VCS Praises Recent Gulf War Illness Actions, Calls on VA to Do More

 

Dear Friends,

I was glad to have an opportunity to make a short verbal presentation to the Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) last week. 

Due to the meeting running a bit late, I shortened my comments. Here are my notes from what I wanted to say. 

To summarize, Veterans for Common Sense (VCS) is pleased that:

1. The RAC continues holding public meetings; and we strongly support the continuation of the RAC.

2. The CDMRP scientific research is realizing highly promising results, as shown by the new Congressionally Directed Medical Research Program-sponsored research by Dr. Beatrice Golomb shared with the RAC.  VCS strongly supports the CDMRP.

3. VA issued a new set of Gulf War reports.  VCS shared our suggestions to improve the Gulf War Veterans Information System (GWVIS) reports (now called the pre-9/11 phase of the war).  The RAC submitted a far more detailed list of suggested improvements, and VCS supports the RAC's proposal.  Please thank the RAC members for their diligence on this.  With robust, accurate, and timely reports, VA can develop and implement far better policies for our veterans.

In other matters, VCS still supports the urgent need to either rescind or amend Presidential Review Directive 5.  That's the 1998 White House policy that promotes the use of public relations ("risk communications") to deflect concerns about post-war illnesses.  In our view, science should be used first, not propaganda and spin.  The issue of ending or amending PRD5 is important because DoD and VA use the same public relations tactics to claim the toxic pollution from Iraq War burn pits and the radiation from three Japanese nuclear power plant meltdowns are harmless.

VCS also hopes the RAC will continue to do outreach, issuing more press releases and performing more public events so our veterans and the public are aware of the situation facing us. The RAC is the positive exception to VA's rule of perpetuating the myth the Gulf War was fast, cheap, and low-casualty.  The facts now show the Gulf War has lasted nearly 21 years (turning into the Iraq War in 2003).  The financial costs for research, healthcare and disability benefits are in the billions per year and expected to reach a total of $1 trillion over 40 years.  And, sadly, there are 250,000 ill from the 1991 phase of the war without treatments or answers.  Making the situation worse is the fact there are 650,000 more VA patients from the Iraq / Afghanistan war flooding into VA competing for resources.

We want to commend the RAC, as anything the RAC does is an improvement over VA's many years of inaction by most VA leaders.  VCS remains disappointed that VA does such a poor job informing Gulf War veterans about research, healthcare, and benefits. 

Thank you again for the opportunity to submit a longer statement for the record.  I hope you had a pleasant Fourth of July.

Best,

Paul

Paul Sullivan
Executive Director
Veterans for Common Sense
www.VeteransForCommonSense.org

VA Breaks Promises on Gulf War Veterans Data Report

 

VA officials Can Expect Agitated Veterans at November 1-2 RAC meetings in Boston if Completed Report is Not Public by then

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Gulf War veterans and many of the Institute of Medicine-reported 250,000 veterans suffering from Gulf War Illness (Gulf War Syndrome) have found encouragement at the new VA, with an internal Task Force and lengthy Task Force report and task list, a new internal Gulf War Steering Committee, and redone research proposal requests that specifically exclude stress or psychiatric studies and require a focus on treatments that would improve the health and lives of ill Gulf War veterans.

However, as noted by the VA’s Advisory Committee on Gulf War Veterans (ACGWV) chairman Charles Cragin, good decisions cannot be made without good data.   In its written final report, Cragin’s committee called for prompt restoration of Gulf War Veterans Information System (GWVIS) reports to provide that data.

The email chain shown below, submitted by longtime Gulf War veteran advocate Kirt Love, who requested and succeeded in seeing created the ACGWV, is regarding repeated promises, broken again and again by current VA officials regarding the GWVIS, which provide critically important data about Gulf War veterans.

On the positive side, it is good news to hear that the new report is a, “100+ page report contains a lot more statistics than the old GWVIS,” and, “The goal of the new report is to provide a more integrated and consistent set of data,” than the old GWVIS reports originally developed by legendary Gulf War veteran advocate and former VA data employee Paul Sullivan. 

On the negative side, however, “As such, it is taking [VA] a lot more time to validate and proof than anticipated,” says VA’s top data official.

