Sunday, June 30, 2013

UPLOADED DOCUMENTS: VA Retaliates, Guts Gulf War Illness Panel (RAC)

The following compilation of linked documents are related to the VA's sweeping, retaliatory changes to the Congressionally chartered Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses - for telling the truth and doing their jobs.

 -A.H.

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Key Documents: VA Retaliation Against Gulf War Illness Panel

Letter from RAC Chair Jim Binns to VA Secretary Eric Shinseki and Interim Chief of Staff Jose Riojas, April 29, 2013, identifying serious ongoing issues at VA related to Gulf War research.  

 Letter from VA Interim Chief of Staff Jose Riojas to RAC Chair Jim Binns, May 16, 2013.  Outlines sweeping changes to the RAC.  

 Newly revised RAC Charter gutting the RAC signed by VA Secretary Eric Shinseki, May 17, 2013.

 Letter from RAC Chair Jim Binns to VA Interim Chief of Staff Jose Riojas, May 29, 2013.  An analysis of serious problems with the sweeping changes to the RAC and RAC's charter.  

 Letter from all the Gulf War veteran members of the RAC (Anthony Hardie, Marguerite Knox, Joel Graves) to VA Secretary Eric Shinseki, June 10, 2013.  Includes discussion of serious problems with sweeping changes to RAC and RAC charter, with context on Gulf War veterans' history with VA.  

 RAC report, June 18, 2013.  "At its last in-person meeting on June 19, 2012, the Committee adopted detailed findings and recommendations and concluded that the Department of Veterans Affairs has failed to formulate and execute an effective Gulf War Illness research program. The majority of these findings remain unaddressed in whole or in part, including the most serious, which reflect actions by elements of VA and DoD staff seeking to roll back the clock to the 1990’s and fundamentally reverse the progress that has been made in understanding and addressing Gulf War illness. The recent change to the charter of the Committee, eliminating its oversight function and independence, is the latest and most egregious example of these staff actions. At the time of a senior leadership change, staff has persuaded VA leadership to endorse these actions. The Committee makes the following recommendations to the Secretary...."

RAC Charters

VA Press Release, Jan. 23, 2002, “VA Creates Gulf War Advisory Committee”: regarding creation of the RAC.

 Speech to the RAC by VA Dep. Sec. Leo Mackay, Oct. 28, 2002.


National Media Coverage of VA Retaliation Against Gulf War Illness Panel

Listed in reverse chronological order (newest first)

 (Kelley Vlahos), June 25, 2013: "Gulf War Advocates Purged for Telling the Truth? More retaliation against government whistleblowers" [Archived]

 Forbes (Rebecca Ruiz), June 21, 2013: "Critics Concerned over VA's 'Sweeping' Changes to Gulf War Illness Panel" [Archived]

 Military Times/Army Times/Navy Times/Air Force Times/Marine Corps Times (Patricia Kime), June 21, 2013:  "VA Gulf War Panel Members Walk Out to Protest Changes" [Archived]

 91outcomes (Anthony Hardie), June 21, 2013: "VA Censors blocking Gulf War veterans' comments on VA blog"

 91outcomes (Anthony Hardie), June 20, 2013: "VA Responds -- Not to Gulf War Veterans -- But Via Press Release"

 The American Conservative (Kelley Vlahos), June 17, 2013, "Gulf War Panel: We're being purged for Contradicting VA" [Archived]

 91outcomes, June 15, 2013, "Gulf War veterans react to VA's retaliation against Gulf War Illness panel," many comments by Gulf War veterans.

 New York Times (Jim Dao), June 14, 2013: "Researchers find biological evidence of Gulf War Illnesses", mentions VA steps to reduce RAC independence.  [Archived]

 91outcomes (Anthony Hardie), June 14, 2013, "VA responds to allegations of retaliation with spin, mistaking motion for progress," includes VA press response text with analysis.

 Democratic Underground (William Pitt), June 14, 2013: "Advocates Say VA Gutting Gulf War Illness Panel" [Archived]

 Fox News (Jennifer Griffin), June 14, 2013, "More trouble for the Department of Veterans Affairs: Calls for director to step aside" [Archived]

 91outcomes, June 13, 2013, "The Story behind the USA Today Story, 'Advocates Say VA Gutting Gulf War Illness Panel'"

 USA Today (Kelly Kennedy), June 13, 2013, "Advocates Say VA Gutting Gulf War Illness Panel" [Archived]

Key RAC Documents
1) Gulf War Research Strategic Plan, Jan. 23, 2012.  This is the final version of the consensus plan -- aimed squarely at developing treatments to improve the health and lives of ill Gulf War veterans -- before VA staff unilaterally whitewashed it.  

BEFORE:  Final consensus draft plan (Jan. 23, 2012), prior to unilateral VA staff changes.  Also see RAC Comments regarding this final draft strategic plan.

