Disparities in cancer care: A long way to go

Abstract

The 2023 American Cancer Society (ACS) report on cancer disparities highlights the persistent issues related to inequities in cancer incidences and outcomes.¹ Black individuals continue to be diagnosed at higher incidence rates than White individuals with multiple cancers, including colorectal, pancreatic, lung, prostate, and cervical cancers. The report also reveals that Black patients with the same cancers as White patients have a 16%–20% higher mortality rate.

These findings highlight that disparities persist and how difficult the challenges are to address them, particularly when they cannot be attributed easily to any one factor. In the 2023 ACS report, for example, the authors looked at the impact of education on cancer mortality rates and found that those with ≤12 years of education had a 2.5 times higher rate of mortality than those with ≥16 years of education. The protective effect of years of education, however, had less effect on mortality among Black individuals with cancer, who continued to have a higher mortality rate compared with White individuals across all educational thresholds. Therefore, the higher cancer incidence rates are multiplicative for Black individuals who have multiple identities associated with worse outcomes.

The finding that Black individuals who are highly educated and still have higher cancer mortality rates brings up two important issues. The first is the devastating and pervasive impact of structural racism and minority status on the health of Black individuals regardless of socioeconomic strides and success. The authors note that these manifest as a lack of access to high-quality services, financial burdens that limit treatment, or biases that prevent screening and preventative efforts, among others.

Implicit bias on a provider and staff level can also contribute to differences in the quality of cancer care being delivered and exacerbate medical mistrust. For example, Enzinger and colleagues evaluated access to opioids among people on Medicare who were dying of cancer (n = 318,549) in the 30 days before death or hospice enrollment.² Compared with White patients, Black and Hispanic patients were less likely to receive any opioid, and, if given, they were more likely to receive a lower daily and a lower total dose. Black men also reportedly were more likely to undergo urine drug screening. According to this report, the disparities were not attenuated by adjustments for socioeconomic factors (e.g., rurality, community-level factors). The second important issue regarding access to opioids is that it emphasizes the importance of applying an intersectional lens to disparities work in order to make progress, which is something that is missing from the current analyses.

Intersectionality was originally used by Kimberlé Crenshaw in Black feminist theory as a critical framework to understand power and oppression that takes into account the multiple social categories one identifies with and interacts through.^{3, 4} In medicine, as shown in these publications, it goes beyond race and includes gender, location, and socioeconomic markers (e.g., education, insurance). For example, take cervical cancer screening rates in the United States. Chen et al. showed that, compared with US-born White women, immigrant women across race and ethnic backgrounds had lower screening rates. Access to care and socioeconomic barriers were noted in the immigrant Hispanic community, but lack of awareness/education about human papillomavirus appeared to be the primary barrier for immigrant women from White and Asian backgrounds.⁵ Both the 2023 ACS report and the article by Chen et al. show that, although important findings are uncovered when any one factor is evaluated in isolation, the real work is addressing what is at the root of those differences, and we cannot effectively intervene to mitigate the disparities.

Another example of the importance using intersectional lenses in cancer disparities work involved sexual and gender minority (SGM; also known as LGBTQ+) individuals. Collection of sexual orientation and gender identity data is largely missing in the databases used in this report (i.e., the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program; the National Program of Cancer Registries; and the National Center for Health Statistics). SGM people are less likely to be offered appropriate cancer screening despite having a higher risk of multiple cancers, including breast, ovarian, pancreatic, and lung. In addition, across the cancer continuum, they receive a lower quality of care, contributing to more anxiety and depression during survivorship, and they even have higher rates of cancer recurrence. Multiple studies indicate worse outcomes for SGM people of color, including in palliative care settings, in which Black and Hispanic SGM patients were two to four times more likely than their White SGM counterparts to report discrimination.⁶ Current recommendations and best practices include collecting sexual orientation and gender identity data,^{7, 8} but current political environments focused on banning gender-affirming care may put this at risk, putting the movement to address SGM disparities to the test.

Also problematic is using race as the primary characteristic around which we design efforts to effectively address cancer disparities; this is inadequate. In part, this is because race is a social construct fundamentally informed by social perceptions rather than by scientific foundation.⁹ Ultimately, it is a subjective descriptor of a phenotype that is a poor substitute for genotype. This point was made in an early onset lung cancer study that included enrolled volunteers (n = 555 self-reported Caucasian/non-Hispanic individuals and n = 191 self-reported Black individuals), all of whom underwent genotyping that included a 13 short tandem repeat locus previously established to characterize individual ancestry.¹⁰ Among the study participants, European ancestry was found to correlate poorly with self-described race, with significant overlap in individual ancestry across Black and White self-described volunteers. Conflating racial differences with biologic differences and inaccurately/incompletely measuring racial and ethnic differences complicates this work.

Fortunately, both national and local programs are emerging to address disparities, and many of them are described by the authors of the 2023 ACS report. Still, much more work is needed. Not only do we have to creatively challenge our sources of descriptive data, data collection, and data accuracy, as indicated above; we also need to include community voices and develop a diverse workforce that reflects all of our surrounding communities.

We cannot effectively address disparities in cancer outcomes in a vacuum. The factors at play are structural, embedded within society over generations. However, we can do our part by ensuring community engagement in our efforts, listening to what those we seek to help tell us are the issues, and helping define the priorities to achieve equity. These factors are all essential. Providing opportunities across diverse populations to explore medicine and oncology early on may help to inspire a diverse workforce. Most of all, engaging with cultural humility from a systems standpoint and holding those who work within it to ethical standards are paramount. The related critical need to address bias in the workforce requires evidence-based interventions that are focused on lasting change that must occur beyond any one mandatory training module. Finally, reflecting on our own beliefs and how they affect our behaviors and attitudes, the care we provide, and the words we write in patient charts and elsewhere, is critical. All of this matters—from the national, to the institutional, to the individual level.

Ultimately, intersectional analyses can us help address the difference between describing disparities and addressing inequities.⁹ Making the effort to start collecting data that accurately reflect the lived experiences of our patients with cancer requires cultural humility and meaningful community engagement. This will allow us to move from describing disparities to developing evidence-based programs for all of our patients to achieve equitable care and, as this ACS study suggests, give everyone an equal chance to survive cancer.

Shail Maingi reports personal fees from Bristol Myers Squibb Company; Gilead Sciences/Gilead Foundation; Lilly USA, LLC; Merck; and Pfizer outside the submitted work. Don S. Dizon reports personal fees by Astra Zeneca, GlaxoSmithKline, Kronos Biotech, and Clovis. He also reports institutional finding by Bristol Myers Squibb. All of this is outside of the submitted work.