The United States recently passed a grim COVID-19 milestone: in February, the country recorded over one million “excess deaths” since the pandemic’s start. Excess deaths refers to those greater than would be expected within a given period of time based on previous years’ data, and many experts use this as an indicator of COVID-19’s “true death toll” because it counts those whose deaths are both directly and indirectly due to the pandemic. COVID-19 has weighed particularly heavily on many communities of color—including on Asian Americans who have endured both loss of life due to the virus itself, as well as a surge in racial violence exacerbated by anti-Asian rhetoric. But according to community advocates, the specific ways Asian American communities have been negatively impacted by the pandemic have been rendered invisible by the lack of disaggregated data that are necessary to reveal, properly understand, and address those burdens. 

“The pandemic has really exposed the vulnerability of Asian American and Pacific Islander (AAPI) communities,” said Lakshmi Gandhi, communications and outreach coordinator for the New York-based Coalition for Asian American Children and Families (CACF). “The last two years have really shown that AAPIs need to be seen and we aren’t getting the resources we need.”

The Asian American community represents over 30 distinct ethnic groups who are mostly concentrated in the nation’s urban centers. Yet, most reported data for COVID-19 lump together Asian Americans by ethnicity and geography in a way that masks important regional and subgroup-specific impacts. For example, the Centers for Disease Control (CDC) reports on its website that Asian Americans are least likely of any racial group to be hospitalized for or die of COVID-19. Yet, this statistic—which is based on nationally aggregated reports—fails to provide a full picture of COVID-19’s effect on Asian Americans. 

“The health space is definitely where data equity should be a priority and can be immediately impactful,” said Lloyd Feng, Policy Coordinator at CACF. One of CACF’s partners is New York University’s Center for Asian American Health, which recently co-authored a study specifically examining the impact of COVID-19 on Asian American communities in New York City. 

That study, as well as work by other groups, shows that higher-quality Asian American and Pacific Islander health data—including data disaggregated by ethnicity and other factors—are powerful in helping to identify vulnerable populations under COVID-19. When this is done, important nuances on the COVID-19 health burden in the Asian American community—previously invisible when data are left aggregated—come into sharp focus. 

It’s all in the details

National COVID-19 data are frustratingly inadequate in their assessment of the pandemic’s impact on Asian American communities. One problem relates to how causes of death are differently identified and reported across racial and ethnic groups. According to a study published in 2020 by The Marshall Project, although the CDC reports a lower official mortality rate for Asian Americans due to COVID-19 than for other groups, there were actually 35% more excess deaths among Asian Americans in 2020 compared to previous years—it’s just that fewer of those excess deaths were officially linked to COVID-19. In fact, Asian Americans have the second-highest excess death rate among all racial communities, suggesting that there’s a greater number of misclassified COVID-19 deaths for Asian Americans—perhaps due to a lack of accessible testing for Asian Americans, or other deficiencies. 

“With this new data, Asian Americans join Blacks and Hispanics among the hardest-hit communities,” wrote the authors.   

This certainly seems to be true in California and other parts of the country. In a study published in Health Affairs, the case fatality rate was 8.4% for Asian Americans compared to 2.6% in the overall population and was as high as 10% in areas with large Asian American populations such as Los Angeles. This disparity was further confirmed by several other studies focused either nationally or on specific locales. For example, a large nationwide retrospective assessment of digital medical records found that although Asian Americans comprise 3% of COVID19 cases, they have the highest case fatality rate – 1.5% – among any racial group.  

“Across the country, a high Asian American case fatality has emerged as another health disparity from COVID-19 impacting a minority population,” said the authors of the Health Affairs study. 

They argue that one major challenge in studying the impact of COVID-19 on Asian Americans is the lack of data standardization. Different healthcare entities will report data for Asian Americans and Pacific Islanders either separately, together, or not at all—and very few voluntarily disaggregate those data by ethnicity or Asian national origin.

“The lack of data and reporting consistency hinders efforts to recognize, evaluate, and address disparities,” they wrote.

In the New York University study published this month in Public Health Reports, researchers were able to perform a limited disaggregation of Asian American patient data along ethnic lines. They examined data for over 85,000 patients between March and May 2020, including nearly 10,000 Asian Americans. In stark contrast to their city-wide demographics, researchers found that nearly half of Asian American COVID-19 patients in this period were South Asian American, while 22% were Chinese American. Although overall positivity and hospitalization rates were similar across racial and ethnic groups, disaggregation of Asian American data revealed shocking statistics. South Asian Americans had the second-highest rate of receiving a positive COVID-19 test and being hospitalized for severe symptoms, while the mortality rate for Chinese Americans was found to be 35.7%, the highest among all racial or ethnic groups studied.

“Our finding that Chinese American patients had the highest mortality rate of all racial and ethnic groups and the highest odds of death is concerning, and this elevated burden was revealed only when the overall Asian race category was disaggregated into ethnic subgroups,” wrote the researchers in their paper. 

They speculate that more disaggregated data will further reveal the hidden burden of COVID-19 among Asian Americans, and that such studies are needed to encourage the implementation of targeted public health policies to improve testing, isolation, early care, and vaccination to help mitigate the spread of COVID-19 in these communities. Other studies suggest that the COVID-19 case fatality rate is also especially high among Filipinx Americans.

