VA To Provide Full Benefits for All Veterans With ALS

The Department of Veterans Affairs on Tuesday announced that all veterans with amyotrophic lateral sclerosis, or Lou Gehrig's disease, will receive full disability, lifetime health and death benefits, a move that effectively acknowledges a general link between the condition and military service, the New York Times reports. According to VA, all veterans with ALS will qualify for disability benefits, regardless of when or where they served.

VA expects 416 new cases of ALS among veterans in 2009 and a total of about 700 veterans who qualify for the benefits annually. Disability and death benefits will cost about $23 million in 2009 and $505,839,000 over 10 years, according to Tom Pamperin, deputy director of the compensation and pension service at VA. VA based the decision to provide the benefits on studies that found veterans are more likely than the general population to develop ALS, although the reason for the link remains undetermined.

Pamperin said that VA Secretary James Peake "felt the right thing to do was to give veterans the benefit of the doubt, particularly since this disease is so debilitating." Jinsy Andrews, a neurologist at the center for ALS at New York-Presbyterian Hospital, said, "There are many theories of why veterans may be having an increased risk of ALS, which include psychological or physical stress, or even vaccinations or exposure to electromagnetic fields, or to toxic agents that have been used in the Gulf War," adding, "And that may lead [us to] discover possible associations and mechanisms involved in the disease that have been unknown for so long" (Grady, New York Times, 9/24).

Senator Reid Reintroduces Legislation to Create ALS Registry

May 14, 2007 -- Washington, D.C. - 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.

The ALS Registry Act

A single national patient registry which collects and stores information on the prevalence and incidence of ALS does not exist in the United States today. The establishment of a national registry will help identify the incidence and prevalence of ALS in the United States and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.

The ALS Registry Act would:

• Provide for the creation and maintenance of a single nationwide ALS Registry at the Centers for disease Control and Prevention (CDC). The registry would collect data concerning: the incidence and prevalence of ALS in the US; the environmental and occupational factors that may be associated with the disease; the age, race or ethnicity, gender and family history of individuals diagnosed with the disease; and other information essential to the study of ALS as determined by a newly created federal Advisory Committee on the National ALS Registry.

• Provide a secure method to put patients in contact with scientists conducting clinical trials related to ALS and scientists studying the environmental and genetic causes of ALS.

• Authorize $25 million for FY 2006 and such sums as necessary for fiscal years 2007 through 2010.
  

Please contact your Senators today to urge them to co-sponsor the ALS Registry Act. Here is a sample letter for U.S. Senators that you can copy.

INSERT Date

The Honorable (INSERT Senator’s Full Name)
United States Senate
Washington, DC 20510

Dear Senator (INSERT Senator’s Last Name):

I am writing to ask that you support and cosponsor S. 1353: the ALS Registry Act of 2005, important legislation introduced in the Senate by Senator Harry Reid (D-NV). The legislation is a vital step in the nationwide effort to find a treatment and cure for ALS, better known as Lou Gehrig’s disease.

Amyotrophic Lateral Sclerosis (ALS) is a progressive, fatal neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord, ultimately resulting in a loss of voluntary muscle control, paralysis and death. The average life expectancy for people with ALS is two to five years from the time of diagnosis. But what makes ALS particularly devastating is that as people progressively lose the ability to walk, move their arms, talk and even breathe, their minds remain sharp; aware of the limits ALS has imposed on their lives. And as people with ALS, their families and caregivers continue their fight against the disease, each day they hold onto the hope that our nation will find effective treatments and a cure for ALS.

Unfortunately, we currently do not know what causes ALS or how it can be prevented and cured. Moreover, only one drug, approved by the FDA in late 1995, currently is available to treat ALS. But we can help change this through the establishment of a nationwide ALS registry.

A single national patient registry which collects and stores information on the prevalence andincidence of ALS does not exist in the United States today. The establishment of a national registry not only will help identify the incidence and prevalence of ALS in the United States, but also will collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.

The ALS Registry Act would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry. In addition to collecting data on the number of people living with ALS and the rate at which ALS occurs in the U.S., the registry would gather data on environmental and occupational factors that may be associated with the disease, the age, race and ethnicity of individuals with ALS, family history, and other information that may be beneficial to advancing ALS research and care. The registry would identify, build upon, and coordinate with existing data, surveillance systems and registries, such as state-based ALS registries, the Department of Veterans Affairs ALS registry and the Human Genetics ResourceCenter at the National Institute of Neurological Disorders and Stroke (NINDS). Information collected by the registry also would be made available to the National Institutes of Health and the Department of Veterans Affairs. Importantly, the bill would establish a National ALS Registry Advisory Committee that would make recommendations on the development and maintenance of the registry, the type of information to be collected and the use and availability of that information. The Advisory Committee would be comprised of people with ALS and their families, ALS organizations, researchers and other ALS professionals.

The ALS Registry Act is an important step in the fight to make ALS a disease of the past. Please support and cosponsor the bill when it is introduced in the Senate. Contact Carolyn Gluck in Senator Reid’s office (4-3542) to become an original cosponsor of this vital legislation.

Thank you for your consideration of my concerns. I hope that you will join your constituents in the ALS community in our state as we continue to fight for a treatment and cure for ALS.

Sincerely,

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Signature

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