The timeline of  VA’s newest set of broken promises, most made by VA Senior Executive Service official William Kane,  is as follows:

• February 2009:  As a member of VA’s now-completed Gulf War Veterans’ Advisory Committee, Love requested the new GWVIS report, which was expected by committee members, the RAC, and Gulf War veterans and advocates in a timely manner.
• February 25, 2010:  Love again requests an update, after a year has gone by.  Nearly a week later, a VA official responds to tell Love they plan on “publishing updated GWVIS reports by the end of June 2010.  We plan to publish quarterly after that.”
• August 11, 2010.  With the June 2010 deadline now long past, Love contacts VA again.  The response from the VA official:  We have a   “targeted completion date of the end of September.”
• September 24, 2010.  Love asks VA if the “end of September” date is still valid. The official responds saying, “It will probably be more like early October.”
• October 18, 2010.   With the “end of September” and “early October” deadlines now past, Love contacts VA yet again.    Three days later, a top VA data official responds, “I am expecting the remaining validation work and concurrence process to take approximately 2 weeks,” meaning early November at the earliest.
• October 21, 2010.  A justifiably frustrated Love publishes the email chain of more broken promises at Gulflink. 

It should be noted that on November 1-2, 2010, the Research Advisory Committee on Gulf War Veterans’ Illnesses will meet in Boston, Mass.  VA officials should expect justifiably pointed questions from highly agitated Gulf War veteran members and other advocates if the very long overdue GWVIS has not been finalized and publicly released before that time.

The full text of Kirt Love’s email chain is available below and from Love’s “gulflink” Yahoo group, at:  http://groups.yahoo.com/group/gulflink/message/11977

MORE INFORMATION: 

• GulfLINK (DoD):  http://www.gulflink.osd.mil/
• GulfBLINK.org (Advocacy Organization):  http://www.gulflink.org/ 
• Desert Storm Battle Registry:  http://www.gulflink.org/register.htm

----------------------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Thursday, February 25, 2010 11:03 AM
To: Kane, William (SES), VBAVACO
Subject: Fw: February 2008 vs August 2008 GWVIS report totals

Mr. Kane
My name is Kirt P. Love, disabled veteran. Founder and member
of the VA ACGWV committee that concluded in September 2009.
Short and sweet, I sent a email into VBA requesting a answer about
discrepancies in the GWVIS report released Feb 2009. The numbers
compared flaws from the Feb 2008 report to the Aug 2008 report.
In May I pushed harder and Thomas Kniffen got involved. There
was a subcommittee meeting of the ACGWV with VBA on June
30th to discuss the state of report errors. I attended.
Its been 8 months since that meeting and one year since I sent
the original email into VA on this topic. I understand that this has
been in debate for some time over coding issues at VBA.
Will there be a timeline for the updated reports being released?
Will the 2009 report coincide with this?
Will the VBA website post this information with a explanation
of what transpired?
http://www.vba.va.gov/REPORTS/gwvis/index.asp
I imagine some of this will be shared with Jim Binns at the RAC
meeting next week. As I share information with Jim on what took
place with my committee.
Thank you for your time and attention.
                                                Sincerely
                                                Kirt P. Love
                                                Director, DSBR
                                                        former member of the ACGWV committee

 

----------------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Tuesday, March 02, 2010 11:39 AM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

    In case you were not present at the 2 Mar RACGWVI meeting, we committed to a goal of publishing updated GWVIS reports by the end of June 2010.  We plan to publish quarterly after that.  As before, we'll post the reports on our website.  Thanks for your interest in the matter.

-------------------

From: Kirt Love <kirt@gulflink.org>
To: Kane, William (SES), VBAVACO
Sent: Wed Aug 11 11:24:27 2010
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Mr. William
It is August 11th 2010, it has been 14 months since
the ACGWV met with VBA about the GWVIS report
issues.
The March RAC meeting you promised a June delivery
date for the updated GWVIS. It is now mid August
and not even a explanation.
Is there a publication date?
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR
                                                Former member VA ACGWV committee

--------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Wednesday, August 11, 2010 11:25 AM
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Thanks for your follow-up note.

It was decided that rather than resuming publication of the GWVIS report, a new report would be generated by the Office of Policy and Planning (OPP). The goal of the new report is to provide a more integrated and consistent set of data.

We are currently working with OPP and other VA offices to generate the report with a targeted completion date of the end of September.

Thanks again for your interest.

---------

 

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Friday, September 24, 2010 1:19 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Is this still on for the end of September?
                                Sincerely
                                Kirt P. Love
                                Director, DSBR

---------------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Friday, September 24, 2010 1:15 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

    It will probably be more like early October.  The draft report was prepared and is being reviewed internally with comments due on 9/28.  Depending on the nature of the comments and the time it takes for corrections, the release could be later than 30 September.

