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, April 8, 2018

"Y'all Take Care Of It Yourselves"

"We don't have anything to say right now."


That's the mystifying strategy that a gaggle of large ALS organizations have taken during the most important ALS public policy crisis in decades.

We're in the final week of the comments period on the FDA ALS Draft Guidance.  So far organizations have gone into hiding and engaged in an odd abdication of leadership, telling individuals that it's up to us. They are urging us to submit comments but have not issued any comments themselves.

Keep in mind that this guidance will directly affect clinical trial designs moving forward, and the draft guidance we got does not encourage innovation in trial designs.  If made final, this guidance will in no way speed up drug development or approvals.  

But our largest ALS patient advocacy and research organizations have no official comments.

They turn to us individuals and say, "Y'all take care of it yourselves."

Mystifying.

Disappointing.

Infuriating.

Revealing.













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