[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]
GULF WAR: WHAT KIND OF CARE ARE VETERANS RECEIVING 20 YEARS LATER?
=======================================================================
HEARING
before the
SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS
of the
COMMITTEE ON VETERANS' AFFAIRS
U.S. HOUSE OF REPRESENTATIVES
ONE HUNDRED THIRTEENTH CONGRESS
FIRST SESSION
__________
WEDNESDAY, MARCH 13, 2013
__________
Serial No. 113-9
__________
Printed for the use of the Committee on Veterans' Affairs
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COMMITTEE ON VETERANS' AFFAIRS
JEFF MILLER, Florida, Chairman
DOUG LAMBORN, Colorado MICHAEL H. MICHAUD, Maine, Ranking
GUS M. BILIRAKIS, Florida Minority Member
DAVID P. ROE, Tennessee CORRINE BROWN, Florida
BILL FLORES, Texas MARK TAKANO, California
JEFF DENHAM, California JULIA BROWNLEY, California
JON RUNYAN, New Jersey DINA TITUS, Nevada
DAN BENISHEK, Michigan ANN KIRKPATRICK, Arizona
TIM HUELSKAMP, Kansas RAUL RUIZ, California
MARK E. AMODEI, Nevada GLORIA NEGRETE MCLEOD, California
MIKE COFFMAN, Colorado ANN M. KUSTER, New Hampshire
BRAD R. WENSTRUP, Ohio BETO O'ROURKE, Texas
PAUL COOK, California TIMOTHY J. WALZ, Minnesota
JACKIE WALORSKI, Indiana
Helen W. Tolar, Staff Director and Chief Counsel
______
SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS
MIKE COFFMAN, Colorado, Chairman
DOUG LAMBORN, Colorado ANN KIRKPATRICK, Arizona, Ranking
DAVID P. ROE, Tennessee Minority Member
TIM HUELSKAMP, Kansas MARK TAKANO, California
DAN BENISHEK, Michigan ANN M. KUSTER, New Hampshire
JACKIE WALORSKI, Indiana BETO O'ROURKE, Texas
TIMOTHY J. WALZ, Minnesota
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
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of converting between various electronic formats may introduce
unintentional errors or omissions. Such occurrences are inherent in the
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further refined.
C O N T E N T S
__________
March 13, 2013
Page
Gulf War: What Kind of Care Are Veterans Receiving 20 Years
Later?......................................................... 1
OPENING STATEMENTS
Hon. Mike Coffman, Chairman, Subcommittee on Oversight and
Investigations................................................. 1
Prepared Statement of Hon. Coffman........................... 25
Hon. Ann Kirkpatrick, Ranking Minority Member, Subcommittee on
Oversight and Investigations................................... 2
Prepared Statement of Hon. Kirkpatrick....................... 25
WITNESSES
Dr. Lea Steele, Research Professor of Biomedical Studies &
Director, Veterans Health Research Program, Baylor University.. 3
Prepared Statement of Dr. Steele............................. 26
Dr. Steven S. Coughlin, Adjunct Professor of Epidemiology, Emory
University..................................................... 6
Prepared Statement of Dr. Coughlin........................... 29
Dr. Bernard M. Rosof, Chairman, Board of Directors, Huntington
Hospital, Chair, Committee on Gulf War and Health: Treatment
for Chronic Multisymptom Illness, Institute of Medicine of the
National Academies............................................. 9
Prepared Statement of Dr. Rosof.............................. 31
Executive Summary of Dr. Rosof............................... 34
Anthony Hardie, Gulf War Veteran................................. 11
Prepared Statement of Mr. Hardie............................. 35
Dr. Victoria Davey, Chief Officer, Office of Public Health and
Environmental Hazards, Veterans Health Administration, U.S.
Department of Veterans Affairs................................. 18
Prepared Statement of Dr. Davey.............................. 44
Accompanied by:
Dr. Maureen McCarthy, Deputy Chief, Patient Care Services
Office, Veterans Health Administration, U.S. Department
of Veterans Affairs
Dr. Stephen Hunt, Director, Post-Deployment Integrated Care
Initiative, U.S. Department of Veterans Affairs
Dr. Gavin West, Acting Chief Medical Officer, Salt Lake
City VAMC, Special Assistant, Office of the Assistant
Deputy Under Secretary for Health for Clinical
Operations, U.S. Department of Veterans Affairs
Mr. Tom Murphy, Director of Compensation Service, Veterans
Benefits Administration, U.S. Department of Veterans
Affairs
STATEMENT FOR THE RECORD
Melissa A. Forsythe, Ph.D., RN, Program Manager For Gulf War
Illness Research Program, United States Army Medical Research
And Materiel Command........................................... 47
David K. Winnett, Jr., Gulf War Veteran.......................... 49
Chris Thomas, Gulf War Veteran................................... 51
Kirt Love, Gulf War Veteran...................................... 53
Dr. Beatrice Golomb, Professor of Medicine, Division of General
Internal Medicine, University of California, San Diego School
of Medicine.................................................... 55
QUESTIONS FOR THE RECORD
Letter From: Hon. Michael H. Michaud, Minority Ranking Member,
Committee on Veterans' Affairs, To: The Hon. Eric K. Shinseki,
Secretary, U.S. Department of Veterans Affairs................. 57
Questions From: Committee on Veterans' Affairs, To: U.S.
Department of Veterans Affairs................................. 57
Questions and Responses From: U.S. Department of Veterans
Affairs, To: Committee on Veterans' Affairs.................... 58
GULF WAR: WHAT KIND OF CARE ARE VETERANS RECEIVING 20 YEARS LATER?
Wednesday, March 13, 2013
U.S. House of Representatives,
Committee on Veterans' Affairs,
Subcommittee on Oversight and Investigations,
Washington, D.C.
The Subcommittee met, pursuant to notice, at 3:45 p.m., in
Room 334, Cannon House Office Building, Hon. Mike Coffman
[Chairman of the Subcommittee] presiding.
Present: Representatives Coffman and Kirkpatrick.
OPENING STATEMENT OF CHAIRMAN COFFMAN
Mr. Coffman. Good afternoon. I would like to welcome
everyone to today's hearing titled ``Gulf War: What Kind of
Care Are Veterans Receiving 20 Years Later?''
Yes, it has been over 20 years since the Gulf War. I
remember it very well, having been there myself as a Marine
Corps officer. Now, as Chairman of this Subcommittee, I am
asking the same questions many fellow Gulf War veterans have;
namely, how is this unique set of veterans being treated by the
VA?
While it may be pretty easy to determine whether a veteran
served in the Gulf War, it has been difficult for some time to
accurately identify what constitutes Gulf War Illness; however,
a lot of people, both in the veteran community and the medical
community, agree that it exists. In fact, VA's current Chief of
Staff John Gingrich once made the following comment about Gulf
War Illness: Quote, ``While commanding an artillery battalion
during Gulf War I, one of my soldiers suddenly became quite
ill. Despite the best efforts of our medical team, they could
not diagnose what made him so sick. Out of 800 soldiers under
my command, no one else was that sick. Now here we are almost
20 years later, and this veteran is still suffering and has
been since the war. I have watched him when he could barely
stand up, couldn't cross the room on his own. His legs were so
weak. He has been in and out of hospitals many times, seen by
some of the best doctors, and yet there is no explanation for
his debilitating illness. And this veteran is not alone,''
unquote.
Chronic Multisymptom Illness, or CMI, is by its own
definition not just one item that a VA physician can look for.
However, there are certain things a VA physician can and should
look for in determining whether a veteran likely has CMI that
can be attributed to service in the first Gulf War. This should
be a straightforward process; however, I am concerned that it
is not happening in practice.
This hearing today is not about whether Gulf War Illness
exists; this hearing is about how it is identified, diagnosed
and treated, and how the tools put in place to aid these
efforts have been used. For example, is the Gulf War Registry
working as intended and being used properly? If not, what is VA
doing to fix the problem, and what can this Committee do to
help VA in that effort?
Are the findings of the Research Advisory Committee being
put to use in identifying, diagnosing and treating those
veterans suffering from Gulf War Illness? If not, where is the
disconnect? How can this Committee help VA better assist these
veterans?
We have learned a lot in the last 20 years. Science and
research has identified unique medical issues for the veterans
of the Gulf War and established baselines from which we can
gain a better understanding of those unique issues. Gulf War
Illness has significant physical effects on the lives and well-
being of those veterans, and we need to make sure that VA can
and does make every effort to accurately identify, diagnose and
treat them in a timely fashion. To be sure, it should not take
another 20 years for us all to get this right.
I look forward to hearing from today's witnesses on what is
working in treating Gulf War Illness, where problems remain,
and how the entire process can be improved.
With that, I yield to Ranking Member Kirkpatrick for a
statement.
[The prepared statement of Chairman Coffman appears in the
Appendix]
OPENING STATEMENT OF HON. ANN KIRKPATRICK
Mrs. Kirkpatrick. Thank you, Mr. Chairman.
Because we know that the deployment experience of our
veterans is especially important in the world of research and
the care and treatment of injuries and illnesses, I want to
thank you for holding this hearing on Gulf War veterans and the
progress or not of recognizing and treating these veterans for
ill-defined and undiagnosed conditions.
It is estimated that up to 35 percent of veterans who have
served in the Gulf War suffer from symptoms that are not
readily identifiable or well understood. In the Institute of
Medicine's report released just this past January, and on which
this hearing is based, these conditions are called Chronic
Multisymptom Illness, or CMI.
Veterans from the 1991 Gulf War have struggled for more
than two decades to dispel the all-too-often accusation that
``it is all in your head.'' Veterans of the Iraq and
Afghanistan wars have recently presented to the Veterans Health
Administration with similar symptoms and have joined their
fellow veterans in the fight for effective treatments and
legitimate recognition of CMI by providers.
Keeping the struggle of this generation of veterans in the
forefront of this Subcommittee is not just important, but
crucial for us as a Nation to finally look at service in combat
not so narrowly as just that span of time served in combat, but
to look at the whole experience of a servicemember from the
perspective of predeployment, deployment and postdeployment as
the sum total of things that have happened to a servicemember.
Hopefully this hearing will provide us a better perspective
and a more holistic approach in understanding their unique
needs and the full toll that serving takes on everyone. In this
way we are better able to contribute to their healing and
readjustment.
I think it is incumbent upon us to learn as much as we can
about what our Nation is asking from our servicemembers and
families when they volunteer and raise their right hand. We
must recognize and be prepared to address the consequences of
that service and bring to bear our best efforts to ensure that
they are thoroughly prepared to serve, and, when they return
home, we commit to making them whole again.
Thank you, Mr. Chairman. I yield back.
[The prepared statement of Hon. Ann Kirkpatrick appears in
the Appendix]
Mr. Coffman. Thank you, Ranking Member Kirkpatrick.
I ask that all Members waive their opening remarks as per
this Committee's custom and invite the first panel to the
witness table.
On this panel we will hear from Dr. Lea Steele, Research
Professor of Biomedical Studies and Director of the Veterans
Health Research Program at Baylor University; Dr. Steven S.
Coughlin, Adjunct Professor of Epidemiology at Emory
University; Dr. Bernard M. Rosof, Chairman of the Board of
Directors at Huntington Hospital and Chair of the Committee on
Gulf War and Health: Treatment for Chronic Multisymptom Illness
of the National Academies; and, finally, from Mr. Anthony
Hardie, a Gulf War veteran himself.
All of your complete written statements will be made part
of the hearing record.
Dr. Steele, you are now recognized for 5 minutes.
STATEMENTS OF LEA STEELE, RESEARCH PROFESSOR OF BIOMEDICAL
STUDIES, AND DIRECTOR, VETERANS HEALTH RESEARCH PROGRAM, BAYLOR
UNIVERSITY; STEVEN S. COUGHLIN, ADJUNCT PROFESSOR OF
EPIDEMIOLOGY, EMORY UNIVERSITY; BERNARD M. ROSOF, CHAIRMAN,
BOARD OF DIRECTORS, HUNTINGTON HOSPITAL, AND CHAIR, COMMITTEE
ON GULF WAR AND HEALTH: TREATMENT FOR CHRONIC MULTISYMPTOM
ILLNESS, INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES; AND
ANTHONY HARDIE, GULF WAR VETERAN
STATEMENT OF LEA STEELE
Dr. Steele. Good afternoon. I am Lea Steele, Research
Professor of Biomedical Studies at Baylor, where I direct a
multidisciplinary research program on the health of Gulf War
veterans with scientists from across the country. I have also
served on several Federal committees that plan and advise
government agencies on Gulf War research, including the
Research Advisory Committee on Gulf War Veterans Illnesses,
which we commonly call the RAC.
I have been asked to testify on the work of Federal
agencies in addressing Gulf War Illness. By this we mean the
serious, often disabling symptom complex resulting from
military service in the 1991 Gulf War. I want to be clear, Gulf
War Illness refers to a characteristic profile of symptoms,
persistent cognitive and neurological problems, widespread
pain, respiratory and other concurrent symptoms that are not
explained by established medical or psychiatric diagnoses.
In recent years the government has made progress
understanding Gulf War Illness, but there remain serious
problems on a number of fronts at VA, including the need for
adequate health care for Gulf War veterans.
Twenty-two years after the war, we know Gulf War Illness is
not a stress-induced or psychiatric disorder. Rates of PTSD,
for example, were much lower in the 1991 Gulf War veterans than
in veterans from other wars, and studies consistently show that
Gulf War Illness is not due to war trauma or serving in combat.
Rather, studies identify links with a number of hazardous
exposures during the war, and there is no disagreement among
scientists working in this area that Gulf War Illness is a real
and serious problem affecting 25 to 33 percent of the nearly
700,000 veterans who served in that war. Further, few veterans
have recovered in the 22 years since the war, unfortunately.
