion policies on long-term graft/patient survival after pediatric liver transplantation. All pediatric patients (<19 years) who received a liver transplant between January 1, 2005, and December 31, 2020 in the US were identified in the Scientific Registry of Transplant Recipients (N = 8489). Medicaid expansion was modeled as a time-varying exposure based on transplant and expansion dates. We used Cox proportional hazards models to evaluate the impact of Medicaid expansion on a composite outcome of graft failure/death over 10 years. As a sensitivity analysis, we conducted an intention-to-treat analysis from time of waitlisting to death (N = 1 1901). In multivariable analysis, Medicaid expansion was associated with a 30% decreased hazard of graft failure/death (hazard ratio, 0.70; 95% confidence interval, 0.62, 0.79; P < .001) after adjusting for Black race, public insurance, neighborhood deprivation, and living in a primary care shortage area. In intention-to-treat analyses, Medicaid expansion was associated with a 72% decreased hazard of patient death (hazard ratio, 0.28; 95% confidence interval, 0.23-0.35; P < .001). Policies that enable broader health insurance access may help improve outcomes and reduce disparities for children undergoing liver transplantation.

What Has the Undiagnosed Diseases Network Taught Us About the Clinical Applications of Genomic Testing?

Genetic testing has undergone a revolution in the last decade, particularly with the advent of next-generation sequencing and its associated reductions in costs and increases in efficiencies. The Undiagnosed Diseases Network (UDN) has been a leader in the application of such genomic testing for rare disease diagnosis. This review discusses the current state of genomic testing performed within the UDN, with a focus on the strengths and limitations of whole-exome and whole-genome sequencing in clinical diagnostics and the importance of ongoing data reanalysis. The role of emerging technologies such as RNA and long-read sequencing to further improve diagnostic rates in the UDN is also described. This review concludes with a discussion of the challenges faced in insurance coverage of comprehensive genomic testing as well as the opportunities for a larger role of testing in clinical medicine.

Commercial Versus Medicaid Insurance and Use of High-Priced Anticancer Treatments.

BACKGROUND: Because the markups on cancer drugs vary by payor, providers' financial incentive to use high-price drugs is differential according to each patient's insurance type. We evaluated the association between patient insurer (commercial vs Medicaid) and the use of high-priced cancer treatments. MATERIALS AND METHODS: We linked cancer registry, administrative claims, and demographic data for individuals diagnosed with cancer in North Carolina from 2004 to 2011, with either commercial or Medicaid insurance. We selected cancers with multiple FDA-approved, guideline-recommended chemotherapy options and large price differences between treatment options: advanced colorectal, lung, and head and neck cancer. The outcome was a receipt of a higher-priced option, and the exposure was insurer: commercial versus Medicaid. We estimated risk ratios (RRs) for the association between insurer and higher-priced treatment using log-binomial models with inverse probability of exposure weights. RESULTS: Of 812 patients, 209 (26%) had Medicaid. The unadjusted risk of receiving higher-priced treatment was 36% (215/603) for commercially insured and 27% (57/209) for Medicaid insured (RR: 1.31, 95% CI: 1.02-1.67). After adjustment for confounders the association was attenuated (RR: 1.15, 95% CI: 0.81-1.65). Exploratory subgroup analysis suggested that commercial insurance was associated with increased receipt of higher-priced treatment among patients treated by non-NCI-designated providers (RR: 1.53, 95% CI: 1.14-2.04). CONCLUSIONS: Individuals with Medicaid and commercial insurance received high-priced treatments in similar proportion, after accounting for differences in case mix. However, modification by provider characteristics suggests that insurance type may influence treatment selection for some patient groups. Further work is needed to determine the relationship between insurance status and newer, high-price drugs such as immune-oncology agents.

White Paper: American Gastroenterological Association Position Statement: The Future of IBD Care in the United States-Removing Barriers and Embracing Opportunities.

Despite incredible growth in systems of care and rapidly expanding therapeutic options for people with inflammatory bowel disease, there are significant barriers that prevent patients from benefiting from these advances. These barriers include restrictions in the form of prior authorization, step therapy, and prescription drug coverage. Furthermore, inadequate use of multidisciplinary care and inflammatory bowel disease specialists limits patient access to high-quality care, particularly for medically vulnerable populations. However, there are opportunities to improve access to high-quality, patient-centered care. This position statement outlines the policy and advocacy goals that the American Gastroenterological Association will prioritize for collaborative efforts with patients, providers, and payors.

Financial burden among metastatic breast cancer patients: a qualitative inquiry of costs, financial assistance, health insurance, and financial coping behaviors.

