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.

Friday, August 1, 2008

Information for Veterans with ALS from ALSA

Following is from ALS Association Washington, DC office --

Veterans Benefits Update
As you know, The ALS Association has been working to establish ALS as a service connected disease to ensure that veterans with ALS receive the disability and health benefits they need when they need them. In July, we shared with you that the Secretary of Veterans Affairs was planning to announce that veterans with ALS will automatically be considered service connected and eligible for full VA benefits, as of today, August 1, 2008.

We wanted to update you that the VA has not made any announcement of a change in policy for veterans with ALS. However, we continue to anticipate that the VA will issue regulations on this issue and will establish ALS as service connected disease. The details of those regulations are still under review at the VA and it is not yet clear exactly when regulations will be officially announced.Therefore, until regulations are released and the VA makes an official announcement, we continue to emphasize that the issue is still under review and details have not been finalized.

We also want to alert veterans with ALS and ALS Association Chapters that some organizations have released and posted on their website inaccurate and misleading information about this issue stating that veterans with ALS are considered service connected as of today, August 1. THIS IS NOT TRUE. Unfortunately, the organizations that have shared this information have not been involved in the executive branch rulemaking process and have based their information on unsubstantiated accounts. We encourage Chapters and veterans to share this alert with others in the veteran community so that they receive accurate information on the status of this important issue.

We also encourage veterans to join our
Roll Call of Veterans so that we can provide them with the latest updates on this and other issues important to veterans with ALS. As The ALS Association and our VA Issue Team continue to work with the VA, we will keep you posted on the latest developments on establishing ALS as a service connected disease. If you have any questions, please contact the Advocacy Department of The ALS Association at


  1. I believe the Bill H.R. 5454 has to become law before veterans with ALS can benefit from this policy change?

  2. I'm not an expert, but the comments I have seen are that the policies and rules that were expected on August 1 are still expected to be forthcoming.

    I also understand that H.R.5454 is still on the table.

    I'm not sure if H.R.5454 a safety-net in case the VA does not deliver, or if it's needed to give the whole concept some permanence. I've not seen a definitive statement in that regard but will post on this site if I see anything beyond speculation.