For almost a year now I have been diving in, and have been kicked out of several anti-vaccination Facebook groups. There is an ever growing community of people who refuse to vaccinate against diseases like Measles, Chicken Pox, Tetanus, Polio, HPV,… It’s become so big that the World Health Organization even named vaccine hesitancy one of 2019’s global threats.

I joined these groups because I wanted to learn how people get convinced to refuse something that has become so engrained in society that it’s self-evident. Vaccinations are one of the greatest accomplishments of humanity and modern science. The vaccination against Smallpox (the only disease we are currently officially freed from) is estimated to have saved 5 million lives a year, and we’re on the brink of officially eradicating Polio. Yet people are starting to take a step back on this progress.

I also joined these groups to gain insights for a book chapter on online radicalisation, where I compared the different group architectures on Facebook and Reddit. TL;DR: moderator authority and group openness differ between Facebook groups and subreddits, which makes Facebook Groups more sheltered against counter-opinions, and subreddits more hardened against counternarratives.

I’m prone to dive into weird online communities, and I think it’s necessary to share the countless discussions I’ve had, the memes that are being shared and the lessons I’ve learned. It’s important to realize how we’re all going to be fucked if we don’t recognize the very real and serious problem we have on our hands.

CAN VACCINES REALLY KILL YOU?

So let’s start from the beginning on understanding where the anti-vaccination movement gets its fuel;

There are very rare cases where a vaccine caused injuries and even death. This is a very nuanced and complex topic and I’m not a doctor so I’m not going to make any statements on this. It happens, but not as often as antivaxxers think, there is an excellent report on how to read the data of reported deaths following vaccination. From countless online discussions I’ve had, I’ve learned to concede that YES; there is a super duper extremely small chance that an injury was caused by a vaccine. The Auto-immune disease Guillain-Barré (GBS) has a very rare occurance for influenza vaccination of 1 in a Million, Meningitis can very rarely be caused by a vaccine with other environmental factors present (couldn’t find statistics) and of course there are very rare allergic reactions to the ingredients in vaccines. Vaccines can rarely indeed trigger (NOT CAUSE) seizures and make epilepsy surface early in life.

But vaccines do not cause most diseases that are linked to vaccination like ADHD, or Alzheimer or diabetes, and they certainly do not cause autism as is widely believed in the antivaxx community.

(the doctor’s office is where Autism Begins apparently…)

The Aluminum in vaccines is also not a neurotoxin that will kill children.

(a popular t-shirt in the antivaxx community)

Medical science isn’t perfect, nor will it ever be, but when it comes to vaccines, we have figured it out to a tee. 90% of the medical community are convinced that vaccines are safe and should even be mandatory. That is a huge consensus. But still, freak accidents can happen, and no one is declaring anything 100% risk free. Nothing in life will ever be risk free. That’s why humans are subconsciously constantly doing risk assessments.

False Correlations, Skewed Probability and Fake Studies

Thanks to the internet, super rare exceptions have been granted the possibility to find each other. In a perfect world, only that small group with actual vaccine injuries would be uniting, people with a rare disease finding comfort with each other.

This is however not a perfect world, and our information society is still going through the growing pains of being able to connect with THE WHOLE WORLD.

Many people have thus started joining vaccine injury groups that don’t belong there. They claim to have a vaccine injury because of the timing of the occurrence, but rarely have actual proof that the vaccine was the cause. An often repeated mantra in arguing with antivaxxers is that correlation does not equal causation. Just because something happened within hours or days from a vaccination, does not mean the vaccination was the cause. In almost all of the cases, the conclusion is drawn by people, not doctors, that it must have been the vaccinations causing their kid’s paralysis or autisms or even death because it happened right after a vaccination. This belief is so strong it has its own name: the Post Hoc Fallacy. Few of them want to understand that there was an equal probability of something like Sudden Infant Death Syndrome happening on any other day of the year.

Yet to come back to the fact that it IS possible in very very rare cases to cause an injury, it opens the gates of doubts; what if it WAS the cause?

