[House Hearing, 111 Congress] [From the U.S. Government Publishing Office] GULF WAR ILLNESS: THE FUTURE FOR DISSATISFIED VETERANS ======================================================================= HEARING before the SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS of the COMMITTEE ON VETERANS' AFFAIRS U.S. HOUSE OF REPRESENTATIVES ONE HUNDRED ELEVENTH CONGRESS SECOND SESSION __________ JULY 27, 2010 __________ Serial No. 111-94 __________ Printed for the use of the Committee on Veterans' Affairs
U.S. GOVERNMENT PRINTING OFFICE 58-061 WASHINGTON : 2011 ___________________________________________________________________________ For sale by the Superintendent of Documents, U.S. Government Printing Office, http://bookstore.gpo.gov. For more information, contact the GPO Customer Contact Center, U.S. Government Printing Office. Phone 202-512-1800, or 866-512-1800 (toll-free). E-mail, [email protected] COMMITTEE ON VETERANS' AFFAIRS BOB FILNER, California, Chairman CORRINE BROWN, Florida STEVE BUYER, Indiana, Ranking VIC SNYDER, Arkansas CLIFF STEARNS, Florida MICHAEL H. MICHAUD, Maine JERRY MORAN, Kansas STEPHANIE HERSETH SANDLIN, South HENRY E. BROWN, Jr., South Dakota Carolina HARRY E. MITCHELL, Arizona JEFF MILLER, Florida JOHN J. HALL, New York JOHN BOOZMAN, Arkansas DEBORAH L. HALVORSON, Illinois BRIAN P. BILBRAY, California THOMAS S.P. PERRIELLO, Virginia DOUG LAMBORN, Colorado HARRY TEAGUE, New Mexico GUS M. BILIRAKIS, Florida CIRO D. RODRIGUEZ, Texas VERN BUCHANAN, Florida JOE DONNELLY, Indiana DAVID P. ROE, Tennessee JERRY McNERNEY, California ZACHARY T. SPACE, Ohio TIMOTHY J. WALZ, Minnesota JOHN H. ADLER, New Jersey ANN KIRKPATRICK, Arizona GLENN C. NYE, Virginia Malcom A. Shorter, Staff Director SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS HARRY E. MITCHELL, Arizona, Chairman ZACHARY T. SPACE, Ohio DAVID P. ROE, Tennessee, Ranking TIMOTHY J. WALZ, Minnesota CLIFF STEARNS, Florida JOHN H. ADLER, New Jersey BRIAN P. BILBRAY, California JOHN J. HALL, New York Pursuant to clause 2(e)(4) of Rule XI of the Rules of the House, public hearing records of the Committee on Veterans' Affairs are also published in electronic form. The printed hearing record remains the official version. Because electronic submissions are used to prepare both printed and electronic versions of the hearing record, the process of converting between various electronic formats may introduce unintentional errors or omissions. Such occurrences are inherent in the current publication process and should diminish as the process is further refined. C O N T E N T S __________ July 27, 2010 Page Gulf War Illness: The Future for Dissatisfied Veterans........... 1 OPENING STATEMENTS Chairman Harry E. Mitchell....................................... 1 Prepared statement of Chairman Mitchell...................... 38 Hon. David P. Roe, Ranking Republican Member..................... 2 Prepared statement of Congressman Roe........................ 38 Hon. Zachary T. Space............................................ 3 WITNESSES U.S. Department of Veterans Affairs: Hon. Charles L. Cragin, Chairman, Advisory Committee on Gulf War Veterans............................................... 18 Prepared statement of Mr. Cragin........................... 54 John R. Gingrich, Chief of Staff............................. 30 Prepared statement of Mr. Gingrich......................... 61 ______ American Legion, Ian C. de Planque, Deputy Director, Veterans Affairs and Rehabilitation Commission.......................... 6 Prepared statement of Mr. de Planque......................... 43 Hauser, Stephen L., M.D., Professor and Chair of Neurology, University of California, San Francisco, School of Medicine, and Chair, Committee on Gulf War and Health: Health Effects of Serving in the Gulf War, Update 2009, Board on the Health of Selection Populations, Institute of Medicine, The National Academies...................................................... 20 Prepared statement of Dr. Hauser............................. 56 Research Advisory Committee on Gulf War Veterans' Illnesses, James H. Binns, Chairman....................................... 23 Prepared statement of Mr. Binns.............................. 59 Veterans for Common Sense, Paul Sullivan, Executive Director..... 8 Prepared statement of Mr. Sullivan........................... 49 Veterans of Modern Warfare, Donald D. Overton, Jr., Executive Director....................................................... 4 Prepared statement of Mr. Overton............................ 39 SUBMISSIONS FOR THE RECORD Disabled American Veterans, Adrian Atizado, Assistant National Legislative Director, statement................................ 67 Desert Storm Battle Registry, Crawford, TX, Kirt P. Love, Director, statement............................................ 76 Gold Star Wives of America, Inc., Vivianne Cisneros Wersel, Au.D., Chair, Government Relations Committee................... 77 National Gulf War Resource Center, James A. Bunker, President, letter......................................................... 80 National Vietnam and Gulf War Veterans Coalition, Major Denise Nichols, RN, MSN, USAFR (Ret.), Vice Chair, statement.......... 81 Research Advisory Committee on Gulf War Veterans' Illnesses, Anthony Hardie, Member, Gulf War Steering Committee, U.S. Department of Veterans Affairs; and Gulf War Illness Research Program Integration Panel, Congressionally Directed Medical Research Program, U.S. Department of Defense, statement........ 85 MATERIAL SUBMITTED FOR THE RECORD Post-Hearing Questions and Responses for the Record: Hon. Harry E. Mitchell, Chairman, and Hon. David P. Roe, Ranking Republican Member, Subcommittee on Oversight and Investigations, Committee on Veterans' Affairs, letter dated July 28, 2010, and VA responses...................... 89 GULF WAR ILLNESS: THE FUTURE FOR DISSATISFIED VETERANS ---------- TUESDAY, JULY 27, 2010 U.S. House of Representatives, Committee on Veterans' Affairs, Subcommittee on Oversight and Investigations, Washington, DC. The Subcommittee met, pursuant to notice, at 10:08 a.m., in Room 334, Cannon House Office Building, Hon. Harry E. Mitchell [Chairman of the Subcommittee] presiding. Present: Representatives Mitchell, Space, Walz, and Roe. OPENING STATEMENT OF CHAIRMAN MITCHELL Mr. Mitchell. Good morning, ladies and gentlemen. The Committee on Veterans' Affairs' Subcommittee on Oversight and Investigations' hearing on Gulf War Illness: The Future of Dissatisfied Veterans will come to order. This meeting is held on July 27, 2010. I ask unanimous consent that all Members have 5 legislative days to revise and extend their remarks and that statements may be entered into the record. Hearing no objection, so ordered. Last year, this Subcommittee held two hearings on Gulf War Illness. Our first gave us an overview of the purpose, research, and methodology that the U.S. Department of Veterans Affairs (VA) utilized to determine the parameters relating to Gulf War Illness. Our second hearing evaluated the scientific information and analyzed the different schools of thought on Gulf War Illness research. In both of these hearings, it has become clear that veterans are suffering from symptoms related to service in the Gulf and that they are continuing to struggle for the health care, treatment and benefits they deserve. For our third, and hopefully final, hearing today, we will hear from the Department on how they plan to move ahead and implement the culture, care, benefits, research, outreach, and education efforts for our Gulf War veterans. Next month will mark the 20th anniversary since the United States deployed almost 700,000 troops to the Persian Gulf. With a growing number of these veterans developing undiagnosed and multi-symptom illnesses, they have looked to the people who promised them the care worthy of their sacrifice when they returned home. Still to this day, many of our Gulf War veterans have yet to see this care and are finding themselves fighting the VA for service-connected claims and proper compensation. Under the new leadership of Secretary Shinseki, a new vision and a new mission has been created at the Department. I know that Members on both sides of the aisle are eager to see how the VA will use this new vision to ensure that our veterans are receiving the best possible care. As part of this new vision, Secretary Shinseki's creation of the Gulf War Veterans Illness Task Force in 2009 is bold and shows the Department's dedication to our Gulf War veterans. However, with this new task force, we need to begin to see results. Even though the VA has put forward motions to better serve our veterans, it is not a substitute for results. We all understand the arduous task of ensuring that the proper research and data is collected, but our veterans have waited too long. While I appreciate the VA's attempt to change the culture at the Department regarding Gulf War Illness, there must also be strides to change the care and compensation these veterans have waited so long for. The Department of Veterans Affairs is the second largest agency in our system of government and they must be held accountable for the timely care of our Nation's veterans. There is a culture of complacency that does not serve anyone, especially our men and women in the Armed Forces. VA needs to take action to begin to implement a plan to provide transparency and answers to our Gulf War veterans. Without a unified central VA effort to provide appropriate care to this population, these veterans and their families will have to wait that much longer and grow that much sicker. I trust that this hearing will begin to lay out a unified plan for the care of our Gulf War veterans as well as instill hope that these veterans are not forgotten and that the promises we made to care for them are kept. Before I recognize the Ranking Republican Member for his remarks, I would like to swear in our witnesses. [The prepared statement of Chairman Mitchell appears on p. 38.] Mr. Mitchell. I would ask that all witnesses stand from all panels and raise their right hand. [Witnesses sworn.] Mr. Mitchell. Thank you. Now I recognize Dr. Roe for opening remarks. OPENING STATEMENT OF HON. DAVID P. ROE Mr. Roe. Thank you, Mr. Chairman. And I noticed in the back of the room here, we have some guests. The Boy Scouts are having their 100th anniversary. I being an Eagle Scout would like to welcome you to our hearing today and thank the leaders for the leadership that you give these young men. Thank you for being here. Thank you, Mr. Chairman. It is fitting as we approach the 20th anniversary of the start of Operation Desert Storm and the beginning of the Gulf War that we proceed with this final hearing in our three-part series on Gulf War Illness. On this day, it is important for us to look to the future of care for our veterans who fought and served in this conflict and now suffer from various illnesses from unknown causes. I believe it will be interesting to listen to the views of each of the panels and what they perceive is the cultural perception of Gulf War Illness as well as both the medical and benefit side of the equation on the care for these veterans. On April 9th, 2010, the Institute of Medicine (IOM) issued its most recent report on Gulf War and health which made additional recommendations on how we can best support the veterans from this conflict. I look forward to hearing from Dr. Hauser who Chaired the Committee on Gulf War and Health, Health Effects of Serving in the Gulf War on how the VA can use the information in this report to improve care to these veterans and also to hear what progress VA has made since we last met in July. I am curious to hear the VA's response to the Research Advisory Committee's (RAC) September 2009 report and what changes are coming about as a result of our hearings as well as the Advisory Committee's report. We must never forget the reason that we are having these hearings. It is to help our Nation's veterans. In the past, we have explored the research behind presumptions, the medical indicators leading to the diagnosis or lack thereof and we learned most importantly that the documentation of undiagnosed illnesses is a large contributor leading to a presumption of Gulf War Illness. I believe we can use the information we have compiled through these hearings to really come to a better understanding of Gulf War Illness and through that knowledge better serve these veterans who have sacrificed so much for our country. The information gleaned from the upcoming report from the Secretary's Gulf War Veterans Illness Task Force as well as the reports issued by the Research Advisory Council and the Institute of Medicine will help us serve those veterans from the Gulf War. It is my hope that we will also take the lessons learned through these hearings as well as the reports and apply them to the current Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF) veterans and future veterans down the road to better serve their needs. I am pleased that the VA Chief of Staff, John Gingrich, has brought with him representatives from both the Veterans Health Administration (VHA) and the Veterans Benefits Administration (VBA) who can respond to the type of care and benefits being provided to our Gulf War veterans. And I look forward to the hearing and the testimony of all witnesses. And, again, Mr. Chairman, thank you for holding this hearing. [The prepared statement of Congressman Roe appears on p. 38.] Mr. Mitchell. Thank you. Mr. Space. OPENING STATEMENT OF HON. ZACHARY T. SPACE Mr. Space. Thank you, Mr. Chairman. I want to thank the witnesses for coming and talk about this topic of immense importance to our veterans. Gulf War Illness is a serious issue plaguing thousands of veterans in this country. And I sincerely hope that this hearing will bring to light steps that the VA is and has been taking in working for the best quality care for the men and women who fought in the Gulf War. For years, the seriousness of this condition was unfortunately overlooked because of the lack of understanding. I want to commend Secretary Shinseki for dedicating new resources to redefine how veterans suffering from Gulf War Illness are compensated and to begin getting them the services they need. This war has been over for 19 years. And I believe that the VA is finally on the right track toward alleviating the source of the debilitating effects that the Gulf War has had on our veterans. I encourage the Veterans Administration to continue taking all steps necessary to provide assistance for veterans suffering from this illness and I would like to ensure that we will do all we can to make the necessary tools available to you so that you can fulfill your mission in taking care of our Nation's heroes. And with that, I yield back. Thank you, Mr. Chairman. Mr. Mitchell. At this time, I would like to welcome panel one to the witness table. Joining us on our first panel is Donald Overton, Jr., Executive Director for the Veterans of Modern Warfare (VMW); Ian de Planque, Deputy Director of the Veterans Affairs and Rehabilitation Commission for the American Legion; and Paul Sullivan, Executive Director for the Veterans for Common Sense (VCS). I ask that all witnesses stay within 5 minutes of their opening remarks. Your complete statements will be made part of the hearing record. I would like to recognize Mr. Overton. STATEMENTS OF DONALD D. OVERTON, JR., EXECUTIVE DIRECTOR, VETERANS OF MODERN WARFARE; IAN C. DE PLANQUE, DEPUTY DIRECTOR, VETERANS AFFAIRS AND REHABILITATION COMMISSION, AMERICAN LEGION; AND PAUL SULLIVAN, EXECUTIVE DIRECTOR, VETERANS FOR COMMON SENSE STATEMENT OF DONALD D. OVERTON, JR. Mr. Overton. Thank you, Chairman Mitchell, Ranking Member Roe, and distinguished Members of the Subcommittee on Oversight and Investigations. On behalf of Veterans of Modern Warfare, a 501(c)(19) National Wartime Veteran Service Organization, I thank you for the opportunity to present our views on Gulf War Illness: The Future for Dissatisfied Veterans. My name is Donald Overton and I testify today from a dual perspective, first as Executive Director for VMW, also as a 100 percent service-connected combat-disabled veteran of the first Gulf War. Nearly 20 years have passed since the start of the deployment and combat operations. Since then, an estimated 250,000 veterans of our conflict have endured adverse health consequences and suffer from the potentially debilitating consequences of undiagnosed multi-symptom illness. We contend these are distinct illnesses and the large numbers of veterans affected have been disenfranchised and under-served by the Department of Veterans Affairs. To date, VA has historically failed to recognize our conditions, opting to emphasize stress or other psychiatric disorders in its research funding, clinician training materials, and public statements, although scientific research clearly indicates otherwise. We must work with due diligence in order to stop allowing the lives of Gulf War veterans to be stolen and make no mistake about it, that is exactly what is taking place. Last year, the VA impeded, and then canceled, a Congressionally mandated contract for unparalleled Gulf War Illness research at the University of Texas Southwestern (UTSW). This year, VA used those funds to buy an $11 million piece of lab equipment of dubious value to Gulf War veterans. The recent announcement by VA to fund yet another stress management study and portray it as somehow providing meaningful treatment to Gulf War veterans is discouraging. VMW urges Congress to work with the VA to reinstate the UTSW study, which would be highly regarded by all Gulf War veterans as well as advancing funding towards effective treatments of Gulf War Illness. The area of greatest controversy for Gulf War veterans remains our inability to obtain disability compensation. Currently there are only three ill-defined presumptive conditions for Gulf War veterans, chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome. Our written testimony clearly illustrates the contorted rules Gulf War veterans face regarding these disability claims. VMW urges Congress to consider expanding VA regulations which could authorize extra scheduler ratings for Gulf War veterans suffering from undiagnosed multi-symptom illness. Clearly defining the conditions, which constitute undiagnosed illness as well as preventing generic labeling of conditions based on closely-related symptoms must be mandated. Additionally, VMW urges Congress to enact legislation granting indefinite presumptive eligibility for undiagnosed illness. Please consider removing all sunset provisions in title 38 of the United States Code at sections 1117 and 1118 so health care and benefits are for the life of every Gulf War veteran and every surviving beneficiary. VMW strongly endorses granting a presumption of service- connection for our Gulf War veterans who deployed to the war zone and are diagnosed with autoimmune diseases such as multiple sclerosis and Parkinson's disease based on their unusual prevalence amongst our cohort. Establishing tiger teams within the Veterans Benefits Administration comprised of highly-trained environmental exposure claims specialists would expedite and enhance the myriad claims-related issues plaguing the Agency. Due to significant limitations in the VA's Gulf War Veterans Information System, it is extremely difficult to accurately portray the experiences of Gulf War veterans, let alone our respective disability claims or health care issues. Based on this fact, it would appear that the recently completed Gulf War Veterans Illness Task Force report was based solely on the presumptions of task force members which unfortunately limits the credibility of the report's findings. Overcoming the VA's established culture towards Gulf War veterans will not be an easy task, but under Secretary Shinseki's bold leadership and cultural transformation, it can and must be accomplished now. Acknowledging the relevance of Gulf War veterans within VA would serve to reinvigorate research and medical care. Enhancing education of benefits counselors, medical staff, and various stakeholders will serve to increase the effectiveness of this cultural transformation. Gulf War veterans swore by a common creed as do all members of our Armed Forces to leave no one behind. We are proud to proclaim we left no one behind. Unfortunately, our country has abandoned us. Those charged with our care and well-being continue to neglect us. We have been lost in the shuffle. Now our fate rests in the hands of Congress, in your hands. Please help us as we continue to struggle to get all the way back home after our military service. Mr. Chairman, VMW thanks you for this opportunity to express our views today and we will be pleased to answer any questions you or your distinguished colleagues may have. Thank you. [The prepared statement of Mr. Overton appears on p. 39.] Mr. Mitchell. Thank you. Mr. de Planque. STATEMENT OF IAN C. DE PLANQUE Mr. de Planque. Good morning, Mr. Chairman and Members of the Committee. I would like to thank you on behalf of the American Legion for the opportunity to testify today on the future of this Nation's policy towards Gulf War veterans. Traditionally, servicemembers are called upon to place themselves in hazardous situations to protect our country. While it is easy to think of these hazards in simple terms of bullets and bombs, over the last half of the previous century, we have learned many hard lessons about the environmental hazards faced as well. Of course, these are not new lessons. On the battlefields of World War I, the world learned lessons about the terrifying effects of chemical weapons. Through World War II and the Cold War, we slowly began to understand the devastating effects of ionizing radiation. Over 40 years after the Vietnam War, we still struggle to keep pace with the after effects of the chemical herbicide Agent Orange. Throughout this time, the American Legion has fought for a better understanding of these effects and to ensure that those veterans affected by these hazards receive the treatment and compensation that is their due for their service under these conditions. Throughout history when soldiers have gone to war, the mission comes first and little thought is given to the after effects. Complete the mission, engage and destroy the enemy, these are the driving motivations of war fighting. Whatever tools exist at our disposal are employed to that end and it is only later in retrospect that we begin to understand the impact that will resonate throughout the lives of these veterans. To this end, the American Legion supports several considerations for these Gulf War veterans. The current presumptive period for Persian Gulf War undiagnosed illnesses under title 38 of the Code of Federal Regulations, section 3.317 will expire on January 1st, 2012. It is well within appropriate authorities to extend this deadline and the American Legion recommends extending this period indefinitely. As has been shown through the hard lessons still being learned with relation to Agent Orange, medical science will continue to identify and isolate new conditions as after effects of exposure to environmental hazards. There stands no reason that an arbitrary period should be enforced for the cessation of these presumptive periods. An indefinite period will ensure that research of the effects of the Gulf War will continue to provide meaningful treatment and compensation to these veterans. Perhaps most concerning is the finding of the Research Advisory Committee on Gulf War Veterans' Illness November 2008 report that, ``The Federal Gulf War research effort has yet to provide tangible results in achieving the ultimate objective, that is to improve the health of Gulf War veterans.'' This must be the driving goal of our government's efforts. To this end, the American Legion recommends several parts to an attack to achieve this goal. First, we fully support robust funding for scientific research to continue to track the effects of Gulf War exposure. Sound scientific study is the priority to develop a medically- based understanding for the treatment of these veterans. Continued funding for all research in this area must remain a top priority. Second, the American Legion encourages the VA to continue to provide appropriate medical examinations and treatment including follow-up treatment to all veterans of the Gulf War who report signs or symptoms that may be associated with diseases endemic to that war region and other conditions related to the experience. To this end, the American Legion has long advocated for Congress to reinstate Gulf War veterans' status in Priority Group 6 for medical treatment. Eligibility for Gulf War veterans in Priority Group 6 of the Department of Veterans Affairs health care system established by the Veterans Healthcare Eligibility Reform Act of 1996 expired in 2002. Although VA has continued to treat ill Gulf War veterans despite the expiration of its authority to do so, lack of Congressionally-mandated authority to treat these veterans could mean abrupt discontinuation of the treatment that is currently available. Continuation of care for ill Gulf War veterans would provide invaluable data that could be used to examine the nature of Gulf War Illness, provide for better care for all other Gulf War veterans, and provide preparation for treatment of future servicemembers who may become ill after deployments in the southwest Asia theater of operations. As a final note, the American Legion wishes to stress that there are growing concerns regarding the specific Gulf War effects on women veterans and research into these areas must not fall by the wayside. Because the health concerns of women can in some cases differ from a more generalized conception of veterans, research must ensure that these areas are specifically addressed and remain a fundamental part of Gulf War Illness analysis. As always, the American Legion thanks the Committee for the opportunity to provide testimony today and we would be happy to answer any questions the Committee may have. And we would like to add one final note. As I mentioned earlier, we stand 40 years, over 40 years after our deployments to Vietnam and we are still struggling with the after effects of Agent Orange. We are now looking at 20 years with continued deployments to the Gulf War theater of operations. The clock is ticking for these veterans and we cannot afford to make the same mistakes we did with Agent Orange. Thank you. [The prepared statement of Mr. de Planque appears on p. 43.] Mr. Mitchell. Thank you. Mr. Sullivan. STATEMENT OF PAUL SULLIVAN Mr. Sullivan. Veterans for Common Sense thanks Subcommittee Chairman Mitchell and Ranking Member Roe, and Members of the Subcommittee for inviting us to testify here today. VCS is here to present our recommendations for improving VA policies for our Nation's 250,000 ill Gulf War veterans. Before I begin, I want to recognize Steve Robinson, a fellow Gulf War veteran, in the audience, Thomas Bandzul, our Associate Counsel, and with me is my daughter, Megan, to learn how Washington works. Why are we here today, Mr. Chairman? We are here today because Gulf War veterans are deeply dissatisfied and disappointed with VA staff actions for the past 2 years. We concur with the comments of Veterans of Modern Warfare and the American Legion and their specific points and much of them are repeated in our written statement, so I am going to cut those parts out of my oral testimony to focus on a couple of new things. Let me put this to you simply, Mr. Chairman. VA staff does not listen to our concerns. VA staff does not listen to advisory panels or expert scientists. VA staff does not even listen to Congress. VA staff actions for about the last 20 years have been, and remain, disastrous for our veterans. I am here today sending up a red star cluster. That is an emergency. That is a warning. VCS is urging VA's new leadership here in the room today to stop and listen to the veterans, as you pointed out, before time runs out. Why, sir? It is because VA's bureaucratic delays are slowly killing us veterans. The mismanaged research prevents us from finding answers about why we are ill and obtaining care. Today, VCS officially petitioned VA to issue regulations so our 250,000 Gulf War veterans can learn why we are ill, obtain medical care, and receive the disability benefits that we need for our conditions linked to service in the Gulf War. The two things we do not want, Mr. Chairman, are more false promises and more stress research from VA. Today if VA's Chief of Staff, who is here today, fails to deliver assurances to veterans and this Subcommittee that VA will begin comprehensive research and reform, then VCS is asking you here today to take action. Why are we making such specific requests in our petition to VA and to this Subcommittee? It is pretty clear. We have waited 20 years for answers about why we are ill, for treatment, and for benefits. We will no longer tolerate waiting and watching our friends die. I have been to too many funerals, listened to too many of my friends talk to me over the phone over the years about problems. And there seems to be VA promises and then they disappear like fog when the sun comes up. That needs to stop. The VA and military policy about delay and deny actually began in March 1991, the day of the Gulf War cease fire. That is when the military wrote a memo urging staff to hype the military effectiveness of depleted uranium (DU). The same military memo urges the government to downplay adverse health impacts of DU, a toxic and radioactive waste used as ammunition in the Gulf War. This is very important today because on August 19, 1993, then Army Brigadier General Eric Shinseki signed a memo confirming medical testing was, in fact, ordered for hundreds of thousands of Gulf War veterans exposed to DU. Unfortunately, Dr. Roe, the military never did the DU medical testing for the 700,000 soldiers. VCS has written VA. We have spoken with VA's Chief of Staff and urged them to launch DU research and they have not done so. Of particular note is that in 1999, the U.S. Department of Defense (DoD) and VA leaders met in private and confirmed that Gulf War veterans are, in fact, sick from DU inhalation and embedded fragments. Some of the members of that meeting are here today. So what we are trying to get to the bottom of is we need depleted uranium research and other toxic exposure research so we can find the answers and get treatment. The real coup de grace came just last week, Mr. Chairman, when VA announced $2.8 million in stress research. Now, the research may be good and well-intended to help some veterans, but it sent the message that VA staff was still in control, that the message was that Gulf War Illness is stress and VA is not going to move forward on this issue. So we are asking you here today if Secretary Shinseki and the VA Chief of Staff will not launch aggressive research, especially into DU, then Congress needs to intervene. We need to end VA's policy of do not look, do not find. That is where VA will not look for a problem because that way, they do not have to do anything if they find something. We want you to please hold more hearings on this subject to see how VA implements whatever policies they may announce today because, yes, time is running out. And I'd like to ask one last comment and VA will be the last panel here. I think it would be very constructive if the Chairman and Ranking Member ask some Gulf War veterans here today to comment on what VA is announcing after they have made their announcements so we can close the loop and we do not walk away from here today saying, well, VA offered all this new stuff, everything looks fine. We need some feedback for VA immediately so they know if they are going in the right direction and they do not have to wait months for another hearing, Mr. Chairman. Thank you. That concludes my comments. [The prepared statement of Mr. Sullivan appears on p. 49.] Mr. Mitchell. Thank you. The first question I have is for Mr. de Planque. In your written testimony, you state that people are looking for the cause and not the solution, that even to this day, everyone is looking for the diagnosis rather than the successful treatment. Why do you believe this is mutually exclusive and how will the VA know when it reaches the point of successful treatment for this generation of veterans? Mr. de Planque. Well, there are twofold reasons for looking at it that way. And certainly finding the causes is not unimportant because that can help to protect future generations of veterans who may be exposed to things. And those are important. But the ultimate reasoning behind it, you need to treat the people who have the conditions. And in some cases, if you can find an effective treatment, even if you do not know the exact cause, it is far more important to be actually utilizing that treatment and improving the quality of life of the veterans who are suffering from that. Now, you know, obviously as a medical expert, you can sit there and debate about the specifics of this causes this and so that is how we eliminate that. But rather than getting too far down into the weeds and spending all of the effort chasing the ghost of what exactly caused it when it could be, in fact, a combination of seven, eight, ten different things in combination with each other rather than one specific root cause, if you look to actually treating the people with the problems, that is where we feel that it needs to be a priority. Ultimately the veterans are the people who are suffering and if we can find causes and eliminate them from future exposures to veterans, then that is certainly very helpful because that protects future generations. But right now there is an immediate focus because veterans are suffering from these conditions and finding a treatment for those conditions is to us far more important than actually arguing about what the blame is for them. Mr. Mitchell. Thank you. Mr. Sullivan, if the VA does not do the things that it states it will do to make progress in finding the solution to Gulf War Illness, what would you like to see Congress do? Mr. Sullivan. Mr. Chairman, Congress would need to do a couple of things. Congress would first need to bring VA in and ask what are you doing, what are the results. Also bring in veterans and say what are your impressions, what are the results of VA's actions. And then Congress would also need to introduce legislation to fill in the areas where VA failed to act. Let me give you examples. First, VA did not want to keep track of Gulf War veterans. Congress legislated the creation of reports to monitor veterans. What has VA done? They have stopped producing the reports. Congress ordered VA to conduct research into Gulf War Illness with the University of Texas Southwestern contract money after VA refused to do the research. That was in 2005. In 1998, Congress had to act with the Persian Gulf Veterans Act because VA refused to listen to any outside scientists. We had to call in the Institute of Medicine, the National Academy of Science. We had to create the Research Advisory Committee. All of those things happened, Mr. Chairman, because VA refused to act. It is a few staff stuck in key positions that are blocking change. So if the current Administration, which is now promising to make improvements, to bring change, is not able to do it, we have to find out who exactly in the VA staff is preventing it from happening. And that can happen when you bring in VA, call them on the carpet, and say what is going on. So oversight hearings and legislation, Mr. Chairman. Mr. Mitchell. Mr. Sullivan, you mentioned a couple of areas where Congress forced or passed legislation for the VA. What were the results of those? What did the VA do with those? Mr. Sullivan. Well, when Congress ordered the creation of the Research Advisory Committee, VA dragged its feet for about 4 years and it could not put it together. It took Congress writing letters and the intervention of philanthropist Ross Perot to actually have the Research Advisory Committee created. In another example for undiagnosed illness, Congress passed a law in 1994 to provide benefits for those conditions. VA essentially denied 94, 96 percent of the claims. So the intent of Congress to provide service-connected status for Gulf War veterans so that they get free health care was being thwarted by VA. There were several hearings about that and now VA approves about 25 percent of the Gulf War claims. It is still a disaster because that means 75 percent of the Gulf War veterans with undiagnosed illness claims do not get the free health care that they need. So VA over and over again when Congress launches legislation that tells them to do something, they do not do it. And they have to be dragged in here kicking and screaming. For 20 years, we have been hearing about these promises of change and now we have the Chief of Staff in here. Let us make sure that we hear that he is actually going to deliver on some of the things they are promising because last week, Mr. Chairman, when VA said that they wanted to do more stress research, the phone calls I received from Gulf War veterans were unbelievable. They were furious that VA appeared to be preempting this hearing by saying Gulf War Illness is stress and it looked like VA was doing something. And we have been down that road for almost two decades and it has to stop now. We need assurances from VA in the room that they are going to provide the care and launch the research now. Mr. Mitchell. Thank you. My time has expired. Dr. Roe. Mr. Roe. Thank you, Mr. Chairman. And, first of all, thank you all for your service. Mr. de Planque, just a couple of comments. The way the VA may, and they can speak for themselves, but as a doctor, treating a symptom is very, very difficult. You need to know the etiology of something. I would argue that if you know what caused something, it is a lot easier to treat it than if you are just treating symptoms because I have done that many times. When you do not have a cause of an illness, it makes it very difficult to give an effective treatment. You cannot. And I have chased symptoms in patients that I could not diagnose and never felt good about the treatment they were getting. So we do need to do both. I think a question I would ask, and I certainly would agree with you all 100 percent, and I have forgotten which one in the testimony, but I think Mr. de Planque, by extending this deadline, we need to do that. That is easy to do. And it should be done. And the reason it should be done is, and Mr. Sullivan is absolutely correct, we are still learning about, I am a Vietnam-era veteran, and we are still learning about things that occurred 40, 50 years ago. So absolutely we need to do that. That is one talking point I will leave here with today and we will make sure we at least try to get that done for you. One of the things, and I am not again defending, they will be here in a minute, but a couple of weeks ago, we had a Subcommittee hearing on suicide prevention outreach and we discussed efforts to outreach towards veterans that were contemplating suicide. And obviously that is an issue with veterans across the board if you look at those numbers. But communicating with veterans should not be just limited to that. And both of you or many of you brought up concerns about the lack of communication from the VA with Gulf War veterans on issues that concern these veterans. Mr. Sullivan, I think, did. What do you recommend the VA do to better communicate with Gulf War veterans? Mr. Sullivan. Mr. Ranking Member, thank you for raising that subject of outreach to Gulf War veterans. The first thing VA needs to do is actually sit down and start speaking politely with Gulf War veteran leaders. Then VA can have some focus groups of Gulf War veterans to make sure what it is that Gulf War veterans are looking for and how to have the message tailored. Then the next thing the VA can do is actually start delivering the outreach message based on professional input, based on input from veterans, and, of course, VA staff to make sure they are saying the right thing to the right audience rather than just throwing something up at the wall and hoping it sticks. But the first step, Mr. Ranking Member, Dr. Roe, is for VA to bring Gulf War veterans into the room and sit down and speak with us. And, frankly, they have refused to do so. Mr. Roe. Okay. Well, I think that ought to be easy to do also. I think one of the things that has bothered me during this whole discussion, that has confused me is to put my finger on exactly what the cause of this is so we know what treatment to do. Do you all have any numbers about how many Gulf War veterans are currently being treated with undiagnosed illness? How many have been given disability or treated at the VA? You brought up so many of them could not get in. I think you mentioned of the 690,000, Mr. Overton mentioned that served in his written testimony I read last night, 250,000 veterans are being treated now or, Mr. Overton, did I misread you? Mr. Overton. No, you did not misread me. Right now the current statistical numbers that we see out of the Institute of Medicine is 250,000 that are affected. Unfortunately, many Gulf War veterans left VA care at the onset because every time they entered a VA medical center for care, they were instantly referred to a psychiatrist and it was deemed a psychological condition as well as the limitations of the Gulf War Veterans Information System, we have no statistical numbers to build anything off of. We cannot get that data. It does not seem to exist. There were coding errors and it is just not being made available to us. So the internal numbers we do not know. Anecdotally we can tell you that most Gulf War veterans left VA care because nobody was providing any care. Mr. Roe. Well, you know, I mean, I got that. Do you know how many have gone through the Veterans Benefits Administration and are receiving benefits? Do you all have any numbers on that? Mr. Overton. Yeah. I will touch on that briefly because we know that, too, off of the system. But one of the things to keep in mind with that, one of the things that we pulled over the last several years when we could get data is, you know, when you take a Gulf War veteran and you look at receiving benefits, the majority are receiving a ten percent for tinnitus of hearing loss or ringing, roaring, rushing sensation of the ears. So when we start trying to look at the other data, I know Paul has probably the closest statistics available, so I will yield to him for some of those additional numbers. Mr. Sullivan. I regret to say, Mr. Ranking Member, that I did not bring my glasses up here, so I cannot see the number in my fine print written statement. So I will get an accurate number to you. To the best of my knowledge, approximately 300,000 Gulf War veterans who served in 1990 to 1991 have sought care and/or filed a disability claim against the Department of Veterans Affairs. I was the person who helped create those reports. When I left VA in 2006, they were well-received and reviewed by VHA, the Office of the General Counsel, the Office of Congressional and Legislative Affairs. They all concurred with the methodology and the statistics in the report. However, after I left VA about 4 years ago, the report fell into disarray, frankly because VA wants this subject to go away. You know, when there are more hearings on this, more Gulf War veterans go in for care. And if VA does not have funding to provide for additional care for new patients, then VA sees this as a no win situation. They just want this to go away. So we can sit here and give you all the statistics in the world, Dr. Roe, but here is the bottom line. Gulf War veterans might still be going to VA, but they are not getting treatments for the conditions that we are complaining about mainly because VA never launched the research to find out why we are sick and never really launched the research to provide treatments. And that is why we are here 20 years later, an enormous staff failure that is continuing to kill our vets. We need to keep our eyes on that. The numbers are huge. Mr. Roe. I yield back, Mr. Chairman. Thank you. Mr. Mitchell. Thank you. Mr. Walz. Mr. Walz. Well, thank you, Chairman and Ranking Member, for this continued series of important hearings. I very much appreciate it. And point out again, I think we were talking at the first set of hearings, we pointed it out, the Majority Counsel, Colonel Herbert, is a Gulf War veteran himself and was in the midst of many burning oil wells and other things. So we appreciate