Introductory Statement on S. 1382
Mr. President, I rise to introduce the ALS Registry Act. Lou Gehrig brought Amyotrophic Lateral Sclerosis, ALS, to the public's attention more than 65 years ago and his courage put a human face' on this terrible disease. Each of us has a…
Mr. President, I rise to introduce the ALS Registry Act.
Lou Gehrig brought Amyotrophic Lateral Sclerosis, ALS, to the public's attention more than 65 years ago and his courage put a human face' on this terrible disease. Each of us has a Lou Gehrig back in our home State, someone who shows great tremendous courage and grace as they wrestle with ALS.
Over the years, I have worked closely with the Nevada ALS Association and have met with many Nevadans who have been touched by this devastating illness. One of these Nevadans was a man by the name of Steve Rigazio who was invited to testify before the Labor/HHS/Education Appropriations Subcommittee in May of 2000. Steve was at the height of his career when he was diagnosed with ALS. He worked through the ranks of the Nevada Power Company, the largest utility company in the State, for 16 years until he became president. He played semi-professional baseball. He also played and coached recreational hockey.
After his diagnosis, Steve continued to show up for work at 6 a.m. for as long as he could. Sadly just 20 months after he testified so movingly before Congress, Steve Rigazio died of ALS on December 27, 2001 at the age of 47. He left behind a family that included a wife, two children and hundreds of friends. The ALS Steve Rigazio Voice of Courage Award was named in his honor as a living testimony to the life of this special man.
Every year approximately 5,600 Americans will learn they have ALS. There is no cure for ALS and there is only one FDA approved drug to specifically treat ALS. That drug only works for 20 percent of patients, and even for them, it merely extends life for a few months.
ALS has proven particularly hard for scientists and doctors to tackle for a number of reasons. One of those reasons is there is not a centralized place where data on the disease is collected. Currently, there is only a patchwork of data about ALS that does not include the entire U.S. population and only includes limited data for specific purposes, such as to determine the relationship between military service and the disease. Perhaps the most obvious example of the limitations of current surveillance systems and registries is that we do not know with certainty how many people are living with ALS in the United States today. Over 136 years after the discovery of ALS, estimates on its prevalence still vary by as much as 100 percent, from a low of about 15,000 patients to as many as thirty 30,000.
The legislation I am introducing today would create an ALS registry at the Centers for Disease Control and Prevention, CDC, and will aid in the search for a cure to this devastating disease. The registry will collect data concerning: the incidence and prevalence of ALS in the U.S.; the environmental and occupational factors that may contribute to the disease; the age, race or ethnicity, gender and family history of individuals diagnosed; and other information essential to the study of