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Vaccines save lives, misinformation about those who don't vaccinate doesn't (12 minute read)

This week, my planned article on gene technology wasn’t ready, so it will come at some point in January. Instead, I’ve written about an issue I’ve been following on social media lately.

I don’t usually get involved in debates on social media. Partly, this is because I find it too stressful and partly because I’m not a social media fan in general. For the last year, I’ve spent minimal time on social media – the main thing I do is identify poisonous plants for people.

However, I know that I need to promote my work more and that a social media profile can help. So, about a month ago I joined BlueSky. It’s a lot like Twitter used to be a very long time ago, as far as I can tell, and so far the experience hasn’t been too bad. I’m following lots of scientists and reading about their work. I’ve been seeing cute penguin pictures, getting updates on bird flu in the USA and hearing about important news like the fall of Syria’s murderous dictator.

There’s also quite a lot about American politics, none of it reassuring. Among the most troubling discussions is what might happen to the health of the USA, and the world, when it’s in the hands of someone who has spent decades campaigning against vaccines and is advocating raw milk while bird flu spreads through American dairy herds. It’s the kind of situation which could have worldwide consequences. We could be facing a surge in preventable deaths, particularly among children. And death isn’t the only possible consequence of the childhood diseases we have largely kept at bay for many decades. Diseases like measles, rubella and polio can have lifelong impacts.

My mostly civil social media space is filling up with discussions about vaccination, and I’m getting a sense of déjà vu. I’m seeing something of what I saw when the COVID-19 vaccines became available. Misinformation is rife. Social media is becoming an environment which whips up fear and anxiety about vaccines. It’s only likely to get worse.

But I’m on a social media site with lots of scientists and people interested in science. Why, then, do I say that I’m seeing it flooded with misinformation which whips up fears about vaccines?

The misinformation I’m seeing is not about the safety, or otherwise, of vaccines. It’s misinformation about the reasons people may choose not to get vaccinated, or not vaccinate their children. I’ve previously looked at this issue in some detail, because it’s closely connected to issues I have worked on – risk communication, decision-making and trust. I get passionate about it, because I can understand what’s going on and can see the impact it has on everyone’s health. I’m passionate enough to have tried to counter some of the misinformation by getting involved in discussions online. I quickly realised that people are pretty attached to their misinformation. So, I thought it would be worthwhile for me to pull together my arguments and sources, and prepare some information in advance. The situation is only going to get worse when the USA gets its new president and health secretary, and so I hope that this information will be useful to others as well.

I’ve included a range of resources in this article, but if you look at only one, watch this Ted Talk from anthropologist Heidi Larson.

Heidi Larson: Why rumors about vaccines spread -- and how to rebuild trust | TED Talk

I’m going to get to exactly what that misinformation is, and the impact it has, in a moment. First, though, I want to explain briefly what the evidence says. I’m following the guidance on how to talk about misinformation and presenting it in a “truth sandwich” – making sure that I present factual information both before and after I mention the misinformation.

There are several ways to look at the reasons people may not get themselves or their children vaccinated, but I’m only going to describe two here. The first is “it depends”. Vaccine hesitancy, as it is termed by those who work in the field, is complex and context-dependent. One person may have multiple reasons for being hesitant and their reasons won’t necessarily be the same as someone else’s. This might sound vague and unhelpful, but when I get to the misinformation, the value of this way of looking at the issue should become clear.

Although there are many different reasons for vaccine hesitancy, all of these reasons tend to fall into one of three categories: confidence, complacency and convenience. This is the second way of looking at the issue and it’s particularly useful. Confidence is a matter of whether people trust the vaccine or, more importantly, those who are offering them the vaccine. Complacency is the perception that getting vaccinated isn’t important, or at least it isn’t important right now. Convenience relates to how easy or difficult it is for people to get vaccinated. Sometimes, instead of convenience, people refer to constraints, because it’s a fairer way of describing the situation. Convenience makes it sound as if people simply can’t be bothered, when they may face some significant hurdles, such as not having any means of transport to reach a doctor.

