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.

Tuesday, September 14, 2021

Dear Chair DeLauro and Ranking Member Granger


Dear Chair DeLauro and Ranking Member Granger,  

I write you as a concerned advocate for those with ALS (we lost Mom to ALS in 1997), a person who believes in the value of epidemiological data in science, and a taxpayer.

ATSDR has administered a CDC ALS Registry since we worked hard to have the ALS Registry Act  passed into law in 2008. It has disappointed in many respects -- undercounting cases yet publishing reports as if counts were complete, terribly late reporting of data (we just saw 2016 data for the first time), falling into the distracting temptations of scope creep, and entangling itself in financial relationships that prevent objective and candid oversight.

You wisely inserted language into the recent appropriations bill --

https://docs.house.gov/meetings/AP/AP00/20210715/113908/HMKP-117-AP00-20210715-SD003.pdf

Amyotrophic Lateral Sclerosis Registry.—The Committee directs CDC to present a plan to the Committee within 90 days of enactment of this Act to enhance the oversight and advisory process for the National ALS Registry to increase transparency and better reflect the needs of the ALS community. This plan should consider ways to translate Registry findings to human application that can lower the risks and disease burden of ALS, make disease reporting more representative, more accurate, and more inclusive, and include a range of estimates rather than point estimates of ALS prevalence. Equally important are updates to the survey process to ensure the data they collect are impactful and respectful of participant burden. Finally, the plan should ensure that the ALS community can view as much Registry information as possible without compromising the privacy of participants.

Two weeks ago the CDC ATSDR Registry folks held an annual meeting. It has never been a true oversight meeting.  Two weeks ago it was more of a closed, clubby celebration of questionable achievements (from what little I was able to see).  The public could only watch part of the first day.  It takes an invitation to be a full, two-day participant with the ability to unmute and ask questions and make comments.  We're not sure what it takes to get an invitation. A man with ALS, Stephen Finger, PhD, who has participated for several years and asks good questions was not invited back this year.  He seems to have outlived his welcome.  Good for him, but his exclusion was revealing.  

ATSDR refers to its many "partners" at the meeting.  Those are largely paid contractors, including the ALS Association (ALSA), the Muscular Dystrophy Association, and Les Turner ALS Foundation who together get around $1,000,000 per year in no-bid contracts for some vague "education and outreach."  ALSA is also the lead advocacy organization that lobbies you for the $10,000,000 annual budget for the project.

Add to that a number of grant recipients and potential grant recipients at the meeting, and we have a pretty good recipe for a love-fest rather than any kind of objective oversight.

Please insist that they bring to you an oversight plan that is composed of third parties with knowledge of epidemiology and payer data and information systems who have no financial ties to this project.

Thank you very much.