VA Inadvertently Sent Letters ALS Diagnosis to 1200 Veterans


From the National Gulf War Resource Center VA inadvertently sent letters to at least 1200 veterans notifying them that they have the terminal illness amyotrophic lateral sclerosis commonly known as ALS. 

Letter from the VA States:  "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." 

This letter was automatically generated and sent to no less then1200 veterans, The VA is still working to get the total number.  The 1200 may just be from the West Virginia VARO. The NGWRC is receiving phone calls from many veterans concerned they may have a terminal illness.( Alabama, West Virginia, Florida, Kentucky, Kansas, Wyoming, so far)  Many of these veterans went to private clinicians to get a second opinion.  This second opinion outside of the VA is very expensive and can range from $1000 to $3000 or more.


The National Gulf War Resource Center requests that the VA set up a hotline for veterans to respond to this letter.  It also requests that any outside expenses for testing and travel to and from their primary care clinician be reimbursed by the VA.  This is a terminal disease many veterans may believe that they are about to die.  

The VA has an obligation to go on television and make public service announcements to prevent veterans from becoming overly alarmed.  In addition, each veteran that was notified should be rescreened by the Department of Veterans Affairs for neurological issues that are undiagnosed.  While it remains to be seen how this debacle happened we know what needs to be done right now to prevent further harm.  

We expect the VA to rapidly notify by telephone each veteran on the list.  

Thousands of Gulf War veterans remain ill and so far, the VA does not have any treatment for their chronic multi-symptom illness.  One common factor amongst Gulf War veterans is undiagnosed neurological conditions.  These veterans need to be rescreened.  If you are a veteran who received this notification, please contact the National Gulf War Resource Center and we will advocate on your behalf.

Additional contact  [email protected]

Additional Information on this situation from the writer of this article and from Veterans Today:

According to NGWRC, these Letters started to appear in veterans mail boxes  and the Service Manager at West Virginia RO was notified by one of the veterans on Thursday. 

The National Gulf War Veterans Resource Center was notified by two veterans in two different states on Wednesday and was the first to issue a Press Release on this issue.  We are aware that the Alabama and West Virginia RO’s have started to call the individual veterans that received these letters.

The letter to the Alabama veteran was dated on 12 August and she received the call from the service manager of the RO(that sent the letter) on the Friday the 21st.  The second veteran from West Virginia received his letter on Wednesday the 19th late in the day and he called the sevice manager on Thursday the 20th.

The issue appears to have now involved at least 6 states (thru the VA Regional office- Service Managers that sent these letters).  We at Veterans Today are Dismayed that despite contact with the VA Headquarters in DC that VA Headquarters has yet to get in front in dealing with this issue. 

We are encouraging the VA Headquarters to move rapidly  to release a National Press Release from the VA Headquarters so those veterans that may not have phones or may not have an updated phone number on their contact information are made aware of this serious error by all means possible. 

We are concerned that these veterans who have chronic illnesses may take the letter they received as a death sentence and results could lead to a giving it up ie suicide over the weekend. 

We feel that the VA headquarters do not truly get it that these individual veterans are being harmed hour to hour by the delay of VA headquarters to get out there in front of this issue even on a weekend and get the message out to veterans, their family members, friends, and the public that an error was made and the VA gets it of how important it is to positively lead in this situation. 

The veteran’s organization, National Gulf War Veterans Resource Center, is understanding and leading because they dont want even one soldier to suffer needlessly and at the same time trying to get the message to the VA that they need to step up the sooner the better with full disclosure in order to save pain, anguish, or even life of each veteran that received this letter. We here at Veterans Today fully agree and add our voice that VA Headquarters respond immediately.


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