Portside

They have roots in 50 countries that cover more than half of the globe’s surface. They make up more than 60% of the world’s population. They speak more than 100 different languages. Yet in medical research and public health in the United States, people with Asian ancestry are almost always grouped into a single racial category.

Nearly 25 million Americans — from Hmong to Laotians, and Koreans to Indonesians — have been given the same label by the U.S. government despite coming from vastly different cultural, linguistic, and genetic backgrounds. The Centers for Disease Control and Prevention, the National Institutes of Health, academic and pharmaceutical researchers, and disease advocacy groups all use the broad category of Asian in studies and to make funding and policy decisions.
Native Hawaiians and Pacific Islanders are also still often lumped into the Asian category though federal standards clearly state they should be separate.

Grouping such a vast array of humans in one category is not only “egregious,” in the words of Princeton sociologist and migration expert Alejandro Portes — “It’s even worse than Hispanic,” he said at a seminar his university held examining the problem last year. “At least Hispanics share a language.” It also turns out that it’s harmful to people’s health, complicating efforts to identify and combat health disparities, academics and health experts told STAT.

The main problem is that when this highly diverse pool of Americans is blended together in widely used metrics, they seem to be doing very well — better than white Americans in important categories such as income, educational achievement, access to health insurance, and longevity. Data from 2021 show overall life expectancy for Asian Americans as a group is 83.5 years, compared with 76.1 for white Americans.

But separate out subgroups of Asian Americans and outcomes are far poorer, according to research findings now starting to trickle in. In a 2020 study, Ninez Ponce, who directs UCLA’s Center for Health Policy Research, found at least one disparity that was disguised by aggregation in every Asian subgroup she and her colleagues examined.

Other research is similarly unearthing new disparities by collecting and disaggregating data on Asian Americans — when they can be found or collected. For example:

Liver cancer is more than twice as common among Asian Americans than white Americans, but the rates for Laotian Americans are more than seven times higher than white Americans.
The cervical cancer rate for Hmong women is three times that of the rate for all Asian Americans (and four times that of white women).
Diabetes rates are highest for Filipino and Asian Indian Americans.

“You cannot have health equity without data equity,” said Ponce, who also leads the California Health Interview Survey, which collects data on more than 20 different Asian racial and ethnic subgroups. “If people are not seen in the data, you can have lofty health equity goals but have blind spots that harm those populations.”

The Covid-19 pandemic, with its disproportionate death toll in certain groups, including Filipinos and Pacific Islanders, showed how important it is to disaggregate data, but for Ponce that’s just one of many issues that need to be addressed. “It’s not just about Covid. It’s about asthma, diabetes, and other chronic conditions,” she said.

Finding these health disparities is not surprising, given large socioeconomic differences among Asian subgroups. Take educational attainment. While nearly 75% of Taiwanese Americans have a bachelor’s degree, the number is less than 20% for those who are Hmong, Cambodian, or Laotian. Asian Indians far outpace the nation’s median income of about $70,000, earning on average nearly $120,000 annually. That’s more than twice the average income earned by people in more than a dozen other Asian subgroups, including people who are Thai, Nepalese, and Mongolian.

Because Asians in groups at the top earn so much more than those at the bottom, averaging makes it look like many other groups are doing far better than they are. The same is true for health outcomes, which makes sense because health is so clearly tied to income. But studies that break down health data into different Asian subgroups remain rare — leaving many health disparities masked and ignored by those who might call for or fund improvements.

“We know if we don’t exist in the data, we often don’t exist in the eyes of policymakers or those with resources,” said Richard Calvin Chang, data analytics director of the Native Hawaiian and Pacific Islander Data Policy Lab at UCLA’s Center for Health Policy Research.

One reason for the lack of good data collection, said Stella Yi, a cardiovascular epidemiologist and associate professor of population health at the NYU Grossman School of Medicine, is pervasive stereotyping of Asians, including as a “model minority” that’s doing so well it doesn’t merit resources or attention. Even some Asian American groups have pushed back against disaggregation, however, fearing their political clout could be reduced if they were broken into smaller groups, said Yi.

This leads to widespread exclusion and invisibility — people who “go missing” in the data and whose health issues are rarely noticed or addressed, she said. Not surprisingly, these are often people with the least English proficiency, said Yi, noting that most health surveys are only conducted in English or Spanish.

It’s a problem that dates back to the very beginning of U.S. government programs to address unequal health care. The 1985 Heckler Report, which launched the effort, concluded that Asians — largely because they were all clumped into one group — were “healthier than all racial/ethnic groups in the United States.”