PURPOSE: Metastatic breast cancer (MBC) patients often face substantial financial burden due to prolonged and expensive therapy. However, in-depth experiences of financial burden among MBC patients are not well understood. METHODS: Qualitative interviews were conducted to describe the experiences of financial burden for MBC patients, focusing on the drivers of financial burden, their experience using their health insurance, accessing financial assistance, and any resulting cost-coping behaviors. Interviews were transcribed and qualitatively analyzed using a descriptive phenomenological approach to thematic analysis. RESULTS: A total of n = 11 MBC patients or caregiver representatives participated in the study. MBC patients were on average 50.2 years of age (range: 28-65) and 72.7% non-Hispanic White. MBC patients were diagnosed as metastatic an average of 3.1 years (range: 1-9) before participating in the study. Qualitative analysis resulted in four themes including (1) causes of financial burden, (2) financial assistance mechanisms, (3) health insurance and financial burden, and (4) cost-coping behaviors. Both medical and non-medical costs drove financial burden among participants. All participants reported challenges navigating their health insurance and applying for financial assistance. Regardless of gaining access to assistance, financial burden persisted for nearly all patients and resulted in cost-coping behaviors. CONCLUSION: Our findings suggest that current systems for health insurance and financial assistance are complex and difficult to meet patient needs. Even when MBC patients accessed assistance, excess financial burden persisted necessitating use of financial coping-behaviors such as altering medication use, maintaining employment, and taking on debt.

Survival among lung cancer patients: comparison of the U.S. military health system and the surveillance, epidemiology, and end results (SEER) program by health insurance status.

PURPOSE: The U.S. military health system (MHS) provides beneficiaries with universal health care while health care access varies in the U.S. general population by insurance status/type. We divided the patients from the U.S. general population by insurance status/type and compared them to the MHS patients in survival. METHODS: The MHS patients were identified from the Department of Defense's Automated Central Tumor Registry (ACTUR). Patients from the U.S. general population were identified from the Surveillance, Epidemiology, and End Results (SEER) program. Multivariable Cox regression analysis was conducted to compare different insurance status/type in SEER to ACTUR in overall survival. RESULTS: Compared to ACTUR patients with non-small cell lung cancer (NSCLC), SEER patients showed significant worse survival. The adjusted hazard ratios (HRs) were 1.08 [95% Confidence Interval (CI) = 1.03-1.13], 1.22 (95% CI = 1.16-1.28), 1.40 (95% CI = 1.33-1.47), 1.50 (95% CI = 1.41-1.59), for insured, insured/no specifics, Medicaid, and uninsured patients, respectively. The pattern was consistently observed in subgroup analysis by race, gender, age, or tumor stage. Results were similar for small cell lung cancer (SCLC), although they were only borderline significant in some subgroups. CONCLUSION: The survival advantage of patients receiving care from a universal health care system over the patients from the general population was not restricted to uninsured or Medicaid as expected, but was present cross all insurance types, including patients with private insurance. Our findings highlight the survival benefits of universal health care system to lung cancer patients.

Prevalence and predictors of colorectal cancer screening in the United States: evidence from the HINTS database 2018 to 2020.

BACKGROUND: The incidence of colorectal cancer (CRC) and CRC-related mortality among young adults (< 50 years) has been on the rise. The American Cancer Society (ACS) reduced the CRC screening age to 45 in 2018. Few studies have examined the barriers to CRC screening among young adults. METHODS: Analyses were conducted using data from 7,505 adults aged 45-75 years who completed the 2018 to 2020 Health Information National Trends Survey. We examined the sociodemographic characteristics associated with CRC screening overall and by age group using separate multivariable logistic regression models. RESULTS: 76% of eligible adults had received screening for CRC. Increasing age, Black racial group [OR 1.45; 95% CI (1.07, 1.97)], having some college experience, a college degree or higher [OR 1.69; 95% CI (1.24, 2.29)], health insurance coverage [OR 4.48; 95% CI (2.96, 6.76)], primary care provider access [OR 2.48; 95% CI (1.91, 3.22)] and presence of a comorbid illness [OR 1.39; 95% CI (1.12, 1.73)] were independent predictors of CRC screening. Current smokers were less likely to undergo CRC screening [OR 0.59; 95% CI (0.40, 0.87)]. Among adults aged 50-64 years, being of Hispanic origin [OR 0.60; 95% CI (0.39, 0.92)] was associated with a lower likelihood of CRC screening. CONCLUSION: CRC screening rates among adults 45-49 years are low but are increasing steadily. Odds of CRC screening among Blacks is high which is encouraging while the odds among current smokers is low and concerning given their increased risk of developing CRC.