[ 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.]
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‘ASIAN AMERICAN’ CATEGORY OBSCURES HEALTH DISPARITIES  
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Usha Lee McFarling
November 21, 2023
Stat
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_ 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. _

, Thumỹ Phan

 

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.

* asian-americans
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* Racism
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* Healthcare
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