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P.L. 110-373, The ALS Registry Act (9 comments ↓)
- This item is from the 110th Congress (2007-2008) and is no longer current. Comments, voting, and wiki editing have been disabled, and the cost/savings estimate has been frozen.
S. 1382 would amend the Public Health Service Act to provide the establishment of an Amyotrophic Lateral Sclerosis Registry.
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There was no up-or-down vote in the Senate.
Visitor Comments 
Leon Peek
January 14, 2008, 11:25am (report abuse)ALS, commonly known as Lou Gehrig's disease, is the most horrible disease in our modern times. ALS is the disease that takes a deadly toll on the body by a process of total muscle paralysis, which causes death in a very short time. While the amount of those being diagnosed is on the rise our numbers remain just low enough for science and the medical companies to turn and look away. ALS is the disease we like to whisper about.
Before adjourning for the year, Coburn vowed to put a hold on any bill that didn't meet a set of criteria that he outlined on his website. Apparently, this is one of the bills that didn't make the cut, but Coburn has not yet issued a specific explanation as to why. He's got a lot of explaining to do with this one -- it is co-sponsored by two-thirds of the Senate and the House of Representatives already passed their version of it by an overwhelming vote of 411-3.
Chuck Hummer
January 14, 2008, 1:11pm (report abuse)If Senator Coburn is a man of principle, then it would be productive for those of with ALS for whom this legislation is critical, can lead us to a solution. Finding workable solutions such as the legislation which has been four years in the making is not easy. If he doesn't like that solution, than be a part of the solution and tell us what does meet your criteria.
RC
January 24, 2008, 8:12am (report abuse)I cannot imagine how a physician can put a hold on legislation that could lend some clues to a quickly fatal disease of unknown cause.
Perhaps his clinical experience did not include seeing ALS. It would be helpful if he met some people with ALS in person to see the victims of his legislative barrier.
Chuck Hummer
May 10, 2008, 1:29pm (report abuse)It is hard to conceive of a situation where there is overwhelming bipartisan support for legislation that a single Senator can essentially shut it down. As one of those with ALS for whom this legislation can make a major difference in finally establishing a credible database on which to direct scarce research funds. I find this continuing roadblock criminal.
Next week over 500 of my fellow ALS patients will be in Washington DC for the annual ALS Association Advocacy Day and Public Policy Conference. It is my fervent hope that enough of my fellow patients will visit the good Senator's office so he can answer for his obstructionist actions face to face with those dying from this terrible disease.
I thought by now that any man of good faith, trained in the healing arts, and representing his state in the Senate could have found a solution to those issues on which he bases his objection and hold. Apparently I was wrong on all counts.
Dave Candage
July 28, 2008, 7:04pm (report abuse)The main problem with this bill and most others that go through the legislature is that the constitution does not provide for this type of spending. It's not government's job to provide remedies or cures or treatments for any disease or condition or behavior. The best thing government can do is get out of the way and let private concerns do what they do best - get things done faster and more efficient than any government agency.
Leon Peek
August 9, 2008, 11:40am (report abuse)Great point Dave, to believe your theory the US would still be fighting malaria, you need to get out of the way.
Bob Schmehl
September 19, 2008, 5:11pm (report abuse)Dear Dave
It's easy for you to say.
You don't have ALS. Thank God
Lon S. Cohen
September 23, 2008, 12:53pm (report abuse)Victory! Senate Passes the ALS Registry Act. http://tinyurl.com/3mjpjh
Katie
September 24, 2008, 2:56pm (report abuse)Dave talk to somebody with it or that knows somebody with it and then rethink. its a terrible life to like
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