Written by Anthony Hardie, 91outcomes.com
91outcomes.com) - Nearly 60 of the nation's veterans service organizations joined together this week to express grave concerns about the VA's handling of Gulf War veterans research, health, and benefits in their diplomatically worded policy recommendations report, The Independent Budget for Fiscal Year 2014.
The report, issued on Feb. 5, 2013, was authored by the VFW, DAV, AMVETS, Paralyzed Veterans of America, and 54 other veterans service organizations (VSO's.
In it, the VSO's noted their concerns regarding VA's lack of effective treatments, lack of a clear VA strategic plan on Gulf War research, concerns regarding VA changes to a RAC-approved plan, and failure to create new presumptive conditions recommended by the Institute of Medicine in a 2010 report.
The VSO's also noted their concerns regarding a June 2012 "no confidence" vote by the Research Advisory Committee on Gulf War Veterans' Illnesses (RAC-GWVI) and a sharp VA decrease in Gulf War funding as,
"contribut[ing] to the lagging interest among researchers who would otherwise commit themselves and their careers in Gulf War illness research, further marginalizing ill Gulf War veterans."
The full Persian Gulf War Veterans section of the Independent Budget in its entirety is below.
*SOURCE: The Independent Budget for Fiscal Year 2014, released Feb. 5, 2013, pp. 118-122.
Persian Gulf War Veterans
The Department of Veterans Affairs [VA] must aggressively pursue answers to the health consequences of veterans’ Gulf War service. VA cannot reduce its commitment to Veterans Health Administration programs that address health care and research or Veterans Benefits Administration programs in order to meet other important and unique needs of Gulf War veterans.
In the first days of August 1990, in response to the Iraqi invasion of Kuwait, U.S. troops were deployed to the Persian Gulf in Operations Desert Shield and Desert Storm. The air assault was initiated on January 16, 1991. On February 24, 1991, the ground assault was launched, and after 100 hours, combat operations were concluded. Approximately 697,000 U.S. military service members served in Operations Desert Shield or Desert Storm. The Gulf War was the first time since World War II in which the reserves and National Guard were activated and deployed to a combat zone. For many of the 106,000 who were mobilized to southwest Asia, this was a life-changing event.
After their military service, Gulf War veterans reported a wide variety of chronic illnesses and disabilities. Many Gulf War veterans have been diagnosed with chronic symptoms, including fatigue, headaches, muscle and joint pain, skin rashes, memory loss, difficulty concentrating, sleep disturbance, and gastrointestinal problems. The multisymptom condition or constellation of symptoms has been referred to as Gulf War syndrome, Gulf War illness (GWI), or Gulf War veterans’ illnesses; however, no single, unique illness has been definitively identified to explain the complaints of all veterans who have become ill.
According to the VA study Health of U.S. Veterans of 1991 Gulf War: A Follow-Up Survey in 10 Years (April 2009), 25 percent to 30 percent of Gulf War veterans suffer from chronic multisymptom illness above the rate of other veterans of the same era who were not deployed. This and five earlier studies confirm that many years after the war ended, approximately 175,000 to 200,000 veterans who served in-theater remain seriously ill.
The signs and symptoms reported by ill Gulf War veterans are similar to fibromyalgia (FM) and chronic fatigue syndrome (CFS), which are ill-defined conditions such that debate remains as to what should be considered essential diagnostic criteria and whether an objective diagnosis is possible. Other ill Gulf War veterans who do not meet the diagnostic criteria for FM or CFS are consigned to the “undiagnosed illness” and “medically unexplained chronic multisymptom illnesses” category. Without a definitive cause or diagnostic criteria, no characteristic laboratory abnormalities and no test to diagnose, policies and protocols for an effective response from VA in the areas of research, benefits, and health services aimed at improving the lives of ill Gulf War veterans remain elusive.
Building a Base of Evidence
Since the Gulf War, federal agencies have sponsored numerous research projects related to GWI. Although a number of extremely important studies and research breakthroughs received funding support, overall, federal programs were not focused on addressing the Gulf War research issues of greatest importance.