his insight into this. I want to thank each of you for being here. I wanted to hit on, I think that both the Chairman and the Ranking Member brought up the point on this epidemiology, of finding out where this comes from is critically important. I do not want to misstate where you were at, but I think it is important. And I think the VA is right to explore where things came from for two reasons, as Dr. Roe clearly pointed out, in treatment, but I also think is, is that so it does not happen in the future. If our current warriors in the Middle East are being exposed to the same triggers, knowing where they came from is critically important. So I appreciate where you are all coming from on that. As frustrated as you are, the one thing I would say, I know, Mr. Sullivan, you spent a lot of time on this. You have been a great voice and we appreciate it. I do not get the same, I guess, feeling from the VA. I think they want to solve this thing. I do not think they want it to go away. I get the feeling they are trying to get it, but I know it is a frustrating situation. I was going to ask and just factually because I think you can support some of the things and say, well, why is this not happening, why is this not happening. The staff gave me a memo from 1993 in response to a U.S. Government Accountability Office report of exposure to DU. And in here, it said provide that the, this is a Department of the Army memo, would provide adequate training for personnel who may come in contact with DU contaminated equipment, two, complete medical testing of personnel exposed to DU contamination during the Persian Gulf War. Did that happen? Mr. Sullivan. Congressman, no, it did not happen. Mr. Walz. Okay. Mr. Sullivan. And the people responsible for not making it happen are in this room today. Mr. Walz. Okay. Now, these are the type of things that I want to get at to try and understand of why this did not happen. It was clearly a directive coming out of the Army. The one thing I can tell you is that I know happened from being a First Sergeant at the time, I was responsible for pushing the play button on the 15-minute DoD DU exposure video and that was it. That was all that was talked about. And as an artilleryman, that was a big issue. But that was the end of it. And so I, too, have a concern if any of this is moving forward. I cannot speak recently, but I know from that time of the mid-1990s up until my retirement in 2005, I never broached the subject again that I can recall. Is that true to the best of your knowledge? Mr. Sullivan. Congressman, you are really close on that. The bigger issue here is that the Department of Defense likes depleted uranium as ammunition. So it hypes the effectiveness of the weapon and really it does not need to be hyped. I was there on the battlefield as a scout in the invasion and I can tell you that DU rounds work. They tore through Iraqi tanks like nobody's business. However, the military did not follow-up with the testing. It is their do not look, do not find policy. Mr. Walz. I do have a follow-up Department of Defense memo from 1995, a year and a half later, that talked about the allegation of this being totally false, apparently presented in a manner designed to mislead, presented out of context, and exhaustive studies of all materials concluded there was no evidence, yada, yada, so forth. So your contention on this is that we never did get at the heart of this? We never made the full effort to try and decide what the exposure looked like even though the directive was made clear in the 1993 memo that we should have done so? Mr. Sullivan. Yes, Congressman, and it still needs to be done today. Mr. Walz. Okay. Before my time expires, for each of you on this across the board, and I think maybe, Mr. Sullivan, you have expressed that, but for our other two panelists, what do you feel like? Why are we not moving on this? Why are we not doing it? Have we not made the determination that Gulf War Illness is real and why are we not moving satisfactorily in your opinion? Mr. Overton. Two parts, Congressman Walz. I wanted to touch first on the initial point you made on epidemiological studies. You know, we can fix this real easy. We have new electronic medical records and we can put a full military history inside of that record that could track the trends and patterns of units. It is a simple database concept and it would drop down and we would take the information of who served where, when, how, and why were you in combat operations. And it would provide our primary care providers to track trends, see effective treatment. So on that front, I believe that could be highly effective and moving forward, especially for our younger service-conn/OIF cohorts. I do not think we want the answers. Every time we see a research study that comes close to finding an answer, it seems as if there is some little mechanism that has been buried inside of it to shut it down. So, again, going along with what Paul says, I mean, we do not want to find this. If we find this, unfortunately, as much as I hate to say it, it becomes a bottom line budget matter. We have to compensate veterans. My mentality on this is if we can fund the war, we need to fund the war fighter. That is all we can do. We have to take care of those of us that went down range in defense of this great Nation and came home broken. And it is the cause and the charge of these agencies to provide that care for us. And it cannot be a matter of we do not have the budget. It is not fair. It is unconscionable and it needs to end now. Mr. Walz. Who do you think puts pressure on them, and I will let Mr. de Planque finish, but who puts pressure on them to do that because when they come to us, we ask them what do you need, tell us what you need to care for our veterans? And I have heard all of us say that time and time again. Who is putting the pressure on them to not ask for it? Mr. Overton. And is that not the frustration because we sit here and listen to that and walk out just absolutely dismayed when we say why are we hearing that the budget is not there, but we know that the budgets have been provided and put into place. You know, I do not want to put all this on VA. VA unfortunately gets the aftermath. The Department of Defense has much responsibility here and I would hope to see in the near future that both the House Armed Services Committee and Veterans' Affairs Committee can come back together to begin to address this because it really does start at active duty. And if DoD, and that is another part of our concern with the report and the way that VA is moving forward is a strong relationship, are they going to be dependent upon DoD to give them the information and DoD has not done that in the past. Mr. Walz. Well, this is another problem of lack of seamless transition causing problems? Mr. Overton. That is correct, sir. Mr. Walz. Mr. de Planque, if you would finish quickly. Thank you, Chairman. I am sorry I went over my time. Mr. de Planque. And just to finish quickly, and I agree completely that if you are going to fund the war, you have to fund the war fighter and you have to fund all of the after effects. I think some of the reluctance to address things like this stems from almost an embarrassment. People do not want talk. It is something people do not want to talk about. It is something they do not want to think about and that is in an even generalized sense about people as a whole, society as a whole in that they do not want to focus on what the after effects were to soldiers. They want to look the other way when they see an amputee soldier struggling through an airport. But at the same time, they want to be sympathetic. They do not know how to deal with it and so they are embarrassed. And so it kind of gets shifted into the fringes and the poor veterans are left sitting out there with questions and they do not know where to turn for answers. And the information component, getting good, accurate information out to the veterans that was mentioned earlier, that is a key component and telling them it is okay to step forward. For Gulf War Illnesses, we have talked recently about post- traumatic stress disorder (PTSD) and removing the stigma from that and saying it is okay for veterans to go forward and seek help. And I do not want to tie that in and conflate it because I know, you know, we have talked about, you know, mixing it with stress stuff, but it is a similar situation in that it is a situation that nobody wants to talk about and nobody wants to tell people it is okay to be suffering from this. These things happen. We just need to find a treatment for it. And I agree with what Dr. Roe was saying also about etiology is important. And we are not trying to say that finding the causes of these things are important. What we were trying to say is you can sit around trying to point fingers and find the blame, what is the blame for this, what is the blame for this, and argue about that until you are blue in the face, but you are not looking for the solution. Sometimes finding the cause of it is a part of the solution and we completely agree with that. But spending all of the time devolving into it has got to be this and subgroups championing that I believe this is the cause and I believe this is the cause. They fight with each other over which should get the lion's share of the research. And so the whole approach, how do we fix the veterans, is ultimately that is why we believe it is more important---- Mr. Walz. I appreciate it. Mr. de Planque. Thank you. Mr. Walz. Chairman, I am sorry for overusing time. Mr. Mitchell. One last question from Dr. Roe. Mr. Roe. Just one brief question. I know we had many people, Nations in the coalition during the Gulf War, much more than now. And Kuwait is a small country. Have we studied the population of Kuwait where a lot of this action took place and the southern part of Iraq and the cohort Nations in England, Canada, Australia? Have they shown similar things? Mr. Sullivan. Dr. Roe, I understand that there were some studies in the early 1990s of Kuwaitis who remained in the theater and they showed increases in respiratory problems, heart problems, and other stuff like that when there were scientific research panels in the Middle East. However, when the U.S. Government decided to look at what was going on, it did a very surface review of that. I do know one thing is that some Nations did not have some of the problems we have because they did not have some of the exposures we had, for example, pesticides, pyridostigmine bromide (PB), depleted uranium, and whatnot. So you actually have different exposure populations. And that is why it is important to find out which one of these issues or multiple may be behind it because at the end of the day, we want to make sure we are providing the right kind of treatment, so we can do both. That is the perfect world. And after 20 years of VA saying it is not this or not that and delaying research, we have actually got to do both now. If we do not get that answer from VA that they are going to look into treatments and research for the causes, we have struck out here. Mr. Overton. And I would like to just add briefly I disagree briefly with Paul. We have had coalition forces over attending the Research Advisory Committee meetings seeing similar disease patterns within their soldiers. The Norwegians were here recently. The interesting thing is it is a much smaller cohort, but also taking the pyridostigmine bromide and having similar exposures and similar conditions. They look to you and to our Nation as the leaders, as the leaders in science and as the leaders in what they are doing to take care of their soldiers, sailors, airmen, and Marines. So it all begins here. The UK has been waiting for our answers, German troops. The world is really waiting for us to come up with a proper answer and a proper approach for this. The difference being they are providing compensation and benefits to their affected soldiers. They are taking care of their own. Mr. Sullivan. And I stand corrected, Don. You are right on that information. Thank you. Mr. Mitchell. Thank you. Thank you very much. I would like to welcome the second panel to the witness table. For our second panel, we will hear from the Honorable Charlie Cragin, Chairman of the Advisory Committee of Gulf War Veterans; Dr. Stephen Hauser, Professor and Chair of Neurology for the University of California, San Francisco, School of Medicine, and Chairman of the Committee on the Gulf War and Health for the Institute of Medicine; and Mr. Jim Binns, Chairman of the Research Advisory Committee on Gulf War Veterans' Illnesses. Again, I would like to ask each panelist to limit their remarks to 5 minutes and your complete statement will be submitted to the record. I would like to recognize Mr. Cragin. STATEMENT OF HON. CHARLES L. CRAGIN, CHAIRMAN, ADVISORY COMMITTEE ON GULF WAR VETERANS, U.S. DEPARTMENT OF VETERANS AFFAIRS; STEPHEN L. HAUSER, M.D., PROFESSOR AND CHAIR OF NEUROLOGY, UNIVERSITY OF CALIFORNIA, SAN FRANCISCO, SCHOOL OF MEDICINE, AND CHAIR, COMMITTEE ON GULF WAR AND HEALTH: HEALTH EFFECTS OF SERVING IN THE GULF WAR, UPDATE 2009, BOARD ON THE HEALTH OF SELECTION POPULATIONS, INSTITUTE OF MEDICINE, THE NATIONAL ACADEMIES; AND JAMES H. BINNS, CHAIRMAN, RESEARCH ADVISORY COMMITTEE ON GULF WAR VETERANS' ILLNESSES STATEMENT OF HON. CHARLES L. CRAGIN Mr. Cragin. Thank you. Mr. Chairman, Members of the Subcommittee, thank you for inviting--press to talk, a marvelous piece of technology--thank you very much for inviting me to testify before the Subcommittee this morning. I am Charles Cragin of Raymond, Maine, and I had the honor of serving as Chairman of this Advisory Committee on Gulf War Veterans throughout its tenure from April 2008 through September of 2009. It was a privilege to serve with the fine men and women of the Committee. As you know, the Committee was chartered by the Secretary of Veterans Affairs to examine the health care and benefits needs of those who served in the southwest Asia theater of operations during the 1990, 1991 period of the Gulf War and to advise the Secretary on the issues that are unique to these veterans. And I should emphasize that the Committee saw its assignment to conduct information gathering, assess the current situation, and then provide advice to the individual who requested it, namely the Secretary of Veterans Affairs. I would like to recognize the Department of Veterans Affairs for the work it has done recently with respect to the Gulf War Task Force. I was encouraged to find many of the recommendations of the Committee referenced within the action plans. I look forward to the Department implementing the plans it has outlined and I offer my support if they would like it to help them in its implementation. In general, Mr. Chairman, the Committee's findings are summed up in the title of its report, ``Changing the Culture, Placing Care Before Process.'' This was a resounding theme. Pockets of people trying to do their best stymied by process or lack of vital information. Many of those who came to VA in the early days after Gulf War I were turned away. In many cases, health care professionals were not able to connect the symptoms experienced by these veterans to defined or known illnesses. Consequently veterans were not able to access medical care and treatment and their claims for service-connected disabilities were often denied. The process served as an impeding wall preventing veterans who were hurting from getting over the wall to take advantage of the care they needed and deserved. Consider for a moment that all the fine men and women were considered in excellent health and deployable when they went to war. In many instances, shortly after their return home, these veterans began complaining of feeling ill and seeking help. Many were turned away as malingerers or having a psychosomatic illness. Why did a department of government designed to care for veterans not identify that something was happening to men and women who had recently been healthy who now were sick? The common denominator being that they had deployed in the Gulf War. The process should have been constructed in such a way that these folks could have immediately been welcomed into the system rather than rejected because the process required a diagnosable service-connection. These veterans were not engaged in a massive national conspiracy to defraud the government. Rather, they were sick, sought help, and in many instances were rebuffed by the agency established to care for them. The process became a wall rather than a door. The Committee has discovered many programs and initiatives within the Department of Veterans Affairs to assist Gulf War I veterans. Unfortunately, these programs and initiatives are not easy to find and it is often incumbent upon the veteran to ask the right question. As I mentioned, the lack of data contributed to the frustration of the Committee and prevented us from conducting any substantive analysis. The Committee discovered that the one database that had come to be relied upon as the authoritative source of information, the Gulf War Veterans Information System, had been corrupted. To date, the issues with this data system have not been addressed. The last valid report to be generated by the system was in February of 2008. How can policy be constructed without an underpinning base of valid data? Dr. Roe, you asked a question concerning numbers and in my final few seconds, let me call the Committee's attention to our total report. On page 14 of that report, we observed that approximately 700,000 U.S. servicemembers deployed to the Persian Gulf during the conflict. Of that number, 248,000 are enrolled in VA health care. Approximately 290,000 veterans have filed claims for benefits with 74 percent receiving some level of disability compensation. Mr. Chairman, I would request that the Committee incorporate our report into the proceedings of this hearing. I thank you very much for the opportunity to be with you this morning and I look forward to your questions. [The prepared statement of Mr. Cragin appears on p. 54.] Mr. Mitchell. Thank you. And the report will be incorporated. [The report entitled, ``Changing the Culture: Placing Care Before Process,'' dated September 2009, submitted by Advisory Commit- tee on Gulf War Veterans, will be retained in the Committee files. The report can also be accessed online at http:// www1.va. gov/gulfwaradvisorycommittee/docs/AdvisoryCommitteeonGulfWar VeteransFinalReport-September2009.pdf.] Dr. Hauser. STATEMENT OF STEPHEN L. HAUSER, M.D. Dr. Hauser. Good morning, Mr. Chairman and Members of the Subcommittee. My name is Stephen Hauser. Since 1992, I have served as Professor and Chairman at the University of California at San Francisco, Chairman of the Department of Neurology. We are trainable, but it takes a while. I am trained in internal medicine, neurology, immunology, and genetics. I am an elected member of the Institute of Medicine. I am here today because I served as Chair of the Committee that worked on the IOM or Institute of Medicine report, Gulf War and Health, Update of Health Effects of Serving in the Gulf War. The sponsor of the study was the Department of Veterans Affairs. The report was released to the VA and Congress on April 8th of this year. I would like to focus on three major points in my testimony, first to discuss the study process of the IOM report, second to summarize our findings and conclusions, and perhaps most germane to present briefly our recommendations for a path forward and for future research that hopefully will address the continuing health concerns of our Gulf War veterans. The IOM is part of the National Academies, a private, nongovernmental organization that provides independent, science-based advice to policymakers and the public. The long- established study process followed throughout the Academies ensures that Committee Members are balanced for any biases and free from actual or perceived conflicts of interest. Important to note that the sponsoring organization does not participate in any portion of the preparation and review of the IOM report. This current report is an update of the earlier Gulf War and Health report, Volume IV, ``Health Effects of Serving in the Gulf War,'' which was published in 2006. The specific charge for our Committee was to review, evaluate, and summarize the literature on a number of health outcomes that were noted in the earlier report as possibly being related to deployment in the Gulf. We also reviewed, unlike the earlier report, cause specific mortality. We began our charge by holding two public sessions where interested parties such as representatives from veterans service organizations (VSOs), Gulf War veterans were invited to speak. We learned a lot and these meetings affected us deeply. The Committee also invited representatives from the VA Research Advisory Committee of Gulf War Veterans' Illness, the RAC Committee. Mr. Binns will follow me representing the RAC Committee to present the findings and conclusions from their report which was published in November 2008. In order to draw conclusions on the strength of evidence for an association between deployment to the Gulf and health outcomes, we use categories of association. These have been used by prior committees and are widely accepted and familiar to Congress, the VA, and veterans' groups. We also took a weight of evidence approach to weighing the evidence and confidence in the evidence presented by individual studies. And I would like to now summarize our findings. We found sufficient evidence to conclude that a causal relationship exists between being deployed to the Gulf War and post-traumatic stress disorder. This was the only outcome placed in this causal category. Also of note, sufficient evidence for an association exists between deployment to the Gulf War and the following health outcomes, other psychiatric disorders including generalized anxiety disorder, depression, and substance abuse, particularly alcohol abuse. These psychiatric outcomes can persist for at least 10 years post-deployment. Sufficient evidence for an association was also seen for gastrointestinal symptoms consistent with functional gastrointestinal disorders such as irritable bowel syndrome and functional dyspepsia, sufficient evidence for multi-symptom illness and sufficient evidence for chronic fatigue syndrome. There was limited evidence in support of an association for a number of other health outcomes including amyotrophic lateral sclerosis, ALS, Lou Gehrig's disease, and fibromyalgia. I would like to elaborate a little bit more on how we evaluated multi-symptom illness also referred to as Gulf War Illness and Gulf War syndrome. Numerous studies have documented that those deployed to the Gulf War have had increasing prevalence of a disabling complex of self-reported symptoms such as fatigue, musculoskeletal pain, sleep disturbances, cognitive dysfunction, moodiness among other symptoms. Our Committee accepted that multi-symptom illness was indeed a diagnostic entity. And we examined the literature to make conclusions regarding its association with deployment to the Gulf War. Some research has identified an association between multi- symptom illness and self-reported exposures to several chemicals that inhibit the neurotransmitter, the chemical in the brain cholinesterase. This is an enzyme that is critical for proper functioning of the nervous system. Pyridostigmine bromide is an example of a cholinesterase inhibitor as are pesticides. In the appendix to our report, the Committee described how Gulf War veterans may have been exposed to cholinesterase inhibitors including evidence possibly linking these exposures to multi-symptom illness. After careful examination, however, of both animal studies and human studies, our Committee concluded that there was insufficient evidence to link possible exposures to cholinesterase inhibiting chemical agents to the multi-symptom illness seen in Gulf War veterans. The Committee believes that the path forward for Gulf War veterans consists of two branches, science and applied medicine. First, we call for improved studies of Gulf War veterans designed and conducted to more accurately characterize deployment and potential adverse environmental influences associated with deployment and to address also possible confounding factors of which there are many. Smoking is one. However, we feel that further studies based solely on self- reports may not contribute substantially to our scientific knowledge at this point so far removed from that original conflict. Mr. Mitchell. Dr. Hauser, could you speed it up a little bit? Dr. Hauser. Yes, I will. Mr. Mitchell. Your written statement will be put into the record. Dr. Hauser. Very good. Let me just finish with a couple of comments. We need very robust cohorts to identify disorders that might occur many decades later, Parkinson's disease, perhaps ALS, perhaps some forms of cancer. We also believe that a major branch of inquiry needs to be launched at the bedside to develop better evidence-based therapies for people with Gulf War Illness. We were surprised how little evidence-based therapy exists right now that can help guide our clinicians at the bedside to care for these veterans. We believe that a large collaborative venture perhaps involving a consortium between the National Institutes of Health, the Department of Defense, and the Veterans Administration would be one way whereby we could engage the very best scientists and the best physicians in this area. So on behalf of the Committee Members, I would like to thank you for your trust and confidence in our ability to assist you with this most important task. Thank you. [The prepared statement of Dr. Hauser appears on p. 56.] Mr. Mitchell. Thank you. Mr. Binns. STATEMENT OF JAMES H. BINNS Mr. Binns. Chairman Mitchell, Ranking Member Roe, Members of the Committee, I am honored to address you again as Chairman of the Research Advisory Committee on Gulf War Veterans' Illnesses. I thank you for holding this series of hearings. There has been a dramatic change in the recognition of this problem in the year since the last hearing and much of it can be attributed to your spotlighting attention on it. Great credit must also be given to two other people who will address you today as VA Chief of Staff, Mr. John Gingrich, has personally led a task to reexamine VA Gulf War policy from top to bottom, bringing to this effort the urgency and concern for his troops he demonstrated as a Battalion Commander during the war. Dr. Stephen Hauser has Chaired a courageous new Institute of Medicine Committee which refused to limit its review to the narrow assignment given by VA stuff. The Research Advisory Committee and the IOM are now in agreement on major scientific conclusions, that chronic multi-symptom illness is a diagnostic entity, that it is associated with service during the Gulf War affecting as many as 250,000 veterans, that it cannot be ascribed to stress or other psychiatric disorders, that it is likely the result of genetic and environmental factors, and that a major national research program is urgently needed to identify treatments. As you heard, the IOM Committee did not feel the data were strong enough to identify specific environmental causes while our Committee did, but that is a relatively minor difference. The question before us this morning is what the government will do now that the problem has been recognized. VA leadership's decision to open the draft task force report to public comment was wise. There is much in the report that is good, but there is also much that reflects old attitudes the report was supposed to change. The tests will come in the final draft of the report and how its recommendations are implemented. I will focus my comments on research. Now that there is a scientific consensus that Gulf War Illness is real, important, and soluble, we have arrived where we should have been in 1995. The task remains to mount an effective national research program, ``A well-planned top-down program employing the best in American science run by people who go to bed at night and wake up in the morning thinking about this problem,'' if I may paraphrase what Dr. Hauser told me a few weeks ago on the telephone,'' his Committee envisioned. This country is not doing that. At VA, there are some individual researchers doing excellent work. And VA is in the process of launching a new program and hiring a toxicologist to staff it. They have issued requests for proposals that include most topics recommended by the Research Advisory Committee's report. They have appointed a Steering Committee of outside scientists to guide this program. There is a plan being developed for a major genetics component. It all sounds very positive. However, the new RFAs (Requests for Advice) have failed to attract much interest from the VA research community. There is no comprehensive research plan. The places that VA has found to invest most of the funds committed this year are not for priority research topics. Research involving the psychological aspects of chronic illness is again being favored. The new Steering Committee was not consulted on several new research studies announced last week. The press release announcing the studies carried the old message that Gulf War veterans' problems are mainly psychological. In short, VA's new research program resembles far too much VA's old research program. To mount an effective program, the Office of Research and Development must create a comprehensive plan focused on priority research topics under the leadership of a scientist who understands the problem, who harbors no doubts about its nature, and who goes to bed at night and wakes up in the morning thinking about how to solve it. Assuming that VA makes these major necessary changes, it cannot do the job alone. Yet, the Department of Defense, which has historically funded two-thirds of Gulf War Illness research, has eliminated this research entirely from its budget for many years. This action is tragically shortsighted given the major implications of this research to current and future military personnel at risk of multi-symptom illness and toxic exposures. Congress has responded by establishing a Gulf War Illness Research Program within the DoD Congressionally Directed Medical Research Program (CDMRP). This well-managed program is open to all researchers. However, it is grossly underfunded having received just $8 million in fiscal 2010. Congressional supporters have proposed $25 million for this program in fiscal 2011. Compare these figures to the billions of dollars recently calculated to cover the care and disability of Vietnam veterans exposed to Agent Orange. How much better for ill Gulf War veterans, current and future U.S. military personnel, and the public treasury to cure this illness rather than to allow veterans' health to deteriorate. I urge you to make this bipartisan issue a priority and to press upon your colleagues the vital importance of adequate funding for Gulf War Illness research at CDMRP. I would also encourage you to support Gulf War Illness reform at VA. As last week's press release makes clear, there is still push-back within the bureaucracy to the initiative Secretary Shinseki and Chief of Staff Gingrich have begun. Bureaucrats remain while appointed leaders come and go. I urge you to consider legislation to ensure the permanence of reforms. I urge you to hold annual follow-up hearings to keep the spotlight on. It is important to close on a positive note. Twenty years into this battle, the objective is finally clearly in sight. It is time for leaders and resources adequate to accomplish the mission. It is within reach. It is a matter of choice. [The prepared statement of Mr. Binns appears on p. 59.] Mr. Mitchell. Thank you. Mr. Cragin, in your testimony, you mentioned one of the frustrations of your Committee was the Gulf War Veterans Information System and how this database had been corrupted. Today you say the issue with the database has not been addressed. A couple of questions with that. Why do you think this is so and what detrimental impact would there be should this database remain corrupted? And if it is something as seemingly simple as fixing a database, why has this not been corrected and what larger problem do you think there is left that is broken? Mr. Cragin. Well, Mr. Chairman, I cannot obviously speak for the Department of Veterans Affairs. But during the time that the Committee was in existence and was trying to get data and on occasions there was great reticence within the Department to provide us with information on a timely basis, something that we observed in our report, it became apparent to the Committee that the data was changing before our very eyes, had become corrupted, and finally we were able to get the guardians of the data, so to speak, to concur that, yes, in fact, it was corrupted. I inquired recently as to whether there had been any change within the Department with respect to this Gulf War Veterans Information System and they advised that they were not going to try to fix this corruption which had occurred as a result of a transition from a Legacy System to a ``newer system,'' but were, in fact, going to invent a new system. We will have to wait and see. The concerns of the Committee and I think the concerns of veterans generally is you need good data in order to make good policy first and foremost. Secondly, really that was the only database that identified this cohort of Gulf War veterans because the Gulf War is still on. And this cohort has never ever been tracked within the medical community, for example, at VHA as a specific cohort. So physicians are not necessarily trained to recognize one of these vets when they walk in the door, when they get in the door, and to be able to make an evaluation based upon their particular profile and history. That is why I mentioned it in my testimony because it was so frustrating to the Committee. I have worked in the government for a number of years and if you do not have good information, you cannot make good decisions. Mr. Mitchell. Mr. Binns, in your testimony, you state that there is also much in the task force report that reflects old attitudes that the report was supposed to change. Could you elaborate a little more on what the old attitudes are contained in the report. Mr. Binns. The best example that comes to mind, and this was in the draft task force report, I understand that VA has made substantial revisions, so we look forward to those, but in the draft task force report, the introduction presented these problems as perceptions of veterans, the perception of veterans that VA somehow was not doing all it could or should, and it neglected to mention all of the facts that have been presented to you today about care, about research, and so on that reflected an attitude that did exist in the Department of Veterans Affairs for many years and in some quarters still does today that this is not a serious problem that should be addressed seriously. So that was one clear example. And I look forward to seeing if that is corrected in the new version. I do think it was a very positive step that the Department did to put this report out for public comment. Mr. Mitchell. Again, Mr. Binns, why do you feel that the new requests for advice, the RFAs, have failed to attract much interest in the VA research community? Mr. Binns. Well, just as veterans have been told that this is not a serious problem or that it is just a collection of symptoms, so VA researchers and VA doctors have been told that. And when you are a researcher and you are deciding what to invest your time on and your career on, you naturally want to do it on something that is important, that is recognized by your mentors as important. So it is going to take a very emphatic effort on the part of VA leadership and VA research leadership to indicate that they have changed their approach on this, that this is a very important problem if they are going to get their researchers to respond. Mr. Mitchell. Thank you. My time has expired. Dr. Roe. Mr. Roe. Thank you, Mr. Chairman. Dr. Hauser, you made some interesting points. And I commend the Institute of Medicine for digging into this very, very difficult subject, and the more I read and the more I read about where you got your information and so forth to specifically bring out the conclusions, and I am going to talk about those in just a minute. How many reports and studies and so forth did you all do at the IOM to come to your conclusions that you brought out here just a moment ago? Dr. Hauser. How many reports did we review, sir? Yes. We initially--excuse me. She turned it on for me. Mr. Roe. You all are using all my time up punching the button. Dr. Hauser. I am not used to this button. We initially looked at over 1,000 and decided that 400 were significantly, were substantially serious contributions that we studied those in detail. Mr. Roe. Okay. And you mentioned cause-specific mortality. Could you discuss that in a little more detail? Dr. Hauser. Yeah. So we tried to capture the death records that we could from various sources and I think the time is still probably too early to have robust data in the area of cause-specific mortality. We need to go further for that, to have strong data in terms of excess mortality beyond what had been noted in the earlier report, increased mortality from automobile accidents, particularly in the early years after the conclusion of the first Gulf War. Mr. Roe. And I think Mr. Cragin makes your point about the database not being there. I think you are absolutely dead on right about that. Without that information, you draw an erroneous conclusion. And what is helping me is what we have done with the Vietnam era veterans and Agent Orange. In this particular group of men and women who served, you had the causal for PTSD and that is causal. We were okay with that. The GI (gastrointestinal) symptoms, that is also causal. And is that correct? You mentioned you had evidence---- Dr. Hauser. I believe that GI symptoms were an association that was sufficient but not causal. Mr. Roe [continuing]. Not causal. Okay. Dr. Hauser. Yes, sir. Mr. Roe. Sufficient, but not causal. And causal was PTSD. The multi-symptom illness, could you define that to me what that is, multi-symptom illness, Gulf War Illness? I have been trying to figure out what that is so if someone asked me, I could explain it. Dr. Hauser. I think, sir, you have not been able to define it yourself because different definitions are used in the literature. And we really do not have a single definition that people have agreed upon to define this constellation of symptoms that overlap with other disorders prevalent in the civilian community, chronic fatigue syndrome, chronic unexplained fatigue, fibromyalgia, widespread pain syndromes. You know, there are 81 million Americans who suffer from chronic pain. That is an important component to this. Headache, bowel symptoms, cognitive disturbances, musculoskeletal pain, tingling, and the symptoms vary in different individuals. And one of the problems that came up in earlier analyses was that the symptoms were so broad that an easily recognized diagnostic entity could not be identified using a method known as cluster analysis. Mr. Roe. Okay. That is what I thought. You did not have a statistical significance of four symptoms or five symptoms you could put together? Me, when the patient came to see me, I could listen to that history and there are no biomarkers you can draw from---- Dr. Hauser. That is correct, sir. And I think that also made it very difficult to interpret what different researchers meant by Gulf War syndrome or chronic multi-symptom illness. Mr. Roe. I agree. I think what you have done is put some more smoke in the room. It is difficult to define. And so you have Gulf War Illness. I am beginning to get a little bit better idea. It is a very broad set of symptoms. Dr. Hauser. Yes. Mr. Roe. Very broad set of symptoms. But there is no clear concise conclusion from experts about what that is? Dr. Hauser. That is correct. Mr. Roe. And that is why what Mr. Cragin is saying is so absolutely vitally important because you can get, over time, you can get that information. And I think it was Mr. Overton that mentioned about the electronic medical record, having this data in there that you can peel this back and look at it with thousands of people or hundreds of thousands of people to come to some reasonable conclusion because right now you cannot. Dr. Hauser. It is having the data available, but also making certain that the proper data is encoded in the medical record. The content of what is in the record needs also to be standardized. Mr. Roe. And then once you do that, it is to try to figure out how to adequately and properly treat these patients---- Dr. Hauser. Yes, sir. Mr. Roe [continuing]. After you have that. I yield back, Mr. Chairman. Thank you. Mr. Mitchell. Thank you. Mr. Walz. Mr. Walz. Thank you, Mr. Chairman. What Dr. Roe hit on, I know I am a broken record on this, it does go back to seamless transition. Our ability to be able to coordinate across the spectrum on records and everything else is a frustrating situation to me. I, too, would like to comment on the research. And, Dr. Hauser, my home district is the Mayo Clinic area, so I have become somewhat familiar with the IOM and how things are carried out. How would you characterize how Gulf War Illness or the issues you are hearing has been addressed compared to other issues out there? How were the studies done in your opinion? Dr. Hauser. In my personal opinion---- Mr. Walz. Right. Dr. Hauser [continuing]. There has been, I think, a lack of a top-down approach that could be very helpful in this situation. I think that big science is needed to have definitive answers for this type of problem. Analogies might be the polio effort or more recently the effort that was centrally coordinated against HIV to find the cause and then the therapies for AIDS. We are in a very different place. Modern genetics, modern cell biology, and imaging combined with informatics and clinical trials creates a wonderful opportunity to have a coordinated effort informed by the very best science and the very best bedside medicine. Mr. Walz. Dr. Hauser, would you concur with Mr. Binns that those very best folks are not going to do this on the RFA? Do you think---- Dr. Hauser. The RFA is a great mechanism for creative science by individual investigators and perhaps less useful for this very large top-down effort that may be needed here. Mr. Walz. Okay. Very good. That is helpful to me because I am trying to get this in my--as I said, coming from the Mayo and in my own doctoral studies. Mr. Binns, you said something interesting and I know this is what I am trying to get at. Everybody in this room wants the best care for these veterans. Something is happening to them. I am really glad, Mr. Cragin, you are pointing out there is not a national conspiracy to defraud the government from these folks. These are warriors and heroes and did their job and came back. And in a minute, I am going to ask you too if you believe there is a massive conspiracy to deny their claims, because there is the other side of this, and if I could come back. But, Mr. Binns, you mentioned that we want these best people there, but you said you wanted somebody in research with no doubt. It has been my conclusion that doubts are at the core of research, of trying to get there, that you find that is where you need to start from. I say that because I think there is a belief among some veterans that there is a preconceived notion on this. So I would ask you, Dr. Hauser, were you under any pressure to come up in that IOM study with a preconceived or predetermined outcome? Dr. Hauser. No, sir. Mr. Walz. Okay. Mr. Cragin, were you in your research, did you have a predetermined outcome that you were supposed to come up with? Mr. Cragin. Absolutely not, sir. Mr. Walz. So there was no conspiracy to deny the claims on this that you could tell from your position? Mr. Cragin. No, Mr. Walz. But I think perhaps to be more responsive to your question, there are some great people who work at the Department of Veterans Affairs. I was parachuted into the Department in 1990 as the first presidentially appointed, Senate confirmed Chairman of the Board of Veterans' Appeals. And I must admit that I found a group of people who want to do it their way or not do it. My management approach is lead, follow, or get out of the way. And, unfortunately, I think leadership sometimes in organizations has to confront and spend an inordinate