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INFORMATION DEFICIT

The US communities hit hardest by Covid-19 are also the most ignored

Two shoppers with grey hair go through food at a Chinatown market in San Francisco
Reuters/Shannon Stapleton
The US government has provided woefully little information to reach diverse elders.
  • Katherine Ellen Foley
By Katherine Ellen Foley

Health and science reporter

When Joon Bang asked his team to look over translations of some public messages about coronavirus, some of them raised an important question.

One Mandarin translation, with information about limiting exposure to SARS-CoV-2, included the characters ‘暴露.’ Technically, it wasn’t incorrect: The characters mean ‘exposed.’ But not quite in the way Bang, the president and chief executive officer of the US National Asian Pacific Center on Aging (NAPCA), had intended.

“It came out to be ‘exposing your body’— with a sexual connotation,” Bang says. It can also sometimes mean “revealed.” In either case, NAPCA’s translation wouldn’t be accurate for the aging Asian and Pacific Island communities they serve.

Fortunately, the nonprofit employs staffers from all kinds of backgrounds; native Mandarin speakers were able to quickly correct the mistake. They put the updated information on their website, which now includes information on Covid-19 in Vietnamese, Cantonese, Mandarin, Korean, Filipino, Japanese, and Spanish—and English, of course.

“It’s been really challenging for our organization and other nonprofits that work with diverse communities whose first language isn’t English,” says Frances Huynh, NAPCA’s national project coordinator. Since the US epidemic accelerated in March of this year, NAPCA and other organizations have been fielding anxious questions from the older adults they serve—not just about the coronavirus itself, but about living in a new, socially isolated world. Huynh says that their hotline, which they re-established in part to answer questions about how to receive stimulus checks and shop for groceries, also has an option for in-language guided meditation.

People who aren’t proficient in English—particularly those who are older, and may not be tech-savvy enough to find the resources they need online—have largely been left out of the conversation around Covid-19, and their care has fallen through the cracks. Non-profit organizations like NAPCA, the National Indian Council on Aging, and the National Hispanic Council on Aging, as well as several smaller, locally-based organizations have had to step in to try to fill those gaps.

While these groups are culturally competent and have a good idea of what their communities need, they’re also stretched thin. They were never meant to meet such a wide variety of needs. But right now, without further support from the federal government, these community groups are all that older minorities have.

Uncounted, unaided

One reason federal support has been lacking: There isn’t any actual data demonstrating its necessity. “Not everyone is collecting or reporting intersectional data deaths broken down by age,” says Denny Chan, a senior staff attorney at Justice in Aging, a nonprofit based in Washington DC.

The US Centers for Disease Control and Prevention has some data about the breakdown of cases by race. But it’s not comprehensive; the agency only has race data for about a third of total US Covid-19 cases at the time of writing. That data is used to break down cases by race and age, but it’s hard to see the actual prevalence of Covid-19 across these groups given that so few people are represented.

Instead, it’s been up to states and local municipalities to collect. The quality of these data vary by area; some rural areas haven’t collected data like this at all.

That means aid organizations have to go by the anecdotes they hear. “What we know is true on the ground is that older adults and older people of color are more likely to have severe complications,” Chan says.

Logically, the conclusion makes sense: We know older adults have been hit hardest by the pandemic. From a purely physical health standpoint, they’re more vulnerable. They’re more likely to have weaker immune systems with fewer protective white cells patrolling their bodies. When they do get sick, they’re more likely to have a harmful inflammatory response than younger adults. And on top of that, they’re more likely to have preexisting conditions that may complicate their treatment.

But there are social factors working against a lot of older adults, too. Even before the pandemic, 25 million adults over 60 were considered economically insecure—bringing home $29,425 or less per year. Many of them rely on social security, a federal program for retirees that pays them a certain amount per month to live. In 2015, about 3 million adults over 65 reported (pdf) having chronic trouble buying enough food.

The pandemic has exacerbated these challenges. Low-income seniors with bare-bones Medicare federal insurance—without extra packages like Medicare Advantage or extra private insurance—will likely have to face astronomical bills out-of-pocket. Those over 65 also are facing higher rates of unemployment than the already-staggering national average—15.7% in April for seniors, compared to 14.6% for those 16 years old and older.

Spread the word

Information inequality creates the biggest health disparities.

Major health authorities like the US CDC and the World Health Organization rely on state and local health authorities to disseminate important information to their communities, or news outlets to reach their audiences wherever they are. But despite the glut of information available regarding Covid-19, even the basics aren’t reaching certain aging communities in the US.

