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Lessons from the Measles Epidemics, from Toilet Training to Disneyland: The Power of Social Movements, the Weakness of Fact

By Dr. Arthur Lavin

Nearly everyone is aware of the fact that immunizing children against disease generates controversy.

Not all medical interventions inspire strong opinion.  Take the example of giving an antibiotic for a life-threatening bacterial infection such as meningitis, if the infection occurs, there are typically no strong opinions in opposition to curing the disease.

For both the issue of immunization and of meningitis, an infection threatens, the intervention removes the danger, but in one case, the action moves large groups of people to have strong, often opposing feelings, in the other, the only feelings that arise are an urgent need for the cure.

One force not usually considered when trying to understand the nature of controversy surrounding medical actions, is the power of social movements.

By social movements, I mean the phenomenon in which quite large numbers of people suddenly agree with a certain narrative or perspective, adopt that narrative, hold it strongly, and forge stances that shape actions across a broad swath of a community or nation, or world.

The Example of Toilet Training

One easy example of the power of social movements is the experience every parent has training their child to use the toilet.  I know when we trained our children that I felt it was my wife and I alone in the room deciding what to do.   But I also know the history of toilet training provides dramatic evidence for the fact that as one’s society goes, so we go.

It turns out every society has a story about toilet training.  Some societies think a child is ready after birth, others tell the story that a child cannot control bladder and bowel until age 2 or 3, others see toilet training as an opportunity to teach the child how punishing rules can be.  Depending on the story, members of that community will train accordingly.  And, if the story changes, toilet training changes.

The most dramatic example of such a change in America came in 1962 when a pediatrician in a solo practice out of his home in Cambridge, Massachusetts, challenged the reigning story of toilet training in America, which up to that time was all about thinking a child had to poop and pee on command at about age 18 months.  Kids were routinely spanked if they failed to deliver on demand at set times.   The pediatrician, Dr. T. Berry Brazelton, simply advised about 600 families to let their child find their own path to using the toilet, and then published how successful that approach went.  The paper was an instant success, suddenly the United States changed its view of toilet training, from authoritarian to permissive. From 1962 to today, this new view has prevailed, and nearly every parent across the land trains accordingly, as we did with our kids.  We felt like we were following some deep, personal intuition, but in reality, we had absorbed, along with everyone else, the dominant narrative or understanding of how kids learn to use the potty.

The point here is that many things we do, opinions we hold, are the result of social waves of narratives coming and going.  We are not as alone in our thinking as we would like to think.

Measles and Disneyland

Toilet training may seem like a natural place for the power of social movements working in the absence of fact, after all, how a child comes to agree to put their poop and pee in a toilet is a social decision, relating to how the child relates to others, not really a science or fact-based venture.

But we see the same social forces clearly at work when it comes to immunizations, too.  There is no better demonstration of this fact than the extraordinary shift in US opinion on measles immunization surrounding one moment in time, the 2015 outbreak of measles in Disneyland.  Even though unchanging facts surround the nature of the measles virus, its impact on people who get infected with it, and how the immunization against measles works, the power of social movements expresses itself loud and clear here too.  Disneyland makes this force visible.

The Disneyland event only makes sense with a bit of background.

Some Background Facts on Measles

Measles is an old, old virus, likely coming to humans when we domesticated cows, who get a virus called rinderpest.  Once cows and humans began to spend lots of time together the cow virus evolved to become the human virus, measles, sometime around 500 CE and then erupting into a major epidemic virus around 1100 CE.  From about 1100-1960 measles ran rampant across human communities, killing a rather staggering number of us.  Why 1100-1960?  Because in 1960, the first ever immunization to prevent measles was given to a human.

The number of people measles has killed is hard to really comprehend.  We know from 1855-2005 this one virus killed about 200 million people around the world.  In 1990, the measles virus killed about 630,00 people and in 2011 about 158,000 people.

Two events have had a huge impact on dropping the number of people who die from measles.  One is good nutrition.  Malnutrition, particularly Vitamin A deficiency, but also general malnutrition makes measles 1000 times more deadly.   Well-nourished children who get measles in places like the United States, die at a rate of 1 per 1000 cases.  In malnourished communities, about 10 percent who get measles will die.  So as malnourishment ends, the number of children dying of measles drops.

But the other reason that measles will not kill 200 million people from measles by the year 2069 is the measles shot.  In every community that measles immunization is introduced, the number of deaths from measles drops, and as immunization rates increase, the number of deaths goes to ZERO.  This was the case in the United States, where by the year 2000, the CDC was able to to tell us that measles was no longer endemic in the US, only occurring in epidemics.  An endemic disease is one that is a regular part of the background of illness in a society.  A great example are colds.  They are always around, and so, colds are endemic.  Imagine if people stopped having colds, ever, except for infrequent outbursts, then the illness would cease to be endemic and would only happen in outbreaks, or epidemics.

