From Jamie Ducharme at TIME Magazine:
COVID-Cautious Americans Feel AbandonedFor
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
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.”
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.”
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.”
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.”
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What an excellent article!
All I know is, as an immunocompromised patient, I know I'm doing the right thing and still doing everything I can to protect myself and avoid getting COVID. What I don't like are the gaslighting, minimizing, deliberate lack of information, conspiracy theories, the attacks on cautious people, and the reckless behavior by those who are spreading COVID and other diseases.
If you don't like it that I don't eat in restaurants, that I wear masks, and that I get vaccinated, that's just tough! I don't need your approval to stay safe.
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