This is an incredibly important time for Gulf War Illness
research. Scientific advances have provided important insights
into this problem, its causes and the biological processes that
drive veterans' symptoms. At the same time, results are
beginning to come in from treatment studies that show benefits
for veterans with Gulf War Illness, with more treatment
research in the pipeline and more results expected in the near
term. After so many years of waiting, there is finally some
hope for Gulf War veterans, hope that they will have answers
that are long overdue, and hope that treatments can be found
that meaningfully improve their health and their lives.
Those of us most involved in this research believe, based
on recent progress, that these successes are within sight. But
I regret to say that in some sectors within VA, there appears
to have been backward movement with actions that seem intended
to ignore the science and minimize this condition as a problem.
Fundamentally we have a situation where two Federal
agencies sponsor very different scientific programs, both
ostensibly to address Gulf War health issues. DoD's Gulf War
Research Program is managed by the Office of Congressionally
Directed Medical Research Programs, or CDMRP. This office has
made great strides in a short time with about $34 million in
funding over 5 years between 2006 and 2011. This program began
in 2006 by defining a mission, establishing priorities and
enlisting the input and guidance of experts in the field and
veteran stakeholders. This mission-oriented approach has
yielded impressive progress, and the proof is in the results.
The highest priority research for Gulf War Illness are
studies to identify effective treatments. Of the 50 projects
approved for CDMRP funding between 2006 and 2011, 18 are
treatment related, 11 clinical studies to assist treatments for
ill veterans, and additional research on treatments in animal
models of Gulf War Illness, a very impressive record.
In contrast to DoD's mission-oriented approach, VA has not
managed an effective program that achieves targeted priorities
for Gulf War veterans. Research programs at VA often run
counter to the advice of scientific experts. The proof, again,
is in the results. VA has reported spending over $120 million
for Gulf War research over the 10 years between 2002 and 2011.
This includes a total of just five human and animal projects
related to treatment for Gulf War Illness, two focused on
stress reduction.
So, what happened? The devil is often in the details, of
course, but there are two overarching themes. First, VA has
been slow to clearly and accurately acknowledge the Gulf War
Illness problem. VA continues to provide mixed signals and
vague or inaccurate representations concerning the reality and
the nature of Gulf War Illness. This generic representation of
the Gulf War Illness problem as a constellation of disparate
symptoms that overlap considerably with psychiatric disorders
provided the basis for the recent IOM report on treatments,
which others on the panel will be talking about. Unfortunately,
the misrepresentation of Gulf War Illness by VA was amplified
in this report, but we will hear more about that later.
There are many examples, large and small, of VA minimizing
the Gulf War Illness problem. It is unbelievable, for example,
that VA's current national study of Gulf War veterans conducted
in 2013 does not even assess Gulf War Illness symptoms. This is
the largest study of 1991 Gulf War veterans in the U.S. and
targets 30,000 veterans. It includes scores of questions in
many areas like psychological stress, substance abuse and
alternative medicine, but not the basic symptoms needed to
define Gulf War Illness by any case definition. This is a
wasteful and inexcusable missed opportunity at best and
something akin to scientific malpractice at worst.
Further, VA has never established an effective research
program to address priority Gulf War health issues. There are
two main reasons that I can talk about here, although many
countless examples might be provided.
First, VA's program has been scientifically ineffective.
Despite strong urging from scientific experts, VA did not begin
the process of developing a strategic plan for Gulf War
research until 20 years after the war. A comprehensive process
was finally undertaken in 2011 to develop such a plan with
nongovernment experts and stakeholders from multiple
institutions and offices, nine groups of at least six members
each working over many months to craft and review the plan.
The draft plan was largely approved by two expert
committees early in 2012, but in the next several months the
plan was extensively changed by VA internal editors, who
removed references to Gulf War Illness and substantially
altered the program developed to define and treat this problem.
The Federal Research Advisory Committee on which I serve had
long urged VA to develop a plan of this type, but last June,
the RAC withdrew its support of the plan and reported to the
Secretary that, under current circumstances, the Committee had
no confidence in VA's ability to develop an effective Gulf War
research program.
Just one final point briefly. The other major issue related
to VA's Gulf War research program relates to research funding.
The RAC was charged by Congress to review all Federal research
programs that address Gulf War health issues. Our Committee
staff review of Gulf War research expenditures each year
invariably finds that a large portion of VA-identified Gulf War
studies would not be considered Gulf War research by any other
government or nongovernment program.
This is not a trivial problem. In many years, 60 percent or
more of the millions of dollars identified for Gulf War
research is actually used for other types of research, with no
link in any important respect to 1991 Gulf War veterans. There
are far too many examples to identify here, but they include
high-dollar research items like the $10 million used to fund a
postmortem brain tissue bank, identified as the Gulf War Bio-
Repository Trust. In reality, this program is a brain bank for
veterans with ALS, or Lou Gehrig's disease. Despite its name
and the $10 million in Gulf War funding used for this program,
it neither targets nor studies veterans in any important way.
As of 2010, only 1 of the 60 contributors to this brain bank
was a Gulf War veteran.
So, as always, the proof is in the results. Together VA's
poor representation of the Gulf War Illness problem and failure
to apply current scientific knowledge to develop a focused
state-of-the-art research program have led to relatively little
in the way of tangible benefits for ill veterans. From my
perspective as a scientist who has worked in this area for many
years, it is time to get this right, and certainly the many
thousands of veterans who have suffered with Gulf War Illness
for more than 20 years would say it is long past time.
Thank you.
[The prepared statement of Dr. Lea Steele appears in the
Appendix]
Mr. Coffman. Thank you, Dr. Steele.
Dr. Coughlin.
STATEMENT OF STEVEN S. COUGHLIN
Mr. Coughlin. Chairman Coffman and Members of the
Subcommittee, distinguished guests, thank you for the privilege
of testifying today. I am Steve Coughlin. I have worked as an
epidemiologist for over 25 years, including positions as a
Senior Cancer Epidemiologist at the Centers for Disease Control
and Prevention, and as Associate Professor of Epidemiology and
Director of the Program in Public Health Ethics at Tulane
University. I chaired the writing group that prepared the
ethics guidelines for the American College of Epidemiology, and
have authored or edited several key texts on public health
ethics and ethics in epidemiology.
For the past 4-1/2 years, I was a Senior Epidemiologist in
the Office of Public Health at the Department of Veterans
Affairs. In December 2012, I resigned my position in the U.S.
Civil Service because of serious ethical concerns that I am
here to testify about today.
The Office of Public Health conducts large studies of the
health of American veterans; however, if the studies produce
results that do not support the Office of Public Health's
unwritten policy, they don't release them. This applies to data
regarding adverse health consequences of environmental
exposures, such as burn pits in Iraq and Afghanistan, and toxic
exposures in the Gulf War.
On the rare occasions when embarrassing study results are
released, data are manipulated to make them unintelligible. The
2009-2010 National Health Study of a New Generation of U.S.
Veterans targeted 60,000 OAF and OEF veterans and cost $10
million, not including the salaries of those who worked on it
and were employed by the VA. Twenty to thirty percent of these
veterans were also Gulf War-era veterans, and the study
produced data regarding their exposures to pesticides, oil well
fires, and pyridostigmine bromide pills. It also included
meticulously coded data as to what medications they were
taking.
The Office of Public Health has not released these data or
even disclosed the fact that this important information on Gulf
War veterans exists. Anything that supports the position that
Gulf War Illness is a neurological condition is unlikely to
ever be published.
I coauthored a journal article for publication on important
research findings from the New Generation study having to do
with the relationship between exposures to burn pits and other
inhalational hazards and asthma and bronchitis in OEF/OIF
veterans. My immediate supervisor, Dr. Aaron Schneiderman, told
me not to look at data regarding hospitalizations and doctors'
visits. The tabulated findings obscure rather than highlight
important associations. When I advised him I did not want to
continue as a coinvestigator under these circumstances, he
threatened me.
Speaking as a senior epidemiologist with almost 30 years of
research experience, there is no reason to work night and day
for years on a complex data collection effort which costs U.S.
taxpayers millions of dollars if you are not comfortable
putting your name on publications stemming from this study or
if no scientific publications are released.
Another example of important data that have never been
released are the results of the Gulf War Family Registry which
was mandated by Congress. These were physical examinations
provided at no charge to Gulf War veterans' family members. I
have been advised that these results have been permanently
lost.
The Office of Public Health has also manipulated
information regarding veterans' health through the questions
included in their surveys. During the preparation of a major
survey of Gulf War-era veterans of which I was principal
investigator, the Follow-up Study of a National Cohort of Gulf
War and Gulf War-era veterans, the Research Advisory Committee
on Gulf War Illness made extensive recommendations regarding
changes to the survey. I considered many of those changes as
very constructive, and some were adopted.
The VA Chief of Staff, Mr. John Gingrich, directed my
supervisors to send the Gulf War study scientific protocol and
draft questionnaire out for additional objective scientific
peer review. The OPH Chief Science Officer, Dr. Michael
Peterson, contacted a longtime friend of his, who is dean of a
U.S. school of public health. The dean identified a faculty
member at his school, although the individual has no background
in Gulf War health research.
My direct supervisor Dr. Schneiderman spoke with the peer
reviewer and told him that the Research Advisory Committee
comments were politically motivated; i.e., not objective in
nature. The reviewer responded that he would certainly try to
help out. Not surprisingly, the reviewer's comments were highly
favorable. The Chief of Staff Mr. Gingrich was never informed
that the outside reviewer worked for a friend of Dr. Peterson.
My supervisors also made false statements in writing to the
Chief of Staff. For example, they falsely stated that putting
the study on hold long enough to further revise the
questionnaire would cost the government $1 million, delay the
study for a year or longer, and potentially result in contract
default. None of that was true.
The contract for the study was specifically worded in a way
that the contractor was only paid for each deliverable as they
completed that piece of the work product. As a result, the
Chief of Staff ordered the survey to proceed without the
changes.
The Office of Public Health also handles the VA dealings
with the Institute of Medicine, which is part of the National
Academies of Science. Congress and VA leadership rely on the
IOM for authoritative objective information on medical science.
I have personally served on IOM committees and workshops having
to do with public health ethics.
Last year the Department of Veterans Affairs contracted
with IOM for a congressionally mandated study of treatments for
Chronic Multisymptom Illness in Gulf War veterans. Many Gulf
War veterans were distressed that five speakers selected to
brief the IOM committee presented the view that the illness may
be psychiatric, although science has long discredited that
position. My understanding is that Dr. Peterson identified the
speakers the IOM should invite.
I wish to close with a subject of particular importance to
me. Almost 2,000 research participants from the National Health
Study of a New Generation of U.S. Veterans self-reported that
they had thoughts in the previous 2 weeks that they would be
better off dead; however, only a small percentage of those
veterans, roughly 5 percent, ever received a callback from a
study clinician. Some of those veterans are now homeless or
deceased.
I was unsuccessful in getting senior Office of Public
Health officials to address this problem in the New Generation
study. I was successful in incorporating these callbacks in the
Gulf War survey, and they have saved lives, but only after my
supervisors threatened to remove me from the study and
attempted disciplinary action against me when I appealed their
refusal to provide for callbacks to a higher authority.
I urge this Committee to direct the VA to immediately
identify procedures to ensure that veterans who participate in
VA large-scale epidemiologic studies receive appropriate
follow-up care so that this tragedy is not repeated. I also
urge you to initiate legislation to cure the epidemic of
serious ethical problems in the Office of Public Health, I
described to you today.
In view of the pervasive pattern where some of these
officials failed to tell the truth even to VA leadership, VA
cannot be expected to reform itself. These problems impact the
balance of risks and benefits of federally funded human-
subjects research costing tens of millions of dollars and which
fail to serve the interests of the veterans they are intended
to benefit.
The VA mental health professionals who made callbacks for
the 2012 Gulf War follow-up survey, who are over at the VA
medical center here in D.C., saved lives and ameliorated human
suffering. They helped vulnerable research participants get
access to health care benefits to which they are entitled to by
acts of Congress.
When you are suffering from a neurologic condition such as
Gulf War Illness or traumatic brain injury, or a psychiatric
condition such as major depression or post-traumatic stress
disorder, it can be extremely difficult to navigate the
bureaucratic procedures for getting access to health care
benefits. That is why it is essential to have clinical
psychologists, licensed clinical social workers, and other
mental health professionals as coinvestigators on these large-
scale national surveys.
The quality of measures to assist research participants who
are experiencing pronounced psychological distress varies
widely across epidemiological studies conducted by the
Department of Veterans Affairs, studies that are targeting
hundreds of thousands of U.S. servicemen and women and U.S.
veterans. In some studies, such as the National Health Study
for a New Generation of U.S. Veterans, only a small percentage
or none of the research participants who self-report suicide
ideation receive a callback from a study clinician. This
practice is unethical and should be strongly discouraged.
[The prepared statement of Dr. Steven S. Coughlin appears
in the Appendix]
Mr. Coffman. I am going to have to try and remind the
witnesses to try and keep it to 5 minutes--you are at 10
minutes right now--because we are going to have to return to
vote in a little while, so we want to get through as much as we
possibly can.
Dr. Rosof.
STATEMENT OF BERNARD M. ROSOF
Dr. Rosof. Good afternoon, Mr. Chairman, Ranking Member
Kirkpatrick, and Members of the Subcommittee. My name is Bernie
Rosof. I am Chairman of the Board of Directors of Huntington
Hospital, part of the North Shore LIJ Health System in
Huntington, New York. I am a specialist in internal medicine
and gastroenterology, and professor of medicine at the Hofstra
North Shore-LIJ School of Medicine. I also served as chair of
the Institute of Medicine's Committee on Gulf War and Health:
Treatment for Chronic Multisymptom Illness.
The Institute of Medicine, or the IOM, as you know, is the
health arm of the National Academy of Sciences, an independent
nonprofit organization that provides unbiased and authoritative
advice to decision-makers and to the public. The IOM was asked
by the Department of Veterans Affairs to comprehensively
review, evaluate and summarize the scientific and medical
literature regarding treatments for Chronic Multisymptom
Illness, or, as you have heard, CMI, among Gulf War veterans.
