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.

Sunday, December 22, 2019

We Need Good Design and Solutions

There are medical ethicists who know an incredible amount about the FDA. access programs. and their history.

There are people living with ALS and their caregivers who know an incredible amount about how access programs have failed to give them access to investigational therapies.

People propose solutions from time to time.

Too often by the time a solution is proposed publicly, all some people can see are the potential design flaws.  All some other people can see are potential benefits.  The blinders are on.  The "I'm right, you're wrong," public arguments begin. 

If a design is flawed, we need more work on how to fix problems.  Everyone's expertise and perspectives can improve any design.  This is a matter of life and death. Imperfect proposals deserve more than arguments.  They deserve the work they need so that people with ALS can finally have some viable solutions.

Please.  Retreating to corners and bickering waste energy and talent.  Blinders off. please, everyone.

We need better design.  We need solutions.


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