OFFICIALS LEGISLATION INTEREST GROUPS PUBLIC STATEMENTS COMMITTEES VETOES

ALS Registry Act

Floor Speech

Date: Oct. 15, 2007
Location: Washington, DC
Issues: Health and Health Care


ALS REGISTRY ACT -- (House of Representatives - October 15, 2007)

Ms. BALDWIN. Madam Speaker, I move to suspend the rules and pass the bill (H.R. 2295) to amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry, as amended.

BREAK IN TRANSCRIPT

Ms. BALDWIN. Madam Speaker, I yield myself such time as I might consume.

Madam Speaker, I rise in support of H.R. 2295 the ALS Registry Act. Amyotrophic lateral sclerosis, or ALS, more commonly known as Lou Gehrig's disease, is a fatal, progressive neuro-Ðdegenerative disease affecting approximately 5,600 Americans each year. It is estimated that as many as 30,000 Americans have ALS at any given time with an average life expectancy of 2 to 5 years from the time of diagnosis. Today, no single national patient registry collects and stores information on the prevalence and incidence of ALS.

The ALS Registry Act would create a nationwide registry at the Centers for Disease Control and Prevention for ALS and other related motor neuron disorders. The patient registry would collect data which is urgently needed for ALS research, disease management, and the development of standards of care. This will allow us to make real progress toward better understanding ALS, and to develop measures for prevention, treatment and cure of this dreaded disease.

Madam Speaker, I would like to thank my friend and colleague, Representative Eliot Engel, for his dedication to bringing this bill before us today. Madam Speaker, I strongly urge my colleagues to support H.R. 2295.

I reserve the balance of my time.

BREAK IN TRANSCRIPT

Ms. BALDWIN. Madam Speaker, in closing, I strongly support this bill. As we have heard, this bill would collect data which is urgently needed for ALS research and will go a long way toward moving us closer to treatments and a cure for this devastating illness.

Again, I wish to recognize my colleague (Mr. Engel) and other colleagues who have spoken today who put a personal face and a personal story behind this important legislation.

Madam Speaker, I urge my colleagues to support this bill.

BREAK IN TRANSCRIPT


Source
arrow_upward