Inequity in cancer and cancer care delivery in the United States

INTRODUCTION

While overall outcomes for cancer care have improved considerably in the United States (US) over the past century, as evidenced by decreases in incidence and mortality of certain cancers, inequities in access, affordability, outcomes and the overall burden of cancer persists for many populations. At the individual and community levels, socioeconomic status, race and ethnicity, language, gender identity and sexual orientation, disability status, and rural place of residence to name but a few contribute to inequities for those faced with the disease. Such gaps in care are present across the globe, but there is a specific historical context that shape the inequity of health status, incidence of cancer, type of care received, patient experience and outcomes in the United States.

Here we will provide an overview of important historical factors that have shaped the current health and health care inequities in the US. We will outline examples of inequities in incidence and mortality as well as gaps along the continuum of cancer care, spanning screening and timely diagnosis through treatment outcomes, survivorship and end of life care. We will then provide a conceptual framework with which we can begin to understand the drivers of these inequities, while keeping an eye towards solutions for addressing cancer inequities. Finally, we will discuss community-grounded and action-oriented approaches to addressing cancer inequities, including public policy, care delivery transformation, diversification and empowerment of the cancer care work-force, and an expansion of transdisciplinary research that targets inequity.

HISTORY

Of all the forms of inequality, injustice in health is the most shocking and the most inhuman.

The Rev. Martin Luther King, Jr. at the Second National Convention of the Medical Committee for Human Rights. Chicago, IL, March 25, 1966.

Inequality in health and healthcare, especially for Black and poor communities, has been present since the inception of the United States of America. Systematic and structural disparities in the incidence and treatment of disease were manifest during the genocidal displacement of native populations and the nearly 250 years of chattel slavery. Inequities in health and health care have been especially well-documented since the turn of the 20^th century when W.E.B. Du Bois systematically documented the social and political drivers of health outcomes. In his seminal works The Philadelphia Negro, and The Health and Physique of the Negro American, Du Bois refuted claims of physiologic inferiority of Black persons as the cause of disparities. To the contrary, he documented a multitude of social drivers of unequal health and health care outcomes, notably 1) discrimination in life insurance coverage, 2) community education, 3) public health infrastructure, 4) socioeconomic stresses, 5) poor diet and access to quality food, 6) lack of access to high quality hospitals, and 7) lack of diversity in the health care workforce or the medical school pipeline.^1,2,3 In the decades before the Civil Rights Era, efforts aimed at health inequality, such as the creation of Black medical schools and hospitals, as well as the National Negro Health Week movement, indeed improved the overall wellbeing and health care for Black communities, but it did so without addressing the underlying structural inequality that drove ongoing gaps in care. While the Civil Rights Act, Voting Rights Act, and creation of Medicare and Medicaid technically eliminated de jure segregation in the United States, longstanding systems remained in place, including in health care delivery, which allow de facto inequities to persist to this day.

In addition to the legacy of slavery, Jim Crow, and segregation, America is also unique in terms of our lack of universal healthcare coverage. Even after implementation of the 2010 Affordable Care Act, there are currently an estimated 27.5 million people, under the age of 65 living in the United States without health insurance coverage.⁴ The influence of policy decisions on these gaps in coverage are immediately evident when most uninsured Americans reside in states that opted against expanding coverage to the country’s most vulnerable populations via Medicaid under the Affordable Care Act. Furthermore, insurance coverage for the other nearly 300 million Americans is spread out across multiple different payors, comprised of private insurance companies (54.6%), government insurance for low-income Americans (Medicaid, 21.1% ) and the military (1.3%).⁵ Less than 1% of Americans over the age of 65 are uninsured, since Medicare provides coverage for most of that population.⁵ Moreover, payors have a large degree of discretion in terms of what services are covered by insurance, and where patients can receive this care. The variation in payors, covered services, participation by health systems, and costs to patients results in a system that is fragmented, difficult to navigate, and fraught with inefficiencies, often resulting in underinsurance for patients, variation in health care utilization, and discrepant spending.^6, These challenges are compounded for patients who face the uncertainty and complexity of multidisciplinary cancer care, with consequences ranging from financial toxicity and increased stress, to increased mortality for marginalized populations across the country.⁷

DISCUSSION

Inequities exist along the continuum of cancer care, and contributes to the disparate incidence of select cancer, more advanced disease at time of diagnosis, decreased receipt of and responsiveness to treatment, and impaired survivorship experience (Figure 1). Historically marginalized (hereinafter “marginalized”) populations include, but is certainly not limited to marginalized racial and ethnic identities, communities of lower socioeconomic status, low English proficiency, and limited ability status, as well as populations living in rural areas of the country, older adults, and sexual and gender minorities. Significant gaps in care exist for a multitude of populations of marginalized and intersectional identities. Applying the appropriate lens, definitions and frameworks are essential in understanding the drivers of cancer inequities and formulating targeted interventions to specifically improve inequities in cancer care.

