By Mingqian Lin, MS (MD 2024), and Yixuan James Zheng (MD 2023)
In the ASCO Connection January 2022 issue, a piece titled “Equity, Diversity, Inclusion in Cancer Care Is Not One Thing, It’s Everything” highlighted ASCO’s 5-year plan for promoting and ensuring equitable research and health care. As future physicians, we felt encouraged by the organization’s open statement of dedication to reducing health inequities faced by vulnerable populations along with detailed plans of action. As Asian Americans, we felt compelled to add our voices to this national call-to-action. It would be a missed opportunity to not specifically and actively acknowledge the health issues faced by the incredibly diverse Asian American, Native Hawaiian, and Pacific Islander (AANHPI) population. We encourage our peers, mentors, and institutions to devote attention to cancer care for AANHPIs, who experience a multitude of barriers to high-quality cancer care across factors including socioeconomic status, health care access, culture, language, and health beliefs and perceptions.
In the wake of the COVID-19 pandemic, AANHPIs have become a target of prejudice and racism in the U.S. From March 2020 to September 2021, over 10,000 hate incidents (verbal harassment, social shunning, physical assault, workforce discrimination, etc.) were reported by AANHPIs to Stop AAPI Hate, a national advocacy organization created in response to the increase in acts of racism and violence against AANHPIs. Among these incidents, 62% were experienced by women. An additional national survey from 2021 revealed that one in five Asian Americans and Pacific Islanders have experienced a hate incident in the past year.1 Unfortunately, violence towards AANHPIs continues even now. The impact of anti-Asian racism undoubtedly has reverberated across our communities, as many AANHPIs from all backgrounds continue to feel fear and general uncertainty about their safety and their place in this country.
While hate incidents against AANHPIs were launched into the national spotlight over the past 2 years, it would be remiss to neglect the fact that racism and discrimination against these populations have long existed throughout U.S. history. To understand health disparities among racial and ethnic minorities in the U.S., one must look at how systemic racism and structural violence contribute to these disparities. Growing up in the U.S., we remember having limited opportunities to learn about AANHPI history. We recall a meager few pages’ worth of text in our history textbooks dedicated to these populations—a failed attempt to capture over 300 years of their history in America. We may not have been aware that, in fact, Filipinos first arrived in America in 1763 as slaves, who jumped ship from the Spanish galleons and fled to the South. While students may have learned how the Gold Rush in 1848 brought an influx of Chinese workers, they might not have known that these workers have been traded for decades as cheap laborers and referred to as “coolies,” many of whom lived in dilapidated conditions. We were made aware of the building of the Transcontinental Railroad in 1865, but we were seldom taught that over 1,200 Chinese laborers died in the process. We were not taught of the mass lynchings and massacres across the West and Northwest by white Europeans and Americans, driving persons of Asian origins towards the Midwest and further East. We were not taught of the 12,000 Hmong who were recruited for the Secret War in Laos, which left 50,000 dead and 120,000 Hmong as refugees. The Chinese Exclusion Act of 1882 and the Japanese internment camps across the U.S. during World War II might have become wider-known tragedies of the Asian diaspora, but to this day, many do not see the lasting sociopolitical impact of these systemic structures, fueling a social tendency of viewing AANHPIs, regardless of their actual national or ancestral origins, as the “other”—the perpetual foreigner.2
Asian American history is vastly underrepresented in American society and education. Native Hawaiians and Pacific Islanders especially face continual erasure in discourse across virtually all disciplines. We reflect upon these histories not only in the hope of raising awareness for our identities, but also to bring forth the invisibility of these populations in health and health care spaces. If, as a society, we have long pushed AANHPIs to the periphery of our attention, how can we move forward to effectively achieve the greater goals of equity, diversity, and inclusion in health?
We attempt to spotlight some of the disparities that AANHPIs face in terms of cancer care and outcomes to bring attention to these issues. Cancer is the leading cause of death among AANHPIs.3Aggregate data across all cancers show that AANHPIs have lower incidence and mortality rates.4 However, for certain cancers such as liver and stomach, incidence and mortality are significantly higher than whites.5 In addition, certain low-incident cancers in the AANHPI community such as melanoma disproportionately have poorer survival rates compared to whites.6 Filipinos seem to have a higher risk of developing thyroid cancer.7
Screening and early detection strongly correlate with better outcomes for many cancers. AANHPIs have lower screening rates for colon cancer, breast cancer, and cervical cancer compared to the general U.S. population.3 Studies have found that despite higher rates of increased cancer information seeking compared to other groups, mammogram and pap smear rates are particularly low among Korean and Vietnamese women compared to those same groups.8Colorectal cancer screening and adherence to recommended colonoscopy are also lower among AANHPIs compared to non-Hispanic whites.9,10 There is a strong need to use creative methods to address gaps in screening and adherence to United States Preventative Services Task Force recommendations among AANHPI origin groups, whose needs may differ across different communities and backgrounds.
