S. 1382 would amend the Public Health Service Act to provide the establishment of an Amyotrophic Lateral Sclerosis Registry.
Detailed Summary
ALS Registry Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) develop a system to collect data on amyotrophic lateral sclerosis (ALS) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, or progress to ALS; and (2) establish a national registry for the collection and storage of such data.
Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to review information and make recommendations to the Secretary concerning: (1) the development and maintenance of the registry; (2) the type of information to be included; (3) the manner in which data is to be collected; (4) the use and availability of such data; and (5) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS.
Allows the Secretary, acting through the Director, to award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS and other motor neuron disorders.
Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for research access to ALS data as recommended by the Advisory Committee in a manner that protects personal privacy.
Requires the Secretary to ensure that epidemiological and other types of information is made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs.
Status of the Legislation
Latest Major Action: 5/14/2007: Referred to Senate committee. Status: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Points in Favor
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Points Against
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Visitor Comments
Leon Peek
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
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
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
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.