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Statement on state of Gulf War veterans

Chairman Mitchell and Members of the Subcommittee, The American Legion would like to thank you for the opportunity to testify today and strongly appreciates the Subcommittee's commitment to addressing this issue. In many ways, this generation of wartime veterans can identify with the veterans of previous generations exposed to other environmental hazards, such as radiation and Agent Orange. This kinship comes from the suffering, hardships, and challenges they faced in dealing with the very government that placed them in harm's way.

As service members, veterans are trained to fight and defeat the enemy. For those Gulf War veterans with an array of medical conditions not easily diagnosed, they were not prepared for the battle ahead with both the Department of Defense and the newly-created Department of Veterans Affairs. Fortunately, these veterans had an ally -- The American Legion.

Today, The American Legion would like to address the cultural perception of Gulf War Illness: the research; the care (both medical and benefits wide); and finally the education and outreach to Gulf War veterans.

For Most: A Military Success Story

The Southwest Asian War was historic in many aspects. Each military operation from start to finish truly demonstrated the greatest military force the world had ever seen. Over a six month period, from August to February, the military buildup was textbook and unprecedented. The airpower unleashed in January of 1991 softened the Iraqi military and inflicted tremendous damage prior to what was predicted to be a major ground action. The "100-hour War" had no equal in the United States military history. Military losses were minimal. Clearly, noncombat injuries far outnumber the combat wounded on the battlefield. The anticipated threat of chemical or biological warfare never materialized. The multi-nation Coalition Forces, working in harmony, successfully freed Kuwait and confined Saddam Hussein within the Iraqi borders. Service members returned home from Operation Desert Storm to warm welcomes and parades.

For Others: An Adventure

Back home, thousands of National Guard and Reserve personnel were being federalized for deployment to augment their active-duty counterparts. That meant refresher training on such activities as Nuclear, Biological and Chemical (NBC) Warfare Protection; Decontamination Activities; Combat First Aid; Prisoner of War processing and confinement; Geneva Convention; Weapons Qualification; and physical training. Going through the mobilization for deployment meant medical and dental checkups; wills; powers of attorneys; cleaning and packing equipment; inoculations; medications; and more training. As unit after unit were deemed combat-ready, they were deployed.

When service members began arriving in Saudi Arabia, they found themselves in unfamiliar surroundings. Most were still wearing their "Woodlands Green" camouflage fatigues in the desert surrounding. Daytime temperatures soared and nighttime temperatures dropped. Diets changed according to locations. Some still had access to hot meals prepared in field kitchens or makeshift dining halls, while others began their Meals Ready to Eat daily regimen. Once in Saudi Arabia, service members began taking their malaria pills until their issued allotment was depleted.

Training resumed with increased emphasis on NBC conditions. Efforts to break the boredom resulted in volleyball, basketball, baseball or football games while wearing the protective mask, protective suits, protective boots, and protective gloves. Hydration was emphasized at every turn. Then there were the "other" shots, as prescribed (botulism and anthrax) and the additional medication (Pyridostigmine Bromide - PB) with or without instructions.

Some units were deployed to the desert locations living in "tent-cities," while others remained in quarters, such as Kobar Towers - an underutilized community house project built by the Saudi Arabian government for their nomadic citizens. At Kobar Towers, underground parking garages were converted into assembly areas, stores, call centers and dining facilities.

For Others: A Long Nightmare

Before long the environment began to change. Pesticides were used by the individual service members to repel insects - mostly flies and fleas. At times, a commercial sprayer (contracted) dispensed pesticides via a "fog machine" as it drove around the compound. Personal hygiene was emphasized depending on the location. In the desert, some had access to field showers - gravity-fed setups next to tanker trucks. Latrines were "cleaned" daily with the body waste normally burned off by use of diesel fuel. Kerosene stoves were often used inside the tents for heat at night. Small diesel generations provided power for lighting the tents. Much larger generators provided power for kitchens, dining areas, and recreational areas. In addition, garbage was disposed of in "pile it and burn it" landfills - little to no quality control over these burning activities - most were civilian operated.

Then the oil well fires began. The density of the smoke varied based on location from extremely heavy (blocked out the sun) to light (a haze). Wind direction also played a major role. When it did rain, there were times that the rain drops left spots on clothing and skin as it penetrated the clouds.

