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, November 21, 2017

We Can Multitask. We Must!

You never know when a new, hot-button ALS advocacy issue will pop up.  ALS policy issues don't happen in an orderly set of three things that can be addressed every May.

Things can happen quickly, especially the bad things, and we need to jump on them and speak up to our legislators.

For the last three months, the Orphan Drug Tax Credit has been on the chopping block as part of the tax-reform proposals.  If you're not familiar with the Orphan Drug Tax Credit, Google is your friend.  It has been effective in stimulating development for low-prevalence diseases like ALS and dozens of others.  It's an odd tax credit to eliminate since the research is valuable and the orphan diseases are expensive in many ways.  There have been tax-credit abuses, but you don't throw the baby out with the bathwater.  We all need to make sure our legislators know that this tax credit must not be eliminated in the name of tax reform.

We need to jump on this.  We need to email our legislators now.  This is urgent.

Other things pop up constantly -- inconsistencies in Medicare coverage, loss of Medicaid, changes in technology access, drug approval processes, SSDI rules, CDC Registry dysfunction, etc. -- that we need to speak out about.  Our elected officials and government employees need to know our concerns and expectations.

Where are our calls to action?  It's frustrating (and wasteful) when our large advocacy organizations are slow to mobilize their large bases of advocates on issues of immense and urgent importance.  If only their passion for SoMe fundraising also applied to public policy issues.

ALS develops the world's greatest multitaskers.  Once you've been a hands-on ALS caregiver, you can juggle and complete dozens of tasks simultaneously.  You must.  We advocates can multitask.  We can handle more than a neat list of three priorities in May.

A concerned, capable base of advocates that wants to be effective and engaged is a terrible thing to waste.

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