National ALS Registry Update

February 15, 2006

 

ALSA to Continue Fight for ALS Registry

 

The Advocacy Department of The ALS Association is pleased to announce that Congress provided $900,000 to launch a national ALS registry as part of the FY 2006 appropriations bill that funds the Department of Health and Human Services.  The spending bill, which recently was enacted into law, is an important first step in establishing a permanent national ALS registry.  However, it still is critical that Congress pass the ALS Registry Act (H.R. 4033/S. 1353), which authorizes $25 million to establish a national ALS registry. 

 

The ALS registry is one of only three new programs to be included in the entire Department of Health and Human Services section of the $602 billion spending bill.  This accomplishment is indeed a testament to the efforts by advocates to raise awareness of the need for an ALS registry at Advocacy Day last year.  It also demonstrates how our year-round advocacy efforts in support of the ALS Registry Act truly made a difference.  However, the ALS community must continue to keep up the fight for an ALS registry.

 

We are extremely disappointed to learn that the Administration’s FY 2007 Budget, submitted to Congress this month, did not request funding for the registry in FY 2007.  Many of you may have read about this in a recent story that appeared in the Washington Post.  The Advocacy Department issued a statement strongly criticizing the Administration’s action. The statement can be found on the ALSA website at http://www.alsa.org, and also is included at the end of this update. 

 

While we are displeased that the Administration has decided not to fund the registry beyond 2006, it is important to note that the release of the Administration’s Budget only marks the beginning of the annual budget process by which Congress and the President determine how federal funds eventually will be allocated to federal agencies. It does not eliminate the current funding for the registry.  In fact, the Centers for Disease Control and Prevention (CDC) has informed Congressman Eliot Engel (D-NY), the sponsor of the ALS Registry Act in the House, that the agency will spend the $900,000 on the registry in 2006.  

 

Nevertheless, the Administration’s action makes it clear that the ALS community must continue our fight to pass the ALS Registry Act and ensure that Congress and the Administration provide funding to establish and maintain a national ALS registry for years to come.  That’s why it is now more important than ever that everyone who has been touched by ALS contact their Members of Congress and ask that they cosponsor the ALS Registry Act.

 

A bipartisan group of more than 70 Representatives already have cosponsored the House bill, H.R. 4033, which was introduced by Reps. Engel and Lee Terry (R-NE).  Seventeen Senators have cosponsored the Senate bill, S. 1353, which was introduced by Senators Harry Reid (D-NV) and John Warner (R-VA).  The bill would build upon the initial $900,000 investment and authorize $25 million to establish a registry at the CDC.  

 

The support we have received so far from Members of Congress has been tremendous and we are pleased that Congress has taken the first step in creating a national ALS registry.  But much more work needs to be done.   Therefore, we again urge everyone in the ALS community to contact their Members of Congress and request that they cosponsor the ALS Registry Act.  Sample letters to send to Congress are available in the Advocacy Action Center, which can be found in the Public Policy Section of the ALSA website at http://www.alsa.org/policy.

 

If you have any questions or would like additional about ALSA’s efforts to establish a national ALS registry, please contact Pat Wildman in the Advocacy Department at pwildman@alsa-national.org or toll-free at 1-877-444-ALSA. 

 

 

Text of the Advocacy Department Statement on the Administration’s FY 2007 Budget

 

Administration’s FY 2007 Budget:

A Step Back in the Fight Against ALS

 

The ALS Association (ALSA) is deeply disappointed to learn that the Administration’s FY 2007 Budget eliminates funding to establish a national ALS registry at the Centers for Disease Control and Prevention. Such a registry would help to identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. 

 

The release of the Administration’s FY 2007 Budget marks the beginning of the annual budget process by which Congress and the President determine how federal funds eventually will be allocated to federal agencies.  Despite the Administration’s action, ALSA will continue to work with our supporters in Congress to restore this funding and create a national ALS registry that will help to make ALS a disease of the past. 

 

Last year, The ALS Association and advocates from across the country worked closely with Members of Congress in support of initiatives to establish a national ALS registry.  In fact, a bipartisan group of 69 Representatives and 17 Senators have cosponsored the ALS Registry Act (H.R. 4033/S. 1353), which was introduced in Congress by Reps. Eliot Engel (D-NY) and Lee Terry (R-NE) and Senators Harry Reid (D-NV) and John Warner (R-VA).  In addition, Congress appropriated $900,000 in start-up funding to launch an ALS registry as part of the FY 2006 Labor/HHS spending bill. 

 

“Congress clearly recognizes the urgent need for an ALS registry,” says ALSA Vice President of Government Relations and Public Affairs Steve Gibson.  “The funding they provided is an important first step in establishing a program that could enable our nation to make unprecedented progress against this horrific disease.   Unfortunately, the Administration’s budget fails to follow the lead set by Congress and instead represents a step back in the fight for a treatment and cure for Lou Gehrig’s disease.”

 

The Administration’s action sends an alarming message to our heroes currently risking their lives defending our country in Iraq, Afghanistan and around the world.  Studies, including ones conducted by researchers at the Department of Defense, the Department of Veterans Affairs and Harvard University, continue to show that those serving in the military are at a greater risk of dying from ALS than those with no history of military service. 

 

“An ALS registry, as proposed in Congress by Representatives Engel and Terry and Senators Reid and Warner, and funded in the FY 2006 Labor/HHS appropriations bill, could yield important clues about ALS, what causes the disease, how it may be prevented, treated, and ultimately cured,” says Gibson.  “These advances surely will benefit our heroes in the military and all Americans whose lives have been touched by ALS.” 

 

The ALS Association and our more than 40 Chapters and affiliates across the country believe it’s time that the Administration respond to the concerns of the ALS community, the public and the Congress, and join our fight against Lou Gehrig’s disease by establishing a national ALS registry.

 

ALSA urges everyone in the ALS community to contact their Members of Congress and request that they cosponsor the ALS Registry Act.  Sample letters to send to Congress are available in the Advocacy Action Center of the ALSA website at http://www.alsa.org/policy.

 

 

Become an ALSA Advocate! 

PALS, their families and caregivers, and others who would like to join our fight against ALS can help spread the word in Congress by signing-up to become an ALSA Advocate via our website at www.alsa.org/policy/involved.cfm.  As an ALSA Advocate, individuals will receive Advocacy Updates and other information that will help them to raise awareness of ALS in Congress and make a difference in the fight for a treatment and cure for ALS.