There’s so many factors which influence decisions about vaccines, these are only a fraction (image credit: Melanie Newfield)

But that’s not what people say on social media. Almost every discussion I see related to vaccines has at least one statement implying that those who oppose vaccines or don’t vaccinate are stupid. I don’t have hard data on it, but stupidity seems to be the most prevalent piece of misinformation about the reason for not vaccinating. Another reason I frequently see stated is that anti-vaccine views are a problem for wealthy countries where serious infectious diseases are rare. Such views are seen as something recent and born of privilege and entitlement. Those who are less well-off and facing real threats from infectious disease wouldn’t refuse a vaccine, according to social media.

There’s a small grain of truth in here, because complacency is one factor, but most of the previous paragraph is pure misinformation, just like the thoroughly discredited links between childhood vaccines and autism or between COVID-19 vaccines, 5G and microchips. This misinformation stigmatises those who are uncertain about vaccination, but it doesn’t make them more likely to get vaccinated.

So, what does the evidence really say about the reasons for vaccine hesitancy?

Vaccine hesitancy has been around for centuries

Anti-vaccine beliefs date back to the earliest days of vaccination. When Edward Jenner introduced his smallpox vaccine at the end of the 18^th century, it provided protection from what was then a prevalent and lethal disease. But people weren’t lining up around the block to be vaccinated. Parish officials – the local government of the day – debated whether it should be permitted in their area. Anti-vaccine cartoons appeared in newspapers, particularly when governments began to make vaccinations mandatory. Many people preferred alternatives such as variolation, which involved exposure to the actual smallpox virus – a practice which killed one out of every hundred people who used it.

Vaccine hesitancy is worldwide, but not evenly distributed

Anti-vaccine views are not confined to wealthy countries where children seldom die from infectious diseases. The global campaign to eradicate polio went badly off-track in northern Nigeria in 2003 and then again in Pakistan a few years later. Vaccination rates have fallen in the Philippines, Venezuela and Libya over the last decade. Samoa had a huge drop in vaccination rates in 2018. These are not places where people are complacent about childhood mortality and disease. On the other hand, France has also seen large drops in vaccination rates.

Vaccination rates fell for different reasons in each of these countries. I’ll look at a few of them in more detail, because they illustrate some of the other reasons people may not vaccinate.

Vaccine hesitancy is often triggered by specific events

By 2010, Pakistan was polio’s main stronghold. Nonetheless, health workers were risking their lives to deliver the vaccine to the most remote areas. They had even vaccinated children inside the Abbottabad compound where US intelligence services suspected Osama bin Laden and his family were living. This gave the CIA an idea. A truly horrible idea. An idea which still disgusts me to this day.

They faked a vaccination campaign against hepatitis B in order to get people inside bin Laden’s compound. The CIA actually vaccinated a whole lot of children in Abbottabad with the first dose of the vaccine. As far as I can tell, though, they didn’t give them the follow-up doses needed for the vaccine to work properly.

Within a year of this fake campaign, local leaders had banned the polio vaccination programme. Attacks on healthcare workers began to rise, leading to a wider suspension of the programme. Polio began to increase.

I’m no believer of conspiracy theories, but occasionally they are true.

Here’s my article which covers Pakistan (and also Nigeria)

Humility and hubris - by Melanie Newfield - The Turnstone

In discussions about the incoming US health secretary, I’ve frequently seen him linked to the 2019 measles epidemic in Samoa, which killed 83 people, most of them children under 5. It’s true that he contributed, and probably played a significant part, despite his denials. But something else triggered the dramatic loss of confidence in vaccines in Samoa. In 2018, a baby died minutes after receiving the measles vaccine. A couple of hours later, despite the anxiety of the parents who’d heard about the previous baby’s death, vaccine from the same batch was given to another baby. He also died.

