ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, May 28, 2018

The Corn Maze We Call ALS


I've never understood why someone would pay to enter a corn maze. Why would you want to become totally disoriented, having to learn the hard way at each decision point, receiving no clues along the way from people who navigated before you, and never sure how or when or where you will finish?  Oh, and then the next person gets to be as confused as you.  Fun?  Not for me.

Perhaps it's because I've already done the ultimate corn maze -- ALS caregiving.

Families dealing with ALS work hard and do research and discover the same things that other families discovered two years ago or two months ago or two hours ago.  They waste precious time going down disorienting wrong paths.  Sometimes they later find that others knew things that would have saved that them from the dead ends.

And the maze gets even worse when we have multiple places to look for sometimes conflicting information. Think about a registry that notifies people that they should also register in a different registry. 

Last week with the passage of the federal Right to Try legislation,, a new maze was dreadfully apparent.  Families were calling support organizations and drug companies and individuals, trying to find out what they might be able to try and how soon they could try it. Who knew fact from rumor?  Who got a real answer from someone?

You see, there is urgency here. People are dying. 

We need a central clearing house for objective, accurate, and timely information on the three paths that people with ALS now have to access experimental treatments, and we need it immediately.

For every candidate drug (having already passed a Phase 1 trial and currently in a Phase 2 or 3 trial), families need to know at a minimum --

  • Is that drug developer currently seeking clinical trial volunteers?
  • Will the company consider an Expanded Access Program?
  • Will the company consider Right to Try access?

Think of how efficient it would be for families dealing with ALS, support people, healthcare professionals, and therapy developers to know even these basics.

Maybe start with a simple public spreadsheet.  Grow to a good database as it gets traction. Add transparent information about how programs work (criteria to participate, locations, costs), and we would actually have refreshingly efficient information for people to deal with ALS and to take advantage of appropriate paths to experimental treatments.

Until then, step right up to the entrance of yet another corn maze that will waste the precious time of everyone involved in a disease that makes you pay a terrible price for wasting time.


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