Good afternoon Chairman Hall, Congressman Lamborn and Members of the Subcommittee.  My name is Jeff Faull and I am from a small town in northeastern Pennsylvania called McEwensville.  I appreciate the opportunity to speak with you this morning on behalf of The ALS Association and veterans living with ALS across the country.  I hope that by sharing my experience with you today, you will gain a better understanding of how this disease impacts veterans across the country and why H.R. 5454 is so urgently needed.  

Before I begin, I would like to thank Congressman Henry Brown and Congressman David Price for their leadership in introducing this vital legislation.  Veterans with ALS across the country truly are grateful for their efforts.  

I joined the Navy in 1992 at the age of 24 and served two tours of duty as a nuclear electronics technician (Navy Nuke), including over 4 years aboard the U.S.S. Theodore Roosevelt. During that time I participated in Operations Southern Watch, Deliberate Force, Allied Force and Noble Anvil.  Prior to my assignment aboard the Roosevelt, I was stationed at the Knolls Power Laboratory Kesselring Site in West Milton, NY located not too far from your district Mr. Chairman.   

I left the Navy in 2000 to spend more time with my wife Tammy and our two daughters Tiffany and Breanna.   Like many other veterans, I never thought that my service in the military would cause health problems years after I left the service.  I never thought that I would have to fight to obtain benefits from the VA and I never thought I would be sitting here before you today having been diagnosed with ALS, or Lou Gehrig’s disease.  But for me and thousands of veterans across the country, the reality is that, years – and even decades - after serving our country, we are being diagnosed with ALS and we are fighting for benefits at the same time we are fighting this disease. 

I was diagnosed with ALS just over a year ago in February 2007 at age 38, about twenty years younger than the typical person with ALS.  At the time, I had no idea what ALS was.  Amyotrophic lateral sclerosis meant nothing to me, as I’m sure it means nothing to thousands of others when they are first diagnosed.  But I can assure you it’s a whole different story when your doctor uses phrases such as “unfortunately, you don’t have cancer.”  That’s when you begin to understand how serious ALS really is.

ALS is a rapidly progressive, invariably fatal, neurological disease that attacks the neurons responsible for controlling voluntary muscles.  To put it simply, this disease will rob me of my ability to walk, talk, move and breathe.   There is little I can do to slow the progression of the disease as there is no effective treatment available for ALS, nor is there a cure.   The disease is usually fatal in about two to five years.  In fact, of the more than 2,000 veterans who have enrolled in the VA ALS registry over the past four years, less than 900 are still with us today.    

I first noticed the symptoms of ALS as early as 1999 when I experienced cramps and twitching in my left hand and arm. As time passed, I began to develop weakness then loss of muscle mass, which eventually led to my diagnosis last year.  Since my diagnosis, the weakness and atrophy which began in my left hand has not only worsened but spread. Both hands and arms are now weak, walking is becoming more difficult and, as you can hear, my speech is beginning to be affected.  

I keep a pair of slip-joint pliers in the kitchen to help open things. My wife Tammy who’s with me here today normally makes sure that things like cereal boxes are opened for me otherwise I have to ask for help from my daughters.  Although they are more than happy to help their “old man” this is not how I pictured spending my time with my daughters.  I can’t make the walk to see Breanna play soccer. I don’t have the arm strength to shoot a basketball with my older daughter Tiffany. I will more than likely be in a wheelchair when it comes time to teach them to drive. These are the treasures this disease steals from thousands of veterans every year.  That is, before the disease takes our lives. 

Several studies, including studies funded by the Department of Defense and the Department of Veterans Affairs have found that military veterans of the 1991 Gulf War are approximately twice as likely to develop ALS as those not deployed to the Gulf.   As a result, the Secretary of Veterans Affairs established a presumption of service connection for those veterans with ALS who served in the SW Asia Theater of Operations from August 2, 1990 to July 31, 1991. 

However, the increased risk of ALS is not confined to veterans of the Gulf War, nor is it limited to veterans who served during a time of war.  Researchers at Harvard University have found that military veterans from other eras, ranging from before World War II to after Vietnam, also are nearly twice as likely to develop ALS as those who have never served in the military.  The study did not even consider Gulf War veterans.   Moreover the study showed that veterans were at greater risk of ALS regardless of whether they served during a time of war or peace, or whether they served at home or abroad. 