This not only offers an explanation for parents with ill or dead children, It also fuels people’s fear to not vaccinate their children. A simple risk analysis of the actual probability would make it clear however that this should not be a factor to take into account. When vaccine injuries can occur in a hypothetical 1 in a million, at a birth rate of 130 million babies a year, that would not be more than a few hundred yearly worldwide (and I’m being generous with my calculation). Compare that to mortality rates of diseases like measles, which are proven to be 1-3 per 1.000 kids who contract it, and Tetanus which has a mortality rate of 10% of those who contract it, a few hundred in the whole wide world is a negligible risk. In 2017 over 110.000 kids were reported to have died from measles while there was already an 85% worldwide vaccination saturation. That is a lot, to say the least, and will become a lot worse if herd immunity starts failing when vaccine rates drop even more, but we’ll come back to that later.

The probability calculation I just made is what made society convinced of vaccinations in the first place. Risk calculations however change when people’s perception of probability becomes tainted. Right now, the internet offers 1000’s of harrowing stories that are linked to vaccines.

Willingly giving your child a shot for something that thousands of others are telling you will kill your child, that sounds insane, doesn’t it? I’ve found hundreds of facebook groups where people find resonance of their fears not to vaccinate, where these type of stories are wildly being shared, where respectfully questioning this correlation got me censured and banned.

It gets even worse when there are so-called academic studies that ‘prove’ that vaccines are the widespread cause of death or autism. There are numerous articles that do the rounds in antivaxx community, often dumps of information that are impossible to knowledgeably sift through. It’s a common technique of bombarding people with ‘proof’.

I’m almost too ashamed to admit, but there was even a moment that I started hesitating when I started reading some of those ‘academic’ papers. They seemed to be methodologically sound and were written in an academic way. I was honestly surprised; these weren’t some mommy blogs. Luckily I gave myself a double check. I am not an STEM scientist, what the hell do I know about medical science’s methodology? When doing a more thorough background check on specific studies and their authors, it turned out none of the methodologies survived peer review. Some of the studies in the dumps didn’t actually prove a causal link and were just filler to get to 157 studies, and a lot of them were based on one fraudulent study: the study conducted by the notorious Andrew Wakefield. This infamous study ‘proved’ a link between vaccines and autism, but was later debunked and was never able to be replicated on a larger scale. (If you want to know more, Behind the Bastard podcast does a great history of Wakefield’s corruption and the birth of the antivaxx movement)

There’s a lot more to be said on the fraudulent research bubble, the only thing I want to still highlight is the recurring argument “why aren’t there any more studies comparing non-vaccinated with vaccinated children?”. There’s a simple (yet unsatisfactory for some) explanation: comparing the antivaxx community with another population has too many external factors that cannot isolate the particular impact of vaccinations on the prevalence of incidents. There is no ethical way to conduct such a study in a controlled environment because, well… people die.

Follow The Money you Sheeple!

To go back to the crux of the hesitation, we need to understand how people confronted with this information process it. When so many experiences of a vaccine injury are floating around and there seems to be ‘evidence’ to support this correlation, there has to be some truth to it, no? So many people can’t be wrong at the same time??

A lot of people get trapped in the clustering illusion. It is human nature to see patterns to structure reality and find explanations for things that are unclear. This pattern recognition doesn’t always draw the right conclusions, which is how people come up with conspiracy theories.This is exacerbated with the human desire to seek out information that one desires; also called the desirability bias. On top of that, people want to believe information that fits their personal views, also called a confirmation bias. Google and Facebook’s algorithmic filtering are excellent enablers for these biases, which is why Facebook groups are so dangerous (but more on that in another post)

Logical rational calculations are skewed when emotions take over.

“But all those doctors can’t be wrong!”. One part I haven’t highlighted yet: why anti-vaccination theorists refuse to believe the medical consensus. To explain why the medical world has been supporting vaccinations despite such a perceived high risk, antivaxxers constructed a conspiracy theory that vaccinations are being pushed by Big Pharma to make money.

This conspiracy explains for antivaxxers why so many people seem to be dying from vaccines while the medical world agrees it’s necessary. There is definitely some unethical behaviour from the Pharmaceutical industry that needs scrutiny, like their complicity in the Opioid crisis in the United States.  But considering the almost unanimous worldwide medical agreement on vaccines, this just does not add up. People will try to find proof for their beliefs, and the internet can provide a support system for those beliefs. It’s a little more complicated than that, but the new information society is partly the reason why there’s currently such a huge increase in vaccine hesitancy.