amount of time dealing with those folks who decline to get out of the way. Mr. Walz. Well, I am appreciative. And I, in all full disclosure, my colleagues heard me say this, I am a cultural studies teacher, so this issue of culture always comes back to me on this and I believe it is at the heart of many things that we do. And what I am struggling with is, is that we are trying to do the science, we are trying to do it unbiased, we are trying to do it in a caring, passionate manner with the realization that we have folks here who are experiencing a degradation of their daily lives because of most likely either causal or sufficient evidence or association-wise with this and we are trying to balance this all out to get it there. So for me, the one thing I would say is you did a really nice study. You got this all done. It is 10 months into it. You made some recommendations. Have we reinstated authority to enroll Gulf War veterans in Group 6? Mr. Cragin. Not to my knowledge, but it is my understanding that Mr. Gingrich and his task force is working on that issue at the present time. Mr. Walz. Okay. I will save us the time to do this. If I read down through this whole list of recommendations, have any of them been implemented yet? Mr. Cragin. Sir, not to my knowledge. Mr. Walz [presiding]. Okay. I yield back. Mr. Roe. You are yielding to yourself. You are the Chairman now. Make sure we have our next panel. Mr. Walz. Mr. Roe, you have a follow-up? Mr. Roe. I do not. Mr. Walz. If there are no follow-ups, then I personally want to thank all of you for the work you are doing. Thank you for sharing this with us and I look forward to working together in the future. We appreciate it. Thank you all. For our third panel, we are going to hear from John Gingrich, Chief of Staff and Chairman of the Gulf War Task Force for the Department of Veterans Affairs. Mr. Gingrich is accompanied by Dr. Victoria Cassano, Director of Radiation and Physical Exposures, Veterans Health Administration; Dr. Joel Kupersmith, Chief Research and Development Officer, Veterans Health Administration; and Brad Mayes, Director of the Compensation and Pension Service for the Veterans Benefits Administration. Thank you all for your time here. I think when you get situated, we will go ahead and hear from Mr. Gingrich first. STATEMENT OF JOHN R. GINGRICH, CHIEF OF STAFF, U.S. DEPARTMENT OF VETERANS AFFAIRS; ACCOMPANIED BY VICTORIA CASSANO, M.D., MPH, DIRECTOR, RADIATION AND PHYSICAL EXPOSURES SERVICE, ACTING DIRECTOR, ENVIRONMENTAL AGENTS SERVICE, OFFICE OF PUBLIC HEALTH AND ENVIRONMENTAL HAZARDS, VETERANS HEALTH ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS; JOEL KUPERSMITH, M.D., CHIEF RESEARCH AND DEVELOPMENT OFFICER, OFFICE OF RESEARCH AND DEVELOPMENT, VETERANS HEALTH ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS; AND BRADLEY G. MAYES, DIRECTOR, COMPENSATION AND PENSION SERVICE, VETERANS BENEFITS ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS Mr. Gingrich. Chairman Mitchell, Ranking Member Roe, Members of the Subcommittee, thank you for holding this hearing today. I also want to thank the preceding panels for their candor and insights into the challenges that we face. Regardless of our position, we understand there is a lot of work that remains to be done. Our task force relied heavily on the outstanding contributions of the Advisory Committee on Gulf War Veterans and the Research Advisory Committee on Gulf War Veterans' Illnesses. I would like to publicly recognize Charlie Cragin and Jim Binns for their superb leadership and unwavering support of our veterans. I vividly remember two experiences from my Gulf War deployment, the physical reaction to PB pills and the chemical alarm sounding in the battalion area. We were told the physical reaction was due to heat and the alarms were malfunctioning even though they seemed to not malfunction during training. In our last days, a soldier in the operations center became extremely sick. Our medical personnel could not explain the cause. Eventually he was medivacked. Today he is undeniably physically suffering multiple illnesses. Despite being in the same unit with similar exposures, I am not ill and he is and I do not know why. This hearing is entitled ``The Future of Dissatisfied Veterans.'' It is understandable why some are dissatisfied. They are sick and sometimes have been given misinformation and answers and cures are not readily available. For years, they were told their symptoms were a mental condition or they were not taken seriously. In trying to get the benefits they earned, they were denied or delayed in the process. Given all this, it is understandable why some lack trust in DoD and VA. We recognize the frustration that many veterans and their families experienced on a daily basis, people who only want to have their quality of life restored. It is our responsibility to rebuild and earn their trust. VA is challenging the way we do business and changing in many ways. It is already changed and we have become more proactive advocates for Gulf War veterans, in fact for all veterans. While there is more to be accomplished, the task force is among the first steps in that change and it will not be the last. My accompanying witnesses, Dr. Cassano, Mr. Mayes, and Dr. Kupersmith, serve as members of the task force. They bring over 50 years of experience in health care, benefits delivery, service to our Nation and its veterans. Dr. Cassano, a Navy veteran, returned last night from teaching an exposure seminar to VA clinicians in Portland to improve direct clinical care, a theme being developed for our next report. She is also key to our Joint Medical Surveillance Program for veterans at Qarmat Ali, Iraq. This program is the first of its kind, DoD and VA proactive medical surveillance to ensure that the current generation can avoid some of the problems plaguing Gulf War I veterans. In fact, notification phone calls are underway to enroll veterans, civilians, and servicemembers as of today. It is a joint DoD/VA effort. Mr. Mayes, a 19-year VA employee, was hands-on in developing 22 rules and regulations helping veterans, as well as training letters for claims adjudicators to use in deciding environmental exposures. He is at the forefront of our effort to break the back of the disabilities backlog and our fast- track presumptive claims processing program and our southwest Asia veteran system or data bank system that will be established and operational no later than October 2010. Dr. Kupersmith led 49 new studies to find the sources of and develop treatments for Gulf War Illnesses. He is working to improve VA partnership with RAC to establish a Gulf War Research Steering Committee and to install a new Director for service-related illnesses in the Office of the Research and Development to oversee all programs. VA is adding combat experienced advisors to the National Research Advisory Committee. All these actions improve our research and development program and change the culture. Secretary Shinseki charged the task force to conduct a comprehensive review of all VA programs and services for Gulf War veterans to seek opportunities to better serve those veterans, to engage these veterans with genuine transparency and measurable accountability for the care and services we owe them and to earn their trust. The task force was designed as an interdisciplinary matrix team charged with being candid, aggressive, innovative as we investigated allegations and perceptions, analyzed the facts, developed the recommendations. The result is a unified, comprehensive organizational plan. While our primary focus was on the veterans deployed in 1990 and 1991 Gulf War period, we sought a broader new view by applying the lessons we learned to improve practices and policies in the support of all veterans including the current conflicts in Iraq and Afghanistan. We took the unprecedented step of posting the report online for public comment. The response was strong. One hundred and fifty suggestions were submitted, 300 additional comments, and more than 2,100 votes were cast by 189 unique public respondents. I have personally reviewed every comment. They provide great insights. Our action plans are our initial road map to transform the care and services we deliver, as well as provide new and improved tools for VA personnel. The report is not a panacea for caring for Gulf War veterans, but we have made every effort to establish a strategy and an execution plan for the weeks, months, and years ahead. We are not waiting for the release of the report to execute the recommendations. We are moving out now. We are not waiting because the veterans have waited long enough. We will not disband the task force. Our work will continue. We will issue annual reports capturing progress and addressing new areas of focus. VA will reach out to all Gulf War veterans who were turned down for care and services to make them aware of the changes and encourage them to apply for care and benefits. We know that not everyone agrees with the report or the actions we are taking just as we recognize the mistrust and misperceptions some have. We encourage all of our stakeholders, internal and external, to set aside individual differences to continue and further develop our collaboration. Speaking as one of the VA leaders and a Gulf War combat veteran, we must work together, share the challenges, and stay focused on helping our veterans and find the right solutions. We welcome your recommendations and even criticisms in our ongoing constructive dialogue. Our goal is to continue gaining veterans' trust in VA. I know that is our shared goal. This concludes my opening statement and we look forward to your questions. Thank you. [The prepared statement of Mr. Gingrich appears on p. 61.] Mr. Walz. Dr. Roe, if you are ready, I am going to yield to Dr. Roe to start out as our medical expert on this and then come back. Mr. Roe. Thank you for that. Mr. Walz. Absolutely. Mr. Roe. I guess, Colonel, one of the things that we have here they just handed me was a Gulf War review. And the way it works for us, the Sergeant Major, I am sure, has had a similar experience, what happens to us is I will go this week to the Bowmantown fish fry. And somebody is going to walk up to me and they are going to say during that fish fry, Doc, I have been having these symptoms, what should I do. And I tell them try to get an appointment to the VA. And it says right here disability compensation. And what will happen is I will say, well, call Ann at my Morristown, Tennessee, office and talk to her. And you talk to Ann. You get all the things filled out and then it gets denied. And then we refile it and it gets to Nashville. And then it gets to Washington and then it gets denied. And that is sort of what happens. I have had that experience many times. And I think one of the problems has been is there is not a clear definition of what really qualifies so that when someone comes in that they know that they can get these particular benefits. So I know when you do this right here, this is a nice piece of paper, but I am going to jump through a thousand hoops and so is my office when we come up with the very next veteran. I promise you when I get home this weekend, something will happen just like this. And how is that going to be different with what you just said? Mr. Gingrich. There are several things that are being done, Dr. Roe, and I do not want to make it sound too simplistic because it is complex. But one of the things we have done is we just announced the fast track for processing presumptive claims. We have already put three presumptives in the process. Those are the Agent Orange presumptives. The next priority, the Gulf War. Those presumptive claims we say that we will process in 60 days or less. Totally automated. You go to the Web site. You download a medical questionnaire. You take that medical questionnaire to any clinician in the country. The clinician fills out the questionnaire answering all the questions on the questionnaire. They prove military service and the role it had in it. If they actually have the illness, we will process the claim. This is different than what we currently do. These questionnaires, there are 67 of them and we have three done and we are in the process of getting all 67 of them done by the 1st of October. Mr. Roe. I am going to find out about that. That sounds pretty easy, but I am going to absolutely try that. I will let my Veterans' Affairs person in my Congressional office try it, and I just bet you it will not be that simple. Mr. Gingrich. Sir, that is just one step we are making in the process, but these questionnaires, the advantage of this questionnaire is it allows you to take the questionnaire to a non-VA clinician and get it filled out. That has not been done before. Mr. Roe. No. Mr. Gingrich. The questionnaires have been worked with VHA and VBA and the Board of Veterans' Appeals to make sure that we have all the questions that we need to have to evaluate that disease, Parkinson's, for example, or ischemic heart disease. Mr. Roe. When this is all filled out, when it gets to the person that makes the decision, they will be able to make a decision affirmative or negative based on this questionnaire and based on what? Mr. Gingrich. Based on the proof of military service and the disease. Brad. Mr. Mayes. Yes, in the case of the Agent Orange presumptives, because the nexus burden is relieved and that is the essence of creating a presumption of service-connection, if the veteran has ischemic heart disease and the service indicates that it is qualifying for the purposes of extending the presumption, in other words, they stepped foot in Vietnam or served on its inland waterways, then we would certainly be able to make that connection quickly. The disability benefits questionnaires are really helping the veteran to participate in the process by getting a private examiner to provide the evidence that allows us to give the veteran the proper evaluation, and determine the rating, as opposed to having them come in to a VA medical center and be examined. It would streamline the process. Mr. Roe. And my time is about up, but one more question briefly. Do you feel like that the DoD/VA needs more resources? That is what we need to know up here at this dais. Do you need more resources to study this issue or do you have enough information to make the decisions you need right now? I think that is the takeaway I am going to leave from here with. Mr. Gingrich. To answer your question about right now that is I think we do. Do we need to continue this research into the project and what we need to get done and develop more action plans? Yes, sir, we do. And when we get those developed, we will have a better appreciation for where we are. But we just added in the, if Congress approves the President's budget, $377 million into VBA to get at the claims process, to go aggressively after it. So right now I would say yes, but I do not want to close the door on coming back later. Mr. Roe. I guess one of the comments that someone in the first panel mentioned was wanting to sit down with VA and have an open door. Is that a possibility? Mr. Gingrich. Yes, sir, it is a possibility. Mr. Roe. It would be reasonable to me to do. Mr. Gingrich. Yes, sir. In fact, we have shared this report. The draft report was open to the public and it was shared with veterans service organizations before, individual VSOs, and we have their comments back. Mr. Roe. Okay. Thank you. I yield back. Mr. Walz. Well, again, I thank you all for being here. And I want to be absolutely clear that I understand everyone in this room wants what is best for our veterans and that is what we are trying to get to. But I would be remiss to say one of the issues here is the perceived lack of attention that our veterans say they believe they are getting. This panel requested Deputy Secretary Gould. He declined to come. Do you think that sends the right message, Mr. Gingrich? Mr. Gingrich. Chairman, I am not getting into the internal things that happened back then. But I will say the message sent is this is a priority of the Secretary and this is a priority of the Deputy Secretary. I think if you would go by Secretary Shinseki's record, he is serious about advocacy for veterans or he would not have taken on the Gulf War question, the Agent Orange challenges of presumptives. He would not have approved the nine presumptives for Gulf War. He is about to announce the Volume VIII and Volume VII results that were at the task force. We brief him regularly. What he has done is he has divided the efforts of the organization and he said, to me, you very well represent Gulf War veterans because you served yourself and I want you to personally take---- Mr. Walz. Well, I certainly do not want to, and I do not mean that derogatory to you, you are a great resource for us, you have been here, I just think this perception of bringing this back together is critically important. I would come back again. Dr. Roe asked the question about funding. Just a couple months ago on the views and estimates, not one penny was requested for Gulf War Illness Research. What message does that send us? Mr. Gingrich. The President's budget was passed by Congress for 2010 was a significant increase, in fact the most significant increase in decades. Mr. Walz. So it was enough? Mr. Gingrich. It was enough for what we have in---- Mr. Walz. How does that Mr. Roe just asked---- Mr. Gingrich. As he said I do not know what the final 2011 budget is going to be. But based on what we know about the 2011 budget, they are putting $377 million into VBA to work on the claims process. I believe it is enough to jumpstart us of getting at the backlog and getting at the medical research that we need to do because in the report when we publish it, it will show where the money comes for the initial elements that we want for---- Mr. Walz. So that $2.8 million recently announced is enough? Mr. Gingrich. That is not enough. We already have more money and we are going to make more announcements in 2010 and 2011. Mr. Walz. Well, I want to get at this. You heard Mr. Cragin say that, and we were talking with the last group, and I asked the recommendations that Mr. Cragin's group, these are being implemented then? We are prepared to do so? Mr. Gingrich. We are prepared, I cannot say all of them off the top of my head, but 80 percent of the recommendations that were presented to us by the two Committees are in this report. Mr. Walz. And what is the timeline on that? Mr. Gingrich. Sir, we have already started on some of them, some of the research. Mr. Walz. Okay. Mr. Gingrich. Having the Steering Committee was worked out with Mr. Binns, the fact that we needed a Gulf War Research Steering Committee so that the RAC and our research people could sit down and work it out. I think Mr. Binns would be or at least understand when we said we have created a new person, a new position for a Director to look at combat-related illnesses. That Director is to take these programs, pull them together, and look at them to get at what the previous panels talked about when they said you need an overarching plan---- Mr. Walz. Yes. Mr. Gingrich [continuing]. To go after it. That is being implemented right now. We are going to start. We are out looking for a person to fill that position. So there are things in here that we have already done. And I really do appreciate the two Committees and the other panelists that came up because we are looking at every one of these issues and some of them we have already done and some of them we are working on. Mr. Walz. Mr. Gingrich, do you feel that the first panel was an unfair criticism of where we are on this or do you think it stems from a frustration of 20 years of waiting? There were some pretty pointed comments about what is not happening. And these are folks, they themselves, that are, as you, part of this cohort. So how do you respond? I mean, I think we owe a response to the first group and I owe you the opportunity. As I said, the commitment you have to our veterans is never in question. Mr. Gingrich. Congressman, let us go back to your days as a Sergeant Major. You know that you and I have experience in a unit. When trust is broken, the unit becomes dysfunctional. And what we are saying is the trust has been broken and it is our job to put the trust back. And I cannot expect the first panel to come in here and expect the Chief of Staff who, as they made it very clear, is an appointee is going to come in and change 20 years of history or, as they were referring to, 40 years of history. But I think Secretary Shinseki has made it very clear that our job is to be the advocate for veterans 24/7 and we are trying very earnestly and with all heartfelt effort to make that happen. And I believe that the people who are sitting here with me have taken this on in a great effort to say we are going to do this differently. One of the things that the Secretary charged us with is do not make this so that it leaves when you leave, John. You have to set this up so that it is here, it is institutionalized. That is why we are putting it in regulations. That is why we are putting it into the governance process of VA. The Deputy Secretary in his monthly performance reviews is going to get briefed on where we are in the task force. That is why it has been put into the budget process for 2012. So---- Mr. Walz. Mr. Gingrich, I am appreciative of everything you do. Do you think if we are here a year from now that the first panel will be able to see a difference in the lives of those warriors that were there? Do you think they will be able to see an appreciable difference in how we are caring for them or how the culture is working or how the research is moving? Do you think that is a reasonable expectation? Mr. Gingrich. Yes, sir. Mr. Walz. So if we reconvene or, as you said, whether you and I are here at that time, it is important that the institutions that care for them are still there, so whoever is here at that time, they will be able to see that? Mr. Gingrich. I am absolutely convinced, sir. Mr. Walz. All right. Well, I thank you all. And, again, thank you for your work. Dr. Roe, if you have any further comments. Mr. Roe. Just very briefly. First of all, I thank all of the panel Members. You have done a great job and have actually--it is a very complicated problem that I am trying to get my arms around. I think just a statement that we as a country or the VA or the DoD need to do. I heard, Colonel, you say trust has been broken. We did that in Vietnam. It looks like we have done that with the Gulf War. We need to stop doing that. We need to have, when veterans come home, whether they are intact as I was when I came home from overseas duty or whether you do not come home intact, we have an obligation. I believe the VA does. And I know that my own VA in my hometown does. I really honestly believe that in my heart. Do they get it all right? No. But as a country we have to stop doing that. And we have conflict going on now in Afghanistan and Iraq that we are going to be paying the penalty of that for years to come and we need to start right now doing it right. And I think I have gotten a pretty good idea about how we can do that. But as a Nation, I believe we are obligated to our warriors to do that. And we owe that obligation. We saw a young warrior last night on the House floor that lost both legs and his hand. I cannot do enough for him. Personally I cannot do enough for that warrior. So we have to accept that, I think, as a Nation. As a philosophy we have is, we are going to do right by them when they are in war and we are going to do right by them when they are home. And I appreciate, Mr. Chairman, you all holding this. The hearing has been very informative for me. Mr. Walz. Thank you, Dr. Roe. Final question on the Gulf War review that is going out and we are getting them. How are you disseminating that? How do we know who we are targeting with that and how are they getting the information? Mr. Gingrich. We have 200,000 plus in our database. We also put it on our Web site. All 300 of our Web sites will have a link to this report. We will also take and distribute it. I only know of one Gulf War 20th reunion or 20th celebration or whatever you want to call it, recognition. We are going to that. You talk about engaging the veterans. We are going to go to that. I am going. We are going to run an hour and a half discussion. We will also set up a benefits where they can talk to the benefits folks. They can talk to the VHA folks. They can talk to a cross-section of the VA. So there will be two sessions set up on the Saturday. So we are walking out and reaching out and saying, okay, we will meet you at this event. Mr. Walz. We appreciate that. And I would follow up with Dr. Roe. These are the things that we steer people to, but he is right. If we are going to see this, there is going to need to be action and we are going to need to be partners in that. Mr. Gingrich. Right. Mr. Walz. Well, again, I thank you all for being here and all our panels. I think all of us know this was a series that will not end. This job will not be done. And I continue to say it and I know Dr. Roe believes it also, this is a zero sum game and if one veteran falls through the crack of care, that is one too many. So our obligation is unwavering as is we know yours. And I look forward and am hopeful that we are changing in the right direction. So with that, this hearing is adjourned. [Whereupon, at 12:02 p.m., the Subcommittee was adjourned.] A P P E N D I X ---------- Prepared Statement of Hon. Harry E. Mitchell, Chairman, Subcommittee on Oversight and Investigations Thank you to everyone for attending today's Oversight and Investigations Subcommittee hearing entitled, Gulf War Illness: The Future for Dissatisfied Veterans. Last year, this Subcommittee held two hearings on Gulf War Illness. Our first hearing gave us an overview of purpose, research and the methodology that the VA utilized to determine the parameters relating to Gulf War Illness. Our second hearing evaluated the scientific information and analyzed the different schools of thought on Gulf War Illness research. In both these hearings, it has become clear that veterans are suffering from symptoms related to service in the Gulf, and that they are continuing to struggle for the healthcare, treatment and benefits they deserve. Our third and hopefully final hearing today, we will hear from the Department how they plan to move ahead and implement the culture, care, benefits, research, outreach, and education efforts for our Gulf War veterans. Next month will mark the 20th Anniversary since the United States deployed almost 700,000 troops to the Persian Gulf. With a growing number of these veterans developing undiagnosed and multi-symptom illnesses, they have looked to the people who promised them the care worthy of their sacrifices when they returned home. Still to this day, many of our Gulf War veterans have yet to see this care and are finding themselves fighting the VA for service connected compensation. Under the new leadership of Secretary Shinseki, a new vision and a new mission has been created at the Department, and I know that Members on both sides of the aisle are eager to see how the VA will use this new vision to ensure that our veterans are receiving the best possible care. As part of this new vision, Secretary Shinseki's creation of the Gulf War Veterans Illness Task Force in 2009 is bold and shows the Department's dedication to our Gulf War veterans. However, with this new Task Force we need to begin to see results. Even though the VA has put forward motions to better serve our veterans, it is not a substitute for results. We all understand the arduous task of ensuring that the proper research and data is collected, but our veterans have waited too long. While I appreciate the VA's attempts to change the culture at the Department regarding Gulf War Illness, there must also be strides to change the care and compensation these veterans have waited so long for. The Department of Veterans Affairs is the second largest agency in our system of government and they must be held accountable for the timely care of our nation's veterans. It is a culture of complacency that doesn't serve anyone, especially our men and women in the armed forces. VA needs to take actions to begin to implement a plan to provide transparency and answers to our Gulf War veterans, and without a unified central VA effort to provide appropriate care to this population, these veterans and their families will have to wait that much longer and grow that much sicker. I trust that this hearing will begin to lay out a unified plan for the care of our Gulf War veterans, as well as instill hope that these veterans are not forgotten and that the promises we made to care for them are kept.
Prepared Statement of Hon. David P. Roe, Ranking Republican Member, Subcommittee on Oversight and Investigations Mr. Chairman, thank you for yielding me time. It is fitting as we approach the twentieth anniversary of the start of Operation Desert Storm and the beginning of the Gulf War that we proceed with this final hearing in our three-part series on Gulf War Illness. On this day, it is important for us to look to the future of care for the veterans who fought and served in this conflict and now suffer from various illnesses from unknown causes. I believe it will be interesting to listen to the views of each of the panels on what they perceive is the cultural perception of Gulf War Illness, as well as both the medical and benefits side of the equation on the care for these veterans. On April 9, 2010, the Institute of Medicine issued its most recent report on Gulf War and Health, which made additional recommendations on how we can best support the veterans from this conflict. I look forward to hearing from Dr. Hauser who chaired the Committee on Gulf War and Health: Health Effects of Serving in the Gulf War, on how VA can use the information in this report to improve care to these veterans, and also to hear what progress VA has made since we last met in July. I am curious to hear VA's response to the Research Advisory Committee's September 2009 report, and what changes are coming about as a result of our hearings, as well as the Advisory Committee's report. We must never forget the reason we are having these hearings. It is to help our nation's veterans. In the past year, we have explored the research behind presumptions, the medical indicators leading to diagnosis or lack thereof, and we learned most importantly that the documentation of undiagnosed illnesses is a large contributor leading to a presumption of Gulf War Illness. I believe we can use the information we have compiled through these hearings to really come to a better understanding of Gulf War Illness, and through that knowledge, better serve these veterans who have sacrificed so much for their country. The information gleaned from the upcoming report from the Secretary's Gulf War Veterans Illnesses Task Force, as well as the reports issued by the Research Advisory Counsel and the Institute of Medicine will help us serve those veterans from the Gulf War. It is my hope that we will also take the lessons learned through these hearings as well as the reports, and apply them to the current OIF/OEF veterans, and future veterans down the road to better serve their needs. I am pleased that VA Chief of Staff John Gingrich has brought with him representatives from both the Veterans Health Administration and the Veterans Benefits Administration, who can respond to the type of care and benefits being provided to our Gulf War veterans, and I look forward to hearing the testimony of all the witnesses. Again, Mr. Chairman, thank you for pursuing this issue, and I yield back my time. Prepared Statement of Donald D. Overton, Jr., Executive Director, Veterans of Modern Warfare Chairman Mitchell, Ranking Member Roe, and Distinguished Members of the Subcommittee on Oversight and Investigations, on behalf of Veterans of Modern Warfare (VMW) National President Joseph Morgan we thank you for the opportunity to present our views on ``Gulf War Illness: The Future for Dissatisfied Veterans.'' My name is Donald Overton and I currently serve as Executive Director for VMW. I testify today from a dual perspective. First, as Executive Director for Veterans of Modern Warfare (VMW) a 501(c)19 National Veterans Service Organization founded in 2006 by Gulf War veterans. VMW represents Active-Duty, National Guardsmen, Reservists and Veterans who have served honorably within our nation's armed forces from August 2, 1990 through a date to be prescribed by Presidential proclamation or law. I also testify as a 100 percent service-connected combat disabled veteran of Operations Desert Shield/Desert Storm. I served with the 3rd Battalion 505th Parachute Infantry Regiment 82nd Airborne Division. While some may view my injuries as devastating, particularly my blindness, I consistently contend I am one of the fortunate warriors that served during this conflict. My conditions, unlike those of so many of my battle buddies, could not be refuted by the Veterans Benefits Administration (VBA), thus affording me access to VA health care and benefits programs. Although I was wounded in the line of duty during combat operations my claims for post-traumatic stress disorder (PTSD), undiagnosed multi- symptom illness (UDX) and various other combat related conditions remain denied by the VBA. I have dedicated the past 16 years to veteran advocacy and representation within multiple veteran service organizations. We have come a long way over the past 16 years, yet the scope of health care and disability challenges facing our Gulf War veterans remains very real and ever increasing. We must act now, with urgency, if we are ever to assist this generation of veterans to get all the way back home after military service. Together we can right the wrongs of the past 20 years and finally stop allowing antiquated systems to steal the lives of our Gulf War veterans. Cultural Perception of Gulf War Illness Nearly 20 years have passed since the start of the deployment and combat operations known as Operations Desert Shield and Desert Storm. Since then, many veterans of that conflict have endured adverse health consequences from the war. Of the 696,842 servicemembers who served in the conflict an estimated 250,000 veterans suffer from the potentially debilitating consequences of undiagnosed multi-symptom illness. We contend these are distinct illnesses and the large numbers of veterans affected have been disenfranchised and underserved by the VA. The excess of unexplained medical symptoms reported by deployed 1990-1991 Gulf War veterans cannot be reliably ascribed to any known psychological disorder. This was recently substantiated by the Institute of Medicine (IOM) April 9, 2010 report ``Gulf War and Health: Volume 8 Health Effects of Serving in the Gulf War.'' Unfortunately, to date, VA has historically failed to recognize this and has consistently emphasized in its research funding, clinician training materials and public statements, that these illnesses were related to stress or other psychiatric disorders, when scientific research indicates otherwise. This apathetic cultural perception of Gulf War Illness (GWI) by VA can and must be changed via fully implemented policy initiatives. The recently convened Gulf War Veterans Illness Task Force (GWVI-TF) within VA is a step in the right direction. The GWVI-TF has the ability to improve coordination within VA overseeing policy, training, research, benefits, and outreach for Gulf War-related issues. The data limitations experienced by the GWVI-TF should serve to establish a mandate to fully fund and resume the Gulf War Veterans Information System (GWVIS) as required by Public Law 102-585. The system was suspended by VA in 2008 due to internal data collection issues, which undermines any notion of transparency in regard to Gulf War veterans and their utilization of VA services. Overcoming the VA's established culture of the past 20 years will not be an easy task, but under Secretary Shinseki's bold leadership and cultural transformation it can be accomplished. Acknowledging the relevance of Gulf War veterans within VA, which has been partially accomplished by convening the GWVI-TF, will also serve to reinvigorate research and medical care for this cohort. Enhanced education of benefit counselors, medical staff and various stakeholders will serve to increase the effectiveness of this cultural transformation. Research VMW urges Congress and the VA to embark upon a multi-faceted approach that recognizes the urgency of understanding GWI causation, as well as finding new treatments for ill Veterans of the 1990-1991 Gulf War. We recommend maintaining funding levels for Gulf War research to at least the $15M per year recommended in the report language of the appropriation bill for VA Medical and Prosthetics Research. We also recommend funding the Congressionally Directed Medical Research Program (CDMRP) to at least the $25M recommended in the report language of the pending FY 2011 NDAA. While research funding is a major concern for Gulf War veterans, oversight and transparency in funding allocations are paramount. VA proclaims participation in Federal research efforts on behalf of GWI totaling more than $152.1 million from VA and $400.5 million in total Federal commitment to date. We contend that these figures are an example of VA R&D spending money on studies only partially or even tangentially related to GWI, then classifying it as GWI spending to beef up annual research and research spending reports to Congress, the Research Advisory Committee on Gulf War Veterans Illness (RACGWVI), and the public. The following is but one example of our concern. Last year, the VA impeded and then canceled a Congressionally mandated contract for unparalleled GWI research at the University of Texas Southwestern (UTSW). This year, the VA has used the Gulf War research funds designated for UTSW to buy an $11 million piece of lab equipment of dubious value to Gulf War veterans. While VA eventually reclassified the Weiner/Tesla equipment buy to ``only'' $5+ million (of the fiscal year's total spending of $8 million) this appears to be crass disregard of moral and ethical principles by those charged to prevent such conduct. To further elaborate, Dr. Michael Weiner of the San Francisco VA Medical Center recently gave a public presentation to the RACGWVI on June 28 entitled, ``Effects of Military Service on the Brain,'' in which he suggested that his research findings show PTSD is the culprit for Gulf War veterans' illnesses, much to the disagreement of many other scientists on the RAC reviewing his results, who noted that he could not even reproduce his own study results. VMW urges Congress and the VA to guarantee the funding allocated to conclude the UTSW study will retrieve any and all data/specimens collected to date and avail said to ongoing GWI research programs. The absolute loss of these materials would be unacceptable and an abuse of taxpayer monies. Continued efforts to resurrect this program would be highly regarded by all Gulf War veterans. If VA continues to refuse, perhaps the CDMRP with VA endorsement will fund. VMW commends the VA for their recently approved $2.8 million to fund three new research projects that focus on testing or developing new treatments for illnesses affecting veterans who served in the 1990- 1991 Gulf War. We hope this shift in funding to treatments will serve to enhance the quality of the lives of those who served during this conflict. We also encourage the VA to consider issuing Requests for Applications (RFA) to regularly request submission of new proposals and revisions of previously reviewed, but not funded, applications. Benefits and Health Care The area of greatest controversy for Gulf War veterans remains the enormous difficulty we face obtaining disability compensation benefits from the Veterans Benefits Administration (VBA). Currently, there are three ``ill-defined'' illnesses that are presumptive for Gulf War veterans. They are: Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), and Irritable Bowel Syndrome (IBS). We believe that these presumptions are appropriate, and are consistent with countless peer-reviewed scientific studies that have concluded that these conditions and/or their symptom sets have high, unusual prevalence among veterans of the 1990-1991 Gulf War. The first of three presumptive conditions for Gulf War veterans, Chronic Fatigue Syndrome (CFS), can currently be rated as high as 100 percent depending upon the level of debilitation. We believe this is appropriate and should remain as it is. However, the second of the three conditions, Fibromyalgia (FM), can only be rated at a maximum of 40 percent under the current rating schedule, even though chronic fatigue and other debilitating symptoms can be totally and permanently disabling. And, because CFS is a diagnosis of last resort, a diagnosis of FM excludes a diagnosis of CFS, even if the veteran is clearly suffering from both debilitating chronic widespread pain and debilitating chronic fatigue. In other words, veterans who may be the worst off can only receive a maximum 40 percent rating if they have the diagnosis of FM, even with all the symptoms of CFS. VA should review these contorted rules so that veterans with FM can be rated as high as 100 percent, depending upon the level of debilitation. For the third of the three current presumptive conditions, Irritable Bowel Syndrome (IBS) can be rated to a maximum rating of 30 percent. This rating can be made in conjunction with a rating for CFS or FM (but not both, as previously stated). VA should also review the rules governing the maximum rating for this condition to allow for higher ratings relative to the actual level of debilitation. Individual ``undiagnosed'' symptoms are still the basis of Gulf War veterans chronic multi-symptom illness claims, making it incredibly difficult for these veterans to be found substantially or totally disabled for their multi-symptom illness. Addressing this issue, so that these veterans could be rated for their entire multi-symptom illness rather than reviewing and approving individual undiagnosed symptoms and the defined illnesses (CFS, FM, IBS) one by one would save VA hours of time on each Gulf War veteran's claim and help countless veterans get better, more logical, and more appropriate claims results. VMW urges Congress to consider expanding VA regulations which authorize a rating of total disability based on individual unemployment if a veteran is unable to obtain, or maintain, substantially gainful employment because of service-connected disabilities. This is an extra- schedular benefit resulting in compensation paid at the 100-percent schedular rate for veterans who have been awarded a single 60-percent or a combined 70-percent disability rating and are unable to work as a result of their service-connected disability. The benefit is also available based on a VA administrative review, if the schedular requirements are not met. For those Gulf War veterans presenting with two or more presumptive, or multi-symptom undiagnosed illnesses, VBA should automatically trigger an administrative review and apply the extra-schedular benefit when warranted. VMW believes Congress should enact legislation granting a presumption of service connection for our Gulf War veterans who deployed to the war zone and who are diagnosed with auto-immune diseases, such as Multiple Sclerosis (MS), and Parkinson's disease. Additionally, VBA must identify the estimated 15,000 Gulf War veterans previously denied disability compensation for Fibromyalgia, Chronic Fatigue, and Irritable Bowel Syndrome from 1991 through 2010 that should have otherwise been granted benefits by Public Law 107-103. When approved, VBA benefits should be retroactive to 2001. Additionally, VMW urges Congress to enact legislation granting indefinite presumptive eligibility for undiagnosed illness for our Gulf War veterans. Please remove all sunset provisions in 38 U.S.C. Sec. 1117 and 38 U.S.C. Sec. 1118, so health care and benefits are for the life of every Gulf War veteran and every surviving beneficiary. 