The IOM assembled an expert committee of which I was chair
to address this task. We met in person five times over a 9-
month period to gather evidence, deliberate on our conclusions
and recommendations, and write our report. That report
underwent a rigorous, independent, external review before being
released in January of this year. More detailed information on
the committee's recommendations is included with my longer
written statement.
CMI is a very serious condition that imposes an enormous
burden of suffering on our Nation's veterans. It is a very
complex condition. Veterans who have CMI often have a
combination of physical symptoms and cognitive symptoms, along
with comorbid syndromes, such as chronic-fatigue syndrome,
fibromyalgia and irritable-bowel syndrome. Other clinical
entities such as depression and anxiety may occur as well.
There is no consensus among physicians, researchers and
others as to the cause of CMI. The range of unexplained
symptoms experienced by people who have CMI could result from
multiple factors, but the etiology remains unknown.
We didn't attempt to identify the causes of CMI. As laid
out in the charge, we evaluated treatments for CMI and made
recommendations for improving health care for veterans who have
this condition. We conducted an extensive systematic assessment
and review of the evidence on treatment for CMI. We also
assessed treatments for a number of related and comorbid
conditions to determine whether any of those treatments may be
beneficial for CMI.
Based on our assessment, we cannot recommend any specific
therapy as a treatment for veterans who have CMI. We concluded
that a one-size-fits-all approach is not effective for managing
these veterans. We recommend that the VA implement a
systemwide, integrated, multimodal, long-term management
approach.
In our report we make a number of additional
recommendations aimed at identifying veterans who have CMI,
bringing them into the VA health care system, and improving the
quality of their care. The VA should commit the necessary
resources to ensure that veterans complete a comprehensive
health examination immediately upon separation from active
duty. To improve coordination of care, the results should
become part of a veteran's health record and should be made
available to every clinician caring for the veteran, whether in
or outside the VA health care system. Additionally, the VA
should include in its electronic health record a pop-up screen
to prompt clinicians to ask questions to ascertain whether a
patient has symptoms consistent with CMI.
Once a veteran has been identified as having CMI and has
entered the VA health care system, the next step is to provide
comprehensive care for the veteran not only for CMI, but also
any comorbid conditions. Existing VA programs, such as post-
deployment patient-aligned care teams, or PACTs, could be
adapted to best serve veterans who have CMI. The VA should
commit the resources needed to ensure that PACTs have the time
and the skills required to meet the needs of veterans who have
CMI as specified in the veterans' integrated personal-care
plans; that the adequacy of time for clinical encounters is
measured routinely; and that clinical caseloads are adjusted in
response to the data.
A major determinant of the VA's ability to manage veterans
who have CMI is the training of clinicians and teams of
professionals in providing care for these patients. The VA
should designate CMI champions to serve as an internal resource
at each VA medical center. These individuals should be
integrated into the care system to ensure clear communication
and coordination among clinicians. The VA also should develop
peer networks to introduce new information, norms and skills
related to managing veterans who have CMI.
Finally, many studies on treatments for CMI reviewed by the
committee have methodological flaws. Therefore, future studies
funded and conducted by the VA to assess treatments for CMI
should adhere to well-accepted methodologic and reporting
guidelines for clinical trials. We can't emphasize that too
much.
We identified several interventions that may hold promise
for treatment of CMI. Although this is not an exhaustive list,
the VA should consider funding and conducting studies of
interventions, such as biofeedback, acupuncture, aerobic
exercise and multimodal therapies.
Numerous opportunities exist for the VA to improve and
expand its health care services of veterans who have CMI. Our
veterans deserve the very best health care.
Thank you very much for the opportunity to testify. I
certainly would be happy to answer any questions.
[The prepared statement of Dr. Bernard M. Rosof appears in
the Appendix]
Mr. Coffman. Thank you, Dr. Rosof.
Mr. Hardie for 5 minutes, please.
STATEMENT OF ANTHONY HARDIE
Mr. Hardie. Thank you for today's hearing, and thank you to
the Gulf War veterans who are here or watching from home or
from the hospital in the case of at least one. I myself am a
veteran of the 1991 Gulf War as well as Somalia and four other
deployments. I developed health issues that began in the gulf
that have plagued me ever since. My experiences are far from
unique, and we now know roughly one in three of us Gulf War
veterans are similarly afflicted.
In 2010, a landmark IOM report confirmed what we Gulf War
veterans already knew. Gulf War Illness is likely the result of
environmental agents plus other factors. It is not psychiatric,
and it is likely that treatments and preventions can be found.
Though such a renewed national effort has not yet fully
happened, special thanks to Congressmen Miller, Michaud, and
Roe and others for helping fund the Gulf War Illness CDMRP, the
only Federal research program in the last two decades aimed at
improving the health and lives of us ill Gulf War veterans.
I'll provide more detail in my written statement.
VA's past Gulf War research failures have previously been
well documented, much of it focused on stress, psychological
and other irrelevant issues, little of it aimed at developing
Gulf War Illness treatments. As we just heard Dr. Coughlin,
such failures have not been by accident. VA staff misdeeds
continued with the recent IOM Treatments Committee, and last
year, as we also have already heard, VA staff effectively
killed the first-of-its-kind strategic plan finally aimed at
improving the health and lives of veterans suffering from Gulf
War Illness. VA staff unilaterally whitewashed the plan.
Participants, including myself, felt betrayed in having wasted
a year and a half.
The Research Advisory Committee on which I serve
unanimously rejected VA's whitewash, declared no confidence in
VA's handling of Gulf War Illness research, and described even
more issues: secret VA cuts to the Gulf War Illness research
budget; VA staff misrepresentations to VA leadership and
Congress; blatant violation of statutory mandates; prioritizing
research not on treatments, but on, quote, ``whether Gulf War
veterans' illnesses are linked to Gulf War service.'' And the
RAC has not been allowed to hold a public meeting since then.
There are more issues with details in my written submission.
VA staff have initiated a process to create a new case
definition for Gulf War Illness via a literature review,
unprecedented, from what I am told, and in opposition to the
strategic plan mentioned earlier. VA staff refused to provide
the RAC with more information.
VA's medical surveillance of serious Gulf War health
outcomes remains broken. VA refuses to implement a 2008 law
mandating an MS prevalence study. VA is still not doing obvious
infectious disease workups, as exhibited by a recent Iraq War
veteran who after a 4-year battle was finally diagnosed and
treated with Q fever.
VA's Gulf War Task Force ignores--includes only VA staff.
It operates in secret, and it asks for, but ignores, veterans'
input. VA has failed to publish its quarterly Gulf War and OIF/
OEF newsletters and claims data reports since 2010. The VA
continues to exclude Gulf War veterans whose service was in
Turkey or Israel. VA continues to exclude from Gulf War
veterans' benefits Afghanistan war veterans, yet includes Iraq
War veterans.
VA still hasn't fixed rating problems for fibromyalgia and
chronic fatigue, with up to 100 percent ratings for one, but
only 40 percent ratings for both. Yes, you heard that right.
And these conditions are presumptive for Gulf War and Iraq
veterans, but not Afghanistan veterans. DoD and VA continue to
find no evidence for other serious military health issues like
burn pits, vaccination injuries and more.
VA staff routinely ignore Congress, the law and expert
advisers, wasting more precious years squandering experts' time
and energy, and further alienating not just the most engaged
advisers, but also the very Gulf War veterans they are supposed
to be helping.
Most importantly of all, VA still has no proven effective
treatments for Gulf War Illness patients who walk through VA's
doors, where they frequently are still thought to be
psychosomatic. VA has only Band-Aids for symptoms and to help
cope. Today we are hearing why.
I encourage this body to take--to help right these ongoing
wrongs, including comprehensive legislation to help force
solutions, reallocation of funding from these nonperforming
entities, further investigation of their misdeeds, and criminal
sanctions for such behavior.
We Gulf War veterans have been fighting with VA and DoD for
what is right for most of the last 22 long years. We have had
countless congressional hearings like this one on Gulf War
veterans' issues with more empty VA promises. We have seen laws
pass only to see VA staff circumvent them or ignore them with
impunity. I hope today's hearing will be different.
Thank you, Mr. Chairman, Madam Ranking Member, Members of
the Committee, and I am happy to answer any questions you may
have.
[The prepared statement of Anthony Hardie appears in the
Appendix]
Mr. Coffman. Thank you, Mr. Hardie, and thank you so much
for your service to our country.
Doctor--and if you all could do your best to keep your
questions down to a minimum in terms of time so we can get to
the second panel, and our Ranking Member has questions as well
as I do.
Dr. Coughlin, your written testimony stated that, quote,
``on the rare occasions when embarrassing study results are
released, data are manipulated to make them unintelligible,''
unquote. Please explain and cite an example.
Dr. Coughlin. Several examples can be cited. The best
example that comes to mind is we set out to analyze data from
the National Health Study for a New Generation of U.S. Veterans
looking at self-reported exposure to burn pits, oil well fire
smoke, other inhalational hazards, in relation to physician-
diagnosed asthma and bronchitis.
The initial exposure analyses, which were produced by the
writing group and the statistician, showed that a sizable
percentage of the deployed veterans had been exposed to burn
pit smoke, and burn pit fumes were associated with asthma and
bronchitis. Then in a later iteration of the tabulated results,
those results were set aside or discarded, and the focus was
instead on deployment, deployment status in relation to asthma
and bronchitis.
Well, those 30,000 deployed vets and 30,000 nondeployed
vets included veterans who served on ships in the Indian Ocean,
or in the Philippines, or in Germany in hospitals. In other
words, people were deployed OEF/OIF and served in the War on
Terror, but were never in Iraq or Afghanistan on the ground and
had no potential exposure to burn pits. So the way that the
refined results were tabulated, it obscured rather than
highlighted the associations of interest. And I could elaborate
if you would like.
Mr. Coffman. Okay. Mr. Hardie, can you explain in your
opinion why the Research Advisory Committee in their latest
Institute of Medicine report is flawed?
Mr. Hardie. Yes. Thank you for that question.
First I want to recognize that I believe that the
researchers, distinguished researchers like the gentleman
sitting next to me, who served on that committee were well
intentioned. However, VA staff issued a scope of work and
committee charge that radically diverged from the law, that
effectively prevented--and also effectively prevented what the
committee could consider. I believe that these helped to
prevent--prevented the IOM committee from meeting the
expectations of the law.
VA staff directed the panel to do a literature review
rather than, as the law directed, focusing on physicians
experienced in treating Gulf War Illness. VA staff knew little
such literature exists, because VA's two decades of failures to
develop treatments have helped to ensure that fact.
Additionally, most of the presenters to the panel focused
on psychosomatic issues, stress as cause and things like
relaxation therapies as treatments. Our Gulf War veterans who
called in to listen to that meeting were naturally outraged. VA
staff were among the presenters to the committee, including at
least one sitting here today. VA staff muddied the waters by
directing IOM to include not just 91 Gulf War veterans as the
law directs, but many others.
And finally, all of this involvement by VA staff is a far
cry from previous claims that these panels operate independent
of biasing influence from the contracting agency.
Mr. Coffman. Thank you, Mr. Hardie.
Dr. Rosof, the law required that VA's agreement with the
Institute of Medicine was to, quote, ``convene a group of
medical professionals who are experienced in treating
individuals who served,'' unquote, ``in the Southwest Asia
theater of operations of the Persian Gulf War during 1990 or
1991, and who have been diagnosed with Chronic Multisymptom
Illness or another health condition related to such service,''
unquote.
Of the members of your committee, how many have experience
in medically treating Gulf War veterans?
Dr. Rosof. Well, I can't answer as to the number of members
of my committee who had experience, but all of the members of
the committee had experience in dealing with Chronic
Multisymptom Illness, some directly with veterans who served in
those theaters of war.
In addition, there are members of the committee, including
myself, that have been on other IOM committees that have dealt
with the issues of Gulf War Chronic Multisymptom Illness or
illnesses of that sort. So there was considerable expertise
sitting around the table in addition to methodical expertise to
evaluate the literature on best treatments.
Mr. Coffman. Thank you.
Ranking Member Kirkpatrick.
Mrs. Kirkpatrick. Mr. Hardie, can you enlighten the
Committee on the role of the Research Advisory Committee on
Gulf War Illness in the preparation of a major survey of Gulf
War-era veterans that Dr. Coughlin was talking about in his
testimony? Were the recommendations that the Research Advisory
Committee made regarding the changes to the survey ignored, and
what has happened to the survey?
Mr. Hardie. Thank you very much for that question, Madam
Ranking Member.
The Research Advisory Committee made a number of
recommendations early on when the committee first became aware
that the survey existed. Many of those Office of Public Health
staff, including Dr. Aaron Schneiderman that was mentioned
earlier, refused to provide the Research Advisory Committee
with answers to whether or not that the requested changes had
been made. If any changes had been made, they refused even to
tell our chairman where his office was so the chairman could
come and have a private meeting with him.
I was frankly shocked, and candidly I expressed at that
meeting that I hadn't seen such a display of arrogance and
insolence, and that I thought that he should be fired. I was
absolutely shocked.
So my understanding when we finally saw the survey that
went out, the expert--I am simply a Gulf War veteran on the
panel that has had a lot of experience with these things, but I
look to many of the scientists that I find to be brilliant, and
experts in their field had put together a comprehensive survey
list and focusing on the important issues to veterans like Gulf
War--frankly, Gulf War Illness issues, and it did not appear
that those issues were being included in the survey. And when
we finally saw the survey, it was extremely troubling that much
of it was focused on psychological and psychiatric issues.
Frankly, it was extremely upsetting for Gulf War veterans.
Mrs. Kirkpatrick. Do you know where the survey is now?
Mr. Hardie. I think that others may be better suited to
answer that question.
Mrs. Kirkpatrick. Okay. Dr. Coughlin.
