Friday, July 1, 2016

Race for Matt Bellina: Part 1

This post is part of my 2016 quest to do 12 races to honor people with ALS who have been inspirational to me. This is Race #5.

"It's like a slap in the face
Especially since he's a veteran
Okay, you wanted him to strap a rocket to his back
And fly around defending the country...
But now, when something's wrong with him
You're like 'sorry, it's too dangerous for you to try that.'"
--Caitlin Bellina, Matt's wife

Here's the thing with ALS. You get it, it's terminal in 2-5 years, and then you discover all the other injustices that exist because people are too busy dying to make a fuss about them. And so they continue.

Matt Bellina was diagnosed with ALS in 2014 at the age of 30. He had been a naval aviator based at the Naval Air Station on Whidbey Island in the Puget Sound when he could no longer ignore the twitching and loss of coordination. After he was grounded, he continued to serve in an administrative capacity until he was medically retired with a rank of Lieutenant Commander. Matt, Caitlin and their two young children then relocated to Pennsylvania to be closer to family.

As you learn in the VICE documentary on HBO, Matt's symptoms date back longer (as early as 2006) which excluded him from clinical trials. That doesn't stop him from seeking anything remotely promising to prolong the time he has with his family.

"I've got a basement full of crap I've tried," I've heard him joke on conference calls.

But recently, Matt got serious and became one of the prime movers in the current Right to Try movement on Capitol Hill.

Now before we get into politics, let's establish some baseline facts: 
  • People with a terminal illness, by definition, will die soon anyway. It's not just ALS -- some cancers, Parkinson's, Alzheimers, Duchenne's, SMA, etc.
  • It takes somewhere between 7-15 years to get a drug through the FDA approval process.
So if we are going to die anyway, why not give us access to experimental drugs that are already in clinical trials? Or are already approved in other countries? We're going to die anyway, so let us take the risk. At least give us the choice. Given the certainty of death on one hand and the chance of living on the other, wouldn't you want the choice? What if it was your child?
  • This argument makes so much sense that 32 states have passed Right to Try legislation -- mostly by unanimous vote.

    Okay, now the politics (deep sigh)...except that I don't really get the politics here. The senators and congressmen that have signed onto S 2912 / HR 3012 are mostly Republican. I can see that -- less government oversight/bureaucracy, more individual freedoms.

    What I'm not seeing is the opposition on the Democratic side. There's just radio silence as far as I can tell. The governor of California vetoed his state's Right to Try legislation because he said that the FDA's "expanded access" (aka "compassionate use") program was sufficient to give patients access to unapproved drugs for serious illnesses. Upon patient complaints that the process took months (which for a terminal patient is much of the time they have left), the FDA "streamlined" the process and Gov. Brown wanted to wait for the streamlining to work (while more people die).

    Now, I'm about as liberal as they come. I get self-righteous with the best of them when it comes to being pro-choice and how I don't want the government telling me what to do with my body...hey...wait a second...

    Deep sigh. Seriously, if someone finds a great argument against this legislation, send it to me and I'll be happy to discuss it here. All I can find is this Boston Globe article about how that's not the whole picture.

    What you can do: if you are so moved to contact your congressional representative, here is a handy guide to who to email or call, along with talking points for what to say. Next week (7/5-7/8) is critical in the legislative calendar.

    Up Next

    Race #5 is tomorrow, the Independence Day Classic 17.76k (get it?) in Charles City, VA. 17.76k = 11 miles, btw. I am doing this race in honor of Matt Bellina, Frank Mongiello, their children and families, and everyone else who is fighting for the freedom to try to save their own lives.

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