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.

Sunday, May 10, 2015

Before We Ask For Another $10,000,000.00 For The ALS Registry - Question 2

Which is it, $1.1 million or $10 million?



In the 2013 OMB filing for this project, we see the following:
http://www.reginfo.gov/public/do/DownloadDocument?documentID=396524&version=0
(And a hat tip to the ALS advocate who sent that document to me yesterday.)

14.  Annualized Cost to the Government
Data analysis by ATSDR may result in action taken by the Division of Toxicology and Human Health Studies in response to the required CDC mandate in maintaining preventive health activities and surveillance systems.  The action taken will vary, depending on the analysis.
 The total cost to the federal government for the collection of this information for the three year ongoing project is $3,300,000 as itemized below. Annual ATSDR personnel costs $420,000 Additional expenses will be incurred by ATSDR in order to operate a successful surveillance program/registry.  Four staff will contribute to this program: a Senior Scientist (25% contribution=$75,000), and a program analyst (100% contribution = $100,000)  A contractor will be used to maintain the web portal for case registration and participation in surveys in addition to providing public user support 40 hours per week ($500,000).  Lesser expenses may include computer resources, telephone calls, and recruitment materials (approximately $5,000).
 The estimated annual cost to the government is $1,100,000.

So we're confused.  We ask for another $10 million every year.  Why?

The ALS Registry budgeting process has always been a bit of a mystery.  Last year we learned at the ALSA Advocacy Conference that the original $10 million number was a number that the legislative sponsor thought could be raised. It was not built up from a businesslike budget.  We also got our first glimpse into annual expenditures with some very broad percentage breakouts at that conference --



It would be respectful of those with ALS and caregivers who are going to legislators to ask for another $10 million to know more clearly how that much money would be spent by project component.:

And yes, it continues to be a concern that the advocacy organization that sets the public policy priority that champions $10 million for the Registry has itself been a large, paid contractor on the project.

Why are we asking for $10 million for a $1.1 million project?  More does not mean better.

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