Mr. Coughlin. The Research Advisory Committee on Gulf War
Illness provided scientific critiques as part of the formal
Office of Management and Budget's regulatory process. We
published an announcement in the Federal Register as required
by OMB about this national data collection, and the public can
indeed provide written comments, which VA is obligated to
respond to.
The false statements and other ethical problems that I
mention in my testimony, those problems may well have
compromised the integrity of the OMB regulatory process. So I
just wanted to reinforce Mr. Hardie's comments.
Mrs. Kirkpatrick. Thank you.
This question is for the entire panel. What do you believe
are the top three challenges the VA faces in addressing the
inadequacy of the Gulf War veterans research programs and the
lack of effective treatment? So what are the three reasons,
challenges, that they are unable to address this?
Dr. Steele?
Ms. Steele. Yes, thank you. I briefly outlined that in my
testimony, and I can just summarize them very quickly.
The top reasons have to do with lack of expertise in this
area among the people who are designing and executing the
program. So it is almost as if they are designing a program
that is well suited to the mid-1990s, soon after the Gulf War,
when we didn't know anything about Gulf War Illness.
But a lot has changed since then. We have learned a lot,
and certainly there is a lot of scientific promise now and
scientific information now that could be built on to develop an
effective research program to address Gulf War Illness, as the
Department of Defense has done in recent years.
So is partially the lack of expertise. It almost appears to
be the lack of will, just in looking how Gulf War Illness is
typically portrayed on VA Web sites and VA literature, how the
studies appear to be designed to actually ignore Gulf War
Illness for the most part, or minimize it as an important
problem. So some of it probably has to do with political will,
and some of it has to do with expertise.
But I would also say that just the use of funding is
totally inappropriate. So much of the funding is used for
studies that have nothing to do with Gulf War veterans or Gulf
War Illness.
So, you know, it is sort of a three-pronged problem; lack
of expertise, lack of intention to address the problem and
misallocation of funds.
Mrs. Kirkpatrick. Thank you, Doctor.
And, Mr. Chairman, I have almost used up my time, so I will
yield back.
Mr. Coffman. Thank you, Ranking Member Kirkpatrick.
Dr. Rosof, on the monitors in this room, there are slides
from five presentations from different speakers who appeared
before your committee on February 29th of last year. As you can
see, these speakers appear to be giving the committee the
message that this illness is psychiatric, stress, PTSD and so
forth.
Who selected these speakers to present to the committee?
Dr. Rosof. Let me correct some of the statements that were
made initially. The selection of the speakers to the committee
was done by our committee. It was not done, as indicated
previously, by Dr. Peterson or any other individual. It was
selected by our committee.
The committee wanted to better understand the treatment
modalities that would affect positively the veterans and their
health. We reviewed, identified--
Mr. Coffman. Excuse me 1 second. Did VA or DoD have any
input into the choice of these speakers?
Dr. Rosof. The committee made the decision on what speakers
to choose, clear understanding on the part of the committee. We
reviewed in addition 6,541 unique references, enabling us to
make some decisions about the treatment of veterans. So our
conclusions were not based solely on the people who you saw; in
addition, there were others. And if you read--if our report is
read clearly, you can see our conclusions were not that this
was a psychological or psychosomatic disorder.
We clearly make the statement we do not know the etiology.
No one treatment will be able to affect positively the
treatment for patients with CMI, Chronic Multisymptom Illness.
It requires a group of physicians, a team-based approach, who
understand the patients, who enable the patient to have a
decision in the care he or she receives, and at the same time
better understand the satisfaction of the veterans in their
care. We strongly believe that this is an illness that has and
requires a multimodal therapeutic intervention.
Mr. Coffman. All right. Dr. Coughlin, on October 23rd this
Subcommittee asked VA how many veterans have self-identified as
suicidal and later committed suicide in the Follow-up Study of
a National Cohort of Gulf War and Gulf-era veterans. On
February 19th, VA responded stating, quote, ``VA has no
evidence to date that any veteran in this study has committed
suicide,'' unquote. Are these the same results you saw in your
study?
Mr. Coughlin. Yes. Fortunately, we did not lose any of the
research participants. As I mentioned in my testimony, my
efforts to identify mental health professionals to get involved
with the study as coinvestigators, to place these callbacks to
vulnerable research participants were initially blocked by my
supervisors, and that is why I contacted the IRB chair in
writing and also the VA Office of Inspector General.
After a delay of 2 or 3 months, we were able to start the
callback process, and a team of mental health professionals at
the Washington, D.C., VA Medical Center did a fantastic job of
reaching out to the veterans.
We had vets who had been told by their local VA clinic or
hospital that they were not eligible for free health care, but
when they called the toll-free number and reached somebody in
VBA and the VA central office, they were told the opposite. So
the social workers were able to sort this out and get them into
health care.
These were vulnerable veterans, men and women, who had
major depression or other medical and psychiatric conditions,
and they needed assistance to get into health care to save
their lives.
Mr. Coffman. Thank you.
Ranking Member Kirkpatrick, any other questions before we
go to the next panel?
Mrs. Kirkpatrick. Any other questions I'll submit in
writing in the interest of time.
[The information appears in the Appendix]
Mr. Coffman. Very well. Thank you very much for your
testimony.
I now invite the second panel to the witness table. On this
panel we will hear from Dr. Victoria Davey, Chief Officer of
VHA's Office of Public Health and Environment Hazards. Dr.
Davey is accompanied by Dr. Maureen McCarthy, Deputy Chief of
VHA's Patient Care Services Office; Dr. Stephen Hunt, Director
of VA's Post-Deployment Integrated Care Initiative; Dr. Gavin
West, Acting Chief Medical Officer of the Salt Lake City VAMC
and Special Assistant in the Office of the Assistant Deputy
Under Secretary for Health for Clinical Operations; and Mr. Tom
Murphy, Director of VBA's Compensation Service.
Dr. Davey, your complete written statement will be made
part of the hearing record. You are now recognized for 5
minutes.
STATEMENT OF VICTORIA DAVEY, CHIEF OFFICER, OFFICE OF PUBLIC
HEALTH AND ENVIRONMENTAL HAZARDS, VETERANS HEALTH
ADMINISTRATION, U.S. DEPARTMENT OF VETERANS AFFAIRS,
ACCOMPANIED BY MAUREEN MCCARTHY, DEPUTY CHIEF, PATIENT CARE
SERVICES OFFICE, VETERANS HEALTH ADMINISTRATION, U.S.
DEPARTMENT OF VETERANS AFFAIRS; STEPHEN HUNT, DIRECTOR, POST-
DEPLOYMENT INTEGRATED CARE INITIATIVE, U.S. DEPARTMENT OF
VETERANS AFFAIRS; GAVIN WEST, ACTING CHIEF MEDICAL OFFICER,
SALT LAKE CITY VAMC, SPECIAL ASSISTANT, OFFICE OF THE ASSISTANT
DEPUTY UNDER SECRETARY FOR HEALTH FOR CLINICAL OPERATIONS, U.S.
DEPARTMENT OF VETERANS AFFAIRS; AND TOM MURPHY, DIRECTOR OF
COMPENSATION SERVICE, VETERANS BENEFITS ADMINISTRATION, U.S.
DEPARTMENT OF VETERANS AFFAIRS
STATEMENT OF VICTORIA DAVEY
Ms. Davey. Mr. Chairman, Madam Ranking Member and Members
of the Subcommittee, thank you for the opportunity to submit my
written testimony for the record.
I am accompanied today by Dr. Stephen Hunt, who flew
overnight to be here today because he didn't want to cancel his
clinic appointments yesterday; Dr. Maureen McCarthy; and Dr.
Gavin West; as well as Mr. Tom Murphy. The three physicians I
just referenced have extensive experience treating Gulf War
veterans.
Mr. Chairman, this is our message: VA has learned a great
deal about identifying, diagnosing and treating Gulf War
veterans over the past 22 years. We will continue to improve
our abilities to provide world-class health care for Gulf War
veterans, better educate our health care providers, and
possibly most of all, in reference to the speakers that
preceded me, expand the evidence base for the treatments we
provide for these veterans, indeed for all veterans.
Let me provide you with a summary of where we are. We agree
with Dr. Steele. As you know, a debilitating cluster of
medically unexplained symptoms affects many Gulf War veterans.
We refer to the illness that these veterans have as Chronic
Multisymptom Illness, or CMI. Our present thinking is that a
complex combination of environmental exposures and individual
genetic characteristics may be behind this illness.
Veterans with CMI, like all veterans enrolled for VA care,
receive personalized, proactive, patient-driven care. In
addition, VA offers a number of programs and services uniquely
designed to meet the needs of Gulf War veterans with CMI.
VA links our patient-aligned care teams, or PACT teams,
working with Gulf War veterans with specialty-care capability
that focuses on treating the unique health requirements of
these veterans. The program includes teaching aids, referral
networks and other types of collaboration. Frontline clinicians
have been educated through our monthly community of practice
conference calls, informational messages, pocket cards and Web
sites.
Another program specifically for Gulf War veterans is our
registry program, which offers a health examination at any of
our health care facilities to any veteran with Gulf War
service. To date, about 130,000 Gulf War veterans have
undergone a registry exam. The comprehensive health exam
includes an exposure and medical history, laboratory tests and
a physical exam. VA health professionals discuss the results
face to face with veterans. This provides us an opportunity to
partner with the veteran to develop an individualized care
plan. An individual is very important to this discussion.
Since 2001, the War-Related Illness and Injury Study
Centers of the VA Office of Public Health, known as the WRIISC,
have supported specialized care for Gulf War veterans and
conducted cutting-edge research, clinical education and a
veteran referral program. VA's three WRIISCs have teams of
clinicians ready to evaluate Gulf War veterans with deployment-
related concerns. Based on a comprehensive evaluation, the
WRIISC team develops an individual, holistic treatment plan for
veterans with CMI or other ill-defined conditions through our
referral process based on geographic location.
VA's Office of Public Health holds quarterly conference
calls with environmental health coordinators and clinicians
throughout VA. The calls provide coordinators and clinicians
with ongoing training, and allows them to share patient
questions, challenges, administrative issues and solutions that
have come up at their facilities.
VA recently engaged the Institute of Medicine, as you
heard, to convene a committee to comprehensively review,
evaluate and summarize the available scientific and medical
literature regarding the best treatments for CMI among Gulf War
veterans. The report, as you heard, was released on January
23rd.
IOM made recommendations to VA in five categories,
including how to treat CMI, how to improve systems of care and
management of care, how to provide information about care,
improve the collection and quality of data on care outcomes and
satisfaction with care, and how to conduct future research. VA
is already taking actions, and these include a program to
provide every servicemember with a health care assessment upon
separation from service; improvements in systems of care and
management of CMI in Gulf War veterans, including the use of
clinical reminders and streamlined consults for specialty care;
and the innovative PACT program I described earlier that
integrates and coordinates personalized care for Gulf War
veterans.
We are improving communication among VA health providers
and between them and the patients they care for. We are
modifying our patient satisfaction measurement tools and
training our staff to better recognize CMI. We are also
developing a champions program and Webinars on this subject and
taking steps to strengthen our research protocols.
Mr. Chairman, we appreciate the opportunity to discuss with
you this important issue. We are proud to continue evaluation
and treatment for the 700,000 deserving men and women who
served in Operations Desert Shield and Desert Storm.
My colleagues and I are prepared to answer your questions.
Thank you.
[The prepared statement of Dr. Victoria Davey appears in
the Appendix]
Mr. Coffman. Thank you, Dr. Davey.
Is Gulf War Illness a psychological condition?
Ms. Davey. Gulf War Illness is not a psychologic condition.
Gulf War Illness is a group of chronic multisymptom--multiple
symptoms. We do not believe that it is psychological.
Mr. Coffman. Dr. Hunt, I understand you made a presentation
to the IOM Treatment Committee on the topic, quote, ``VA
Approaches to the Management of Chronic Multisymptom Illness in
Gulf War I Veterans,'' unquote.
The slide you presented to the committee shows that some VA
doctors think Gulf War Illness is, quote, ``mostly a physical
disorder,'' unquote, and some think it is, quote, ``mostly a
mental disorder,'' unquote. However, this information is from
an 11-year-old paper.
The current VA treatment guidelines revised in 2011 state,
quote, that ``chronic multisymptom illness is real and cannot
be reliably ascribed to any known psychiatric disorder,''
unquote.
I understand that you served on the committee that wrote
the new guidelines, Dr. Hunt, but you didn't present the new
guidelines to the committee.
In speaking on VA Approaches to the Management of Chronic
Multisymptom Illness in Gulf War I Veterans, why did you tell
the committee the 11-year-old information that it might be
physical or it might be mental, but didn't tell the committee
VA's current guideline that clearly states it is not mental?
Dr. Hunt. Actually, thank you, Mr. Chairman, and thanks for
the opportunity to be here. And I want to also acknowledge the
service of all of our veterans here, and particularly our Gulf
War veterans.
This slide was used to illustrate when Gulf War veterans
first started coming back. The psychologist and I who ended up
starting the first Gulf War veterans clinic at VA Puget Sound
were noticing that people were coming in with a lot of
symptoms, a lot of physical symptoms of different sorts that we
would do lots of tests for, and we couldn't find a disease to
link up to the symptom. And so we knew we were facing something
that ultimately now we are calling Chronic Multisymptom
Illness. At that time we were describing it as medically
unexplained symptoms.
We knew that we needed a new model of care, and the way
that we sort of established that was by doing a survey of
providers at that time when people were early on in the process
of coming back.
And so we asked the medical providers, do you think this
Gulf War Illness is more of a physical condition or more of a
mental health condition? The medical--and we asked mental
health providers, do you think it is more of a physical
condition or mental health condition? These are providers at VA
Puget Sound, VA Portland and Walter Reed. These are good
clinicians, smart clinicians that know what they are doing.
What this showed to me, and the point that I was trying to
make was, our paradigm wasn't working, because our medical
provider said, gosh, I am doing these tests, and they are all
negative, so I can't find a disease here, so maybe we should
have them checked out by behavioral health.
