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, April 19, 2016

Do Not Be Misled by the Everybody-Does-It Defense

In case you've been asking questions about the sweet government contract that the ALS Association signed for "education and outreach" for the CDC's ALS Registry, you may have heard an excuse that lots of not-for-profits have government contracts.  That's true.  And many of them are a blessing for taxpayers and the citizens they serve.  They compete to do things economically and deliver better than a government agency can.

The government contract that ALSA was handed by the CDC is a far different beast.



1. It was a no-bid contract.  There was no competition.  It was a single-source proposition.  Nobody in government purchasing seemed to catch the fact that later they handed a similar no-bid, single source contract to the MDA.  How many single sources can one task have?

2. The ALS Association has been the advocating organization for the CDC to do the ALS Registry.  They tell us how exactly how much to request every year.  We advocates go to ALSA's conference and are handed the list of precisely what to request of legislators, including an unsubstantiated amount for the CDC for the Registry.  I repeat, they tell us exactly how much to request.

3. Transparency demands that a charity be crystal clear with advocates and donors when it enters a contractual relationship with a government agency and has a financial interest in a project that we are told to support on Capitol Hill.  That didn't happen. It took a Freedom of Information Act request and two years to find out exactly what ALSA was supposed to be doing and what their contractual work standards were.  When it's that difficult, the parties obviously don't want to talk about it.

4. And then there's the contract clause prohibiting the contractor from lobbying for the project using contracted funds.  There is no doubt that ALSA has managed to fulfill the letter of the law, but have they not defied the spirit of it in the way they send us (sincere, unquestioning advocates) to Capitol Hill with a huge number for the CDC's Registry?

With two signatures on a contract, the ability to provide responsible advocacy and oversight on a big government project was compromised.

Please do not be misled by the "everybody does it" defense.  Everybody does not do it.  And if anybody else does, that does not make it right.

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