Did a social media campaign do a wonderful thing to save a boy's life? It's complicated.

On Boston Public Radio last night, there was an interview with Art Caplan, a bioethicist who is a regular on the show and who I consider to be really insightful.  The topic was this seven-year old boy in NC who was dying from complications of his kidney cancer.  A pharmaceutical company was in the middle of clinical trials on a drug that might be able to save his life. 

Even though the drug hasn't been approved and it might in fact not even work, there is a program called "compassionate use" that allows pharmaceutical companies to give dying patients unapproved drugs if it could save their lives.  The company refused the request, which caused quite an uproar.  The family started a social media campaign that brutally attacked the company, which eventually relented and gave the boy the drug.

Great example of the benefits of social media and grassroots campaigns you say?  Well, the story is a lot more complicated than you might think. 

The company developing the drug is pretty small.  Making the drug is very expensive, especially in the small batches required for FDA clinical trials.  What if they give two or three people who are dying of cancer the drug for free.  As a result, they don't have the funding to complete the clinical trial, the drug never gets approved, and thousands of people who could have had their lives saved now are fated to die painful deaths. 

Another important consideration is that the drug can't perform miracles.  Even if the drug works, the boy still might have soon died.  What if the story of the boy's subsequent death made it harder for the company to recruit participants for their clinical trials?  Even if they got some additional funding for the compassionate use, they still might not be able to get the drug through the clinical trial process and approved by the FDA.  Those thousands of lives again would not be saved.

A whole bunch of people rushed to judgment based on a very meager understanding of the situation.  They demanded justice for this little boy.  They demanded that the pharmaceutical company provide the drug.  Why would a "compassionate use" exception even exist if it weren't meant to be used to save the life a this dying seven-year old boy?

Granted, if I was one of this boy's parents, I would want the drug too.  I would probably go to great lengths to get it.  Because quite frankly, my son's life is more important than those anonymous thousands.

But that is why we don't make laws, policies, and regulations based on individual cases, stories, surface level investigations, and what feels right at the time.  I hope that the drug company gets the funding to complete the clinical trial process.  I hope that the drug turns out to work and it saves thousands of lives. 

But whether it does or not, this turns out to be a story that demonstrates how we should not be governing our health care system.

Unconscious links trigger behavior that we would never expect

Many of you know that I am fascinated by examples where people to exactly the opposite of what they think they will do (for example this recent post).  This fascinates me primarily for two reasons:

1.  It shows that what we think of as our conscious mind/executive control is really not what is in charge.  Most of our behavior is controlled by unconscious and even pre-conscious processes.  Then when our consciousness sees what we just did, it comes up with a logical explanation that might have very little in common with the real causation for it.

2.  Even better, when we ask our conscious false-executive to predict what we will do, it is often 100% wrong.  What we do turns out to be the opposite of what our conscious brain thought we would do.  It is not hypocrisy (although it does seem like it).  It is just that the two processes are not connected. 

There is an unconscious part of our brain that runs our daily lives – perceiving the world, making decisions, taking actions.  And then there is the conscious part that is blissfully ignorant of what is really going on, imaging the world the way we prefer it to be (or for depressed people, the opposite), imagining ourselves the way we want to think of ourselves (generally much better than we really are), having idealized impressions of things and people we like, corrupted impressions of things and people we don’t like, and other myths, illusions, and falsehoods.

I am currently reading Jonah Berger’s 2013 bookContagious.  He is a prof at Harvard Business School who does research on these inconsistencies, with the motivation to find out what causes ideas and behaviors to catch on.

One of his examples is a perfect demonstration.  He presented college students with one of two health-related slogans.  Both of them promoted eating 5 servings of fruits and vegetables a day.  One mentioned dining hall trays in the slogan and the other did not.  When they asked the students which was better, the students responded that the one about the dining hall trays was too corny and would not work nearly as well as the other one.  But then they tracked what the students did when they were eating in dining halls that had trays.  The ones that saw the tray slogan ate more fruits and vegetables than the others.  Jonah used a solid research method that controlled for the other factors that could explain the difference.  So basically, the students thought the tray slogan was worse, but it actually was better.  And not only in general, but on the very students that rated it as worse.  All it took was placing an unconscious link between trays and fruits/vegetables that would be triggered in the dining hall.  He has tons of examples like this in his trigger chapter.  A very enjoyable read.