The tragedy of the Commons

A few people refusing to vaccinate based on this fear would not be such a problem. In a free and democratic society, everyone has the right to choose to make the risk assessment on their own personal health and that of their children. Also, what are the odds on them getting infected and dying?
While the mortality rate of vaccine preventable diseases I mentioned earlier is significant, currently the risk of actually getting infected is very low. This is however not some magical health protection. Antivaxxers are sick of hearing about it, but this is only because of herd immunity.
if 95% of the population is vaccinated, your risks of getting infected are very very low, because diseases don’t spread very far.

This animation ends at 95%, but the percentage actually differs depending on the disease. Measles for example are airborne and can survive for 3 hours outside of a human body. Infection thus spreads a lot easier.

Herd immunity is however dropping and local outbreaks in low-vaccination regions are claiming its victims. The infection and mortality rate is exponentially rising in the last few years. As mentioned in the introduction, the WHO has even declared vaccine hesitancy as a global health threat for 2019.

The consequences of these individual decisions are therefore having a massive impact on global health. This is in social sciences also called the tragedy of the commons:

“a situation in a shared-resource system where individual users acting independently according to their own self-interest behave contrary to the common good of all users by depleting or spoiling that resource through their collective action.”

Basically: people are risking the collective health because of their personal risk aversion.

The lack of empathy which is often claimed to be the demise of modern civilization is having an impact on many fronts. A staple figure for this demise is someone like Katie Hopkins, who recently wrote a piece to proclaim how little she cares about the herd because she’s “just not that good of a person” and is not a sheep. (at least she’s honest)

Who really gets the Darwin Award?

I’ve seen vaccine defenders reply that these people should get the Darwin award, that natural selection will weed them out eventually because they will all get vaccine-preventable diseases and die.

While I understand the need for cosmic justice, it’s pretty sad to wish these people dead. The tragedy of the whole situation is also that they likely won’t have any lasting consequences from contracting a vaccine preventable diseases. There are many weaker members of society who will have a much higher probability of dying if they catch a vaccine preventable diseases. Children who weren’t able to be vaccinated because they are too young, the elderly whose immunity has worn off, immuno-compromised people and people undergoing cancer treatment who would be too weak to fight a disease like the measles or chicken pox. And let’s not forget that very small percentage of people who rightfully received an exception because their likelihood of getting a vaccine injury is deemed too high by an actual medical professional.

Cosmic justice will likely not happen for those endangering their whole community.

We’re literally taking steps back from a situation where we were able to protect weaker members of society as a collective. These are now running the risk of dying again because of other people’s choices to believe in conspiracies.

The burning question is therefore: what are we going to do about this?

Quarantines and stars of David

A lot of governments have been alarmed and are starting to bring down the hammer on forcing people to vaccinate. In Europe, many member states are making vaccines mandatory, and EU members already signed a European Vaccination Plan in 2015 to tackle this issue. There are moves happening in some countries to ban unvaccinated children from schools. This is currently the case in  California, also called ‘Commufornia’ by antivaxxers ,which introduced an obligation to provide a vaccination proof to enter schools. The state was proven right by the courts, fueling the anger of antivaxxers. As emotions are running high on these government decisions, comparisons are being made to fascist states. Some antivaxxers are even making a statement by wearing the star of David to self-identify as unvaccinated.

Aside the gratuitous comparison, I personally find it enormously odd that those refusing to vaccinated are angered for being denied access to public goods. If one makes a selfish decision over the public good, it would seem to me reasonable that they don’t get to benefit from them. Society will fine and even imprison people for not paying their taxes, Western society started fined people who smoke in closed quarters and endanger other’s health. Why would people endangering herd immunity for selfish reasons not receive any consequences?

It’s hard to talk to people about this without casting blame or push them in the defensive. I’ve noticed talking in an empathic but stern way does help, but I think the whole situation will get worse before it will get better.

My (perhaps pessimistic) prediction is that more people will die before the antivaxxers will adapt their risk assessment. They will slowly start to realize that the odds of their kid (or themselves) dying from a vaccine-preventable disease are far greater than the odds of them getting an unproven vaccine injury. They will start seeing that a vaccination correlating with something that was going to happen anyway (like Autism or SIDS) is not significant compared to the proven cases of kids dying from Measles.

