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, September 30, 2012

Please Listen AND Hear AND Deliver

We have a lot of organizations and institutions that say that they are listening, especially to the most important stakeholders in the fight against ALS -- those with the disease.  Perhaps they are listening, but are they hearing?  Are the messages too difficult for them to handle?  Are they willing and able to deliver once they finish with the listening?

Here are two examples that make me wonder.

1. A man with ALS made some specific suggestions on how to improve the U.S. National ALS Registry.  Click here to see his presentation.  I don't agree with everything he suggested, but surely he identified some of the root problems and some simple solutions.  Since that presentation, we see a new iPad app accessible on the Registry home page for finding ALS clinics and resources.  The patient simply suggested simplification of that page.  Oh, do we recall correctly that ALS clinics were provided with non-Apple tablet devices to help patients with Registry enrollent at clinics. So much for consistency.  The stakeholder with ALS who made the helpful recommendations has since died.  And so it goes.

2. Several women with ALS who had participated in the Dexpramipexole phase II trial have reported being spurned from continuation in the open-label phase that they had counted on.  One's rejection had been because of an inability to travel to the trial site, yet the open-label trial description clearly has options for patients who can't travel.  Her travel rejection is since being reconsidered, but why do patients constantly have to step up and fight a system when they are already fighting a beast of a disease?  And so it goes.

Listening, eh?  Please give us reasons to be more confident that institutions and organizations are listening, hearing, and can deliver efficiently. Please.

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