Veterans for Common Sense provided the following invited testimony for a February 23, 2016 Congressional hearing on Gulf War veterans’ health. Anthony Hardie, VCS Director, testified and was accompanied by fellow Gulf War veteran and advocate David Winnett. Winnett’s compelling statement for the record is below, immediately following Hardie’s.
The hearing was timed to coincide with the 25th anniversary of the 1991 Gulf War ground invasion to liberate Kuwait from Iraqi military occupation.
TESTIMONY OF ANTHONY HARDIE, GULF WAR VETERAN AND DIRECTOR, VETERANS FOR COMMON SENSE
BEFORE THE U.S. HOUSE OF REPRESENTATIVES, COMMITTEE ON VETERANS’ AFFAIRS, SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS
FOR A FEBRUARY 23, 2016 HEARING ENTITLED:
“PERSIAN GULF WAR: AN ASSESSMENT OF HEALTH OUTCOMES ON THE 25TH ANNIVERSARY”
Thank you, Chairman Coffman, Ranking Member Kuster, and Members of the Committee for today’s hearing and for this opportunity to appear before you.
I’m Anthony Hardie, a 1991 Gulf War and Somalia veteran, and Director of Veterans for Common Sense. I’ve provided testimony on several previous occasions, but today is especially notable.
Twenty-five years ago tonight, we launched the ground war of Operation Desert Storm and successfully liberated Kuwait. Tonight, I would like us to remember and honor of the nearly 300 of our fellow Gulf War men and women who made the ultimate sacrifice. I would also like us to remember and honor the nearly 700,000 veterans of the Persian Gulf War, who under the direction of our military leaders led our broad international Coalition to decisive military victory.
“Our” war was relatively short: just a five-month buildup, and then a six-week war before a swift military victory. However, you’ve heard my personal experiences before, and you’ve heard the stories of many other Gulf War veterans, and as this Committee knows, between one-fourth and one-third of us returned home with serious and debilitating health issues now known as Gulf War Illness. And, we faced a new battle, a much longer war – a war to obtain effective healthcare and VA assistance from entrenched government officials who seemed intent on proving there was nothing wrong with so many Gulf War veterans, that it was all in our heads, just stress, the same as after every war.
1998 PERSIAN GULF WAR VETERANS LEGISLATION
It took almost eight years after the war before our major legislative victory, with the enactment of the Persian Gulf War Veterans Act of 1998 (Title XVI, PL 105-277) and the Veterans Programs Enhancement Act of 1998 (PL 105-368, Title I—“Provisions Relating to Veterans of Persian Gulf War and Future Conflicts”) – two landmark bills that set the framework for Gulf War veterans’ healthcare, research, and disability benefits.
For those of us involved in fighting for the creation and enactment of these laws, they seemed clear and straightforward, with a comprehensive, statutorily-mandated plan that would guarantee research, treatments, appropriate benefits, and help ensure that lessons learned from our experiences would result in never again allowing what happened to us to happen to future generations of warriors.
The legislation included a long list of known Gulf War exposures. VA was to presume our exposure to all of these, and then, with the assistance of the National Academy of Sciences (NAS), evaluate each exposure for associated adverse health outcomes in humans and animals. In turn, the VA Secretary would consider the reports by the NAS’s Institute of Medicine (IOM), “and all other sound medical and scientific information and analyses available,” and make determinations granting presumptive conditions. There was a new guarantee of VA health care. There would also be a new national center for the study of war-related illnesses and post-deployment health issues, which would conduct and promote research regarding their etiologies, diagnosis, treatment, and prevention and promote the development of appropriate health policies, including monitoring, medical recordkeeping, risk communication, and use of new technologies. There was to be an effective methodology for treatment development and evaluation, a medical education curriculum, and outreach to Gulf War veterans. Research findings were to be thoroughly publicized. To ensure the federal government’s proposed research studies, plans, and strategies stayed focused and on track, VA was to appoint a research advisory committee that included Gulf War veterans – presumably those who were ill and affected – and their representatives.
Instead, we learned that enactment of those laws was just another battle in our long war.
From the beginning, VA officials fought against implementing these laws, dragging their feet and upending their implementation.
The creation of the “national center” never met Gulf War veterans’ expectations. The long list of toxic exposures never led to a single exposure-related presumption. Many of the exposures were never even considered, and those that were didn’t include evaluation of the health effects in laboratory animals with respect to likely health outcomes in ill Gulf War veterans. The research never led to effective, evidence-based treatments and indeed had little treatment focus until after Congress established a treatment-focused research program outside of VA.
And only after significant pressure and a change in Administrations did VA finally establish the research advisory committee (RAC) – more than three years after the statutorily mandated January 1, 1999 deadline. But, VA then systematically ignored its recommendations, and diminished its findings. When it sharpened its criticism of VA’s failures related to Gulf War veterans, VA staff led measures to substantially diminish its charter and discharge all of its members.
As a last ditch effort to call attention to VA’s myriad failures of Gulf War veterans, I led Gulf War veterans’ resignations from the RAC in June 2013. Subsequently, the House unanimously passed legislation that would have restored and enhanced the research advisory committee and helped Gulf War veterans, for which we remain grateful. Unfortunately, the Senate failed to take action and the bill died in Congress.
