Gulf War Veterans August 2013 Letter to VA's Dr. Robert Jesse Remains Unanswered

On August 26, 2013, Gulf War veteran Paul Sullivan and twelve other Gulf War veteran leaders submitted a letter to Dr. Robert Jesse at the U.S. Department of Veterans Affairs (VA) regarding serious policy concerns regarding VA's mishandling of Gulf War Illness.

To date, Dr. Jesse has failed to respond to a single one of the serious policy concerns raised in this letter.

Furthermore, Dr. Jesse has failed to meet with Paul Sullivan or any of the Gulf War veteran leaders on this letter.

See the full letter here:

August 26, 2013

Robert L. Jesse, M.D.

Principal Deputy Under Secretary for Health

Veterans Health Administration

U.S. Department of Veterans Affairs

810 Vermont Avenue, NW

Washington, DC 20420

Dear Dr. Jesse:

Thank you for taking the time to meet with me on Friday, August 9, 2013.  This letter memorializes our meeting, describes the continuing serious government failures that still harm hundreds of thousands of Gulf War Veterans, and describes specific and immediate reforms expected by Gulf War Veterans related to Gulf War Illness.

I look forward to meeting with you again in September as we agreed, with the expectation the Department of Veterans Affairs (VA) will by then have made substantial progress remedying the specific, significant concerns we discussed and which are further described in detail in this letter as well as the documents listed in this letter.

Please be mindful of history.  Due to widespread corruption within the Veterans Administration after World War II, President Harry Truman named retired Army General Omar Bradley to clean house at the beleaguered agency.  His wise quote below should provide guidance to leaders at the Department of Veterans Affairs:

We are dealing with Veterans, not procedures; with their problems, not ours. 

During our meeting, you asked me to describe the “disconnects” within VA that prevent VA from providing healthcare and benefits to the more than 250,000 Veterans who deployed to the 1991 Gulf War and who remain ill due to toxic exposures in Southwest Asia.  In summary, VA has failed Gulf War Veterans for more than two decades and continues to fail our generation at every turn.  VA itself is entirely disconnected from the needs of ill Gulf War Veterans.

As you are aware, VA intentionally blocks meaningful scientific research.  This lack of meaningful government research then blocks the search for answers, treatments, and appropriate disability compensation plus other benefits.  VA’s failures on this issue start at the top, and they permeate the entire department.

As we discussed, though VA may not want it, VA desperately needs independent and objective input as well as to listen carefully to the needs of Gulf War Veteran patients.  Without significant outside input, VA’s current leaders, including you, will remain unable to lead the department on these issues for several reasons.  Nearly all of VA’s leaders lack a clear understanding of the many issues raised by Gulf War Veterans and the Research Advisory Committee on Gulf War Veterans' Illnesses (RAC), Gulf War scientific research, and the suffering and needs of the more than 250,000 ill Gulf War Veterans.

And for you personally, you are further hindered by your lack of military training or experience, lack of war theater deployment, and lack of experience with toxic exposures, which are disconcerting given your new role as VA’s “point person” on Gulf War Veteran health and benefit issues.  Reaching out to me is appreciated, yet there are so many more actions VA must take on the issue.

In preparation for our August 9 meeting, I e-mailed you vital reading materials, including:

• September 7, 1997, “Bi-Partisan House Report on Gulf War Veterans' Illnesses” that led to the passage of the “Persian Gulf Veterans Act,” Public Laws 105-277 and 105-268 in 1998, including the creation of the RAC.
• December 4, 2012, “Statement for the Record,” by 14 leading Gulf War Veteran advocates to the House Veterans’ Affairs Committee listing specific reforms.
• June 10, 2013, letter to VA Secretary Shinseki by all the Gulf War Veterans on the RAC objecting to his effective termination of the RAC’s mission.

For our nearly two-hour meeting, you and Dr. Madhulika Agarwal had no apparent agenda beyond what is described in the next paragraph, and you both admitted you were not prepared to understand VA’s rampant, continuing failures or the practical recommendations previously made by Gulf War Veterans and the RAC.  You appeared to be unaware of key reports, investigations, and participants, especially those impeding scientific research, and you showed a lack of preparation for our meeting.

