It has been 248 days since the ALS Registry Act passed the US House of Representatives by a 411-3 margin. However, unlike the unicameral Nebraska legislature, Congress has two bodies that must approve a bill before the president can sign it into law. Republican Senator Tom Coburn of Oklahoma has done everything that he can to prevent the legislation from passing. About 200 days ago, he placed a hold, a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate.
One of The bills held hostage is the ALS Registry Act S.1382. This legislation would authorize the establishment of an ALS Registry at the Centers for Disease Control and Prevention on the bill. Time is running out on this congressional session, but there might be something in the works that will save this legislation which is critically important to people affected by ALS.
Last week, Senate majority leader Harry Reid announcedthat he is working on a "Coburn Omnibus" bill that would group together some of the roughly 100 bills that Coburn placed a hold on into one big bill. He hinted that the omnibus bill would be ready by the end of the month.
Coburn might not actually oppose the legislation. He's just trying to make a point about government spending and be a true small government conservative by obstructing good legislation. But he might have bet on the wrong horse this time. Reid is carefully selecting bills that have widespread support for the omnibus. According to his staff, some Republicans have already asked about having some of their bills included.
Reid, one of the original co-sponsors of the ALS Registry Act, has not announced which bills will be considered. But with over 75 co-sponsors, I hope that the ALS Registry Act would be included.
ALS, also known as Lou Gehrig’s Disease, is a neurodegenerative disease with no known cause or cure. It afflicts people of all ages and is completely nondiscriminatory of color, race or gender. The nerves that operate the voluntary muscles begin to sicken and die, the muscles begin to atrophy, leaving the patient paralyzed, speechless, unable to swallow and eventually breathless.
The establishment of a national registry will help identify the incidence and prevalence of ALS in the United States and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.
I contacted the ALS Association to see if they had heard anything regarding the omnibus. Unfortunately, I have not heard back.
Sure, it would be nice if the ALS Registry Act was passed on its own. But time is running out. This might be the last best chance to get this vital piece of legislation passed. And getting the Act, supported by both parties, passed is all that matters to me and the 30,000 other Americans who are watching our bodies slowly waste away.
Tell Senator Reid to include the ALS Registry Act in the Coburn Omnibus
Tell your own Senators to pass the ALS Registry Act
Look at what ALS has done to my body