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Even if they can find a test, not everyone wants to know they have COVID

A person swabs their nose as they receive testing for both rapid antigen and PCR COVID-19 tests at a Reliant Health Services testing site in Hawthorne, Calif., on Jan. 18, 2022.
Patrick T. Fallon
AFP via Getty Images
A person swabs their nose as they receive testing for both rapid antigen and PCR COVID-19 tests at a Reliant Health Services testing site in Hawthorne, Calif., on Jan. 18, 2022.

A major public health tenet is that testing is critical for controlling viral spread, but Cristina San Martin could have found plenty of reasons not to test for COVID-19.

At-home rapid tests have been sold out, and lines at lab testing sites have wrapped around the block and booked a week in advance. As a dog washer at a grooming salon, San Martin can't afford $150 to test at an urgent-care site.

And then there's the unpleasantness of the test itself. "I actually know a couple of people who specifically do not want to get tested, even if they think they're positive, because the nasal swab hurts," says San Martin, 28, who lives in Cypress, Texas.

Nevertheless, at the first sign of sniffles and sore throat two weeks ago, San Martin, who identifies as nonbinary, sent a text to warn co-workers, missed work, and found someone with a car to drive them to get tested. But after the diagnosis was confirmed, the manager of the salon where they worked fired San Martin.

Now, not only is San Martin still feeling sick, but cash is also a problem. "I'm in no shape right now to apply for jobs or go get interviewed right now or anything like that," San Martin says between coughs.

In many parts of the country, finding a test can still be a challenge. But even if a test can be had, a positive result can bring stigma and isolation. Plus, there's the cost of missing a paycheck or keeping children home from school. So some, like San Martin — who is fully vaccinated — wonder whether it's worth the trouble to get tested.

"It's easy to take a moral stand and say, 'You should always do the right thing,' " San Martin says. "But if I knew that my job was on the line, I don't know if I would've gotten tested, because anyone could say, 'Oh, this is a cold,' or 'I just have the flu.' "

Dr. Shantanu Nundyworries that these kinds of practical concerns are drowning out calls to test early and often in the name of the public good.

Nundy, who treats mostly low-income patients at a federally funded clinic in Arlington, Va., says many of them ask: "Hey, can you test me? But can you test me, you know, [with] the rapid tests so that it's not part of my record?"

That's because lab-based PCR tests are reported to health officials. But many patients prefer to fly under the radar of authorities, including bosses and school administrators, because of the disruptions a confirmed diagnosis brings, Nundy says.

"The patients and families who are the most marginalized people — who don't have steady employment, receive benefits, have limited child care and home support — are those who are most likely to not test, and who are probably the ones who we need to test the most," because they're also the most exposed to the virus, he says.

Across the country, doctors say they see more patients avoiding testing out of fear of the disruptions it might cause on their livelihoods or on their families.

More people want to avoid testing, especially if they might be infectious but don't feel symptoms, says Jeanne Noble, an emergency room physician at the University of California, San Francisco Medical Center at Parnassus.

"I have heard many parents breathe a big sigh of relief when they say the school has run out of tests," says Noble. "Like, 'Oh good, there's no chance that I'm going to get a call at work that I'm going to have to come home.' "

This is a global phenomenon, says Francesco Fallucchi, a behavioral economist at the University of Parma in Italy who last year studied Americans' willingness to take COVID-19 tests.

A year ago, he found altruism was a big motivation for people to get tested; these days, people's concern for others bumps up against hard financial realities, especially because countries, including the U.S., have cut back on pandemic unemployment benefits.

"The disincentives to test are increasing and they are increasing because there is less financial security and because there is a greater perception that COVID is getting weaker," Fallucchi says.

It's a dilemma Fallucchi feels personally, as the parent of a daughter whose school required thrice-weekly at-home testing: "I have to admit — it's a bit shameful — but I met parents outside the school they said, 'Oh no, I'm not going to do it three times a week.'"

This reluctance to test puts employers, especially, in a tough spot. They face a dramatic labor shortage made worse by a surge of absences because of COVID-19. Yet testing is critical to containing that very problem.

Between COVID fatigue and pressures to return to work, Johnny Taylor Jr., CEO of the Society for Human Resource Management, says employers have a difficult task of returning workers to the office safely while not forcing them to comply with testing.

"The question is ... are [employees] willing to become tested?" he says. "I mean, like, do I really want the hassle?"

The fact that there is a choice is relatively new for Americans, because of the recent rise of at-home testing. That is fundamentally changing how the virus can be tracked and traced, says anthropologist Hugh Gusterson,who teaches the culture of science at the University of British Columbia and George Washington University.

"That responsibility will increasingly be delegated to ordinary people to test themselves and to make their own judgments how to react to the test results that they get," Gusterson says.

More consumers, in other words, will be able to make their own choice about whether to test, or withhold reporting the results, which in turn will make it much harder to measure the real number of COVID-19 cases, Gusterson says.

That's a worrisome prospect for Stella Safo, an infectious disease doctor at the Icahn School of Medicine at Mount Sinai. Safo herself takes medications that suppress her immune system and fears the growing reluctance to test means she and her patients now know less about who's infected — leaving them more vulnerable than ever.

"I think the people who have chronic illnesses, people who have preexisting conditions, people who are disabled are being driven truly underground," Safo says, especially because the public-health benefit of testing for the sake of those people isn't being emphasized.

"That messaging, I think, has been lost in this desire to kind of get back to normal living," she says. That leaves people to make their own risk calculations whether to test, based only on their personal circumstances — and can leave out the risks to the most vulnerable.

Copyright 2023 NPR. To see more, visit https://www.npr.org.

Yuki Noguchi is a correspondent on the Science Desk based out of NPR's headquarters in Washington, D.C. She started covering consumer health in the midst of the pandemic, reporting on everything from vaccination and racial inequities in access to health, to cancer care, obesity and mental health.