Saturday, October 29, 2016

Jim Gant - American Spartan

I meet two incredible people this week.  Jim Gant and Ann Scott Tyson. Jim was a Major in the Green Beret, serving in Afghanistan. Ann is a Washington Post war correspondent, and wrote the book, "American Spartan".  It is the story of their experience, while embedded in an Afghan village.  It is an amazing story, and you absolutely need to buy this book and read it. 
So why am I mentioning it here, on a blog about childhood cancer?
It is because Jim Gant is a decorated war hero, and fought incredible battles against the Taliban.  Those fights were successful, but he also faced enemies more powerful that the Taliban.  Those enemies were his leaders.  It was bureaucracy, money and politics that too often control the U.S. military.  In the end, the very officials that sent him into Afghanistan betrayed him.  
In the war on childhood cancer, our children are the warriors in every battle.  However the same institutions designed to support them can often become their primary enemy.
My son was denied access to needed treatments on more than one occasion.  The argument from was that it was better to let him die, than to attempt a treatment that might kill him.  It is one of the ugly unspoken truths in childhood cancer.  The explanation is money. 
The companies funding clinical trials are attempting to get FDA approval for their drugs. Having a child die on a clinical trial could potentially slow down that approval process.  So access to the trials is limited to only the "healthiest" sick people. Their attitude is "why should we risk our drug approval on a child who might die either way?" They close the door, eliminating hope for any options. 
Pharmaceutical companies say it is not their fault. FDA approval of a single drug can take several years, at an average cost of $1.2 billion.  Allowing high-risk kids into the trials could result in delays or denials of these critical drugs. 
The FDA supports this policy. They claim they are "protecting" us. So how are they protecting the children that die, waiting on the approval? 
Children are denied access to clinical trials during the first two phases of the trial. Those phases take an average of seven years. You would never be happy with a seven-year-old phone or computer.  But the best we can offer our children is seven-year-old medicine. In fact, the majority of my son's treatments were outdated chemotherapies from the 1970's. 
Our government spends $26.4 million a year on childhood cancer research.  That number is less than 4% of the amount spent on adult cancers.  As a result, cancer remains the #1 disease killer of children in this country.  
Our government, in many ways, is pretending to fight a war. We send our young men and women into Afghanistan, but the leadership fails to implement a clear plan to win.   Bureaucracy, money, and politics cloud every goal. 

In the war on childhood cancer, we are doing the same to our children.

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