I served on the RAC for eight years and remain deeply impressed by the broad knowledge, demonstrated commitment, and impressive accomplishments aimed at solving Gulf War Illness of the scientists and doctors who served on and appeared before the panel. And, I remain proud of the work of dozens of researchers and Gulf War veteran stakeholders who came together to produce a comprehensive strategic plan aimed at solving Gulf War Illness, identifying other health conditions in Gulf War veterans, and helping achieve the laudable goals of the 1998 Gulf War legislation. Sadly for ill Gulf War veterans, nearly all of the provisions of that research strategic plan remain unimplemented, like so much of the rest of VA’s half steps in implementing and achieving the goals of the 1998 legislation.
And in a 2013 hearing by this Committee, we learned from a top VA epidemiologist-turned-whistleblower many of the sordid details of officials within the VA’s Office of Public Health who failed to ask the right questions in research that would lead to showing the real post-deployment health outcomes for Gulf War and other veterans, and often obfuscated research findings when they showed results that might show significant health outcomes.
That leads us to today.
NEW IOM REPORT
Two weeks ago, the NAS’s Institute of Medicine (IOM) released its newest and supposedly final report in the extended, “Gulf War and Health,” series under VA contract as directed by the 1998 legislation. Entitled, “Gulf War and Health, Volume 10: Update of Health Effects of Serving in the Gulf War, 2016,” it is highly problematic. While IOM’s Volume 10 acknowledged that Gulf War illness is the signature adverse health outcome of the 1991 Gulf War – a fact that has been known by Gulf War veterans since the early 1990s and definitively shown by science since at least 2004 – its research and treatment recommendations range from disappointing to potentially damaging to the health and lives of Gulf War veterans with Gulf War Illness.
IOM’s Volume 10 recommends no further research using animal models of Gulf War toxic exposures (p. 251). While the IOM Volume 10 panel acknowledged that an animal model would be advantageous for identifying and evaluating Gulf War Illness treatment strategies, they then suggested that the precise frequency, duration, dose of Gulf War exposures must be known in order to do so. This amounts to “rolling up the sidewalk” on this promising avenue of Gulf War Illness research, just when it is beginning to unravel the underlying biological mechanisms of Gulf War illness and point to treatment targets.
Past IOM review panels have been limited by VA’s systemic failures in monitoring, assessing, and reporting the incidence and prevalence of health symptoms and diagnosed diseases in Gulf War (and other cohorts of) veterans. The IOM Volume 10 panel was similarly limited. As one example, IOM’s Volume 10 report reads, “Because cancer incidence in the last 10 years has not been reported [by VA], additional follow-up is needed.” (p.102). IOM’s Volume 10 panel was tasked with reviewing published medical literature since the last major review six years ago, but due to one of VA’s many failures couldn’t do so because this new data hasn’t been reported by VA.
However, unlike the panel’s recommendation for additional follow-up with cancer incidence, IOM’s Volume 10 committee instead inflicted damage when they recommended that, “further studies to assess the increased incidence and prevalence of circulatory, hematologic, musculoskeletal, gastrointestinal, genitourinary, reproductive, endocrine and metabolic, respiratory, chronic skin, and mental health conditions due to deployment in the Gulf War should not be undertaken” (pp. 9-10). Unlike IOM panels that are limited by VA’s “don’t look, don’t find” failures, we must not mistake absence of VA evidence for evidence of absence of long histories of these adverse health outcomes in Gulf War veterans.
Like the earlier IOM reports, the Volume 10 panel found no new associations between Gulf War exposures and adverse health outcomes. It also found no new associations between Gulf War service and ill health.
While recommending greater effort towards treatment and acknowledging Gulf War Illness as the signature condition of the 1991 Gulf War, it recommended that research and treatment for Gulf War Illness now focus on, “brain-body interconnectedness.” It also suggests focusing on “management” of Gulf War Illness. Together, these are an apparent departure from the optimism of the 2010 IOM report, which said, “effective treatments, cures, and, it is hoped, preventions … can likely be found.”
The promising new science that is providing keys to Gulf War Illness’s underlying mechanism and promising avenues towards treatment hasn’t shifted course since 2010, it has just provided even greater evidence for the role of toxic exposures in Gulf War Illness and provided increasing detail in closing in on effective treatments. What has changed, however is that the IOM Volume 10 panel and reviewers included some of the same people and the same mindsets as the dark days of the 1990’s, when everything about Gulf War veterans’ exposures and symptoms was characterized as utterly unknowable, when Gulf War veterans’ health issues were marginalized, and when VA and DOD officials seemed intent on restricting Gulf War Illness discussions to “stress” causation and mental health management rather than focusing on evidence-based treatments for Gulf War veterans’ toxic wounds. Those VA and DOD officials denied Gulf War veterans’ toxic exposures, failed to develop treatments or preventions, redirected Gulf War veterans away from the goal of real healthcare, shut down research, and denied benefits. This new IOM recommendation amounts to little more than the same tired old themes from the 1990’s – again, just when Gulf War Illness treatment research is finally making real progress to understand the illness and identify treatments
As I walked through the airport headed home following the meeting where this latest IOM report was released, my shoulder was heavy with a bag full of past IOM Gulf War reports. My heart was even heavier. Twenty-five years after our war, and nearly two decades after the enactment of the 1998 laws, these IOM Gulf War reports nearly fill a small shelf. But despite millions of dollars and countless panel members’ work, the collective weight of these volumes have not associated animal exposures with human health outcomes, have found precious few health outcomes associated with Gulf War service, have not evaluated many of the exposures listed in the 1998 laws, and have added little toward the development of effective, evidence-based treatments for Gulf War Illness. Together, the IOM and its VA taskmaster have had little impact in improving the health or lives of Gulf War veterans with Gulf War Illness or achieving the goals set forth in the 1998 Gulf War legislation.