“Our communities get information from other community settings. Places like barber shops, senior centers, or tribal communities,” says Jenna McDavid, the national director for the Diverse Elders Coalition. Once Covid-19 hit, social distancing precautions led a lot of those regular meeting places to close down, which cut down on peer-to-peer information swapping.

Community-shared info is particularly important for its credibility: Groups like older African Americans, who have been historically betrayed by major medical establishments, are understandably more likely to be wary of health information coming from an unfamiliar source.

It’s also key for groups like Hispanic communities, in which some people are undocumented. “That immigrant population…is afraid to get tested because they’re afraid that they’ll be asked about their immigration status,” says Juanita Mora, an immunologist practicing in Chicago. She says that only local groups that have explicitly stated that they are not concerned with immigration status have gained the trust of these communities and helped them get tested for coronavirus infections.

A lot of local public health authorities or community advocacy groups have resorted to going online after their physical locations have closed their doors. Theoretically, virtual meetings and information are accessible to anyone with an internet connection. But again, those forums may leave out older adults.

A 2017 Pew Research Survey found that only about half of adults over 65 had broadband at home. Though some older adults have bridged the digital divide to stay informed, others haven’t been able to. Even before Covid-19 hit, a lot of the people who participated in some of NAPCA’s programs did so using computers in public libraries, Huynh says.

And even if these communities can access online resources, they aren’t always in the right language.

The US federal government provides information on Covid-19 and resources for the pandemic in English and Spanish. There are options for some other languages at the bottom of the Spanish page, but they’re hidden out of the way and not necessarily related to the pandemic. They also require readers to call another phone number to get the information they want. Legally, hospitals are required to provide reasonable measures to get interpreters for patients—but they don’t alway do so. And by the time that people do make it to a hospital, it’s arguably too late: The goal is to prevent these severe cases.

Some local authorities have been translating information into languages that make sense for their constituents, but they’re not always perfect. They run into similar issues that NAPCA found when they hired a translation service: Cultural nuance can be lost to literal translation. The New York Mayor’s office, for example, put out an ad that was supposed to express gratitude for health care workers, but instead asked readers if they had applauded the government.

In-group knowledge

Even a perfect translation can miss details that should be tailored to specific communities, though—which is where these community-focused organizations come in.

In Latinx culture, family members greet each other with hugs and kisses that have since been forbidden to stop the spread of Covid-19. Any information targeted toward those communities has to take that cultural context into consideration. People are treating it like the early days of the AIDS epidemic, says Mora. “People were afraid to get near their family members again because they had had Covid-19, even though they had done the isolation,” she says.

To try to bridge some of these gaps, the National Hispanic Council on Aging has also put its own information in webinars. Some of them have been purely health focused, while others have focused on speciality topics, like caregiving for older loved ones in a time when other centers, like nursing homes or adult day centers, may be closed. This is particularly relevant because older adults within this community are more likely to live with their adult children and families.

NAPCA, the group focused on older Asian Americans and Pacific Islanders, has also launched their in-language Covid-19 information online, in addition to setting up a hotline anyone can call between 8:30 am and 1 pm Pacific standard time on weekdays. They’re available to answer questions about Covid-19, but also questions about how to safely get groceries or how to get federal or state aid.

Just listening and talking to someone in a way that feels comfortable is a big part of the job, too. “It’s really just been checking in with people to see how they’re doing,” says Huynh. “Folks have voiced concerns around economic wellbeing, or told us that they won’t be able to pay the rent.” NAPCA has also heard several people talk about new forms of racism or discrimination enabled by the threat of coronavirus. In these cases, even if the organization doesn’t have a solution, at least they can stay on the other end of the line.

“I think everyone was unprepared, but government agencies on the federal, state, and county levels didn’t have the plans either,” says Bang. “I can sense that they were trying to figure out what to do as well.”

At the moment, NAPCA and other groups are busy focusing on meeting the immediate needs of the communities they serve by answering their questions and providing them with resources. They don’t have the capacity to collect the data that are needed to build the case that they need more federal support. As a result, the true consequences of the pandemic among older minorities will undoubtedly be undercounted.

The makeshift solutions offered by these small groups are imperfect; they won’t help every older adult who isn’t comfortable in English. But they are, at least, acknowledging an overlooked group of people. That unwavering commitment is meaningful, particularly when governmental support systems have fallen through.

This article was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations and the John A. Hartford Foundation.

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