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.

Friday, May 13, 2016

"That Wasn't Patient-Centric"

I thought that after a couple of nights' sleep that my ire would have passed.  It has not.  So I write my conference report.

I arrived for the ALS Association Public Policy Conference on Sunday afternoon.  We got a short presentation of the "ask" for Capitol Hill visits on Tuesday.  It had a surprise.  Hmmm.  No questions were to be asked on Sunday.  "Bring all your questions to be answered tomorrow."  Fine.

I wrote some of my questions down.  ALSA social media said to send your questions with hashtag #ALSadvocacyday . Perfect.  I posted some questions in this blog before I left my hotel for the conference.   http://als-advocacy.blogspot.com/2016/05/its-that-time-of-year-for-some.html 

When I arrived at the conference hotel, our state was assigned to a table in the big room, front and center.  A few minutes before the presentation was to begin, I fired up the iPad and tried to connect to the wifi.  It wanted a password, so I went to the social media conference staff in the back of the room who were sitting at their connected computers, and I asked for the password.  Ah.  There was no conference wifi supplied for attendees, but we could use the free wifi for the Marriott lobby.  So I left my nice table front and center and found a spot on the perimeter of the room where I could catch the lobby signal.  Hmmm.  But I was connected.   Way too far away to get pics of the screens, but fine.   Connectedness was obviously a priority for ALSA's social media staff but not for the patients, caregivers, and individual advocates in the room.  Ironic when one of the legislative priorities revolves around technology.  Oh, well.

Then the conference began.  Two ALSA executives and and CDC Registry employee sitting on the stage.  The format was like a late-night television infomercial.  It was scripted chit-chat.

It was not informative.  It was patronizing.  When the "moderator" asked what percentage of people with ALS were in the Registry, we didn't hear an answer. We heard that the largest percentage was from the government files. The "moderator" wasn't exactly Mike Wallace with followups.  When the "moderator" mentioned the ALSA contract, the CDC representative talked of spikes in enrollment but gave us no numbers.  I'm not sure what kind of measure a "spike" is -- a dozen, a gross, a spike?

And we watched as they kept chit-chatting to the bitter end of the time period. Three suits on a stage.

There was no Q and A period.  None.  Questions were to be taken up at the later individual opportunities to meet the scientists 1:1.  That certainly stifled any public discourse and wasn't helpful for those of us who had appointments on Monday.

After the session, a man with ALS said to me, "That wasn't patient-centric."

Bingo.

1 comment:

  1. Horribly frustrating. If I could scream I would but I have ALS.

    ReplyDelete