-------------------------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Monday, October 18, 2010 12:48 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Its now mid October, is this about to go out?
                                        Sincerely
                                        Kirt P. Love
                                        Director, DSBR

 

----------------------

----- Original Message -----
From: Tran, Dat (SES) VACO
To: kirt@gulflink.org
Sent: Thursday, October 21, 2010 4:29 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

Kirt:
VA analysts are still going through the draft report to validate all the statistics and proof all the narratives. This 100+ page report contains a lot more statistics than the old GWVIS. As such, it is taking us a lot more time to validate and proof than anticipated.
Once the validation is completed, we will circulate the report internally for final review and concurrence. I am expecting the remaining validation work and concurrence process to take approximately 2 weeks. Please feel free to contact me if you have any questions.  Hope all is well with you. As soon as the report is concurred internally for release, I’ll let you know.
Best,
Dat

 

------------------------------

---------- Forwarded message ----------
From: Kirt Love <kirt@gulflink.org>
Date: Thu, Oct 21, 2010 at 10:05 PM
Subject: Fw: February 2008 vs August 2008 GWVIS report totals - new GWVIS report
To: Gulflink <gulflink@yahoogroups.com>
Cc: Jim Binns, rac@bu.edu, ANTHONY HARDIE,

Dear Readers
See what I meant. VA knows that to make this go
away they need this report to hit in November. Congress
is out for the holiday season and nothing gets going
again until March 2011. They want this to go out silent
and be ignored as long as possible. The last year
is the hint based on there past track record.
I told you all they would continue to stall. I told you
that they wouldnt make the September, and then
October deadlines.
There is even conflicting internal information on the
status of this report. As another department person
had said this was already in concurrence. Now Dat
is saying its back in review.
I have little faith the report will have teeth. But, it is
also a reflection on Gingrich and his task force much
less the bad lip my committee gave it. Just have
to see, as the word "Narratives" has gotten my
attention. That usually means some at least some
investigation work requiring oration.
Well, you wont see this anywhere else but "Gulflink".
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR

VA Releases Gulf War Veterans’ Illnesses Task Force Report

 

In August 2009, VA Secretary Eric Shinseki directed a comprehensive review of the Department’s approach and practices in meeting the needs of Veterans of the 1990 – 1991 Gulf War.

The September 29, 2010 final report on that review is now available.

-----------------------

 

Technorati Tags: Gulf War Illness,Gulf War Syndrome,Gulf War Task Force,VA Gulf War,91outcomes.com,91outcomes

APNewsBreak: VA to reopen Gulf War vets' files

By KIMBERLY HEFLING, The Associated Press

(WASHINGTON – AP) - The Veterans Affairs Department will re-examine the disability claims of what could be thousands of Gulf War veterans suffering from ailments they blame on their war service, the first step toward potentially compensating them nearly two decades after the war ended.

VA Secretary Eric Shinseki said the decision is part of a "fresh, bold look" his department is taking to help veterans who have what's commonly called "Gulf War illness" and have long felt the government did little to help them. The VA says it also plans to improve training for medical staff who work with Gulf War vets, to make sure they do not simply tell vets that their symptoms are imaginary - as has happened to many over the years.

"I'm hoping they'll be enthused by the fact that this ... challenges all the assumptions that have been there for 20 years," Shinseki told The Associated Press in an exclusive interview.

The changes reflect a significant shift in how the VA may ultimately care for some 700,000 veterans who served in the Gulf War. It also could change how the department handles war-related illness suffered by future veterans, as Shinseki said he wants standards put in place that don't leave veterans waiting decades for answers to what ails them.

The decision comes four months after Shinseki opened the door for as many as 200,000 Vietnam veterans to receive service-related compensation for three illnesses stemming from exposure to the Agent Orange herbicide.

About 175,000 to 210,000 Gulf War veterans have come down with a pattern of symptoms that include rashes, joint and muscle pain, sleep issues and gastrointestinal problems, according to a 2008 congressionally mandated committee that based the estimate on earlier studies.

But what exactly caused the symptoms has long been unanswered. Independent scientists have pointed to pesticide and pyridostigmine bromide pills, given to protect troops from nerve agents, as probable culprits. The 2008 report noted that since 1994, $340 million has been spent on government research into the illness, but little has focused on treatments.