Testimony provided during hearings in 2009 before the House Committee on Veterans’ Affairs pointed to a number of research challenges that have impeded steady progress, including the lack of adequate documentation of exposures, differing case definitions of Gulf War illness, and the weight given to animal and human studies in evaluating research findings for the purpose of determining causation.
The Independent Budget veterans service organizations (IBVSOs) are concerned that, if left unaddressed, GWI research will continue to be hampered and veterans suffering from GWI will not receive proper relief. On April 9, 2010, the Institute of Medicine (IOM) released Gulf War and Health: Health Effects of Serving in the Gulf War, Update 2009. In this report the IOM expert committee noted that virtually all the reports in the Gulf War and Health series have called for improved studies of Gulf War and other veterans.
The Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) appointed by the VA Secretary in 2002 was directed to evaluate the effectiveness of government research in addressing central questions on the nature, causes, and treatments of Gulf War-related illnesses. The RACGWVI made specific recommendations for VA’s GWI research funding.174 The IBVSOs urge VA to adopt these recommendations that will directly benefit veterans suffering from GWI by, among other things, establishing by consensus an evidence-based case definition for GWI, creating a comprehensive research plan and management structure, and answering questions most relevant to their illnesses and injuries. Heightening this concern is a critical need for a comprehensive and well-planned program to address other problems faced by disabled Gulf War veterans.
The Need for Effective Treatment
In light of the continuing decline in health status, function, or quality of life of ill Gulf War veterans, the primary question for the IBVSOs is whether Gulf War veterans are receiving effective, evidence-based treatments for their health problems. Last year The Independent Budget for FY 2013 called on VA to commission the IOM to update its 2001 report, which attempted to identify effective treatments for Gulf War veterans’ health problems.175 In response, Congress passed P.L. 111-275, “Veterans’ Benefits Act of 2010,” requiring VA to contract with the IOM to conduct a comprehensive review of the treatments for chronic, multisymptom illness in Gulf War veterans and determine the best treatments.
The law also requires the IOM to make recommendations on how best to disseminate information on best treatments throughout VA, additional scientific studies and research initiatives to resolve areas of continuing scientific uncertainty, and any such legislative or administrative action as the IOM deems appropriate in light of the results of its review.
While we eagerly anticipate this IOM report with the hope that it will result in a comprehensive GWI research plan and well-designed health-care programs to address the needs of ill Gulf War veterans, research continues for effective treatment.
In its [2011 annual] report, the RAC-GWVI notes two treatment pilots showing improvement in some symptoms of Gulf War multisymptom illness.176 It further notes, “[t]hese studies are not cures and need to be replicated in larger samples. However, they are encouraging signs that the Institute of Medicine 2010 Gulf War and Health report is correct in recommending ‘a renewed research effort with substantial commitment to well-organized efforts to better identify and treat multisymptom illness in Gulf War veterans.’ In his preface to the report, Dr. Stephen Hauser, chairman of the IOM committee, emphasized the need ‘to speed the development of effective treatments, cures, and, it is hoped, preventions…[W]e believe that, through a concerted national effort and rigorous scientific input, answers can likely be found.’ ”
Each year since the dramatic decline in overall research funding for GWI in 2001, the IBVSOs have urged Congress to increase funding for VA and Department of Defense (DOD) research on GWI. The DOD’s Office of Congressionally Directed Medical Research Programs has managed the Gulf War Illness Research Program [CDMRP-GWIRP] since FY 2006, but this program did not receive funding until FY 2008, with $10 million. Since then, Congress has provided funding at various levels.177 [$5 million (FY 2006), $0 (FY 2007), $10 million (FY 2008), $8 million (FY 2009–2011), $10 million (FY 2012), $20 million (FY2013), $30 million (FY2014)]
For FY 2014, the IBVSOs urge Congress to provide the funding level necessary for this research program to achieve the critical objectives of improving the health and lives of Gulf War veterans.
While Congress continues to generously provide much needed GWI research funding, the IBVSOs are concerned with the direction of VA research, and its implications for the research community and ill Gulf War veterans.