VA/DOD CLINICAL PRACTICE GUIDELINE (CPG)
As if the massive, multi-volume failure of Gulf War veterans wasn’t enough, VA and DoD have now developed a highly problematic Clinical Practice Guideline for Gulf War Illness that goes back to the darkest days of the 1990s. In this Guideline, VA and DOD lump Gulf War Illness together with psychosomatic and other conditions that together, its authors call, “Chronic Multisymptom Illness” (CMI). It is worth noting that CMI is an overly broad and inappropriate catch-all label that IOM panels have rightly told VA to stop using for Gulf War Illness.
This Clinical Practice Guideline is intended for all healthcare providers – DOD, VA, and beyond. Its primary treatment recommendations for GWI are cognitive behavioral therapy (CBT), exercise, and psychotropic drugs. Suicidal ideation is listed in the Guide as a known “notable adverse effect” for every single one of those medications.
Despite public statements by VA officials, including before this Committee, that Gulf War Illness is not a psychological, psychiatric, or psychosomatic condition, this VA-DoD guide specifically compares “CMI” with a group of, “similar ‘overlapping’ symptom syndromes” and “somatization disorder”. The terms “somatization disorder”, and use the terms “somatization”, “somatization disorder”, “somatoform”, and “somatoform disorder”, and “psychosomatic” a stunning 52 times in the guide. The term, “hypochondriasis” is also used and referenced.
While the Clinical Practice Guideline authors use the term, “evidence-based”, 19 times throughout the document in an apparent attempt to increase its credibility, they go on to state, “treatment of CMI is as much an art as it is a science” (p.8).
Showing its failure to rely on scientific evidence, a growing body of promising scientific research related to inflammatory cytokines, mitochondria and mitochondrial dysfunction (for example), including Coenzyme Q10 as a potential therapy. Yet, the term “cytokine” and variants appear only twice, and no reference whatsoever is made to mitochondria or word variants.
It would seem hard to believe, given the large body of peer-reviewed science on Gulf War Illness that has been published in more recent years, that a DOD or VA clinical guideline produced in 2014 would rely on the old “psychosomatic” fictions of the 1990s or on the VA and DOD officials that championed them. What’s not surprising, however, is that the list of people who developed this guide that relies on psychosomatic artfulness rather than evidence-based treatments included some of the same old names from the dark days of the 1990s.
This guide is another example of VA’s systemic research failures. From, “Don’t look, don’t find,” to a renewed reliance on psychosomatic explanations and “treatments” for Gulf War Illness, the intent of the 1998 laws remain out of reach at VA past and present.
GULF WAR ILLNESS CDMRP
As many of the members of this Committee know, despite the serious problems noted above, there is a great deal of encouragement and hope for ill Gulf War veterans in the science being conducted and published in recent years. Much of this promising new research is in the treatment-focused Gulf War Illness Congressionally Directed Medical Research Program (CDMRP), which exists outside VA or the rest of DoD thanks to Congress, including many of the Members on this Committee.
One-third of the studies funded through this program are testing treatments that might help improve the health and lives of veterans with GWI. Two-thirds of the studies are aimed at Gulf War Illness’s underlying mechanisms, including critically important animal studies that test exposures and measure health outcomes, identify treatment targets, and test treatments.
Three CDMRP-funded treatment studies have already shown promise in reducing certain GWI symptoms, including Coenzyme Q10, Carnosine, and acupuncture. Others have found powerful links between Gulf War toxic exposures and adverse health outcomes and are helping pave the way for treatment development.
The vast majority of this research is still in the pipeline. However, this powerfully encouraging progress could be at risk, by the IOM Volume 10 recommendations and by another IOM panel aimed at all the CDMRPs that is chaired and directed by some of the same former VA and DOD officials of the 1990s who have done so much harm to Gulf War veterans.
If we measure VA’s success by how it has improved Gulf War veterans’ health twenty-five years after the war, VA still has no evidence-based treatments for Gulf War Illness. VA has circumvented or ignored most of the aims of the 1998 laws. Instead, some of those same old VA and DOD officials from the dark days of the 1990s have joined together in their usual old cabal and are once again pushing long-discredited theories of psychosomatic causation and “treatment” in new and potentially influential ways.
In twenty-five years, VA has made little progress on Gulf War Illness, and now appears to be working to roll back the clock to the dark days of the 1990’s.
- Instead of following recommendations on Gulf War Illness research that would lead to improving ill Gulf War veterans’ health and lives, VA eliminated the Research Advisory Committee’s (RAC) ability to evaluate the effectiveness of all federal Gulf War research efforts, limited its scope from all federal research to just VA’s, eliminated its treatment focus mandate, and more.
- VA admitted to “losing” its registry for Gulf War spouses and children. It is unclear what VA has done to recover that data.
- VA continues make reports to Congress that inflate “Gulf War research” spending by including studies that are not specific to Gulf War veterans.