Last week, Shinseki and Sen. Jay Rockefeller, D-W.Va., a member of the Senate Veterans' Affairs committee, met privately in Charleston, W.Va., with several Gulf War veterans. In an interview after the meeting, Rockefeller told the AP that Shinseki's background as a former Army chief of staff made the changes possible. He said either the military has been reluctant over the years to release paperwork related to the war or kept poor records about exposures in the war zone, which made it harder for the veterans to prove they needed help.

"The paperwork isn't very accurate, but the pain is very real," Rockefeller said.

Shinseki has publicly wondered why today there are still so many unanswered questions about Gulf War illness, as stricken veterans' conditions have only worsened with age.

Last fall, he appointed a task force led by his chief of staff, John Gingrich, a retired Army colonel who commanded a field artillery battalion in the 1991 war, to review benefits and care for Gulf War veterans. The changes stem from the task force's work.

Gingrich said in an interview that he feels a personal stake because some of his own men who were healthy during the war are dealing with these health problems. Gingrich said the VA isn't giving a new benefit to Gulf War veterans, just making sure the claims they submitted were done correctly.

"We're talking about a culture change, that we don't have a single clinician or benefits person saying 'you really don't have Gulf War illness, this is only imaginary' or 'you're really not sick,'" Gingrich said.

A law enacted in 1994 allows the VA to pay compensation to Gulf War veterans with certain chronic disabilities from illnesses the VA could not diagnosis. More than 3,400 Gulf War have qualified for benefits under this category, according to the VA.

The VA says it plans to review how regulations were written to ensure the veterans received the compensation they were entitled to under the law. The VA would then give veterans the opportunity to have a rejected claim reconsidered.

The VA doesn't have an estimate of the number of veterans who may be affected, but it could be in the thousands.

Of those who deployed in the Gulf War, 300,000 submitted claims, according to the VA. About 14 percent were rejected, while the rest received compensation for at least one condition.

Shinseki's 'State of VA' Address Includes Gulf War Illness

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com - October 14, 2009) - Today's "State of VA" address delivered by U.S. Department of Veterans Affairs (VA) Secretary Eric "Ric" Shinseki included key comments for Gulf War veterans.  

The speech, presented as testimony before Congress, was wide ranging, pledging transparency, openness, and doing right by veterans. 

It also included key comments related to Gulf War Illness, including implying that the claims process will improve for the 175,000 to 210,000 veterans suffering from Gulf War Illness.  Shinseki also gave a warning about what will happen to current service members if the lessons of the Vietnam War and the 1991 Gulf War are not learned:

"A transformed VA will be a high-performing 21st century department, a different organization from the one that exists today.  Beyond the next five years, we're looking for new ways of thinking and acting. 

"We are asking why, 40 years after Agent Orange was last used in Vietnam, this Secretary had to adjudicate claims for service-connected disabilities that have now been determined presumptive. 

"And why, 20 years after Desert Storm, we are still debating the debilitating effects of whatever causes Gulf War Illness.

"If we do not stay attuned to the health needs of our returning veterans, 20 or 40 years from now, some future Secretary could be adjudicating presumptive disabilities from our ongoing conflicts. 

"We must do better, and we will."

Shinseki's speech noted new presumptive conditions for Agent Orange, bringing the total to 15 according to a Stars and Stripes article. 

To date, VA has only named three conditions related to Gulf War illness as presumptive, including fibromyalgia (FMS), chronic fatigue syndrome (CFS/ME), and irritable bowel syndrome (IBS), all thought to be closely related to Gulf War Illness (GWI).  Veterans diagnosed with both FMS and CFS/ME are compensated as if the two were a single condition.  

Gulf War veterans can also be compensated for an undiagnosed multi-symptom illness described by signs and symptoms noted by a physician.  However, according to the most recent VA data, less than 4,000 Gulf War veterans have been successful in gaining service connection for undiagnosed illness.

For all veterans, including those with service in the 1991 Gulf War, Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease is a presumptive condition for any period of military service, as is Multiple Sclerosis (MS) if the disease manifests no later than seven years following military service. 

Despite studies showing elevated rates of brain and testicular cancer among Gulf war veterans and anecdotal reports of high rates of sleep apnea, chronic sinusitis, and respiratory and dermatological (skin) diseases and disorders, VA has not yet identified any of these as presumptive conditions for Gulf War veterans. 

The full text of Shinseki's speech and opening comments by House Veterans Affairs Committee Chair, Rep. Bob Filner (D-Calif.), are available from the U.S. House of Representatives Committee on Veterans Affairs.