If we do nothing, these realizations will only happen when herd immunity drops and more people around antivaxxers will die of vaccine preventable diseases. In the very worst case scenario, we are bound to wait until the OH SHIT moment kicks in.

Educational intervention

We can accelerate that process of course by improving awareness and empathy. Obviously what we’ve been doing education wise isn’t working anymore. When a lot of people get convinced on emotional grounds and through cognitive biases, education based on authority isn’t viable  for everyone; just telling these people what to do because the medical world says so isn’t effective . Studies have shown that it’s not necessarily the uneducated who refuse to vaccinate. Au contraire, it’s the people who have been taught to think critically, question everything and dare to stand up for themselves and say “I’ve done my research!”

(a meme that shows how antivaxxers see themselves)

As long as the internet provides a place where misinformation can live and fraudulent research survives and even propagates, it is perfectly possible to have ‘done your research’ and come out with stacks of proof that fits your confirmation and desirability bias. There exists a whole parallel information universe where everything about the anti-vaccination narrative makes sense. Not everyone trusts established sources like “the medical world” who say the study is methodologically incorrect. If people don’t trust one authority’s inflictions like “take the shots”, they also won’t trust it when it says “this person or this study isn’t legit”.

Most antivaxxers are highly skeptical people; they won’t do something because there is consensus. They see themselves as going against the current. They don’t realize they’re actually ghostriders. Some even believe they’re doing the world a service by fighting the Big Pharma industry.

(a post in an antivaccination group)

What can we do, if we would assume a big portion of those critical thinkers is open to reasoning? In my opinion, we can work on improving their knowledge of statistics upon which they make their risk calculation, push back on anecdotical evidence and increase empathy for those at the risk of dying from vaccine preventible diseases. For this we need to:

• Highlight the death toll of Vaccine Preventable Diseases (especially to weaker children)
• Highlight the suffering from Vaccine Preventable Diseases (for example Measles hack the body and harm its immune system for at least 5 following years)
• Highlight the odds of getting infected and how it increases when everyone starts refusing (explain herd immunity properly).
• Highlight the effectiveness of vaccines (they really DO prevent!).
• Counter the post hoc fallacy with a probability calculation (the odds of an illnesses following a vaccination are just as high on any other day of the year)
• Make academic research more publicly accessible and easier to comprehend through trustworthy media resources.
• Make clear who profits from anti-vaccination attitudes (the leaders of the anti-vaccine movement make a ton in selling books and essential oils etc.)
• Highlight the medical consensus

Facts alone won’t make antivaxxers change their minds, as studies have shown that attitudes are much harder to change and are more resilient to factchecks.

As long as information is processed on an emotional level (which it always does, regardless of how rational humans think they are), there needs to be an appeal to antivaxxer’s emotions. Be it reactance (the feeling that someone is taking away choices or limiting the range of alternatives), or solitude (filling the need for belonging by finding community in antivaccination groups), many of these feelings can be resolved by improving mental health and reintegrating people in a broader community.

The Hard Core

There will however always be a hard core that will prefer to look away from the evidence and stay strapped in their echo chamber.

How do we deal with those? Do we allow society to be tolerant enough for these people’s choices? Can we coexist or will we have to oust them from society? Many antivaxxers are already voluntarily splitting off by home schooling or moving to more antivaccination tolerant regions.

(antivaxxers dreaming of segregation)

This is of course tragic when an outbreak occurs, since it will spread like wildfire in those communities.

It’s something we need to decide as a society how tolerant we want to be. As long as herd immunity is strong enough, we can tolerate their refusal to respect the common goods, as we have always done for that silent minority. But when herd immunity falters and antivaxxers endanger the weaker members of society, it needs to be made clear which consequences their choice has, in the most extreme cases: exclusion from society. I’m hoping we won’t ever have to resort to antivax-stars of David. In a knowledgeable democratic society, everyone should be free to choose, with an appropriate amount of respect for the safety of everyone in our society.

We just need to make sure everyone is truly informed of the risks they pose to themselves and others.