- VA has the authority to develop new presumptives for these ill and suffering veterans, but unlike with Agent Orange, has failed to identify any new conditions beyond a set of rare endemic infectious diseases that affect almost no one.
- IOM’s latest report, shaped by VA’s contract, argues that individual Gulf War exposures are forever unknowable. We knew that when seeking the 1998 legislation, aimed at connecting generic exposure data with health outcomes. VA has stymied those efforts.
- VA has not linked a single adverse health outcome to any Gulf War exposures nor created a single new presumptive condition under the 1998 laws to help suffering veterans beyond the largely irrelevant endemic infections noted earlier.
Twenty-five years later, one-fourth to one-third of us Gulf War veterans continue to struggle with the health and life effects of Gulf War Illness. Others among us have died of ALS, brain cancer, other diseases, suicide. Yet VA, with the aid of DoD and the complicity of the IOM, has made little progress in developing evidence-based treatments or improving the health and lives of veterans suffering from signature injury of the 1991 Gulf War – Gulf War Illness.
Twenty-five years later, ill Gulf War veterans are still in pain. They are suffering. They have been begging for help for years and years. Twenty-five years later, Gulf War veterans are battling against VA and DOD bureaucrats, including some of the very same ones who fought against the 1998 laws in the first place.
We must not continue to allow VA and DoD to substitute “risk communication” for evidence-based healthcare, psychosomatic drugs for treatment-focused research, spin for substance, or “Don’t look, don’t find” for the objective collection, analysis, and reporting of deployment health outcomes. The letter, the spirit, and the intent of the 1998 Persian Gulf War laws have yet to be achieved.
On this 25th anniversary of the war, our Gulf War veterans deserve the best that modern science and the U.S. government can offer to improve their health and lives. Mr. Chairman, as one of us Gulf War veterans, and Members of this powerful Committee, please join together with your colleagues on both sides of the aisle and in both houses and help fix these serious issues, once and for all.
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STATEMENT FOR THE RECORD OF DAVID K. WINNETT, JR. GULF WAR VETERAN
BEFORE THE U.S. HOUSE OF REPRESENTATIVES, COMMITTEE ON VETERANS’ AFFAIRS, SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS
FOR A FEBRUARY 23, 2016 HEARING ENTITLED:
“PERSIAN GULF WAR: AN ASSESSMENT OF HEALTH OUTCOMES ON THE 25TH ANNIVERSARY”
Thank you, Chairman Coffman, Ranking Member Kuster, and Members of the House Veterans’ Affairs Subcommittee on Oversight and Investigations for today’s hearing.
I also wish to thank my fellow brothers- and sisters-in-arms who have joined this hearing in person, and to those of my fellow Persian Gulf War veterans who are watching these proceedings from afar. The testimony I provide to this distinguished Committee is done in honor of the extraordinary sacrifices that my fellow Gulf War veterans have made over the course of the past 25 years, first by the historic and heroic victory achieved during the 1991 Persian Gulf War, and then by the super human sacrifices made in the years since, both individually and collectively, in fighting what has turned out to be a much more formidable foe than the enemy soldiers we once routed on the toxic battlefields of the Middle East.
I am a 20-year veteran of the United States Marine Corps, having enlisted as a Private in January 1975 and retiring as Captain in 1995. In total, I wore 11 different ranks as a Marine, from Private (E1) through Staff Sergeant (E6), Warrant Officer (W1) through Chief Warrant Officer (W3), then First Lieutenant (earned while deployed to the Gulf) to Captain.
My service as a Marine was, without exception, the most rewarding experience of my life. I appear before this honorable body today, exactly 25 years to the day that I led a Platoon of the most courageous and capable United States Marines I ever had the honor of serving with across the line of departure into Kuwait, along with combat elements of the 1st Marine Division, to liberate that beleaguered country and its people from the occupying grip of a vicious dictator. As history now demonstrates, our mission succeeded well beyond what even the most educated military scholars had predicted earlier.
But sadly, I appear here before this Committee in many respects, a physically broken man. Not as a result of the normal aging process, not from the effects of enemy bullets or shrapnel, and certainly not from the stress of combat operations that occurred 25 years ago, but because of a physiological demon that managed to find a way to penetrate not only the substantial layers of protective clothing and equipment that I wore throughout the ground assault through Kuwait, but into my flesh, my internal organs, and through the blood-brain barrier that normally serves to protect the neurological mechanisms that control our cognitive abilities, our autonomic nervous system, and just about everything in the brain that regulates normal functioning of the human body.
In short, I am, and have been a very physically sick man for the past 20-plus years. But the fact remains, I am here, I am still a United States Marine, and as far as I’m concerned I remain actively engaged in combat, as do hundreds of thousands of my fellow Gulf War veterans. The only thing that has changed over the 25 years that have passed since our rapid and resounding defeat of the Iraqi Army is that now we face a different foe, a foe much more resourceful and stubborn than even the toughest Iraqis that we faced during Operation Desert Storm. It pains me to admit that the battle we fight today is against some within the U.S. government – the same government that sent us to war in the first place.