ANCHORAGE DAILY NEWS: Don't Stop--VA needs to press research on Gulf War illness

Written by the Editors of the Anchorage Daily News 

(Anchorage, Alaska - October 10, 2009) - Veterans of the 1990-91 war in Iraq continue to struggle with the government for proper attention to the mysterious illnesses known as "Gulf War syndrome." Years of research into those illnesses has linked many of them to the use of pesticides and a nerve-gas antidote used by U.S. forces during that war. That research, while not absolutely conclusive, gives the lie to what the government had been telling vets who suffer from brain damage, gastrointestinal diseases, fatigue, memory loss, chronic diarrhea, joint pain and persistent headaches.

Post-traumatic stress, the feds said. A psychiatric condition.

No way, says the lead researcher into Gulf War illness at the University of Texas Southwestern Medical Center.

"Now we know it's a real disease caused by chemical exposure," epidemiologist Robert Haley told The Dallas Morning News.

However, the Veterans Administration has canceled the Texas medical center's $75 million contract to study the disease and figure out effective treatment. The department said that Haley's research has violated many research protocols; critics have questioned his methodology.

We can't judge Dr. Haley's contract performance. But his work, and other confirming research, makes clear that this work needs to continue. If not with Dr. Haley's group, then with someone else.

Haley's conclusion, that Gulf War illness is "a real disease" and not a manifestation of stress, received powerful confirmation in 2008. That's when a congressionally sanctioned group of scientists, medical experts and military vets found Gulf War illness was fundamentally different from stress-related syndromes.

The Research Advisory Committee on Gulf War Veterans Illnesses pulled together work of scientific and government investigations and found the evidence "leaves no question that Gulf War illness is a real condition."

The Veterans Administration continues to resist that conclusion.

At stake is what could be billions of dollars in veterans' disability benefits.

Much more important, what's at stake is the health of up to one in four Gulf War vets who may be suffering from chemical exposures inflicted by their own forces with the best of intentions.

The VA has a troubling track record in these matters. It took decades for the government to acknowledge the terrible effects of Agent Orange and other toxic defoliants used in Vietnam.

And the official response to the Gulf War illness was first to blame it on stress. Then there was foot-dragging.

No more delays -- and let's not lose whatever knowledge Dr. Haley and his colleagues have gained.

The nation owes Gulf War vets its best effort to zero in on causes and cures. Anything less is betrayal.

BOTTOM LINE: Evidence is strong that Gulf War illness is real. Let's stand by our vets and find out how to treat it.

=====================
Editor's Note:  the following editorial, also by the Anchorage Daily News, rings as true now as it did nearly a year ago when it was first published.


Gulf War illness: Government finally admits vets suffer from a real condition

Written by the Editors of the Anchorage Daily News

(Anchorage, Alaska - November 18, 2008) - The official U.S. government response to claims of Gulf War illness has run from skepticism to outright denial.

This week's report by the Research Advisory Committee on Gulf War Veterans' Illness should put an end to doubt. Contrary to government claims, debilitating symptoms are not likely from battlefield stress and other psychological factors. The council, made up of scientists and veterans and working on marching orders from Congress, lays the blame on exposure to pesticides and the PB (pyridostigmine bromide) pills taken to thwart the effects of nerve gas.

With one in four of the 697,000 Gulf War vets reporting some level of the same symptoms, the lights should have gone on a long time ago in the departments of Defense and Veterans Affairs.

One in four -- and yet these 172,000 veterans have had to deal with a government that simply didn't believe them.

Enough. The council concludes that Gulf War illness is real. That's bitter confirmation to the veterans who have suffered from what the report calls a "complex of multiple concurrent symptoms" that "typically includes persistent memory and concentration problems, chronic headaches, widespread pain, gastrointestinal problems, and other chronic abnormalities."

So now veterans have rigorous support for what they have contended all along -- it's not just in our heads, we're not making it up. We're sick.

The report should help clear the way for an all-out effort to find treatment and a cure. If the government drags its feet now, it'll be doing a grim impression of the tobacco industry in the face of the Surgeon General's reports.

The council, noting that research funds for Gulf War illness have declined in recent years, recommends a boost of $60 million in research toward effective treatment and cure. That's a good start.

Clearly, Gulf War illness was inflicted on our troops unintentionally. The military was trying to protect them from weapons that then-Iraqi leader Saddam Hussein was known to possess and willing to use.

