Indigenous people are disproportionately overlooked in diagnosing and treating cancer, study finds

A new study in the Journal of the American Medical Association Network adds to the evidence that, if you are a young Indigenous person in America, the health care system is far more likely to fail you if you get sick with cancer.

To learn this, researchers analyzed cancer statistics for more than 290,000 patients between the ages of 15 and 39 from 2004 to 2017. The selected patients had all been diagnosed with at least one of the 10 deadliest cancers, including breast, colon, lung, ovarian and testicular cancers. They then examined disparities in rates of both diagnosis and survival among those patients based on where they fall within America's five federally defined races (Native Hawaiian or other Pacific Islander, American Indian or Alaska Native, Asian, Black and non-Hispanic white).

They discovered there are significant differences when it comes to both getting diagnosed early and ultimately surviving, with white people having the best odds. The rates are especially steep among groups often overlooked in medical research, the Native Hawaiian and Pacific Islander (NHPI) and American Indian or Alaska Native (AIAN) communities.

For example, NHPI patients with melanoma suffer under a 34 percentage point difference in 10-year overall survival rates compared to white melanoma patients. In the same vein, AIAN lung cancer patients suffer under a 15 percentage point difference in 10-year overall survival compared to white patients. The list goes on and on.

"For example, we identified the lowest 10-year overall survival rates were observed among AIAN patients with cancers of the central nervous system, lung, ovary and testis, and among NHPI patients with cancers such as cervix, colon or rectum, sarcoma and melanoma," Dr. Kekoa Taparra, lead author and a resident in radiation oncology at Stanford Health Care, told Salon. "These findings are not just numbers for me; they reflect the lived experiences of my own ʻohana [family] in Hawaiʻi. I’ve witnessed many NHPI patients from my ʻohana, communities in Hawaiʻi, and across the country who have been diagnosed with cancer in this age range."

Taparra's personal story includes his aunty, who was diagnosed with breast cancer "at the age I am today, ultimately dying from her cancer. These data truly underscore the urgent need for targeted research and interventions within these communities."

The study repeatedly underscores that Indigenous communities are consistently underrepresented in medical research about cancer, and Taparra explained that this is in part explainable by the demographics of who is actually included in that research. They were as racially diverse as the cohort being studied.

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"It’s significant to point out that nearly half of the authors who helped contribute to this research are Indigenous scholars, emphasizing the importance of representation in research," Taparra said. "When scholars come from the communities they study, they bring essential perspectives that ensure the data is accurately contextualized, avoiding the pitfalls of academic tourism that often overwrite Indigenous narratives. This diversity of thought fosters a more inclusive and potentially novel approach to research, ensuring that critical issues like the health disparities faced by Indigenous NHPI and AIAN patients receive the attention, funding and policy advocacy they deserve."

As the study states in its conclusion, "Indigenous data inclusion has uncovered racial disparities previously masked by data omission and aggregation, emphasizing the need for consistent inclusion of these federally defined racial categories."

To fix this problem, the authors urge that future health research on such important subjects consistently include NHPI and AIAN populations both as subjects of research and scientists crunching the numbers.

"This would allow for more accurate identification of health disparities and enable the development of targeted interventions," Taparra said. "Moreover, these standards were set over a quarter century ago and remain largely ignored. Our research, which emphasizes the importance of such data, demonstrates that NHPI and AIAN patients experience some of the most significant gaps in 10-year OS [overall survival] rates when compared to other racial groups." 

Taparra also urged "culturally competent healthcare that understands and addresses the unique challenges faced by NHPI and AIAN communities."

This is an ongoing problem and far from the first study to demonstrate racial inequalities in cancer survival rates. The Centers for Disease Control and Prevention (CDC) has detailed the various ways that racism leads to disparities in how marginalized groups are diagnosed with and treated for various types of cancer. Similarly, a 2022 study in the journal Cancer Epidemiology, Biomarkers & Prevention said that there is "abundant evidence" that a number of social factors including systemic racism put racial minorities at a disadvantage in addressing cancer.

"Many observed racial/ethnic disparities in cancer outcomes are avoidable and thus, unjust," the authors wrote. "Structural racism, which contributes to many health disparities, involves the complex interplay of macro-level systems, policies, as well as institutional practices and processes which accumulate over time and result in the unfair advantage of one racial group over another."