AFTER:  VA Staff Plan (May 31, 2012) – whitewashed and gutted by VA staff without regard for the consensus gained in developing the final plan. 

DIFFERENCES BETWEEN THE TWO PLANS:
  • Comparison document showing changes made by VA after RAC's conclusion with the plan.
  • A modified comparison version of the Jan. 23, 2012 Final Draft Consensus Plan, modified to show VA's edits made in VA's May 31, 2012 version after RAC's conclusion with the plan.

 2) RAC "No confidence" report, June 19, 2012.  Blasts VA, stating the RAC unanimously, "has no confidence in the ability or demonstrated intention of VA staff to formulate and execute an effective VA Gulf War illness research program."

3) RAC "Gulf War Illness is Real" report, Nov. 17, 2008.  This is the landmark Gulf War Illness federal government report.  

Key Congressional Documents

March 13, 2013 Congressional Investigative Hearing, U.S. House of Representatives, Veterans' Affairs Subcommittee on Oversight & Investigations, "Gulf War: What kind of care are veterans receiving 20 years later?", March 13, 2013.  Testimony by VA senior-researcher-turned-whistleblower Dr. Stephen Coughlin, RAC Past Scientific Director Dr. Lea Steele, RAC Gulf War veteran member Anthony Hardie, and others.  

H. Rpt. 105-388, "Gulf War Veterans’ Illnesses: VA, DOD Continue To Resist Strong EvidenceLinking Toxic Causes To Chronic Health Effects," Sep. 7, 1997.  Led to the creation of legislation to provide VA Gulf War Illness benefits, create the RAC.  [Archived]

Congressional Record, Remarks of key bill sponsors regarding 1998 Persian Gulf War veterans' comprehensive legislation (contained in 105th-H.R. 4110), including creation of the Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses, Oct. 10, 1998.


Congressional Record, Remarks of Rep. Joseph P.Kennedy II regarding Persian Gulf War veterans' comprehensive legislation, including creation of the Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses, Aug. 7, 1998.  

Public Law 105-277.  Title XVI, called the "Persian Gulf War Veterans Act of 1998," created a process for presumptive conditions for VA service-connected disability ratings purposes.  

 Public Law 105-368, one of two key pieces of 1998 legislation providing new benefits for Gulf War veterans, including creation of the Research Advisory Committee (RAC) on Gulf War Veterans' Illnesses.  Section 104 created the RAC.   VA delayed for more than three years beyond its statutory obligation to create the RAC no later than January 1, 1999, and VA staff have fought against implementing the RAC's recommendations ever since.   For more history of the RAC, see, "Looking Back: Gulf War Veterans Won Victory with Creation of the RAC".

 Together, Gulf War veterans call these landmark two laws the "Gulf War Veterans Acts of 1998".


Congressional Research Service (Wendy R. Ginsberg), “Federal Advisory Committees: An Overview,” (R40520), Jan. 24, 2011.




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FORBES: Inside The [IOM] Effort to Define Gulf War Illness


Source: Forbes (Rebecca Ruiz reporting)
http://www.forbes.com/sites/rebeccaruiz/2013/06/28/inside-the-effort-to-define-gulf-war-illness/print/



Forbes


Rebecca Ruiz
Rebecca Ruiz, Contributor
I look at research and policies that affect our soldiers.
PHARMA & HEALTHCARE
 
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6/28/2013 @ 5:10PM |216 views