Just as clearly, the United States owes Gulf War veterans whatever treatment of that illness is available now, along with serious research into finding a cure, or better treatment of the various symptoms.

Thousands of our Gulf War vets are sick. Let's help them.

BOTTOM LINE: Gulf War illness is real, and few vets who suffer the disease are getting better. It's past time for serious work on a cure. 
=========



Is Change Coming?  

VA Advisory Committee on Gulf War Veterans to Meet in D.C. Sep. 15-16

[Federal Register: August 31, 2009 (Volume 74, Number 167)]
[Notices] [Page 44901]

From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr31au09-136]
============================================
DEPARTMENT OF VETERANS AFFAIRS

Advisory Committee on Gulf War Veterans; Notice of Meeting

The Department of Veterans Affairs (VA) gives notice under Public Law 92-463 (Federal Advisory Committee Act) that the Advisory Committee on Gulf War Veterans will meet on September 16-17, 2009, in Room 819 at the Lafayette Building, 811 Vermont Avenue, NW., Washington, DC, from 9 a.m. to 4 p.m. each day. The meeting is open to the public.

The purpose of the Committee is to provide advice and recommendations to the Secretary of Veterans Affairs on issues that are unique to Veterans who served in the Southwest Asia theater of operations during 1990-1991 period of the Gulf War.

The principal purpose of the meeting is to finalize the Committee's report to the Secretary of Veterans Affairs. A public comment period will take place on September 16 from 9:15 a.m.-9:45 a.m.

Individuals wishing to speak must register not later than September 11, 2009 by contacting Lelia Jackson and by submitting 1-2 page summaries of their comments for inclusion in the official record.

Public comments will be limited to five minutes each. A sign-in sheet will be available each day. Members of the public may also submit written statements for the Committee's review to the Advisory Committee on Gulf War Veterans, Department of Veterans Affairs, 810 Vermont Avenue, NW., Washington, DC 20420.

Interested parties may also listen in by teleconferencing into the meeting. The toll-free teleconference line will be open daily from 9 a.m. until 4 p.m. (Eastern Standard Time). To register for the teleconference, contact Lelia Jackson at (202) 461-5758 or via e-mail at lelia.jackson@va.gov.

Any member of the public seeking additional information should
contact Laura O'Shea, Designated Federal Officer, at (202) 461-5765.

Dated: August 26, 2009.
By Direction of the Secretary.

E. Philip Riggin,
Committee Management Officer.
[FR Doc. E9-20979 Filed 8-28-09; 8:45 am]

CNN: VA to Apologize for Mistaken ALS Disease Notifications

Written by Ashley Hayes, CNN

(CNN) -- The Department of Veterans Affairs said Wednesday it will apologize to veterans who were mistakenly told they'd been diagnosed with a fatal neurological condition.

Letters were sent last week to 1,864 veterans and survivors, the VA said in a written statement. They were supposed to be sent to veterans with ALS -- also known as Lou Gehrig's disease -- to keep them apprised of expanding benefits eligibility.

"According to the records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS)," said the letter, according to the National Gulf War Resource Center. "This letter tells you about VA disability compensation benefits that may be available to you."

But some who received the letters, like Brent Casey, do not have ALS. Casey, a disabled Army veteran from the first Gulf War, told CNN that when he received the letter, he was "just completely beside myself. Just floored. Went into a complete and total meltdown. I couldn't speak, couldn't -- I guess I was, truthfully, speechless."

After hearing from veterans who received the letter but do not have ALS, the VA immediately began reviewing individual claims files for all the recipients to determine who received the letter by mistake, agency spokeswoman Katie Roberts said in the statement. "VA employees are personally contacting these individuals to ensure they understand the letter should not be confused with a medical diagnosis of ALS, explain why they mistakenly received the letter and express VA's sincere apologies for the distress caused by this unfortunate and regrettable error."

"It's not right for it to happen this way," Casey said. "Regardless if it was the case that I was diagnosed with ALS, that would be the worst possible way for an organization to let an individual know."

Upon receiving the letter, some veterans sought a second opinion outside the VA, according to veterans' service organizations, paying for doctors' consultations out of their own pockets. The VA said it will reimburse those veterans for the costs.

In addition, the VA said it is reviewing its notification process to make sure a similar error doesn't happen again.

The AmVets service organization is "encouraged" by the VA's response to the situation, and pleased to see they caught the error, said spokesman Ryan Gallucci.