One need only look at the National Institutes of Health to see the continuing impact of Asians’ invisibility: Between 1992 and 2018 just 0.17% of the NIH budget — one-fifth of one percent — was spent on research focused on Asian Americans, Native Hawaiians, or Pacific Islanders despite this being the country’s fastest-growing ethnic group.

In a statement, NIH officials said they were committed to improving the health of Asian communities but emphasized they support “research that benefits individuals of all races and ethnicities” and said that most research the institutes conduct includes all at-risk populations for a disease or condition. They added that numerous initiatives funded since 2021 focus on Asians, as well as Native Hawaiians and Pacific Islanders.

Still, “the body of data that’s out there doesn’t represent the country,” said Yi. “And the people not represented are the most vulnerable.” Work by Yi and her colleagues has shown that contrary to being wealthy, many people in Asian subgroups in New York City, including Bangladeshi and Nepali Americans, had difficulty accessing food during the pandemic.

Outcomes for Asians are typically not broken out in public health and clinical research in the U.S. for myriad reasons. There’s widespread confusion among researchers about government standards on race reporting. Data on Asian subgroups can also be harder and more expensive to collect due to language issues and mistrust. And even if data are collected from different groups, analyzing smaller subgroups in studies gives the findings less statistical power and may, if groups are very small, allow individual respondents to be identifiable.

This can result in health care protocols that do not appropriately treat Asian Americans. One glaring example: Commonly used medicines from antidepressants to hormone replacement therapy to gout treatments come with a much higher risk of side effects in Asians, including skin rashes so dangerous they can require hospitalization. Another is the fact that it took nearly a decade of activism from Asian and Pacific Islander physicians before the body mass index threshold for diabetes screening was lowered for Asian Americans, who can get the disease at younger ages, and with far less body fat, than other groups.

Data aggregation also masks what is killing people. Data when all Asians are clumped together show cancer is the leading cause of death. But when one study broke out data for the six largest Asian subgroups, deaths due to heart disease for Indian Asians were twice as common as deaths due to cancer. What are the leading causes of death for other, smaller subgroups? No one really seems to know. The data are just not there.

Such exclusion can feel dispiriting to people who come from groups that have been colonized, lost their lands, or been forced to become refugees, say advocates for disaggregating data. To many, the collection and use of data is an act of power that can lead to further erasure. “This isn’t just missed opportunity. It is systemic racism,” wrote Tina J. Kauh, a program officer at the Robert Wood Johnson Foundation, which is spearheading an effort to improve health data collection, with data disaggregation a major focus.

Calls to disaggregate data for Asian Americans date back to the 1980s, but progress has been plodding, bogged down in contentious debates over whom to include in this group, and what to call them.

When it was coined by two Berkeley graduate students in 1968, the term Asian American was seen as somewhat radical — but it was a far better term than “Oriental,” which had been used in everyday language and federal documents for decades. In 1977, the Office of Management and Budget, which sets standards on race and ethnicity for all federal reporting including the Census Bureau, NIH, and CDC, adopted the term “Asian or Pacific Islander,” a decision that worried Pacific Islanders who feared getting lost in the data.

Twenty years later, the OMB split the group into two: Asian, and Native Hawaiian or Pacific Islander. The OMB standards are a “minimum,” meaning that more specificity and disaggregation of Asian subgroups is welcomed, but Ponce said many researchers remain unclear about the OMB standard and whether it is a mandate or simply a guideline. “It’s not promoted that this is the floor and specificity is to be encouraged,” she said.

OMB officials in 2016 acknowledged that the minimum categories ”are often misinterpreted as the only permissible reporting categories.” An OMB revision being studied, which seeks to add a category of “Middle Eastern or North African” among other changes, is also examining whether “guidance for the collection and reporting of race and ethnicity data can be improved.”

In the submissions Ponce reviews as an associate editor at JAMA Health Forum, “a lot of stuff is still white vs. non-white,” she said. “When I interrogate the authors, they say the other groups were so small, we had to add them up.”

One analysis of 76 studies focused on Asian health found most concentrated on larger subgroups, Americans who were of Chinese, Japanese, or Filipino descent; people who were of Indonesian, Burmese or Malaysian descent were included in just one or two. Though disaggregating data for Asians has been a priority of the Department of Health and Human Services for two decades, one-third of surveys conducted by the agency do not break out data for Asian subgroups.

Many studies also blend data from Pacific Islanders and Asians into one group, which obscures health outcomes of Pacific Islanders that are generally far worse than Asians as a whole. For example, the 2018 infant mortality rate for Native Hawaiians/Pacific Islanders was twice as high as for white babies, and also higher than Asian infants’ death rate.

