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, June 5, 2022

Open the @#$%^& Curtain

Today we wait.  We wait for some therapy developers to do whatever they're doing.  We wait for regulators to do whatever they're doing.  We sometimes don't even know for whom we are waiting.  We just wait.  

The work goes on behind a big, heavy, black curtain.

Imagine a big corporation designing and delivering a new car. There are dozens of sub teams on the project and there may be contracted engineers and test drivers.  Government regulators having a role to play, too.  Do you think that any of those project members gets to go hide behind a big black curtain and do whatever they do, only to come out whenever they get finished?  Do you think that the team is hidden from what others are doing?  Do you think that somebody who needs more time just gets to take more time and tell others to wait?


Even airlines figured out that a flight delay without a reason is disaster for their gate agents.  Tell the waiting stakeholders what is going on.

In the often dysfunctional world of ALS, we have therapies being tested, analyzed, and evaluated for approval.  Is anybody really back there today?  We have no idea of what is going on.  We just wait.  And if nobody is actually back there doing something, we don't know if we're waiting for something that will never happen.  We just wait.

I'm not asking for gigantic regulatory or process upheaval.  Simply provide some basic transparency.  What is going on behind that black curtain.  Who are we waiting for and what are they doing.  We realize that some jobs are difficult and take a long time.  Just tell us what's going on.  Are contracted statisticians working on data for the next three weeks?  Are regulators analyzing public comments for three days?  Are executives meeting with investors for a two-day conference?  Are we waiting for an investigator's hernia surgery?  What is going on?  Or what is not going on?

The mystery of the black curtain gives an awful lot of cover and leads to a lot of misunderstandings. 

Just open the $%^&* curtain and tell us what's going on.