The effects of social determinants of health on cancer disparities have been well documented in hematology and oncology research. The root of some of these cancer-related disparities perhaps lies in social inequities that AANHPI face. Despite making up 7% of the American population and being the fastest growing racial or ethnic group in the U.S.,11,12 AANHPIs have a less than proportionate voice in policy making. Just 3% of Congressional representatives identify as AANHPI.13 Existing data may show that AANHPIs, as an aggregate, have high median income. However, more recent disaggregated data illustrate that income inequality has risen most rapidly among AANHPI origin groups compared with any other racial demographic in the U.S, with certain origin groups having among the lowest incomes of all groups in the U.S.14,15 Many AANHPI groups also lack insurance, providing additional barriers to accessing health care.16 Over a third of AANHPIs have limited English proficiency, necessitating the use of language-appropriate services during health care visits and community interventions.17 Additionally, many AANHPIs may not perceive preventive care as a norm, face cultural stigma with cancer, and use traditional and alternative medicines that are frequently unfamiliar to (and judged negatively by) Western health care providers.18 These represent only some of the vast challenges experienced by AANHPIs in cancer care.
Cancer disparities remain an important issue for the AANHPI community. Factors contributing to these inequities are complex. Unfortunately, there are few studies focused on AANHPI populations which prevents a more robust understanding of the true root causes of these disparities and therefore creates potential for improved awareness. One study found that in the past two decades, just 0.17% of the NIH research budget funded clinical research studies focused on AANHPI populations.19 Much of the research efforts are presently championed (and funded) by members from within the AANHPI community, which may suggest a more systemic gap in equitable representation, resource allocation, and professional collaboration. Additionally, studies have consistently found that Asian Americans have much lower participation rates in research than other racial/ethnic groups, including cancer research.20-27 It would therefore be unsurprising that many of these disparities and barriers to cancer care might actually be underreported. Moreover, until recently, published data has grouped all AANHPIs as an aggregate, which silences and overlooks the many inequities experienced by certain communities and origin groups. It is therefore imperative that future research practices critically examine the acquisition and usage of data on AANHPIs, with purposeful disaggregation being an important, meaningful step.
The Asian American, Native Hawaiian, and Pacific Islander population represents people of many different origins who speak a diverse array of languages and have unique cultural backgrounds. We are immigrants, refugees, scholars, and workers. We cope with forms of trauma from the past and the present. We also celebrate our successes and our vibrant heritages. As future physicians and oncology trainees who identify as AANHPIs, we stand with our community and hope to be part of a greater movement towards more equitable, diverse, and inclusive cancer care. AANHPIs have long been an invisible minority in the U.S., and it is time that we create a seat at the table for these communities whose voices have historically been left unheard.
Mr. Lin is a second-year medical student at the Medical College of Wisconsin in Milwaukee and the student director/founder of the Health Advancement for Asian/Pacific Islanders through Education Initiative (HAAPIE), building a curriculum for health trainees on AANHPI health. Prior, he has over 5 years of experience as a patient navigator for patients with cancer at Tufts Medical Center Cancer Center. He aims to go into hematology/oncology, with a clinical and research focus on cancer disparities, quality of care, and health-related quality of life. Disclosure.
Mr. Zheng is a fourth-year medical student at the University of California, San Francisco. He is a former director of the Asian Pacific American Medical Student Association (APAMSA) Cancer Initiative. The views expressed here are his own. Disclosure.
- Yellow Horse AJ, Jeung R, Matriano R. Stop AAPI Hate National Report. March 19, 2020 – September 30, 2021. Available at: https://stopaapihate.org/wp-content/uploads/2021/11/21-SAH-NationalReport2-v2.pdf. Accessed 2022 Feb 28.
- Lee E. The Making of Asian America: A History. Simon and Schuster, 2015.
- Lee RJ, Madan RA, Kim J, et al. Disparities in Cancer Care and the Asian American Population. Oncologist. 2021;26:453-60.
- Islami F, Ward EM, Sung H, et al. Annual Report to the Nation on the Status of Cancer, Part 1: National Cancer Statistics. J Natl Cancer Inst. 2021;113:1648-69.
- Miller BA, Chu KC, Hankey BF, et al. Cancer incidence and mortality patterns among specific Asian and Pacific Islander populations in the U.S. Cancer Causes Control. 2008;19:227-56.
- Zheng YJ, Ho C, Lazar A, et al. Poor melanoma outcomes and survival in Asian American and Pacific Islander patients. J Am Acad Dermatol. 2021;84:1725-7.
- Kus LH, Shah M, Eski S, et al. Thyroid cancer outcomes in Filipino patients. Arch Otolaryngol Head Neck Surg. 2010;136:138-42.
