From the First Anti-vax Wave to Today

A movement of misinformation stretching back to 1998 has only entrenched itself

From the First Anti-vax Wave to Today

Note: Given the pending (we hope) successful vaccine(s) against SARS-CoV-2, a robust anti-vax movement represents another barrier to recovering a more normal world. I feel like I was near the heart of the matter when this movement first manifested. The following is an adaptation and update of a post I originally published nearly 10 years ago on “The Scholarly Kitchen.” Sadly, the story remains relevant, as what occurred in the early days of the anti-vax movement seems to represent the playbook that’s been used ever since, including some of the same people.

I worked at the American Academy of Pediatrics in 1998, when the first tremors of the vaccine-autism conflation rumbled through medicine. Andrew Wakefield et al had just published a case series from which the notion was plucked that MMR vaccines were linked with autism. I distinctly remember sitting at my desk as the physician-executives raced by, talking about thimerosal and vaccines, their normally calm demeanors riven with worry.

These people remain in my mind at the pinnacle of well-meaning and well-intentioned physicians. It was remarkable to see them thrown into fits of sincere anxiety, not for themselves, but for their small patients. They could smell trouble on the wind, having witnessed first-hand the benefits of vaccination in reduced sickness, suffering, and death — from polio, measles, smallpox, rubella, and mumps. Iron lungs, crutches, complications from rubella in children (deafness, cataracts, heart defects, brain disorders, mental retardation, bone alterations, liver and spleen damage), and other lifelong problems were things of the past, and childhood mortality had been significantly reduced.

There was a lot at stake if people started thinking vaccines were dangerous.

As a result, weekend meetings were held, conference calls urgently scheduled, and policy statements rapidly revised.

The concern was palpable.

Yet, the feeling that something wasn’t quite right permeated the proceedings. A very serious worry had emerged in the literature, yet the evidence seemed spectacularly — almost suspiciously — novel. But it was impossible to indulge that sense of doubt in any obvious way once things got rolling and the media became involved. It soon became clear that the vaccine-autism debate was going to be a long slog, but the science seemed to be on our side.

The profession was put on the defensive, and had to prove that thimerosal and vaccines didn’t cause autism. They used scientific studies to unequivocally demonstrate that the association didn’t exist. However, multiple longitudinal studies and meta-analyses debunking the link between vaccines and autism failed to quell the activist- and media-driven conflagration. Even a retraction of the bedrock study failed to put an end to a public perception linking vaccines to autism.

How Antivax PACs Helped Shape Midterm Ballots | WIRED

When scientific consensus proved ineffective in changing minds in the media, another tactic was taken — painstakingly demonstrating the whole thing was a fraud perpetrated by vainglory, greed, and institutionalized foolishness. Excellent investigative reporting in 2011 by the BMJ did just this.

How much fraud went into the original Lancet paper, which launched the controversy? According to the BMJ:

. . . not one of the 12 cases reported in the 1998 Lancet paper was free of misrepresentation or undisclosed alteration, and that in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal.

The sad, sordid history of the vaccine-autism link is tainted with money, hubris, and naiveté. Wakefield, the physician most associated with the scandal, received money from a lawyer (Richard Barr) with a pet theory about vaccines. But this money was laundered through medical school grants and the like so that when it was disclosed in the literature, it wasn’t seen as money from a lawyer but as money from the “Special Trustees.” As an article from the BMJ‘s reporting on the scandal states:

. . . when the Lancet paper was published, in February 1998, and the scare was launched at a televised press conference, nobody was aware that                                   Wakefield was receiving substantial personal payments from Barr.

The goal the lawyer, Wakefield, and other physicians involved shared was to start a company that would market an expensive assay to detect problems stemming from vaccine complications, and thereby get rich. The funds used to pay for the initial study represented seed money the lawyer advanced to the physicians. In addition, the parents of the children were seeking compensation for the “damage” vaccines had done to their offspring, an idea that seems likely to have also sprung from the lawyer or one of his ilk. Greed isn’t something only rich physicians fall prey to, but in this case, the physicians definitely contributed to the families’ perceptions of exceptionalism:

None of the families were from anywhere near London, and one had flown in from California. They had been targeted, pre-selected for the children’s symptoms.

Interestingly, while the lawyer funded and fueled the study, there is no evidence he urged or participated in the deception except through personal vulnerability to delusional thinking based on an anti-vaccine belief.

This is perhaps the most telling aspect of all — raw motivations like greed, pride, and vainglory were enough to make ethically susceptible scientists distort their findings and create a damaging scientific fraud.

The media were recruited from the start, as detailed again in the BMJ coverage:

Neither school nor hospital stood on the sidelines. They threw their weight behind Wakefield. In the build-up to the press conference, they installed extra phone lines and answering machines to field the expected panic, and distributed to broadcasters a 23 minute video news release showcasing Wakefield’s claims.

“Extra phone lines” is something you wouldn’t need today.

The anti-vax movement percolated for a few years, and then broadband Internet hit, Google’s AdSense began to reach critical mass, and Jenny McCarthy  provided “celebrity chic” to a growing conspiracy theory.