Treating Asian Americans as a monolith erases important details

Researchers note that the current lack of standardized and disaggregated data makes it difficult to understand why the case fatality rate is so high among Asian Americans. One possibility is that public COVID-19 testing initiatives have not successfully penetrated Asian American communities due to a lack of policy focus, resulting in disproportionately lower rates of early testing. This may be further compounded by high rates of limited English proficiency among many Asian Americans, as well as relatively lower rates of health insurance coverage

Asian Americans may also be concentrated in frontline jobs—including nursing, food manufacturing, and service industries—which put them at greater risk of COVID-19 exposure. Filipinx Americans, for example, make up about 4% of the nation’s nurses but represent nearly one-third of the nursing workforce’s COVID-related deaths. In California, these statistics are particularly stark: 70% of nurses who have died in the state are Filipinx. Experts speculate that this may be because Filipinx nurses tend to work in higher-risk roles such as emergency medicine or the intensive care unit, where they have been more likely to come into contact with COVID-19 patients.

This heightened risk came into stark focus early in the pandemic when 61-year-old Celia Marcos, a charge nurse at Hollywood Presbyterian Medical Center, rushed to the aid of a COVID-19 patient in respiratory distress. Marcos, who had worked for 16 years at the hospital, performed CPR on the patient even though both were only wearing thin paper surgical masks.  At the time, frontline workers were stressed to the breaking point by hospitals overwhelmed with COVID-19 patients, coupled with nationwide shortages of personal protective equipment. Indeed, for the entire time that Marcos was saving her patient, she was not wearing an N95 mask—allegedly because they were not available to her—that might have protected her from airborne SARS-CoV2 viral particles. 

Two weeks after she successfully resuscitated her patient, Marcos died of COVID-19. She was remembered as a calming presence by her co-workers and was often called “ate”—meaning “big sister” in Tagalog—by other Filipinx nurses. Yet, stories like Marcos’, which describe the specific and devastating impact of COVID19 on the Filipinx community, are too often overlooked.

“It’s just too painful for everybody, what happened to her,” said one of her colleagues in an interview with the L.A. Times.

The racial trauma of the COVID19 pandemic

Beyond COVID-19’s immediate health impact, the pandemic has had a broad and disproportionate economic impact on the Asian American community. Asian Americans have been targeted by overwhelming racism over the last two years, thanks to how COVID-19 has been distinctly racialized leading to stigma against Asian American people. 

“This outbreak has transformed into not only a physical but also an ideological pandemic, specifically in the forms of inter/trans-national racism, xenophobia, and macro-/micro-aggression against the Asian body,” observed Keisuke Kimura in an essay exploring the impact of COVID-19 on the Asian American psyche.

The COVID-19 pandemic is not the first time that disease racialization has led to overt racism against Asian Americans. Anti-Asian epidemic narratives defined some of the earliest mistreatment of Asian American immigrants in the U.S., and more recently in the 2003 SARS outbreak, racist misassociation of the disease with the Asian body led to widespread anti-Asian harassment—including boycotts of Asian-owned small businesses—in the U.S. and Canada. 

Just as occurred under SARS, Asian-owned businesses were more likely to shutter under COVID-19, and fewer were able to secure a small business loan under the Paycheck Protection Program that was designed to keep small businesses afloat. The Biden Administration later reformed the program to try and address this disparity among Asian-owned small businesses. 

Also, like with SARS, the closing of Asian-owned small businesses is just one symptom of the rise in anti-Asian racism that has led to a dramatic increase in anti-Asian hate incidents and racial violence over the last two years. Community-led organization Stop AAPI Hate has received over 10,000 reports of anti-Asian hate since the pandemic’s start, including over 1,500 reports of physical assault and over 1,000 reports of civil rights violations such as workplace discrimination and refusal of service. Disaggregation of these data by ethnicity reveals that more than 40% of anti-Asian hate incidents targeted Chinese Americans.

In a separate survey, nearly 60% of Asian Americans said that anti-Asian racism has made them feel less safe in public. This has had a profound impact on the Asian American psyche—one-third of Asian Americans say that their mental health has worsened under COVID-19, and 58% of Asian Americans report that anti-Asian racism has had a negative impact on their mental health. Moreover, Asian Americans’ heightened fear for their own safety may also contribute to the relatively lower rates of COVID-19 hospitalization among Asian Americans, even though in New York City, Chinese and South Asian Americans were being admitted with more severe symptoms

Acute impacts of the COVID-19 pandemic (and associated anti-Asian racism) layer onto pre-existing disparities in Asian American healthcare access: Prior to 2012, nearly 20% of Asian Americans lacked health insurance. Since the passage of the Affordable Care Act, the healthcare coverage gap between Asian Americans and whites has closed, but when these data are disaggregated, it is clear that some ethnic groups remain uninsured or underinsured. For example, Korean Americans and Vietnamese Americans are twice as likely to lack health insurance compared to Indian Americans. In addition, one-third of Asian Americans are also English-language limited, which may further challenge their interactions with the American healthcare system and their efforts to receive quality healthcare: in a 2004 survey, Asian Americans reported greater difficulties communicating with—and being listened to by—their doctor, perhaps fueling the lower rates among Asian Americans of having a primary care physician or seeking medical care for early symptoms of illness.

Community activists emphasize that having better data that accurately reflects the diversity of the Asian American community is key to COVID-19 recovery efforts in places like New York City and around the country because they not only help to identify how different communities experienced the pandemic but can also guide public policy efforts to where they are most needed—both with regard to COVID and to address chronic socioeconomic and medical inaccessibility. While the push to disaggregate state and federal health data for Asian Americans is still only starting to become broader policy in states like New York and California, Feng hopes that data disaggregation will become common practice so that public policy can one day be focused on identifying how specific communities are struggling and can help develop targeted interventions to meet the needs of those underserved populations during a public health crisis like COVID-19. 

“Disaggregated data is beneficial for everybody,” said Feng. “Knowing who you live with and how they’re doing is critical to building New York City [and elsewhere] back better.”

Jenn is a proud Asian American feminist, scientist and nerd who currently blogs at Reappropriate.co, one of the web’s oldest AAPI feminist and race activist blogs. Follow her on Twitter @Reappropriate.