Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, February 9, 2009

ALSA 2009 Advocacy Priorities - Take II

From ALSA website

Last item is new since the printed document posted a few days ago. It refers to getting our veterans the benefits to which they are already entitled.

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 or 1-877-444-ALSA.


  1. I don't get it...

    Registry isn't being approached aggressively. They're talking about "collect information on a broader scale and explore opportunities." That sounds like a $5 million baby step rather than a march toward complete reporting of ALS cases.

    If VA isn't providing veterans benefits correctly and efficiently, why does it need to become a public policy priority rather than a "just do it" initiative to train the VA staff NOW?


  2. If the stimulus package includes funds for electronic medical records (and that seems to be a priority for the new administration), will that make the "pilot" registries passe? Will electronic medical records not make it a lot easier for the CDC to mine the ALS diagnoses? Should we be moving in that direction?

  3. Maybe a little investigative reporting would take care of the VA problem stat. Walter Reed should have taught us that. Anybody know anybody at the Washington Post?


    Same problem, different government agency.

    Do we see a pattern here?

  5. There is a message on the forum at that indicates that the Paralyzed Veterans of America (PVA) can be helpful in expediting processing with the VA... just in case that info might be helpful to anyone.