Final Rule.9/23/08. Presumption of Service Connection for Amyotrophic Lateral Sclerosis  page 54691 Col. 3. 
 “The cause of ALS is unknown, but these studies indicate that there exists a statistical correlation between activities in military service and development of ALS.”  Service connection is granted, due to statistical evidence, if the vet has served over 90 days. 

UNLESS, get ready for some truly disgusting VA meanness (page 54692, Col.2)

Paragraph (b) of new § 3.318 provides that this presumption of service connection for ALS does not apply if there is affirmative evidence that ALS… was caused by the veteran’s own willful misconduct.

We recognize that there is very little likelihood that either of those standards will be met with regard to any particular claim, but we believe these provisions properly reflect Congress’ intent, as expressed in 38 U.S.C. 1113, that evidentiary presumptions of service connection should not operate when there is affirmative evidence to the contrary or evidence of willful misconduct.

How low can these people go? Is this in fact Congress’ intent–to keep a fairy tale ALS-in-service misconduct link in the realm of possibility?  Do they fear a large increase in cases? No matter what the motivation, it’s sick.

ALS is a rare disease yet according to one influential report (link below), ALS is less rare”among men who served in the military in the period 1910-1982, regardless of which war or wars the men served in. Risk was also increased among men who served in the military during nonwartime periods.”

Our family lost a member to non-familial ALS this summer.  This cruel disease came out of nowhere and swiftly took her life.  While my relative was losing her battle this past summer, many Americans were participating in the Ice Bucket Challenge.

A worthwhile awareness and fund-raising effort in my view–no matter who helped out.

But back at the Pentagon, bureaucrats forbade servicemen to participate if on duty or in uniform. Even though the VA established a ALS registry April 2003- 2009 (now closed. Veterans w/ALS are reported to the National Registry.) And even though ALS was established “… as a Presumptive Compensable Illness” in 2008.

Hawking receiving Medal of Freedom in 2009

ALS is fatal but a few people, most famously StephenHawking, live extended lives with 24/7 health care.  The highest risk factor for getting ALS, appears to be military service.   The government ordered a study. They got Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature (2006).  (Free download, 63-pages, after registration at the Institute of Medicine.) 

In 2001, a VA policy allowed some Gulf War veterans who “served in the Southwest Asia Theater of Operations during the period August 2, 1990-July 31, 1991, and who later developed ALS” to receive disability compensation. Then the government acted on the study finding and all notified vets with ALS got some relief.

 The new interim final regulation applies to all applications for benefits 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 on that date.  VA will work to identify and contact veterans with ALS, including those whose claims for ALS were previously denied, through direct mailings and other outreach programs.

The VA published the rule in the Federal Register as Doc. #E8-21998.

VHA Handbook (2014) AMYOTROPIC LATERAL SCLEROSIS (ALS) SYSTEM OF CARE PROCEDURES gives the list of VISNs with ALS teams.  The Paralyzed Veterans of America contributed to its drafting and advocated its publication.  Kudos to PVA.

This Air Force veteran is one of the 1% of patients who live beyond five years.

If you need some inspiration, do read his story here.