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.

Wednesday, August 8, 2018

The Problem With "Partners"


Government Project Manager to Contractor:  "You're not getting the job done.  We're paying you $400,000 a year and we're not getting results.  Take corrective action today and report measurable improvement by the end of the quarter if you want to continue as our contractor."

These words are never uttered when the Contractor is also the chief lobbying organization that gets generous funding every year for the project.

And nobody sees a problem here?

Wednesday, August 1, 2018

It Lays Eggs, Folks!

Large, golden eggs.

Over a decade after we helped pass the ALS Registry Act,  the deliverables from the project have been poor.

It undercounts prevalence.
It makes generalizations that may contribute to implicit bias.
It can't even do incidence.
It has been obscenely expensive.

Yet we hear how great it is.

At the ALS MND International Symposium last December, the CDC Registry people presented a study they did in a general session (a big scientific stage).  It measured distances of people with ALS to clinics.  Certainly an interesting concept, but the ALS patient population they used was part of a Registry that pays clinic sponsors well to promote the Registry.  Might they not already tend to be nearer clinics than the people the Registry missed?  Might there be a basic data problem here?  They presented. Applause was polite.  Then a noted ALS scientist in the audience got the microphone and said, "Very nice work!"  I was floored.  He's smarter than that.  Very nice work?  Later I looked and, behold, he received grant funds from the generous CDC Registry budget.  Nice work, sure.  So much for peer review.

Next week (August 7-8) the annual CDC Registry meeting is scheduled.  It is an invitation-only affair in Atlanta with the CDC and project contractors hand picking the invitees.  We don't even have information on how to watch a webstream this year.

I predict that the paid facilitator will make sure that everybody there knows the procedure for expense reimbursement and will make sure people know not to beat a dead horse and keep the agenda moving.

Patient representatives will wisely suggest at some point in the meeting that specific measures and goals be set for increased Registry self-enrollment, and the facilitator will never make sure we come back to that concept.

Nobody will address the significant problems in this Registry bluntly.

Nobody will demand to know how in the world it manages to burn through $10,000,000 per year.

Nobody will talk about how misleading the data published from the Registry can be.

Nobody will be honest about the value or lack thereof of the project.

They'll all go home and feel good.

They repeat the ritual year after year.

Why?

The project lays eggs.

Some of those eggs are golden no-bid contracts.  Some are golden research grants.

Nobody at that meeting will kill that goose.  Nobody will give it the scrutiny it needs.