================================
According to the VA:

STATEMENT:

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.

WRAL-TV: N.C. Gulf War Veteran Among those who Receive VA's Errant ALS Letter

Written by Beau Minnick, WRAL-TV, Raleigh-Durham-Fayetteville, N.C

Web Editor: Kathy Hanrahan

(Henderson, N.C. - August 26, 2009) — Former Army Sgt. Samuel Hargrove, of Henderson, remembers the feeling he got when he opened a letter on Sunday from The U.S. Department of Veterans Affairs. It was a notification that he had been diagnosed with Lou Gehrig's disease.

“It really felt like the weight of the world had fallen upon my soul,” Hargrove said. “I started crying and wondering why no one had ever told this to me before.”

Like some other Gulf War veterans, Hargrove, 42, has some neurological problems. He suffers from chronic fatigue, fibromyalgia and narcolepsy.

After talking with other veterans in a resource center and online, Hargrove discovered he was among a group of veterans who received the letters erroneously.

With all the other symptoms he has, now Hargrove questions whether he has ALS, too. He wants the VA to pay for a test.

“I don’t want to see anyone else go through this kind of suffering from a mistake again,” Hargrove said.

VA spokeswoman Katie Roberts said the agency will individually apologize to those veterans who received the letters in error.

The veterans also will receive an explanation about how "this unfortunate and regrettable error" occurred and reassurances that the letters do not confirm diagnoses of the fatal neurological disease, she said. Roberts did not say whether the agency has determined how the error occurred.

VA employees were still thumbing through case files, trying to determine exactly how many veterans mistakenly received letters intended to inform sufferers of ALS, or Lou Gehrig's disease, of benefits available to them or surviving spouses and children.

"We understand we made a mistake," Roberts said. "We had every good intention.”

Roberts said the VA mailed more than 1,800 letters last week and has been notified by fewer than 10 veterans who received the letters in error. However, a Gulf War veterans group that provides information, support and referrals about illnesses to military members estimates at least 1,200 veterans received the letters by mistake.

Denise Nichols, vice president of the National Gulf War Resource Center, said panicked veterans in at least a dozen states have contacted her group.

ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles. It is usually fatal within five years.

Veterans like Hargrove and former Air Force reservist Gale Reid in Montgomery, Ala., were initially suspicious of the letters, but went through the pain of not knowing whether they had ALS.

Reid said she incurred about $3,000 worth of medical expenses securing a second opinion from a civilian doctor. Reid hopes the VA will pay for the tests, but Roberts said she had to check on any reimbursements.

Jim Bunker, president of the veterans group, said someone at the VA told him the mistake was caused by a coding error in which veterans with undiagnosed neurological disorders were inadvertently assigned the code for ALS. The VA uses more than 8,000 codes for various diseases and illnesses, he said.

WATCH VIDEO
Local vet gets errant notice of ALS

USA Today: Health scare sent to 1,800 veterans

Written by William M. Welch, USA TODAY
Contributing: Alan Gomez in McLean, Va.

(August 24, 2009) - More than 1,800 Gulf War veterans were sent letters from the Veterans Administration this month informing them that they had Lou Gehrig's disease — a fatal neurological disease.

But at least some of the letters — and the diagnoses — were a mistake.

Jim Bunker, president of the National Gulf War Resource Center, said VA officials told him the letters dated Aug. 12 were the result of a computer coding error that mistakenly labeled the veterans with amyotrophic lateral sclerosis, or ALS.

Katie Roberts, a spokeswoman for the VA, said the letters were simply to inform veterans with ALS of disability compensation available to them and were not intended to deliver a medical diagnosis of ALS.

Roberts said the administration has since been contacted by a "small number" of people who did not believe they had ALS. Veterans Administration officials are now reviewing all the cases, Roberts said.

For those who were sent the letters in error, Roberts said, VA officials are personally contacting the recipients to "express VA's sincere apologies for the distress caused by this unfortunate and regrettable error."

Bunker said the letters informed recipients that the ALS diagnosis made them 100% disabled, meaning they were entitled to about $2,700 a month, with additional money for children and spouses.

Although some may view that sought-after 100% designation as a welcome benefit, Bunker said, being diagnosed with a disease that generally kills people within five years far overshadowed any monetary gains.

"The vast majority saw it as bad," he said.

Brent Casey served as an Army medic in the 1991 Gulf War and suffers from post-traumatic stress disorder and chronic fatigue syndrome.