Behavioral health people would look at them and say, gosh,
there is all these symptoms, you know, but they don't really
meet criteria for any mental health diagnosis. I--they have
some condition. I think we should send them back to their
medical provider for more tests.
This is the dilemma of Chronic Multisymptom Illness, and
this is why we really appreciate the work that IOM has done in
framing this thing for us in a bigger way, because our old
paradigm, is it physical or is it mental, does not work.
We needed a paradigm where we said, look, you have been off
to war, your health has been changed in a number of ways, we
appreciate your service, we are glad you are here, and the way
that we are going to address this is by having a medical
provider, a mental health provider, social worker kind of put
your care together in a way that--
Mr. Coffman. Dr. Hunt, did you think it is a mental
condition or a physical condition?
Dr. Hunt. I think it is a health condition, and I don't
think in mental health, physical health--
Mr. Coffman. Is it mental, or is it physical?
Dr. Hunt. It is a physical condition, and it has--our minds
and bodies can't be split up in that way. I certainly would not
say it is a mental condition or a psychological condition for
sure. It is a health condition that we need to be very
circumspect in our way of evaluating and treating.
Mr. Coffman. Dr. Davey, the law required the VA's agreement
with the Institute of Medicine was to, quote, ``convene a group
of medical professionals who are experienced in treating
individuals who served,'' unquote, ``in the southeast Asia
theater of operations of the Persian or Gulf War during 1990
and 1991,'' unquote. But in looking at the statement of work,
VA tasked IOM to, quote, ``review, evaluate, and summarize the
available scientific and medical literature regarding the best
treatments for Chronic Multisymptom Illness among Gulf War
veterans,'' unquote.
Why did VA change the methodology of the congressionally
mandated study?
Ms. Davey. In our statement of work, we asked the IOM to
convene a group of medical professions, that is absolutely
right, and to do the work around the kernel of the existing
research.
Inherent in that, certainly intended, was that those
medical professionals would bring their clinical research
expertise to the table. And, as we know, experience and
clinical experience in particular is one form of knowledge that
we know, as is knowledge from research studies. We expected
that those professionals would have discussions based on their
experience as well as the research.
Mr. Coffman. And why wasn't--why weren't the findings of
this research published for peer review purposes?
Ms. Davey. You may be referring to Dr. Coughlin's comments
about some of our research in the Office of Public Health, the
large epidemiologic studies. When you do a study such as a
survey with scores of questions, you collect much data, and you
prioritize in an analysis plan which analyses are going to take
place first. Those analyses do take place in order, and we do
carry them out.
Mr. Coffman. Why does it appear that there has been a
misappropriation of funds appropriated for the purpose of
research for Gulf War Illness that seems to be diverted for
other purposes?
Ms. Davey. Mr. Chairman, that is a question for my research
colleagues, and I would like to take that one for the record.
We were not prepared here to talk about research funding.
[The attachment appears in the Appendix]
Mr. Coffman. Very well. Ranking Member Kirkpatrick.
Mrs. Kirkpatrick. Dr. Davey, in your testimony you state
that the VA is now in the process of developing additional
innovative training resources, such as mobile devices and
Internet applications. After 22 years this seems a bit late to
just now be developing applications for the environmental
exposure symptoms and conditions. So when did this process
begin, and when do you think you will be able to roll it out to
veterans so that it might be helpful?
Ms. Davey. Well, to speak to your larger question, the care
and treatment that we have learned, and we are experts in the
care of veterans, have taken place over the course of 22 years
because that is what time it takes. We have to understand what
we are dealing with, and it has taken that amount of time.
With regard to the specific innovative tools, obviously
since the technology has been available, but let me refer to
Dr. West, who is developing one of the Internet applications or
the mobile app--
Mrs. Kirkpatrick. Please, Dr. West.
Ms. Davey.--comment more.
Dr. West. Well, thank you so much. I am actually a primary
care physician and a general internist by trade, and I am proud
to say that every day I take care of Gulf War veterans and all
veterans, and it is really my privilege.
To answer that question directly, we have already developed
a lot of these tools. In fact, in your packet you have one of
them, the pocket card--I don't know if you guys have looked at
it--which has essentially a lot of what Dr. Steele was talking
about, a lot of the exposure concerns, a lot of the public
health Web sites, Webinars, and training modules that have been
developed through Office of Public Health and through VHA, you
know, as a whole.
As far as getting that onto a mobile app, that is in the
process. Otherwise we have talked a little bit about the IOM
pop-ups and clinical reminders for physicians, which is another
computer-based application. We have already developed a type of
pop-up called a clinical reminder that helps physicians, A,
understand where their veterans are coming from, their service;
second, actually goes through the chronic multisystem illness
and lays that out in a way that they can kind of follow a
simple screen, answer questions, and better adequately answer
the veterans' questions.
I mean, that is a key. I mean, these tools are really
important to train providers, to get them out on the
frontlines. Again, I see patients every day in clinic.
Mrs. Kirkpatrick. And let me just interrupt quickly. I
understand that, but my concern is how do we communicate to
veterans so that they may get the resources they need? And the
mobile apps, I know, are in the process, but do you have a
timeline for when you are going to roll that out, when that is
actually going to be available to veterans so they can learn
about it?
Dr. West. I don't have an exact timeline for the veterans
communication app, so I would have to take that back for the
record.
[The attachment appears in the Appendix]
Mrs. Kirkpatrick. Okay. Could you get back to me on that. I
think it is--
Dr. West. Absolutely.
Mrs. Kirkpatrick.--essential.
One of the things that I realize, it seems like the VA is
always a little behind on this, and it has been 22 years, and
so, I really would like to have some benchmarks, some
timetables so that we can report to our veterans that we are
moving forward with this.
And, Mr. Chairman, in the interest of time, I am going to
yield back. I know we are going to have votes here in just a
second.
Mr. Coffman. Mr. Murphy, in a recent request for
information, VA responded to this Committee that they could not
provide the total number of Gulf War-era veterans who were in
receipt of service-connected disability benefits for CMI,
because VBA does not have a diagnostic code to identify only
CMI-related claims, and it could not be separated from other
undiagnosed illnesses.
Other than CMI, what other undiagnosed illnesses does VA
award service-connected benefits for?
Mr. Murphy. Mr. Chairman, I don't have the answer to that
question, but I can tell you that they are covered under a
group of undiagnosed illnesses, which makes it very difficult
without literally sitting down and going through file page by
page, veteran by veteran to come in.
Mr. Coffman. I think the question is, is what other
undiagnosed illnesses are there that benefits are awarded for
other than CMI?
Mr. Murphy. That is one I have to take for the record. I
don't have an answer for that.
Mr. Coffman. You don't know?
Mr. Murphy. No, sir, I do not.
Mr. Coffman. Okay. I want that information.
Mr. Murphy. Yes, sir.
[The attachment appears in the Appendix]
Mr. Coffman. If you are awarded service--if you are
awarding service-connection for other undiagnosed illnesses,
then why does 38 CFR 3.317, referring to the statute or
regulation, the only regulation which explicitly mentions
undiagnosed illness in CMI, and it, in fact, is labeled, quote,
``compensation for disability due to undiagnosed illness and
medically unexplained Chronic Multisymptom Illness,'' unquote,
specifically state that it applies to Persian Gulf veterans,
defining both that phrase and the phrase, quote, ``Southwest
Asia theater of operations,'' unquote, within the regulation?
Mr. Murphy. I don't understand the question, Mr. Chairman.
Mr. Coffman. Why don't we take that one for the record?
Mr. Murphy. Okay.
[The attachment appears in the Appendix]
Mr. Coffman. Why doesn't VA have a specific diagnostic code
to evaluate CMI? Is this something that is being looked into as
part of the current rating schedule revision that is taking
place?
Mr. Murphy. Yes, absolutely. Under the rewrite project,
this is absolutely being considered as a change, because the
entire volume, in its entirety, is under rewrite.
Dr. Hunt. Mr. Chairman, there has kind of been a shift
because the IOM report really has characterized this thing
using the term and a kind of the nomenclature ``Chronic
Multisymptom Illness.'' Up until this point we have been using
different nomenclature, ``medically unexplained or undiagnosed
illnesses.'' It is the same symptoms, and it is almost any
physical symptom a person can have that a person can get
service-connected for, a Gulf War veteran.
It is just that now we are calling it Chronic Multisymptom
Illness, and there is some debate about how do we create a case
definition for exactly what that means. Originally we said
fatigue, idiopathic pain, and cognitive disturbances. Those are
the three main ones. But then we started seeing bowel symptoms,
we started seeing other neurological symptoms. So then we said
really any symptoms a person has, and now we are--it is a new
kind of characterization of it. It is not a new term, but now
we are saying, look, we are going to--this is Chronic
Multisymptom Illness; this is the way we get our arms around it
and really start treating it more effectively.
Mr. Coffman. Ranking Member Kirkpatrick, any final
questions or comments?
Mrs. Kirkpatrick. No.
Mr. Coffman. Thank you all. I want to thank you all for
testifying, both panels for testifying today. I want to say as
a Gulf War veteran, I find the conduct of the Veterans
Administration embarrassing on this issue in terms of their
treatment of veterans.
I have to ask you, is anybody a Gulf War veteran that is on
this panel right now?
You know, I think if there were--if there was one or if
there were Gulf War veterans in senior positions in the
Veterans Administration, I don't think we would be here today.
[Whereupon, at 5:01 p.m., the Subcommittee was adjourned.]
A P P E N D I X
----------
Prepared Statement of Hon. Mike Coffman, Chairman
Good afternoon. I'd like to welcome everyone to today's hearing
titled ``Gulf War: What Kind of Care are Veterans Receiving 20 Years
Later?''
Yes, it has been over 20 years since the Gulf War. I remember it
very well, having been there myself as a Marine. Now, as Chairman of
this subcommittee, I am asking the same questions many fellow Gulf War
veterans have- namely, how is this unique set of veterans being treated
by VA?
While it may be pretty easy to determine whether a veteran served
in the Gulf War, it has been difficult for some time to accurately
identify what constitutes ``Gulf War Illness.'' However, a lot of
people, both in the veteran community and the medical community, agree
that it exists. In fact, VA's current Chief of Staff, John Gingrich,
once made the following comment about Gulf War Illness:
``While commanding an artillery battalion during Gulf War I, one of
my soldiers suddenly became quite ill. Despite the best efforts of our
medical team, they could not diagnose what made him so sick. Out of 800
solider is [sic] under my command, no one else was that sick. Now here
we are, almost 20 years later and this Veteran is still suffering- and
has been since the war. I have watched him when he could barely stand
up, couldn't cross the room on his own, his legs were so weak. He has
been in and out of hospitals many times, seen by some of the best
doctors and yet there is still no explanation for his debilitating
illness . . . and this Veteran is not alone.``
Chronic, multisymptom illness, or ``CMI'', is by its own definition
not just one item that a VA physician can look for. However, there are
certain things a VA physician can and should look for, and determining
whether a veteran likely has CMI that can be attributed to service in
the first Gulf War should be a straightforward process. However, I'm
concerned that is not what is happening in practice.
This hearing today is not about whether Gulf War Illness exists;
this hearing is about how it is identified, diagnosed, and treated, and
how the tools put in place to aid these efforts have been used. For
example, is the Gulf War Registry working as intended and being used
properly? If not, what is VA doing to fix the problem, and what can
this Committee do to help VA in that effort?
Are the findings of the Research Advisory Committee being put to
use in identifying, diagnosing, and treating those veterans suffering
from Gulf War Illness? If not, where is the disconnect? How can this
Committee help VA better assist these veterans?
We have learned a lot in the last twenty years. Science and
research has identified unique medical issues for the veterans of the
Gulf War, and established baselines from which we can gain a better
understanding of those unique issues. Gulf War Illness has significant
physical effects on the lives and well-beings of those veterans, and we
need to make sure that VA can and does make every effort to accurately
identify, diagnose, and treat them in a timely fashion. To be sure, it
should not take another 20 years for us all to get this right.
I look forward to hearing from today's witnesses on what is working
in treating Gulf War Illness, where problems remain, and how the entire
process can be improved.
With that, I yield to Ranking Member Kirkpatrick for a statement.
Prepared Statement of Hon. Ann Kirkpatrick
Thank you Mr. Chairman.
Because we know that the deployment experience of our veterans is
especially important in the world of research, and the care and
treatment of injuries and illnesses, I want to thank you for holding
this hearing on Gulf War veterans and the progress or not, of
recognizing and treating these veterans, for ill defined and
undiagnosed conditions.
It is estimated that up to 35 percent of veterans who have served
in the Gulf War suffer from symptoms that are not readily identifiable
or well understood.
In the Institute of Medicine's report released just this past
January and on which this hearing is based, these conditions are called
Chronic Multisymptom Illness or CMI.
Veterans from the 1991 Gulf War have struggled for more than two
decades to dispel the all too often accusation that ``it is all in your
head''.
Veterans of the Iraq and Afghanistan wars have recently presented
to the Veterans Health Administration with similar symptoms and have
joined their fellow veterans in the fight for effective treatments and
legitimate recognition of CMI by providers.
Keeping the struggle of this generation of veterans in the
forefront of this Subcommittee is not just important, but crucial for
us, as a Nation, to finally look at service in combat not so narrowly
as just that span of time served in combat, but to look at the whole
experience of the servicemember from the perspective of pre deployment,
deployment and post deployment as the sum total of the things that have
happened to a servicemember.
Hopefully this hearing will provide us a better perspective and a
more holistic approach in understanding their unique needs and the full
toll that serving takes on everyone. In this way, we are better able to
contribute to their healing and readjustment.
I think it is incumbent upon as to learn as much as we can about
what our Nation is asking of our servicemembers and families when they
volunteer to raise their right hand.
We must recognize and be prepared to address the consequences of
that service and bring to bear our best efforts to ensure that they are
thoroughly prepared to serve and when they return home we commit to
making them whole again.
