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.

Thursday, June 14, 2018

The Picture Words Paint


The story has been repeated dozens of times.  A CEO at BIO last week told of a daughter of a terminally ill woman demanding a drug for her mom under Right to Try.  The picture he painted was of an uninformed, irate, unreasonable daughter.  One irate daughter has become the image of terminally ill people trying to find out how Right to Try access to investigational drugs might work for them.

It's an unfair and inaccurate picture.

This article paints it on an even bigger canvas --

https://www.forbes.com/sites/arleneweintraub/2018/06/13/biotech-executives-fret-over-hassles-and-uncertainties-of-right-to-try/#2c683ac0bc78

"...the resources they would have to pour into handling a potential flood of requests from desperate patients..."(Ah, paint them as desperate rather than terminally ill people trying to discern their options. Desperate.)
"It was just one of 10 Right to Try requests the company had already received." (Wow, 10 whole requests can bring a company to its knees? )
"...but that doesn’t make the burden of dealing with phone calls and e-mails from patients demanding access to experimental products any less burdensome."(Demanding?  Or are most simply inquiring, as would anyone in their shoes.) 
"... countless inquiries from patients..."(Perhaps that's a sign that companies need better outward communications so that countless people dealing with quickly fatal diseases don't need to inquire, one after another.) 
"...patients pestering Lebovits..."(Pestering?  Really?  Pestering?  Did the author actually listen to the call?  Pestering is what the kid behind you on the airplane does kicking incessantly on your seat back.  Asking polite, thoughtful questions about access to NurOwn on a call designed for that purpose is not pestering.  I have verified that "pestering" is not a word that Mr. Lebovits used.)

Communications-savvy companies now have a new challenge to address -- their Right to Try policies. It is not unreasonable, nor are the thousands of families dealing with ALS who simply (and urgently) need to know their options.  

That's a picture worth painting accurately.