Figure 1.

Causal pathways for clinical outcomes and health equity in cancer care

Framing Inequities

Drawing on the WHO definition, disparities in cancer care can be understood as systematic differences in cancer incidence, treatment, or outcomes for different populations or groups. However, such disparities are better described with the more normative term of “inequity” when these differences are rooted in deeper social, historical, and structural inequities and injustice.⁸ The more disparities in health have been evaluated over time, the more we can appreciate the extent to which differences in outcomes between populations are driven by these deeper systemic and structural factors rather than some fixed, immutable, or innately biologic process. As such, the systematic differences in cancer care are best conceptualized as inequities, and the drivers of these inequities include different levels of racism, social or economic marginalization or oppression, or structural exclusion.^4,9,10,11 Across many demographics, reflecting income, race, ethnicity, language, gender identity, sexual orientation, age and geography, there are many forms of health inequities such as gaps in access to, receipt of, and outcomes from cancer care.

Drivers of Inequities

Health and cancer inequities are not fixed, immutable realties, but rather are shaped by specific policies, systems and structures, personal choices, interpersonal relationships and dynamics, and internalized racism (Figure 2). The political determinants of health (PDOH) framework recognizes that specific policies, regulations, legislation, and legal decisions shape the social environment in which we all live.¹² These determinants in turn shape the more frequently considered social determinants of health (SDOH). SDOH considers the intersection between factors like education, housing, employment, neighborhood environment, food availability, transportation, etc., and their remarkable impact on access to care through primary care and specialty providers, overall health, development of chronic medical conditions, outcomes and life expectancy. These broader social conditions undoubtedly also influence the individual met and unmet social needs of individual patients. While the concepts are interrelated, understanding the multiple different levels that influence community and patient health is fundamental to developing specific strategies to address inequities at the level of individual patient, community, and larger social systems in which they live.

Figure 2:

Political and social determinants of health framework.

The interpersonal drivers of inequity are very well described, especially in the context of how interpersonal racism influences care in the United States and are deeply rooted in mistrust based on historical treatment.¹³ Marginalized patients have delayed access to care but also are less likely to receive indicated care even when they present at the same stage as others. For example, Black patients are significantly less likely to receive cancer-directed surgery compared to non-Hispanic White patients.^14,15,16 Furthermore, patient experience of bias or racism in the clinical setting has been associated with decreased completion of recommended services.¹⁷ Educational initiatives and trainings addressing cultural competence, cultural dexterity, and trauma-informed care target these interpersonal drivers of inequity.^18,19,20

Finally, the intrapersonal, or internalized, drivers of inequity have also been most well described in the context of Black health in the United States. Perceived racism has been shown to be associated with multiple physiologic and even intergenerational changes on the human body with deleterious ramifications. Racism is associated with increased cortisol levels, increased insulin insensitivity, and decreased telomere length.^21,22,23,24 The rise of epigenetic, multi-omic, and microbiome sciences are further elucidating the ways in which social and moral drivers, like racism, have fundamental physiological manifestations within the human body.^25,26,27,28 As such, transdisciplinary research that incorporates the span of social and medical sciences should play a central role in unpacking the mechanisms and solutions for inequities in cancer care in the years to come.^29,30

Current Evidence

Incidence of Cancer

Overall incidence of cancer remains relatively stable for males at around 449.4 new cases per 100,000 in the US, although it continues to rise slightly for female patients up to approximately 423.3 new diagnoses per 100,000 people.³¹ The most common diagnosis for males and females are cancers of the prostate (29%) and breast (31%) for males and females, respectively. This is followed by cancer of the lung and bronchus cancers, and colorectal cancer for both men and women.

Overall, non-Hispanic Black communities have a higher rate of nearly all cancers.³² There remains persistent disparities in the incidence of select cancers, especially in the rate of prostate, colorectal, liver, gastric and lung cancer for Black men.^8,9 While the overall rates of prostate, lung, and colorectal cancers have been declining for men overall, there has been a very significant shift in the incidence of young-onset (less than 50 years of age at diagnosis) colorectal cancer within younger men, especially White patients where there has been nearly a 50% increase from the mid 1990’s to the early 2010’s.³³ This is driven largely by disproportionate increase in colon cancer for White patients while rates have stabilized for non-Hispanic Black patients. There remains considerable uncertainty regarding the overall increase in young-onset colorectal cancer as well as the disproportionate increase in White patients with colon cancer.

