Distrust in vaccines may be COVID’s ‘horrific’ legacy
Jesse Ehrenfeld, an anesthesiologist at a Wisconsin hospital, asked a patient about to have heart surgery if she would consent to a blood transfusion should it become necessary.
It’s a standard question. But the patient refused.
It was 2021, and the COVID-19 vaccine had become publicly available only a few months earlier. This patient, though, made it clear she did not want the vaccine – or blood from anyone who had been vaccinated.
“It was at that moment I knew we were in for it,” Ehrenfeld said.
It was four years ago this month that the scope of the crisis facing the world began to crystallize. The World Health Organization classified COVID-19 as a pandemic, and then-President Donald Trump declared a nationwide emergency that would last for three years.
While the pandemic no longer dominates headlines, misinformation about nearly every aspect still spreads online. More than 1.1 million people in the U.S. have died of COVID-19, including hundreds of thousands who, often for reasons rooted in misinformation, chose not to get vaccinated.
About 30% of the population hasn’t received the initial series of vaccines, let alone boosters.
The spread of COVID-19 misinformation has been a concern for public health experts from the start of the pandemic. Nearly 25% of all claims debunked by USA TODAY’s fact-checking team from March 2020 to December 2021 were related to COVID-19.
Ehrenfeld said he and other doctors continue to have conversations with patients who believe misleading or outright false claims about COVID-19, sometimes to the detriment of their health. Thousands of people are still hospitalized with the disease every week, and some never make it out.
“It’s heartbreaking,” said Ehrenfeld, who last year became president of the American Medical Association. “We work so hard to practice evidencebased medicine.”
Experts told USA TODAY that misinformation about COVID-19 eroded trust in public health agencies, heightened already inflamed political divisions and created a near-constant challenge to discern fact from fiction.
“We’re more willing to believe that dark forces are working behind the scenes against us,” said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia. “That’s what these kinds of conspiracy theories provide.”
The development of a safe and effective vaccine against COVID-19 was the “greatest scientific or medical achievement in my lifetime,” said Offit, who lived through the development of the polio vaccine.
But the spread of misinformation about the COVID-19 vaccine has lowered trust in other vaccines, risking outbreaks of diseases once thought all but eradicated.
If that continues it could, in the long run, be the “horrific” legacy of this pandemic, Offit said.
“If we start to take down school vaccine mandates, you’ll start to see these diseases come back,” he said. “Maybe that’s going to be the legacy of this pandemic. I hope not, but that’s the scariest part.”
Anti-vaccine sentiment predates pandemic
Mistrust in the medical establishment existed long before COVID-19.
In 1982, a television documentary featured children with severe health problems purportedly caused by the vaccine for pertussis, or whooping cough.
Medical experts denounced the documentary as “imbalanced” and “inaccurate.” The American Academy of Pediatrics said its “distortion and total lack of balance of scientific fact” caused “extraordinary anguish and perhaps irreparable harm to the health and welfare of the nation’s children.”
Nonetheless, the documentary - which Offit called the birth of the antivaccine movement - led to lawsuits against vaccine manufacturers that eventually prompted lawmakers to pass the National Childhood Vaccine Injury Act. That created a way to compensate people for injuries caused by vaccines.
Peter Hotez, a vaccine researcher and dean of the National School of Tropical Medicine at Baylor College of Medicine, became familiar with health misinformation after his now-adult daughter was diagnosed with autism. Hotez took on those who blamed vaccines, publishing a book in 2018 titled, “Vaccines Did Not Cause Rachel’s Autism: My Journey as a Vaccine Scientist, Pediatrician, and Autism Dad.”
Hotez showed that, in his daughter’s case, a rare genetic mutation caused repetitive behaviors and communication problems. The claim that vaccines are somehow linked to autism has been repeatedly debunked by multiple studies.
Still, vaccines weren’t as political then, Hotez said: “It was mostly groups monetizing the internet, selling phony autism cures, nutritional supplements and anti-vaccine conspiracy books.”
That mirrors what Tara Kirk Sell, a senior researcher at the Johns Hopkins Center for Health Security, found studying health misinformation that spread during the Ebola outbreak in West Africa that killed 11,325 people.
Sell said she was surprised to see how misinformation was used as a “vehicle for all of these other goals.”
“If you want to increase political division, if you want to promote a social policy, if you want some sort of financial advantage, the health event and healthrelated misinformation is what gets in front of people’s eyes,” she said.
The threat posed by health misinformation was a focus of an October 2019 training exercise conducted by the Johns Hopkins Center for Health Security, the World Economic Forum and the Gates Foundation.
The stakes were clear: “It’s really going to mess up the response,” Sell recalled thinking about potential misinformation. “It’s going to put responders in danger. It’s going to make it so people don’t trust the government.”
The drill led to several recommendations, including that governments and the private sector find ways to fight misinformation before the next pandemic.
But the first cases of COVID-19 would be reported less than two months later.
