The ALS Association’s 2009
Public Policy Priorities

(February, 2009)

• Appropriate $5 million as part of the FY 2010 Labor/HHS Appropriations bill to continue the ALS registry at the Centers for Disease Control and Prevention.  On October 8, 2008 the President signed into law the ALS Registry Act (P.L. 110-373), which authorizes the CDC to establish a national ALS patient registry to identify ALS cases in the United States and collect information urgently needed for ALS research.  The new law also builds on projects currently underway at CDC designed to determine the most effective and efficient ways to identify ALS cases and to share information. To date, Congress has provided nearly $5 million for the ALS registry projects, including $3 million in FY 2008. In addition, the Senate version of the FY 2009 Labor/HHS Appropriations bill included $5 million for the registry and the House bill included $2.8 million.  
  
  Funding is needed in FY 2010 to build upon these projects and enable the CDC to implement the ALS Registry Act, including to meet reporting and progress deadlines set by Congress. In addition, this funding will allow CDC to begin to collect information on a broader scale and explore opportunities for the registry to facilitate public health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies that identify new treatments for the disease.

• Appropriate $5 million to continue the Peer Reviewed ALS Research Program (ALSRP) at the Department of Defense (DOD).  Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans are approximately twice as likely to die from ALS as those who have not served in the military.  
  
  To date, Congress and the DOD have provided a total of $10 million in funding for the ALSRP, including $5 million as part of the FY 2009 DOD Appropriations bill. By appropriating $5 million in funding in FY 2010, Congress can support our military men and women and continue this vital program, which is the only ALS-specific research program supported by the DOD.  Unlike many other research efforts, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist.  The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed. In this way, the ALSRP can help us learn why our nation’s veterans are at greater risk of the disease and take action to protect them and all people whose lives have been touched by ALS. 

• Pursue initiatives to ensure military veterans with ALS have timely access to health and disability benefits through the Department of Veterans Affairs. In 2008, the Department of Veterans Affairs implemented historic new regulations that establish ALS as a service connected disease, regardless of when or where a person served in the military and regardless of when they were diagnosed following discharge. The regulations provide veterans diagnosed with ALS and their survivors access to benefits that include monthly disability compensation, survivors benefits, adaptive housing and vehicle grants, aide and attendant benefits, and full health care, including prescription drugs and durable medical equipment. 
  
  While the new regulation affords veterans with ALS an unprecedented level of benefits, veterans nevertheless have experienced difficulties and delays in accessing benefits. The application process can be cumbersome and challenging and veterans may be forced to wait as long as six to twelve months before their claims are processed.   Moreover, veterans may not immediately receive the highest level of benefits possible as the process may not recognize the progression of the disease and local VA field stations may not be familiar with ALS or the new regulations.  Because ALS is a rapidly progressing disease, with a life expectance of just two to five years, it is vital that veterans have access to the highest level of benefits as soon as possible.

For additional information about our 2008 Priorities, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA.   

 2008 Advocacy Priority Review and Legislative Recap 

 2007 Advocacy Priority Review and Legislative Recap 

 2006 Advocacy Priority Review and Legislative Recap 

 2005 Advocacy Priority Review and Legislative Recap