Access to timely diagnosis and care

One of the leading causes of inequitable outcomes of cancer in the United States stems from decreased access to cancer screening and increased probability of presenting with advanced stage disease. Lower socioeconomic status and lack of insurance in the United States are consistently shown to be associated with later stage cancer at the time of diagnosis.⁹ Additionally, multiple studies have shown insurance expansion to be associated with earlier and less emergent diagnosis with colon cancer along with an increase in the proportion of patients presenting with Stage I breast, colon, and lung cancer.^34,35

Prevention of cancer development and early diagnosis is contingent upon both preventive services and screening of appropriate cancer. From a preventative standpoint, multiple studies have shown marginalized communities has having decreased awareness of specific cancer risks and behavioral contributors to cancer development.^36,37,38,39 Gaps in cancer screening rates have been well documented, especially for cervical, breast, and colorectal cancers.⁴⁰ National programs, including through the ACA, have been developed and implemented to improve early detection and policies implemented to increase screening services.⁴¹ Despite this concerted effort, there are still significant gaps in cancer screening for marginalized populations, including by populations with low English speaking proficiency, low health literacy, and limited transportation.^{42,43,44,45,46}

Receipt of Care Cancer Treatment

While later stage at time of presentation may be a leading mechanism of inequities, additional aspects of care delivery also contribute to inequitable outcomes. Uninsured and low-income patients and communities have significantly less likelihood of receiving guideline concordant care, even when accounting for later stage at the time of presentation.^47,48,49 Uninsured patients are significantly less likely to receive cancer-directed surgery for solid organ malignancy including cancer of the breast, colon and rectum, and lung.^50,51 Furthermore, patients with residence in communities of lower socioeconomic status or rural geography (for example, areas with fewer than 50,000 residents) are significantly less likely to receive cancer-directed surgery, suggesting that the gaps in receiving care are not solely based on insurance coverage alone.⁵² Multiple studies have shown interpersonal racism, communication and cultural barriers, and patient-provider race/ethnicity discordance play a major role in the failure of patients receiving cancer-directed surgery. Additionally, the referral patterns and site of care delivery also play important roles in gaps in cancer directed surgery, with uninsured, low-income, and marginalized patients having lower likelihood of being evaluated by surgical specialist or at a high surgical volume facility.

The increasingly multidisciplinary approach to cancer also requires critical coordination of therapeutic modalities, including surgery, chemotherapy, and radiation. As was the case in surgical care, low-income and marginalized communities are significantly less-likely to receive guideline recommended chemotherapy (for example in Stage III colon cancer), radiation (for example in rectal cancer), and appropriate sequencing or use of multiple treatment modalities.^37,53,54,55 As the complexity of cancer care continues to increase, the advances also create new opportunities for gaps in care to occur that ultimately influence outcomes. Care coordination with the use of clinical pathways or nurse navigators have shown promise at not only improving overall care delivery but also decreasing disparities in care across communities. However, many of the mission-driven clinics and institutions providing care for low-income and marginalized communities are themselves under resourced due to unfavorable payor-mix and lack of inadequate supplemental funding. When compared to other countries, this is a component of the US health care structure that may fail patients and perpetuate inequities.

Beyond guideline-concordant cancer-directed therapies, it is also important to consider inequities in access to clinical trials and use of palliative and hospice care for patients with more advanced disease as additional treatments. Structural racism in how clinical trials are conducted has been recognized for decades and there are now important investments and strategies to increase access to trials across North America. These efforts are critical not only to ensure all patients are able to benefit from potentially cutting-edge therapeutics, but also to ensure that the science behind our clinical guidelines is truly representative of all communities. Finally, end-of-life and survivorship care often represents the tailing aspects of cancer care delivery. While the cancer community attempts to better understand how to expand and integrate palliative care, hospice, and survivorship programs, there are data to suggest that communities are presently not having equal access to, or use of, these services most effectively and equitably. For example, rural place of residence has been shown to be associated with decreased use of palliative care for advanced pancreatic cancer.⁵⁶ Low-income and marginalized communities have also been shown to have decreased receipt of hospice care and an increased use of inpatient hospitalization at the end of life.^57,58,59