38 CFR Sec. 3.317 requires a change to clarify the law's intent with respect to compensating veterans with Gulf War-related disabilities. Current claims processing procedures for VBA Regional Office personnel and C&P examiners do not specify the unique circumstances surrounding the handling of claims related to multiple environmental exposures. While accessing benefits has proven to be a daunting challenge for Gulf War veterans, gaining access to the Veterans Health Administration (VHA) is equally challenging. Often, this access is contingent on VBA granting disability benefits. Extending health care to Gulf War veterans at the VHA by automatically enrolling all servicemembers who deployed since August 2, 1990 into Priority Group Six at the time of their discharge would ensure our veterans can obtain care as treatments and research evolve. Additionally, the outdated clinician training programs still posted to VA's Gulf War website have the capacity to do more harm than having nothing at all. VMW strongly recommends VA immediately remove these training materials until new ones can be developed and put in place. The new training materials should be reviewed and approved by the RACGWVI, ensuring Gulf War examinations follow a uniform best practices protocol. VMW strongly urges VHA to develop and implement a full military history feature within the new electronic medical records. The current Gulf War registry is nothing more than a mailing list and lacks the ability to function as an epidemiological medical tool. The new military history feature can be utilized by primary care providers to track potential environmental exposure trends enhancing treatment options, as well as validating potential exposures for the VBA, thus expediting claims processing time and accuracy. Longitudinal studies can then be initiated to further understand exposure patterns across time. Education and Outreach The Veterans Health Administration (VHA) utilizes a series of clinician training programs, titled Veterans Health Initiative (VHI), to prepare clinical staff to treat veterans. The understanding of Gulf War Illnesses has grown over time, but there is much yet to be learned. The wide range of illnesses and multisystem manifestations pose significant challenges to VA's capacity to maintain clinicians' proficiency and familiarity. VA health care is not always responsive to the needs of Gulf War veterans because health care providers are not fully educated on managing the Gulf War veterans' health-related needs or their potential hazardous exposures. Major revision of training materials for all VA providers is warranted. Although each VA Medical Center (VAMC) provides access to environmental health clinicians and coordinators, there is variability in knowledge and practice among VAMCs as to when and how to conduct exposure assessments. There are few subject matter experts in exposure- related disease within the VA system. Many providers may not be trained to recognize or diagnose exposure-related disease, nor are they aware of the types of exposures typically encountered in the combat theater especially in South West Asia. Expansion of the VA War Related Illness and Injury Study Center's (WRIISC) referral processes, enabling more veterans to be evaluated and eventually treated for their environmental exposures should be considered as a viable solution to the limited subject matter experts within VAMCs. Additional training is needed for VA Regional Office (VARO) personnel on proper application of law governing disability benefits for Gulf War veterans. The training should focus on issues related to adjudicating disability claims based on Gulf War undiagnosed illnesses and medically unexplained chronic multi-symptom illnesses, as defined by law. The laws directing benefits for disabilities resulting from Gulf War service are found at 38 U.S.C. Sec. 1117 and 38 CFR Sec. 3.317. Additionally, the requirement for Gulf War veterans to provide new and material evidence to substantiate their undiagnosed illnesses and medically unexplained chronic multi-symptom illnesses should be eliminated. The absence of open lines of communication can quickly lead to misinformation, mistrust, and confusion. There is a general lack of knowledge within the veteran community about the recent modifications to the rating schedule and presumptions related to Gulf War veterans' illnesses. This lack of knowledge includes those that serve the veteran population, VA employees. The current VA system for informing veterans of such changes does not reach the entire affected community. New methods of communication are needed immediately. Traditionally, VA relied upon the Gulf War Review to inform Gulf War veterans of all things relevant to this cohort. Unfortunately, VA has failed to publish this resource consistently, if at all. The current VA Gulf War website should be more interactive for 1990-1991 Gulf War veterans, to both educate and inform potentially eligible beneficiaries and stakeholders about Gulf War veterans' illnesses, benefits and services. This interactive site should be equipped with a human element (a Gulf War veteran, or veterans capable of responding to inquiries), not just a dumping ground of data. Websites with no human capacity are not outreach mechanisms and should not be confused as such. Resources designed specifically for Gulf War veterans should be updated and made available at all VA facilities to include; VA Medical Centers, Community Based Outpatient Clinics, Vet Centers, Regional Offices and service delivery points for homeless veterans and veterans re-entering society after incarceration. Consideration should be given to digitizing these resources and making them available on an external keychain-sized flash memory device with a USB interface. Attention should be given to historic dates relevant to Gulf War veterans with coinciding public service announcements and outreach campaigns aimed at welcoming Gulf War veterans to VA facilities for ``stand down'' like events. VA's Gulf War Task Force Report In March 2010, a final draft of the Gulf War Veterans Illness Task Force (GWVI-TF) report was released for public comment to ensure the needs of Gulf War veterans were being met and improve their level of satisfaction with VA services. The report outlined seven areas where VA can improve upon their current level of services to this cohort. These areas include; partnerships, benefits, clinician education and training, ongoing scientific reviews and population based surveillance, enhanced medical surveillance of potential hazardous exposures, research and development and outreach. We addressed these areas in our testimony, but would like to elaborate on some potential general shortcomings of the report. First, there appears to be an over dependence on the ability of VA and DoD to work effectively in regard to mitigating environmental exposures for past, present and future generations of veterans. DoD's ongoing denial of Gulf War veteran exposures, coupled with the inability of each agency to effectively communicate data via electronic medical records and various other data sharing initiatives, bodes badly for the effectiveness of this strategy. Should DoD fail to fulfill their obligation will VA subsequently be allowed to shun their responsibilities? Second, the Gulf War Veterans Illness Task Force, which was convened by Secretary Shinseki, appears to dissolve with the appointment of a new Secretary. What faith, if any, should Gulf War veterans have in the ability of the Department of Veterans Affairs to carry on this initiative across time? Will we ever see any of the report's outcome measures, or are we once again being led astray? There must be some level of permanence in order to have any confidence in the report. Many of the findings will require significant time commitments and followthrough. Third, due to significant limitations in the VA's Gulf War Veterans Information System (GWVIS) and the reports generated from the various data sources used by GWVIS, it is extremely difficult to accurately portray the experiences of this 1990-1991 Gulf War cohort/group and their respective disability claims or health care issues. It would appear that the report is based solely on the perceptions of Task Force members, which obviously limits the credibility of the report's findings. Conclusion Mr. Chairman, VMW again thanks you for this opportunity to express our views here today, and will be pleased to answer any questions you or your distinguished colleagues may have. Prepared Statement of Ian C. de Planque, Deputy Director, Veterans Affairs and Rehabilitation Commission, American Legion 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 servicemembers, 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. Servicemembers 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 servicemembers 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, servicemembers 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 servicemembers 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 servicemembers just remained in their NBC protective clothing (except the mask and gloves) between alarm activations. It was almost a ``crying wolf'' situation-- servicemembers 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. Explosions 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 servicemembers. 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 professionals. Some ill servicemembers were prescribed medications such as Prozac or other mood altering drugs. Some servicemembers were even accused of malingering. Some servicemembers 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 names 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 servicemembers 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 servicemembers 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 presence of chemicals 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 U.S. servicemembers was validated via video footage taken by an ill servicemember. ``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 conditions 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. Prepared Statement of Paul Sullivan, Executive Director, Veterans for Common Sense Veterans for Common Sense (VCS) thanks Subcommittee Chairman Mitchell, Ranking Member Roe, and Members of the Subcommittee for inviting us to testify about our recommendations for improving government policies for our nation's 250,000 ill Gulf War veterans. Congress remains a loyal friend of our Gulf War veterans by holding hearings, passing legislation, and conducting vital oversight hearings. With me today is my good friend Steve Robinson, a fellow Gulf War veteran and the former Executive Director at the National Gulf War Resource Center, a position I once held. Also with me is Thomas Bandzul, our VCS Associate Counsel. Steve, Thomas, and several ill Gulf War veterans assisted VCS with preparing this statement. VCS is here today because Gulf War veterans are dissatisfied and disappointed with the actions of the Department of Veterans Affairs (VA). VA is not listening to our concerns about our illnesses associated with our deployment to the 1991 Gulf War. VA does not listen to advisory panels created by Congress or VA. VA does not listen to expert scientists. VA does not even listen to Congress. Two decades of inaction have already passed. Gulf War veterans urgently want to avoid the four decades of endless suffering endured by our Vietnam War veterans exposed to Agent Orange. VA's actions are unfortunate and disastrous for our nation's 250,000 ill Gulf War veterans. Veterans for Common Sense sends up a red star cluster for Congress, VA, and America to see. In military terms, VCS asks VA for cease fire. VCS urges VA leadership to stop and listen to our veterans before time runs out, as VA is killing veterans slowly with bureaucratic delays and mismanaged research that prevent us from receiving treatments or benefits in a timely manner. VCS is here urging VA to issue regulations so Gulf War veterans can learn why we are ill, obtain medical care, and receive disability benefits for our medical conditions scientists agree are associated with our Gulf War deployment during 1990-1991. After 20 years of war, we are done waiting. VCS urges VA to act now and provide research, treatment, and benefits. As a Gulf War veteran, I have watched too many of my friends die without answers, without treatment, and without benefits. In a few cases, veterans completed suicide due to Gulf War Illness and the frustration of dealing with VA. VCS asks Congress and VA to keep this in mind when evaluating VA policies. Our statement contains a copy of our formal petition to VA Secretary Eric Shinseki urging to VA promulgate regulations under the Administrative Procedure Act (5 U.S.C. Section 551) so our veterans can obtain answers to the questions about why 250,000 veterans remain ill, treatment for veterans' conditions, and benefits so our veterans do not fall through the economic cracks due to disabilities. VCS asks Congress to intervene if VA fails to act now. VCS asks Congress to continue holding oversight hearings and to pass legislation to implement our petition if VA continues ignoring the needs of our veterans, ignoring the laws passed by Congress, and ignoring the peer- reviewed and published findings of our nation's top scientists. Gulf War Illness VCS is here today urging action by Congress because the scope of the healthcare and disability challenges facing our Gulf War veterans is real and increasing in size. VA officially reports 265,000 of the veterans deployed between 1990 and 1991 sought medical care and 248,000 filed disability claims by 2008, the last time VA released official statistics about veterans from the 1991 conflict. VCS estimates VA spends up to $4.3 billion per year for Gulf War veterans' medical care and benefits. However, VA has never actually revealed the financial costs, and VA has indicated no intention the agency plans to release those facts. VA's failure to release information about the human and financial costs of war reveal VA remains without the fundamental facts needed to monitor Gulf War veteran policies. In 2008, VA's Research Advisory Committee on Gulf War Veterans' Illness (RAC) estimated as many as 210,000 Gulf War veterans suffer from multi-symptom illness. In 2009, the Institute of Medicine (IOM) agreed the exposures and illnesses are real, impacting as many as 250,000 veterans of the 1991 invasion of Iraq. Both the RAC and IOM studies were mandated by the ``Persian Gulf Veterans Act of 1998.'' Gulf War veterans are hoping for improvements with the new administration. In August 2009, VA created a new Gulf War Task Force under the leadership of Gulf War veteran and VA Chief of Staff John Gingrich. We look forward to VA's testimony today with the hope that VA will offer new, substantive regulations for our Gulf War veterans who need answers, healthcare, and benefits. We do thank VA for taking the precedent-setting initiative of proposing policy via the Federal Register on April 1, 2010. VCS submitted detailed comments to VA about the Draft Task Force report on May 3, 2010. However, VCS recommendations to VA's Chief of Staff John Gingrich appear to have fallen on deaf ears. The only VA action since January 2009 was a paltry $2.8 million for stress research announced on July 21, 2010. Only VA's Research Office, in a vacuum without input, wants this research. VA's systemic failures reveal significant problems remain at VA. If VA Secretary Shinseki won't fix VA's Research Office, then Congress must intervene and place Gulf War research outside of their area of responsibility. VCS also urges Secretary Shinseki to investigate the improper and arbitrary termination of essential Gulf War Illness research. A July 15, 2009 VA IG report concluded $75 million in Gulf War Illness research at the University of Texas Southwestern Medical Center (UTSW) was ``impeded'' by VA (page iv, IG ``Review of Contract No. VA549-P- 0027''). Without any reasonable scientific basis, VA arbitrarily terminated UTSW research, potentially undermining more than 15 years of critical inquiry. VCS remains outraged VA's Research Office has not been held accountable. On November 19, 2009, VCS filed Freedom of Information Act (FOIA) requests with VA to determine the extent of the VA internal sabotage. VA has not released any information about who ``impeded'' Gulf War Illness research. On June 29, 2010, VCS filed a formal appeal under FOIA with VA's General Counsel to obtain documents about the cabal of VA staff intentionally delaying research and treatment for our veterans. VCS also urges VA to investigate the adverse health impact of depleted uranium, a radioactive toxic waste used as ammunition. On August 19, 1993, then-Army Brigadier General Eric Shinseki signed a memorandum confirming that on June 8, 1993, the Deputy Secretary of Defense ordered the Army Secretary to ``Complete medical testing of personnel exposed to DU contamination during the Persian Gulf War.'' No medical testing was performed. VCS urges VA Secretary Shinseki to take the rare opportunity for a second chance and complete the research ordered 17 years ago. In February 2010, VCS President Dan Fahey requested DU research during a conference call with VA Chief of Staff John Gingrich. To date, VA has not conducted DU research. Third, other than a VA-VCS conference call in February 2010, VA has excluded Veterans for Common Sense from participating in any meaningful, consistent dialog on the issue of Gulf War Illness. The communication from VA is almost always one direction: telling veterans what VA will do with little or no input from veterans until after VA has reached a final, irreversible decision. VA's continued insulation is the main reason why VCS urges VA to create a permanent Gulf War Veteran Advocacy office. Conclusion The needs of our veterans are detailed in two decades of scientific research reviewed by the RAC and IOM as well as countless Congressional investigations, hearings, and reports. However, VA's Research Office has failed Gulf War veterans for two decades. This absolutely vital hearing represents VA's last chance to get it right so Gulf War veterans have a reasonable chance at answers, treatments and benefits in our lifetime. After 20 years of waiting, we refuse to wait on more empty promises from VA. The first step is for Secretary Shinseki and Chief of Staff Gingrich to immediately clean house of VA bureaucrats who have so utterly and miserably failed our veterans for too long. Our bottom line is clear: we urge VA Secretary Shinseki to quickly implement the recommendations we make in our petition sent to VA today. If VA does not immediately take action, we urge Congress to continue holding hearings and passing legislation so VA is held accountable for taking care of our veterans. Our waiting must end now. VCS presented the following petition to VA for new Gulf War veteran regulations: VCS Petition to VA to Improve Regulations for Gulf War Veterans Veterans for Common Sense Washington, DC. The Honorable Eric Shinseki Secretary Department of Veterans Affairs 810 Vermont Avenue, NW Washington, DC 20420 Dear Secretary Shinseki: Under the Administrative Procedures Act (5 U.S.C. Section 551), Veterans for Common Sense (VCS) petitions the Department of Veterans Affairs (VA) to promulgate regulations to improve the delivery of healthcare and benefits for the 3.1 million U.S. servicemembers deployed to Southwest Asia since August 2, 1990. VCS supports the goals of VA leaders to ensure our Gulf War veterans receive answers to the questions about why Gulf War veterans remain ill as well as prompt access to treatment for our medical conditions and disability benefits. We thank you for forming a Gulf War Task Force and for naming your Chief of Staff, John Gingrich, a Gulf War veteran, to lead it. VCS asks VA to issue regulations based on these laws: Public Law 102-1, enacted on January 14, 1991, authorized the President to start the Persian Gulf War, known at the time as Operation Desert Shield and Desert Storm. Offensive U.S. military action against Iraq began on January 17, 1991. Public Law 102-25, enacted on April 6, 1991, retroactively established the start date of the Gulf War as August 2, 1990, the date Iraq invaded Kuwait. Neither Congress nor the President have ever ended the Gulf War, and the conflict continues through the present in the geographical area defined by 38 CFR 3.317. Public Law 102-85, enacted on November 4, 1992, authorized the creation of the Gulf War Registry as well as the Gulf War Veterans Information System (GWVIS). VA began preparing GWVIS reports in 2000, and VA ceased producing the reports in 2008 after VCS observed that VA's GWVIS reports were incomplete. VA has since confirmed that it failed to update computer programming to identify all disabled Gulf War veterans. Public Law 103-210, enacted on December 20, 1993, requires VA to provide healthcare on a priority basis (Priority Group 6). Public Law 103-446, enacted on November 3, 1994, expanded access to VA disability benefits so ill Gulf War veterans could obtain VA medical care under what is commonly referred to as the Undiagnosed (UDX) illness law. Congress found, as a matter of law, Gulf War veterans were exposed to a long list of toxins, including depleted uranium: Fumes and smoke from military operations, oil well fires, diesel exhaust, paints, pesticides, depleted uranium, infectious agents, investigational [experimental] drugs and vaccines, and indigenous diseases, and . . . multiple immunizations. Public Law 105-277, enacted October 22, 1998, significantly expanded the list of toxins it presumed Gulf War veterans were exposed to during deployment to Southwest Asia, and mandated contracts between VA and the National Academy of Science's Institute of Medicine (IOM) to determine if there were associations between deployment and medical conditions suffered by Gulf War veterans. Public Law 105-368, enacted November 11, 1998, created the Research Advisory Committee on Gulf War Veterans' Illness (RAC) and expanded Public Laws 103-210 and 103-446. VA was unable to form the RAC until 2002. Public Law 109-114, enacted November 20, 2005, appropriated $75 million for Gulf War Illness research at the University of Texas Southwestern Medical Center (UTSW) because VA staff steadfastly refused to conduct research into the adverse impact of toxic exposures by claiming veterans were not exposed, not ill, and suffering only from stress. VA objected to the use of a contract to implement this law. However, VA made no effort to convert the contract to grant, thereby revealing VA opposed the research. VCS List of Ten Recommended VA Actions Regarding Gulf War Veterans 1. VA Regulations Acknowledge Scope and Nature of Gulf War Illness When VA issues regulations regarding Gulf War Illness, VCS urges VA to confirm 250,000 Gulf War veterans from the 1990-1991 deployment period remain ill after deployment to Southwest Asia during 1990-1991, a conclusion supported by thousands of peer-reviewed scientific articles. VA should specifically cite the following three major sources: IOM: April 2010 findings of the Institute of Medicine (IOM), ``Gulf War and Health: Volume 8. Health Effects of Serving in the Gulf War.'' After an exhaustive review of peer-reviewed, published research, the IOM concluded as many as 250,000 Gulf War veterans still suffer from multisymptom illness, and the cause is not post-traumatic stress disorder (PTSD): ``The excess of unexplained medical symptoms reported by deployed Gulf War veterans cannot be reliably ascribed to any known psychological disorder.'' RAC: November 2008 report by the Research Advisory Committee on Gulf War Veterans Illnesses (RAC), ``Gulf War Illness and the Health of Gulf War Veterans: Scientific Findings and Recommendations,'' concluded that between 175,000 and 210,000 Gulf War veterans still suffer with multisymptom illness. VA: Dr. Han Kang, is credited with the important conclusion that one-in-four Gulf War veterans remains ill, in his study, ``Health of U.S. Veterans of 1991 Gulf War: A Follow-Up Survey in 10 Years,'' published in the Journal of Occupational and Environmental Medicine in April 2009. 2. VA Issues Improved Undiagnosed Illness (UDX) Regulations VCS supports the goals of VA's new instructions on handling Gulf War veterans' claims for Undiagnosed Illness (UDX) benefits. VCS asks VA Secretary Shinseki to use his rule-making authority to transform VA's temporary instructions issued in a ``Fast Letter'' as permanent VA regulations that can be reviewed and commented on by advocates in a transparent manner. In 2002, VA staff conducted a thorough review of granted and denied claims among Gulf War veterans at the diagnostic code level. VA staff concluded that VA regional offices with large claim backlogs and without training on UDX claims under 38 CFR 3.317 approved few (about 4 percent) of Gulf War veterans claims. In contrast, VA regional offices with small backlogs that received training from VA Central office approved far more UDX disability benefit claims (about 30 percent). At present, VA has no idea how many UDX claims have been granted or denied. 3. VA Notifies As Many Gulf War Veterans as Possible About Changes Using VA's Gulf War Master Record listing of nearly all military servicemembers, VA should mail information to each veteran where VA has an address. And VA should use all available national and local VA public relations staff to conduct outreach to the media and veterans about changes in laws and regulations. The information should include a brief description of presumed toxic exposures, research, treatment, and benefits. 4. VA Pays Retroactive Benefits for UDX Claims VA should re-open the disability claim of any Gulf War who asks. VA should pay, when appropriate, retroactive benefits to the earliest possible date allowed under the law starting with the veteran's first claim against VA. VA should do this based on VA's illegal act, in 2001, of failing to notify Gulf War veterans about changes in benefits laws (Public Law 107-103) that would have granted access to healthcare and disability compensation for tens of thousands of veterans. VA's act was illegal because it violated the spirit and intent of the Veterans Claims Assistance Act, where VA is obligated to help veterans with compensation and pension claims. VA should also consider paying any out-of-pocket expenses veterans incurred due to VA's deliberate policy of failing to notify veterans about the change in law and VA regulations. 5. VA Requests Permanent Gulf War Veteran Advocacy Office VCS urges VA to create a permanent Gulf War Veteran Advocacy Office and staff it with at least five ill, previously deployed Gulf War veterans among a staff of at least nine. The office will serve as the sole clearing house coordinating all Gulf War veteran related matters, reporting directly to the Secretary. Staff will provide input and monitor research, advisory panels, treatment trials, benefit programs, and outreach. VA leaders need a permanent, pro-veteran office to avoid repeating past mistakes. In our view, the needs and voices of Gulf War veterans have been excluded for too long, especially when VA's Research Office intentionally ignores both veteran and scientific input. 6. VA Expands Definition of Gulf War Service VCS asks the Secretary to use his rule-making authority to update the definition of Gulf War service so it is accurate and conforms with the actual war zone nations and bodies of water where our servicemembers deployed to conflicts on or after August 2, 1990, the official start of the Gulf War. VA should add Turkey to the list of nations shown in CFR 3.317. DoD records indicate tens of thousands of U.S. servicemembers supporting the 1990-1991 Gulf War and subsequent military operations through the present were based in Turkey. The military also lists Turkey as an eligible deployment location for the Southwest Asia Service Medal (SWASM). However, VA excluded Turkey from the definition of the Gulf War theater of operations. VCS urges VA to add Operation Enduring Freedom (the Afghanistan War, including all nearby nations and bodies of water) as well as Operations Iraqi Freedom and New Dawn (the Iraq War) to the definition of the Gulf War deployment zone so there is no confusion when VA staff are making healthcare and benefit eligibility determinations. 7. VA Benefit Eligibility Covers All Deployed Troops Since August 2, 1990 VA should apply scientific findings from IOM, RAC, or other research studies to apply to all veterans deployed to the war zone since August 2, 1990. For example, when a study finds an association for a condition for Operation Desert Storm veterans, then VA regulations should apply to all 3.1 million servicemembers deployed to the war zones since August 2, 1990. 8. VA Issues New Regulations for Multisymptom Illness VCS asks VA Secretary Shinseki to use his rule-making authority to promulgate new regulations expanding disability compensation benefits to veterans with multisymptom illness. In April 2010, the IOM concluded that as many as 250,000 Gulf War veterans remain ill with multisymptom illness associated with their deployment to Southwest Asia. In November 2009, the RAC reached a similar conclusion. Based on scientific evidence, if a Gulf War veteran can show they were deployed to the Gulf War theater on or after August 2, 1990, and if the Gulf War veteran has a diagnosis of a multisymptom condition, then VA should automatically grant disability benefits and access to medical care. 9. VA Issues New Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Regulations VCS asks Secretary Shinseki to use his rule-making authority to amend the VA benefits rating manual as it pertains to three chronic multisymptom illnesses presumptive for Gulf War Veterans under 38 CFR 3.317. The first of the three presumptive conditions, Chronic Fatigue Syndrome (CFS), can currently be rated as high as 100 percent depending upon the level of debilitation. VCS agrees CFS ratings should go up to 100 percent because CFS can be totally disabling. However, Fibromyalgia (FM) can only be rated at a maximum of 40 percent under current VA rules, even though it can be totally and permanently disabling. Since CFS is a diagnosis of last resort, a diagnosis of FM excludes a diagnosis of CFS, even if the veteran is clearly suffering from both debilitating chronic widespread pain and debilitating chronic fatigue. Veterans who may be the worst off may only receive a maximum 40 percent FM rating, even with all the symptoms of CFS. VCS calls for Secretary Shinseki to review these contorted rules so that veterans with FM can be rated as high as 100 percent, depending upon the severity of symptoms and the level of disability. Currently, Irritable Bowel Syndrome (IBS) can only be rated currently to a maximum rating of 30 percent. An IBS rating can be made in conjunction with a rating for CFS or FM (but not both, as previously stated). VCS asks Secretary Shinseki to also review the rules governing the maximum rating for IBS condition to allow for higher ratings relative to the actual severity of symptoms and the level of disability. 10. VA Issues New Regulations for Upper Respiratory, Lower Respiratory, Digestive, and Neurological Conditions Based on scientific evidence, VCS asks Secretary Shinseki to issue regulations and grant presumptive service-connection for upper and lower respiratory, digestive, and neurological conditions to grant presumptive service-connection for these conditions, including but not limited to Gastro-Esophageal Reflux Disease (GERD), diagnosed respiratory disorders including but not limited to asthma, bronchitis, bronchiolitis, and chronic obstructive pulmonary disease (COPD), and diagnosed neurological disorders involving pain, cognition, and other widely reported symptoms among Gulf War veterans. In practical terms, this action item is of enormous significance to ill Gulf War veterans without access to VA care because they are not service-connected. Our goal in requesting new regulations is to allow VA to grant service connection for these conditions so our ill Gulf War veterans can receive the VA medical care they need and earned for conditions scientists concluded are associated with their military service. VCS respectfully asks VA to respond, in writing, to our formal VCS petition in a timely manner so Gulf War veterans can have the answers they seek, the treatment they need, and benefits they earned without further delay. Sincerely, Paul Sullivan Executive Director Prepared Statement of Hon. Charles L. Cragin, Chairman, Advisory Committee on Gulf War Veterans, U.S. Department of Veterans Affairs Good morning, Mr. Chairman, Ranking Member and Committee Members. Thank you for the opportunity to discuss with you the findings of the Department of Veterans Affairs (VA) Advisory Committee on Gulf War Veterans and our recommendations for improvements. I had the honor of serving as Chairman of this Advisory Committee throughout its tenure from April 2008 through September 2009. It was a privilege to serve with the fine men and women of this Committee. As you know, the Committee was chartered by the Secretary of Veterans Affairs to examine the health care and benefits needs of those who served in the Southwest Asia theater of operations during the 1990-1991 period of the Gulf War and to advise the Secretary on the issues that are unique to these veterans. I should emphasize that the Committee saw its assignment to conduct information gathering, assess the current situation, and then provide advice to the individual who requested it, namely, the Secretary of Veterans Affairs. I would like to recognize the VA for the work it has done with respect to the Gulf War Task Force. I was encouraged to find many of the recommendations of the Committee referenced within the action plans. I look forward to the VA implementing the plans it has outlined and offer my support and assistance in reaching our shared goal of improving service and benefits to Gulf War and all veterans. During its tenure, the Committee held eight public meetings in Washington, DC; Baltimore, MD; Seattle, WA; and Atlanta, GA. Due to the lack of reliable data concerning Gulf War I veterans, the Committee was forced to base the majority of its findings on scattered scientific research and anecdotal information. Because of the reliance on such information, the Committee took extra efforts to contact veterans, both users of VA services and those who did not use VA services, and invited them to come before the Committee and report on their personal experiences. The Committee, in an additional effort to open communications, broadcast its meetings over toll-free telephone lines and maintained an active, up-to-date Committee web site. In general, the Committee's findings are summed up in the title of its report: Changing the Culture: Placing Care Before Process. This was a resounding theme, pockets of people trying to do their best, stymied by process or lack of vital information. Many of those who came to VA in the early days after Gulf War I were turned away. In many cases, health care professionals were not able to connect the symptoms experienced by these veterans to defined or known illnesses. Consequently, veterans were not able to access medical care and treatment and their claims for service-connected disabilities were often denied. The process served as an impeding wall preventing veterans who were hurting from getting over the wall to take advantage of the care they needed and deserved. Consider for a moment that all of the fine men and women were considered in excellent health and ``deployable'' when they went to war. In many instances, shortly after their return home, these veterans began complaining of feeling ill and seeking help. Many were turned away as ``malingerers'' or having a ``psychosomatic illness.'' Why did a department of government designed to care for veterans not identify that something was happening to men and women who had recently been healthy who now were sick, the common denominator being that they had deployed in Gulf War I? The process should have been constructed in such a way that these folks could have immediately been welcomed into the system, rather than rejected because the process required a diagnosable service connection. These veterans were not engaged in a massive, national conspiracy to defraud the government. Rather, they were sick, sought help, and in many instances were rebuffed by the agency established to care for them. The ``Process'' became a wall, rather than a door. The Committee has discovered many programs and initiatives within the Department of Veterans Affairs to assist Gulf War I veterans. Unfortunately, these programs and initiatives are not easy to find and it is often incumbent upon the veteran to ask the ``right question.'' This is not how these men and women should be treated. As the Committee observed, ``newer approaches to more systematic health evaluation of servicemembers' pre- and post-deployment and newer approaches to more effectively organizing and integrating care and benefits for veterans with health problems have been very beneficial for veterans of more recent conflicts, but have not been inclusive of Gulf War I veterans. There is a clear need to move beyond the somewhat narrow and restrictive confines of treating diagnosable illness to addressing the broader functional limitations which remain as ongoing problems requiring health and social interventions.'' As I mentioned, the lack of data contributed to the frustration of the Committee and prevented us from conducting any substantive analysis. The Committee discovered that the one database that had come to be relied upon as the authoritative source of information, the Gulf War Veterans Information System, had been corrupted. To date, the issues with this data system have not been addressed. The last valid report to be generated by the system was in February 2008. Gulf War I veterans view themselves as the forgotten era of veterans. Because the military operations were relatively short and successful, the residuals of the war were not at the forefront of the American consciousness. They are a relatively small group by war era standards and are easily eclipsed by the larger, more vocal coalitions of veterans. Because these veterans are not uniquely identified in VA systems and databases, many who work for VA may have no idea who these veterans are nor have VA employees been educated in the special issues related to this deployment. The Committee had the opportunity to meet with Dr. Steve Hunt in Seattle and see first hand the Post-Deployment Integrated Care clinic VA had there. The Committee was impressed with the model of integrated care designed to recognize and respond to the post-combat needs of veterans. The Committee recommended that Gulf War I veterans be included in the Post-Deployment Integrated Care Initiative and that VA track and evaluate the utilization and effectiveness of the program for Gulf War I veterans. The Committee further recommended that individuals with training in neurology and neuropsychology be included on the integrated care team. In the alternative, the Committee felt that the Department may want to consider expanding the current Environmental Agents Service to perform clinical evaluations of Gulf War I veterans. Concerns about the health of these veterans and the consequences of their exposures continue to exist today. The Institute of Medicine continues to issue reports on Gulf War and Health and I encourage VA to respond to these reports in a timely manner and to establish new presumptions as they are warranted. VA should keep in mind that the difficulty in determining the causes of the illnesses experienced by Gulf War I veterans has contributed to the ongoing lack of treatments. Gulf War I veterans want to be healthy. The Committee developed several recommendations contained in the report. I will not go into all of them in this testimony, but on behalf of the Committee I ask that the entire report be submitted for the record. I would like to take this opportunity to briefly highlight a few more of the recommendations contained in the report. The Committee recognizes that a culture change is necessary within VA and that such a change does not happen overnight. The Committee recommended, as part of the foundation of the transformation effort underway, that VA implement special programs to educate VA and contract medical personnel on Gulf War I medical issues, research, and regulations. To improve care and the delivery of benefits, staff needs to be aware and knowledgeable about medical issues that may be related to service in the Gulf War. Training of staff should be mandatory and conducted annually. An educated work force will serve to assist veterans as they navigate VA's complex system of health care and benefits. The Committee also recommended that the end date for the presumptive period for compensation for Undiagnosed Illness in Gulf War I veterans be extended indefinitely. The presumptive period for compensation for undiagnosed illness in Gulf War I veterans will expire on December 31, 2011. This presumptive period demonstrates VA's recognition that, although not yet officially named, Gulf War I veterans are experiencing adverse health consequences. There are servicemembers who fought in Gulf War I who have not left service yet, and who may experience these same symptoms in the coming years. VA should not confine Gulf War veterans to a timetable not supported by medical science. Veterans must receive the benefit of the doubt with respect to undiagnosed illness while VA awaits the conclusions of Gulf War Illness research. Technology can also help bridge the gaps. The Committee recommended mandatory clinical reminders be established in the system to trigger VA medical professionals to ask specific follow-up questions for Gulf War I veterans. This would require that Gulf War I veterans have a unique identifier in the VA system. VA should also build upon the good work begun early in its response to Gulf War I. VA should contact veterans who participated in the original Gulf War Registry Exams and invite them back for follow-up exams. This will not only be beneficial to the veterans, but provide valuable information about the evolution of Gulf War I veterans physical and mental conditions over the past 18 years. With respect to outreach, VA has a real opportunity to try to make up for the lack of outreach and awareness that has been afforded this cohort of veterans. VA should use the 20th anniversary of the Gulf War as a positive opportunity to attract Gulf War I veterans back to the VA. VA should increase its responsiveness to veterans and other stakeholders. The Committee experienced a number of delays in getting responses from VA on questions pertinent to our charge. Again, this had a negative affect on the analysis and review we were able to conduct. In general, VA learned many valuable lessons from Gulf War I veterans and those lessons have substantially improved the treatment received by Operation Iraqi Freedom and Operation Enduring Freedom (OIF/OEF) veterans today. VA needs to include Gulf War I veterans in the improved programs and initiatives it offers returning OIF/OEF veterans. Obviously, the report, in its entirety, represents the work of the Committee and the direction which it has recommended that the Department travel in its mission to serve Gulf War I veterans. Recently, the Department of Veterans Affairs provided a written response to the recommendations made by the Committee. I would like to thank VA for its responses and encourage VA to continue efforts to improve benefits and services to Gulf War I veterans. Thank you for inviting me to participate in this hearing representing my colleagues on the Committee. I am available to answer any questions you may have. Prepared Statement of Stephen L. Hauser, M.D., Professor and Chair of Neurology, University of California, San Francisco, School of Medicine, and, Chair, Committee on Gulf War and Health: Health Effects of Serving in the Gulf War, Update 2009, Board on the Health of Selection Populations, Institute of Medicine, The National Academies Good morning Mr. Chairman and Members of the Subcommittee. My thanks to Congressman Mitchell and Members of the Subcommittee on Oversight and Investigations, House Committee on Veterans' Affairs for your concern regarding Gulf War veterans' health. My name is Stephen Hauser. Since 1992, I have served as professor and chair of the Department of Neurology at the University of California, San Francisco. I am trained in internal medicine, neurology, and immunology. I am also an elected member of the Institute of Medicine. I am here today because I served as Chair of the Committee that worked on the Institute of Medicine (IOM) report Gulf War and Health: Update of Health Effects of Serving in the Gulf War. The sponsor of the study was the Department of Veterans Affairs (VA). The report