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, April 1, 2016

Whoa! Enough of the $10,000,000 Annual Autopay.

Enough!  We need our charge card back.

Many of us ALS advocates have worked hard for a number of years to get a national ALS Registry. The goal was to have complete and orderly data for a better scientific understanding of ALS.  Every year the ALS Association hands us a funding number that we are told to request to enable the CDC's ALS Registry to meet that goal.

For a decade this project has been on autopay.  We need to stop.  We need to look at the bills we've paid and the value of goods and services we've received.  We need to take back our taxpayer charge card and see a detailed budget and decide what should happen next.


We should not be asked to raise $10,000,000 without having a detailed budget accounting on how it will be spent.

Contractors on the project, including the ALS Association, should be crystal clear about their pieces of the budget and their work products.  Advocates should not have to file Freedom of Information Act requests and wait two years to see their contracts as we were forced to do!

And how is ALSA,  the contractor that tells us advocates how much to request for the project,  living up to the spirit of its contractual and ethical obligation not to lobby for appropriations for its project?

The secrecy of the budget and various financial interests in the project are troubling.  The annual  cycles contribute to the lack of transparency.

When the hundreds of advocates trek to Capitol Hill each May for funding, many of them are employees of the ALS Association, trustees of the ALS Association, and advocates whose travel has been subsidized by the ALS Association.  The deck is stacked to avoid questions and candid discussion on the cost and value of the registry.


After all of these tens of millions of dollars have been invested already, we have received exactly one annual report from this project.  It was in 2014 -- .  Sure there was a time-lag in the ability to report data because of the passive data mining techniques being used on old government files, but the quality of the report itself was a concern.  Here is the best evaluation of that report that I've seen --  There are serious completeness concerns.

And the second "annual" registry report on ALS did not arrive in 2015 and has still not arrived in 2016.  We taxpayers paid the autopay but the reports are not arriving as promised.

The project has been plagued with scope creep, perhaps a result of a budget that is more than is needed to deliver its core mission.  We get tweets about the wonderful resource locator at   Take a look in the lower left corner of that busy page.  Why are we taxpayers paying to maintain a directory of clinics and chapters when we could just have two simple links to those organizations' own directories?  And if you feel brave, give that registry resource locator a try. Did it work for you?  It hasn't worked for us for months.

Another of the products of the scope creep has been the clinical research notification tool.  It is the "success" story that has been used in recent years to deflect the lack of deliverables in the registry's core mission.  We hear that 70,000 emails have been sent.  Nobody has ever told us how many unique people have been notified and how many of those people actually enrolled in clinical research as a result of those emails.  Impact?  Is the registry leading people with ALS to be passive rather than active in their searches for clinical research opportunities?   These registry studies represent a tiny fraction of currently enrolling ALS trials, and these notifications are almost all for observational studies.  One is actually notifying people of another government-funded registry.   This kind of notification is not patient-centric. We have an expensive way to crank out emails that has been spun into a "success" story.


Last year a large meeting was convened by the ALS Association to get a broad spectrum of ALS organizations to "collaborate."  There were just two agenda items.  One was to agree on the number of people in the United States with ALS.  Was it collaboration or collusion?  In either case, they couldn't reach a decision.  More study was needed.  Over $60 million invested in a registry and more study is needed?

Any modicum of oversight on the registry project would seem to come from its own annual meeting group. The following is from the ALS Registry Act:

The people with ALS, family members, and other individuals are hand-picked by the ALS Association and the MDA (both paid government contractors on the project).  Those two government contractors are the only ones allowed to nominate anyone to participate per the current CDC policy.

If that annual meeting had every attendee self-identify as a government employee, a paid government contractor on the project, or the handpicked nominee of one of the contractors, there would be nobody else left in the room.

Who in that room asks some simple questions like how many unique people with ALS were seen at contractors' ALS clinics in the past year, and of those, how many are self-enrolled in the registry?  Who in that room asks simple questions like how many new people with ALS were brought into the contractors'  clinic system in the past year, and how many of them had self-enrolled in the registry?  And who in that room would come prepared to answer such simple questions?

And do they ever talk about budgets and actual spending and the project's delivered value at that oversight meeting?

HHS Secretary Burwell and we taxpayers are not well served by the cozy quality of participant selection for this oversight group. It is anything but open. It is anything but businesslike.   It is anything but collaborative.


How did they come up with the $10,000,000 annual figure?  How is that large budget built, please?  When we asked a few years ago, the response was that $10 million was the most the legislative leaders thought they could raise for the registry.  That's no way to fund a project!  That's precisely the way to fund a government boondoggle.

A project's budget needs to be built from the need for resources to produce defined deliverables.  To build a project around a huge budget number is backwards.  It explains the scope creep.  It explains the lack of accountability.  It is anything but good stewardship of taxpayer funds.  It is anything but good stewardship of scarce resources in the fight against ALS.

So here we go again.  Legislators were approached about another $10 million by those who participated in ALSA's invitation-only March fly-in.  Hundreds of us will be sent to Capitol Hill and will be told to reinforce that request on May 10.  ALSA and the CDC will get another $10,000,000 or close to it.  The CDC says that the second "annual" report that is almost a year late is in final review.  I seriously doubt that we see it before May 10.  Then there will be another cozy oversight meeting later in the summer.  We won't get minutes from that meeting until close to the time when we will be told how much to request for another year.  It's a cycle that keeps people with vested financial interest in the project in control of messaging.  It's a cycle that keeps a bloated request for funds de-coupled from accountability for project results.

It's time to take this project off of autopay.  We've become enablers.  Enough!  We need our charge card back.  

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