Over the past few weeks I have read numerous media accounts and engaged in a number of discussions with my fellow veteran advocates regarding the recent report issued by the Institute of Medicine (IOM) entitled, “Gulf War and Health, Volume 10: Update of Health Effects of Service in the Gulf War.” I cannot find words that are of sufficient power to express the disappointment I feel in the conclusions and recommendations contained in that report. Given the substantial body of scientific evidence that over the past decade has proven time and time again, beyond any doubt whatsoever, that Gulf War Illness is indeed a genuine physiological illness and that effective physiological treatments can likely be found, I simply cannot believe that the IOM made a 180-degree turn away from that science to a position that Gulf War Illness should now be treated primarily as “mind-body interconnectedness” – as if it were a mental disorder.
In the interests of providing context to my testimony, I would hope that my military record would serve to support my assertion that when I say that I am physically sick, that I know my own body, and that my health conditions are primarily physical and not psychological, that your Committee would take me at my word. As many of you know, within the ranks of our military, an officer’s word is his or her solemn bond. And when I say that I am convinced beyond any doubt whatsoever that, as countless research studies have shown, more than 200,000 of my fellow Gulf War veterans are as sick or sicker than myself, that your honorable body will trust me on that count as well.
My military career was, by any measure, a quite successful one. Few United States Marines are able to wear 11 different ranks over a period of only 20 years. A four-star General has been promoted nine times, usually over a span of 30 or more years; I was promoted ten times in 20 years. Three of the five promotions I received as a young enlisted Marine were earned “meritoriously”. This is not an easy accomplishment in the Marine Corps, I assure you. During my assignment to the Non-Commissioned Officers (NCO) school at Camp Hansen, Okinawa, I finished second out of a class of 39. As a Sergeant (E5) at the Staff NCO Academy at El Toro, I finished second out of a class of 59, most of whom were very seasoned Staff Sergeants (E6) and Gunnery Sergeants (E7), many of them current or former drill instructors. Three years following that I was among just 250 of 2,500 applicants Marine Corps-wide to receive an appointment to the rank of Warrant Officer (W1), and I completed the Warrant Officer Basic Course in Quantico in the top 10% of my class. Later, while under orders to the Marine Corps Degree Completion Program, I completed a Bachelor of Business Degree (BBA) Magna cum Laude. I worked hard for every single promotion or personal decoration that I received as a Marine. Not once in 20 years did I ever fail to achieve a score of First Class on my quarterly Physical Fitness Tests (PFT). I was a competitive shooter as a young Lance Corporal, competing in the 1976 Far East Division Matches. I was good at whatever I set my mind to do.
I’ve listed these career milestones, not as a means of pounding my chest, but to convey to your honorable body that in 20 years of service as a United States Marine, I was never considered a “quitter” or a “sick bay commando”. I was a competitive person then, and that competitive spirit still lives in me this very day. In fact, were it not for the fighting spirit I learned as a United States Marine, I doubt very much that I would be sitting here today. The point I’m making is this: I am appealing to the honorable members of this distinguished committee to take this Marine at his word. I am not a malingerer. I am not a liar. I am not mentally disturbed. My physical pain is real, and it is severe. The profound fatigue that I live with day in and day out is not a psychosomatic disorder. More importantly, the more than 200,000 of my brothers- and sisters-in-arms who live with the same physical pain and fatigue and other symptoms that I live with are not imagining their illnesses. This preposterous idea that Gulf War Illness should be treated primarily with cognitive behavioral therapy, exercise, and psychiatric drugs as suggested in this new DOD/VA Clinical Practice Guideline as if it were a psychosomatic condition is not only ridiculous, it is highly offensive to the warriors whose lives have been literally destroyed as a result of serving on what was undoubtedly the most toxic battlefield American forces have served on in the history of this great country.
Four years ago my worsening physical condition forced me to walk away from a prestigious position as the Fleet Services Manager for the City of Torrance, California, where I managed a $12 million dollar budget, 36 employees, and a fleet of over 700 vehicles, and had a salary of over $120,000 per year, not counting benefits. Does anyone believe that a rational individual would walk away from such a lucrative career in order to obtain an annual veteran’s disability payment of $36,000 per year?
I have been a very vocal advocate for veterans suffering from Gulf War Illness since 2008. I’ve written a number of op-eds for various news publications around the country, participated in radio and television interviews about Gulf War Illness, and shared quite a few poems written to honor the sacrifices of my fellow veterans. I have been actively involved with the Congressionally Directed Medical Research Program (CDMRP) for Gulf War Illness treatment research for the past six years as a consumer reviewer at both tiers of the review process, first as a member of the Scientific Merit Review panels, and currently as a member of the Programmatic Panel. I believe very strongly in the unparalleled work of this treatment development program.
ONLINE GULF WAR ILLNESSES DISCUSSION GROUP
In 2009, I created one of the first Facebook pages focused on Gulf War Illness. It is a “closed” group that goes by the name of “Gulf War Illnesses”. Today this discussion group has an active membership of nearly 10,000 veterans, family members, and a few others interested in helping with our cause. As the sole administrator for the group, I personally screen each applicant who wishes to join to ensure it remains focused on our core mission – providing a private forum where ill Gulf War veterans feel free to share sensitive information about their battles with Gulf War Illness and other life challenges that often go hand in hand with chronic illness.
Members of the Gulf War Illnesses group also post frequent updates regarding ongoing Gulf War Illness research and news articles that are relevant to our cause. We have a number of very experienced individuals who offer free VA claims advice to other members. But most importantly, we provide a forum where veterans suffering from the debilitating symptoms of Gulf War Illness can find a sense of empathy, camaraderie, and mutual support any time of the day or night.
