To all, Please read the below press release but more importantly go to the link below to see the exact wording of the regulation. The press release overlooks some very important positive information. Please send this to any veterans with ALS who you know. Publication is tomorrow, 23 Sept.

Do not release my email address. Thank you.

A victory for veterans and ALS, Tom

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Subject: Interim Final Rule to be published 09.23.08



New Regulation establishes ALS Presumption



ALS (also called Lou Gehrig’s disease) is a neuromuscular disease that affects about 20,000 to 30,000 people of all races and ethnicities in the United States, and is often relentlessly progressive and almost always fatal.
The cause of ALS is unknown and there is no effective treatment.
The new regulation establishes a presumption based primarily on a November 2006 report by the National Academy of Sciences Institute of Medicine (IOM) on the association between active duty service and ALS.
The IOM study found that the available literature is suggestive of an association between military service and ALS in humans.
An interim final regulation, new 38 CFR 3.318, provides that:
The development of ALS at any time after discharge or release from active military, naval, or air service is sufficient to establish service connection for that disease.
The presumption of service connection for ALS does not apply if there is affirmative evidence that ALS was not incurred during or aggravated by such service or affirmative evidence that ALS was caused by the veteran’s own willful misconduct.
The presumption of service connection for ALS does not apply if the veteran did not have active, continuous service of 90 days or more.
The rating criteria for ALS in VA’s Schedule for Rating Disabilities is dependent upon the severity of the disease and its effect on the body systems involved. The minimum rating for ALS is 30 percent.
The new regulation will apply to all applications for benefits that are received by VA on or after September 23, 2008, or that are pending before VA, the United States Court of Appeals for Veterans Claims, or the United States Court of Appeals for the Federal Circuit this same date.


I know many have been very active on this issue – and this is great news. Please do not hesitate to contact me if you have any questions.



Since the Federal Register previews the printed publication on the Web:

http://www.federalregister.gov/OFRUpload/OFRData/2008-21998_PI.pdf



Christine

Christine O. Hill

Acting Assistant Secretary

Office of Congressional and Legislative Affairs

Department of Veterans Affairs

202-461-6490

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Carol Hamilton
Director of Government Affairs
ALS Therapy Development Institute

PLS/ALS- The latest research paper released from JOHN HOPKINS clearly states that PLS is the RAREST form of ALS,Also my local PVA rep told me the head NEURO at the local VA hospital in SAINT LOUIS told him PLS is ALS.

JOHN BENWELL

John,

Thanks for the info.

NOTE: I have been going around and around with the VA over the ALS VS PLS issue and everyones comments about there is not way you can link them. Well I just did but it involved a backdoor method. I wrote to the VA in Washington DC to their legal department and asked two questions. and receivied 2 answers to those questions. With that answer in hand the VA had now reversed 180 degrees in their rating decision. A little background. I have 3 letters 1 from Johns Hopkins, one from my local Neurologist, and one from my primary care doctor. Johns hopkins says I deffenatly have PLS and they beleive it is now progressing to ALS as there are signs of lower motor neuron involvement. My neurologist simply says there is no doubt and that he certifies that I have full ALS. My primary care says the same as the neuroligist. However the VA tuned into the PLS immediatly and freely admitted that I had PLS but it was not covered as it is not in the rating tables.

My questions and answers from the legal Department sent to me and to the VA facility in Delaware handling my case.

1. Question "Where is PLS or UMN-Dominant ALS listed in the rating Schedules.

2. If they are not listed where do you plan to place us?

Answer by VA it self regarding PLS. "ALS is in the rating schedule under neurological disorder. PLS is not listed in the rating schedule. PLS would be rated analogous to ALS because much of the symptomatology is the same.

Answer to question 2 "Same as the above answer"

I did not have to send the letter to the VA doing my rating as they received a copy of it and as of last week their statement to me was that the PLS issue is resolved and that because of the legal/medical opinion of W. Glover Veterans Service Center Manager has put to rest the debate and that I will be placed in the same catigory as any ALS patient. It took almost 3 months to get the response back but it was worth the wait, but maybe a bit late as I am now losing my breathing ability and have been to the ER 3 times now to stabalize my beathing with medications but according to the doctors there is plenty of evidence that it has now involved the lower neurons and it has become full ALS. However I hope that this letter would help any Veteran who is stuck in the ALS vs PLS issue. I am more than happy to make copies for others who may need it. I had one person comment that if you have PLS you do not deserve to receive anything as it does not cause any problems. That is a very incorrect statement as when I was told I had PLS only I lost my ability to drive and the number of issues it medicaly caused was more than a simple letter could describe. I may now have full ALS but I do not want to forget about the other Vets that have PLS and are fighting for their pensions and only wish they could be as fortunate as I was in receiving the letter clearifying the differance

That was great reading, Really you have provided the best information..thanks.