Prepared Statement of Lea Steele, Ph.D.
Thank you for inviting my testimony today. My name is Dr. Lea
Steele. I'm an epidemiologist and have been involved in research on the
health of 1991 Gulf War veterans since 1998, when I directed a Gulf War
research program sponsored by the State of Kansas. Since that time,
I've also served on a number of federal committees charged with
planning, reviewing, and advising government agencies on Gulf War
research. This includes appointment to the Congressionally-mandated
Research Advisory Committee on Gulf War Veterans' Illnesses (RAC), and
the privilege of serving as the Committee's Scientific Director from
2003 - 2008. I am currently Research Professor of Biomedical Studies at
Baylor University, where I direct a multifaceted research program on
the health of Gulf War veterans, in collaboration with scientists
across the United States.
I've been asked today to provide information on the effectiveness
of federal agencies in addressing health issues that affect veterans of
the 1990-1991 Gulf War. The most prominent and widespread health
problem from that war, as you know, is the condition commonly known as
Gulf War illness. There are also other health issues of concern, but
due to time constraints, my comments today will focus on this signature
health problem. We use the term Gulf War illness to refer to the
serious, often disabling symptom complex associated with military
service in the 1990-1991 Gulf War. I want to be clear: by Gulf War
illness, we mean a characteristic profile of symptoms--persistent
memory, cognitive, and other neurological problems, widespread pain,
disabling fatigue, digestive abnormalities, respiratory difficulties--
concurrent symptoms that are not explained by established medical or
psychiatric diagnoses.
Now, 22 years after the war, this pattern of chronic symptoms has
been well documented in 1991 veterans from across the U.S. and other
Coalition countries. We also know, from consistent research findings,
that Gulf War illness is not a stress-induced or psychiatric disorder.
Rates of stress and trauma-induced disorders like PTSD were much lower
in Gulf War veterans than in other wars, and studies consistently find
no association between war trauma or serving in combat, and rates of
Gulf War illness. But studies do identify links between Gulf War
illness and a number of hazardous exposures encountered by military
personnel in theater. I should point out that today, March 13, 2013, is
22 years, almost to the day, since U.S. ground troops were exposed to
low levels of chemical nerve agents following demolitions at a massive
Iraqi munitions depot near Khamisiyah, Iraq, in the weeks after the
February 28 cease fire. The Pentagon estimates that about 100,000 U.S.
troops located downwind were potentially exposed to low levels of nerve
agents--sarin and cyclosarin gas--as a result.
Nerve agents are just one of a number of Gulf War-related toxicants
identified as potential causes or contributors to the Gulf War illness
problem. Regardless of its cause, however, there is no disagreement
among scientists who have studied this issue that Gulf War illness is a
real and serious problem for the many thousands of affected veterans.
How many? Studies indicate between one fourth and one third of the
nearly 700,000 veterans who served in the 1991 Gulf War developed Gulf
War illness. Studies also show that few veterans have recovered, or
even substantially improved, in the 22 years since the war.
In recent years, the federal government has made important progress
in improving our understanding of Gulf War illness. However, there
remain serious problems on a number of fronts at VA--including
providing adequate healthcare for Gulf War veterans, and sponsoring the
type of research needed to tangibly improve veterans' health.
I regret to say that, in some sectors within VA, there appears to
have been backward movement, with actions that seem intended to ignore
the science and minimize the fact that there is a serious medical
condition resulting from military service in the 1991 Gulf War. This is
a throwback to early speculation from the 1990s that there was no
problem, or that veterans just had random, disconnected symptoms--
symptoms that invariably develop after any military deployment and are
likely stress-induced. Such opinions were more common in the 1990s,
when there was limited research in this area. But they are inexplicable
today, in 2013, in the face of consistent scientific evidence to the
contrary. Such portrayals are especially troubling when they come from
sectors within the federal agency tasked with serving veterans, and
when they negatively affect government policies, healthcare, and
research.
This is an incredibly important time for Gulf War illness research.
Scientific advances in the last decade have provided important insights
into Gulf War illness--how many people are affected, which factors are
most implicated as contributing to this problem, and the biological
processes that drive veterans' symptoms. Multiple research groups have
now identified a range of neurological differences in veterans with
Gulf War illness--differences in brain structures, brain function, and
autonomic regulation. Studies have also identified specific immune,
endocrine, and hematological differences in veterans with Gulf War
illness. At the same time, results are beginning to come in from
treatment studies that show significant benefits for veterans with Gulf
War illness, with more treatment research in the pipeline, and more
results expected in the near term. After so many years of waiting,
there is finally some hope for Gulf War veterans--hope that they will
have answers that are long overdue and hope that treatments will be
found that can meaningfully improve their health and their lives. Those
of us most involved in this research believe, based on recent progress,
that these successes are possible, and within sight.
What is not acceptable, at this stage, is federal research that is
poorly informed, based on notions developed in the early years after
the Gulf War, rather than on the scientific evidence now available.
Fundamentally, we have a situation wherein two federal agencies sponsor
very different scientific research programs, both ostensibly to address
health issues affecting Gulf War veterans. One program, the Department
of Defense's Gulf War Illness Research Program (GWIRP) is managed by
DOD's Office of Congressionally Directed Medical Research Programs
(CDMRP), and has made great strides in a short time period, with about
$34 million in funding provided over just 5 years between FY2006 and
FY2011 (the most recent year for which full information is available).
When this program was developed in 2006, it began by defining a
mission, by establishing priorities, and by enlisting the input and
guidance of experts in the field and veteran stakeholders. This
mission-oriented approach has yielded impressive progress, and the
proof is in the results. The highest priority research for Gulf War
illness are studies to identify effective treatments. Of the 50
separate projects approved for CDMRP funding between 2006 and 2011, 18
are treatment-related projects--11 clinical studies to assess
treatments for Gulf War illness, and additional studies to evaluate
treatments in animal models of Gulf War illness.
In contrast to DOD's mission-oriented approach, the Department of
Veterans Affairs has not historically established a research vision or
scientific plan, or managed a coordinated program to achieve targeted
priorities for Gulf War veterans. Although long advised by a
Congressionally-mandated independent panel of experts in Gulf War
research (the RAC committee on which I serve), research programs and
studies at VA often run counter to the advice of scientific experts.
The proof, again, is in the results. VA has reported spending over $120
million for ``Gulf War research'' over the 10 years from 2002-2011.
This includes a total of just 5 human and animal projects related to
treatment for Gulf War illness--two focused on stress reduction.
Overall, the many millions of research dollars identified by VA as
supporting ``Gulf War'' research yielded a very limited pay-off for ill
Gulf War veterans.
What happened? Although the devil is often in the details, there
are two overarching themes.
VA has been slow to clearly and accurately acknowledge the Gulf War
illness problem. VA continues to provide mixed signals and vague or
inaccurate representations concerning the reality and nature of Gulf
War Illness. This condition, initially called Gulf War Syndrome by the
media, is now most commonly identified as ``Gulf War illness''--by
scientists, by the Department of Defense, and by veterans. The one
exception is VA, where this illness is referred to in different ways in
different places, often in vague terms, and suggesting that veterans
have no specific or identifiable symptom complex resulting from the
1991 Gulf War.
This ``generic'' representation of the Gulf War illness problem, as
a constellation of disparate symptoms that overlap considerably with
psychiatric disorders, and are commonly found in all populations,
provided the basis for the recent Institute of Medicine (IOM) report on
treatments, commissioned by VA in response to a Congressional
directive. As detailed elsewhere, VA's charge to IOM differed from that
directed by Congress. The resulting report usefully points out
shortcomings in the health care provided to ill veterans. But the
report also repeats and amplifies VA's mischaracterization of the 1991
Gulf War illness problem. Regrettably, VA's charge did not direct the
IOM panel to consider the biological mechanisms of Gulf War illness
that could be amenable to treatment. Nor did the IOM identify methods
that experienced physicians have found to be beneficial for treating
this condition. The report, then, not only failed to address the charge
directed by Congress, it missed the opportunity to provide new and
informed insights about treatments that might be brought to bear for
veterans with Gulf War illness.
There are widespread examples, large and small, of VA
``minimizing'' the Gulf War illness problem. It is unthinkable, for
example, that VA's current national study of Gulf War veterans,
conducted in 2013, does not assess Gulf War illness symptoms. This is
the largest study of 1991 Gulf War veterans conducted in the U.S.,
targeting 30,000 veterans. It includes scores of questions in such
areas as psychological stress, substance abuse, and alternative
medicine. But it does not include the basic symptom data needed to
define Gulf War illness, by any case definition. This is a wasteful and
inexcusable missed opportunity at best, and something akin to
scientific malpractice at worst.
VA's failure to establish an effective and strategic scientific
research program to address priority Gulf War illness research
questions. This has been an ongoing and serious problem detailed by the
RAC in major reports and annual evaluations. Among many possible
examples, I will emphasize here two overarching problems: the lack of
focus, expertise, and planning in VA's Gulf War research program, and
the lack of accountability in how funding is allocated for this
research.
Scientific ineffectiveness of VA's Gulf War research program.
Despite strong urging from scientific experts, VA did not begin the
process of developing a strategic plan for Gulf War research until 20
years after the war. A comprehensive process was finally undertaken in
2011 to develop such a plan, with nongovernment scientific experts and
stakeholders from multiple institutions and offices within VA--nine
groups of at least 6 members each--working over many months to craft
and review the plan. The draft comprehensive plan was largely approved,
by two expert committees, early in 2012. In the next several months,
however, the plan was extensively changed by VA internal editors, who
removed references to Gulf War illness and substantially altered the
program developed to effectively define, study, and treat this problem.
The federal Research Advisory Committee (RAC) on which I serve had long
urged VA to develop a plan of this type, and some of its members
assisted in developing the draft plan. But the Committee was extremely
concerned about the extensive changes made internally by VA, which they
believed to take the science and the teeth out of the plan. Last June,
the RAC withdrew its support of the plan, and reported to the Secretary
that, under current circumstances, the Committee had no confidence in
VA's ability to develop an effective Gulf War research program.
Misallocated and misrepresented Gulf War research funding. The
Research Advisory Committee on Gulf War Veterans' Illnesses (RAC) was
charged by Congress to review and advise on all federal research
programs that address Gulf War health issues. Our committee staff's
review of Gulf War research expenditures each year invariably finds
that a large proportion of VA-identified ``Gulf War'' research studies
would not be considered ``Gulf War'' research by any other government
or nongovernment program. Many of the studies identified as Gulf War
research at VA have limited relevance, or no relevance at all, to the
health of 1991 Gulf War veterans. This is not a trivial problem. In
many years, 60 percent or more of the millions of dollars identified
for ``Gulf War'' research is actually used for other types of research
with no link, in any important respect, to Gulf War service. There are
far too many examples to identify here. But they include notable high-
dollar research items, like the $10 million dollars used to fund a post
mortem brain tissue bank identified as the ``Gulf War Biorepository
Trust.'' In reality, this program is a brain bank for veterans with
ALS, or Lou Gehrig's disease. Most VA ALS patients are older veterans
who served in earlier eras. As of 2010, only 1 of the 60 brains in this
brain bank came from a Gulf War veteran, despite the use of $10 million
in Gulf War funding for this program that, despite its name, neither
targets nor studies Gulf War veterans in any important way. In contrast
to the millions in ``Gulf War'' funding used for non-Gulf War projects,
VA has sponsored relatively few studies in high priority Gulf War
research areas--for example, studies to advance improved diagnosis and
treatments for Gulf War illness.
The proof, as always, is in the results. Together, VA's poor
representation of the Gulf War illness problem, and failure to apply
current scientific knowledge to develop a focused, state-of-the-art
research program, have led to relatively little in the way of tangible
benefits for ill Gulf War veterans. From my perspective as a scientist
who has worked in this area for many years, it is time to get this
right. And certainly the many thousands of veterans who have suffered
with Gulf War illness for more than 20 years would say it is long past
time.
Prepared Statement of Steven S. Coughlin, Ph.D.
Chairman Miller, and Members of the Subcommittee, thank you for the
privilege of testifying today. I am Dr. Steven Coughlin, and I have
worked as an epidemiologist for over twenty-five years, including
positions as a senior cancer epidemiologist at the CDC and as Associate
Professor of Epidemiology and Director of the Program in Public Health
Ethics at Tulane University. I chaired the writing group that prepared
the ethics guidelines for the American College of Epidemiology.
For the past 4 1/2 years, I was a senior epidemiologist in the
Office of Public Health at the Department of Veterans Affairs. In
December 2012, I resigned my position in the US Civil Service because
of serious ethical concerns that I am here to testify about today.
The Office of Public Health conducts large studies of the health of
American veterans. However, if the studies produce results that do not
support OPH's unwritten policy, they do not release them. This applies
to data regarding adverse health consequences of environmental
exposures, such as burn pits in Iraq and Afghanistan, and toxic
exposures in the Gulf War. On the rare occasions when embarrasing study
results are released, data are manipulated to make them unintelligible.
The 2009-2010 National Health Study of a New Generation of US
Veterans targeted 60,000 OIF and OEF veterans and cost $10 million plus
the salaries of those of us who worked on it. Twenty to thirty percent
of these veterans were also Gulf War veterans, and the study produced
data regarding their exposures to pesticides, oil well fires, and
pyridostigmine bromide pills. It also included meticulously coded data
as to what medications they take. The Office of Public Health has not
released these data, or even the fact that this important information
on Gulf War veterans exists. Anything that supports the position that
Gulf War illness is a neurological condition is unlikely to ever be
published.
I coauthored a paper for publication on important research findings
from the New Generation study on the relationship between exposures to
burn pits and other inhalational hazards and asthma and bronchitis in
OIF/OEF veterans. My supervisor, Dr. Aaron Schneiderman, told me not to
look at data regarding hospitalizations and doctors' visits. The
tabulated findings obscure rather than highlight important
associations. When I advised him I did not want to continue as a co-
investigator under these circumstances, he threatened me. Speaking as a
senior epidemiologist with almost 30 years of research experience,
there is no reason to work night and day for years on a complex data
collection effort (which cost US taxpayers millions of dollars) if you
are not comfortable putting your name on publications stemming from the
study or if no scientific publications are released.
