VA Error Leads to ALS Notification Letters

Editor's Note:  The following correspondence has been circulating rapidly in the U.S. Gulf War community today.

The first is an email from disabled West Virginia Gulf War veteran Brent Casey, who is among about 1,200 veterans inadvertently notified by the VA's Huntington, West Virginia Regional Office that they have ALS -- a terminal neurodegenerative disorder -- when in fact they do not have the disease.

The second is an email issued by Veterans for Common Sense regarding the situation.

===============

From: Brent Casey

To: undisclosed recipients

Sent: Friday, August 21, 2009 5:43 PM

Subject: Brent Casey diagnosed with ALS (Lou Gehrig’s Disease), by mistake ?? !!

I do not have ALS ! The first thing I would like to do, is say "THANK YOU" to my wonderful, wife, mother, aunt, and grandfather for their very powerful prayers ! As many of you know, I received a letter on Wednesday afternoon, 19 Aug. 2009, from the VA Regional Office in Huntington, WV; stating , "according to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS) " The letter was signed by Joseph R. Beadoin, Veterans Service Center Manager.

As you can imagine, but I am not sure you can, I had the most horrific, incredible melt-down, nervous-breakdown, uncontrollable sobbing fit, I have ever had in my life ! I realized at that moment, I had been delivered a "DEATH NOTICE" by the Post Office ! Unfortunately for me, I had done extensive investigation of ALS and it's rapidly progressive, invariably fatal neurological symptoms/disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.. Some people say it is the most cruel disease that a person can contract because it slowly deteriorates the entire body, while the mind stays healthy. As I sobbed to my mother over the phone, "there is no cure, it is a DEATH SENTENCE, and I will be dead in 3-5 years !".

At this point, it was too late to call the VA Office, so, after an extremely, restless, sleepless, night, I called the Director's Office at the Huntington RO, at 8:00 a.m. Sharp !
I asked for and spoke to Mr. David Allen right away, and explained the letter and that I was incredibly upset, to say the least. He took some brief notes and asked to call me back shortly. At about 10:00 a.m., Mr Allen called back and stated that, he had put the VA into an EMERGENCY MODE OF OPERATION in order to locate my file and try to get to the bottom of the situation, but, after reading through my file, he had no explanation yet.

Later that afternoon, I spoke to Mr. Allen, once again. By this time, my mother had delivered the letter to the Regional Office, and left a copy for their examination. Mr. Allen had the letter and was looking at it but still had no explanation and was in obvious disbelief, himself.

About 2:00p.m., Mr Allen called me again. He stated that there was no way possible to express enough apology to make up for the extreme mental anguish that this had caused me, nor, the emotional trauma that I must have experienced, but he did apologize greatly. He said, the whole thing is just a huge mix-up and an error on the part of the VA. He stated that in 2006, I had filed a claim for neurological damage due to Gulf War Illness and it was given the wrong diagnostic code, which has since been given to ALS. Subsequently, myself, along with about 1200 other Veterans, were sent this letter by mistake.

I told Mr. Allen, that I would try to find a way to understand how this could happen, but my biggest concern is for those other 1200 who are not having this conversation and getting this explanation ! My question is, "What about those guys?"

I spoke to my Primary Care doctor over the phone today after she had reviewed my entire record in detail, and she has assured me that there is no way possible I have ALS; I have a negative Brain Scan MRI, and a negative EEMG test. PRAISE THE LORD ALMIGHTY !!!!!

I would like to ask those of you that read this, Please do whatever you can to get the word to those other 1200 veterans, and please write a letter to the Director of your local VA, to get assurance that these types of diseases or disorders are NOT delivered to the Veteran by the Post Office. Our VA System is better than that, and they know the appropriate way these type cases should be handled.

Respectful and Grateful,


Brent Casey
100% Disabled American Veteran


===============================

August 22, 2009
Dear VCS Members,
Yesterday, VA Central Office in Washington, DC was notified by Veterans for Common Sense about highlly unusual letters sent by the Veterans Benefits Administration (VBA) regional offices to an unknown number of veterans. The VA letters, dated within the past two weeks, advised some veterans they had ALS – amyotrophic lateral sclerosis, a serious disease that is often fatal - when the veteran did not have ALS. The letter caused enormous grief and distress among veterans, several of whom then contacted Veterans for Common Sense.
VA Central Office is now investigating the incident.
Several of my fellow Gulf War friends died from ALS, and this issue is near and dear to my heart. I fully understand the enormous anxiety the VA letters may have caused many veterans and their families.
The first thing VA must do is stop sending these mistaken letters. I hope VA apologizes for the letters sent to veterans who were not diagnosed with ALS. VA appears to have sent the letter with the good intent of notifying veterans about a new regulation expanding disability compensation benefits to veterans diagnosed with ALS. VA had previously denied most ALS claims until new scientific evidence linked ALS with military service, especially among Gulf War veterans. To learn more about VBA disability compensation for ALS, please read this September 23, 2009, VA press release.
I would ask that we direct our efforts toward working with VA so VA will stop sending more erroneous letters and resolve the situation. VA should apologize to veterans and their families. VA should try to figure out how this mistake happened so it does not happen again. Some veterans wrote and said they sought medical care and incurred expenses with private doctors – and VA should pay for those expenses apparently caused by VA’s mistaken letter. And finally, a medical professional with experience dealing with ALS patients should have read the letter before it went out, since the tone of the letter was rather stark, ominous, and inappropriate.
So let’s give VA a day or two to figure out how to resolve this issue. I’m asking for calm among veterans and advocates for a few days over the weekend so VA can investigate the situation and respond in the best interests of our veterans and their families clearly shaken by the letters.
Please share our VCS e-mail with our fellow veterans, especially Gulf War veterans and ALS mailing lists. VCS will post additional information as it become available. The text of the letter appears below.
Thank you, Paul.
Paul Sullivan

Executive Director

Veterans for Common Sense

Post Office Box 77304

Washington, DC 20013

(202) 558-4553

Paul@VeteransForCommonSense.org

www.VeteransForCommonSense.org

===========================
Veterans Benefits Administration Letter
August 11, 2009
Department of Veterans Affairs
[Location Redacted]
[Name and Address of Veteran Redacted]
According to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS). This letter tells you about VA disability compensation benefits that may be available to you.
Service-Connected Disability Compensation for ALS
VA published a new regulation, 38 CFR 3.318, that provides the development of ALS at any time after military discharge may establish service connection for that disease if the veteran had active, continuous service of 90 days or more. Because of your diagnosis of ALS, you may be entitled to compensation from VA. There are no provisions for payment of benefits prior to September 23, 2008, which is the effective date of the regulation.
How to Apply for Disability Compensation
You can apply online (http://vabenefits.vba.va.gov/vonapp) or submit VA Form 21-526, Veterans Application for Compensation and/or Pension, to your nearest VA regional office. The form is available from VA's website (http://www.va.gov/vaforms) or by calling the toll-free number below.
If you previously applied for compensation, you can reopen your claim by submitting a written request (a new application form is not required) to the VA regional office. Be sure to include your full name, VA file number, and/or your Social Security number.
For more information or to request an application, call toll-free, 1-800-827-1000. (The Telecommunications Device for the Deaf number is 1-800-829-4833.) You may also visit VA's website (http://www.va.gov/) or send an electronic inquiry (https://iris.va.gov/).
Sincerely,
[Name Redacted]
VETERANS SERVICE CENTER MANAGER

===========================