It was later found that when preparing to administer the vaccine, the nurses involved had mistakenly mixed it with a muscle relaxant drug, instead of sterile water. The babies had been killed by the drug, not the vaccine itself, but after these deaths it’s hard to blame anyone who didn’t want to vaccinate their children. Misinformation spread by vaccine opponents certainly didn’t help the situation, but they found a population ready to believe their misinformation because of those two tragic deaths.

Here's an interview with the parents of those babies. It’s difficult to watch, but important.

Fatal botched vaccine was against parents' wishes

Vaccine hesitancy thrives on political polarisation and mistrust

Anti-vaccine sentiment in Nigeria had its origins in the tension between the country’s Muslim north and Christian south and dated back to the 1980s. On the whole, people in the north had less access to healthcare and were less likely to trust it. So when healthcare workers suddenly started going door-to-door offering the polio vaccine for free, people were suspicious. Why were they being offered something for nothing? Even worse, the vaccination campaign had strong backing from the USA, a country which many Nigerian Muslims saw as being anti-Islam in the wake of the invasions of Afghanistan and Iraq. Something just didn’t seem right to people. Rumour spread of a plot to sterilise girls and the governors of three northern states told their citizens to boycott the polio vaccine.

The key point here is that people didn’t trust the vaccine or the people delivering the vaccines. And this lack of trust was well-founded for a whole range of reasons. Despite this, within a couple of years Nigeria began reversing the anti-vaccine sentiment which halted the polio eradication campaign. It was a stunning achievement and one I encourage public health workers in the USA to study. It shows how a deeply polarised country can reverse a crisis in public health.

There’s even more to it than this – if you want to know more there’s an excellent paper by a Nigerian academic on the subject – I’ve put the link below.

What Led to the Nigerian Boycott of the Polio Vaccination Campaign? | PLOS Medicine

People who don’t vaccinate their children usually do so out of love and care

I’m sure there are people who are shamelessly lying about vaccines to further some agenda. But many parents, probably the majority, who don’t vaccinate their children make this decision from the best of intentions. They aren’t bad parents who simply don’t care about their children or others. They want to make the right decisions for their families.

Ethan Lindenberger, an American teenager who caught the media’s attention when he got vaccinated against his mother’s wishes, makes this point eloquently. It’s well worth listening to the short TED Talk he gave.

Ethan Lindenberger: Why we need to fight misinformation about vaccines | TED Talk

Turning around a situation of deep, mutual mistrust is unlikely to happen over social media but we need to act as if it can

I’ve spent years speaking with people about different kinds of risks. I’ve had the experience of explaining something and having people immediately understand what I’m telling them. But I’ve also struggled to communicate with people and get my point across, particularly when I was working inside government and advising decision-makers.

What I learned in this time was that my struggle was founded in mutual mistrust and the core of that was a mistrust in each other’s intentions. I didn’t believe the decision makers cared about what I cared about, while the decision makers didn’t believe I cared about all the difficulties and constraints they faced in making a decision. The situation only improved when I recognised that we did actually care about the same things, and began to focus on this common ground.

Situations such as the one I experienced or the one faced in Nigeria with the polio vaccine boycott weren’t solved over social media. Nor do I think there’s much chance of even a skilled health professional and communicator changing the mind of a committed vaccine opponent that way. But what we say still matters. In his excellent book on risk communication, Peter Sandman makes the point that when we speak with a committed activist or opponent, we are also speaking to the onlookers, many of whom haven’t made up their minds.

Belittling, insulting or stigmatising those who oppose vaccines or are undecided is counterproductive (even if they are using personal attacks and insults, which many are). We aren’t going to encourage people to listen to our evidence by telling them that they are stupid or bad parents. The next few months, and years, are going to be difficult for public health. We can do without supporters of vaccines making the situation worse.