The ‘muddled middle’
The pandemic created a perfect storm for misinformation. Lockdowns made people rely on social media and other online communities, said Sedona Chinn, an assistant professor in life sciences communication at the University of Wisconsin-Madison. More people were searching for reliable information because the situation was so uncertain.
“Those emotions, like anxiety and fear, lead us to want to try to find some more information,” she said. The emotional intensity also led people to act and share info online “without critically evaluating the information.”
And the rapid pace of scientific research made it hard for people to keep up, which created opportunities for misinformation to spread, said Liz Hamel, director of public opinion and survey research at KFF, a health policy research group.
A survey KFF released in August 2023 found most adults in the U.S. have encountered health misinformation – and many aren’t certain what to believe.
Asked to evaluate several false claims about COVID-19 and vaccines, about one-third of respondents thought the false claim that COVID-19 vaccines have caused thousands of sudden deaths in otherwise healthy people was either definitely or probably true.
Fewer respondents believed other false claims about COVID-19. However, most people are in what the report called the “muddled middle.”
“These are people who, when you ask them about a false claim, they say it’s either probably true or probably false,” Hamel said. “That’s really the first indication of how confusing it can be for the public.”
Adding to the confusion is the question of what sources of information to trust. A 2023 study looking at the phrase “do your own research” found that the phrase, though technically a call to dig deeper, was instead often associated with “anti-expert attitudes and mistrust, leading to inaccurate beliefs,” the study says.
“People who had positive views about ‘doing your own research’ were more likely to become more misinformed about COVID over time,” said Chinn, one of the study’s authors.
‘Political allegiance’ influenced misinformation beliefs
By the time the COVID-19 vaccines became available in late 2020, nearly 300,000 people in the U.S. had died. But deaths didn’t affect all groups equally, illustrating the fatal toll misinformation can exact. Offit, who called the vaccine a “ticket out of the pandemic,” said he thought that such a vaccine, given the dire circumstances, might ultimately lead to the demise of anti-vaccine groups. Instead, the opposite happened. Some prominent anti-vaccine groups have seen massive funding increases since the pandemic began. “This was their chance to misinform the public,” Offit said. The vaccine has been perhaps the most frequent target of misinformation during the pandemic. It has been wrongly blamed for “sudden deaths” and “turbo cancer.” There have been false claims about its development, safety and effectiveness. But attitudes toward the vaccine - and the willingness to believe false claims – have been distinctly political. KFF polling shows Republicans were more likely than Democrats to say they believed false claims about the COVID-19 vaccine and other vaccine. KFF also reported that only about one-quarter of Republicans planned to get the latest COVID-19 vaccine compared to nearly three-quarters of Democrats, “reflecting patterns seen throughout the COVID-19 pandemic.” In an October 2020 Cornell University, researchers found the “single largest driver” of COVID-19 misinformation was one person: Trump. The largest spike in misinformation news coverage happened on April 24, 2020, when Trump baselessly suggested that bleach and other disinfectants might be a possible treatment for COVID-19.
And COVID-19 has accordingly taken a disproportionate toll on Republicans.
A 2023 study by Yale University researchers found excess deaths during the pandemic were more than 40% higher among Republicans than Democrats in the two states it examined: Ohio and Florida. A 2022 study published in Health Affairs found similar results.
To Hotez, the hundreds of thousands of Americans who died after being convinced not to get vaccinated are victims of a “predatory movement.”
“They went down that rabbit hole as a form of political allegiance and paid for it with their lives,” he said.
Rebuilding trust, finding empathy
Medical providers said their focus now is finding ways to have respectful conversations with patients regardless of their views on COVID-19 and vaccines.
Frustration “doesn’t get us anywhere,” said Amanda Johnson, a primary care doctor in New York City.
Johnson has talked about misinformation with patients. Some have asked her to review social media posts they’ve seen. She said the most animated responses come from patients who believe they’re losing control or having something forced on them.
Many people are disparaging or dismissive when talking about people who believe misinformation, but it can happen to anyone, Chinn said.
“I never admit that I’m wrong when somebody backs me into a corner and yells at me. You’re just going to get more defensive,” Chinn said. “People have good intentions in trying to correct misinformation. But it’s a challenging thing to do. It’s a challenging thing to admit that you were deceived.”
Ehrenfeld, the anesthesiologist, said he asks his patients questions to learn what they believe, why they believe it and where they heard it from. It doesn’t happen often, but he has “seen the lightbulb go off” for some patients, including some who have agreed to be vaccinated after talking with him.
Most people, Ehrenfeld said, still have some level of trust in their doctor.
“While that trust has eroded a little bit, there is still tremendous value and opportunity in these personal one-onone relationships,” he said.
Doctors have consistently been the most trusted source for health information during the pandemic, Hamel said. KFF’s polling shows more than 90% of people trust their doctor’s health recommendations “at least a fair amount.” Only about two-thirds had the same level of trust in federal agencies like the Centers for Disease Control and Prevention and the Food and Drug Administration.
The work of rebuilding trust in the medical community has only just begun.
“We have to continue to elevate credible messages,” Ehrenfeld said. “We have to make it easy for people to obtain accurate, correct information.”