SUICIDES. Sadly, and more frequently than I would have expected, we sometimes lose members to suicide. Our group is fiercely loyal and protective of one another. Anytime a veteran posts comments that are indicative of possible suicidal ideations, you can rest assured that there will be an instant and incredible outpouring of support aimed at that veteran, including, if necessary, calls to local public safety officials asking that they conduct a welfare check on our veteran. Unfortunately, as hard as we try, we’ve not always been successful. We’ve lost far too many of our members to suicide. The vast majority of them were directly triggered by the sense of hopelessness that often follows a veteran’s notification from the VA that his or her claim has been denied. These tragedies must stop. Each and every veteran suicide is completely preventable. Only the Department of Veterans Affairs has the power to end this epidemic by improving the relevance of the healthcare they provide, reforming their claims processing, and by ensuring that every VA facility across this country is operating under the exact same protocols as every other VA facility, including healthcare facilities and VA Regional Offices where individual claims decisions are adjudicated.
SURVEY SHOWING VA AND IOM HAVE MISSED THE MARK. Very recently, I conducted an informal survey of sorts on the Gulf War Illnesses group about Gulf War veterans’ physical health concerns being dismissed by VA in favor of mental health referrals. The response to that question was rapid and voluminous. Within the first 24 hours, I had nearly 300 responses, the majority of which verified my suspicions that indeed, this problem – that Gulf War veterans with physical health issues are sent to VA mental health instead of addressing their physical health issues – is widespread and extremely common in just about every region within VA’s jurisdiction. In my opinion there is little doubt that this unethical practice is not just a Clinical Practice Guideline document written by DOD and VA officials, it has become standard operating procedure throughout the VA. Below is my question and a few of the responses:
“If you are a Veteran of the 1991 Persian Gulf War and are living with life-altering medical problems such as severe muscle or joint pain, profound fatigue, gastrointestinal dysfunction, chronic skin rash, cognitive difficulties, etc…..AND your complaints to VA Physicians have not been taken seriously, I have a question to ask you. Who among you, instead of being treated for your physical complaints at the VA have instead been referred for psychiatric or psychological treatment?”
- Veteran from Dallas, Texas – “Even though I am diagnosed with chronic fatigue (CF), Fibromyalgia, and IBS, just to name a few; The VA still only treats me for mental health. And if they do that to me, I can only imagine what they are doing to others. My doctors used to think I was just a complainer because I knew too much about GWI, now I am lucky if I ever see a doctor. All they ever give me is nurse practitioners, and I don’t know about you guys, but every time an NP checks me out, they spend all of their time trying to un-diagnose everything, and trying to tell me GWI is all in my head.”
- Veteran from Taylorsville, Kentucky – “I was actually told by VA that there were no validated reports of illnesses related to the Gulf War.”
- Veteran from Muskogee, Oklahoma – “During my last visit to the Muskogee VA ER I had a doctor inform me since they could not find anything in the X rays or blood test he was submitting a recommendation for mental evaluation and that Gulf War Illness was not real. …. If they have physical health conditions the doctors will minimize health issues because of the documented psychological problems and not do as many tests that may help them on down the road. I had many problems at Loma Linda VA. Most consults were denied. Eventually had to go outside VA for tests to prove conditions existed. I had to go through director to get MRI. The MRI showed severe deterioration condition. Need 2 surgeries. I believe most veterans will have real physical issues on down the road and will be managed by the less costly meds.”
- Veteran from Sturgis, Michigan – “All my diagnosis [sic] were done [by] my private pcp … VA did nothing for me. I have also been on Zoloft since 93 for my depression tried suicide twice so been a long hard road.”
- Veteran from Tallahassee, Alabama – “My late husband was referred for mental health testing six months or so before he passed in ’99…dismissed all his complaints.”
- Veteran from Springfield, Missouri – “My primary care provider says that my IBS, fatigue, sleep problems, etc. are all just PTSD. My deployment to [the Persian Gulf] was actually easier and more fun than stateside never had any traumatic experiences. Also I have never been diagnosed with PTSD, and the psychologist says I am not depressed, just frustrated with lack of help for my health problems.”
- Veteran from Korbel, California – “I finally went into the VA 3 years ago because I could no longer afford an outside physician to treat symptoms of GWI and was immediately referred to psych and diagnosed PTSD and given a slew of placating meds. Fortunately I had already failed off of most of them and was persistent and finally I am getting them to treat my IBS neuropathy and fibromyalgia.”
- Veteran from Duncan, Oklahoma – “Insomnia, chronic fatigue, skin rash, sleep apnea. And yes sent to the shrink and tried about 4 different medications each one [expletive] me up more than the previous. They said I was depressed within 5 minutes of appointment. The 2nd doc said I wasn’t depressed just had insomnia, prescribed trazadone, which was the very 1st med my primary Dr. Tried. Right back to square one. I quit going. And as far as sleep goes, I find listening to an audio book is better than any of the meds I was on.”
- Veteran from Conyers, Georgia – “My pcp told me she was [not] interested in my conspiracy theories, only my current health. X-rays put me in Phys therapy for my back. And she referred me to psych, where I was diagnosed with PTSD.”