With these pieces in place — bandwidth, AdSense, and McCarthy — the Internet began consolidating, amplifying, and broadcasting a great deal of the misinformation being propagated about the vaccine-autism link. Prior to circa 1998, Wakefield’s paper would have vanished beneath the waves. With the Internet, an algorithm, and a celebrity, it took on a life of its own.

In a presentation I’ll never forget, Scott Karp diagrammed how organizations like the American Academy of Pediatrics and the CDC were unable to get their good information to the top of Google searches on the topics. Part of this was their failure to effectively use search engine optimization (SEO), there’s no doubt. But since then, we’ve learned it’s best not to blame the victim — the algorithms Google had in place to optimize AdSense were built to drive clicks, so more outlandish and divisive information was being pushed to the top.

When Jenny McCarthy’s son was diagnosed with autism (he has since “recovered”) and she went online to learn about it, biased anti-vaccine information greeted her on the first two pages of Google results. Already, Google’s algorithm was peddling misinformation to drive clicks.

And this is how the anti-vax movement first got baked into online infrastructure.

Some very real harms have been the result, including resurgences of preventable diseases. Measles outbreaks have occurred repeatedly, killing tens of thousands annually (~207,000 deaths from measles occurred in 2019 alone). Mumps rates briefly soared in 2009 to pre-1990 levels before settling down again. Rubella, fortunately, didn’t come back in  any appreciable way. The most dire public health impacts were blunted by the vigilant work of honest vaccine scientists, good parents, caring pediatricians, and sensible health officials. But it’s been exhausting and demoralizing for many.

There’s a lot to be taken from these events — peer-review’s Achilles’ heel remains fraud; editors seeking novelty at the expense of quality should rethink; retractions should occur more quickly; health reporting continues to drive sensationalism over rational answers; authors can be unethical and self-serving; fraud continues in the author ranks because notoriety and novelty continue to garner outsized rewards; and money is the root of all evil.

But something else has changed in the authorship ranks, I think. Given the past few years and the explosive growth of social media since I first wrote about this in 2011, a quote from David Brooks I featured in the original  (with the word “science” substituted for the word “politics”) seems even more chilling, as it speaks to the monsters that can be created from a culture of personal exceptionalism:

. . . over the past 40 years or so we have gone from a culture that reminds people of their own limitations to a culture that encourages people to think highly of themselves. . . . So, of course, you get narcissists who believe they or members of their party possess direct access to the truth. Of course you get people who prefer monologue to dialogue. Of course you get people who detest [science] because it frustrates their ability to get 100 percent of what they want. . . . They feel no need for balance and correction. Beneath all the other things . . . the most important is this: The roots of modesty have been carved away.

This brings to mind how scientific publishing has veered toward a performative act — one steeped in funders and authors being indulged by friendly systems, in ways that sometimes feel like collusion, especially when funders run their own journals or draft papers are posted without scrutiny yet given all the trappings of a fully published scientific report. This has allowed blatant conspiracy theories to be published, and marginal content to be exploited by extremists and conspiracy theorists. None of this is helping shore up trust in science, scientists, or public health policies.

In the past year, anti-vax conspiracies have been joined by anti-mask conspiracies. Money from nation-states and private interests have supported these groups. Individuals like Robert F. Kennedy Jr. and Donald Trump have supplanted Jenny McCarthy as celebrity voices misleading people about vaccine safety and public health measures. Wakefield is also still playing a role, and his one-time girlfriend — model Elle McPherson — is a vocal anti-vaxxer. And the same strange brew seems to be present — dark money, exploitation, lies, celebrity, miscreant algorithms, arrogance, and ignorance — but this time, it appears to have more intentionality and structure than before, deeper pockets, and shameless public displays of support. It’s like the MMR anti-vax moment was a sketch for what has since developed into a full-fledged Broadway musical.

We have to fix the parts of the information system we can, but we seem to have lowered our guard since 1998. Meanwhile, the larger media landscape is more prone to amplify any available lies or misinformation, pressing these into filter bubbles we barely register but which are proving destabilizing. Instead of just Google this time, we have Facebook, Twitter, WhatsApp, and Parler, all at different stages of weaponization — but weaponized and non-normative nonetheless. As Peter Hotez, the Center for Vaccine Development at Texas Children's Hospital, said in a recent interview:

If we’re going to really achieve that 70% herd immunity, which is what our estimates that we came up with, together with our colleagues at City University of New York . . . we need to figure out ways to better communicate about vaccines and the importance of vaccines and really start doing something about this very aggressive anti-vaccine movement that’s now morphed into a wide-scale anti-science machine — or empire or confederacy — that really dominates the Internet and dominates American life right now. We’ve got to figure out a way to begin dismantling that.

The challenge facing us around anti-vax conspiracies is an order of magnitude greater. This is not the last infectious disease pandemic we will face. Let’s start mending the information system so it’s healthier — and not weaker and sicker — in the next few months, and in preparation for the next time around. Or we’ll experience another 20 years of preventable disease and death because we weren’t strong-willed enough about pursuing and defending science and public health from the start.

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