The Direction of VA Research
Within the Department of Veterans Affairs, two organizations, the Office of Research and Development (ORD) and the Office of Public Health (OPH), are involved in Gulf War research, and internally coordinate and share information. In early 2011, the ORD and the OPH initiated formalized quarterly meetings of senior staff and, as appropriate, scientific program managers and VA investigators.
Instances such as the RAC-GWVI comments and recommendations to suspend conducting VA’s follow-up study of a national cohort of Gulf War and Gulf War-era veterans (Gulf War Follow-Up Study) and to the changes made to the post-January 23, 2012, version of VA’s Gulf War Research Strategic Plan are cause for great concern with the direction of VA GWI research.
The RAC-GWVI noted the survey instrument developed by VA’s Office of Public Health and Environmental Hazards for the Gulf War Follow-Up Study requires significant changes to enhance the quality, utility, and clarity of the information to be collected. Specifically, the proposed survey fails to collect data on the most pressing health issues related to Gulf War service, while collecting excessive information on more peripheral concerns.178 In fact, VA’s ORD determined this survey will not adequately characterize Gulf War multisymptoms or provide a baseline for the large Gulf War national biorepository project currently under development, and is leading a separate effort to develop a suitable survey instrument.179
ORD development of VA’s Gulf War Research Strategic Plan started in 2011 and is intended to address the recommendations contained in the IOM report, Gulf War and Health: Health Effects of Serving in the Gulf War, Update 2009. Review by the RAC-GWVI and the National Research Advisory Council (NRAC) indicates the ORD has adopted NRAC recommendations in the most recent version of the strategic plan but has resulted in a vote of no confidence by the RAC-GWVI.180
In addition, the IBVSOs are concerned over the precipitous drop in VA funding for GWI research from $13.9 million in FY 2010 to $6 million in FY 2011.181
Further, of the $15 million committed in FY 2013 for VA Gulf War research, only $4.86 million was spent.
All of these factors contribute to the lagging interest among researchers who would otherwise commit themselves and their careers in Gulf War illness research, further marginalizing ill Gulf War veterans.
Effectiveness of Compensation, Pension, and Ancillary Benefits
Practical Data Finally Provided
The IBVSOs applaud VA for creating the Southwest Asia Veterans System (SWAVETS), a data system that is much more robust than the Gulf War Veterans Information System, which contained data discrepancies yielding impractical reports. The SWAVETS uses enhanced statistical linkages between VA and DOD data along well-defined subgroups of deployed and nondeployed veteran populations. We particularly appreciate the use of Veteran Benefits Administration diagnostic codes and ICD-9 diagnostic codes, providing VA health-care and benefits utilization by Gulf War veterans with greater granularity. We urge VA to continue issuing this report to the public.
Change in VA Health-Care System to Address Needs
A longitudinal study of Gulf War veterans found that prescription drugs and over-the-counter medicines are by far the most common treatments used for the multisymptom illness of Gulf War veterans.182
Moreover, established treatment regimens available through VA have been identified that alleviate Gulf War illness symptoms. Unfortunately, such treatments are insufficient to halt the decline of ill Gulf War veterans’ health or function status, or quality of life.
Veterans suffering from GWI require a holistic approach to the care they receive in order 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 veteran centric care to this population.
VA’s War Related Illness and Injury Study Centers (WRIISCs)—located in Washington, D.C.; East Orange, New Jersey; and Palo Alto, California— have a central and important role in VA’s health-care program for veterans with post-deployment health problems. The WRIISCs offer a national referral program and provide comprehensive multidisciplinary evaluations. They are an educational resource for VA clinicians and veterans and their families; they provide telehealth services and exposure assessment clinics; and they conduct clinical treatment trials.
Despite this important role, VA has not devoted adequate attention or resources to the education of its non-WRIISC staff or outreach to veterans to make them aware of these programs. Many Gulf War veterans who are ill and their private-sector providers are generally unaware of the information, opportunity for consultation, or specialized expertise of the WRIISCs. Thus, the IBVSOs believe this national resource remains largely unrecognized and underutilized.