- Veteran from Pine Island, Minnesota – “I was referred to mental health after having pulmonary and cardio work-up. When I started this time around (in 2013) I called to see what I needed to do to be seen for the fatigue and the nurse, this was when I actually was able to call the clinic and not triage, was honest enough to tell me that I would have to see MH to rule out those possibilities. The psychiatrist is the one who actually made the call on CFS. She is also the one who told me a year later that she wasn’t sure how I should be treated or what I wanted out of continuing seeing her. …. I think many in the VA have no idea what to do with undiagnosed, maybe [THEY] should be referred to MH to help them find out what is wrong with them that they cannot accept that the medical establishment has not been able to definitively establish a diagnosis.”
- Veteran from Hawthorne, Florida – “Gainesville VA, mental hygiene is all they offer. Make ya think you’re crazy. …. I’ll never walk [through] a VA again willingly.”
- Veteran from Geneva, Ohio – “I have but I can say that they put me on anxiety medication … that I have now been on for about 5 years and it has made some good changes for sleep for me but … my body still hurts all the time and have joint and back pain, … But still living with headaches almost daily as well and skin rashes with severe psoriasis and memory loss. Believe it or not as I’m writing this I have to stop for a bit to remember names of things that I have known for years, … this sucks especially when I have to ask my wife and she looks at me like “what the [expletive] is wrong with you” and I’m only 49.”
- Veteran from Louisville, Kentucky – “My pcp told me it was because I am depressed and had PTSD.”
- Veteran from Parkersburg, West Virginia – “When I first went to the local CBOC complaining of these issues I was referred to Psych. Later I was told all my problems were from PTSD.”
- Veteran from Topeka, Kansas – “I was already seeing psych for PTSD. Every visit I would tell her about my CFS, joint pain and migraines. She was the one that actually got me the physical appointments I needed.”
- Veteran from Northampton, Pennsylvania – “Have all the conditions mentioned, plus additionally shoulder pain from an injury in the service; tinnitus; lack of sleep …. Saw the same [VA] PCP for 10 years, who didn’t really take my complaints seriously …. Now seeing new PCP; rheumatology; psychologist; & psychiatrist – and NOW they are seeing things that were ignored for years. Never told to ‘see pysch’ for pain, it was just patently ignored for years. ….”
- Veteran from Zanesville, Ohio – “My issue has always been bad headaches that started in country in ’91, right around the time the war started. I [go] to the Columbus Oh VA hospital and local CBOC. They always circle around and end up putting me on mental health meds that do nothing for the headaches and only cause negative side effects that are much worse than the headaches alone. After a year of being on them I took myself off for this very reason only to be put right back on them for the very same reason. They just think they gave me the wrong type! I feel like I gotta go thru the motion to prove they are not the solution. I keep telling them that it is my sinuses causing them right now and finally got an allergy Doctor to listen enough to put me on a round of antibiotics and within a week it helped enough that my headaches are so much better now that I do not have to take my pain meds. After dealing w/headaches for 25 years I feel the doctors need to listen to what we feel is causing it and what the solution may be because I feel I know my body better than a doctor who is seeing me for the first time.”
- Veteran from Oak Grove, Kentucky – “I have been treated, well seen at the Nashville VA, since 1995 and have always been told “It’s all in my head” and Somatoform disorder. I have all the classic problems, PTSD, Joint pain, back pain, pain in all joints except hips. CFS, anxiety, major depression, fibromyalgia, Migraines though the migraines have gotten a lot better in the past few years. …. Have also been seen at [several DOD and VA programs], All of which resulted in [VA] trying to validate that it was all psychological / Somatoform disorder.”
- Veteran from Cincinnati, Ohio – “I was treated condescendingly at the Vet Center, got referred for psych help, and prescribed various drugs that only made things worse. Finally just quit trying, sucked it up, and just deal with it myself as best I can.”
- Veteran from Neola, Pennsylvania – “I was almost immediately referred to Pysch. It has taken years, and a major decrease in my physical ability, to get anything more than the minimum health care. Fill me up with pills and move on. Pysch only set me up with pain management. So on one hand they admit pain but on the other they won’t help.”
- Veteran from Hendersonville, Tennessee – “Nashville V.A. Primary care doc prescribed me gabapentin for my joint pain, especially in my shoulders neck and knees. I still have extreme cramps in my legs and calves and some serious muscle spasms, not to mention how bad my hands shake. The fatigue, insomnia depression and anxiety my doc couldn’t figure out so I was referred to the Shrinks.”
- Veteran from Cincinnati, Ohio – “Since I already have a [psych] doc my physical problems are ignored.”
- Veteran from Fort Worth, Texas – “I had a visit at the Fort Worth Clinic where they tried referring me to psych to “deal” with my pain but I basically cussed them out and shamed them then left for the Dallas VA only to be questioned as to whether I felt safe at home or not. It was a bad ordeal and they even put it in my records”.
- Veteran from Hampton, Virginia – “….My husband asked my PCP if he knew anything about the Gulf War Illnesses and he bluntly said NO. Where did they find these doctors?”
- Veteran from Parker, Colorado – “My pcp is vaguely familiar with it; don’t believe any [specialty doctors], GI, [for] example have any clue about GWI or that there was even a war fought. Let alone we are sick from it, Honestly I have a hard time bringing it up to any of them because of the look most of them give me when I have mentioned it to them, can’t help to ask why can’t there be some sort of flag like notice in med record that says something like “Vet is GWI Era possible or Confirmed GWI patient” then followed with instructions on how to proceed”.
