Reid Reintroduces Legislation to Create ALS Registry

Press Release

Reid Reintroduces Legislation to Create ALS Registry

Working to increase understanding of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, U.S. Senator Harry Reid of Nevada reintroduced legislation today to establish a single, national ALS patient registry at the Centers for Disease Control (CDC) to collect data and study ALS.

"Creating a national registry is crucial to understand patterns and examine causes of this debilitating disease," said Reid. "It means so much to me to sponsor such an important piece of legislation, which offers hope to ultimately find treatments and a cure for ALS." The Amyotrophic Lateral Sclerosis (ALS) Registry Act authorizes $25 million for fiscal year 2008 and such sums as necessary for fiscal years 2009 through 2012. In the two years since Reid first introduced this bill, Reid and Senator Harkin have secured funding ($900,000 in FY 2006 and $900,000 in FY 2007) so that the CDC may begin pilot programs that will aid in the development of a national ALS registry. These pilots will help expedite the creation of the registry should the legislation become law.

Reid delivered the following speech on the ALS Registry Act.

Mr. REID. 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 27th, 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 US 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 fifteen thousand patients to as many as thirty thousand.

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 US; 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 ALS.

A national registry will help arm our nation's researchers and clinicians with the tools and information they need to make progress in the fight against ALS. The data made available by a registry will potentially allow scientists to identify causes of the disease, and maybe even lead to the discovery of new treatment, a cure for ALS, or even a way to prevent the disease in the first place.

Mr. President, I first introduced this legislation in 2005. Since that time, we have appropriated funding to begin work on the development of a National ALS Registry at the CDC. As a result, the CDC has begun pilot programs that will: (1) develop and test strategies to efficiently identify ALS patients, and (2) determine how to obtain data from existing registries and databases. These pilot programs will help to expedite the development of the registry established by this legislation. This is especially important considering the life expectancy for a person with ALS is two to five years from the time of diagnosis.

The establishment of a registry will bring new hope to tens of thousands of patients and their families that ALS will no longer be a death sentence. No one wants to wait another 136 years before a cure is found. I urge my colleagues to support the swift passage of the ALS Registry Act.

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