Thursday, March 20, 2014

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.

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