- Veteran from Havelock, North Carolina – “My VA pcp is truly a lost cause. None of the VA providers here in the VISN-6 region have [any] clue. Since moving here to NC from KY I have had 3 VA providers. None of which knew anything about the GWS.”
- Veteran from Dunnsville, Virginia – “I have the same thing and they thought it was all in my mind at first but I kept complaining. As the time goes by the pain gets worse. I hurt and have a heart problem that they continuously ignore”.
- Veteran from London, England – “this is happening in the UK as well.”
- Veteran from Denver, Colorado – “I’m happy with my Denver VA provider. Treats the symptoms as best as he can and makes credible suggestions. Knowledgeable on GWI and doesn’t sum it up as mental.” –Veteran from southern Arizona – “You got lucky!”
CLAIMS ALSO AFFECTED. Not only are VA clinicians summarily dismissing the complaints of veterans suffering from extremely debilitating muscle pain, profound fatigue, chronic unexplained skin rashes, etc., VA seems to be following that exact same model for claims. For the veterans in this discussion group, it appears that if the veteran agrees to be seen by mental health professionals at the VA, it then seems like his or her chances of getting a disability claim approved are almost assured, whereas those who reject treatment by VA psychiatrists or psychologists seem more likely to have their claim denied. The following is a sampling of comments related to claims that various members of the Gulf War Illnesses Facebook page posted after I had asked the aforementioned question:
- Veteran from Muskogee, Oklahoma - “…. VA claims are easier for those claiming psychological (PTSD) issues but think it is bad for the veteran. If they have physical health conditions the doctors will minimize health issues because of the documented psychological problems and not do as many tests that may help them on down the road. ….”
- Veteran from Muscle Shoals, Alabama – “When I received my letter denying my claim for stomach cancer the nurse that did the evaluation said my cancer was caused by SAD. Severe Anxiety Disorder. I have never been diagnosed by any Psychiatrist or psychologist???”
- Veteran from Neosho, Missouri – “I’m rated 90 percent with IU, but all my complaints and gulf war illnesses were denied individually and all was put under PTSD, filed claim at mount Vernon, Missouri and regional office St Louis, so yeah they did it wrong, but not going to rock the boat when I got total and permanent.”
- Veteran from Coatesville, Pennsylvania – “Been seen for all and VA comes back and says not service related.”
- Veteran from Las Vegas, Nevada – “Tomah VA treated both mental health and primary care until the OIG Investigation had them on Administrative Leave. Then nobody treated me until I filed a Congressional Complaint and spoke to Carolyn Clancy…Nothing got done still with referrals after their negligence. A few months later the PCP agreed to PTSD inpatient, but again stone-walled by their staff so it would look like my denial was my fault. I have all of the diagnosis and claim is still pending while now being referred in Las Vegas for numerous medical treatments. They don’t acknowledge GWI here…then again they don’t anywhere.”
- Veteran from Allegan, Michigan - “In 1993 went to Los Angeles VA they pushed me through said nothing was wrong. In 2003 went to Phoenix VA same thing. In 2008 went to Sacramento VA was told I wasn’t eligible for benefits. 2011 I was diagnosed by civilian Dr. with ulcerative colitis. 2013 had BCIR surgery by civilian Dr. 2014 registered at the Chicago VA never made an appointment because people are just plain mean there. In 2015 went to Wyoming Michigan VA. They have yet to do anything about my headaches, fatigue and joint pain, went through the shrink thing made them stop. 9 months later and I received 100% disability just for ulcerative colitis, 50% PTSD.”
- Veteran from Topeka, Kansas - “I filed for undiagnosed illnesses of chronic fatigue and joint pain in 95. Denied for both but my VSO had added PTSD. (I was diagnosed with chronic fatigue and PTSD only at that time. ) I have now managed to get a listing dx of CFS.”
- Veteran from Oak Grove, Kentucky – “Only reason I kept going was because my claim was pending and if I didn’t, they would say, I “refused treatment”. Don’t think any of my ratings are considered service connected or not. Afraid to mess with it as I’m getting …. [100% Individual Unemployability] so I’m leaving it alone for now.”
- Veteran from Eads, Tennessee – “As soon as the VA read the words “stress” in my application for C& P for numerous ailments with unknown etiology from Desert Shield/Desert Storm I was sent to a psychologist at Memphis VA hospital for evaluation….you don’t need to hear what he wrote….I felt betrayed and haven’t been back since.”
Gulf War Illness is a physiological illness, period. That’s not just the opinion of this very ill veterans’ advocate and multi-year CDMRP participant, it is the opinion of hundreds of Ph.D’s and M.D.s who have studied Gulf War Illness over the past decade. These are highly skilled experts in the fields of science and medicine.
It’s long past the time when the self-serving interests of political operatives and defense contractors trump the medical and financial needs of the more than 200,000 of America’s 1991 Persian Gulf War veterans whose good health and ability to support their families is nothing more than a distant memory. This American tragedy must be brought to end, once and for all. History is watching, and everyone involved will be judged according to his or her actions, or inaction. Which side of history will you be on?
Very Respectfully Submitted,
David Keith Winnett, Jr.
Captain, United States Marine Corps (Retired)
Representing: Veterans for Common Sense
Home address: New Braunfels, Texas
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