A dangerous debate

From misinformation on social media to advocacy groups reporting ‘fake news,’ vaccinating children has become a controversial topic. But why?

Story by Julie Saetre

The Facebook messages began pouring in 24 hours after baby Riley died in the pediatric intensive care unit of a Western Australian hospital.

 They told Riley’s grieving parents, Catherine and Greg Hughes, to shut up about the death of their son. They accused the Hughes of murdering Riley for profit. One called the couple Nazis.

It was an onslaught that began in February 2015 and continues to this day. Catherine Hughes calls the thousands of messages that have assaulted her Facebook feed and email inbox “a big pile of ugliness and lies.”

What grave sin had drawn such vitriol? Riley became ill with whooping cough when he was 28 days old. Despite the medical staff’s best efforts, the disease progressed into pneumonia, and he died four days later. At the time of her pregnancy, Hughes was not aware that pregnant women can receive a vaccine for whooping cough, thus also protecting their babies until they are old enough to be vaccinated themselves. When she posted about Riley’s death on Facebook, she encouraged other expectant mothers and unvaccinated adults to get the vaccine. And that brought on the swift wrath of those who were vehemently against vaccinations.

“We were shocked that people would attack parents who’d just lost a baby,” says Hughes, who would later help found The Immunisation Foundation of Australia and its Light for Riley campaign, which resulted in a free government vaccination program for pregnant mothers. “We knew that some people didn’t agree with vaccinations, so we knew that not everybody would agree with us. But we didn’t expect the amount of vitriol and hate that poured into our inbox from the anti-vaxx movement.”

The subject of vaccinations has taken on an urgent spotlight in 2019, sparked by measles outbreaks in countries where the disease had once been eliminated. Vaccination rates for children have been dropping, along with a corresponding loss of herd immunity. And that means measles rates are up — way up. 

As of June 20, 2019, the United States had confirmed 1,077 cases of measles since the year began. That’s the greatest number of cases reported in the country since 1992, according to the Centers for Disease Control and Prevention. By comparison, in all of 2010, the CDC confirmed 63 cases nationwide; in 2018, 372.

In February 2019, the BBC summarized data from the World Health Organization showing that measles cases in Europe tripled between 2017 and 2018 to 82,596 — the highest number recorded this decade. More than 53,000 of those cases were confirmed in Ukraine, where vaccination rates are low due to a combination of vaccine refusal, unavailability and lack of access.

And in Australia, which was declared measles-free just five years ago, cases have climbed from 81 in 2017 to 103 in 2018 and 92 by April 9, 2019. Vaccination rates for children in Australia are high — 93 percent in 2017 — but many residents born between 1966 and 1994 received only one dose, rather than the now-recommended two. Those adults are vulnerable to contracting measles when they travel to areas with lower vaccination rates. 

The situation has become so troubling that the World Health Organization called vaccine hesitancy — the reluctance or refusal to vaccinate despite the availability of vaccines — one of the top global health threats in 2019.

Measles is a highly contagious disease. The CDC reports that up to 90% of “susceptible people” — those who haven’t been vaccinated — will contract it on exposure. The disease once caused an estimated 2.6 million deaths each year, according to the World Health Organization. In 2017, approximately 110,000 people worldwide died from measles, most of them children under the age of five. 

But the measles vaccine, developed in 1963 and refined in 1968, is highly successful. One dose is about 93% effective; the rate rises to about 97% with the second dose. Children can receive the first dose as early as 12 months of age. 

So why, in western countries not plagued by poverty, war, political unrest and other serious barriers, are children not receiving the vaccine? 

The troubling situation has evolved from a complex combination of elements, including a discredited study, the power of the internet and social media, the influence of celebrities, a renewed mistrust of authority and good old-fashioned human nature.

In 1998, Andrew Wakefield, a London-based physician, published a study of 12 children, linking the measles, mumps and rubella (MMR) vaccine to autism and gastrointestinal issues. He called this syndrome “autistic enterocolitis.” The prestigious medical journal “The Lancet” ran the study, and Wakefield also appeared at a news conference during which he urged replacing the MMR vaccine with one that vaccinated for measles only. An explosion of publicity followed, along with dropping vaccination rates in Europe and the U.S.

Subsequent scientific reviews of Wakefield’s work revealed serious flaws, including faulty sampling methods, falsified data and results that couldn’t be replicated. “The Lancet” partially retracted Wakefield’s study in 2004 and issued a full retraction in 2010, the same year that Wakefield was removed from the register of the U.K. General Medical Counsel.