VA should better utilize the expertise of the WRIISCs to ensure that their resources are increased to match the growing demand.
Occupational health is a medical specialty devoted to improving worker health and safety through surveillance, prevention, and clinical care activities. Physicians and nurses with these skills could provide the foundation for the VHA’s post-deployment health clinics and enhanced exposure assessment programs, and improve the quality of disability evaluations for the VBA’s Compensation and Pension Service.
VA should consider establishing a holistic, multidisciplinary post-deployment health service led by occupational health specialists at every VA medical center. Moreover, 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. To achieve this objective, the WRIISCs and post-deployment occupational health clinics could be charged with:
- · working collaboratively with DOD environmental and occupational health programs;
- · identifying and assessing military and deployment- related workplace hazards;
- · tracking and investigating patterns of military service members’ and veterans’ occupational injury and illness patterns;
- · developing training and informational materials for VA and private-sector providers on post deployment health;
- · assisting other VA providers to prevent work related injury and illness; and
- · working collaboratively with DOD partners to reduce service-related illness and injury, develop safer practices, and improve preventive standards.
One of VA’s core missions is the comprehensive prevention, diagnosis, treatment, and disability compensation services of veterans who suffer from service-related illnesses and injuries. Service-related illnesses and injuries, by definition, are military occupational conditions and exposures. Accordingly, VA should devise systems, identify expertise, and recruit and train the necessary experts to deliver these high quality occupational health and benefits services.
Likewise, VA needs to improve the capability of its primary care providers to recognize and evaluate post-deployment health concerns. In approaching this task, VA and the DOD jointly developed the Post-Deployment Health Clinical Practice Guideline to assist VA and DOD primary care clinicians in evaluating and treating individuals with deployment related health concerns and conditions. This guideline uses an algorithm-based, stepped-care approach that emphasizes systematic diagnosis and evaluation, clinical risk communication, and longitudinal follow-up.
RECOMMENDATION: VA should establish by consensus an evidence-based case definition for Gulf War illness (GWI) and create a comprehensive research plan, research operational plan, and management structure.
RECOMMENDATION: Congress should conduct vigorous oversight on the direction of VA research and its implications with the research community and ill Gulf War veterans.
RECOMMENDATION: VA and other federal agencies funding GWI research must ensure that research proposals are of high quality, based on such considerations as the quality of the design, the validity and reliability of measures, the size and diversity of subject samples, and similar considerations of internal and external validity.
RECOMMENDATION: Congress should maintain its commitment to provide sufficient funding for VA’s research program to permit it to resume robust research into the health consequences of Gulf War veterans’ service and to conduct research on effective treatments for veterans suffering from Gulf War illnesses. The unique issues faced by Gulf War veterans should not be lost in the urgency to address other issues related to armed forces personnel who are currently deployed and to veterans more recently discharged.
RECOMMENDATION: VA should review and revise the Veterans Health Initiative Independent Study Guide for Providers on Gulf War Health Issues and the Institute of Medicine committee reports Gulf War and Health to include the latest research findings and clinical guidelines.
RECOMMENDATION: To properly assess and tailor existing VA benefits for ill Gulf War veterans, VA should gather more meaningful data that will result in an accurate database than that currently available from the Gulf War Veterans Information System.
RECOMMENDATION: VA should move with all deliberate speed to include the list of those conditions in the Gulf War and Health: Health Effects of Serving in the Gulf War, Update 2009 that were found to have at least met the limited or suggestive evidence criteria as presumptive conditions. These conditions should also be listed separately and distinctly from those disabilities due to undiagnosed illnesses.
RECOMMENDATION: The Veterans Health Administration should establish post-deployment health clinics, enhance exposure assessment programs, and improve the quality of disability evaluations for the VBA Compensation & Pension Service. To deliver high-quality occupational health services, VA should consider establishing at every VA medical center a holistic, multidisciplinary, post-deployment health service led by occupational health specialists.
*SOURCE: The Independent Budget for Fiscal Year 2014, released Feb. 5, 2013, pp. 118-122.