Chemical detection equipment was strategically dispersed on vehicles and on the ground to give early warning of the presence of chemical agents. Unfortunately, they seem to go off frequently, very frequently -- almost all the time. In fact, some service members just remained in their NBC protective clothing (except the mask and gloves) between alarm activations. It was almost a "crying wolf" situation - service members did not consider them reliable. It was reported that some were even disabled because of the repeated "false alarms."

Next SCUD missiles were launched, which were normally greeted by two Patriot missiles launched to intercept them. Explosion were impressive and debris was visible as it dropped from the sky and could be heard when they fell to the ground. The psychological impact of not knowing whether the SCUD missile was carrying a chemical or biological warhead weighed heavy on many service members. Each time a siren sounded, protective NBC gear was donned and worn until the all clear was announced. Unfortunately, the very last SCUD launched reportedly did the most damage. It hit a barracks not far from Kobar Towers, killing some National Guard and Reserve personnel from Pennsylvania.

So Why Am I Sick?

Not long after the war, The American Legion Service Officers began getting complaints from returning Gulf War veterans about medical problems they encountered either while in country or upon return from Southwest Asia. The symptoms were wide-ranging, but fatigue, joint pain, skin rashes, memory loss, and mood swings appeared to be met with a common diagnosis - "it is all in your head" or "it is stress-related" by both Department of Defense (DoD) and Department of Veterans Affairs health care professional. Some ill service members were prescribed medications such as Prozac or other mood altering drugs. Some service members were even accused of malingering.

Some service members going to VA medical facilities were told to go back to the Military Treatment Facility, but since they were no longer on active duty they were told to go back to the VA or their private health care providers. Those who went to private doctors were told to go to the VA or Military Treatment Facility because their medical conditions were clearly service-connected.

None of the health care providers denied that the symptoms existed; they just didn't know what was causing them and treatment was pretty much non-existent. Some were diagnosed as the flu - for months. Others were given anti-fungal medications proven to be ineffective. Frustration began to set in. Repeated complaints seem to fall on deaf ears, except family members who were also beginning to become very angry with the lack of answers or medical treatments. Veterans were only seeking medical treatment from health care professionals in the military, Veterans Affairs, and the private sector - getting few answers to the question "Why am I sick?" and little to no treatment.

Building of a Data Base

Soon The American Legion began compiling a list of ill Gulf War veterans. As our unofficial list grew, acting VA Secretary Anthony Principi authorized VA to begin collecting name on an initial Gulf War Registry - not treatment, no compensation - just begin collecting names. Once The American Legion had collected over 100 names, former Representative Joe Kennedy (MA) agreed to listen to the complaints of ill Gulf War veterans and their families. As a member of the Veterans' Affairs Committee, he held the meeting in this very hearing room. What started out as a meeting, ended up being a hearing chaired by the late Representative "Sonny" Montgomery. Veteran after veteran told his or her story, in some cases, the spouse had to speak on a veteran's behalf because of illness prohibited the veteran from attending. It became increasingly clear a much larger number of veterans were ill compared to what VA and DoD were reporting to Congress.

When other congressional hearings began, both DoD and VA agreed that there was no evidence of anything that would be making these service members sick. However, when one of the Members of Congress, Representative Steve Buyer (IN), showed them the medications he was taking since his return from the Gulf War, the tone of Congress, DoD and VA began to slowly change. Congress became more aggressive, while DoD and VA became more defensive. From this pivotal moment, the issue of Gulf War Illness became a national issue of concern.

Looking for the Silver Bullet

At this point, everyone was looking for the "cause" not the "solution." That remains the situation today, still looking for the "diagnosis" rather than "successful treatments." Among the first suspects was a disease called Leishmaniasis (a parasitic disease) since a few service members had actually been diagnosed with it, but that was ruled out as "the cause." Then the issue of depleted uranium (DU) surfaced, but it too was determined not to be "the cause." Then the inoculations, to include anthrax, were suspected, but they were also determined to be "safe." The PB pill became a new theory, which has not been completely ruled out at this point. Some pointed to the oil well fires or the diesel exhaust or poorly ventilated tents, but none seems to be the right cause.

In the Senate, the list of chemicals provided to Iraq by many different companies, including US companies reveals the very real possibility of the presence of a toxic chemical environment. That coupled with the thousands and thousands of "false alarms" by our military chemical detection equipment.