Another example of important data that has never been released are
the results of the Gulf War family registry mandated by Congress. These
were physical examinations provided at no charge to Gulf War veterans'
family members. I have been advised that these results have been
permanently lost.
The Office of Public Health has also manipulated information
regarding veterans' health through the questions included in their
surveys. During the preparation of a major survey of Gulf War era
veterans of which I was principal investigator, the Follow-up Study of
a National Cohort of Gulf War and Gulf War Era Veterans, the Research
Advisory Committee on Gulf War Illness made extensive recommendations
regarding changes to the survey. I considered these changes as
constructive, and some were adopted.
The VA Chief of Staff (COS) directed my supervisors to send the
Gulf War study scientific protocol and draft questionnaire out for
additional, objective scientific peer review. The OPH Chief Science
Officer, Dr. Michael Peterson, contacted a long-time friend of his who
is Dean of a school of public health, who identified a faculty member
at his school, although the individual had no background in Gulf War
health research. My direct supervisor, Dr. Schneiderman, spoke with the
peer reviewer and told him that the RAC's comments were politically
motivated, i.e. not objective in nature. The reviewer responded that he
would ``certainly try to help out.'' Not surprisingly, the reviewer's
comments were very favorable. The Chief of Staff was never informed
that the outside reviewer worked for a friend of Dr. Peterson.
My supervisors also made false statements in writing to the Chief
of Staff. For example, they falsely stated that putting the study on
hold long enough to revise the questionnaire would cost the Government
$1,000,000, delay the study for a year or longer, and potentially
result in contract default. None of this was true. But as a result, the
Chief of Staff ordered the survey to proceed without the changes.
The Office of Public Health also handles VA's dealings with the
Institute of Medicine, which is part of the National Academies of
Science. Congress and VA leadership rely on the Institute of Medicine
for authoritative, objective information on medical science.
Last year, VA contracted with the IOM for a Congressionally-
mandated study of treatments for chronic multisymptom illness in Gulf
War veterans. Many Gulf War veterans were distressed that five speakers
selected to brief the IOM committee presented the view that the illness
may be psychiatric, although science long ago discredited that
position. My understanding is that Dr. Peterson, an OPH Chief Science
Officer, identified the speakers the IOM should invite.
I wish to close with a subject of particular importance to me.
Almost 2,000 research participants from the New Generation survey self-
reported that they had thoughts in the previous two weeks that they
would be better off dead. However, only a small percentage of those
veterans ever received a call back from a mental health clinician. Some
of those veterans are now homeless or deceased. I was unsuccessful in
getting senior Office of Public Health officials to address this
problem in the New Generation study.
I was successful in incorporating these call-backs in the Gulf War
survey, and they have saved lives, but only after my supervisors
threatened to remove me from the study and attempted disciplinary
action against me when I appealed their refusal to provide for call
backs to higher authority.
I urge this Committee to direct VA to immediately identify
procedures to ensure that veterans who participate in VA large-scale
epidemiologic studies received appropriate follow-up care so that this
tragedy is not repeated.
I also urge you to initiate legislation to cure the epidemic of
serious ethical problems in the Office of Public Health I have
described to you today. In view of the pervasive pattern where these
officials fail to tell the truth, even to VA leadership, VA cannot be
expected to reform itself. These problems impact the balance of risks
and benefits of federally funded human subjects research costing tens
of millions of dollars and which fail to serve the interests of the
veterans they are intended to benefit.
* * *
Included below is additional written testimony regarding efforts to
ensure that call-back services were available to Gulf War veterans
expressing suicidal thoughts, and mechanisms to provide for the sharing
of survey data to qualified researchers.
In the Spring of 2012, in the course of planning the follow study
of Gulf War Veterans, I had discussions with my supervisors at VA and
with the Chair of the Institutional Review Board (IRB) at the VA
Medical Center in Washington, DC about the need to identify mental
health professionals who could call-back research participants who were
experiencing suicidal ideation and assist them with getting into VA
health care. After my efforts to ensure that Veterans enrolled in the
study were appropriately cared for were blocked by my supervisors, I
contacted the IRB Chair and the VA Office of Inspector General. I was
then openly threatened and retaliated against by my supervisors, who
made false and misleading statements in writing about my efforts to put
the call-back procedures in place. I received a written admonition and
was also told I might be replaced as Principal Investigator of the
study. Over the course of a few months, I successfully appealed the
admonition by telling the truth, with the assistance of a VHA Deputy
Under-Secretary.
In August of 2012, I was finally allowed to engage VAMC mental
health professionals as co investigators on the study. Between August
2, 2012, and January 1, 2013, a team of licensed clinical social
workers and psychologists completed 1,331 calls to Veterans. As of
January 31st VHA clinical personnel have been able to directly contact
984 of those Veterans. Of these, 48 Veterans were referred to the
Veterans Crisis Line for immediate assistance. The majority of calls
provided the Veteran with either the Veterans Crisis Line toll free
number, information about local resources including Vet Centers (local
VA mental health centers) or community based outpatient clinics, and
information on how to enroll for VA health care. Veterans were also
encouraged to talk with their primary care physician about depression
if they were not already engaged in mental health treatment. The VA
mental health professionals who made the call-backs saved lives and
ameliorated human suffering, partly by helping vulnerable research
participants get access to health care benefits to which they are
entitled to. When you are suffering from a neurologic condition such as
Gulf War Illness, or a psychiatric condition such as major depression,
it can be quite difficult to navigate the procedures for gaining access
to health care benefits.
As a further practical suggestion, the Office of Public Health
should put data from their surveys into VINCI (the VA Office of
Research and Development's national data sharing resource). There are a
lot of qualified VA researchers around the country who would love to
have access to New Gen Study data (e.g., the extensive coded data on
prescription medications and doctors visits in the past year) that have
never been published. VINCI provides requires IRB review and approval
and strict confidentiality safeguards. OPH has lost some key data sets
that were stored at the Austin automation center mainframe computer in
Texas. A notable example is the national registry developed several
years for family members of Gulf War Veterans. That registry database,
which was mandated by Congress, is apparently lost forever. The use of
the VINCI data repository and data sharing resource developed by the VA
Office of Research and Development (ORD) would protect against future
catastrophic loss of data.
Prepared Statement of Bernard Rosof, M.D.
Mr. Chairman, Ranking Member Kirkpatrick, and Members of the
Subcommittee, I am Bernard Rosof, Chairman of the Board of Directors at
Huntington Hospital in Huntington, New York. I also served as Chair of
the Institute of Medicine's Committee on Gulf War and Health: Treatment
for Chronic Multisymptom Illness. The Institute of Medicine, or IOM, is
the health arm of the National Academy of Sciences, an independent,
nonprofit organization that provides unbiased and authoritative advice
to decision makers and the public. Thank you for the opportunity to
submit testimony for the record based on the IOM's report Gulf War and
Health: Treatment for Chronic Multisymptom Illness. \1\
---------------------------------------------------------------------------
\1\ IOM. 2013. Gulf War and Health: Treatment of Chronic
Multisymptom Illness. Washington, DC: The National Academies Press.
---------------------------------------------------------------------------
Background
Chronic multisymptom illness (CMI) is a serious condition that
imposes an enormous burden of suffering on our nation's veterans.
Veterans who have CMI often have physical symptoms (such as fatigue,
joint and muscle pain, and gastrointestinal symptoms) and cognitive
symptoms (such as memory difficulties) and may have shared symptoms
with known syndromes (such as chronic-fatigue syndrome [CFS],
fibromyalgia, and irritable-bowel syndrome [IBS]) and other clinical
entities (such as depression and anxiety). In its report, the IOM
committee defined CMI as the presence of a spectrum of chronic symptoms
experienced for 6 months or longer in at least two of six categories--
fatigue, mood and cognition, musculoskeletal, gastrointestinal,
respiratory, and neurologic--that may overlap with but are not fully
captured by known syndromes (such as CFS, fibromyalgia, and IBS) or
other diagnoses.
Despite considerable efforts by researchers in the United States
and elsewhere, there is no consensus among physicians, researchers, and
others as to the cause of CMI. The constellation of unexplained
symptoms experienced by people who have CMI could result from multiple
factors, but the etiology remains unknown.
The Charge to the Committee
The IOM study was mandated by Congress in the Veterans Benefits Act
of 2010 (Public Law 111-275, October 13, 2010). That law directs the
secretary of veterans affairs ``to enter into an agreement with the
Institute of Medicine of the National Academies to carry out a
comprehensive review of the best treatments for CMI in Persian Gulf War
veterans and an evaluation of how such treatment approaches could best
be disseminated throughout the Department of Veterans Affairs [VA] to
improve the care and benefits provided to veterans.''
In August 2011, VA asked that IOM conduct a study to address that
charge, and IOM appointed the Committee on Gulf War and Health:
Treatment for Chronic Multisymptom Illness. The complete charge to the
committee follows.
The IOM will convene a committee to comprehensively review,
evaluate, and summarize the available scientific and medical literature
regarding the best treatments for CMI among Gulf War veterans. In its
evaluation, the committee will look broadly for relevant information.
Information sources to pursue could include, but are not limited to:
Published peer-reviewed literature concerning the
treatment of multisymptom illness among the 1991 Gulf War veteran
population;
Published peer-reviewed literature concerning treatment
of multisymptom illness among Operation Enduring Freedom, Operation
Iraqi Freedom, and Operation New Dawn active duty service members and
veterans;
Published peer-reviewed literature concerning treatment
of multisymptom illness among similar populations such as allied
military personnel; and
Published peer-reviewed literature concerning treatment
of populations with a similar constellation of symptoms.
In addition to summarizing the available scientific and medical
literature regarding the best treatments for CMI among Gulf War
veterans, the IOM will:
Recommend how best to disseminate this information
throughout the VA to improve the care and benefits provided to
veterans.
Recommend additional scientific studies and research
initiatives to resolve areas of continuing scientific uncertainty.
Recommend such legislative or administrative action as
the IOM deems appropriate in light of the results of its review.
The IOM Committee's Conclusions and Recommendations
The committee's conclusions and recommendations are in five major
categories:
Treatments for CMI.
The VA health-care system as it is related to improving
systems of care and the management of care for veterans who have CMI.
Dissemination of information through the VA health-care
system about caring for veterans who have CMI.
Improving the collection and quality of data on outcomes
and satisfaction of care for veterans who have CMI and are treated in
VA health-care facilities.
Research on diagnosing and treating CMI and on program
evaluation.
Treatments for CMI
The committee conducted a de novo systematic assessment of the
evidence on treatments for symptoms associated with CMI. The committee
also identified evidence-based guidelines and systematic reviews on
treatments for related and comorbid conditions (fibromyalgia, chronic
pain, CFS, somatic symptom disorders, sleep disorders, IBS, functional
dyspepsia, depression, anxiety, posttraumatic stress disorder,
traumatic brain injury, substance-use and addictive disorders, and
self-harm) to determine whether any treatments found to be effective
for one of these conditions may be beneficial for CMI. On the basis of
the extensive evidence reviewed, the committee cannot recommend any
specific therapy as a set treatment for veterans who have CMI. The
committee concluded that a ``one size fits all'' approach is not
effective for managing veterans who have CMI and that individualized
health-care management plans are necessary. Specifically, the committee
recommends that VA implement a system-wide, integrated, multimodal,
long-term management approach to manage veterans who have CMI.
The VA health-care system as it is related to improving systems of care
and the management of care for veterans who have CMI
To identify veterans who have CMI and bring them into the VA
health-care system, VA should commit the necessary resources to ensure
that veterans complete a comprehensive health examination immediately
upon separation from active duty. The results should become part of a
veteran's health record and should be made available to every clinician
caring for the veteran, whether in or outside the VA health-care
system. Coordination of care, focused on transition in care, is
essential for all veterans to ensure quality, patient safety, and the
best health outcomes. Additionally, VA should include in its electronic
health record a ``pop-up'' screen to prompt clinicians to ask questions
about whether a patient has symptoms consistent with the committee's
definition of CMI.
Once a veteran has been identified as having CMI and has entered
the VA health-care system, the next step is to provide comprehensive
care for the veteran, not only for CMI but also for any comorbid
conditions. Existing VA programs, such as postdeployment patient-
aligned care teams (PACTs), could be adapted to best serve veterans who
have CMI. VA should develop PACTs specifically for veterans who have
CMI (that is, CMI-PACTs) or CMI clinic days in existing PACTs at larger
facilities, such as VA medical centers. A needs assessment should be
conducted to determine what expertise is necessary to include in a CMI-
PACT. Furthermore, VA should commit the resources needed to ensure that
PACTs have the time and skills required to meet the needs of veterans
who have CMI as specified in the veterans' integrated personal-care
plans, that the adequacy of time for clinical encounters is measured
routinely, and that clinical case loads are adjusted in response to the
data generated by measurements. VA should use PACTs that have been
demonstrated to be centers of excellence as examples so that other
PACTs can build on their experiences. VA should develop a process for
evaluating awareness among teams of professionals and veterans of its
programs for managing veterans who have CMI, including PACTs, specialty
care access networks (SCANs), and war-related illness and injury study
centers (WRIISCs); for providing education where necessary; and for
measuring outcomes to determine whether the programs have been
successfully implemented and are improving care. Finally, VA should
take steps to improve coordination of care among PACTs, SCANs, and
WRIISCs so that veterans can transition smoothly across these programs.