In 2011, “The BMJ” (formerly “The British Medical Journal”) published a series of investigative articles that reported even more disconcerting information. Those findings were recently discussed on the website of “Psychology Today” in a February 2019 blog entry by Dr. Joseph Pierre, health sciences clinical professor in the Department of Psychiatry and Biobehavioral Sciences at David Geffen School of Medicine at UCLA and associate director of Residency Education at the UCLA Semel Neuropsychiatric Institute and VA Greater Los Angeles Healthcare System.

“Wakefield had received over £400,000 from a law firm looking for clients in a class action lawsuit against the makers of the MMR vaccine and had also applied for a patent for a ‘safer’ monovalent (targeting a single disease) measles vaccine to replace the trivalent MMR vaccine,” Pierre wrote in an entry titled “Antivaxxers and the Plague of Science Denial.”

The investigation also reported that Wakefield filed patents for diagnostic tests and treatments for the new syndrome he had claimed to discover.

Wakefield has denied any wrongdoing.

The CDC states that, like any medication, vaccines can cause side effects.
But it reports that multiple verifiable scientific studies have not revealed a link between the MMR vaccine and autism.

In April 2019, the American College of Physicians published a study in its “Annals of Internal Medicine” of more than 650,000 children followed over a decade to evaluate whether the MMR vaccine increases the risk for autism. Its conclusion: “The study strongly supports that MMR vaccination does not increase the risk for autism, does not trigger autism in susceptible children, and is not associated with clustering of autism cases after vaccination.”

However, Wakefield’s assertions remain deeply entrenched among some parents. His 1998 report collided perfectly with the launch of social media, which began when the first recognized social media site, “Six Degrees,” was founded a year earlier. As platforms became more sophisticated, so did their ease of use, reach and ability to influence.  At the same time, autism became more highly publicized, and parents’ fears of the developmental disorder grew. They were looking for answers, for a way to protect their children, and Wakefield’s report seemed to offer them both.

“I think it’s normal and natural for people to have questions about vaccinations,” says Hughes. “And I think it’s quite a good thing that people ask those questions — as long as they get their answers from very
evidence-based resources.”

“Trying to counteract a conspiracy theory can be very difficult. These are often very strongly held beliefs, and people don’t give them up easily.”

Even in today’s technology-centered society, that isn’t always the case. In September 2007, American actress and model Jenny McCarthy appeared on The Oprah Winfrey Show, at the time watched by 7.8 million television viewers. McCarthy told the host that her son began showing symptoms of autism after receiving his MMR vaccine. That appearance — and more that followed, both by McCarthy and other celebrities on a variety of programs — sparked a new round of worry over the vaccine’s safety.

Meanwhile, Wakefield, seemingly undaunted by the retraction of his study and the revocation of his British license, moved to Texas in the U.S. and continued his anti-MMR-vaccine efforts. In 2016, he released “Vaxxed,” a film accusing the CDC of covering up information that linked the MMR vaccine and autism. Some parents believed the charge. Others —  like the ones who inundated Hughes with hateful messages —  believed big pharma and/or big government were promoting vaccines to seek profit at any cost.

“When we were accused of murdering our own child and then conspiring with the government to pretend that it was whooping cough in order to roll out a successful whooping cough vaccination program for pregnant women, that was insane,” says Hughes.

Vaccine hesitancy had, for some, crossed the line into conspiracy.

“Not all anti-vaxxers are necessarily conspiracy theorists,” Pierre says. “Believing that vaccines cause autism or other ill effects isn’t a conspiracy theory in itself. The conspiracy belief is that the government, Centers for Disease Control and Prevention and physicians are in cahoots with the pharmaceutical industry to suppress that information from the public.”

People are more vulnerable to conspiracy theories than you might think, even in a world with access to vast databases of scientific evidence at the touch of a keyboard.

“Belief in conspiracy theories is very common,” Pierre says. “Around 50% of the U.S. population believes in at least one, a prevalence that has held steady for at least several decades.”

Karen Douglas, professor of social psychology at the U.K.’s University of Kent in Canterbury, specializes in research on conspiracy theories and co-authored the study “Belief in conspiracy theories: Basic principles of an emerging research.” She says findings show that the single best predictor of belief in one conspiracy theory is a belief in a different conspiracy. “Moreover,” her study reports, “throughout history people have believed conspiracy theories particularly in impactful societal crisis situations, such as during fires, floods, earthquakes, rapid societal change, violence and wars.”

So it might not be so surprising that modern times offer a kind of perfect storm to help conspiracy theories thrive.

“There’s good evidence that we are living at a time of significant mistrust in institutions of authority, whether we’re talking about the government, the media, scientists or physicians,” Pierre says. “This isn’t to say that mistrust of these institutions has never been higher; only that we’re riding a wave of populism in this country that frowns upon ‘elites’ and discounts the authority of experts.”

