COVID-Cautious Americans Feel Abandoned

Credit - Illustration by TIME; Getty Images

For all of 2020, Alex, a 28-year-old living in New York, followed the U.S. Centers for Disease Control and Prevention’s (CDC) COVID-19 guidance “religiously.” Then, in 2021, something began to shift. That spring, the CDC said it was okay for vaccinated people to ditch their masks in most places. But people were clearly still getting sick—including Alex, who got COVID-19 for the first time in late 2021 and later developed Long COVID symptoms.

“There was this reckoning moment where it was like, ‘Maybe the CDC is not being totally honest with us about the situation,’” he says. “‘Maybe they’re trying to present it like we can go back to normal when we can’t.’”

For Alex, who asked to use only his first name to protect his privacy, that feeling has only deepened. The virus killed roughly 1,000 people in the U.S. during the week ending March 2 and has left about 7% of U.S. adults with Long COVID—but despite its continuing toll, real-time data on infections are limited, most mask mandates are gone, and isolation guidance has been scaled back.

The officials making those policies say they are justified, given that almost all of the U.S. population has some immunity to COVID-19, death and hospitalization rates are far lower than they were a few years ago, and tools like rapid tests, antivirals, and updated vaccines are widely available. “We are out of the emergency phase,” CDC Director Dr. Mandy Cohen said in a March interview with TIME. Updated guidelines, such as the end of five-day isolation periods, “reflect that progress,” Cohen said.

But to Alex, it feels less like progress than an attempt to “wrap [the pandemic] up in a pretty bow” and pretend everything is fine. Today, he feels there are “very few” experts he can trust—a sentiment that reflects a growing rift between America’s scientists and the COVID-cautious community, which includes people who are immunocompromised, coping with Long COVID, or simply trying to avoid the virus.

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For much of the pandemic, the scientific establishment and the COVID-cautious public were largely aligned in their desires to contain COVID-19. But as many officials argue for a more moderate approach to living with the virus, COVID-cautious individuals are increasingly the loudest voices calling for continued precautions—and, sometimes, lashing out at the scientists they feel have abandoned the cause.

People who “are still taking COVID precautions seriously have every right to be angry about being abandoned by public-health officials and experts,” says Lucky Tran, a science communicator at Columbia University. “The very real pain that many people are experiencing has not been sufficiently acknowledged.”

Some experts, however, feel they’re in a lose-lose situation, accused of fear mongering one moment and abandoning America’s most vulnerable the next. Experts “feel attacked from all sides,” says Katelyn Jetelina, who writes the popular Your Local Epidemiologist newsletter—and as a result, she fears some will stop trying to communicate at all, further fracturing the already strained relationship between scientists and the public.

Though it may not feel like it, a significant portion of U.S. adults still care about COVID-19. In a KFF survey from late 2023, 26% of respondents said they were “somewhat” or “very” worried about catching the virus, and about half said they planned to take at least one precaution during the winter season, such as wearing a mask or avoiding large gatherings.

Briana Mills, a 31-year-old in California, continues to take many precautions. She has muscular dystrophy and severely decreased lung capacity, which means even a cold could land her in the hospital. With COVID-19 still a threat and with most mitigation measures gone, Mills rarely sees anyone in person except her live-in boyfriend. She ventures out once a month for a park meetup with a group of similarly COVID-cautious people, testing beforehand and wearing a respirator the whole time, but mostly she stays at home.

Mills says she feels abandoned by federal health officials, most recently when they relaxed their COVID-19 isolation guidance in March, even while people like her continue to live in near-total seclusion. “They’re supposed to take care of the people,” she says. “The fact that they’re letting not just disabled people, but people in general, either become disabled or pass away from this virus is very negligent.”

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In certain segments of the population, disappointment with the CDC has been simmering for a long time, to the point that a volunteer group of scientists, health-care workers, public-health experts, educators, and advocates founded a group called People’s CDC to serve as a watchdog and alternate source of information. But federal officials aren’t the only ones drawing ire from those who still take the virus seriously. COVID-cautious Americans are increasingly turning their backs on some of the doctors, epidemiologists, and researchers who built their reputations on helping the public through the pandemic, and are now advocating for more relaxed measures.

Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota, amassed a dedicated following to his podcast, Osterholm Update, by dissecting COVID-19 policy and talking about his personal precautions throughout the pandemic. Recently, though, Osterholm has loosened up. He no longer wears an N95 mask anytime he goes out in public, since, he says, he’s up-to-date on vaccinations and has access to Paxlovid if he gets sick. And he supports the CDC’s shortened isolation guidelines, arguing they will not meaningfully increase transmission and are more realistic for the average person.

Some listeners have felt betrayed by his loosened stance. “I can no longer, in good faith, be part of this family,” one listener wrote in a note Osterholm read during the podcast’s March 7 episode. “I am so saddened that you are willing to make a mockery of public health and throw a 50-plus-year career down the toilet just to be beholden to the capitalist enterprise.”

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Osterholm isn't overly bothered by the criticism. Listening to and validating people's feelings is a crucial part of being in public health, he says—and right now, it's clear that "those who are reluctant to accept the current status of recommendations really do that out of a very real and legitimate personal fear." The criticism, he thinks, is "less about whatever you say; it's about whatever they're feeling."

Still, while Osterholm is empathetic to those fears, he thinks it's reasonable and justifiable for COVID-19 policy to change as the virus' impact on society does. “This is not about abandoning ship,” Osterholm says. “This is about the reality we’re in right now.”

Jetelina, who advises the CDC in addition to writing her newsletter, says she has also struggled to convey that her approach to COVID-19 is evolving with the data, not because she's stopped caring. She continues to recommend precautions like masking during surges and staying up-to-date on vaccines—but she also argues it’s appropriate to relax a bit now that "we don’t have overwhelmed morgues and we’re not losing 3,500 people a day."

That message sometimes chafes with longtime readers. In March, Jetelina turned over an edition of her newsletter to someone who has criticized COVID-19 mitigation measures, in an effort to better understand why some people lost trust in public health during the pandemic. Afterward, she got angry emails from followers who felt she was giving a platform to a COVID-19 minimizer. Jetelina has also been accused of downplaying ongoing risks like Long COVID.

It can feel surreal, she says, to get critical messages—and even death threats—from people who feel she isn’t being strict enough in her COVID-19 guidance when, a couple years ago, she was getting bashed for the opposite reason. The never-ending criticism sometimes makes her hesitant to keep publishing the newsletter at all. She recently took several weeks off because she was experiencing stress-related heart issues, and fears other science communicators will give up completely. “A lot of people are just kind of throwing up their hands and moving on, because it’s just not worth it,” she says. “That’s a huge concern of mine.”

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Dr. Lara Jirmanus, a clinical instructor at Harvard Medical School and a member of the People’s CDC, has the same fear—that the public will no longer have access to science-backed information—but for a different reason. In her view, many experts have given into "peer pressure" to start moving on from COVID-19, glossing over continued risks like Long COVID; societal inequities that leave some people without reliable access to tests, vaccines, and treatments; and the reality that not everyone is "25 and healthy."

While there are policy measures that could help make society safer for everyone, such as ventilation standards for public buildings and sick leave policies that allow everyone to stay home when they’re unwell, Jirmanus says independent scientists still have an important role to play. If all experts communicated clearly about the continued risks of the virus, Jirmanus thinks people might be more open to precautions like masking, staying home when sick, and getting vaccinated.

Officials sometimes argue that “public-health guidance is limited by what people are willing to do,” Jirmanus says. “But what people are willing to do is shaped by what experts tell them.”

Data and communication are all Lindy Greer, a 45-year-old in Washington State, wants these days. Greer has taken COVID-19 seriously since the very beginning, both because she previously had long-term symptoms after a non-COVID viral illness and because she works as an esthetician, putting her in close contact with others. She still wears an N95 every day and uses a HEPA air purifier in her work studio, because she still feels COVID-19 is a major threat.

It’s frustrating, Greer says, that many experts, including those she looked up to earlier in the pandemic, don’t seem to feel that way anymore. When even the experts have moved on, she says, it becomes harder for everyone to figure out how to stay safe—and causes people who remain COVID-cautious, like her, to wonder if they're “crazy” for still caring.

“People in our community are pegged as wanting lockdowns again, and that’s not the case at all,” she says. “All I ever want is for people to have the right information.”

Write to Jamie Ducharme at jamie.ducharme@time.com.