- Jun J. Cancer/health communication and breast/cervical cancer screening among Asian Americans and five Asian ethnic groups. Ethn Health. 2020;25:960-81.
- Ivey SL, Mukherjea A, Patel A, et al. Colorectal Cancer Screening Among South Asians: Focus Group Findings on Attitudes, Knowledge, Barriers and Facilitators. J Health Care Poor Underserved. 2018;29:1416-37.
- Ma GX, Lee M, Beeber M, et al. Community-Clinical Linkage Intervention to Improve Colorectal Cancer Screening Among Underserved Korean Americans. Cancer Health Disparities. 2019;3:e1-e15.
- Budiman A, Ruiz NG. Key facts about Asian Americans, a diverse and growing population. Pew Research Center. 2021 Apr 29. Available at: https://www.pewresearch.org/fact-tank/2021/04/29/key-facts-about-asian-americans/. Accessed 2022 Feb 28.
- Budiman A, Ruiz NG. Asian Americans are the fastest-growing racial or ethnic group in the U.S. Pew Research Center. 2021 Apr 9. Available at: https://www.pewresearch.org/fact-tank/2021/04/09/asian-americans-are-the-fastest-growing-racial-or-ethnic-group-in-the-u-s/. Accessed 2022 Feb 28.
- Schaeffer K. Racial, ethnic diversity increases yet again with the 117th Congress. Pew Research Center. 2021 Jan 28. Available at: https://www.pewresearch.org/fact-tank/2021/01/28/racial-ethnic-diversity-increases-yet-again-with-the-117th-congress/. Accessed 2022 Feb 28.
- Kochhar R, Cilluffo A. Income Inequality in the U.S. Is Rising Most Rapidly Among Asians. Social Demographic Trend Project. Pew Research Center. 2018 Jul 12. Available at: https://www.pewresearch.org/social-trends/2018/07/12/income-inequality-in-the-u-s-is-rising-most-rapidly-among-asians/. Accessed 2022 Feb 28.
- Budiman A, Ruiz NG. Key facts about Asian origin groups in the U.S. Pew Research Center. 2021 April 29. Available at: https://www.pewresearch.org/fact-tank/2021/04/29/key-facts-about-asian-origin-groups-in-the-u-s/. Accessed 2022 Feb 28.
- The Impact of the Affordable Care Act on Asian Indian, Chinese, Filipino, Korean, Pakistani, & Vietnamese Americans. National Council of Asian Pacific Islander Physicians, 2015. Available at: https://www.searac.org/health/the-impact-of-the-affordable-care-act-on-asian-indian-chinese-filipino-korean-pakistani-vietnamese-americans/. Accessed 2022 Feb 28.
- Ramakrishnan K, Ahmad FZ. Language Diversity and English Proficiency. Center for American Progress. 2014 May 27. Available at: https://cdn.americanprogress.org/wp-content/uploads/2014/04/AAPI-LanguageAccess1.pdf. Accessed 2022 Feb 28.
- Lee S, Martinez G, Ma GX, et al. Barriers to health care access in 13 Asian American communities. Am J Health Behav. 2010;34:21-30.
- Ðoàn LN, Takata Y, Sakuma KK, et al. Trends in Clinical Research Including Asian American, Native Hawaiian, and Pacific Islander Participants Funded by the US National Institutes of Health, 1992 to 2018. JAMA Netw Open. 2019;2:e197432.
- Crider KS, Reefhuis J, Woomert A, et al. Racial and ethnic disparity in participation in DNA collection at the Atlanta site of the National Birth Defects Prevention Study. Am J Epidemiol. 2006;164:805-12.
- Cottler LB, McCloskey DJ, Aguilar-Gaxiola S, et al. Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network. Am J Public Health. 2013;103:1685-92.
- Johnstone E, Sandler JR, Addauan-Andersen C, et al. Asian women are less likely to express interest in infertility research. Fertil Steril. 2010;94:1249-53.
- Sharma H, Johnstone EB, Gates E, et al. Asian immigrants to the United States are less likely to donate cryopreserved embryos for research use. Fertil Steril. 2011;95:1672-6.
- Giarelli E, Bruner DW, Nguyen E, et al. Research participation among Asian American women at risk for cervical cancer: exploratory pilot of barriers and enhancers. J Immigr Minor Health. 2011;13:1055-68.
- Ma GX, Seals B, Tan Y, et al. Increasing Asian American participation in clinical trials by addressing community concerns. Clin Trials. 2014;11:328-35.
- Talaulikar VS, Hussain S, Perera A, et al. Low participation rates amongst Asian women: implications for research in reproductive medicine. Eur J Obstet Gynecol Reprod Biol. 2014;174:1-4.
- Pinsky PF, Ford M, Gamito E, et al. Enrollment of racial and ethnic minorities in the Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial. J Natl Med Assoc. 2008;100:291-8.