Add to that the ease with which information — and misinformation — spread on the internet and through social media. The London-based Royal Society for Public Health reports that half of all parents have seen anti-vaccination messages on social media, while a 2013 study published in the journal “Pediatrics” found the variable that most affected a parent’s decision not to vaccinate their child was the percentage of people in that parent’s social media network recommending non-vaccination. Also in 2013, the World Economic Forum first sounded a warning about the global risk posed by “massive digital misinformation.”

“It’s very tempting to suggest that the ubiquity of information shared over the internet has created a climate ripe for the growth of conspiracy beliefs,” Pierre says. “Certainly, it’s much easier now to gather online ‘evidence’ for virtually any belief imaginable and to find like-minded souls who share your belief.”

That creates what experts call an “echo chamber,” in which people read and share only information that reinforces their beliefs while dismissing anything contradicting those ideas. It explains why the retraction of Wakefield’s study and the subsequent release of repeated findings contradicting it make no impact on conspiracy theorists.

Another tenet from psychology, the Dunning-Kruger effect, also comes into play.

“The Dunning-Kruger effect is a finding from psychology research that almost everyone overestimates their level of knowledge on any given subject,” Pierre explains. “This mismatch between self-rated knowledge and actual knowledge tends to be largest for people with the lowest levels of actual knowledge, whereas it gets reversed at the highest level, where true experts underestimate themselves. This effect was demonstrated in a recent study about anti-vaccine beliefs — those with the lowest levels of knowledge about vaccines rated their knowledge as on par with that of doctors and scientists.”

There’s yet another element at work in the vaccine debate. The 2015 study “Going against the Herd: Psychological and Cultural Factors Underlying the ‘Vaccination Confidence Gap’” pointed out that vaccine skepticism often goes hand-in-hand with a preference for complementary and alternative medicine and a mistrust of authority. And that happens to form a lucrative market.

“I think a part of (anti-vaccine activism) is definitely embedded into some of the alternative-health industry,” Hughes says. “And I guess there’s money to be made, because differing alternative-health industries can sell alternatives to vaccines — things to boost immunity and that sort of thing. I do think money is part of the reason why some people really get into the anti-vaccine activism. … I have yet to find an anti-vaccine website that’s not trying to sell something.” 

With so many influencing factors in the mix, reversing the decline of vaccination rates has no easy fix. In 2016, the Australian government launched its “no jab, no pay” policy, which reduces parents’ tax benefits a certain amount for each unvaccinated child. In July of this year, the University of Sydney and University of Western Australia released a study showing the policy is supported by more than 80% of the country’s public.

In the U.S., some states that formerly allowed parents to bypass vaccinating their children for non-medical reasons are working to reverse that legislation, to very vocal forms of protest. In both Washington state and California, sponsors of bills that would limit vaccine exemptions received death threats; others reported a steady stream of harassment via phone calls and social media.

“There’s good evidence that we are living at a time of significant mistrust in institutions of authority, whether we’re talking about the government, the media, scientists or physicians.”

“Trying to counteract a conspiracy theory can be very difficult,” says Kent’s Douglas. “These are often very strongly held beliefs, and people don’t give them up easily. People are often very passionate about what they believe, and they will strongly defend their beliefs. An expert who tries to debunk a conspiracy theory with scientific evidence might be viewed as being part of the conspiracy.”

Says Pierre, “Part of the reason that belief systems can be so resistant to change is that they’re often entwined with our identities. Changing our beliefs can therefore feel like we’re renouncing ourselves or even losing some important existential battle.”

How, then, can the anti-vaccination mindset be changed? For starters, advises Pierre, stay off the internet, which, due to its anonymous nature, is often a hostile environment. Instead, try a face-to-face conversation that begins with empathic listening: Make a sincere, nonjudgmental attempt to understand why the person believes what they do. If you develop a rapport, that individual might be more open to different information.

“But,” Pierre cautions, “their receptivity will likely depend on whether they’re looking for answers or trying to resolve an ambiguity — so called fence-sitters who might be genuinely willing to learn — or whether they’re just looking for a fight and are on guard to being attacked. For the issue of vaccine hesitancy, these conversations are best had one-to-one between patients and their doctors and other healthcare providers, where trust is earned through open communication.”

Hughes believes governments should become more involved, and so should parents who do vaccinate their children. 

“I think governments need to invest in high-quality vaccine-hesitant research,” she says. “It’s really important. And I think we need to encourage parents to step up and be vocal, even if it’s a very adversarial backlash. We need parents to support vaccines, to be brave and stand up and say, ‘Yes, I vaccinate. It’s a great thing. I’m proud to vaccinate.’”

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This story originally appeared in the September 2019 issue of Kiwanis magazine.