Why the Asian American Covid data picture is so incomplete (NBC News)

[Link to original NBC News article by Agnes Constante]

In the seven months of the Covid-19 pandemic, good data have yet to emerge showing how many Asian Americans and Pacific Islanders have contracted or died from the disease and how the group’s death rate compares to those of other racial and ethnic groups in the U.S.

Ideally, each county in the country would collect data for cause of death by race, experts like Karthick Ramakrishnan, director of the research firm AAPI Data, say. But because that’s not the case, understanding the virus’s impact on the community requires piecing together a variety of statistics that illustrate the impact of the disease in contrasting ways.

For instance, data from the Centers for Disease Control and Prevention show that the rates of Covid-19 cases, hospitalizations and deaths among Asian Americans are similar to those of whites. Data from the American Public Media Research Lab similarlyshow that Asian Americans, along with whites, have the lowest Covid-19 death rates in the country.

Meanwhile, an analysis by The Associated Press and the nonprofit news organization The Marshall Project suggests that Asian Americans have been one of the racial groups hit hardest by the disease. The study found that through July, “excess deaths” among Asian Americans — the number of deaths above the average for a particular time period, which many use to estimate deaths from Covid-19 — have increased by 35 percent, the biggest increase among racial groups after Hispanic Americans.

Localized and disaggregated data also paint another picture. One report highlights that Asian Americans account for almost half of Covid-19 deaths in San Francisco. And in California and Hawaii, Pacific Islanders are shown to have the highest death rate of any racial group.

Undertesting and possible reasons

These data point to the likelihood of undertesting in the community and the need for better collection of public health data, community leaders and health experts say.

Jeffrey Caballero, executive director of the Association of Asian Pacific Community Health Organizations, said the high mortality rates are one indicator.

“When you have a disproportionate mortality rate, that usually translates to underscreening or tells you the community has a predisposition of higher risk for the disease,” he said, adding that the organization hasn’t seen such disproportionate mortality rates in Asian countries, leading it to suspect that the high rates are linked to underscreening.

There are several reasons the AAPI community may be undertested.

Ramakrishnan said the stigmatization of Asian Americans — especially those who look Chinese — as being the source of the coronavirus helps make some reluctant to seek care.

“That has had a chilling effect in the community in which people have been scared to go outside, let alone seek care,” he said.

Caballero said there’s also paranoia among those in mixed-status families that using public benefits could affect immigration status, even though the government says lawful permanent residents who seek medical care related to Covid-19 wouldn’t be penalized.

“For these immigrant communities, it’s much more than just fear related to Covid or discrimination that they’ve been experiencing,” he said. “You add to that the public charge and unfriendly immigration environment. Who blames them for not wanting to be trackable or identified in the system?

“Folks are not going to want to get a Covid diagnosis if they can help it, just because it means risk,” he added.

In Hawaii’s Pacific Islander community, a strong stigma is attached to having Covid-19, which compounds the discrimination it faces, said Tina Tauasosi, community partnership and research specialist at the University of Hawaii at Manoa.

“It’s more like it’s a sin: ‘I got it. I’m infected because something is wrong with me. Look at other people — they’re not infected.’ That’s the kind of perspective that a lot of Pacific Islander people have,” Tauasosi said.

Diena Petersen, a public housing resident in the neighborhood of Kalihi on Oahu, who tested positive for Covid-19 in August along with other adults in her household, said there are a number of reasons it can be difficult to talk about the disease and get tested.

Petersen said one of the reasons is that testing positive for Covid-19 compounds the discrimination and judgment that Pacific Islander public housing residents face.

“One of the stereotypes with Pacific Island families is that the clusters in public housing are rapidly growing due to their social gatherings,” she said. “However, many members are essential and front-line workers that have placed families in this position.”

Access to testing is another issue. Petersen said an adult in her household had to pay $200 for a test.

“The fact that people are being asked to pay a high fee for a Covid test is very concerning at a time like this and really discouraging them from getting tested,” she said.

Joseph Keawe’aimoku Kaholokula, chair of the Department of Native Hawaiian Health at the University of Hawaii at Manoa, said socioeconomic status often contributes to the community’s reluctance to report being Covid-19 positive. He said many work in minimum-wage occupations in which job security could be jeopardized by a leave of absence.

“Unless there are resources to help, why should our Pacific Islander communities participate if it means coming out of work for two weeks with no pay?” he said.

The need for better data collection

While experts and community leaders are able to draw some conclusions about the impact of Covid-19 on the AAPI community based on existing data, they say more disaggregation is needed to answer important questions.

“When you’re talking about Asian Americans and their vulnerability to Covid-19, how much of it is Filipinos versus Vietnamese and different stories that would emerge based on those populations?” asked Ramakrishnan, of AAPI Data. “Is it occupation-related? If so, is it because of working in nail salons and in the personal care industry? Is it related to working in health care when you’re talking about Filipino nurses?”

Kaholokula also said the lumping of data for Native Hawaiian and Pacific Islanders, or NHPIs, with those of Asian Americans masks inequities.

“When you disaggregate Native Hawaiians and Pacific Islanders from Asians, the data tells a different story,” he said. “Things are worse for NHPIs, for the most part.”

Without disaggregated data, AAPIs aren’t considered to be at risk and don’t get information needed about things like the pandemic, said Ninez Ponce, a professor of health policy and management and director of the Center for Health Policy Research at UCLA.

Tung Nguyen, a professor of medicine at the University of California, San Francisco, said in an email that lumping all AAPIs together makes it harder to get funding to collect better data and develop effective interventions.

“I call this the ‘gaslighting of the Asian American population,’ and it has been going on for decades, for every single health condition that I can think of,” he said. “It is an example of anti-Asian structural racism.”

Ramakrishnan said the numbers point to the urgent need for better data collection.

“I think what the data we have so far suggests is we need to act fast. We can’t wait another year or two for improvements in data collection. I think there’s enough evidence which suggests there’s a problem, and a very serious one,” he said.