was released to the VA and Congress on April 8th of this year. I will focus on three main topics in my testimony. First, I will briefly discuss the overall IOM study process followed by the Committee in developing our report and the Committee's approach to its charge, including the process the Committee used to draw its conclusions regarding the association between deployment to the Gulf War and specific health outcomes. Second, I will summarize our specific findings and conclusions. And finally, I present the Committee's recommendations for future research to help address the continuing health concerns of Gulf War veterans. The IOM is a part of The National Academies, a private, non- governmental organization that provides independent scientific-based advice to policymakers and the public. Among the IOM's signature products is the consensus report produced by expert individuals from universities, nonprofit organizations, and other types of organizations. The long established study process, followed throughout the Academies, ensures that Committee Members are balanced for any biases and free from actual or potential conflicts of interest. Additionally, during Committee meetings and deliberations, there is no sponsor oversight; the sponsoring organization does not participate in any portion of the preparation and review of the IOM report. In instances when the Committee requests information from the sponsor, those materials are made publicly available. After the Committee develops a draft consensus report based on a detailed review of available literature, hearing from additional experts, and internal deliberation, the draft report undergoes a formal external peer-review process. The reviewers are anonymous to the Committee and IOM staff. They are asked to read the report and provide comments on whether the Committee has addressed its charge, the strength of the evidence for and the validity of the Committee's conclusions, and clarity and flow of the report. All reviewer comments must be addressed by the Committee and the report must be approved by The National Academies Report Review Committee before it can be released to the study sponsor and the public. The current report is an update of the 2006 report Gulf War and Health, Volume 4: Health Effects of Serving in the Gulf War. It examines the relevant literature published since 2005, the time of the last literature search for the 2006 report, on the health of veterans related to deployment to the Persian Gulf in 1990-1991. As requested by the VA, the specific charge to our update Committee was to review, evaluate, and summarize the literature on the following health outcomes that were noted in the 2006 report as having high incidence or prevalence in the Gulf War deployed veterans: cancer (particularly brain and testicular cancer), amyotrophic lateral sclerosis (ALS) and other neurologic diseases (such as Parkinson's disease and multiple sclerosis), birth defects and other adverse pregnancy outcomes, and post-deployment psychiatric conditions. In addition, and as recommended by the 2006 report, the Committee also reviewed studies on cause- specific mortality in Gulf War veterans. The Committee initially examined over 1,000 potentially relevant references from peer-reviewed publications for the Update report. After an assessment of the titles and abstracts, 400 of these references were considered particularly relevant and thus reviewed in depth by the Committee. In addition, to ensure a comprehensive approach, all the epidemiologic studies included in Volume 4 were also reviewed by this Committee in order to draw conclusions about the strength of association between deployment to the Gulf War and particular health outcomes. The Committee held two public sessions where interested parties, such as representatives from veteran-service organizations and Gulf War veterans, were invited to speak. As requested by VA Secretary Shinseki, the Committee also invited representatives from the VA Research Advisory Committee of Gulf War Veterans' Illness (RAC) to present the findings and conclusions from their report, Gulf War Illness and the Health of Gulf War Veterans: Scientific Findings and Recommendations, which was published in November 2008. In order to draw conclusions on the strength of the evidence for an association between deployment to the Gulf War and a health outcome, the Committee used categories of association. The following five categories are long established and have been used by previous Committees on Gulf War and Health and other IOM Committees evaluating topics such as vaccine safety and Agent Orange. They are widely accepted by and familiar to Congress, the VA, and veteran groups. The categories are: Sufficient evidence of a causal relationship, that is, the evidence is sufficient to conclude that between being deployed to the Gulf War causes a health outcome. Sufficient evidence of an association; that is, a positive association has been observed between deployment to the Gulf War and a health outcome in humans. Limited/suggestive evidence of an association; that is, some evidence of an association between deployment to the Gulf War and a health outcome in humans exists. Inadequate/insufficient evidence to determine whether an association exists; that is, available studies are of insufficient quality, validity, consistency or statistical power to permit a conclusion regarding the presence or absence of an association. And finally, limited/suggestive evidence of no association; that is, several adequate studies are consistent in not showing an association between deployment and a health outcome. In order to reach consensus and determine the category of association assigned for each health outcome, the Committee took a weight-of-the-evidence approach based on the studies and their classification as primary or secondary. Listed below is a summary of the Committee's findings. Sufficient evidence was found to conclude that a casual relationship exists between being deployed to the Gulf War and posttraumatic stress disorder (PTSD)--the only outcome placed in this category. Also of note, sufficient evidence suggests an association exists between deployment to the Gulf War and the following health outcomes: other psychiatric disorders, including generalized anxiety disorder, depression, and substance abuse, particularly alcohol. These psychiatric outcomes can persist for at least 10 years post deployment. Sufficient evidence of an association was also seen for gastrointestinal (GI) symptoms that are consistent with functional GI disorders such as irritable bowel syndrome and functional dyspepsia; for multi-symptom illness; and for chronic fatigue syndrome. __________ Summary of Findings Regarding Associations Between Deployment to the Gulf War and Specific Health Outcomes Sufficient Evidence of a Causal Relationship PTSD. Sufficient Evidence of an Association Other psychiatric disorders, including generalized anxiety disorder, depression, and substance abuse, particularly alcohol abuse. These psychiatric disorders persist for at least 10 years after deployment. Gastrointestinal symptoms consistent with functional gastrointestinal disorders such as irritable bowel syndrome and functional dyspepsia. Multisymptom illness. Chronic fatigue syndrome. Limited/Suggestive Evidence of an Association ALS. Fibromyalgia and chronic widespread pain. Self-reported sexual difficulties. Mortality from external causes, primarily motor-vehicle accidents, in the early years after deployment. Inadequate/Insufficient Evidence to Determine Whether an Association Exists Any cancer. Diseases of the blood and blood-forming organs. Endocrine, nutritional, and metabolic diseases. Neurocognitive and neurobehavioral performance. Multiple sclerosis. Other neurologic outcomes, such as Parkinson's disease, dementia, and Alzheimer's disease. Incidence of cardiovascular diseases. Respiratory diseases. Structural gastrointestinal diseases. Skin diseases. Musculoskeletal system diseases. Specific conditions of the genitourinary system. Specific birth defects. Adverse pregnancy outcomes such as miscarriage, stillbirth, preterm birth, and low birth weight. Fertility problems. Limited/Suggestive Evidence of No Association Peripheral neuropathy. Mortality from cardiovascular disease in the first 10 years after the war. Decreased lung function in the first 10 years after the war. Hospitalization for genitourinary diseases. I would like to elaborate a bit more on how the Committee evaluated ``multi-symptom illness,'' also referred to as Gulf War Illness or Gulf War syndrome. Numerous studies have documented that those deployed to the Gulf War have an increased prevalence of a disabling complex of self-reported symptoms such as fatigue, musculoskeletal pain, sleep disturbances, cognitive dysfunction, and moodiness, among others. The Volume 4 Committee looked at this symptom reporting by deployed Gulf War veterans and attempted to determine whether a unique illness could be defined by these symptoms but our Committee accepted that multi- symptom illness was indeed a diagnostic entity and examined the literature to make conclusions regarding its association with deployment to the Gulf War. We did not attempt to determine if the multisymptom illness seen in Gulf War veterans was a disease unique to them. Research has identified an association between self-reported multi- symptom illness and self-reported exposures to several chemicals that inhibit cholinesterase, an enzyme that is important for proper functioning of the nervous system. Pyridostigmine bromide (PB) is one example of a cholinesterase inhibitor as are many pesticides. In the appendix to our report, the Committee described how Gulf War veterans may have been exposed to cholinesterase inhibitors, including evidence potentially linking these exposures to multi-symptom illness. After careful examination of both animal studies and human studies, the Committee concluded that there was insufficient evidence to link possible exposures to cholinesterase-inhibiting chemical agents to the multi-symptom illness seen in Gulf War veterans. The Committee believes the path forward for Gulf War veterans consists of two branches, and has made recommendations accordingly. First, as with numerous other Gulf War and Health reports, the Committee calls for improved studies of Gulf War veterans that are designed and conducted to more accurately characterize deployment and potential related adverse environmental influences, and that address possible confounding factors, such as smoking. However, the Committee feels that further studies based solely on self-reports may not contribute to the scientific evidence or accurately reconstruct exposures that occurred 20 years ago in the Persian Gulf. The Committee recognizes that establishing Gulf War veterans' physical and mental health baseline status is a challenge. Robust cohorts need to be followed to track the development of ALS, MS, brain cancer, psychiatric conditions, and other health problems, such as cancers, cardiovascular disease, and neurodegenerative diseases that manifest later in life. Some large, well-characterized cohorts have already been established, such as the US cohort studied by the VA, the two UK cohorts, and the Australian cohort. In the future, these cohorts might provide information on diseases with low prevalence, such as ALS and brain cancer. The Committee also recommends a second major branch of inquiry regarding the effort to further define the diagnosis of and develop effective treatments for multisymptom illness. As our understanding of genetics, molecular science, and brain imaging expands, it should be possible to carry out large-scale, well-designed studies to identify the differences in veterans with persistent medical symptoms as compared to their healthy deployed counterparts. These differences include genetic variants; molecular profiles of gene expression; markers such as changes in DNA structure as a result of exposures to chemicals or viruses; immune system activation; and changes in the brain. The committee believes that useful biomarkers may be indentified to help diagnose and treat unexplained symptoms such as chronic fatigue, muscle and joint pain, sleep disturbance, difficulty in concentration, and depression. Finally, the Committee believes it would be valuable to undertake high quality clinical trials that may result in identifying effective, evidence-based treatments for multisymptom illness. In short, with the progress in scientific capabilities, well organized efforts to accurately diagnosis and clinically treat multisymptom illness and other unexplained illnesses would be most valuable to help our suffering veterans. On behalf of the Committee on Gulf War and Health: Health Effects of Serving in the Gulf War, Update 2009, I thank you for your trust in our ability to assist with you with your important work on veterans' health and for asking me to testify before this subcommittee. I look forward to answering any questions you may have. Prepared Statement of James H. Binns, Chairman, Research Advisory Committee on Gulf War Veterans' Illnesses Chairman Mitchell, Ranking Member Roe, Members of the Committee, I am honored to address you again as Chairman of the Research Advisory Committee on Gulf War Veterans Illnesses. The Committee was created by Congress in 1998 to provide advice to the Secretary of Veterans Affairs on the conduct of Federal Gulf War health research. Its membership includes the most experienced researchers in this field, some of the most respected neuroscientists in the country (including the head of the CDC neurotoxicology research laboratory and a former president of the American Academy for the Advancement of Science), and several Gulf War veterans. I thank you for holding this third hearing in your series on Gulf War Illness. There has been a dramatic change in the recognition of this problem in the year since the last hearing, and much of it can be attributed to your spotlighting attention on it. Great credit must also be given to two other people who will address you today. As VA Chief of Staff, Mr. John Gingrich has personally led a Task Force to re-examine VA Gulf War policy from top to bottom, bringing to this effort the urgency and concern for his troops he demonstrated as a battalion commander during the war. You will not hear him say, as the VA representative testified at your first hearing, that ``Gulf War veterans are suffering from a wide variety of common and recognized illnesses.'' Dr. Stephen Hauser has chaired a courageous new Institute of Medicine Committee which refused to limit its review to the narrow assignment given by VA staff and which has forcefully recognized this problem. Unlike what you heard at your second hearing, the Research Advisory Committee and the IOM are now in agreement on major scientific conclusions: that chronic multisymptom illness is a diagnostic entity; that it is associated with service during the Gulf War, affecting as many as 250,000 veterans; that it cannot be ascribed to stress or other psychiatric disorders; that it is likely the result of genetic and environmental factors; and that a major national research program is urgently needed to identify treatments. The IOM Committee did not feel the data were strong enough to identify specific environmental causes, while our Committee did, but that is a relatively minor difference. The question before us this morning is what the government will do, now that the problem has been recognized. The Task Force is a major initiative to reform VA system-wide, and VA leadership's decision to open its draft report to public comment was wise. There is much in the report that is good, but there is also much that reflects old attitudes the report is supposed to change. The test will come in the final draft of the report and how its recommendations are implemented. I will focus my comments on research. Now that there is a scientific consensus that Gulf War Illness is real, important, and solvable, we have arrived where we should have been in 1995. The task remains to mount an effective national research program--``a well- planned, top-down program, employing the best in American science, run by people who go to bed at night and wake up in the morning thinking about this problem,'' as Dr. Houser described to me what his IOM Committee felt was necessary. This country is not doing that. At VA, there are some individual researchers doing excellent work, and VA is in the process of launching a new program to replace the one cancelled at the University of Texas, Southwestern, and hiring a toxicologist to staff it. They have issued requests for proposals that include most topics recommended by the Research Advisory Committee's 2008 report. They have appointed a steering committee of outside scientists to guide this program, including several from the Research Advisory Committee. There is a plan being developed for a major genetics component. It all sounds very positive. However, the new RFA's have failed to attract much interest from the VA research community, which is not surprising after nineteen years of denial regarding this problem. There is no comprehensive research plan. The places that VA has found to invest most of the funds committed this year are not for priority research topics. Research involving the psychological aspects of chronic illness is again being favored. The new steering committee was not consulted on several new research studies announced last week. The press release announcing the studies carried the stale old message that Gulf War veterans' problems are mainly psychological. I am confident that this message was not approved by the Secretary's office, but regardless of their intentions, VA's new research program resembles far too much VA's old research program. To mount an effective program, the Office of Research and Development must engage its new steering committee to create a comprehensive plan, focused on priority research topics, under the leadership of a scientist who understands the problem, who harbors no doubts as to its nature, and who goes to bed at night and wakes up in the morning thinking about how to solve it. Marginal improvement is not enough. The program must be built for success. Or the successors of everyone in this room will be having this same conversation twenty years from now and wondering why we didn't act. Assuming that VA makes these major necessary changes, it cannot do the job alone. Yet the Department of Defense, which historically has funded two-thirds of Gulf War Illness research, has eliminated this research entirely from its budget for many years. This action is tragically shortsighted, given the major implications of this research to current and future military personnel at risk of multisymptom illness and toxic exposures. Congress has responded by establishing a Gulf War Illness research program within the DoD Congressionally Directed Medical Research Program (CDMRP). This well-managed program is open to all researchers. However, it is grossly underfunded, having received just $8 million in FY2010. Congressional supporters have proposed $25 million for this program in FY2011, and I support that request, as necessary to the scope and importance of the problem. Compare these figures to the billions of dollars recently calculated to cover the care and disability of Vietnam veterans exposed to Agent Orange. How much better for ill Gulf War veterans, current and future U.S. military personnel, and the public treasury, to cure this illness rather than to allow veterans' health to deteriorate. I urge you to make this bipartisan issue a priority and to press upon your colleagues the vital importance of adequate funding for Gulf War Illness research at CDMRP. I also encourage you to support Gulf War Illness reform at VA. As last week's press release and the undesirable parts of the draft Task Force report make clear, there is still push-back within the bureaucracy to the initiatives Secretary Shinseki and Chief of Staff Gingrich have begun. The bureaucrats believe that they will remain while appointed leaders come and go. I urge you to consider legislation to ensure the permanence of reforms. I urge you to hold annual follow- up hearings to keep the spotlight on. Finally, I urge you to reaffirm the purpose of the Research Advisory Committee to provide independent advice to the Secretary on the conduct of Gulf War research, as intended by Congress. Recently VA staff have attempted to change the charter of the Committee to make us dependent on VA staff--in the name of standardization. In other words, the people whose work we review would staff our meetings, our reports, and our recommendations. I am sure this is not what Congress had in mind when it directed our Committee to review Federal Gulf War research. It is important to close on a positive note. Twenty years into this battle, the objective is finally in sight. It is time for leaders and resources adequate to accomplish the mission. It is within reach. It is a matter of choice. Prepared Statement of John R. Gingrich, Chief of Staff, U.S. Department of Veterans Affairs Chairman Mitchell, Ranking Member Roe, and Members of the Subcommittee, thank you for holding today's hearing. I am John Gingrich, Chief of Staff for the Department of Veterans Affairs (VA), and Chairman of the Gulf War Veterans' Illnesses Task Force (GWVI-TF, or ``Task Force''). Joining me today are Dr. Victoria Cassano, Director, Radiation and Physical Exposures Service, and Acting Director, Environmental Agents Service, Office of Public Health and Environmental Hazards, Veterans Health Administration (VHA); Dr. Joel Kupersmith, Chief Research and Development Officer, Office of Research and Development, VHA; and Bradley Mayes, Director, Compensation & Pension Service, Veterans Benefits Administration (VBA). Dr. Cassano, Dr. Kupersmith, and Mr. Mayes also serve as members of the Task Force. I am pleased to come before you today to provide an overview of the Task Force mission, accomplishments, and recommendations contained in its report. The Task Force represents a bold step forward in how VA considers and addresses the challenges facing not just veterans of a specific era, but the challenges facing all veterans. Our ability to address the challenges facing 1990-1991 Gulf War veterans is not applicable just to that cohort of veterans, it is representative of VA's commitment to all our veterans. We welcome the opportunity to work with the Congress, Veterans' Service Organizations (VSOs), and all stakeholders in applying the lessons we have learned in caring for Gulf War veterans across the spectrum of care and benefits for all veterans. Task Force Mission, Efforts, and Approach The Task Force was formed in August 2009 to provide a unified and cohesive organizational instrument to address the concerns and needs of Gulf War veterans, especially those who suffer from unexplained chronic multisymptom, or undiagnosed illnesses. From the outset, VA recognized that this was a complex issue with many people deeply invested in its resolution. We recognized the frustrations that many veterans and their families experience on a daily basis as they look for answers, and seek benefits and health care. In order to meet these challenges, the Task Force was designed as a matrix organization within VA that meets regularly to investigate allegations and perceptions, analyze facts and data, coordinate and review findings and proposals, and collaboratively develop recommendations. The Task Force includes staff from the Office of the Secretary (OSVA), VHA, VBA, Office of Public and Intergovernmental Affairs (OPIA), Office of Policy and Planning (OPP), and the Office of Congressional and Legislative Affairs (OCLA). The staff from these offices represented a broad spectrum of subject matter expertise and stakeholder perspectives necessary to ensure success. Members were charged with defining the key areas of review, consulting key experts and relevant stakeholders, and capturing the issues, data, programmatic and performance information necessary to inform their recommendations. From the outset, I expected Task Force members to be candid and thorough during the review process. In order to meet the Task Force goals, and develop results-oriented proposals, members were asked to be aggressive and innovative. They met those expectations. Although the report the Task Force produced is but the first of many steps in a dynamic and still unfolding plan to address the needs of Gulf War veterans, I am confident that we are moving in the right direction. The Task Force was charged with conducting a comprehensive review of all VA programs and services that serve the Gulf War cohort of veterans. The Task Force was further charged to identify gaps in services as well as opportunities to better serve this veteran cohort, and then develop results-oriented recommendations to decisively advance VA's efforts to address their needs. The Task Force considered a successful mission outcome as a coherent, comprehensive and facts-based action plan, which considers and integrates appropriate viewpoints from stakeholders and subject matter experts. The Task Force focused its efforts on veterans of the conflict in 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. The Gulf War is legally defined as beginning on August 2, 1990, and extending through a date to be prescribed by Presidential proclamation or law. The term ``Gulf War Veterans'' could refer to all veterans of conflicts in Southwest Asia during this period, including Veterans of Operation Iraqi Freedom, and subsequent conflicts in this theater. We considered these possibilities when developing our recommendations, in the hopes that this report would serve as a foundation for treating the unique wounds of war of the present conflicts. We were also mindful that this cohort of veterans includes significant percentages of women and minority veterans; and so we worked diligently to ensure that we addressed their needs. The Task Force report reflects an unprecedented VA approach to problem solving. The approach uses an interdisciplinary team of subject matter experts from across multiple horizontal domains of VA, to include direct senior leader participation. The GWVI-TF worked over several months to develop a comprehensive plan of action consistent with the challenge inherent in Secretary Shinseki's pledge to all veterans in his comments before the National Society of the Sons of the American Revolution on 9 January 2010: ``At VA, we advocate for veterans--it is our overarching philosophy and, in time, it will become our culture.'' Task Force Objectives The report's action plans form an initial roadmap to transform the care and services we deliver to the Gulf War cohort. Execution of these plans will deliver the critical tools for frontline staff to address issues raised by VA and Gulf War veterans, Veteran Service Organizations, Congress, and other external stakeholders. Due to significant limitations in VA's Gulf War Veterans Information System (GWVIS) and the reports generated from the various data sources used by GWVIS, it is extremely difficult to accurately portray the experiences of the 1990-1991 Gulf War cohort and their respective disability claims or health care issues. That said, this shortfall did not prevent the GWVI-TF from identifying gaps in services as well as opportunities to better serve this veteran cohort. The Task Force developed action plans to deliver new and improved tools for VA personnel based on seven core themes: Partnerships: Partner with the Department of Defense (DoD) to improve communication and subsequently the care and services VA delivers to veterans; Benefits: Reassess and revise benefit policies as needed and empower and train VA compensation personnel to better secure the benefits veteran clients have earned; Clinician Education and Training: Empower clinical staff to better serve veteran needs through a new model of interdisciplinary health education and training; Ongoing Scientific Reviews: Ensure long-term population- based surveillance efforts for improved care for veterans; Medical Surveillance: Transition from reactive to proactive medical surveillance to identify and better manage possible adverse health outcomes of veterans' potential hazardous exposures; Research and Development: Strengthen the foundation today for tomorrow's more comprehensive short and long-term program for research and development; and Outreach: Enhance outreach to reconnect veterans to VA care, services, information and databases. These action plans are not meant to be the definitive panacea for caring for Gulf War veterans. While a starting point, this veteran- centric care will require continued efforts and vigilance on the part of all stakeholders. Implementing the recommendations in this report will provide VA staff with the means to continue to advocate and care for all Gulf War veterans. Task Force Recommendations The Task Force report is organized around the seven themes, previously mentioned. These themes drive action plans for the way ahead. Partnerships: Veteran care is profoundly influenced by how well DoD and VA share information and resources in the areas of deployment health surveillance, assessment, follow-up care, health risk communication, and research and development. VA is dependent on DoD to identify environmental hazards and Servicemembers who were possibly exposed to those hazards. VA and DoD already collaborate through the Deployment Health Working Group (DHWG). The report proposes to leverage the DHWG as the principal mechanism for VA to receive data on environmental exposures of Servicemembers, but this proposal has not been coordinated yet with the DHWG. Additionally, the report proposes using the DHWG to provide regular progress reports on data sharing efforts to the VA/DoD Health Executive Council. As of July 1, 2010, a draft Data Transfer Agreement is being reviewed by DoD and VA. Benefits: The Task Force received input from veterans and veterans' stakeholders concerning the benefits and services targeted to Gulf War veterans. Specifically, there was concern 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. As a result, the Task Force reviewed the current legislative and regulatory provisions unique to the Gulf War cohort of veterans. Rule- making is also underway to establish the presumption of service connection for nine infectious diseases identified in the National Academy of Sciences' report titled ``Gulf War and Health Volume 5: Infectious Diseases'' issued on October 16, 2006. To further assist Gulf War veterans, VBA Compensation and Pension (C&P) Service published two training letters designed to inform and instruct regional office personnel on proper 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 multisymptom illness'' used in the legislation, and notes that VA plans to amend its regulations to clarify that the three currently listed medically unexplained, chronic, multisymptom illnesses, chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome, are only examples of chronic unexplained multisymptom illnesses and not an exhaustive list of conditions subject to the presumption of service connection. 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 title 38 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 are better able to evaluate a Gulf War veteran's disability pattern. Additional assistance was provided in Training Letter 10-03, titled Environmental Hazards in Iraq, Afghanistan, and Other Military Installations, which was coordinated with the Veterans Health Administration and DoD. This training letter provides regional office personnel with information on environmental hazards associated with Gulf War and Southwest Asia service. It discusses 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. The training letter was sent to VBA's regional offices on April 26, 2010. In addition to Southwest Asia environmental hazards, the training letter provided details of the contaminated drinking water situation at Camp Lejeune, North Carolina, from the 1950s to the 1980s. The purpose of this information is to alert regional office personnel to the potential for disability claims based on exposure to any of these environmental hazards. The training letter outlines development and rating procedures for such claims and provides ``fact sheets'' for VA medical examiners that explain each hazard. We will continue to coordinate with DoD to ensure that VA claims processing personnel remain informed about future environmental hazard exposures as additional information becomes available. Clinician Education and Training: VHA has historically used a series of clinician training programs, titled Veterans Health Initiative (VHI), to prepare clinician staff to treat veterans. However, the current programs are unwieldy, information is out-of-date, the format is not user-friendly, and the process for updating these training programs lacks agility. In order to address this training deficit, an interdisciplinary team of VA subject matter experts met on December 8 and 9, 2009, to rewrite and reorganize the Gulf War veterans' Illnesses training program. This was the first time that such a wide array of policy makers, subject matter experts, and clinicians in the field were brought together to review every facet of a training program. A conference call on December 28, 2009, was held to continue editing the content. A two-day offsite meeting on February 1 and 2, 2010, finalized the content. The training program is now ready for review by the peer review board. The target date for on-line availability is October 31, 2010. And while primary care providers currently do an excellent job of providing patients with work-ups based on symptoms, they do not always have the necessary tools to provide thorough exposure assessments. An initial seminar was developed in August 2009 in conjunction with Mount Sinai Medical Center and the New Jersey War Related Illness and Injury Study Center (WRIISC) to overcome this deficiency. Lessons learned from prior conflicts, including the 1990-1991 Gulf War, were coupled with the lessons learned at the August 2009 seminar to build more comprehensive training for VA staff. This past month, VHA conducted two exportable workshops in exposure evaluation and assessment to update VA clinicians on the unique exposure concerns of returning OEF/OIF veterans, and to provide educational and clinical tools for evaluation of exposure risk and the health outcomes relevant to these risks. Additional seminars are being planned for fiscal year (FY) 2011. In addition, later this year, a segment of this workshop seminar will be offered as a satellite broadcast available to all VA providers. Recent training provided to VBA field stations included guidance for VA medical professionals who conduct compensation and pension examinations for conditions associated with Gulf War-related exposures. VA's War Related Illness and Injury Study Center (WRIISC) program is fully operational with facilities located in Washington, DC, East Orange, NJ and Palo Alto, CA. The WRIISCs, staffed by teams of multidisciplinary clinicians uniquely qualified to evaluate veterans with deployment-related health concerns, provide a clinical ``second opinion'' resource to veterans via a referral process based on geographic location. Ongoing Scientific Reviews: VA recognizes the need to leverage additional resources available to us and our partners to provide the kind of attention to Gulf War veterans that they deserve. We will continue to support the long-term Institute of Medicine (IOM) scientific reviews of health outcomes related to veterans' service in Gulf War combat theaters. VA is collaborating with the Centers for Disease Control and Prevention (CDC) to incorporate de- identified veteran-specific data collection and analyses into three major longitudinal health-related national surveys: National Health and Nutrition Examination Survey (NHANES); National Health Interview Survey (NHIS); and National Immunization Survey (NIS). VA staff has had several discussions with investigators on the NHANES and NHIS. Staffs from both surveys have expressed willingness to include veteran- specific questions and to plan for oversampling of the veteran population to ensure an adequate number of veterans to allow for comparisons to the adult U.S. population. As of July 1, 2010, VA has submitted to NHANES and NHIS staff specific questions that, when answered, will identify veteran study subjects beginning in 2011 in both these National surveys. This effort will enable contrasts to be made between current disability and health status of veterans and non-veterans. Additionally, these questions will enable VA to assess the health of veterans during multiple periods and eras of service. To prepare for and address future needs, in June 2009, we announced the National Health Study for a New Generation of U.S. Veterans to study the health status of 60,000 veterans who have separated from active duty, Guard, or Reserves, half of whom served in either Iraq or Afghanistan and half who did not. Women veterans are being oversampled to permit appropriate comparisons. Medical Surveillance: DoD has discussed with VA events or situations when Servicemembers may have been exposed to hazardous substances during the current conflicts in Iraq and Afghanistan. These possible exposure events include exposure to hexavalent chromium, burn pit smoke, and other contaminants. Unfortunately, medical surveillance has not been extensive for 1990-1991 GW veterans, despite the efforts of DoD's Comprehensive Clinical Evaluation Program, which was not focused on exposure related disease. One of the lessons learned from the first Gulf War is that VA must get information regarding potentially exposed troops as soon as available from DoD, in order to provide ongoing medical surveillance of veterans who may be at risk of adverse health outcomes. A program is being developed for those veterans who may have been exposed to sodium dichromate while performing duties at Qarmat Ali, Iraq. This model will be used to develop medical surveillance programs for the other exposure events. The event at Qarmat Ali is the most well-defined event in that there is a relatively small number of potentially exposed veterans, there is only one offending chemical, and the exposure has ceased. Among Gulf War veterans, there are known instances where Servicemembers were hit by coalition fire and are believed to still have depleted uranium (DU) fragments present in their bodies. The need to monitor the effects of long-term DU exposure still exists. The Depleted Uranium follow-up program was started in 1993 at the Baltimore VA Medical Center (VAMC). This program periodically re-evaluates Servicemembers who have known embedded DU fragments. In 2008 the Toxic Embedded Fragment Study Center was established to clinically evaluate all Servicemembers with any type of embedded fragment. These programs have been supported by the Division of Biophysical Toxicology at the Armed Forces Institute of Pathology (AFIP). The Joint Pathology Center (JPC), authorized in NDAA 2008, will serve as the new Pathology Reference Center for the Federal Government providing pathology consultation, education, research, and oversight of the vast Tissue Repository housed at AFIP, which will close in 2011. VA will continue to support the work of the JPC to maintain these vital programs for Veterans with Toxic Embedded Fragments of all kinds. Research and Development: There has been significant Federal support for research on Gulf War veterans' illnesses that has answered many epidemiological questions and studied a number of potential biological indicators of illness in Gulf War veterans. Effective treatments and objective diagnostic tests, however, have not yet been identified. We know that this is of particular frustration to veterans and their families. The most recent IOM Report, Gulf War and Health: Volume 8, concluded that while PTSD was causally linked to traumatic war experiences associated with GW deployment, the excess of unexplained medical symptoms reported by GW veterans cannot be reliably ascribed to any known psychiatric disorder. Although the precise cause for these symptoms remains unknown, the fact that some GW veterans are ill and suffer adverse effects on their daily lives remains unquestioned. VA agrees with the recommendation of the VA Research Advisory Committee on Gulf War Veterans' Illnesses in its 2008 report that a renewed Federal research commitment is needed to identify effective treatments for Gulf War Illnesses and address other priority Gulf War health issues. VA remains committed to conducting research to identify new treatments for ill GW veterans. Clinical trials have examined new therapies for sleep disturbances and gastrointestinal problems, and tested the feasibility of performing cognitive behavioral therapy via telephone. Additionally, VA researchers are conducting clinical trials funded through the Congressionally Directed Medical Research Program managed by DoD in hopes of finding new treatments for GW veterans. VA's Office of Research and Development (ORD) issued three new Requests for Applications (RFAs) on November 10, 2009, which incorporated more than 80 percent of the research recommendations the Research Advisory Committee on Gulf War Veterans' Illnesses made in their 2008 report. Three of the 13 applications received, focused on testing or developing new treatments for ill Gulf War veterans, have been selected for funding. These RFAs will be re-issued twice a year to regularly request submission of new proposals and revisions of previously reviewed, but not funded, applications. The results of VA's short term plans to move forward are encouraging that the goal of identifying effective treatments will be met. Previous VA-funded clinical trials have examined new therapies for sleep disturbances, cognition, pain, fatigue and gastrointestinal problems, and tested the feasibility of performing cognitive behavioral therapy via telephone. Another major focus of VA's current research portfolio is to identify biomarkers, or biological indicators, that can distinguish ill Gulf War veterans from their healthier counterparts. In addition, ORD's long-term plans include the design of a new study of a National cohort of Gulf War veterans under the auspices of VA's Cooperative Studies Program, which has extensive experience in developing multi-site VA clinical trials and clinical studies. The design of this new study will include a Genome Wide Association Study (GWAS) and other elements, based on evaluation of the existing body of scientific/clinical knowledge about the illnesses affecting Gulf War veterans. Let me also take this opportunity to say clearly that our decision to not exercise the two option years of the contract with the University of Texas Southwestern Medical Center (UTSW) was because of our commitment to ensuring that Gulf War veterans receive only the best care. Our decision was based on persistent noncompliance with contract terms and conditions, and numerous performance deficiencies documented by the Contracting Officer, the Contracting Officer's Technical Representative, and the Office of the Inspector General. Unobligated funds from FY 2009, the third UTSW contract period, have been retained for use in FY 2010 and FY 2011 for modifications and close-out costs of previously approved contract task orders and for data transfer costs at the conclusion of the contract. VA will maintain funding levels for Gulf War research as close as possible to the $15 million per year recommended in the Senate Committee on Appropriations' report language which accompanied the FY 2010 Military Construction and Veterans Affairs and Related Agencies Appropriation Bill. Even with the unanticipated decision to stop accepting new task orders during the latter portion of FY 2009 and to not exercise the third option year (FY 2010) of the contract, VA exceeded the $15 million target for FY 2009 and is currently projecting $9.7 million for FY 2010. It is anticipated that additional VA research projects focused on the illnesses affecting Gulf War veterans will be identified for funding in FY 2010 and beyond as a result of the short- and long-term plans described above. Although we are aware that some of our stakeholders viewed our decision regarding the UTSW contract as a disservice to Gulf War veterans, let me say it again: We are committed to the best possible care for this cohort of veterans. Outreach: There is a general lack of engagement on, and knowledge of, the efforts VA is taking to