In the United States, measles ceased to be endemic in 2000, but epidemics still erupt.

The Lead Up to Disneyland- The Power of A Great Hoax

Those are some key basic facts about measles, so now on to Disneyland.

The social realities surrounding measles are intensely interesting.  For most of the history of measles, the response communities of people had to measles was to be quite worried about it.  With the disease killing more than a million people, mainly children, a year around the world for the 150 years of 1855-2005, there were no controversies, all parents were united in deeply hoping that there child would not be killed by the disease.

Then in 1960 a new phase in the story of social perceptions of measles began.   As with the introduction of the polio vaccine in the 1950’s there was a tremendous social surge of interest in the measles vaccine.  Finally, an action was available that would end any child dying from measles.  This period of broad social agreement, moving from years of united dread, to years of united hope, lasted until 1998.

In 1998, a British doctor along with 12 colleagues published an article in a highly regarded medical journalThe Lancet, reporting 12 cases of autism following being given the measles immunization, MMR, and claiming they had proven measles immunization causes autism.

Three years later, 10 of the 13 authors published a denial that they had proven that measles immunization causes autism.   But it took the world 13 whole years, until 2011, before Dr. Wakefield was fully exposed as a charlatan whose data had been made up, and whose conclusions were entirely without any connection to fact.   His medical licences was revoked in the UK and he fled prosecution by leaving the country.

So, from 1998-2011, a hoax thrived across the world, a hoax in which a licensed physician, with colleagues, knowingly published a false claim.  But it took hold, and lit a mammoth social movement.  Because at the same time the hoax perpetrated against the public mind, autism was becoming far more common amongst our children.   Science had no answer at that time for why, and so all of us worried about the rise of autism were susceptible to ideas that offered to explain it.   In short, millions of people believed, and held that belief very, very strongly, that giving a child a measles vaccine would cause autism.

Did it?  No.

Every reasonable study on the question finds children who do not get the measles vaccine develop autism at about the same rate as children who get the measles vaccine.  Further, the modern rise in the chances of developing autism began around 1990, but measles immunization was widespread by 1964.  So, if giving millions of children measles vaccine did not increase the chance of developing autism, and then during the current rise in autism not getting the measles vaccine did not decrease the chance of developing autism, how can the measles vaccine be considered to be playing a role.   Only via the rather extraordinary Wakefield hoax.

During the time that the developed world was consumed with worry that the measles vaccine may cause autism somehow, from 1998-2011, there were deep social movements of sympathy with families who decided to refuse the use of MMR for their children, and by extension, those who refused all immunizations.   Evidence of such sympathy was found in the lack of any broad public response to a number of measles epidemics that started flaring as  more and more parents refused to allow their child to get the MMR.  In 2008, the United States experienced three large measles epidemics, mostly because of the number of children not immunized.  In 2013, the United States experienced 11 epidemics, and in 2014, 23 measles epidemics.   Most of these outbreaks were reported in the public, but none of them generated any overall change in attitude across the public.

This broad based sympathy even found its way into the practices of a number of doctors who saw the popularity of fear of immunizations and decided to make some money at it.  Millions of books were sold, the doctor authors got to appear on TV, become quite famous, developed large followings, all by fanning the worries about immunizations.

We doctors and scientists were aghast, at seeing so many people get the measles infection, knowing that some children would die, and for no very good reason.

But even the prospect of children needlessly dying failed to generate any social movement against this needless loss of young life.

Until 2015.

Enter Disneyland

In 2015, the United States experienced yet another measles epidemic, not very different in nature from many of the others following the Wakefield hoax of 1998.  But this time, the epidemic happened about 4 years following the complete exposure of Wakefield and his claims as the work of a charlatan.  It appeared that this was long enough for the impact of the hoax to finally wear off.  So when, in 2015, 147 children came down with measles, tracing this epidemic to a person visiting the US from overseas and while in the US, visiting Disneyland, it was as if an explosion was set off.

From that day in 2015 when news of the Disneyland measles epidemic hit, to this very day, a massive social movement was launched.  Millions of Americans experienced a visceral sense of outrage that young children would be subjected to a potentially fatal illness purely at the wish of their parents.  The outrage developed waves, including the dramatic rise of anger that children who were not immunized were igniting epidemics that could threaten even children whose parents completely immunized them.  Epidemics burn, and can infect even some who are immunized.  Only when a society reaches a level of sufficient percentage of people immunized do epidemics cease to occur, ensuring the safety of even those whose children are immunized.