Worse than being unprepared, you repeatedly attempted to shift the focus of the meeting to your apparent ultimate objective: how could I help you to improve VA’s tattered reputation.  I remind you now as I did during our meeting that VA’s tarnished reputation among Gulf War Veterans was caused by VA’s ongoing failures.  For example, when I discussed restoring the RAC to the correct 2010 version, you stated it would be an embarrassment to Secretary Eric Shinseki to change it.

The goal of Veterans remains unchanged and momentum is growing: to restore the RAC and enhance the RAC’s abilities to provide recommendations to the Secretary that will be heeded.  You, VA, and Veterans need the RAC, which faithfully executes the mission intended by Congress in 1998.

The best way to fix VA’s wholly deserved negative public image problem is to promptly and adequately address the underlying issues.  If you attempt to continue VA’s ineffective efforts and merely spin these issues away, without long overdue meaningful fixes benefiting a large group of ill Veterans VA was created to assist, then you can rest assured you will be personally responsible for further worsening VA’s “image” issue. 

In an apparent effort to deflect from the travesties current VA leaders are inflicting on Gulf War Veterans, you brought up the Secretary’s 2010 favorable decision to provide healthcare and disability benefits for hundreds of thousands of surviving Vietnam War Veterans sickened by Agent Orange/dioxin while deployed to Southeast Asia.  The scientific evidence and laws justifying the decision were overwhelming and clear.  The Secretary made the right decision, and I strongly supported it.  However, VA’s tardy decision came only after four decades of bureaucratic VA delays and denials while untold thousands of Vietnam War Veterans suffered and died without VA treatment and benefits.

I am concerned you apparently failed to grasp that VA’s decision regarding Vietnam War Veterans does not impact the more than 250,000 ill Gulf War Veterans that were the subject of our meeting.  Tragically, some of the same former VA and Department of Defense (DoD) officials responsible for delays in providing Vietnam War Veterans their earned healthcare and benefits now delay inquiries into Gulf War Veterans’ illness.

Gulf War Veterans are newly reinvigorated, increasingly unified, and will not wait decades for answers, care, or benefits.  Gulf War Veterans reject VA’s vicious attempt to delay care and benefits by kicking the can down the road to the next Secretary and President to review in the future.  We remain firmly committed to the development of effective treatments, and demand change at VA now.  VA must not repeat the delays that harmed so many Vietnam War Veterans, nor continue the denials and delays that continue to harm Gulf War Veterans.  We do this in part so Afghanistan and Iraq War Veterans do not suffer the same fate. 

Gulf War Veterans were encouraged by the Institute of Medicine 2010 Gulf War panel, which stated that, with the proper research, effective treatments, cures, and preventions are likely to be found for the chronic multisymptom illness that afflicts more than one-third of Gulf War Veterans.  For VA to continue to deliberately refuse to pursue the right research is unconscionable.  We are frustrated and irate that VA does nothing when there is the real probability that effective treatments can indeed be found, as the IOM stated in 2010.

During our meeting I took notes.  However, I remain troubled that you and Dr. Agarwal took no notes at all, suggesting your lack of interest in anything I had to say on behalf of my fellow Gulf War Veterans or my two decades of experience uncovering toxic exposures, testifying before Congress, drafting legislation, and working at VA on this subject. 

I remain deeply disappointed that you and Dr. Agarwal refused to admit any VA current or past error during our meeting, specifically:

• VA’s failure to acknowledge the widespread extent, neurological nature, and toxic causes of Gulf War illness – and corresponding failure by VA and DoD to conduct meaningful scientific research into Gulf War Illness treatments for more than two decades (with the exception of the Congressionally directed, treatment-focused Gulf War Illness research program run outside regular DoD and VA research efforts).
• VA’s failure to provide effective medical care and appropriate disability benefits to hundreds of thousands of disabled Gulf War Veterans suffering from Gulf War Illness.
• VA’s failure to honestly and properly contract with the Institute of Medicine to review matters related to Gulf War Illness.
• VA’s failure to address or even respond to RAC recommendations and letters by Gulf War Veterans.
• VA’s failure to address key toxic exposures, including, but not limited to the radioactive and toxic heavy metal depleted uranium and chemical warfare agents such as sarin, cyclosarin, and mustard poison gases.
• VA’s failures in flouting the law (PL 105-368) by essentially killing the RAC in May 2013, which was in blatant retaliation for the RAC’s June 2012 unanimous vote of “no confidence” in VA’s staff and the RAC’s apparent role in a March 13, 2013, Congressional oversight hearing that provided an important glimpse into the metastasizing cancer that afflicts VA’s research and affects all eras of Veterans on issues ranging from Gulf War Illness to burn pits and beyond.