address the issue of Gulf War veterans' illnesses. Additionally, VA has not been consistent in conducting targeted outreach, nor in building awareness about Gulf War Illnesses and research among the general public and professional communities. VA needs a more robust outreach plan which will ensure that there is a more inclusive approach when communicating to the Gulf War veteran community. In addition, VA should communicate Department-wide to its employees about the changes to the rating schedule and presumptions related to Gulf War veterans, and will execute an outreach program to interested scientists and clinicians in conducting Gulf War Illness research. As part of the renewed effort to acknowledge and engage Gulf War veterans, the GWVI-TF has formulated a proactive outreach strategy that combines consolidated strategic communication initiatives with educational resources to ensure that Gulf War veterans are informed of the benefits and services available to them. We will also be reaching out to you, our partners in Congress, to help us provide this information to your Gulf War veteran constituents. Partnering With Our Stakeholders VA reviewed and evaluated all the public comments related to the draft findings for subsequent inclusion into the final written report to the Secretary. This was an unprecedented step for VA to take for any task force report, but we believe this course of action was both necessary and beneficial to the process. The Task Force completed the draft written report on March 29, 2010. On April 1, 2010 VA released the written report for public comment. This was the first initiative in which VA provided two ways for veterans to submit feedback on policy proposals. The public was notified per a Federal Register notice and a simultaneous outreach campaign support by VSOs. The public could make comment two ways: via the Your Gulf War Voice Website, or a formal written submission directly to VA. The public comment period closed on May 3, 2010. The public response was one of the largest in VA's history to a proposed rule, regulation, or policy with over 150 suggestions submitted, 300 additional comments, and more than 2,100 votes were cast by 189 unique public respondents. Despite this outreach effort and the robust public response to the draft written report, VA did not reach as many veterans as it wanted to reach. Based on the public comments to the draft written report, many veterans believed the opportunity to comment on this report should have been be posted in all VA facilities at the point of service (i.e. waiting areas and vet centers). VA will publish subsequent findings and recommendations of the Task Force in a public forum for comment and review, and we will consider ways to post future Gulf War information in VA facilities. Conclusion In developing this report, VA made every effort to be transparent and aggressively advocate for veterans. We strived to hold ourselves accountable for our shortcomings, and build on our successes. VA's team views this report as a foundation upon which we can collectively build iterative future improvements in the care and services VA delivers by leveraging the lessons learned by this Task Force across the full spectrum of all veteran communities and their families. We are keenly aware that not every stakeholder will agree with everything in the report. We recognize that there is mistrust among some of our stakeholders, and there are many misperceptions. Regardless, VA encourages all stakeholders to avoid letting individual differences prevent further collaboration or progress for Gulf War veterans. We welcome your recommendations and criticisms in the hopes of forming a constructive dialogue that results in better services for our veterans. VA looks forward to partnering with all stakeholders in implementing the Task Force recommendations and devising new strategies with the members of the Task Force as they continue to refine the way ahead--always with the goal of serving our Gulf War veterans. Mr. Chairman, this concludes my testimony. I will be happy to respond to any questions from you and the other Members of this Subcommittee. Statement of Adrian Atizado, Assistant National Legislative Director, Disabled American Veterans Mr. Chairman and Members of the Subcommittee: Thank you for inviting the Disabled American Veterans (DAV) to testify at this important hearing to offer our views on the future of veterans suffering from Gulf War Illnesses (GWI). The DAV was asked to address the following issues in our testimony: the cultural perception of GWI; GWI research; Department of Veterans Affairs (VA) medical care and benefits for ill Gulf War veterans; education and outreach efforts to Gulf War veterans; and the VA's Gulf War Veterans' Illnesses Task Force report. CULTURAL PERCEPTION The DAV believes the American people honor and respect the courage and contributions of military members, especially those who have made the ultimate sacrifice of life or injury as a result of their service. Americans strongly support programs that address the needs of the men and women who become ill or injured as a consequence of military service. To meet those needs, sick and disabled veterans should be provided: high quality health care; adequate compensation for losses resulting from such service-connected disabilities; vocational rehabilitation and/or education to help disabled veterans prepare for, and obtain, gainful employment; enhanced opportunities for employment and preferential job placement so that the remaining abilities of disabled veterans can be adapted or used productively; and effective outreach to ensure all veterans are aware of, and receive the benefits they have earned. Despite the commitment of the American people and Congress, past history is replete with examples that the needs of sick and disabled veterans have gone wanting, with cynicism, denials, delays, and resistance. This is especially true when the wounds of war are not visible or well understood. Although one need only look to the latest conflicts in Iraq and Afghanistan, one can cite myriad examples from the World Wars, Korea, and Vietnam of an absence of beneficence. Veterans have faced consistent and strident challenges in gaining official recognition of the health consequences of occupational exposures that occurred as a result of military service to their country. This is especially true of Gulf War veterans and their illnesses. Articles continue to be published, including those funded by VA and the Department of Defense (DoD), that minimize, confuse, or conceal information that this Subcommittee has received in testimony at previous hearings. These articles claim that symptoms reported by ill Gulf War veterans are similar to those experienced by veterans of other eras. Yet scientific studies such as those conducted by Dr. Han Kang, the principal investigator for the ``Longitudinal Health Study of Gulf War Era Veterans,'' \1\ consistently show about 25 percent of Gulf War veterans suffered from multi-symptom illnesses compared to non-deployed era veterans. His study also found that Gulf veterans reported more functional impairments, more limitations on employment, and more health care utilization than their non-Gulf veteran peers. However, almost two decades after the Persian Gulf War began, still-unanswered questions abound about the pain, illnesses, and disabilities afflicting Gulf War veterans. We do not have a clear understanding of the risks, causes, treatments or long-term outcomes of illnesses suffered by Gulf War veterans. These issues require corrective action. --------------------------------------------------------------------------- \1\ Health of US Veterans of 1991 Gulf War: A Follow-Up Survey in 10 Years. Journal of Occupational and Environmental Medicine 2009 Apr; 51(4):401-410. --------------------------------------------------------------------------- In VA's rush to restore the health of our latest combat heroes of Operations Enduring and Iraqi Freedom (OEF/OIF), VA has not maintained a steadfast commitment and adequate efforts to explore the unanswered questions of older era veterans. We at DAV are committed to be the voice of ill and injured veterans of all eras. We believe that VA must retain a steady focus on, and a commitment to find answers to the health consequences of military service, especially the illnesses and injuries resulting from combat service, including those of the Persian Gulf War. Congress has many champions who have and continue to fight to better the lives of ill Gulf War veterans. Further, the DAV is encouraged by the current Secretary of Veterans Affairs, who has publicly committed to transform the VA culture to better serve veterans; however, it has been a challenge to point to a clear champion in this Administration, or a clear plan that will address all the well- known health concerns associated with our nation's ill Gulf War veterans. GULF WAR ILLNESS RESEARCH Each year since the dramatic decline in overall research funding for GWI in 2001, the DAV has urged Congress to increase funding for VA and DoD research on GWI. The DoD's Congressionally Directed Medical Research Program (CDMRP) has managed the Gulf War Illness Research Program (GWIRP) since fiscal year (FY) 2006. This program did not receive funding in FY 2007, but a $10 million appropriation renewed the GWIRP in FY 2008, and $8 million was appropriated for FY 2009 and 2010. This year, DAV again supports a recommendation to provide $25 million for the GWIRP in FY 2011. Mr. Chairman, the CDMRP has funded nine treatment studies, now underway, compared to three in the entire previous history of Federal GWI research. It focuses on small pilot studies of promising treatments already approved for other diseases and is open to all researchers on a competitive basis. The DAV urges the Members of this Subcommittee to support, and the full House Committee on Appropriations to meet the recommended funding level of the Senate for the Gulf War Illness Research Program. Diluting Gulf War Illness Research The DAV previously testified before this Subcommittee about our ongoing concern similar to those issues raised by the Research Advisory Committee on Gulf War Veterans' Illnesses (RACGWVI), a committee that is directed to evaluate the effectiveness of government research on GWI. The RACGWVI has questioned the nature of some VA-funded research as to whether these research projects will directly benefit veterans suffering from GWI by answering questions most relevant to their illnesses and injuries. Moreover, we are concerned about expanding the target population for GWI research to include veterans who served much more recently in OEF/OIF. Although ill Gulf War veterans and OEF/OIF veterans have similar concerns about their potential exposures to environmental hazards, and while it is true that we are maintaining a continuing military presence in Southwest Asia, DAV believes these are insufficient reasons to link research in these distinctly different populations. We believe research on OEF/OIF health concerns are co- equally important to that of GWI veterans, but rigorous scientific evidence, not assertions, should establish the basis that proves expanding the target population of these research efforts does not confound results or otherwise diminish the focus on improving the health status of ill Gulf War veterans. One of the lessons learned from the GWI experience is that attention to documentation of environmental and military occupational exposures is of utmost importance to our understanding of the health consequences of combat exposure. We dramatically reduce our ability to find effective casualty prevention measures as well as the chances of understanding the causes and linkage to illnesses of combat veterans when adequate attention is not devoted to monitoring exposures. The DoD made a commitment to correct its deficiencies in documenting and monitoring unit locations and potential exposures after the Persian Gulf War. However, evidence is growing that this promise has not been kept and that DoD has failed to do adequate exposure monitoring once again in the wars in Afghanistan and Iraq. Whether it is the magnitude of local blast impacts; screening after exposure to blasts; or air, water, and soil environmental monitoring, potential exposures have not been adequately measured. The DoD should be required to take immediate action to correct these deficiencies. MEDICAL CARE AND BENEFITS FOR ILL GULF WAR VETERANS Health Care Benefit Workload and Utilization In 1997, VA created the Gulf War Veterans Information System (GWVIS) reports to comply with Public Law 102-585, for the purpose of identifying Gulf War veterans and monitoring their benefit claims activity. Beginning in 2003 these reports included data from VHA \2\ to provide some semblance of tracking VA health care utilization. --------------------------------------------------------------------------- \2\ February 2003--Gulf War veteran mortality data; May 2003-- Cumulative numbers of inpatient and outpatient health care encounters for deployed Gulf War veterans; February 2005--Number of unique Gulf War veterans who sought care at Vet Centers; February 2005--Number of unique Gulf War veterans enrollment by Priority Group. --------------------------------------------------------------------------- As this Subcommittee is aware from a previous hearing, concerns regarding the integrity of benefit claims data in the GWVIS reports have been confirmed by VA, noting discrepancies in migrating records from the Department's legacy database to the new corporate database (VETSNET). In addition, VA indicated in its post-hearing response to the Subcommittee's question that a review of this migration and subsequent erroneous reporting was to be completed by the end of FY 2009. DAV has not been given the opportunity to be briefed by VA on this matter nor have we received the promised reports with accurate data that were to be published by the beginning of FY 2010. The DAV believes the new reporting will remain suspect until the Department provides full disclosure to Congress and the veterans service organization community on the specific business rules that caused the discrepancy in data migration, the limitations of the new reports, and how they differ from reports based on VA's Benefits Delivery Network (BDN). In addition to compensation and pension benefits, veterans may be eligible for education and training benefits, vocational rehabilitation and employment, home loans, dependents' and survivors' benefits, life insurance, and burial benefits. Unfortunately, information regarding utilization of these benefits by Gulf War veterans is unavailable even on GWVIS reports. We also note there was a limited run of reporting from May 2003 until August 2006 of crude but potentially worthwhile data on VA inpatient stays and outpatient visits of Gulf War veterans. DAV believes VA is capable of producing a more meaningful report on health care utilization of GWI veterans. Notably, VA's Office of Public Health and Environmental Hazards issues the ``Analysis of VA Health Care Utilization Among US Global War on Terrorism (GWOT) Veterans.'' This report provides a fairly detailed description of the trends in health care utilization and workload of OEF/OIF veterans, diagnostic data, and their geographic location with respect to the VA health care system. We believe such information should also be gathered on Gulf War veterans to allow VA to tailor its health care and disability programs to meet the needs of this veteran population. Such information should include updated workload and utilization of VA's Vet Centers as well as its War Related Illness and Injury Study Centers (WRIISCs). The GWVIS reports are the only public reports available regarding the VA health and benefits activity of Gulf War veterans. Due to the lack of data integrity and granularity, the GWVIS quarterly report should be made more comprehensive, since many unanswered questions remain that can better describe whether VA benefits are meeting the needs of ill Gulf War veterans and whether such veterans are receiving the VA benefits they have earned and deserve. Compensation and Pension Benefits Expiration of Presumptive Period Public Law 103-446 was enacted in 1994, and serves as hallmark legislation to ensure Gulf War veterans suffering from unexplained chronic conditions receive just compensation. However, faced with what appears to be a dismal record of adjudicating claims based on presumptive service connection for GWI without proper analysis by VA, and considering that other conditions should be included in the list of conditions to be presumptively service-connected due to military service in the Persian Gulf War, the delegates to our most recent National Convention passed DAV Resolution No. 010, urging the passage of legislation to extend indefinitely the presumptive period for service connection for ill-defined and undiagnosed illnesses. We urge this Subcommittee to ensure this period that, under current law, ends on December 31, 2011, does not expire. Delivering All the Benefits Entitled Through our corps of highly trained professional National Service Officers, who assist veterans and their families in filing claims for VA disability compensation, rehabilitation and education programs, pensions, death benefits, employment and training programs, and many other programs, the DAV has witnessed first-hand how ill Gulf War veterans are denied benefits they have earned and deserve. DAV applauds the Veterans Benefits Administration's (VBA's) issuance of Training Letter 10-01 dated February 4, 2010, to clarify VBA's past erroneous interpretations of Section 202 of Public Law 107- 103. This Act established presumptive service connection for GWI veterans based on an array of disabling signs and symptoms. The letter also affirms past VA variability in applying 38 CFR Sec. 3.317 yielding decisions adverse to GWI veterans. In the Training Letter, VBA personnel were instructed to recognize that chronic disabilities claimed by ill Gulf War veterans, fall under two categories: undiagnosed illnesses and ``diagnosed medically unexplained chronic multi-symptom illnesses.'' Medical personnel in general and physicians in particular are trained to produce a diagnosis as a basis for treatment. However, such a diagnosis is not grounds for denying the claim, since medically unexplained chronic multi-symptom illnesses are diagnosable. According to VBA, regulations will be proposed to amend Sec. 3.317 to clarify that chronic fatigue syndrome, irritable bowel syndrome, and fibromyalgia are not the only disability patterns that can be considered diagnosable medically unexplained chronic multi-symptom illnesses. We look forward to the proposed regulations that will also include service in Afghanistan and Iraq as qualifying service under all laws related to Gulf War and Southwest Asia service. DAV is cautiously optimistic the Training Letter and the accompanying regulatory amendment will lead to more equitable and favorable resolution of claims based on GWI. Equally important, we look forward to measures VBA will adopt that will finally address data integrity issues so that data gathering and reporting will indeed help determine if these new instructions will produce awareness, consistency, and fairness in VBA's handling of disability claims from veterans with service in Southwest Asia. Health Care ``Special Treatment'' Authority In 1993, Congress saw fit to provide ``special treatment authority'' in Public Law 103-210 for VA to provide health care to veterans who served in the Persian Gulf War in the Southwest Asia theater of operations who were exposed to toxic substances or environmental hazards. This special treatment authority is similar to that given to Vietnam veterans who may have been exposed to herbicides.\3\ In 1997, Public Law 105-114 eliminated the requirement that the veteran had to be exposed to toxic substances or environmental hazards, and only required service in the Southwest Asia theater of operations during the Persian Gulf War. In 1998, the authority was extended through 2001,\4\ and Public Law 107-135 (115 Stat. 2446) provided for another extension through 2002. --------------------------------------------------------------------------- \3\ Public Law 97-72 (95 Stat. 1047). \4\ Public Law 105-368 (112 Stat. 3315). --------------------------------------------------------------------------- We thank the Members of this Subcommittee and of the full Committee for reporting S. 1963, the Caregivers and Veterans Omnibus Health Services Act of 2010, and we thank the full Congress for enactment of that bill, now Public Law 111-163, to address the lapse in this special treatment authority that ended in 2002 by making it permanent. Studies have found prescription drugs and over the counter (OTC) medicines were by far the most common treatments that were used for multi-symptom illness of Gulf War veterans. Treatment by relaxation therapy, mental health providers (psychologist, psychiatrist, and trained counselor), herbal medicine, sleep study, and therapeutic massage have been found to be the most common treatments that reduced GWI symptoms. This permanent authority will allow ill Gulf War veterans continued access to VA health care and specialized services provided through the VA's WRIISCs. Need for Effective Evidence-Based Treatment Over 18 years after the war, studies continue to indicate that few veterans with GWI have recovered, or have substantially improved over time. To address this matter, VA providers who are treating Gulf War veterans' illnesses must have effective evidence-based treatment protocols supported by research studies. The myriad symptoms experienced by Gulf War veterans make it very difficult for physicians to diagnose and treat a specific illness. Correspondingly, Gulf War veterans who experience little to no relief from their unique health problems are frustrated at best. Although more is known today about the nature and causes of GWI, important questions remain about improving the lives of ill Gulf War veterans. As this Subcommittee is aware, an important gap in our knowledge exists about effective evidence-based treatment for GWI. The DAV believes more research is needed to advance the knowledge, and promote innovative and effective evidence-based care, to improve the health and quality of life of ill Gulf War veterans. Notably, the 8th report in the Gulf War and Health series from the Institute of Medicine (IOM) recommends a renewed research effort to identify and treat multi- symptom illnesses in Gulf War veterans. While we are hopeful the FY 2010 GWIRP will identify and provide effective interventions for veterans with GWI with additional appropriations being recommended in the FY 2011 Defense Appropriations Act, the IOM noted inadequate numbers of clinical trials have been undertaken to develop more effective and evidence-based treatments for multi-symptom illness. We thank the Subcommittee for holding hearings last year to explore concerns raised by the veteran community and the RACGWVI on GWI research that influences efforts by the research community to, among other things, identify effective treatments for GWI. Since this hearing, the RACGWVI and the IOM have come to an agreement that chronic multisymptom illness is a diagnostic entity associated with service during the Gulf War, and affecting approximately 250,000 veterans. Chronic multisymptom illness is likely the result of genetic and environmental factors and cannot be attributed to stress or other psychiatric disorders. Finally, both agree a major national research program is urgently needed to identify treatments. These agreements are critical toward establishing a much needed comprehensive plan to address specific priority research topics. Accordingly, DAV is concerned with VA's announcement funding $2.8 million for three new research projects without such a plan. Moreover, we are concerned the new steering committee established to guide VA's research program on GWI was not consulted prior to the Department's announcement and that the projects would not favor research involving psychological aspects of chronic multisymptom illness in light of the agreement on this matter by the RACGWVI and the IOM. Tailoring VA Health Care Gulf War veterans are being diagnosed and treated for a wide variety of illnesses and injuries that we believe are consequential to their military service. The DAV has learned that it is important to distinguish the poorly understood, multi-symptom conditions defined as GWI from other diagnosable medical conditions suffered by Persian Gulf War veterans. GWI is a complex of chronic symptoms found at high rates in Gulf War veterans that is not easily explained by standard medical tests and diagnoses. Other health issues that are associated with Persian Gulf War service include amyotrophic lateral sclerosis (ALS) and brain cancers in servicemembers who were exposed to the Khamisiyah demolitions. The RACGWVI estimated that as many as 175,000 veterans, or one in four of those who deployed in the Persian Gulf War, remain ill after their service. Given the magnitude of the problem and the numbers of veterans affected, DAV is concerned the Veterans Health Administration (VHA) is not focusing appropriate efforts and resources to address the needs of this population. For example, in 1999, the National Academy of Science (NAS) recommended that VA establish centers for the study of war related illnesses similar in structure to VA's Geriatric Research Education, and Clinical Centers to apply a proven model of care, research, and education to the issue of deployment health. Such centers would, if established, contribute greatly to the advancement of knowledge in this area. The DAV applauded the establishment of VA's WRIISCs located at VA medical centers in Washington, DC, East Orange, New Jersey, and Palo Alto, California. These centers offer tertiary medical consultation and clinical programs staffed with multi-disciplinary teams of clinicians focused on the deployment health concerns of combat veterans, including those with difficult-to-diagnose or medically unexplained symptoms. The WRIISCs are tasked with assisting VA providers to understand veterans' deployment-related health challenges, provide lessons learned to deliver optimal person-centered care, and perform cutting edge investigations and research. The WRIISCs have a central and important role in VA's health care program for veterans with post-deployment health problems. Despite this important role, VA has not devoted adequate attention or resources to the education of its staff, or outreach to veterans, to make them aware of these programs. We hear time and again from ill Gulf War veterans that their VA or private sector providers did not make them aware of the information, consultation opportunity, and expertise of the WRIISCs. We believe this VA national resource remains largely unrecognized and underutilized. As a practical matter, DAV believes clinical reminders should be used to prompt VA primary care providers to ensure the military history of ill Gulf War veterans is made part of the electronic medical record, exposure examinations are conducted and open pathways to the WRIISCs are provided. VA's core missions are to provide comprehensive prevention, diagnosis, treatment and compensation services to veterans who suffer from service-related illnesses and injuries. Service-related illnesses and injuries, by definition, are military occupational conditions. Accordingly, we believe VA should devise systems, expertise, and recruit and train the necessary experts to deliver these high quality occupational health services. Occupational Health is a medical specialty devoted to improving worker health and safety through surveillance, prevention, and clinical care activities. Doctors and nurses with these skills could provide the foundation for VHA's post-deployment health clinics, enhanced exposure assessment programs, and improve the quality of disability evaluations for VBA Compensation and Pension (C&P) Service. VA should consider establishing a holistic, multi-disciplinary post-deployment health service, led by occupational health specialists, at every VA medical center. Moreover, these clinics could be linked with the WRIISCs in a hub-and-spoke pattern to deliver enhanced care and disability assessments to veterans with post-deployment health concerns. To achieve this ideal arrangement, the WRIISCs and post-deployment occupational health clinics would be charged to---- Work collaboratively with DoD environment and occupational health programs; Identify and assess military and deployment-related workplace hazards; Track and investigate patterns of military and veterans' work-related injury and illness; Develop training and informational materials for VA and private sector providers on post-deployment health; Provide assistance to other VA providers to prevent work- related injury and illness; and Work collaboratively with DoD partners to reduce service- related illness and injury, develop safer practices and improve preventive standards. Likewise, VA needs to improve the capability of its primary care providers to recognize and evaluate post-deployment health concerns. VA and DoD jointly developed the Post-Deployment Health Clinical Practice Guideline to assist primary care clinicians in evaluating and treating individuals with deployment-related health concerns and conditions. This guideline uses an algorithm-based, stepped care approach, which emphasizes systematic diagnosis and evaluation, clinical risk communication, and longitudinal follow-up. On July 26, 2007, VA's testimony before the Subcommittee on Health's hearing included how a health care provider treats a veteran's GWI. VA stated that a provider must, ``go through a very long list of clinical possibilities, take them one at a time, and examine each one fully and do the right diagnostics and try and treat them one at a time.'' Anecdotal reports and Departmental data indicate that VA primary care providers are already stretched thin to deliver routine acute, chronic and preventive care within their short clinic visits. The complex, chronic conditions afflicting veterans with GWI cannot be adequately addressed in a routine visit with a stressed primary care provider. We believe VA providers must gain the opportunity to refer such patients to specialized post-deployment occupational health clinics, and to the WRIISCs for the most complex problems of war- exposed veterans with GWI. Veterans suffering from GWI require a holistic approach to the care they receive to improve their health status and quality of life. VA must establish a system of post- deployment occupational health care if it is to meet its mission and deliver on veteran-centered care. GULF WAR VETERAN EDUCATION AND OUTREACH Education and outreach is only effective if the information provided is timely and accurate, and it penetrates and permeates the target audience. The DAV recently had the opportunity to assist a North Carolina veteran suffering from GWI. His primary care physician had attempted to treat the veteran's symptoms, to no avail. The veteran contacted our office for assistance and we recommended the veteran ask his physician to seek assistance from the WRIISC located in Washington, DC. Unfortunately, the veteran and his physician were not aware of the WRIISC or how to contact that center. They were not aware of the information available on the internet \5\ regarding the WRIISC's national referral program allowing the veteran to self-refer, nor that the primary care physician is able to use the WRIISC referral template in VA's Computerized Patient Record System. --------------------------------------------------------------------------- \5\ http://www.warrelatedillness.va.gov/. --------------------------------------------------------------------------- While in the case of the veteran above, telehealth consultation between the WRIISC, the veteran, and his primary care provider was used to improve the treatment being provided, DAV is concerned that this one example, combined with 2007 VA data showing only 344 veterans have been evaluated between the East Orange, New Jersey, and Washington, DC, WRIISCs since 2001, is indicative of underutilization of this national resource. We continue to receive reports from ill Gulf War veterans who remain confused about specific VA health care programs for GWI. For example, recently we were contacted by a veteran who was under the impression that the Persian Gulf War Registry and examinations for entry on the Registry had been halted. We have no doubt other Gulf War veterans maintain this perception due to a number of factors. The individual responsible for the Gulf War Registry program at each VA medical center was previously called the ``Persian Gulf Coordinator.'' Soon after OEF/OIF began, this position was renamed the ``Environmental Health Coordinator.'' The change in name sought to recognize the environmental exposures that affected Persian Gulf War veterans may also affect OEF/OIF veterans since they are deployed to the same general region. Moreover, OEF/OIF veterans were also exposed to other toxins such as Hexavalent chromium (at the Qarmat Ali water treatment plant in Basra, Iraq), burn pit smoke in several theater locations, and other contaminants. While the Environmental Health Coordinator is responsible for the administrative management of the Gulf War Registry, schedules veteran patients for exposure examinations, and monitors timeliness compliance, the Environmental Health Clinician is responsible for the program's clinical management and performs the actual examinations. Although each VAMC provides access to environmental health clinicians and coordinators, there is variability in knowledge and practice among VAMCs as to when and how to conduct exposure assessments. The DAV is appreciative of the work done by VA's Office of Public Health and Environmental Hazards' website to make access more user- friendly and provide pertinent information that may be useful to ill Gulf War veterans and their health providers. Now available to the public is a directory of local VA Environmental Health Coordinators & Health Clinicians at http://www.publichealth.va.gov/exposures/ eh_coordinators.asp. Direct telephone numbers to the Environmental Agents Service is also on this webpage for veterans to call with any questions or concerns regarding this program.\6\ --------------------------------------------------------------------------- \6\ (202) 461-1013 or (202) 461-1014. --------------------------------------------------------------------------- To assist ill Gulf War veterans seeking benefits and medical care, VA has made available a VA Gulf War Information Helpline 1 (800) PGW- VETS (1-800-749-8387). As a veteran of the Persian Gulf War, I called this Helpline four times in October 2009 to ask for information on whether VA had specific treatments for GWI. This telephone service offers an automated message providing health care information, specific to Khamisiyah and other Gulf War exposures, and eligibility information was also provided. When I was able to speak to three individuals on three separate telephone calls, all asked if I had participated in the Gulf War Registry and if I had filed a claim for compensation benefits. When I asked whether VA had specialized treatments or a specialized center or clinic for veterans suffering from GWI, one indicated that if I were to enroll into the VA health care system that I would most likely be seen by a local VA specialist based on each physical complaint. The other two stated that the local VA clinic or hospital would see to my specific health concerns. Only one mentioned my contacting the Gulf War Coordinator at my local facility. None, however, mentioned the WRIISCs or referred me to VA's website for the Office of Public Health and Environmental Hazards cited above. Notably, these calls are routed to one of eight VA call centers,\7\ which VA's Office of Inspector General (OIG) audited in 2009 and issued Report No. 09-01968-150 on May 13, 2010. The OIG concluded that any one call placed by a unique caller had just a 49 percent chance of reaching an agent and getting correct information. --------------------------------------------------------------------------- \7\ Cleveland, OH; Philadelphia, PA; Columbia, SC; Nashville, TN; Muskogee, OK; St. Louis, MO; Phoenix, AZ; Salt Lake City, UT. --------------------------------------------------------------------------- VA's Gulf War Information Helpline has now been merged with a resource that assists surviving spouses seeking VA benefits, and is now called the Survivors Call Center and Veterans Special Issues Help Line. I recently called the toll free number. It prompts the caller to select assistance for survivor benefits or exposure issues, including those related to the Gulf War. A caller's selecting Gulf War issues brings an automated message with information regarding exposure to nerve agents from Khamisiyah and provides information on VA's special exposure examination and benefits as well as an online computer bulletin board. If not directly routed to an agent, the automated help line offers four options for information on Persian Gulf benefits and services, including medical benefits, disability compensation, and an option to speak with a representative. Having called four times, two agents referred me to my local VA medical center and regional office, with one urging me to file an informal claim over the phone if I had not already done so. The other two agents mentioned the Persian Gulf War Registry and provided the telephone number and extension of the respective Environmental Agents Coordinators. Mr. Chairman, while not perfect, this is an improvement towards standardization of responses and quality of information provided from the calls I made nine months prior. GULF WAR VETERANS' ILLNESSES TASK FORCE (GWVI-TF) This Subcommittee asked DAV to provide our position on the March 29, 2010, GWVI-TF draft report which was subject to a notice with a request for comments by May 3, 2010 in the Federal Register. After VA's review of all comments and recommendations related to the draft report, an updated version of the report will be released. We appreciate the effort taken by the GWVI-TF to produce the recommendations under seven broad categories: Partnerships, Benefits; Clinician Education and Training; Ongoing Scientific Reviews and Population Based Surveillance; Enhanced Medical Surveillance of Potential Hazardous Exposures; Research and Development; and Outreach. This draft report is subject to change pending review of public comments, but DAV generally agrees with its overarching goal to improve services to meet the needs of veterans of the Persian Gulf War. As stated above, DAV believes VA must aggressively pursue answers to the health consequences of veterans' Gulf War service and that the Department must not reduce its commitment to VHA programs that address health care and research or VBA programs that meet the unique needs of ill Gulf War veterans. We note some of the recommendations made in the draft report are not new and have been the subject of inaction for several years without appreciable results. For example, both DoD and VA are required to exchange health information and to develop systems that allow for interoperability of information between the two agencies. However, both departments have been working toward electronic medical record compatibility for more than a decade. While progress has been made and the departments are sharing more information, such as exchanging computable pharmacy and drug allergy data, according to the Government Accountability Office, the departments were not sharing all electronic health data, including for example, immunization records and history, data on exposure to health hazards, and psychological health treatment and care records. Moreover, although VA's health information was all captured electronically, not all health data collected by DoD were electronic--many DoD medical facilities still use paper-based health records.\8\ --------------------------------------------------------------------------- \8\ GAO-09-268. --------------------------------------------------------------------------- As this Subcommittee is aware, there are two plans that contain objectives, initiatives, and activities related to further increasing health information sharing, the VA/DoD Joint Executive Council Strategic Plan (VA/DoD Joint Strategic Plan) and the DoD/VA Information Interoperability Plan (IIP). We are concerned the recommendations in this draft report do not link to these two plans, which are key documents in defining planned efforts to provide interoperable health records. We do agree with the recommendation to establish partnerships particularly with the Joint Interagency Program Office, to function as a single point of accountability for accelerating the exchange of health information between VA and DoD. The draft report also makes recommendations regarding the claims processing procedures and training of personnel related to adjudicating disability claims based on Gulf War undiagnosed illnesses and medically unexplained chronic multi-symptom illnesses. We direct the Subcommittee's attention to our views on this matter in this testimony under the heading, ``Delivering All the Benefits Entitled.'' Another longstanding issue on which DAV has called for action is revamping the outdated and ineffectual education and training tools regarding Gulf War exposures, health outcomes and research that are currently used to prepare VHA and VBA personnel in caring for and assisting ill Gulf War veterans. The Veterans Health Initiative on Gulf War Veterans' Health is an independent study guide developed to provide a background for VA health care providers on the Gulf War experience and common symptoms and diagnoses of Gulf War veterans. We note, this guide was released and last revised in 2002. The information in the guidebook must be reviewed and revised to include the latest research findings and clinical guidelines. In addition, VA must assess the effectiveness of this guidebook and determine if another format should be used that would be more easily accessed and consumed by VHA and VBA personnel. Additionally, while the GWVI-TF agrees with the RACGWVI that identification of new treatments for ill Gulf War veterans is a high priority, it is not highlighted or reflected as a central issue in the draft report. The need for effective treatment is a central issue identified by the IOM, the RACGWVI, and the 25 to 32 percent of the 700,000 deployed Gulf War veterans suffering with multi-symptom illnesses. We direct the Subcommittee's attention to our views on this matter in this testimony under the heading, ``Need for Effective Evidence-Based Treatment.'' Along the same lines as identifying effective treatment of GWI and disseminating such information to VA providers to improve the Department's clinical care focus on GWI, DAV believes VA should consider establishing a post-deployment health service led by occupational health specialists at every VAMC and that these clinics could be linked in a hub-and-spoke pattern with the WRIISCs to deliver enhanced care and disability assessments to veterans with post- deployment health concerns. VA must establish a system of post- deployment occupational health care if it is to meet its mission and deliver on veteran-centered care to veterans suffering from GWI and other veteran population suffering from other hazardous environmental and other toxic exposures. CONCLUSION Mr. Chairman, it is apparent to DAV that VA has a number of programs aimed at patients and providers to assist ill Gulf War veterans. However, VA's approach to the needs of this veteran population has become parochial and fragmented. DAV believes much work remains to ensure Federal benefits and services are adapted to meet the unique needs of veterans suffering from GWI. VA must find ways to meet its obligation to care for the newest and prior generations of disabled veterans without diverting its attention from the actions needed to find the means to diagnose, treat, and cure GWI. DAV believes the answers lie in medical surveillance, high quality health care, and research. Where cure remains elusive, VA must provide timely, accessible, responsive, and equitable benefits and compensation for those who suffer chronic illnesses and disability. Our nation requires no less. Veterans suffering from GWI who file claims for service connection for undiagnosed illness must contend with a slow process that has a low success rate. Moreover, if they seek care at VA, they often receive a combination of piecemeal interventions and symptom-based treatments, about which all longitudinal studies that have evaluated the health of veterans suffering from GWI have reported little improvement.