The invisibility of Asian Americans in COVID-19 data, reporting, and relief

Short proposal:

Without proper recognition of the dual pandemics of COVID-19 and racism that Asian Americans and other racial minorities are facing, we cannot successfully address structural barriers to healthcare. The target article did not address Asian Americans in its discussion of COVID-19 health disparities or structural racism. Disaggregation of Asian American data is necessary to develop appropriate public health programs and policy efforts to mitigate the impact of COVID-19 on these communities.

Open Peer Commentary:

Without proper recognition of the dual pandemics of COVID-19 and racism that Asian Americans and other racial minorities in the United States are facing, we cannot successfully address structural barriers to healthcare. The target article omitted Asian Americans from its discussion of COVID-19 health disparities or structural racism, perhaps in keeping with the NIH not recognizing Asian Americans as an underrepresented group. However, the structural racism and health disparities faced by Asian Americans cannot be addressed unless first, Asians are acknowledged as facing such disparities, and second, that “Asian American” is an oversimplified label for a heterogeneous group. We must unmask invisible Asian communities and improve data collection and reporting for subgroups.

The COVID-19 racial disparities data are flawed, with dire consequences. Asian Americans have been engaged in a twenty-five-year-old advocacy battle to “disaggregate data” and distinguish the unique challenges faced by different Asian subgroups. Disaggregated data divides populations into detailed sub-categories and can reveal inequities that aggregated data cannot. Efforts to disaggregate health data for Asian Americans have shown substantial subgroup variation in mortality patterns, insurance coverage, health service utilization, health conditions, and health outcomes.¹

As COVID-19 cases spiked across the country and people of color emerged as the hardest hit members of society, data for Asian Americans in general were missing. Early reports on COVID-19 health disparities only reported categories that included “White” “Black” “Hispanic” and “Other”. Efforts have been made to collect more data on outcomes for Asian Americans, but they still remain extremely limited and are usually presented as a single Asian category. This aggregation of data is particularly harmful because it disguises Asian subgroup disparities and leads to inaccurate conclusions about the needs for interventions and research. What we do know is this:

1. Chinese Americans who were COVID-19 positive experienced significantly higher mortality rates for compared to White Americans, especially in large urban areas such a New York City and San Francisco.^2,3

2. Asian Americans also have increased vulnerability to COVID-19 due to higher representation in specific labor sectors. For example, nearly a third of the nurses who have died of coronavirus in the US are Filipino, even though Filipino nurses make up just 4% of the nursing population nationwide.⁴

3. The decades old “model minority myth” is alive and well, and it has caused segments of the Asian American community to be overlooked and ignored when it comes to social services for housing, employment, and health especially during the pandemic.^5,6

4. Violence towards Asian Americans has spiked and resulted in fear of leaving the house to get COVID-19 testing and underreporting of symptoms.⁷ Especially for older Asian populations, fear of discrimination and sheltering in place has prevented people from seeking healthcare services for COVID-19 symptoms as well other pre-existing health conditions. The only mention of Asian Americans in the target article was in reference to COVID-19-related discrimination, however the health implications of this discrimination were left out.

Sabatello et al. critique current practice and suggest ways to address structural racism in genetics. We argue that in precision health research Asian Americans are woefully miscategorized, misrepresented, and underfunded. For example, NIH does not consider Asian Americans to be an underrepresented racial group in the medical research workforce⁸ and thus have been “de-minoritized” or no longer defined as a minority.

Historically, Asian Americans, like other exploited racial groups, have been distrustful of participating in health research, resulting in underrepresentation of this population in scientific studies. An analysis of six diverse Clinical and Translational Award (CTSA) sites found that out of all racial groups, Asian Americans were the most unwilling to participate in health research studies.⁹ This can be attributed to both lack of trust in research as well as significant language barriers, which must be addressed in future research to improve representativeness and generalizability.

In normal times, the lack of data for Asian American groups is a problem of representation. During a pandemic, it means that resources and messages will not be targeted to the specific needs of these communities.

Inclusion and disaggregation of Asian American data is necessary to develop appropriate public health programs and policy efforts to mitigate the impact of COVID-19 on diverse Asian American communities. A recent analysis found that the proportion of the total National Institutes of Health (NIH) budget spent on Asian American and Pacific Islander-focused clinical research projects was only 0.18% after 2000.¹⁰ Without overt direction from federal entities and dedicated funds to increase diversity in research populations, research may continue to languish for Asian American populations.

In order to remedy these current failings, Asian American community members and Asian American health research experts must be consulted when developing programs for COVID-19 testing, contact tracing, surveillance, and vaccine distribution. Resources must be allocated to address linguistic barriers and trust building activities between researchers and participants must be prioritized. These arguments for inclusion and data disaggregation are in line with the target article’s recommendation for culturally competent community engagement in COVID-19 research and relief. However, Asian Americans have been consistently left out of the conversation on “fair and equitable benefit-sharing”. For example, in early September 2020, the National Academics of Science and Medicine circulated a draft preliminary framework for COVID-19 vaccine allocation and sought public comments on the document. The words “Asian” “Pacific” “Islanders” “Hawaiian” did not appear in the initial 114-page draft, yet terms such as “Black” appeared six times and “Latinx or Hispanic” appeared eight times in the document. Asian American advocacy groups wrote letters and participated in the listening sessions to campaign for the inclusion of Asian American groups in the next draft of this document.

If a Truth and Reconciliation Committee is to be formed as part of a new government structure, it must include members of multiple Asian American and Pacific Islander subgroups. Asian American invisibility has persisted far too long. It is time we recognize the health disparities this uniquely heterogeneous group has faced from COVID-19 and include Asian Americans in efforts to address structural racism during the pandemic and beyond.