Outcomes of Cancer Care

In addition to disparities in access to and receipt of cancer-directed treatment, there are significant inequities in outcomes from care. While overall survival from cancers is improving in the United States, there are multiple gaps in care that persist. The increase in insurance coverage associated with the Patient Protection and Affordable Care Act has been associated with earlier stage at diagnosis, which in turn is associated with increased survival. However, even when possessing the same insurance coverage in the United States, patients residing in communities of greater socioeconomic disadvantage have significantly worse survival with cancer.⁶⁰ Similarly, cancer deaths for non-Hispanic Black patients have decreased significantly over past decade, but there remain considerable gaps in survival between non-Hispanic Black and White patients.⁶¹ Similarly, the introduction of newer screening or treatment options may have overall benefit, especially for better-insured and White populations, asymmetric introduction, uptake, or use has the potential to simultaneously introduce new racial or socioeconomic disparities.⁶² Among cancer survivors, socioeconomic and racial inequities in quality of life and financial toxicity remain a challenge. Looking at 301 survivors of colorectal cancer, low-income patients had significantly worse quality of life, including higher pain interference, lower physical function, and higher depression scores as compared to higher income patients.⁶³

Approaches to Addressing Inequities

There are multiple levels at which cancer care inequities are being addressed in the United States.⁶⁴ These range from the upstream public policy and regulations at the federal and state levels to downstream care redesign and diversification of clinical trials (Table 1). On health policy front, further expansion of health insurance through expanded Medicaid expansion in states that have not done so already, increased Medicaid payment parity, and ensuring Medicaid payment for certain services, including care in clinical trials which are an important point of access to drugs and other cutting-edge approaches to treatment. Additionally, national policy guidelines targeting equity could help establish health equity outcome measures and toolkits to empower practices. Federal legislation can also help expand patient navigation and promote reimbursement for such services. Finally, as the Oncology Care Model and other bundled care payments are rolled out, we must identify mechanisms to ensure access to and receipt of quality cancer care for marginalized populations.

Table 1.

Approaches to addressing inequity in cancer research, care delivery, and outcomes

Domains	Example
Health Policy	– Affordable Care Act65,66 – State-based insurance expansions and other policies67,68 – Funding for systems addressing social determinants of health69 – Cancer Moonshot70
Care Redesign	– Alternative payment models71 – Equity oriented interventions to close racial disparities72 – Increased navigation services at cancer centers73
Health Care Workforce	– Increasing pipeline of future oncologist through community engagement, scholarships, and addressing institutional discrimination74,75
Cancer Care Research	– Community trials network expanding access to and diversity in clinical trials76 – Pragmatic trial design77,78 – Transdisciplinary research bridging upstream and downstream drivers and outcomes27,28 – Clinical Treatment Act79

Beyond policy, efforts to address equity in cancer care should both engage and empower community partners, yielding priorities, funding, and deliverables to the community rather than keeping influence and products within health system. The research community can help develop toolkits to collect SDOH data and operationalize data to specifically target equity as quality improvement goal. Finally, there can be considerable improvements in increasing diversity and representation within the clinical trial process. Expansion of trial eligibility and participation has been recognized as a top priority of the National Cancer Institutes, American Society of Clinical Oncology, and Centers for Medicare and Medicaid Services.

SUMMARY

Cancer inequity in the United States spans the clinical continuum and is influenced by historical, structural, systemic, interpersonal, and intrapersonal racism and oppression. These gaps in cancer outcomes exist for marginalized populations from increased incidence of select cancer, later stage at diagnosis, decreased receipt of cancer-directed therapy, and worse survival. Understanding the political and social determinants of health and causal framework is important for strategically ensuring equity in cancer care in the United States.

Synopsis:

Inequity exists along the continuum of cancer and cancer care delivery in the United States. Marginalized populations have later stage cancer at diagnosis, decreased likelihood of receiving cancer directed care, worse outcomes from treatment. These inequities are driven by historical, structural, systemic, interpersonal, and internalized factors that influence cancer across the pathologic and clinical continuum. To ensure equity in cancer care, interventions are needed at level of policy, care delivery, interpersonal communication, diversity within the clinical workforce, clinical trial accessibility and design.

Clinics Care Points (Key Points).

• Inequities in cancer exist along clinical continuum from incidence/epidemiology through survivorship

• Cancer inequities are driven by multilevel and intersecting drivers of health and health care.

• Solutions to inequities require multi-prong approaches including addressing the PDoH, engaging community-driven initiative, increasing diversity of medical workforce, increasing enrollment in clinical trials, and transdisciplinary research.