About this time, the question of possible low-level chemical exposure began to receive more consideration. While DoD definitively claimed that there was no presents of chemical on the battlefield, there were actually reports of detection of Sarin on the battlefield (a Marine FOX vehicle and a Coalition Forces chemical detection team). Then reports of the demolition of a munitions storage complex at Khamisiyah, by US service members was validated via video footage taken by an ill service member. "Seeing is believing." However, even this "suspect" after years of analysis was determined not to be the cause of undiagnosed medical conditions.

Seeking Health Care

From 1990 until 1996, access to care in the VA health care delivery system was strictly limited to service-connected disabled veterans and economically disabled veterans. Access to care was very confusing and complex. However, since 1996 more than 8 million veterans have enrolled in the VA health care delivery system and nearly 6 million are "unique patients." Unfortunately, by this time many ill Gulf War veterans seemed to have lost faith in VA's health care delivery system. Their biggest complaint was the lack of urgency, sincerity and compassion in dealing with their medical conditions. Both VA and DoD had created registries, but by this time, all Gulf War veterans were being added to the registries whether the veteran was ill or not.

However, to find the exact number of ill Gulf War veterans receiving treatment for their diagnosed medical condition would be a major challenge and results were extremely disheartening. Many of the initial Gulf War veterans seeking health care from VA for their undiagnosed medical conditions just walked away. Some went to private health care providers. Some just tried to accept their fate and suffer their pain in silence. The trust in VA was lost. The confidence is minimal.

The stigma of being an ill Gulf War veteran is real. There did not seem to be a standard protocol in dealing with these veterans by the system. Even as legislation was passed addressing undiagnosed illness, public law did not successfully translate into proper care and treatment of ill Gulf War veterans. Veterans searched for health care professionals who believe they were sick - whether in the public or private sector. Regrettably, there is still no treatment prescribed for ill Gulf War veterans.

Once a doctor described Gulf War illness as "being shot with a bullet made of ice. The damage is done, but the evidence has melted away. The absence of evidence doesn't mean that the evidence is absent."

"Placing Care Before Process"

Members of The American Legion were asked by the former Secretary of Veterans Affairs, James Peake, to serve on the Advisory Committee on Gulf War Veterans. The Advisory Committee produced a report entitled: "Changing the Culture: Placing Care Before Process." This title represents the collected thought of that Advisory Committee - America has an obligation to the men and women of the Armed Forces that exceeds the existing bureaucratic paradigm.

The American Legion would highly recommend you and your colleagues review the recommendations made by this Advisory Committee to VA Secretary Shinseki.

Nearly every Gulf War veteran who addressed the Committee addressed their frustration and dissatisfaction with the way they were initially treated - or mistreated - within VA. Veterans who were not easily diagnosed were treated as liabilities and pushed aside. We even learned of biases within the health care profession that found undiagnosed illness as simply a desire for disability compensation. If the answer is not obvious, quit looking or send them to mental health. Nearly every Gulf War veteran who appeared before the Advisory Committee had pretty much given up on VA ever making a diagnosis or providing treatment.

Had the medical conditions existed prior to deployment, most of symptoms ill Gulf War veterans identified would have likely made them "unfit for duty" and would have cancelled their deployment orders to Southwest Asia. Clearly, they would have probably been released from the Reserves or Nation Guard for being "unfit for duty." That is why the ill Gulf War veterans find it is so unacceptable -- that the failure of two Federal health care delivery systems to have failed returning veterans with such disregard.

Gulf War Veterans Illness Task Force (GWVI-TF)

The Gulf War Veterans Illness Task Force (GWVI-TF) recently published a report of their findings after a comprehensive review of all VA programs and services that serve the Gulf War cohort of veterans. The task force focused its efforts on veterans who were deployed to the Operation Desert Shield or Operation Desert Storm components of the 1990-1991 Gulf War period. However, as part of the task force charge to develop innovative and forward-looking solutions, it identified lessons learned from past practices and policy that can be applied to today's programs and services supporting the Operation Enduring Freedom/Operation Iraqi Freedom cohort.

Service-Connected Disability Ratings

One of the greatest concerns facing veterans from the Gulf War era who have filed for disability is that some veterans were continuing to suffer from symptom clusters that could not be attributed to known diseases or disabilities through conventional medical diagnostic testing and that these veterans were "falling through the cracks" within the current disability compensation scheme. The existing VA system of benefits was designed with a more traditional understanding of medical conditions, and was not initially equipped to deal with the unexplained illnesses that began to surface from Gulf War veterans.