Inside The Effort to Define Gulf War Illness

There are few diseases as contested, politicized and elusive as Gulf War Illness. Though it effects as many as 250,000 veterans of the 1990-91 conflict, we known little about why it struck that cohort or how it causes a cluster of chronic, medically unexplained symptoms.
The disorder is debilitating; patients often report fatigue, respiratory difficulty, gastrointestinal distress, and unyielding joint and muscle pain, but the symptoms are not uniform or universal. A report produced by the Institute of Medicine earlier this year defined the illness “as the presence of a spectrum of chronic symptoms in at least two of six categories—fatigue, mood and cognition, musculoskeletal, gastrointestinal, respiratory, and neurologic—experienced for at least six months.”
Now, the IOM faces the task of developing a “consensus case definition” for the disease that will provide researchers and clinicians with clear guidelines on how to conduct effective studies and counsel patients about treatments.
Throughout this yearlong process, a panel of experts appointed by the IOM will extensively review scientific and medical literature on Gulf War Illness symptoms and offer its recommendation to VA by April 2014. This work, advocates say, is critical to ensuring that scientists focus on the right questions when designing studies and that physicians are well-educated about the disease’s symptoms and how they might be treated with currently available medication.
Dr. Kenneth Shine, a former IOM president who is chairing the committee, said it will be challenging to develop a new definition that is both specific enough to guide research but also sensitive enough to describe symptoms that a physician might see in a patient. It is also a unique task; Shine could not recall when the IOM was last charged with defining a disease.
The panel's chair...  could not recall when the IOM was last charged with defining a disease...
Skepticism of the process also runs deep amongst some panel members. When the committee met for the first time on Wednesday in Washington, D.C., Anthony Hardie, a veteran and member of a federal research advisory committee on Gulf War Illness, testified that some experts had previously expressed views or been involved in research suggesting that Gulf War Illness is a psychiatric disorder, an explanation that is now disavowed by VA.
Shine, however, said that the field has evolved since those studies were published, a time when there was limited knowledge and data about the disease. “These are individuals who have very open minds on evaluating evidence,” he said. “They are perfectly prepared to modify their views.”
He said that panelists with medical expertise who have not researched the disease help “maximize objectivity” by providing an “independent” view since they have not received related funding from the Department of Defense or VA. Shine also said that one or two new experts may be added to address the debate over whether  the committee has all the expertise it wants or needs.
Jim Binns, the longtime chairman of the federal research advisory committee, said he remains concerned that the panel includes members that “represent discredited points of view” as well as psychosomatic and mental illness experts. Yet, he was encouraged to hear consensus over linking the new definition for the illness to Gulf War service. “The working definition published earlier this year by another IOM committee included half the illnesses known to man and would make research to discover treatments and diagnostic tests virtually impossible,” he said in an email.
David Winnett, a retired Marine Corps captain with Gulf War Illness who attended the meeting, was also pleased that the definition will have a specific connection to wartime exposure rather than vaguely overlapping with similar diseases.
Prior to serving on the IOM committee, Winnett helped review research proposals as part of a different panel, and said the studies were “all over the map.” In recent years, though, he noticed that scientists were increasingly focusing on neurological studies, which have shown promising results in explaining the mechanisms of Gulf War Illness. If the IOM can provide a more precise definition, it will give researchers critical guidance.
“At this point, all we can do is wait and see what they come up with,” Winnett said of IOM’s efforts. “I’m cautiously optimistic that we’re going to get a fair shake here, but only time will tell.”

This article is available online at:
http://www.forbes.com/sites/rebeccaruiz/2013/06/28/inside-the-effort-to-define-gulf-war-illness/


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Wednesday, June 26, 2013

NAVY TIMES, ARMY TIMES, ETC: Gulf War illness advocates skeptical of institute panel

SOURCE:  Navy Times, Army Times, Air Force Times, Marine Corps Times
http://www.navytimes.com/article/20130626/BENEFITS06/306260010/Gulf-War-illness-advocates-skeptical-institute-panel




Gulf War illness advocates skeptical of institute panel

Jun. 26, 2013 - 10:04AM   |  
0 Comments

By Kelly Kennedy
USA TODAY
  • FILED UNDER
Veterans advocates expect a showdown between Gulf War veterans and the Department of Veterans Affairs on Wednesday when veterans plan to declare they have “no confidence” in new research commissioned by the VA through the Institute of Medicine, advocates say.
The Institute of Medicine will conduct its first meeting Wednesday to determine the definition of Gulf War illness, sparking concern that VA will label it as psychiatric, or, as it has done most recently, lump it into the category of “chronic multisymptom illness.” That category includes veterans with post-traumatic stress disorder, which is caused after exposure to trauma, or traumatic brain injuries.
“I am very concerned as an ill Gulf War veteran that IOM Gulf War committees and the board overseeing them are disproportionately made up of individuals predisposed toward views of Gulf War Illness that do not reflect current scientific knowledge, including the idea that it is fundamentally psychiatric or psychosomatic,” wrote Anthony Hardie, a Gulf War vet and Research Advisory Committee on Gulf War Veterans’ Illnesses, in a letter to the institute.
VA officials “reject the notion some have put forward that these physical health symptoms experienced by Gulf War Veterans arise as a result of mental health issues like post-traumatic stress and TBI,” said Josh Taylor, a department spokesman.
The Institute of Medicine is an independent, nonprofit research arm of the National Academies, an umbrella research organization that includes academies for science and engineering.
In January, advocacy groups criticized an institute report that said there are too many symptoms or illnesses to determine a cause or cure for a single problem related to service in the 1991 Persian Gulf War.
The Research Advisory Committee was formed after Congress found VA had focused most, if not all, of its attention on psychiatric causes of the illness, which affects about 250,000 veterans of the 1991 Persian Gulf War that drove Iraqi forces from Kuwait.
Since then, researchers have found changes in the veterans’ brains that signify physical degeneration, possibly caused by environmental exposure. Other studies have determined that a greater number of troops than initially thought may have been exposed to small doses of Sarin gas after the Air Force bombed an Iraqi chemical factory.
Symptoms include fatigue, muscle pain, cognitive issues, rashes and irritable bowel syndrome.
Last month, committee members accused VA of an attempted gutting of their group, claiming that half of their members were to be replaced and that their chairman, James Binns,was being pushed out.
Taylor said the changes in the committee’s charter were decided last fall and were part of a plan to make all advisory committees follow the same procedures.
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