Therefore, in addition to the 1997 Congressional report, other Congressional hearings on Gulf War illness, several IOM reports citing a lack of DoD and VA research into the health effects of toxic exposures, the Veterans’ statements to Congress, and the Veterans’ letter to the Secretary, I restate Gulf War Veterans’ legitimate and reasonable expectations, some of which we discussed during our meeting and other parts of which are fully described in testimony, reports, and correspondence to VA leadership, all of which remain wholly unaddressed by VA:

1. VA must adopt the recommendations made by the RAC since 2002.  Nearly 16 years after Congress condemned VA and created the RAC in response to abject VA failure of an entire generation of Veterans, the VA still has a “tin ear, cold heart and closed mind” with regards to Gulf War Veterans.  VA must respond in a timely, complete, professional, and public manner to the recommendations made by the RAC by fully implementing the RAC’s recommendations; or, VA must fully and publicly justify in writing why full implementation is not possible.  VA must fully address the series of issues raised in the RAC’s many reports, including the RAC’s June 12, 2013, “no confidence” report.
2. VA must fully address the recommendations from Gulf War Veterans contained in other documents: the December 4, 2012, Statement for the Record; the March 13, 2013, hearing of the House Veterans’ Affairs Committee; and the June 10, 2013, letter to Secretary Shinseki.
3. The Obama Administration must address the cancer inside VA and DoD by rooting out and permanently removing all VA and DoD staff abusing their positions by working against the interests and health needs of Gulf War and other Veterans injured by toxic exposures and other deployment health hazards.  For years, these individuals abused their positions and influence, including through the Deployment Health Working Group, to spin rather than address legitimate deployment health issues, much as you and Dr Agarwal sought to do during our meeting. These personnel include but are not limited to:  Dr. Kelley Ann Brix, at DoD’s Office of Force Health Protection and Readiness; Dr. Michael R. Peterson and Dr. Aaron Schneiderman, at VA’s Office of Public Health; Dr. Timothy O’Leary at VA’s Office of Research & Development; Dr. Charles Engel, at DoD’s Deployment Health Clinical Center; Dr. Frances Murphy, at the Institute of Medicine; Dr. Mark Brown, previously at VA but now within DoD’s deployment health field.
4. VA must immediately terminate the IOM panel on creating a case definition for Chronic Multisymptom Illness in Gulf War Veterans.  This expensive panel was neither directed nor authorized by Congress.  With the current and recently expanded psychosomatic focus of many of its panelists, this specific IOM panel is detrimental to the legitimate health interests of Gulf War Veterans.  In its place, VA must fully heed and implement the RAC’s recommendations for creating a new Gulf War Illness case definition as specified in the original VA Strategic Plan on Gulf War Illness research, prior major detrimental edits by wayward VA staff.
5. VA must take the necessary actions to correct the definition of the Southwest Asia theater of operations (war zone) as described under 38 Code of Federal Regulations 3.317 so that it properly includes Gulf War military service in Israel, Turkey, and adjacent areas.  This is fully described in Gulf War Veterans’ December 4, 2012, Statement for the Record to the House Committee on Veterans’ Affairs.  The military recognizes these geographic areas as eligible for receipt of the “Southwest Asia Service Medal,” and these Veterans were also exposed to toxins while deployed.  VA’s continued unjust refusal to include these Gulf War Veterans denies them their justly earned healthcare and disability benefits.
6. VA must restore public accountability on Gulf War Veterans’ disability claims by reinstituting the quarterly claims reporting reports.  These Congressionally mandated quarterly public reports were formerly known as the Gulf War Veterans Information System reports, and later as the Pre-9/11 reports.  The RAC provided important recommendations on these reports in a February 1, 2012, report to VA.  The RAC’s report was ignored by VA.  These recommendations must be addressed and the quarterly public reporting – a demonstration of a commitment to public transparency about the consequences of war and VA’s response to Veterans’ needs – must be restored.
7. VA must restore the VA-DoD project for the creation and maintenance of the Virtual Lifetime Electronic Records.  Without accurate record collection, retention, and access to confirm toxic exposures or other military events, Veterans are often denied essential VA healthcare and disability benefits.  The lack of records often prevents scientists as well as IOM literature reviews from determining the impact of toxic exposures on service members and Veterans.  The military admits records were destroyed during the 1991 Gulf War as well as subsequent military operations in Afghanistan and Iraq, placing an unreasonable burden on Veterans to find evidence of medical conditions that began in or were exacerbated by service.
8. Finally, VA must immediately restore the RAC’s 2010 Charter and retain James Binns as RAC Chair.  VA flouted the law and its publicly stated intent by gutting the RAC’s treatment-focused oversight mission.  Your claim to me that VA needs to have streamlined procedures for advisory committees is not only false, but it flies in the face of the publicly stated intent of Congress that in 1998 created the RAC as a watchdog oversight body intended to keep then entire federal government on task to develop effective treatments for ill Gulf War veterans, a task at which VA has utterly failed and continues to fail.  I am truly disappointed in your lack of historical understanding regarding the creation of the RAC for the benefit of Veterans, VA, Congress, and objective scientific inquiry.