At that time, in 2015, only one state in the nation made it illegal to allow an unimmunized child to attend public school with only a parent’s opinion to support that fact.  That state was Mississippi.   In sudden fashion after the 2015 Disneyland measles epidemic, California passed the same standard as Mississippi, a sequence on passing laws not commonly seen. As of February, 2019, three states, including MS, CA, and now WV ban parental exemption for allowing kids to attend school unimmunized, and now 8 other states are contemplating similar legislation.

Pediatricians were never asked if their offices cared for children who were unimmunized, but after 2015 and Disneyland, not only are parents asking to see if it is safe to come to the office, but for the first time in modern history, doctors are terminating care for families who refuse immunizations.

All this followed the measles epidemic of 2015 at Disneyland.

Facts, Movements, Narratives

The above story dramatizes the impact of social movements driven by narratives.  Neuroscience has made it clear that we live by our narratives.  That is not a bad thing.  I hope not, because every one of us, surely I, have a set of narratives, our way of understanding, of a wide variety of situations in the world.  We each have our own story of our childhood, and family, and work, of our politics, religion, and society.

Yuval Noah Harari has written extensively about the power of narratives.  His books include Sapiens, and Homo Deus.  One of his best presentations on the power of narrative can be viewed at this link: https://www.youtube.com/watch?v=UTchioiHM0U&t=4100s.

Take a look at Harari’s presentation, and if you can, read the essay above, you will see that social movements clearly flow from the stories, or narratives, we use to understand nearly every situation, and how quickly those narratives can change, creating dramatic and rapid changes in broad social movements.

Despite the power of stories and narratives, sometimes facts remain fairly stable as moods, feelings, and even understandings change.  We see this with toilet training.  In 1962, when toilet training changed dramatically across the whole nation, all in a few months, the actual facts of infant and toddler bladder and bowel anatomy, the times the muscles of these systems develop control, did not change at all.   But how we toilet train changed, in a big way.

Just so with immunizations.  Before the immunization was invented, after it was invented, when the immunization was wildly popular, when it became suspect for autism, after that suspicion was revealed as a hoax, and even now when the feeling for measles immunization is rapidly intensifying, the basic facts never changed,namely:

  1. Measles is a disease caused by the measles virus.
  2. The measles virus is one of the most contagious of all germs.
  3. In very healthy, well-nourished babies and children, even those with great vitamin A levels, in well-off societies, about 1 in 1000 will die who get the infection.   A far higher rate is seen in poor countries where malnourishment is high.
  4. About in 10 to 100,000 people infected with measles will develop SSPE, a catastrophic inflammation of the brain that causes permanent devastating damage.
  5. If you are immunized for measles you nearly eliminate the chance of dying of the disease or being incapacitated by SSPE.
  6. If enough people in a nation are immunized for measles, measles will cease to occur in that nation, unless someone with measles from outside the country visits.

These facts have been true for a very long time, the first 4 have been true since measles appeared in humanity about 1,500 years ago.  The last two facts have been true since the immunization was invented in 1960.  All these facts will be true for as long as measles and its immunization exist.

But social movements and the narratives they rest on, shift.  Today one force that can keep many going, even when facts rise up to challenge them, is the Internet.  The Internet allows any group of people to band together around any narrative.  If enough people take on the narrative and make it their own, a social movement is born, and can be sustained in the face of any challenge.  We see the power of Internet grouping to forge deeply held, impervious to conversation narratives sprouting up in all walks of life, not just with immunizations of course.

BOTTOM LINES

  1. As noted above, measles is a real disease caused by a real virus, that even in 2019 can cause death or disability in a healthy well-nourished child.
  2. Social movements define how communities and nations immunize their children.  These movements come and go along with the narrative the various groups in the society hold true at any point in time.  As noted above, just looking at the history of measles and its immunization reveals a number of narratives that have come and gone, and some that persist.  The Internet is allowing more social movements to persist longer with more durability.
  3. At Advanced Pediatrics we see the measles and measles immunization from the following perspective:  We urge all families to have all their children immunized against measles at the very earliest date the immunization will work.  For those living in the US that is 12 months old, for those traveling outside the US to measles active areas that is 6 months old.  We urge all children to complete the series of measles immunizations recommended, namely a second one if the first was at 12 months old at least a month after the first, and these same two doses following any dose prior to 12 months old.  The only reason we would not recommend this approach is if the child has a medical reason not to receive it.
  4. At Advanced Pediatrics, we recognize that if we care for 100 families, we will be in conversation with as many as 100, or more, different understandings of measles and the immunization.  We welcome all to discuss their perspective, and hope we can make as many people as possible comfortable with giving their child(ren) the protection they need, particularly since measles is roaring back in the US and world, right now.

To your health,
Dr. Arthur Lavin

 

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