\9\ --------------------------------------------------------------------------- \9\ Research Advisory Committee on Gulf War Veterans' Illnesses. Gulf War Illness and the Health of Gulf War Veterans: Scientific Findings and Recommendations. Washington, DC: U.S. Government Printing Office, November 2008. --------------------------------------------------------------------------- We believe many ill Gulf War veterans have stopped turning to VA or worse have simply given up seeking any type of assistance. We hope some of the recommendations made in this testimony will be seriously considered. Otherwise, providers can only try to teach ill Gulf War veterans how to choose a lifestyle adapted to their disabilities incurred in service in the Persian Gulf War without substantial improvements in their health. As stated at the beginning of this testimony, there is a great need for a true champion from the Administration who will challenge VA to provide a clear path for progress to systematically address GWI issues and ensure that Federal programs aimed at meeting the extraordinary needs of veterans suffering from GWI are adapted to meet them. Mr. Chairman, DAV thanks the Subcommittee for the opportunity to testify and for your efforts in highlighting the needs of our nation's ill Gulf War veterans. This concludes my statement. I will be pleased to respond for the record of this hearing to any questions you may wish to ask with respect to these issues. Statement of Kirt P. Love, Director, Desert Storm Battle Registry, Crawford, TX Dear Distinguished Committee Members: My name is Kirt Love, and I served in the Army as part of C. Co. 141 Signal Battalion while in Operation Desert Shield/Desert Storm in 1990-1991. At this time I am 60 percent service connected but only after a long 8-year fight with VA to do so. There had been two Presidentials involved in my case and finally a meeting with Sec. Anthony Principi staff after a VBA appeal hearing in DC to get what little I have. It shouldn't have been that way to begin with. My protracted illness was gradual and by 1993 I was having such health problems that I lost my home. I moved in with a kind friend as I lingered in much of 1993 and 1994 in a death bed. By then food was like broken glass, and water like battery acid--I was passing my intestinal lining in sheets as a host of other problems made this worse. The doctors of that day had no clue, and only after trying an old veterinarian remedy did I improve enough to regain some function. VA never figured out what was affecting me then or now. By 1996 I wanted to understand what had happened to me and started looking into what happened to our unit during the war. I learned of OSAGWI and began digging on their Web site to find out more. By 1997 I launched a Web site of my own to find other vets and compare their own experiences with my own. I called my effort the ``Desert Storm Battle Registry'' to see if the other ground troops had similar issues. By late 1997 I inventoried the whole DoD OSAGWI declass file server and sent them a list of the over 400 files they had pulled from that server. This became my battle cry as it turned out there were over 6,000,000 files they would not release, and only a heavily censored 43,000 the public would see. At a staggering cost of $150,000,000 to declassify that project and then conceal it from the public. Without those records veterans such as myself had no real substantive evidence in support of what we saw during the war. Like the massive chemical weapons demolitions around my unit in March 1991 that DoD still to this day wants to ignore. Around 1999 I was meeting with multiple entities on the Hill such as the IOM, GAO, Pentagon, PSOB, MHVCB, OSAGWI, and others concerning our plight. The tone was different then because there was oversight all around us. By 2000 that all changed, and by 2001 grass roots groups were no longer welcome at the Pentagon. That would lead to a 10-year decline as veterans were cut off and kept at bay. This I would witness first hand and up close as OSAGWI stopped meeting with veterans. Why, oversight was gone. VA and DoD took advantage of that. By 2002 the GW Research Advisory Committee would be the only entity left that had any input in Gulf War issues. But, they were only research and this didn't help with the benefit/healthcare issues. The years would pass and VA would make sure that anything related to Gulf War was invisible. Programs would go largely ignored and the title removed so that veterans couldn't figure out how they changed. i.e., A Gulf War Referral Center would become a War Related Illness and Injury Study Center. Well, we still couldn't get a referral if we didn't know it existed. After hounding the RAC for years it became necessary to push for another entity. I started in 2006 by proposing the need for another GW coordinating board which is listed in PL 105-368. Others talked me down to an Advisory Committee, and by 2007 the RAC finally made the recommendation to VA for this. The support was soft and they failed to get it. I repackaged this, and sent it through Rep. Chet Edwards. Sec. James Peake agreed to the idea. Of which I then pushed to get on this Committee. I did, and then started the slow process of collecting data. Problem here was VA took advantage of the way the proposal was made to give the Committee an 18-month lifespan and then put ringers on it. Namely, choosing a former Undersecretary of Personnel and Readiness at the Pentagon to Chair the Committee. Many didn't understand, at one time he was in charge of OSAGWI but not quite in the same capacity as former Bernard Rostker. This would become apparent when the Committee toured and its fact finding was passive at best. It showed that the Chairman had his own agenda and wanted this Committee disbanded as quickly as possible. So the results were thin, rushed, and the Committee was quickly disbanded before its deadline without so much as a press release at the end. I was so displeased with the report I dissented at the end, but kept it simple and cited the PDICI as my primary complaint. In truth, much of what I wanted didn't make it into the report and I found myself largely censored as well as continuously chastised by Cragin to scare the others into duplicity with his desires. It was a mostly good ole boy network of former friends of his which gave him controlling interest in the final votes. By Feb 2009 VA would release its August 2008 GWVIS report. Within 3 hours of its release I found numerous problems with the report. Comparing it back to the February 2008 report there were massive numerical changes. Rather than 290,195 files claimed by Gulf war vets, VA was saying it had gone down to 258,317. A loss of 31,878 vets who had applied for benefits. There would be over 8 categories of similar numerical changes of 10 percent or more to the negative. So I wrote VA and told them of what I had found. I told my Committee and they didn't care. From Feb 11th 2009 to April 6th 2008 VA ignored my letter. Even tried to tell me to start from scratch on my request for that data. My committee also ignored this until finally Gerald Johnson dropped the ball that then got passed to Thomas Kniffen. This by then had gotten silly enough that Chairman Cragin saw the need to step in. By June 30th 2009 a subcommittee of the ACGWV met with VBA to discuss the GWVIS. VBA made promises to revamp the whole GWVIS structure and reports. Well, a year has passed since the promise and even today they do not have anything to show your committee on the progress of how these reports have improved. They were to be published July 27th 2010 and I called VBA to find it won't happen. Our committees last meeting would be with Chief of Staff John Gingrich. He announced the Gulf War Illness Task Force that he would Chair. There would be a continuing Gulf War presence at VA and then there would be a report of their own shortly. But, the Task Force was comprised only of 25 internal VA staff that did not have to share their daily work with the public. There would be no Web site, public meetings, or interaction with them externally. By the time they published that report it was painfully apparent that it was being controlled by legacy government personnel providing bad input to send things backwards. The heavy IOM influence and the desire to bring the invisible Deployment Health Working Group was a severe blow of past dysfunction trying to be resurrected. If it didn't work before, how would it improve by bringing it back. Fortunately, the COS would allow public comments of the report which over 200 of us would provide over 250 pages of materials to that effect. I myself posted the first 10 ideas online within hours of this Web site launch, and pushed hard over 30 days to get others to do the same. All said and done, July 22nd 2010 VA announces Gulf War medical research studies. An exercise study, anti depressant study, mind based stress reduction study. It's like 1997 all over again. There are no new specialized external clinics, no new programs, and anything related to our plight that is no more visible now than in 2009. I myself have great reason to be distressed as 20 years after the war find my own current VA medical care no better than when I started my odyssey back in 1993. That despite my best efforts to say the obvious to VA and fight its upper ranks they still don't listen. Rather than be more public they are now more reclusive and invisible than ever. I can't get straight answers from VA after having been on a Federal committee. They have ignored Rep. Chet Edwards' request that I be included in the Task Force work as a subject matter expert. This letter could have been 20 pages long with a tremendous amount of other details. This has been condensed for the sake of this hearing. But, it's high time that one of Congress' Committees needs to step in and take a hard stance with VA on its very form and function. Gulf War veterans deserve better and we should have a voice in our medical care as well as benefits. This hearing will not be enough to do that fact if you base it solely on what data you collect today. We need an oversight body attached to VA on GW issues that doesn't go away in 18 months. Without oversight our issue will languish another 20 years. Thank you for your time. Sincerely, Kirt P. Love Director, DSBR Former member: ACGWV 52D-C. Co. 141 Signal Battalion Statement of Vivianne Cisneros Wersel, Au.D., Chair, Government Relations Committee, Gold Star Wives of America, Inc. ``With malice toward none; with charity for all; with firmness in the right, as God gives us to see right, let us strive to finish the work we are in; to bind up the nation's wounds, to care for him who has borne the battle, his widow and his orphan.'' . . . President Abraham Lincoln, Second Inaugural Address, March 4, 1865 Mr. Chairman and Members of the Subcommittee, I am Vivianne Wersel, the Chair of the Gold Star Wives' Government Relations Committee. Thank you for the opportunity to submit this statement for the record on behalf of Gold Star Wives of America. I am the surviving spouse of Lt Col Rich Wersel, Jr. USMC who died suddenly on February 4, 2005, one week after he returned from his second tour of duty in Iraq. Gold Star Wives of America, Incorporated, founded in 1945, is a congressionally chartered organization of spouses of servicemembers who died while on active duty or who died as the result of a service- connected disability. Our current members are widows and widowers of military members who served during World War II, the Korean War, the Vietnam War, the Gulf War, the conflicts in both Iraq and Afghanistan, and every period in between. Gold Star Wives is an organization of those who are left behind when our nation's heroes, bearing the burden of freedom for all of us, have fallen. We are that family minus one; we are spouses and children, all having suffered the unbearable loss of losing our spouses or fathers/mothers. We are those whom Abraham Lincoln referred when he made the government's commitment ``to care for him who shall have borne the battle, and for his widow, and his orphan''. Today, we highlight important areas of concern regarding survivors of those servicemembers who died as the result of an illness from the Gulf War. Gulf War Illness: The Future of Dissatisfied Veterans We would like to speak to you on behalf of Gulf War veterans who can't speak for themselves. They either died during that conflict, or died later of a service connected illness or injury. GSW represents their survivors. The Secretary of the Veteran's Administration should revisit the Persian resulting from their service Gulf War Veterans Registry that was established under Title 38, Part 2, Chapter 11, Subsection 11, Section 107, ``Evaluation of Health Status of Spouses and Children of Persian Gulf Veterans.'' The program was established to evaluate the health status of spouses and children of Persian Gulf War veterans of 1990-1991. The program was funded to not exceed $2,000,000 and covered a period of time from November 1, 1994 to December 31, 2003. According to the report: Gulf War Illness and the Health of Gulf War Veterans: Scientific Findings and Recommendations published in November 2008, ``No information from VA's Gulf War family registry program has ever been issued.'' Most military families do not have access to Federal Register publications to receive government information, much less reply within a specified period of time. Certain spouses and children of this war continue to suffer illnesses and disorders, as written in the media and reported by veterans and their families. The registry should be revisited and the results made available to those who registered, or need to be registered. VA should publicly broadcast the opening of such a registry to veterans, spouses and children. We are pleased that the Secretary has recognized that the Gulf War veteran's illness is real, and is providing Gulf War veterans the same respect given to Iraq/Afghanistan veterans at VA clinics and hospitals. Full honor and respect should be given to all veterans in need of medical care. No servicemember should suffer a long term illness and/or death because of denied medical care, and no family should witness such a death. We acknowledge improvements on the handling of medical claims and evaluations of veteran's ratings for compensations. However, more work needs to be done for the surviving spouses and children. It is our sincere and strong desire to see the repeal of the SBP/DIC offset for surviving spouses of Gulf War veterans. The offset is an injustice that has been recognized by Congress, The Military Coalition, and the National Military and Veterans Alliance. Many Gulf War veterans' claims were inappropriately processed and the veterans received a much lower disability rating than they should have received. In some cases, veterans who were inappropriately rated, or even worse yet, whose claims were denied, died of the service connected cause within a short time. Their survivors were left without the entitled benefits or had to re-file the claim after the death of the loved one, if they even knew to do so. GSW applauds Congress for the recent legislation that benefits caregivers of wounded warriors who were injured on active duty after 9- 11-2001. However, we are unhappy that wounded warriors and the caregivers of wounded warriors from past wars were excluded from this legislation. Such exclusions demean the contributions and service to this country of those who served in past wars and sacrificed their health to serve this country. Many of those who were injured or ill from past wars are in need of caregiving assistance as much as those injured or ill after 9-11-2001. Children born to those who served in the Gulf War, who were once referred to as Desert Stork Babies, are now of college age. These children, who lost a parent who was serving in the military or due to that service, are eligible for education benefits under Chapter 35, Dependents Educational Assistance. Chapter 35 benefits do not provide enough to cover today's college tuition and expenses. Under the New GI Bill, children of servicemembers who died on active duty after 9-11- 2001 are eligible for the Gunnery Sergeant John David Fry Scholarship which provides adequate financial support for 36 academic months. The children whose parent died prior to 9-11-2001 were not included. The Survivor Benefit Plan (SBP) annuity for surviving spouses is offset dollar-for-dollar by the amount of Dependents Indemnity Compensation (DIC) a surviving spouse receives. The surviving spouses of those who died on active duty after 9-11-2001 are allowed to assign the SBP benefit to the children of the servicemember; the children receive the benefit until they reach the age of 22. Once again, the children of those who died on active duty or as a result of their service prior to 9-11-2001 were not included in this option. Children of those who died on active duty after 9-11-2001 receive active duty TRICARE coverage and dental insurance until they reach the age of 23 (if enrolled full-time in school), but children of servicemembers who died on active duty prior to 9-11-2001 had 3 years of transitional active duty TRICARE, and then were switched to retired TRICARE coverage and had to pay premiums or deductibles. Children of those who died in retirement receive retired TRICARE and must also pay cost shares, deductibles and co-pays. Appropriate VA bereavement counseling is often not available or readily accessible. The only other option available for bereavement counseling is to use TRICARE or CHAMPVA; those who use TRICARE or CHAMPVA must not only pay a fee for each visit, but bereavement counseling results in a diagnostic code for either situational depression or clinical depression. These diagnoses can later be detrimental to the individual when applying for a job or schooling. Mental health counseling using TRICARE Prime requires co pays of $17 (group session) or $25 (individual session) per visit, if seen outside the military treatment facility. Those on TRICARE Extra or TRICARE Standard, incur co pays of 15 percent and 20 percent respectively. For a family with a surviving spouse and three children the cost can be prohibitively expensive. Many of these surviving spouses and children not only participated in the care of the veteran, but also witnessed the death. Caregivers often suffer from a form of PTSD due to the care they provide for the disabled veterans. No counseling or support is provided for the caregivers who care for veterans who were disabled as the result of service prior to 9-11-2001. All surviving spouses should have a casualty assistance officer assigned to assist them with planning the funeral and in obtaining the benefits that are due to them. While surviving spouses of those who die on active duty are assigned a casualty assistance officer, surviving spouses of those who died of a service connected disability and/or in retirement are not assigned a casualty assistance officer. As a result, these surviving spouses often are not aware of the benefits for which they are eligible or the time limits for filing claims. The Army has established Survivor Outreach Service (SOS) offices that assist survivors with benefits and finances. SOS will help any military surviving spouse regardless of the spouse's branch of service; however, SOS offices are located on Army installations and therefore are not readily available to survivors outside those areas. Conclusion: The DIC offset to SBP needs to be removed so the surviving parent has enough income to support college age children and avoid financial hardship themselves. The spouses of those with a severe service connected disability who provide caregiving for their disabled spouses need assistance and support while they are doing the caregiving. Children of those died on active duty before 9-11-2001 and children of those who died of a service connected disability in retirement need to be afforded the same medical and dental benefits as the children of those who died on active duty after 9-11-2001. Surviving spouses and children need bereavement counseling without a diagnosis of clinical or situational depression, and they should not have the financial burden of paying fees for each counseling session. Surviving spouses of those who die after retiring need assistance in obtaining the benefits to which they are entitled. A casualty assistance officer should be assigned to every surviving spouse. Chapter 35 education benefits need to be increased to the level of the education benefits available to children whose parent died on active duty after 9-11-2001. Surviving children of those who died on active duty after 9-11-2001 have until age 36 to use educations benefits; surviving children of those who die of a service connected cause in retirement should also be allowed to use education benefits until they reach the age of 36. Surviving spouses who were full-time caregivers cannot be expected to use education benefits while caring for a disabled veteran 24/7. The time limit on education benefits needs to be 20 years after the death of the military spouse or, better yet, the time limit needs to simply be removed. Programs such as Marine Corps and Army Long Term Case Management and the Army's SOS program need to be available to the surviving spouses and children of all branches of military service. Thank you for your attention. National Gulf War Resource Center Topeka, KS July 26, 2010 Chairman Robert Filner House Committee on Veterans' Affairs 335 Cannon House Office Building Washington, D.C. 20515 (202) 225-9756 Dear Chairman Filner and Members of the House Committee on Veterans' Affairs, The National Gulf War Resource Center (NGWRC) regrets that we will not be able to be at the hearings on July 27th due to other commitments. I would like this opportunity to submit a written statement for the record. The NGWRC is a non-profit organization based in Topeka, Kansas, focusing on issues related to Gulf War Illnesses. The NGWRC leads the battle in identifying problems facing veterans of Southwest Asia and their families, along with finding practical solutions. NGWRC requests that Congress enact legislation that would add to CFR Title 38 a standard for all raters to be trained and tested on undiagnosed illness, TBIs, and PTSD claims. The sending out of training letters is not working; most all of the raters have little to no time to read them due to their workload. The backlog of claim will only be reduced by having well trained raters. To take 3 to 5 days a month for classroom training and test will do more in six months than any training letter. We have worked with veterans and their service officers all over the country whose claims were denied because the rater did not know or would not follow the law regarding these claims. I have seen claims turned down for the following presumptive illnesses: Chronic fatigue syndrome, Fibromyalgia, and Irritable bowel syndrome. Being a presumptive for their service in the gulf, the veteran only needs to show they served in the gulf and that they had the illness on or before 31 December 2011 ratable to 10 percent or more. In the last 2 months, we have worked with over 200 veterans where the regional office had denied the claim stating that it did not start in service. This is one example of many more claims we have worked around our country. We need a mandatory training program set up for all adjudicators and their supervisors to attend. By making it mandatory we will take care of a large problem of many adjudicators not going to any training after they get their job. As a part of this training, there needs to be a closed book test on the classes. Everyone that fails the test will need to redo the class and take the test until they pass. Once an adjudicator is certified to work an undiagnosed TBI or PTSD claim, then that adjudicator will be allowed to rate those types of claims. There should also be a quality control system so that as an adjudicator's claim comes back, either as a notice of disagreement or as a remand, the adjudicator must be retrained in that area again and retested. As before he will need to pass the test before he can rate claims in that area. The NGWRC asks the House Veterans' Affairs Committee to work closely with the House Armed Services Committee and the Appropriations Committee to insure that the Congressionally Directed Medical Research Program (CDMRP) to not only budget, but also is appropriate $30,000,000 for the purpose of funding treatments for the estimated 200,000 Gulf War veterans suffering from chronic multi-symptom illnesses. This money will once again go into the DoD Congressionally Directed Medical Research Program. With many of the returning veterans starting to show problems too, the number of sick is much higher. NGWRC supports the program because the (CDMRP) is an innovative, open, peer reviewed program focused on identifying effective treatments, with first priority for pilot studies of treatments already approved for other diseases, so they could be put to use immediately. Nearly 20 years since the start of the war, one-third to one-fourth of Gulf War veterans continue to suffer from chronic multi-symptom illness, according to the IOM report released this year, and there are still no effective treatments. We would like $10,000,000 of the funding to go back to Dr. Haley's research being done in Texas. The Congress approved $75,000,000 for his research at UTSWMC over a five year time frame. With the VA now redirecting the funding to different studies and the last of Dr Haley's studies needing to be completed, this money is needed now. To see the importance of the finding, we also ask that you do a joint hearing to hear from Dr. Haley on what his research has found and how it will help the veterans. We were not happy when the VA spent $11 million of the $15 million on a piece of equipment that is not for the use of research into Gulf War treatment. NGWRC requests that Congress remove the presumptive deadlines in the CFR 38 section 1117. By removing the deadline for Gulf War Illness, you would be doing what was done for the veterans of Vietnam and their exposure to Agent Orange. We still have veterans coming home from Southwest Asia that are getting sick. Researchers still do not know fully why we are sick, but they do believe it most likely is due to the different chemicals. In many of the briefings from researchers, they all say that as time goes on, there will be even more problems affecting us. NGWRC would like Congress to enact legislation granting a presumption of service connection for our Gulf War veterans who deployed to the theatre of operation and who are diagnosed with auto- immune diseases, such as multiple sclerosis (MS), Parkinson's disease, and auto-immune diseases that act like MS but cannot be diagnosed as MS yet. VA has granted service connection based on the Secretary's authority under existing regulations. These grants should be made permanent for existing and future veterans so that these very sick and highly vulnerable veterans aren't needlessly forced to fight diligently when the science is so clear. The November 2008 VA report does show the three leading causes for the chronic multi-symptom illnesses are chemicals. We are just now starting to understand how these chemicals cause these different auto-immune disorders. While strong evidence linked ALS and brain cancer to Gulf War deployment, we believe the research on auto-immune disorders similar to ALS shows the same results. In conclusion, the NGWRC would like to thank you for your continued interest in this important subject. We regret we are not able to appear in person. We look forward to working with you on these critical issues identified here as well as on other issues impacting our Gulf War, Iraq War, and Afghanistan War veterans, their immediate access to the VA's high-quality healthcare, and the prompt receipt of disability compensation benefits. Thank you, James A. Bunker President 866-531-7183 Statement of Major Denise Nichols, RN, MSN, USAFR (Ret.), Vice Chair, National Vietnam and Gulf War Veterans Coalition Thank you for accepting my for the record testimony in relationship to the hearing on July 27, 2010 on the Gulf War veterans. I come to you with issues, that are probably not being addressed in this hearing but are significant and need to be identified and assessed. This will be addressed as a listing to at least have on the record of other outstanding needs identified by Gulf War veterans and Gulf War veteran advocates in the community. We wish to recognize the VA recent efforts to address the Gulf War Illness, Research, and Benefits. But we want to be on record that more Gulf War veterans from outside the VA system and all veteran organization have equal abilities to interact from the beginning and throughout the process. WE wonder why the Task Force had to be limited to internal VA and not open meetings. We are so willing to interact and help to make the issues more clear and address so many issues that have not been covered or discussed. We thank them for the efforts to have a task force, to have a draft and to have a chance to submit written comments. But this does not go far enough. Meetings need to be open and available to listen in on if we can not be there and a way to interact as the process occurs all the way through. It would be a step forward to use all the internet and telecommunications that are now available in every department/agency in the government. Our President campaigned on full transparency and in response the doors need to be opened wide. We also encourage an open phone line to be available to have our comments heard because our Gulf War veterans with significant neurological cognitive problems have trouble in writing their comments but are still able to verbalize! It could be like the crisis lines now being used by the VA but lines devoted to input of suggestions and problems that don't just affect one veteran. We feel that the VA hospitals could be used i.e. live telephone audio visual hook up in their auditoriums and that way feedback could occur with Gulf War veteran patients, family members, veteran groups, health care professionals, doctors, researchers, benefits personnel, and other concerned personnel. This would truly be dynamic process and result in getting a wealth of ideas and ways to improve. The final changes to that draft should have also been open before the final product for input for that report and for future areas that need to be addressed. It is through opening the process completely that we will get the full range of suggestions for changes. Personally during that time my family faced a major health problem and I did not offer as much in feedback as I could have at the window of opportunity. But this happens to others too, so why just have one window of opportunity? Obviously the draft was changed several times after the initial feedback time period. Again I encourage VA to open the door to more veterans and organizations that would want a chance to serve yet again and have a more active dynamic communication. Now for problems that still need to be addressed. 1. One area of concern is that veterans and doctors do not have a list of tests that need to be done as a minimum for Gulf War Illness. This list of tests needs to be a main item on the front page of the VA website. Suggestions for additions and or changes need to be addressed. 2. The Gulf War veterans must also see any new guidelines that are being provided to the medical staff concerning Gulf War Illness. WE suggest that to be available on the internet the draft of changes and the final product. Many veterans have been health care providers and could input suggestion for changes. 3. A couple of areas that we have had many veterans discussing is the ability to be seen and evaluated re dental problems, vision, and hearing problems. WE at least need to have those problems assessed and then a team of the appropriate specialist need to review these assessments, to write reports, articles for professional journals to evaluate if there is unidentified needs that relate to the whole health of the veterans of Gulf War even if they are not rated! 4. We also are hearing from veterans that have had significant spinal problems re disc degeneration and we wonder if data is being compiled on this significant problem. And how is that information being shared not only within the VA but outside the VA and to the Gulf War veterans. We also get reports of significant skin problems/rashes/ infections, other body system problems, and diagnosed illnesses. We feel that sharing of this information points out several health care problems and that adequate complete communication among health care providers and the veterans concerned are not being shared and compiled. A system needs to be developed within and outside the VA on problems that are being seen by all the health care providers within the VA and civilian health care professionals that also see Gulf War veterans. Communications to the Gulf War veterans and their family members is also absent. 5. There are no support groups at each VA local that veterans, their families, health care professionals and social workers can attend monthly. There is a severe need for this type of function. An example would be to compare it to cancer patients or heart patients and civilian CFS support groups. The family members and the veterans have identified this as a real need. They feel alone and need this type of support! 6. There is a problem that has surfaced concerning the deaths that have occurred within the Gulf War veteran community. The problem is originally and still is that it has been easier to get rated for PTSD while significant health problems--CFS, fibromyalgia, all the other symptoms--were not rated and or denied. 7. One of the problems is that veterans that had claims and had been rated through years of difficulty (Gulf War Illness) have died. One example is that the individual veteran was in process of trying to have other physical problems rated, he was rated for PTSD but he died 3 months short of ten year period and therefore his widow and dependent children are denied DIC. To leave dependent children without DIC benefits is simply cold hearted! Another veteran had been rated PTSD but had the neurocognitive problems and had an accident on a tractor that killed him and his dependents are being left without DIC. The Gulf War veterans who are dying are not being honored and their dependents are left out in the cold. Again visible wounds get all the attention while more invisible illnesses are being ignored, brushed off, not rated and then the survivors suffer with no DIC. These are just two of the most recent families/survivors of Gulf War veterans that I personally was made aware of in just the last couple of weeks! The survivors and dependents of deceased Gulf War veterans that suffered from illnesses after the war get no focus or attention as compared to those with visible wounds. 8. There needs to be a triage system set up for claims! Those that are at risk of dying i.e. more complex multiple symptoms, cancers, diagnostic problems re cardiac, blood disorders, renal and liver problems need a fast tracking for benefits as well as those homeless veterans or veterans that are in dire financial status. WE have triage in medical care, why don't we have a nation wide triage for benefits? A coding system could be developed in which the veteran and/or family member can self identify, the medical care provider can rate, the social worker can rate, or other professionals including their service officer if they have one--when the claim needs a special triaging. 9. Aid and Attendance or Nursing Assistance care available thru Social Workers at the VA needs to be updated for the Gulf War veterans that need assistance at home. Many spouses have not been working when they could have if they had someone to be there for their veteran spouse that are having neurocognitive problems, balance problems, mobility problems. Many veterans are without spouses and need assistance at home. One veteran is having to rely on their children to help them. It is interesting that programs have been developed for the severely visual injured of OIF/OEF but these regulations have not been revamped for the invisible wounds of environmental exposures. This needs to be done ASAP and a widespread communication process developed to the health care professionals, social workers, and the veteran patients and families to get them the help they have needed for many years. One veteran that has severe multiple problems and the overwhelming fatigue (which is not an adequate term for us that suffer with this) told me that it took all they had to make it to the grocery store and that it may take a week for them to get the groceries just into their house! One veteran identified the problem re the income factor on Aid and Assistance needs to be adjusted for the younger Gulf War veterans where they may have VA and SS benefits and a spouse that is still able to work gainfully but can't in order to care for the ill Gulf War veteran spouse. 10. The system including health care and benefits need to get rid of the antagonistic situation that has existed for 20 years at least particularly for those with environmental illnesses/Gulf War Illness. The Gulf War veterans need to have a faster track to handle benefit problems. The veterans and their families are suffering on a large scale and it has lasted 20 years without adequate corrective actions. 11. It is not a problem just involving benefits personnel that need training on rating Gulf War Illness but also health care providers! I was a professional nurse and was not aware of the problems with undiagnosed illnesses, ME, CFS, multi symptom complex diseases until I experienced my illness. Doctors are the same and that affects the diagnoses, care, and treatment of the Gulf War veterans. The VA could be the role model and network with medical universities that train physicians to make a change that would benefit veterans and civilian sufferers of CFS, ME, Fibromyalgia. 12. The time is critical now in the past year with the information of a potential XMRV retrovirus that was discovered in research and published almost a year ago. The research to replicate that discovery has to be fast tracked and Gulf War veterans with Gulf War Illness need to be included in those research studies. 13. The areas of research that the veterans of the Gulf War deployed and nondeployed feel need further research involves DU (inhale and ingested), vaccines (not limited to anthrax but the whole list of vaccines used in the Gulf War period), sand/silica in the deserts of Saudi, Iraq, and now OEF veterans, and contamination from returning equipment. WE do want the biomarkers, diagnostic tests and treatment research but we as a group feel the other factors have not had adequate research for the potential of health problems whether singularly or as synergistic effects. We are invigorated with the VA RAC GWI effort and the recent NAS IOM report that finally are showing progress in finding some answers and finally getting away from stress theories. 14. We want more research based on physiological and no more stress psychological research. We want researchers and health care professionals to have a means to interact more and share on a frequent basis! 15. There is a need for a bulletin board or blog that is interactive between researchers and physicians. One funded VA researcher has been trying to interact with more of the health professionals seeing Gulf War veterans and other specialized physicians at his own VA and he told me it is a catch as catch can method. They need the internet system and educational cross sharing. There needs to be real time and archival taping and audiovisual interactive sharing of the VA RAC GWI Committee meetings to each VA Hospital. This way clinicians, researchers, and the Gulf War veterans can get the information and education needed as a starting point. Only thru the ability to communicate will the needs of the Gulf War veterans be met quicker. 16. We cannot just have researchers separate from the clinicians and the patients, the veterans! WE need the concept of units set up in at least one VA in each State and/or regionally that addresses research and clinical practice in an interactive setting for research to clinical practice to occur more rapidly for Gulf War veterans or environmentally exposed veterans. WE have polytrauma, spinal cord, MS, etc specialty care centers in the VA why not environmentally exposed specialty care centers. And the WRIIS that are on the east coast and west coast do not meet the needs. They were set up as second opinion and just have not met the needs of the Gulf War veterans on the whole. 17. There needs to be not only a task force at the central VA headquarters but a Task Force involving each VA hospital or at least one in each State and then a Regional Task force. We need a robust system at each level and that is absent. 18. The Environmental Health Headquarters at the central VA needs to be evaluated. The staffing needs to include an office and veteran staffing labeled Gulf War Illness/syndrome/ill defined conditions. It needs to have a complaint area, a resource center, medical research, a benefits staff specific for Gulf War Illnesses, and a health care professional and physician to deal with health care issues. 19. The recently named Gulf War Steering Committee charter, mission, duties, and members has not even been featured on the VA website! 20. Each of these areas within the VA should open their doors to input and assistance from the Gulf War veteran advocate community at large and not just to VSOs or to Gulf War veteran organizations that have been outspoken. There are many talented Gulf War veterans that seek to be involved in helping improve the situation and solve problems. We have many Gulf War veterans that were health care professionals that want to help, just open the door! 21. The Gulf War veteran community was outraged that the funding and work at the UTSW medical school, a VA collaborative research effort was stopped. This was a program we all agreed should be continued. The researcher's effort to find the best testing for Gulf War veterans that could be passed on to the VA at large was a huge setback and we encourage the situation to be resolved and the research and work to be funded. The recent announcement of what was funded is a slap in our face. The research project was truly ready to make major gains in being able to study other groups of Gulf War veterans besides the Navy Seabees. In this means the replication of what was found in one cohort could have been expanded. This in itself is a loss that can not be explained satisfactorily. Work out the problems identified or else the whole Gulf War veterans affected population suffers as an outcome of VA OIG actions. What is the greater need? 22. We need the VA to also accept help from physicians on the civilian side that have worked on the issues of CFS/ME/Fibromyalgia not just for health care but in accepting their input for rating of benefits. The Gulf War veterans need their expertise and ability to educate VA physicians. 23. For Congress and the Senate: The process of hearings on Gulf War Illness needs to be not only for the House and or Senate but jointly. Joint sessions i.e. hearings would be the ideal approach to keeping both Houses fully informed and engaged. 24. We complement you on having this hearing but we would like to offer a suggestion that one hearing a year is not sufficient to address the Gulf War Illness that affects such a huge percent of the troops that served. We also strongly suggest that individual Gulf War veterans and Gulf War veterans' advocates be included in all these hearings not just the VSO's, but the veteran advocates that you are not having testify, formally in this way, if done including the other advocates you will get a more complete listing of problem areas that have yet to be discussed and examined. We also think that the information on hearings and witnesses has almost become like top secret and feel the open communication to all veterans and veterans advocates begs for improvement. 