I recognize that you, Dr. Agarwal, and I agreed to a meeting in mid-September.  However, it should go without saying that a meeting with only more talk, no notes, and no follow-through actions by VA is not enough.  VA must demonstrate substantive action prior to our next meeting.  If there are no substantive VA improvements, then the meeting will be yet another empty VA gesture that only serves to demonstrate VA’s continuing demonstrated intent to further delay research, treatment, and benefits for an entire generation of Veterans.

In the time leading up to the landmark legislation that created the RAC and provided a foundation for Gulf War Veterans’ research, healthcare, and benefits, Congress concluded in September 1997, after 19 months, of hearings that VA’s efforts were flawed. In the prelude to creating the RAC to help oversee and watch over VA’s breathtaking failures of Gulf War Veterans, Congress described VA:

We find [VA’s] efforts hobbled by institutional inertia that mistakes motion for progress. We find those efforts plagued by arrogant incuriosity and a pervasive myopia that sees a lack of evidence as proof.  As a result, we find current approaches to research, diagnosis and treatment unlikely to yield answers to veterans' life-or-death questions in the foreseeable, or even far distant, future.

In plain English, Congress concluded VA was saying a lot, but doing little to nothing to actually improve the lives of Gulf War Veterans ill due to wartime toxic exposures.  Today, we Veterans find ourselves “back to the future,” and dealing with this exact same mentality throughout a VA more concerned about image than substance, more concerned about words than achievements, and more concerned about procedures than Veterans.

With or without you, Gulf War Veterans will work to ensure that VA complies with adhering to our nation’s solemn obligation to leave no Veteran behind.  Rest assured that the public image issues about which you seem so single-mindedly concerned will only worsen should VA fail to make long-overdue and substantive improvements.

VA needs to earn the trust of Veterans.  I hope you will take this opportunity for us to work together with me, fellow Veterans, and the RAC for the benefit of our ill Gulf War Veterans, whose interests and needs are clear, legitimate, and unfulfilled.  A list of Gulf War veteran leaders supporting this letter appears below.  I look forward to hearing from you soon about our next meeting date as well as verifying the steps VA is taking to improve the lives of our nation’s Gulf War Veterans.

Sincerely,

 

Paul Sullivan

Gulf War Veteran

 

Joined by fellow Gulf War Veterans: Brent Casey, Daniel Fahey, William Fuzi, Joel Graves, Peter Greene, Anthony Hardie, Marguerite Knox, Chris Kornkven, Vera Roddy, Charles Sheehan-Miles, and David Winnett.

CC:    The President

          The Honorable Bernie Sanders

          The Honorable Richard Burr

          The Honorable Jeff Miller

          The Honorable Michael Michaud

          The Honorable Jason Chaffetz

The Honorable John Tierney

The Honorable Mike Coffman

          The Honorable Ann Kirkpatrick