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."
*****
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.
Recommendations:
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.
