Thursday Evening, August 27, 2990 - Tonight's update about the 1,800 letters VA sent to veterans regarding ALS benefits contains two parts.  The first part is a new VA statement posted this evening to VA's home page, www.va.gov.  The second part is an e-mail sent by Veterans for Common Sense to VA on Tuesday, August 25, 2009.  VCS thanks VA for their prompt action to stop sending letters, to investigate the causes of the problem, to notify and apologize to veterans, and to make sure this doesn't happen again.

VA Statement on amyotrophic lateral sclerosis (ALS):

Last September the Secretary of Veterans Affairs made amyotrophic lateral sclerosis (ALS) a presumptively compensable illness for all Veterans with 90 days or more of continuous active service in the military. As a result, the Department of Veterans Affairs (VA) can now pay disability compensation to Veterans with ALS. Their survivors are also eligible for VA benefits.

In an effort to provide Veterans this new and much-needed support, VA sent notification letters to Veterans with ALS advising them of their potential eligibility for disability compensation benefits. On August 13, 2009, VA sent outreach letters to 1,864 Veterans and survivors across the country. Unfortunately, VA made a coding error and a number of Veterans who should not have received this letter did. The Department is reviewing individual claims files for all the recipients of this letter to identify those who received it by mistake.

VA employees are calling Veterans and survivors to ensure that they understand the purpose of the letter, explain why they mistakenly received the letter, and express VA's sincere apologies for the distress caused by this unfortunate and regrettable error.

Q + A:

Q: How many Veterans have been affected?
A: Approximately one third of the letters VA sent were miscoded.

Q: Will VA be issuing a formal apology?
A: Yes, the Department is calling all affected Veterans and will also be issuing them a formal letter of apology.

Q: Why did Veterans who do not have ALS get letters?
A: VA used data and information from its data base to identify Veterans diagnosed with ALS or who had filed a claim for ALS, but were not currently receiving disability compensation benefits for the condition. However, as a result of problems in the codes VA used to identify these Veterans, VA sent the letter to some Veterans who do not have ALS.

Q: What is VA doing to correct the mistake?
A: We are working to identify the specific problems that caused the misidentification of Veterans records. We will ensure any future data extracts for similar outreach purposes are properly formulated and independently validated to prevent these types of problems in the future.

Q: Will Veterans be reimbursed for medical expenses incurred?
A: VA will reimburse Veterans who incurred expenses for medical evaluations conducted as a result of receiving an erroneous notification.

Q: What will VA do to prevent this from happening again?
A: As a result of this incident, VA is creating a more rigorous process that includes thorough and careful screening of the data, comprehensive review and approval process that will include involvement from our stakeholders before release of notifications letters.

** August 25, 2009, VCS Letter to VA **

Dear VA,

Thanks for sending VA’s statement about ALS to VCS last night.  We distributed it and we posted it. 

We appreciate VA’s sincere apology and VA’s quick response, especially over a weekend, and especially since this apparently may have involved a highly technical computer programming problem that appears to have led to VA to improperly inform some veterans they have a life-ending condition, ALS.

Communication and feedback are important, and we want to continue this process so this matter is fully resolved, and so we don’t repeat this mistake.

VCS still believes VA’s letter about ALS was sent to veterans with the best of intentions to advise veterans about new, expanded benefits.  We understand the changes to VA regulations in 2008, and that VBA sent out a request to Regional Offices about notifying veterans about the new ALS benefits.  We would like to review a copy of VBA’s ALS Fast Letter 08-46, distributed to VBA Regional Offices in late 2008.  Please forward a copy to VCS.

VCS is a leading stakeholder on this specific issue.  On a national policy level, these expanded benefits for ALS were sought for our Gulf War veterans while I was executive director of the NGWRC in the 1990s.  The ALS benefits were again sought by VCS as recently as last year.  On a personal level, I have lost some friends to ALS.  Thus, the goal of getting this right is important, regardless of the size of the impacted population.

While VA’s statement is appreciated, we still kindly request that VA work with VCS and others to address these significant unresolved concerns, please:

1. Temporary Cease Fire.  Did VA stop sending the letters?  We hope VA no longer sends letters to veterans who are not diagnosed with ALS.  We hope the letter content tone is improved substantially so it is veteran-friendly, and veteran-focused.  While reviewing veterans’ claims files, as mentioned in VA’s statement, remains important, we hope VA also reviews veterans’ VHA medical records. Once these issues are addressed, then VCS believes VA should resume contacting veterans about the new, expanded ALS disability compensation benefits.  One of our primary goals is for our veterans to aware of and to promptly receive the benefits they are entitled to.   We note that VA took about 11 months to mail some of the letters about ALS.  VA may have been able to send the letters much sooner after the September 2008 announcement of new benefits.   We hope future VA outreach letters sent to veterans are distributed more expeditiously after Congress changes a law or VA changes a regulation.  In a related matter, VA has still not officially notified all of the veterans with denied claims for undiagnosed conditions, FMS, IBS, and CFS about the 2001 legislative expansion of disability benefits to include FMS, IBS, and CFS as linked with deployment to the 1991 war.

2. Cause of Problem.  We need to know what actually happened so that veterans who were not diagnosed with ALS were sent letters telling them they were diagnosed with ALS.  Of the approximately 1,800 letters VA sent, what is the actual count of improper letters where veterans were not diagnosed with ALS?   We appreciate knowing how many veterans contacted VA.  However, how many veterans were telephoned by VA since VCS contacted VA Central Office?  Have all veterans who were sent improper letters been contacted by VA by phone so each veteran confirms to VA that the veteran understands VA’s letter was sent in error?   Is VBA matching their computerized records with VHA systems and records to determine an accurate count of the veteran population diagnosed with ALS?

3. Reimbursing Veterans.  Will VA reimburse the veterans who received errant letters who then subsequently sought medical exams in a reasonable effort to confirm VA’s ALS diagnosis?  In our view, VA is liable for not taking due diligence to make sure the list was accurate and the letter was accurately written.  Therefore, VA should cover reasonable expenses until such time as all non-ALS veterans have been contacted and they confirmed they know VA’s letter to them was sent in error.

4. Moving Forward to Reassure Veterans About the Future.  Will VA initiate steps to make sure future data searches are done more accurately in order to prevent a repeat of this incident?  Will VA take steps to make sure similar letters sent to veterans and surviving beneficiaries are written with far more sensitivity?   Why did it take a call from a veteran advocacy organization to VA Central Office to alert VA leaders about a serious problem at several local VBA Regional Offices?  In our view, when the first VBA RO received the first call about an errant letter involving a life-and-death issue, then there should have been a process where VBA immediately notifies VA Central Office.  VCS understands VBA Regional Offices did not contact VA Central Office, and this concerns us greatly.  Before VA’s letters were sent, there should have been an internal VA review process (with VHA, VBA, and OGC) to make sure the proper target population was identified and that the letter had the proper tone.

In our view, this incident could and should have been prevented.  Our goal is to work with you to make that happen.  Our overall goal is to make sure our veterans are aware of and promptly receive their disability compensation benefits, especially after new scientific findings, laws, and regulations expand VA’s authority to provide assistance.

Sincerely, Paul.

Paul Sullivan
Executive Director
Veterans for Common Sense