If you sift through the scientific literature, these categories are used in a way that’s fast and loose — sometimes Asians are added to other racial groups and labeled “other,” sometimes Asian subgroups are split, and sometimes they are not. “It’s a mess,” said Yi. “Sometimes it’s AA, sometimes it’s PI, sometimes it’s Asian-PI.”

That was the case in a major NIH-funded analysis of trends in life expectancy published last year in the Lancet, which aggregated Pacific Islanders with Asians — something specifically against OMB guidelines. That meant the study masked poor Pacific Islander life expectancy, said Kekoa Taparra, a Native Hawaiian resident in radiation oncology and a postdoctoral medical fellow at Stanford University who has published a stream of papers showing lower cancer screening and survival rates for Native Hawaiians and other Pacific Islanders.

In an editorial accompanying the research, Taparra said the authors’ “systemic erasure” of known disparities in Native Hawaiian and Pacific Islander populations obscured the poor health realities of these groups — which are closer to that of other Indigenous people in the U.S. than to Asians — and further marginalized them.

“It’s not hard,” he says of conducting research on smaller populations like Pacific Islanders. National databases often have enough people in them for analysis, and institutions studying their own populations can boost sample sizes by using data collected over longer time periods or pooling data from different locations, he said.

Researchers should not, he added, use the term AAPI when they are not including Pacific Islanders in their work, and if they do study them, should include researchers and voices from those communities in the work. “We exist,” he said. “We’re here.”

The push to examine disparities hidden beneath the all-inclusive Asian category is gaining momentum, especially with more interest and funding that’s flowed in the wake of increased Asian hate incidents that occurred during the Covid pandemic.

In 2016, California instituted a bill that requires the state’s health department to break down data about Asian Americans into subgroups. Last year, New York state did the same. New York City’s Department of Health and Mental Hygiene recently released a groundbreaking report on Asian health with many subgroups; the report’s executive summary was translated into 11 languages.

In academic research, the multi-university MASALA study found one reason South Asians may have higher rates of cardiovascular disease is because they store fat differently. After a push to recruit lower-income subjects, researchers also uncovered important subgroup differences, including that Bangladeshis have higher rates of diabetes and high blood pressure than Pakistanis and Indians.

The NIH, led by the National Heart, Lung, and Blood Institute, last month launched a nearly $40 million, seven-year study to examine the health of Asians Americans, Native Hawaiians, and Pacific Islanders.

Asian data disaggregation has been called a priority by five White House administrations, dating back to President Bill Clinton, but the issue was more recently ramped up under President Barack Obama. It’s work the Biden administration is continuing (under the unwieldy acronym of WHIAANHPI) by establishing an Equitable Data Working Group that last year specifically called for the government to further disaggregate data and put out numerous recommendations on how to do so.

Those working on these issues say there is plenty of room to do better, and good examples of how to do so.

Ponce’s California Health Interview Survey is conducted in English, Spanish, Mandarin, Cantonese, Korean, Japanese, Vietnamese, and Tagalog. “I don’t think this is a huge lift,” she said, though it does require more money to oversample smaller groups by using geographic and surname targeting to get enough responses. “It’s not cheap, but people shouldn’t assume it’s cost-prohibitive,” she said.

Oregon, she notes, disaggregates data not just by racial and ethnic subgroup but also by language and disability.

It’s important, notes Yi, not to simply add more categories and do nothing else. “You can’t just say, ‘Oh we changed the form. Isn’t it beautiful? Now you can share all your info with us,’” she said, because many communities have both language barriers and trust issues that inhibit their sharing of data.

Sometimes the best path is to let communities gather their own data. That’s what the Samoan Community Development Center in San Francisco did, hiring community members to conduct a community needs survey. “Every researcher was NHPI,” said Tupou Latukefu, a program coordinator at the center who oversaw the effort and admitted that the group started out quite daunted. “We were just a group of people who didn’t feel qualified to do research.”

But they succeeded in reaching a community that many professional researchers have not been able to connect with. Through a series of events that included storytelling, food, and cultural performances, the group collected survey responses from 365 youth, young adults, patients, caregivers, community leaders, and service providers that enabled them to create a list of precise recommendations, including more academic and mental health support for Pacific Islanders, and programs focused on violence prevention and grief counseling.

“We could have hired a team from Stanford or UCSF,” said Latukefu. “But we really wanted this research to be done by us.”

This is part of a series of articles exploring racism in health and medicine that is funded by a grant from the Commonwealth Fund.