n October 2020, well into the COVID-19 pandemic, the National Academies of Sciences, Engineering, and Medicine (NASEM) published a consensus report that offered a framework for how vaccines—still in development at that time—should be distributed equitably across the US.
Aiming to address health disparities, the report emphasized the need to prioritize racial and ethnic groups that had been disproportionately affected by the pandemic. It mentioned American Indian and Alaska Native, Black, Hispanic or Latinx, and Native Hawaiian and Pacific Islander communities. But Asian American communities were absent in the conversation.
The report minimized the toll Asian American groups had experienced, said Stella Yi, MPH, PhD, a cardiovascular epidemiologist at the New York University School of Medicine. “It was terrifying,” Yi told JAMA in an interview. Community partners were trying to allocate funds to various resources based on the report. “But Asian Americans were not on it,” Yi said.
The report contradicted the experiences of Yi and several other researchers who had witnessed the pandemic’s effects on Asian American people, a group that includes 24 million individuals.
A year later, a November 2021 review would cite data from the US Centers for Disease Control and Prevention (CDC) that quantified the disparities that Yi and her colleagues had seen and experienced firsthand: in 2020, the Asian American population experienced double the percentage of deaths due to COVID-19 than the White population and as much as a 53% higher case-fatality rate. Although their smaller population meant that the absolute numbers of excess deaths were fewer among Asian American people than other groups, they experienced 37% more overall deaths than usual—an increase second only to a 53.6% jump among the Hispanic US population.
So why weren’t Asian American people included in the NASEM framework for fair COVID-19 vaccine allocation?
“It’s all about being invisible, being lost in aggregated data,” Alka Kanaya, MD, a clinical researcher at the University of California, San Francisco, said in an interview.
For decades, US health data have been divided by demographic groups defined by the federal Office of Management and Budget (OMB), Yi explained. But grouping people into categories such as “Asian American” or “Black” masks a multitude of social, economic, and cultural circumstances that drive health outcomes, she and others say. Health data on Asian American people are often dramatically skewed by a single subcommunity that fares far better than others, perpetuating the “model minority” myth for the group as a whole. As a result, experts say researchers and policymakers have scant information on health inequities among Asian American subgroups or, critically, where resources are needed.
This data gap is not restricted to COVID-19. Across cancer, heart disease, diabetes, and a slew of other health conditions, the way data are gathered and made available renders invisible the health risks and outcomes experienced by different Asian American subgroups, which are often lumped together as a single racial and ethnic category, Kanaya explained. What’s more, information from the Native Hawaiian and Pacific Islander population is often placed in the same pool even though the federal government recognizes this as a distinct group.
Experts say the aggregation obscures the diversity and health needs of Asian American people.
And although the past decade has seen advances, thanks in large part to the efforts of researchers and clinicians who belong to these communities, there’s much more work to be done.