25. I would be remised if I didn't also address the nondeployed Gulf War veterans that have experienced ill defined illnesses the same as deployed, they are truly being lost in the process. Thank you, for your consideration of the most recent 25 items that Gulf War veterans and Gulf War veteran advocates have been discussing. We hope you will include this as submitted testimony for the record. Statement of Anthony Hardie, Member, Research Advisory Committee on Gulf War Veterans' Illnesses; Gulf War Steering Committee, U.S. Department of Veterans Affairs; and Gulf War Illness Research Program Integration Panel, Congressionally Directed Medical Research Program, U.S. Department of Defense Thanks you to the Subcommittee for holding this third hearing in a very serious series seeking solutions on the Gulf War Illness issues that have plagued so many thousands of Gulf War veterans for nearly 20 years. As you already know, I am one of those 250,000 veterans affected by Gulf War Illness issues. I particularly thank Chairman Mitchell and Ranking Member Roe for your bipartisan, professional, committed leadership on this issue. I also want to thank VA Secretary Eric Shinseki and VA Chief of Staff John Gingrich for their courageous, principled stance on championing issues related to Gulf War veterans. As veterans themselves, we look to them with hopeful anticipation and continue to wish for their encouragement in achieving so many long-overdue and deeply needed goals on our behalf. From my own experience helping to lead one of the largest State veterans agencies in the country, I know that this leadership can sometimes mean battling those within your own organization, who can range from well-intentioned to apathetic to resistant to change to even those who think they know better than leadership and believe they and their ideas and ways of doing things will be there long after the latest batch of appointees are gone. But I also believe from my personal experiences and from meeting with VA leadership that their vision of culture change at VA can indeed be achieved. Much of what needs to be said has been said already elsewhere, including in public comments to the current and former VA advisory committees, VA's new, internal Gulf War Veterans' Illnesses Task Force, and during the many Congressional hearings held over the last two decades on issues related to the health and well being of Gulf War veterans. And, I continue to have faith in the new VA leadership, and I continue to believe that they will be effective on these issues as long as they keep them directed at the high level they are currently directed, right from the Office of the Secretary. Instead, I want to take this opportunity to highlight just some key issues. New National Research Project. First, from my experience serving on various federal research advisory committees related to Gulf War veterans' illnesses, it is clear that what is needed most urgently is fulfillment of the Institute of Medicine's recommendation for a Manhattan Project style, nationally directed research program focused on finding and funding the best science to unlock the etiology of, and effective treatments for the toxin- and other environmental agent- induced illnesses of veterans of the 1991 Gulf War. And, as has been previously shown in other hearings and testimony, much of the hundreds of millions of dollars of previous research was misdirected, misspent, and made no difference in the health and lives of Gulf War veterans. Continuing to fund Gulf War Illnesses research piece-meal, without a broader strategy, is inefficient and best and may well be ineffective at worst, leaving Gulf War veterans to continue to try to endure without effective treatments to improve our health and lives. This large-scale research project most likely cannot be created without Congressional action. New Kinds of Research. Second, I have become convinced from my work with the brilliant scientists next to whom I have served on these various committees that the key to success lies in funding interdisciplinary, multi-focused, consortium-type research projects rather than funding one lone scientist testing a single theory. Simplifying Gulf War Illness claims. Third, with regards to benefits, we as a nation can and must achieve better results with regards to the service-connected disability claims of veterans of the 1991 Gulf War. VA must clarify, or Congress must enact legislation to clarify the current disability claims eligibility contained in 38 CFR 3.117. Veterans with chronic multi-symptom illness should be rated for ``chronic multi-symptom illness'' as a single entity, not have to prove each individual symptom, ensure that each symptom subset is ``undiagnosed,'' and then be subjected to separate ratings for each symptom or set of symptoms. Correcting flaws in Gulf War presumptive rating schedule. Fourth, in previous testimony and public submissions, I have provided details of highly problematic issues related to service connection for fibromyalgia, a presumptive condition for Gulf War veterans under 38 CFR 3.117 which is currently only allowable to a maximum of 40 percent when it should be allowable to 100 percent. And, the symptoms of severe irritable bowel syndrome, a second presumptive condition for Gulf War veterans can be substantially or even totally disabling should not be limited to just 30 percent as it is currently under 38 CFR 3.117. And, the diagnosis of fibromyalgia should not preclude service-connection for chronic fatigue syndrome (a third presumptive condition for Gulf War veterans that is allowable by itself up to a 100 percent rating, as it should be) as it currently does. While I have already made specific recommendations to VA on these issues, implementing the change suggested in my third point, above, would be another way to alleviate these issues of overlap and unfairness. VA Staff Accountability. Finally, VA staff must be held accountable for implementing the changes called for by Gulf War veterans, the scientific community, Congress, and VA appointees. Even still, the advisory committees on which I serve are not always consulted on issues within their purview, advised of decisions made independently by VA staff without advisory committee consent, or heeded in the sound recommendations they make. These issues internal to VA and the U.S. Department of Defense have been at the root of many of the concerns of Gulf War veterans, and have surfaced repeatedly, including as recently as last week with the issuance of VA's new press release on funding $2.8 million in new Gulf War health research. As a member of VA's new Gulf War Steering Committee (GWSC) and the Congressionally-chartered VA Research Advisory Committee on Gulf War Veterans' Illnesses, I was surprised to learn of VA's newly funded research related to the health of Gulf War veterans, not from VA staff as a member of these committees, but from a writer from the Veterans Today news website who emailed me the news, which was most surprisingly issued in the form of a press release. As a member of these committees and a typical ill Gulf War veteran, I also find the nature of the studies funded to be of concern. None appear to be related to treatments for exposures from among the nearly comprehensive list of potentially hazardous exposures detailed in the Persian Gulf War Veterans Act of 1998. I find it extremely disappointing that not only were the two committees with oversight and advisory roles yet again not provided input or even advance notice of these decisions (yet again, same as always in the past), but even the news of these funding decisions was not provided by anyone at VA (and still has not been provided) to our members on the VA's GWSC and the VA's RACGWVI. As Congressional and VA leaders know, these committees have substantial, Congressionally- and VA-chartered responsibilities related to overseeing VA's performance of research related to ill Gulf War veterans. These ``oversights'', if we generously call these serious issues by that name--imply that VA officials at several levels and in several capacities within VA do not take seriously the oversight and advisory roles of these committees. Indeed, the message from these actions is that VA staff can and will simply disregard the oversight and advisory committees created specifically, in part, to help prevent the range of problematic issues described in this letter. This appears to be in direct contravention to the culture change and policy changes advocated by Sec. Shinseki and VA Chief of Staff John Gingrich. Additionally, I found at least one statement of fact in the VA's press release that is cause for substantial concern. Number of Gulf War veterans with Gulf War Illnesses Downplayed. The VA press release says, ``In the years since they returned, nearly a quarter of these Veterans have experienced chronic symptoms . . . known collectively as `Gulf War Veterans' illnesses.' '' This statement contradicts the VA-contracted Institute of Medicine Volume 8 study on Gulf War Veterans' health, released in April 2010, and cited later in the press release, which states the number of veterans at 250,000--at 35.9 percent, this number is substantially higher than VA's claim in the release of, ``nearly a quarter''. For many years, VA has downplayed the severity of Gulf War veterans' serious and disabling illnesses, and this latest instance is unacceptable and should be corrected immediately in the online version of this press release. But most importantly of all, the substance of the three studies is deeply concerning. Instead of focusing on known Gulf War toxic exposures (as shown in the list in the Persian Gulf War Veterans Act of 1998) and ameliorating the range of health effects known to be associated with those exposures, instead, one of the three VA studies is still, after 20 years of criticism for this kind of focus, focused on stressand psycho-social adaptation to disability without treating the underlying physical health conditions (``mindfulness-based stress reduction''). To put it simply, of course mindfulness training provides some small bit of health to people in their personal adaptation to conditions of pain and disability and no new, expensive study is needed to show that--but most importantly this adaptation has absolutely no bearing on the underlying and all too real physical health of the 35.9 percent of Gulf War veterans still suffering from Gulf War Illnesses. To portray this stress management study as somehow providing meaningful treatment to veterans is deeply disappointing, disingenuous, and a disgrace to all 250,000 Gulf War veterans still suffering from very real physical illness related to their toxic exposures. Similarly, a second of the three announced studies is about exercise to alleviate pain in Gulf War veterans. Again, this area has been excessively studied by VA, DoD, and the scientific community, and even non-scientist health writers regularly note that exercise helps people with fibromyalgia and chronic pain, but worsen the fatigue and others symptoms in people suffering from chronic fatigue. Gulf War veterans hardly need a new, expensive study to tell them more about what is already known. The third of the three VA announced studies is an animal study conducted over four years to assess the efficacy of drugs with anti- depressant, anti-oxidant, and anti-inflammatory properties. At the end of those four years, presumably it will take some time to publish the results, after which, if success is found, new multi-year studies to study the efficacy of the treatments in humans will be required. It is incomprehensible why, after 20 years of waiting, these treatments are not being tried in ill Gulf War veterans directly rather than in study design that will require more studies thereafter before treatments ever reach the Gulf War veterans who need them. Even if this study of anti- depressants turns out to be effective, instead, this study will take years before any potential benefit can pave the way for yet another study, meaning many more years of waiting by the 35.9 percent of Gulf War veterans still suffering from Gulf War Illnesses. In addition to the fact that adaptations to disability purporting to be ``treatment'' have already been excessively studied by VA and DoD over the last 20 years at costs ranging into the millions of dollars, to put it simply, after so many years of VA missteps, these latest missteps by VA are simply unacceptable, as I am sure Sec. Shinseki and you would agree. Most importantly, these kinds of missteps are fully preventable if the oversight and advisory bodies cited above are actively engaged by VA staff and their recommendations heeded. But again, these committees were not only not consulted; they still haven't even been informed of these decisions made without their input on issues directly within their purview. All these issues suggest that despite all the expressed good intentions, staff inside VA continue through their actions--whether intentional or not--to undermine these efforts. Perhaps they want to do things the way they've always done them, perhaps they believe that what they're doing is ``right,'' perhaps they want this Administration to fail, perhaps they have their own agendas, or perhaps they just don't get it. In any case, given all of these facts and circumstances, on behalf of my fellow Gulf War veterans, I gave the following specific questions to VA leadership--questions I believe any reasonable person would have given the circumstances: 1. What specific corrective steps are being taken immediately by VA leadership to ensure that the stated oversight and advisory roles of the GWSC and RACGWVI are respected and followed by VA staff at all levels? These bodies cannot perform their intended functions when they are completely bypassed by VA staff. 2. When will VA begin a treatment-focused research program--as called for in the more than a decade-old Persian Gulf War Veterans Act of 1998--that is based on alleviating the known health effects associated with the known toxic exposures of the 1991 Gulf War? VA officials note in this press release, ``The IOM report noted that the illnesses seen in Gulf War Veterans cannot be ascribed to any psychiatric disorder and likely result from genetic and environmental factors,'' yet not one of these new expensive new studies focuses on environmental or genetic factors that caused 250,000 Gulf War veterans' illnesses. 3. When will VA correct the factual error in the press release? Again, in one place in VA's press release VA cites the number of the 696,842 Gulf War veterans still suffering from Gulf War Illnesses as ``nearly a quarter,'' when the Institute of Medicine, contracted by VA, shows this number to be far, far higher--at least 250,000, or 35.9 percent. That's one-third again higher than ``nearly a quarter''. More broadly, this latest instance of downplaying the severity of Gulf War Illness appears to be indicative of a continuing, long term trend within VA. 4. When will VA provide the rewritten press release to every Member of the two VA Committees that have oversight over Gulf War veterans' health issues? (GWSC and RACGWVI) For the last year, I have been using my leadership role to reassure my fellow ill Gulf War veterans--including through the Gulf War health news website I publish, 91outcomes.com, which has had more than 25,000 readers in the mere 16 months since it was created--that change is coming, and that VA has a new focus and a dramatic culture shift that will almost certainly lead to effective treatments for Gulf War veterans' toxin-induced disabilities. For most of us, like any other disabled veteran, all most of us has ever wanted is our health restored to a state as close as possible to its pre-war state. Science tells us that may very well be possible, that effective remedies are within our reach--but the choices made in selecting these three studies do not reflect the direction that the scientists tell us should be the way forward. VA's serious factual, procedural, and research-focus errors have shaken my growing trust in the new VA. But, I look to VA leadership to take immediate, good-faith steps to remedy these serious issues. And, I remain optimistic that VA Secretary Eric Shinseki and VA Chief of Staff John Gingrich can find ways to effectively cause VA staff to conform to their stated vision of the ``culture change'' desperately needed by the at least 35.9 percent of Gulf War veterans still suffering from the life-long effects of their Gulf War toxic exposures--a vision that so many of us out here share with great hope and expectation. If ever there was leadership that can indeed get this right, I believe it is them, aided by the able, committed, and professional leaders in Congress including you on this Committee. Please, don't let us down now when the end is finally in sight. Again, thank you for holding today's hearing, for all that you have done for all veterans, and all that you continue to do. MATERIAL SUBMITTED FOR THE RECORD Committee on Veterans' Affairs Subcommittee on Oversight and Investigations Washington, DC. July 28, 2010 Honorable Eric K. Shinseki Secretary U.S. Department of Veterans Affairs 810 Vermont Avenue, NW Washington, DC 20420 Dear Secretary Shinseki: Thank you for the testimony of John R. Gingrich, Chief of Staff, U.S. Department of Veterans Affairs, accompanied by Victoria Cassano, M.D., MPH, Director, Radiation and Physical Exposures, Office of Public Health and Environmental Hazards; Joel Kupersmith, M.D., Chief Research and Development Officer; and Bradley Mayes, Director of the Compensation and Pension Service, Veterans Benefits Administration at the U.S. House of Representatives Committee on Veterans' Affairs Subcommittee on Oversight and Investigations hearing that took place on July 27, 2010, entitled ``Gulf War Illness: The Future for Dissatisfied Veterans.'' Please provide answers to the following questions by Friday, September 10, 2010, to Todd Chambers, Legislative Assistant to the Subcommittee on Oversight and Investigations. 1. American Legion's testimony describes veterans' frustration at how Gulf War vets from the 1991 Gulf War were initially treated. It goes on to describe a perceived bias at the VA for this group of veterans: ``if the answer is not obvious, quit looking or send them to mental health.'' Can you please address this perceived bias? 2. Recently, the VA announced $2.8 million for research projects related to Gulf War Illness. The VA has repeatedly stated that the care of our Gulf War veterans is a top priority of the Department. Do you believe that the research money you have invested thus far for Gulf War Illness is reflective of this sentiment? 3. What can the VA say to those Gulf War veterans out there who have pretty much given up on VA ever making a diagnosis or providing treatment? 4. In the Veterans of Modern Warfare testimony, they discuss the disparity of the presumptive condition of Fibromyalgia. Fibromyalgia can only be treated at 40 percent under the current rating schedule. Do you think the VA should review this rule so that veterans with this condition could be rated higher? a. Can you guarantee today that the VA will review this rule and get back to us about your decision and how you reached your conclusion? 5. VMW's testimony discusses the concern of the Gulf War Task Force report's effort of Secretary Shinseki dissolving with the appointment of a new Secretary. What can you say to veterans who have concerns about what faith should Gulf War veterans have in the ability of VA to carry on this initiative across time? 6. One of the frustrations of the Advisory Committee was that the Gulf War Veterans Information System database had been corrupted. To date, according to Mr. Cragin, the issues with this data system have not been addressed. Can you please validate this and explain why this database has not yet been fixed? a. And if something as seemingly simple as fixing a database has not been corrected, what larger problem do you think are left broken? 7. How much interest has the new RFA's attracted from the VA research community? a. And does the VA have a comprehensive research plan? 8. Given the problems and opportunities we're hearing, is VA prepared to rethink its research program and make it successful in curing this terrible illness? 9. Can you assure us that nothing will be done to jeopardize the independence of the Research Advisory Committee from the VA regular staff? 10. How will the Department apply the lessons learned from the history of developing presumptions for Agent Orange for those who served in Vietnam to issues found in veterans who served during the Gulf War as well as in the current conflict? 11. What progress is being made to improve dialogue and information sharing between the Department of Defense and the VA, when servicemembers are potentially exposed to harmful bio-toxins, and other materials? 12. If, as stated during testimony, the term ``Gulf War Veterans'' could refer to all veterans of conflicts in Southwest Asia during this period, including veterans of Operation Iraqi Freedom and subsequent conflicts in this theater, what is the Task Force doing to also involve the Department of Defense in order to make certain that exposures which have occurred and may still be occurring in this theater are not missed by the Task Force? 13. What is the timeline the Department has planned for building the partnerships with the Deployment Health Working Group (DHWG), and the Data Transfer Agreement? 14. What efforts are being made to ensure that the training letters being issued on the exposures during the Gulf War conflicts are used to help benefits offices in adjudicating claims for veterans? 15. When do you anticipate publishing the final report of the Task Force? Thank you again for taking the time to answer these questions. The Committee looks forward to receiving your answers. If you have any questions concerning these questions, please contact Martin Herbert, Majority Staff Director for the Subcommittee on Oversight and Investigations at (202) 225-3569 or Arthur Wu, Minority Staff Director for the Subcommittee on Oversight and Investigations at (202) 225-3527. Sincerely, David P. Roe Harry E. Mitchell Ranking Republican Member Chairman MH:tc __________ Questions for the Record The Honorable Harry Mitchell, Chairman The Honorable David Roe, Ranking Republican Member Subcommittee on Oversight and Investigations House Committee on Veterans' Affairs ``Gulf War Illness: The Future for Dissatisfied Veterans'' July 27, 2010 Question 1: American Legion's testimony describes veterans' frustration at how Gulf War Vets from the 1991 Gulf War were initially treated. It goes on to describe a perceived bias at the VA for this group of veterans: ``if the answer is not obvious, quit looking or send them to mental health.'' Can you please address this perceived bias? Response: The Department of Veterans Affairs (VA) has not received any complaints from patients of the type of bias towards veterans of the Gulf War cited above. There are many avenues to gain input from veterans including but not limited to Patient Advocates, Veteran Service Officers meetings, and local VA Consumer Councils. While VA has not heard this concern expressed until this request, we will follow up with the American Legion to better understand this issue and engage in identifying ways to improve communications and address this concern, since we do not believe it is an accurate depiction of VA's approach to care. VA orientation to care has been, and continues to be, providing a thorough and comprehensive clinical assessment of the problems presented by a veteran and treating those problems as effectively and efficiently as possible. This orientation to care is reinforced by VA policy to provide a comprehensive assessment of both the physical and mental health issues of all veterans who present to VA for care. If veterans present with problems in thinking, emotions or behavioral problems, VA providers should undertake a mental health and psychosocial assessment and provide treatment as needed. While diagnosis is important in developing treatment approaches, VA assesses and addresses the specific problems presented by each veteran, even if he or she does not fit a specific diagnostic category. This has been VA's approach before, during and after the Gulf War. VA Clinical Practice Guidelines for Major Depression, Post- Traumatic Stress Disorder (PTSD) and Substance Use Disorders (SUD), first published in 1996, provide evidence-based guidance for assessing and treating veterans with these disorders. Currently, veterans of all service eras are screened for PTSD, depression and alcohol problems when they present to VA for care. A comprehensive medical history and physical examination is a part of this comprehensive assessment. VA has established three War Related Illness and Injury Study Centers across the country to provide comprehensive assessments for veterans with complex or difficult to diagnose conditions. Question 2: Recently, VA announced $2.8 million for research projects related to Gulf War Illness. The VA has repeatedly stated that the care of our Gulf War veterans is a top priority of the Department. Do you believe that the research money you have invested thus far for Gulf War Illness is reflective of this sentiment? Response: VA's goal is for ill Gulf War veterans to become well, and we will continue to encourage more research to achieve this objective. VA is committed to maintaining funding levels for Gulf War research as close as possible to $15 million per year. VA exceeded the $15 million target for fiscal year (FY) 2009, and currently projects at least $9.7 million in Gulf War research spending for FY 2010. Previous VA-funded Gulf War research conducted clinical trials of new therapies for pain, fatigue, cognitive deficits (attention, concentration and memory), and gastrointestinal problems; made significant contributions to our understanding of the scope and persistence of chronic symptoms experienced by Gulf veterans; examined biomarkers (imaging, genetic, biochemical) that may be developed into objective diagnostic tests for ill Gulf War veterans; and used animal models to examine underlying causes of Gulf War veterans' illnesses and identify therapeutic targets for development of new treatments. VA recently issued a request for applications for research studies focused on Gulf War veterans' Illnesses. This request is the most recent phase of an ongoing VA effort to identify the causes and treatments for these complex illnesses. The three studies funded by the recently announced $2.8 million will focus on testing or developing treatments for chronic pain, fatigue and cognitive function (including attention, concentration and memory problems), which are among the most common and debilitating symptoms of Gulf War veterans' illnesses. These treatments have been used for medical conditions with similar symptoms (including chronic fatigue syndrome, fibromyalgia, and chronic cancer pain). Question 3: What can the VA say to those Gulf War veterans out there who have pretty much given up on VA ever making a diagnosis or providing treatment? Response: It is very important for VA to restore any Gulf War veteran's trust and confidence in VA's health care system that may have been lost since the start of the Gulf War. Many Gulf War veterans have been extremely frustrated about not receiving a specific diagnosis for their illnesses. We are, nevertheless, absolutely committed to providing the best health care for all Gulf War veterans even if we cannot provide a specific diagnosis for their health problems. VA has made significant progress and will continue to work to develop diagnoses and treatments for veterans with undiagnosed or difficult to diagnose conditions. In the meantime, VA has developed treatment and management approaches for many of the symptoms Gulf War veterans report. VA is also trying to make the process of applying for compensation and care easier for these veterans by creating presumptive service connection for several conditions. In sum, VA believes it is the best source for veteran-centered care for all veterans, including those of the Gulf War. It is VA's obligation to serve as advocates for veterans whether they be seeking health care, benefits or other services from the Department. Through its actions, VA has demonstrated its commitment to advocating for veterans including Gulf War veterans. Question 4: In the Veterans of Modern Warfare testimony, they discuss the disparity of the presumptive condition of Fibromyalgia. Fibromyalgia can only be treated at 40 percent under the current rating schedule. Do you think the VA should review this rule so that veterans with this condition could be rated higher? Response: VA conducted a public Musculoskeletal Forum on August 10, 2010, as part of VA's active effort to revise the Musculoskeletal portion of the VA Schedule for Rating Disabilities (VASRD). We are currently reviewing the findings. VA will propose any changes to the VASRD that are necessitated by current medical science and earnings loss information in a proposed regulation. This will include any changes to Fibromyalgia. Question 4(a): Can you guarantee today that the VA will review this rule and get back to us about your decision and how you reached your conclusion? Response: VA cannot make any specific guarantees as to results or outcomes; however, VA is committed to systematically reviewing the VASRD and incorporating any updates that are necessitated by current medical science and earnings loss data. Question 5: VMW's testimony discusses the concern of the Gulf War Task Force report's effort of Secretary Shinseki dissolving with the appointment of a new Secretary. What can you say to veterans who have concerns about what faith should Gulf War veterans have in the ability of VA to carry on this initiative across time? Response: The Report of the Task Force on Gulf War Veterans Illnesses was not simply an analysis of the situation and recommendations, rather it is a plan of action based on a culture change that can and will be sustained. It embodies VA's philosophy that we serve as advocates for veterans. The Task Force's recommendations will become part of VA's governance. The action plan will be incorporated in strategic planning, training, and budgeting as appropriate. VA has already begun to implement key recommendations and has put forward changes and improvements in regulations, clinician and claims adjudication training, and medical surveillance programs. While key positions of the Task Force will remain in place, the ultimate goal of the Task Force is to change VA's culture to the point that top-down leadership is not necessary to see its implementation. The Task Force remains in place and will continue to actively address the concerns raised by Gulf War veterans and provide an annual report on its progress. Question 6: One of the frustrations of the Advisory Committee was that the Gulf War Veterans Information System database had been corrupted. To date, according to Mr. Cragin, the issues with this data system have not been addressed. Can you please validate this and explain why this database has not yet been fixed? Question 6(a): And if something as seemingly simple as fixing a database has not been corrected, what larger problem do you think are left broken? Response: VA is no longer using Gulf War Veterans Information System (GWVIS). GWVIS will be replaced by the Southwest Asia Veterans System (SWAVETS) which will be used to generate statistics on both Pre- 9/11 and Post-9/11 Gulf War Era Veterans. The new database system will integrate both VA benefits and health care utilization information. The first pre-9/11 Gulf War Era report will contain utilization information for VA compensation, pension, and health care. Over time, other VA benefit information such as education, vocational rehabilitation and employment, and home loan guaranty will be integrated into the system. Representatives from VA Office of Policy and Planning (OPP), Office for Information and Technology (OI&T), the Veterans Benefits Administration (VBA), and the Veterans Health Administration (VHA) have collaboratively worked together to conduct operational assessments and develop the necessary processes, framework, and system architecture required to generate the two integrated reports. An initial report for the pre-9/11 Gulf War Era cohort using SWAVETS is planned for completion by September 30, 2010. Also by October 1, 2010, VA will have a DoD-verified database of pre-9/11 Gulf War Era veterans for report and analysis uses. Question 7: How much interest has the new Requests for Applications (RFA) attracted from the VA research community? Question 7(a): And does the VA have a comprehensive research plan? Response: VA leadership has brought about a cultural attitude shift by encouraging research related to Gulf War Veterans' Illnesses. This has a multiplier effect, as more information on Gulf War Veterans' Illnesses brings in more interested and qualified researchers. VA saw a considerable increase in the number of applications in response to the most recent request for applications. These proposals underwent peer review to assess whether they were scientifically meritorious and responded to the needs of our veterans. Three proposals were considered ready and were funded. All of the investigators received written critiques, which will allow those not selected for funding in this round to improve their proposals and submit them again. VA has made it a priority to conduct research on illnesses affecting Gulf War veterans, so it will continue to provide incentives to encourage our researchers to focus on these issues. VA plans to release subsequent Gulf War requests for applications every 6 months, and as an added incentive to bring new investigators into the field, the maximum annual budget allowed for submissions to these RFAs was raised from $150,000 to $500,000. VA has a two-fold approach for increasing research relevant to Gulf War veterans. In the short term, VA will address the immediate urgency of understanding and finding new treatments for ill veterans of the 1990-1991 Gulf War. VA included more than 80 percent of the Research Advisory Committees on Gulf War Veterans' Illnesses (RAC) report and Institute of Medicine (IOM) recommendations for the requests for applications. The new studies already approved under this recent request for applications meet those needs. In the long-term, VA will develop a new National cohort of Gulf War veterans of a significantly large size to conduct long-term studies and ensure the most scientifically rigorous and advanced research possible. VA plans to conduct genetic studies to determine which veterans may be especially susceptible to exposures and design treatments for them. VA is also expanding the Gulf War Biorepository to collect a broad variety of tissues from Gulf War veterans. The Biorepository is currently focused on brain and spinal cord from patients diagnosed with amyotrophic lateral sclerosis (ALS). VA recently formed a Gulf War Steering Committee which reports back to the Research Advisory Committee on Gulf War Veterans' Illnesses (RAC) and the National Research Advisory Committee (NRAC). VA will utilize advice from the Gulf War Steering Committee, NRAC, and RAC, as well as information from IOM, to manage the direction and scope of VA's Gulf War research program, including collaborations with other Federal agencies to ensure its research portfolio on Gulf War Veterans' Illnesses is appropriate. Lastly, VA is hiring a new Director of Deployment Health who will coordinate deployment health activities in VA's Office of Research and Development. The new director will be designated to coordinate specific activities in collaboration with various DoD and other Federal Government agencies. VA funds a variety of studies on deployment health issues and the expertise and ability to provide high-level scientific knowledge across these broad areas of deployment health will be an important role. This person will be keenly aware of emerging issues while also remaining aware of the range of issues that affect veterans of all ages. The new Director of Deployment Health will also be responsive to veterans and their needs as a result of deployments. Question 8: Given the problems and opportunities we're hearing, is VA prepared to rethink its research program and make it successful in curing this terrible illness? Response: Gulf War research is a priority for VA, and our response to Question 7 provides considerable detail regarding the breadth of work the Department is doing in this area. Question 9: Can you assure us that nothing will be done to jeopardize the independence of the Research Advisory Committee from the VA regular staff? Response: VA greatly values the work of the RAC and its advisory role in helping to guide VA on the needs of Gulf War Veterans' Illnesses. The RAC and its independence are integral to VA's work, and the Department will continue working with the RAC so that Gulf War Veterans receive the best care possible. The RAC serves as a Federal Advisory Committee (FACA) to VA and therefore, operates under the authorities and rules of a FACA Committee. As a FACA Committee comprised of individuals external to VA, VA is responsible for the payment of expenses incurred by the Committee. Also, RAC must meet publicly with a designated Federal official from the VA present, compile reports and make recommendations to the VA. According to the RAC charter, ``The Committee is charged with reviewing previous medical research and other relevant medical knowledge, and with making recommendations for future research.'' VA uses RAC recommendations in addition to the Institute of Medicine (IOM), a wide array of scientific literature and input from veterans to guide its research priorities. All documents, meeting minutes and recommendations produced by the RAC are open to the public as are the Committee meetings. The appropriate checks and balances are in place to ensure the RAC remains independent while meeting its obligations to VA in assisting to guide research priorities for Gulf War veterans. Question 10: How will the Department apply the lessons learned from the history of developing presumptions for Agent Orange for those who served in Vietnam to issues found in veterans who served during the Gulf War as well as in the current conflict? Response: As an advocate for veterans, VA has adopted a proactive posture toward potential toxic battlefield exposures. For example, the Department has developed a comprehensive and collaborative program with the Department of Defense (DoD) to identify, screen, and follow servicemembers and veterans exposed to sodium dichromate at the Qarmat Ali water purification plant in Iraq. By developing contemporaneous medical surveillance programs for veterans with known environmental and occupational exposures, VA will be able to provide more timely diagnoses related to exposure; ameliorate the effects of these exposures; and drive preventive efforts by DoD to help avoid such exposures in the future. When looking at the history of presumptions related to Agent Orange, as well as those applicable to the first Gulf War, VA must acknowledge that such presumptions have evolved to their current state, in part, because of a lack of accurate exposure data. Therefore, the resulting presumptions must be fairly applied to all veterans who served in the respective theater, irrespective of actual of exposure and the level thereof. While this problem still exists in the current conflict (such as those exposed to burn pit toxins), DoD has made advances in tracking individual troop locations, thereby enhancing their knowledge of individual exposure data. Further, DoD is actively engaged in sharing certain exposure data with VA, such as through the VA/DoD Deployment Health Working Group (DHWG). VA was able to use selected information obtained through this venue to publish its training letter (TL 10-03) on environmental hazards in Iraq and Afghanistan. VA was also able to establish its Qarmat Ali medical surveillance program with information obtained through the DHWG. Essentially, one of the most important lessons learned from widespread exposure events in past conflicts is that DoD must accurately track troop movement and hazardous exposures, and relay such information to VA. VA must then utilize such information to inform its healthcare providers and its claims adjudicators in order to provide a better path to direct service connection, as opposed to presumptive service connection. Consequently, VA can target presumptions, if appropriate, at those veterans with confirmed hazardous exposure when medical data supports a relationship between their current disability and the hazardous exposure. Question 11: What progress is being made to improve dialogue and information sharing between the Department of Defense and the VA, when servicemembers are potentially exposed to harmful bio-toxins, and other materials? Response: The lessons learned from Agent Orange and the first Gulf War (Operations Desert Storm/Desert Shield) resulted in a significant improvement in communications between DoD and VA. We are working closely to evaluate exposures both from an environmental and a clinical perspective. The medical surveillance program for Qarmat Ali veterans and DoD active and civilian personnel clearly shows how this cooperation can benefit veterans and their family members. Furthermore, VA and DoD cooperation in long-range epidemiologic investigations, such as the Millennium Cohort Study, allows for much more robust information gathering that will improve our ability to detect health trends in veterans in the future. Question 12: If, as stated during testimony, the term ``Gulf War Veterans'' could refer to all veterans of conflicts in Southwest Asia during this period, including veterans of Operation Iraqi Freedom and subsequent conflicts in this theater, what is the Task Force doing to also involve the DoD in order to make certain that exposures which have occurred and may still be occurring in this theater are not missed by the Task Force? Response: VA is in the process of better identifying separate cohorts that are considered part of the ``Gulf War Veteran'' population. Dividing this population by period of service (e.g. conflict 1990-1991; stabilization 1991-1997 etc.) will certainly help in correlating conditions to specific place and time. DoD is moving forward with better area and individual monitoring for environmental hazards. VA and the veterans we serve will greatly benefit from this increased ability of DoD. In addition, VA remains actively engaged with DoD through the DHWG to obtain as much information as possible about veterans' exposures and translate that information into programs and services of benefit to veterans. One example of this is the medical surveillance program for veterans affected by exposures at Qarmat Ali (as discussed in the response to Question 11). Question 13: What is the timeline the Department has planned for building the partnerships with the Deployment Health Working Group (DHWG), and the Data Transfer Agreement? Response: There is an overarching Data Use Agreement already in place. The Data Transfer Agreement is currently being developed cooperatively through the DHWG. Despite the fact that this agreement is not final, DoD and VA have shared necessary information on exposures and individuals potentially exposed to environmental hazards when situations requiring such sharing arise. Two examples of this sharing include the Camp Lejeune ``Historical Drinking Water'' database, and the names and contact information of veterans potentially exposed to sodium dichromate at Qarmat Ali. Question 14: What efforts are being made to ensure that the training letters being issued on the exposures during the Gulf War conflicts are used to help benefits offices in adjudicating claims for veterans? Response: VA took significant steps to ensure that all appropriate personnel received training. In addition to issuing the training letters to all VA claims adjudicators, VA also conducted two nationwide training sessions on processing disability claims from Gulf War Veterans based on undiagnosed illnesses and diagnosed medically unexplained chronic multi-symptom illnesses. Sources of exposure to environmental hazards, as well as evidence gathering and medical examination scheduling, were explained. These training sessions were conducted live via Microsoft Live Meeting and attendance at the training was mandatory. Question 15: When do you anticipate publishing the final report? Response: The Report is in the final stages of Executive Branch clearance and will be released as soon as it is completed.