ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis

Wednesday, July 31, 2013

Dear People Invited To The CDC ATSDR ALS Registry Surveillance Annual Meeting Today

If the veil of secrecy is required, please explain that requirement to us.

If the veil of secrecy is desired, please explain that to us, too.

Such secrecy is not healthy for good project governance and is clearly not in HHS's spirit of patient-centricity.

Thank you.

Monday, July 29, 2013

Howdy, Partners

We think that the supporters of the CDC's ATSDR National Registry and our major ALS organizations deserve some candid and clear information about who has been paid to do what from the government funds that we fought hard to have approved.

From ALSA's 2012 Annual Report, the most recent on its website, under the heading of "Fighting for the Interests of the ALS Community," there was mention of a "partnership" with the CDC to help raise awareness of the National ALS Registry.  There was absolutely no mention of any kind of contractual or vendor relationship or compensation related to the $6 million which we taxpayer/advocates requested of all taxpayers for the Registry.

Then we stumbled across this cool million (quite by accident) a few weeks ago at

And what in the world is this about?

We understand that the ALS Registry powers that be are meeting in Atlanta this week.  We hope that they'll shine some sunshine on their proceedings and processes and "partnerships."

Wednesday, July 24, 2013

We Should Have A Large, Angry Crowd By Now

Around 10 million people have died from ALS/MND since Lou Gehrig's diagnosis in 1939.

That's like the entire population of Belgium or Sweden.

That's an outrageous loss of life.

Who can lead the many more loved ones of these 10 million people into a cohesive movement?  The base grows, yet the engaged base doesn't.

Porquoi? Varfor?

Saturday, July 6, 2013

We Have Three Very SImple Questions Regarding The CDC's ATSDR National ALS Registry

What percentage of the total patients in the Registry have been identified...

Q1: Both by your passive data mining and by self-enrollment?

Q2: By passive data mining only and not by self-enrollment?

Q3: By self-enrollment only and not by passive data mining?

How else are we to know the effectiveness of the self-enrollment efforts?  Whoops, I guess that's a fourth question (but only if we can't get answers to Q1, Q2, and Q3).

And if we can't get the answers because of some OMB policy, then yet another question is whether the OMB gag order is OMB's alone or whether there was an agreement presented to OMB by the CDC which prevented this disclosure.

Yes, it turned out to be five questions, but there are only three if we get the simple (and important) responses to Q1, Q2, and Q3.

Thursday, July 4, 2013

The Greatest Day Ever For ALS Awareness Was July 4, 2009

Through the work of one wise and driven man with ALS, every major network and every major publication carried an ALS feature.

This website gets a pretty steady amount of traffic.  On that July 4 weekend four years ago the traffic was astronomical.  It came from thousands of people searching for words related to ALS.  Never before, never since has there been anything like it.

"4 ALS" wasn't about fundraising.  It wasn't about an organization.  It was about ALS awareness and it worked.

Michael Goldsmith, we miss you.

Monday, July 1, 2013

If You Could Propose One Idea To Improve Healthcare Delivery...

@phrma asked us on twitter, " If you could propose one idea to help improve health care delivery in the United States, what would it be? - See more at: "

If anyone knows where the rough spots are in healthcare delivery, its a person with ALS or a caregiver.
This idea is simple. It's incredibly simple. It's low-tech.  Its need reflects a healthcare delivery system that still doesn't get patient-centricity though.

Dear people in the entire healthcare delivery process, I, the patient or caregiver, am a valuable resource for fixing a few things that aren't hard to fix.  Please listen to me.  Really listen.

After waiting for an appointment under the racket of a waiting-room television, I mentioned to the receptionist that it would be nice if there were a quiet area for patients who choose to read or work.  Even my car dealer does that these days so that I can be productive while I wait.  Did that suggestion make it to a staff meeting or a process-improvement team at the doctor's office?  Probably not.  I think a lot of those patient comments are ignored by the front-line folks because the patient can always mention them on the customer satisfaction survey.  Besides, is the receptionist expected to be a waiting-room change-agent?

When I said to the physician, "Gee, the walls are thin in these exam rooms," that was a big clue that I heard things that were none of my business.  What happened to that comment?  Probably nothing.  Yet we spend gazillions on HIPAA forms.

When I as a caregiver mentioned to the doctor that it took me two trips to the BMV to get the handicapped hang tag and if the doctor's office simply kept those forms, it would only have taken one, did anything happen to save the next caregiver a trip?

Healthcare delivery stakeholders, your patients are a gold mine.  Are front-line healthcare deliverers motivated to be part of solutions?  Between it's-not-my-job syndrome and leaving the voice of the customer to the customer satisfaction surveys, we miss the gold mine.  Are patients who make observations and suggestions valued or are they wasting your valuable time?  It's up to you, healthcare delivery.