The Institute of Medicine reviewed these and other studies and reported in November 2006 that existing evidence supports the increased risk of ALS for veterans.  In fact, I understand that recent research, which has not yet been published, suggests that ALS is occurring at greater rates in those who are serving in the current conflict in Iraq.  And what’s alarming about this information, and the evidence from prior research is that we are seeing ALS in veterans at an age when we generally do not see the disease.  I was 38 when I was diagnosed.  Most people are diagnosed in their 50s, 60s and 70s.  What will we see 10, 15, 20 years in the future as the men and women serving today leave the military? 

It is clear that regardless of when or where someone served in the military, they are at a greater risk of dying from the disease than if they had not served in the military. 

The Department of Defense and the VA also recognize that there is a relationship between military service and the development of ALS.  In addition to Gulf War veterans, veterans who experience symptom onset or are diagnosed with ALS while on active duty or within one year of discharge are presumed service connected.  DOD, VA and Congress also have invested funding for ALS research, including establishing the Veterans ALS Registry at the VA and creating the peer reviewed ALS Research Program at DOD, which is seeking treatments for veterans with ALS.

However, despite the evidence showing that all U.S. military veterans are at a greater risk of ALS, the VA has not created a presumption of service connection for all veterans with ALS.   Thousands of veterans continue to be left behind and hundreds of thousands serving in the military today, including in Iraq and Afghanistan, continue to be at a greater risk of dying from the disease.  

The VA will respond that any veteran with ALS can be granted service connection on the basis of specific evidence supporting their case.  As someone who has been denied service connection, and knows countless others who have as well, I can tell you that this response demonstrates a lack of understanding of the disease.

The reality is that the majority of veterans with ALS, who do not fall under the current limited presumptions, are forced to fight for their benefits.  And we are usually denied.   I have been attempting to establish service connection for over a year now and have submitted reams of scientific and medical evidence, including letters supporting my claim from my neurologist.  Yet that evidence has fallen on deaf ears.

Part of the problem we face is the nature of the disease itself.   ALS is an insidious disease.   First the symptoms, such as the ones I experienced while on active duty, are so benign that they go unnoticed or unreported.   How many of us in this room have experienced muscle cramps and twitching and thought nothing of it?  These are symptoms of ALS, yet they are not documented in our service medical records simply because we did not think they were a big deal at the time – after all, we were in the military.   How many of us on active duty actually thought that we would succumb to muscle twitching?  

In addition, it can be years from discharge until the onset of symptoms or between onset and diagnosis - well after the one year presumptive period has ended.  And there is no simple way to diagnose ALS, no single test you can take that says you have ALS.  Rather it is a diagnosis of exclusion, made by ruling out every other possible diagnosis.   

The bottom line is that if you were not diagnosed while on active duty and did not serve in the Gulf, the VA likely will not consider ALS to be service connected.  This, despite the studies and the fact that the VA and DOD both recognize ALS to a high priority for research. 

In addition to the studies that I have referenced and which are included in the ALS Association report, ALS in the Military; the Unexpected Consequences of Military Service, there are multiple peer reviewed studies linking ALS to many of the things our military personnel are exposed to on a regular basis.  These include ionizing and non-ionizing radiation, fuels, solvents, lead, vapors and vaccinations.  In fact, recent peer reviewed studies and World Health Organization guidelines link some of the vaccines given to our military personnel as a possible cause of ALS.   

My question, as a veteran with ALS trying to establish service connection is what additional proof must I provide?  How many more studies are needed?  How many veterans have to develop ALS and die from it before the VA takes action?  

I can only hope that this quick glance into my life with ALS and attempts with service connection grant you the understanding to see the importance of establishing a presumption of service connection for all veterans with ALS, which is exactly what H.R. 5454 would do.  We have to fight for our lives. We should not also have to fight for the benefits that the evidence shows we deserve.

Abraham Lincoln’s statement which was later adopted by the VA as their motto states, “to care for him who shall have borne the battle and for his widow, and his orphan”.   I and the other veterans with this horrible disease appreciate your time and effort to ensure that statement is more than words.  I urge you to support H.R. 5454 and help ensure that no veteran with ALS is ever left behind.   Thank you again for your time and the opportunity to speak with you.