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.

Friday, September 19, 2008

Deju Vu - Let's Have A Different Ending This Time

Over 800 Americans with ALS have died since that July 28 Senate vote not to proceed with voting on S. 3297, the package of bills that contains the ALS Registry Act (and other bipartisan legislation that is important to ordinary Americans).

There are also over 800 newly diagnosed people with ALS facing a big, nasty ALS trip with their families.

If the same vote comes up next week (and we hope it does), we need 60 Senators to vote to move ahead with S. 3297. We need 60. We hear that the Democrats rule the Senate, but there are only 49 of them. There are 49 Republicans. There are 2 independents. We need some of each. We need for the Democrats who were with us on July 28 to stay with us. We need the Republicans who were with us on July 28 to stay with us and to bring some of their friends along.

Please email your Senators even if you have every confidence that they will be with us again. We need for them to show up to vote for S. 3297 and to convince their peers to do likewise.


  1. My calculations on the back of my envelop say that should the ALS registry not be enacted this session, then by the time it come up again, 5,600 of us ALS patients will have died, and our deaths will not be entered into any registry. What a dreadful waste, don't you think?

    Is it true that Senator Tom Coburn is a medical doctor who is blocking this important health registry?

  2. Actually, I think it's worse than your envelope describes.

    The next (111th) Congress will last for two years (matching the two-year terms of House members). If they do as they have in the past, they'll save legislation like the ALS Registry Act for the end of that two-year cycle (that is provided we can get all of the committee work and co-sponsors lined up again).

    My personal opinion is that your 5600 number is probably low (a registry would help, wouldn't it?). In any case, if we start from scratch in January and take another two years, that's around 12,000 lives lost along with the clues they carry. That's waste caused by government, isn't it? That number includes some people who don't even know what ALS is today.

    Coburn has a medical degree and is licensed to practice medicine in Oklahoma. He is a family practice/primary care physician who seems to like handle obstetric procedures when he is in his district. I cannot find evidence that he has board certification in obstetrics. He is not a neurologist. He is not an epidemiologist. He did take the Hippocratic oath.