Due in part to the recommendations of the GWVI-TF, rule-making is underway to add additional diseases to the list of those subject to the presumption of service connection based on qualifying Gulf War service. Based on evidence provided by the National Academy of Sciences on chronic diseases associated with service in Southwest Asia, additional rules to ensure that veterans can efficiently access the benefits they've earned may also be forthcoming. The American Legion stresses that the lessons learned from the long uphill battle faced by Vietnam veterans in dealing with the aftereffects of the herbicide Agent Orange must continue to be implemented with the new spate of conditions resulting potentially from environmental hazards. As is the case with Agent Orange, research must be continuously examined, and where sound medical principles support the addition of new presumptive conditions or new understandings of existing conditions VA must adjust their procedures to ensure these veterans receive equitable benefits.

Recently, the VBA Compensation and Pension (C&P) Service has developed two training letters designed to inform and instruct regional office personnel on development and adjudication of disability claims based on Southwest Asia service. Training Letter 10-01, titled "Adjudicating Claims Based on Service in the Gulf War and Southwest Asia", was released on February 4, 2010. This training letter provides background information on the Gulf War of 1990-1991, and explains the initial 1994 and subsequent 2001 legislation found in Title 38 United States Code, Section 1117, which was a response to the ill-defined disability patterns experienced by returning Gulf War veterans. It explains the terms "undiagnosed illness" and "medically unexplained chronic multi-symptom illness" used in the legislation, and stresses that service connection may be granted for other diagnosed chronic, multi-symptom illness in addition to chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome, which are identified as examples in the legislation. It also provides step-by-step procedures for procuring supporting evidence and for rating a disability claim based on Southwest Asia service under Section 3.317 of the Code of Federal Regulations.

The training letter includes a separate memorandum to be sent with the VA medical examination request so that examiners are informed of the issues related to qualifying chronic disabilities and better able to evaluate a Gulf War veteran's disability pattern. Here, The American Legion cannot state more firmly that coordination between VBA and VHA elements in the understanding of these disorders must be consistent. All too often in American Legion Quality Review visits to Regional Offices, we see apparent disconnect between VBA and VHA elements in the claims process. Without a full understanding by both sides of the equation, veterans' claims will suffer from poor interpretation and these veterans will continue to slip through the cracks.

VA is additionally providing information on environmental hazards in Iraq and Afghanistan, as well as other areas, and is working in close coordination with DoD. This should enhance the understanding of environmental hazards associated with Gulf War and Southwest Asia service outside of the original Gulf War. They are discussing airborne toxic substances resulting from the widespread use of burn pit fires to incinerate a variety of waste materials in Iraq and Afghanistan, as well as hexavalent chromium contamination at the Qarmat Ali water treatment plant in Basrah, Iraq, from April through September 2003.

With regard to the growing understanding of these environmental contaminations, not only overseas but also with regard to situations such as the groundwater contamination at Camp Lejeune in North Carolina, The American Legion's Comprehensive Resolution on Environmental Exposure could not be more clear: veterans must be provided examinations and treatment which is thorough and appropriate, and that all necessary action be taken by the Federal government, both administratively and legislatively as appropriate, to ensure that veterans are properly compensated for diseases and other disabilities scientifically associated with a particular exposure. This requires close monitoring of the development of all ongoing research on the long-term effects of all environmental exposures and point out to the proper officials any perceived deficiencies or discrepancies in these projects; and ensuring that government committees charged with review of such research are composed of impartial members of the medical and scientific community.

Education and Outreach

The American Legion continues to encourage ill Gulf War veterans to seek timely access to quality health care within VA through numerous venues - pamphlets, articles in The American Legion Magazine, Department Service Officers, and word of mouth. In 1996, with enactment of eligibility reform, The American Legion aggressively encouraged all veterans to enroll in the VA health care delivery system. Enrollment quickly grew yet still many ill Gulf War veterans continued to resist returning to VA medical facilities.

VA's outreach was limited to a sporadic publishing of a periodical entitled the Gulf War Review and information on their website. Each provides updates as to developments on Gulf War illness related issues.