He has already been classified 100% disabled by the VA, but is working toward a master's degree in business in Louisville. He also volunteers at the local VA.

When Casey's mother called and read him the letter, the 41-year-old thought he had just been read a "death sentence."

"By volunteering at the VA, I've learned a lot of these illnesses. So I knew firsthand what that meant for me," Casey said. "I just had a total meltdown."

Casey learned that the letter was a mistake after making calls to the VA. But he now worries about the veterans who have received the letter and have yet to be contacted about the mistake.

"My concern is, what about the guy who's been on vacation, and he comes home to find this letter this evening?" Casey said. "We need to get the word out to these guys."

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

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

Obama acknowledges Gulf War illness, says fixing VA could take "years"

Written by William H. McMichael - Army Times Staff writer

(ArmyTimes.com - Friday Aug 14, 2009 11:59:23 EDT) - President Barack Obama not only wants to improve the treatment of America’s veterans, but also to reach out to homeless veterans, as well as those who have turned their backs on — or are unaware of — the benefits they’ve earned.

“What we’re trying to do is just break down the hurdles that exist between veterans and VA,” Obama told Military Times and a small group of other defense reporters in an Aug. 4 meeting in the White House Roosevelt Room.

But lowering one of those hurdles — creating what Obama called “a VA that is consumer-friendly, that is oriented not towards keeping people out but bringing people in” — will not happen quickly, he said.

“It’s fair to say that this is a multiyear project,” Obama said. “We are going to be working vigilantly. We’re going to keep on pushing. We’re going to keep on prodding to make sure that both VA and DoD understand these very human issues are dealt with in the most thoughtful and effective way as possible.”

As evidence of that effort, Obama and Veterans Affairs Secretary Eric Shinseki touted a boost in VA funding, an increase of 4,000 claims adjusters since January 2007, a total of 18,000 mental health providers, a national suicide hotline, technological improvements in the benefits claims process, the ongoing effort to create electronic medical records that VA and the Pentagon can easily share and a more proactive and helpful attitude at both agencies.

But while hundreds of thousands of vets seek VA care and assistance, Obama said hundreds of thousands more need help but, for a variety of reasons, haven’t sought it.

Shinseki said one thing Obama has asked him to focus on “is homeless vets — 131,000 sleeping on our streets tonight. It’s about jobs; it’s about education.”

It’s also about changing the way VA views its mission, Obama said.

“I think a lot of the reason people fall through the cracks is historically sometimes VA has sat back and waited for people to come to them,” Obama said. “And part of what [Shinseki] has been doing is to make sure that VA is reaching out to them.”

Mental health problems have been overwhelming VA, however, and caregiver demand could outstrip supply despite the recent hires. According to a 2008 Rand Corp. study, an estimated 31 percent of returning war veterans suffer from mental health issues. Only about half of those who need treatment seek it, and only a bit more than half of those who seek treatment get “minimally adequate care,” Rand concluded.

Tackling that problem calls for a multipronged approach, Obama said.

One of the best ways of reducing incidents of PTSD, he said, “is to reduce the amount of time in theater without a break.” To that end, the administration is seeking ways to increase “dwell time” between deployments, has increased the size of the Army and Marine Corps, and is ending the Army’s stop-loss program, through which soldiers’ duty can be involuntarily extended.

Obama also wants better screening of returning troops and for commanders to keep working on reducing the stigma some feel over reporting such problems.

All of this will cost money; his administration has boosted VA’s budget to the tune of $25 billion over the next five fiscal years.

While expenditures won’t solve all the problems, Obama said, “money helps,” particularly in providing enough mental health care — to include ensuring that services for female veterans are available at all VA health centers.

Another potential VA health care challenge in coming years may be the rising tide of respiratory illnesses and blood cancers resulting from exposure to smoke from open-air burn pits used for waste disposal in war zones.

Obama said he is familiar with the issue. Acknowledging the long denials of past administrations over concerns such as atomic radiation tests, Agent Orange exposure in Vietnam and Gulf War illness, he said he wants an objective assessment of the burn-pit problem — the “best science possible.”

“I don’t want us hiding the ball if there’s a real problem there,” Obama said. “I am absolutely convinced that our commanders in theater are doing everything they can to protect their men and women. The key is to understand that our scientific knowledge and our medical knowledge may evolve. And if we find out that something’s wrong, even … it might not have been anyone’s fault … nobody is served by denial or sweeping things under the rug.”