VA has moved forward to some extent with increased internal education of their medical and benefits related staff; however the mission of increasing understanding of the medical factors involved for the actual veterans who have served still lags far behind what is necessary. Veterans Service Organizations must pick up the slack with their own advocacy efforts. To be sure, The American Legion is positioned well within the community to provide information to veterans through materials such as our pamphlets on "Gulf War Era Benefits & Programs", and our Department Service Officers are trained annually to ensure the information they provide to veterans is the most current. However, actions such as these do not void VA's responsibility to provide this information directly to veterans. All too often when we are able to convey information to veterans, the response we receive is that this is the first time they have heard much of the material. This cannot be allowed to happen. This information should come straight from the horse's mouth to the veteran. VA cannot continue to rely on veterans' groups as the near sole provider of this valuable information to our nation's veterans.

Conclusion

The most revealing comment we have heard from the ill Gulf War veterans that we have talked to was their answer to one simple question, "If you had it all to do over again and your unit was deployed to the Persian Gulf, would you go?"

The answer was unanimous - "Absolutely!"

Mr. Chairman and Members of this Subcommittee, these young men and women did not fail us - we, as a nation, have failed them. However, we continue to be engaged on this battlefield and the battle is not lost. VA must move forward to elevate their attention to these conditions in a manner that learns the hard lessons of the battle against Agent Orange-related disease. The time to act is sooner, not later. The more aggressively we attack this problem in the now, the less we will struggle with solutions in the future.

 

ceanthony

February 6, 2011 - 9:24pm

The sad part about all this is the benefits lost because no new evidence could be presented each year. The claim closes out and there is nothing you can do.

A lot of us suffer still today, and if it doesn't get worse you have no new evidence, and it doesn't make a difference if the illness is debilitating. If VA doesn't accept the illness as military related you lose. It's as if VA expects you to make your own diagnosis.

timstdy

October 11, 2011 - 3:31pm

I am sorry to say that I have seen a large variance of care and Disability processing since moving into the St. Petersburg area of responsibility. The care I received while living in Omaha, NE compared to Eglin Outreach Clinic is night and day. I had a Mental Health doctor involuntarily commit me to a Psych ward to cover up their mistake of removing me from all medication without tapering off that med while starting a new one. This after I begged that doctor to help me in the clinic and stated that I would voluntairly go into a hospital so I could get properly medicated. BIG difference between voluntary and non-voluntary! Then there is the problem of claims processing. 14 months and nothing from VA. Omaha claims took 4 months on two occasions. Right now I am just disgusted with the whole VA system here.

pljamesGWI1991

March 18, 2012 - 12:09am

My GWI symptoms of neck/joint pain, chronic fatigue, memory loss have been pushed aside by the VA, and the PB pills and vaccinations I took are not listed in my medical records. Because my illness has been progressive and did not see doctors until 2001 the VA claims I cannot get compensation. I tried to get seen by a VA facility in 1999, but since I had medical insurance through work they would not see me and again pushed me aside. Now I have been unable to work for two years due to GWI and Hodgkin's Cancer. Can we get some help for our Gulf War brothers who suffer tremendous pain daily and who have been told it's in our heads by private doctors and given depression meds. All of us are not depressed we suffer true pain. Please don't let the VA push our claims aside

jeunesse reserve

October 27, 2013 - 6:35pm

The resource that you mentioned here is something that I have been looking from quite a time. And finally it ended with such a nice blog post. Don’t have words to thank you.

Rick Groover

February 26, 2014 - 12:07am

I was in Saudi at the end of the war as a volunteer from the Florida National Guard and I am receiving some disability but only 40%. I have not been able to work for over 2 years and I am finding very difficult to find any records of me being over there. It seems that any information that there was either was lost or was not put in my files for record. The VA does not care about my situation. I have asked Sen. Bill Nelsons office for some help but I have not received any yet. Can someone please help me.

Carolyn Moore

July 10, 2014 - 4:08pm

What help is there for the non deployed National Guard Gulf War Veterans? I am very ill and doc says that I am totally disabled with multiple different illness and etc that does not run in my family but match GWS/GWI that is including a spec scan of my brain that shows damage...I went into basic and AIT from Jan 91 - Aug 91 and in that time frame I got 2 sets of shots..the second set they said were for deployment if we were sent..I started having problems after the shots and then I cleaned contaminated equipment from some of the first round of soldiers coming home and yes was informed that what was on the equipment was making the soldiers sick...I have not been able to work since 2002 and am housebound..I went to the VA in 2009 and they told me that National Guard was nothing and going to get nothing and refused to let me see a doc and would not even take my DD-214 or the form I had filled out...I need help please
Thankyou

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