Dissemination of information through the VA health-care system about
caring for veterans who have CMI
A major determinant of VA's ability to manage veterans who have CMI
is the training of clinicians and teams of professionals in providing
care for these patients. To disseminate information about CMI to
clinicians, VA should provide resources for and designate ``CMI
champions'' at each VA medical center. The champions should be
integrated into the care system (for example, PACTs) to ensure clear
communication and coordination among clinicians. VA also should develop
learning, or peer, networks to introduce new information, norms, and
skills related to managing veterans who have CMI. Because many veterans
receive care outside the VA health-care system, clinicians in private
practice should be offered the opportunity to be included in the
learning networks and VA should have a specific focus on community
outreach. Another dissemination opportunity is for VA to provide
required education and training for its clinicians in communicating
effectively with and coordinating the care of veterans who have
unexplained conditions, such as CMI.
Improving the collection and quality of data on outcomes and
satisfaction of care for veterans who have CMI and are treated
in VA health-care facilities
To improve outcomes and ultimately to improve the quality of care
that the VA health-care system delivers, VA should provide the
resources needed to expand its data collection efforts to include a
national system for the robust capture, aggregation, and analysis of
data on the structures, processes, and outcomes of care delivery and on
the satisfaction with care among patients who have CMI so that gaps in
clinical care can be evaluated, strategies for improvement can be
planned, long-term outcomes of treatment can be assessed, and this
information can be disseminated to VA health-care facilities.
Research on diagnosing and treating CMI and on program evaluation
Many studies on treatments for CMI reviewed by the committee have
methodological flaws. Therefore, future studies funded and conducted by
the VA to assess treatments for CMI should adhere to the methodologic
and reporting guidelines for clinical trials, including appropriate
elements (problem-patient-population, intervention, comparison, and
outcome of interest) to frame the research question, extended follow
up, active comparators (such as standard of care therapies), and
consistent, standardized, validated instruments for measuring outcomes.
VA should fund and conduct studies of interventions that evidence
suggests may hold promise for treatment of CMI.
The committee did not find comprehensive evaluations of VA
programs, such as the PACTs, SCAN-ECHO programs, and WRIISCs. Program
evaluation--including assessments of structures, processes, and
outcomes--is essential if VA is to continually improve its services and
research. Therefore, the VA should apply principles of quality and
performance improvement to internally evaluate VA programs and research
related to treatments for CMI and overall management of veterans who
have CMI. This task can be accomplished using such methods as
comparative-effectiveness research, translational research,
implementation-science methods, and health-systems research.
Summary
As detailed above, numerous opportunities exist for VA to improve
and expand its health-care services for veterans who have CMI. The IOM
committee encourages VA to apply the principles set forth in its
report, including at a minimum adequate resources to ensure early entry
into the VA health-care system and adherence to the principles of
patient-centered and compassionate care, shared decision-making, and
regular clinical follow up as necessary. Our veterans deserve the very
best health care.
Thank you, again. I would be happy to answer any questions the
Subcommittee might have.
Executive Summary
Gulf War and Health: Treatment for Chronic Multisymptom Illness
On January 23, 2013, the Institute of Medicine (IOM) released its
report, Gulf War and Health: Treatment for Chronic Multisymptom
Illness. \1\ IOM is the health arm of the National Academy of Sciences,
an independent, nonprofit organization that provides unbiased and
authoritative advice to decision makers and the public.
---------------------------------------------------------------------------
\1\ IOM. 2013. Gulf War and Health: Treatment of Chronic
Multisymptom Illness. Washington, DC: The National Academies Press.
---------------------------------------------------------------------------
Chronic multisymptom illness (CMI) is a serious condition that
imposes an enormous burden of suffering on our nation's veterans.
Veterans who have CMI often have physical symptoms (such as fatigue,
joint and muscle pain, and gastrointestinal symptoms) and cognitive
symptoms (such as memory difficulties) and may have shared symptoms
with known syndromes (such as chronic-fatigue syndrome, fibromyalgia,
and irritable-bowel syndrome) and other clinical entities (such as
depression and anxiety). Despite considerable efforts by researchers in
the United States and elsewhere, there is no consensus among
physicians, researchers, and others as to the cause of CMI.
The Department of Veterans Affairs (VA) asked that IOM conduct a
study to evaluate treatments for CMI among Gulf War veterans to
determine how to best manage care for veterans who have this condition.
IOM assembled an expert committee to address this task.
The committee conducted an extensive systematic assessment of the
evidence on treatments for CMI. It also assessed treatments for a
number of related and comorbid conditions to determine whether any of
them may be beneficial for CMI. On the basis of its assessment, the
committee cannot recommend any specific therapy as a set treatment for
veterans who have CMI. The committee concluded that a ``one size fits
all'' approach is not effective for managing these veterans and that
individualized health-care management plans are necessary.
Specifically, the committee recommends that VA implement a system-wide,
integrated, multimodal, long-term management approach to manage
veterans who have CMI.
In its report, the committee makes 13 additional recommendations
aimed at identifying veterans who have CMI, bringing them into the VA
health-care system, and improving the quality of their care. VA should
provide comprehensive care for the entire constellation of symptoms
experienced by the veteran--including CMI as well as other health
conditions. A health-care team-based approach is essential to provide
this type of comprehensive care. Existing VA programs, such as
postdeployment patient-aligned care teams, could be adapted to best
serve veterans who have CMI.
Numerous opportunities exist for VA to improve and expand its
health-care services for veterans who have CMI. Our veterans deserve
the very best health care.
Prepared Statement of Anthony Hardie
Thank you, Chairman Coffman, Ranking Member Kirkpatrick and Members
of the Veterans' Affairs Subcommittee on Oversight and Investigations
for today's hearing.
Special thanks also to full committee Chairman Miller, Ranking
Member Michaud, and Dr. Roe, whose leadership is helping fund the Gulf
War Illness Congressionally Directed Medical Research Program - the
only federal program in the 22 years since the 1991 Gulf War
effectively working to improve the health and lives of ill Gulf War
veterans.
Thank you also to the Gulf War veterans who traveled to attend this
hearing, and to all the affected veterans watching from home.
BACKGROUND
As several Members already know, I'm a veteran of more than seven
years active duty Army Special Operations service that included the
1991 Gulf War, Somalia, and four additional, non-combat overseas
deployments. As I've provided in previous testimony, I developed health
issues that commenced in the Gulf and have plagued me ever since,
including a chronic cough that has never subsided, and other chronic
health issues including chronic sinusitis, fatigue, irritable bowel,
widespread pain, neurological, and other health issues.
As I have testified previously, many of us Gulf War veterans'
chronic health issues began while still in the Gulf, in the prime of
our young adulthood and at the peak of our health and physical fitness.
Twenty-two years later, for many of us, our health issues have only
worsened since first onset. In 2009, my own health worsened to the
point where I was no longer able to continue working.
I wish that it was only me who was affected, but my experience is
far from unique. A 2010 Institute of Medicine report summarized a large
body of existing research and showed that Gulf War chronic multi-
symptom issues continue to afflict roughly one in three of us Gulf War
veterans.
Like nearly all other service-injured veterans I've encountered,
the quest remains the same: effective treatments, and justice. As such,
I'm honored to serve on the Congressionally chartered Research Advisory
Committee on Gulf War Veterans' Illnesses (RAC), and the integration
panel of the treatment-focused Gulf War Illness Congressionally
Directed Medical Research Program (CDMRP) that sets the direction of
the program and makes final recommendations on which research proposals
to fund. I've also been honored to serve on the VA's Gulf War Research
Steering Committee.
WHAT'S NOT WORKING
In 2009, I noted in testimony that Gulf War veterans looked to the
new VA leadership, ``with hopeful anticipation and continue to wish for
their encouragement in achieving so many long-overdue and deeply needed
goals on our behalf.'' Despite an initially strong restart,
disappointingly, Gulf War veterans again seem to have been lost in the
shuffle.
In 2009, I also testified that VA's own Gulf War research advisory
``committees were not only not consulted; they still haven't even been
informed of . . . decisions made without their input on issues directly
within their purview.'' These problems are now much worse. VA staff
routinely ignore Congress, the law, expert advisors, basic democratic
principles, and common decency.
The real proof for Gulf War veterans is one of outcomes: VA still
has no proven effective treatments for Gulf War Illness patients at VA
medical centers, where they are often still thought to be
psychosomatic. No VA newsletters to keep Gulf War veterans informed. No
implementation of expert advisors' strategic plans and recommendations.
No consistent, reliable medical surveillance of Gulf War veterans,
including data on the prevalence of MS, cancers, or other serious
health outcomes among Gulf War veterans.
VA's research focus over the last two decades has been largely
related to stress, psychological issues, other diseases that affect
veterans of all eras, and what has in the end amounted to trying to
disprove there's anything wrong with the estimated one-third of Gulf
War veterans suffering from Gulf War Illness. Instead of being aimed
squarely at treatments and improving ill veterans' health and lives,
many of these misguided efforts have continued through to the present.
In VA's most recent annual national research review publication, VA's
Gulf War research focus is characterized as, ``investigating whether
service in the Gulf War is linked to illnesses Gulf War veterans have
experienced''. [emphasis added]
These failures are no accident.
IOM Treatments Committee. A landmark 2010 report by the Institute
of Medicine (IOM) confirmed successive research findings that the
chronic multi-symptom illness we call Gulf War Illness is a unique
diagnosis, that it is physical (not psychiatric) in nature, that it
likely involves the interplay between environmental agents and
individual genetics, that it affects more than 250,000 veterans of the
1991 Gulf War and other U.S. forces, and that treatments can likely be
found. This IOM report confirmed similar 2008 RAC findings. IOM urged
``a renewed research effort with substantial commitment to well-
organized efforts,'' to diagnose and treat GWI. Congress quickly
followed with additional mandates to launch research, followed by a new
VA contract with IOM related to treatments.
At its first meeting, presenters before a new IOM ``treatments''
panel diverged radically from both the Congressional authorizing
language and established science. The panel was charged by VA to
conduct a literature review rather than to consult with knowledgeable
medical practitioners experienced in treating ill Gulf war veterans.
And nearly all of the first presenters focused on ``stress-as-cause'',
psychological, and psychosomatic issues - all debunked years ago.
For example, one of the stress-as-cause presenters to the IOM
``treatments'' committee said, ``Stress has been indicated as a factor
in Gulf War Illness,''i citing three studies as reference. I
immediately recognized one of cited studies, as its principal
investigator had presented her findings to the RAC on which I serve,
noting that what she found in ill Gulf War veterans was distinct from
and not PTSD. The researcher's actual conclusions were: ``Despite the
overlap of chronic unexplained health symptoms and PTSD in GWV, these
symptom constellations appear to be biologically distinct.''ii This
blatant mischaracterization of the research conclusions was not unique.
And similar to other presenters that day, this presenter focused the
second half of his talk on ``stress management via relaxation-response
(RR) therapies'' - a mere band-aid for suffering veterans. The ill Gulf
War veterans who called in to listen to the panel's two public meetings
were of course outraged.
Furthermore, the statutory mandate was for IOM to, ``convene a
group of medical professionals,'' ``experienced in treating,'' 1990-91
Gulf War veterans. Instead, VA created a charge to the committee that
it was to conduct a highly restricted literature review of published
studies - which missed the entire statutory intent of eliciting
potentially effective treatment modalities from experienced
practitioners already caring for ill Gulf War veterans.
Additionally, the panel was led to lump together all sorts of
chronic multisymptom issues, (``pick any two of six'') including in the
general population, defined so broadly as to include nearly any human
health condition.
In July 2009, a former IOM Gulf War and Health committee chair
testified as to the unbiased and independent nature of such IOM
committees: ``The reports are developed through an established study
process designed to ensure committees and the reports they produce are
free from actual or potential conflicts of interests, are balanced for
any biases, and are independent of oversight from the sponsoring
agency.''iii However, in the case of this IOM treatments committee, the
sponsoring agency - VA - not only issued the contract, but also
presented its charge to the committee, shifted and limited the scope of
what the committee could consider from the statutory authorizing
language, and included multiple presenters to the committee - a far
different reality from the unbiased 2009 expert witness testimony
portrait.
A written request by three of us veterans to the IOM President for
a copy of the VA-IOM contract and the presenter selection criteria was
minimized and never fulfilled. A request to the VA Secretary's office
for the contract and appendant documents was similarly never fulfilled;
the same goes for a FOIA request to VA. However, what is clear is the
statutory language directing the formation of the committee, the VA's
charge to the committee that it of course followed, and the dramatic
divergence between the two.
Thus, the process was fatally flawed through the actions of VA and
likely other staff. The result was the well-intentioned, veteran-
focused panel members almost entirely failed to meet the committee's
statutory mandate requiring a focus on consultation with medical
practitioners experienced in treating ill Gulf War veterans, which
could have gleaned important, beneficial insights. Furthermore, the
final report included nearly 50 pages of recommended psychological
treatment for a condition that is not psychiatric in nature. Finally,
the report missed the main point emphasized by the 2010 IOM panel:
effective treatments for GWI do not yet exist, but likely can be found,
and a renewed national effort is recommended to develop treatments and
preventions.
Strategic Plan. After being publicly criticized for not having a
strategic plan to solve Gulf War Illness treatment, VA staff tasked its
new, non-public Gulf War Steering Committee (on which I was appointed
to serve as the sole Gulf War veteran representative) to begin work to
create such a plan. The Steering Committee, the RAC, and the VA's
National Research Advisory Council (NRAC), and a myriad of drafting
subcommittees that included VA and non-VA researchers and Gulf War
veterans spent a year and a half in a model process finally developing
a strategic plan.
The plan was a comprehensive, outcome-oriented, consensus-based. It
was developed with the expertise of a substantial number of scientists
and affected Gulf War veterans serving on a myriad of engaged, all-
volunteer drafting subcommittees. It was aimed squarely at improving
the health and lives of veterans suffering from Gulf War Illness. It
met the approval of the Steering Committee, RAC, and NRAC.
However, after the report had been completed, VA staff quietly and
unilaterally gutted and whitewashed the plan. Despite having been
active participants in every step of the process, VA staff even went so
far as to remove ``Gulf War Illness'' from the title. The end result
was that it was no longer a plan to execute the IOM's call for a
``renewed research effort . . . to better identify and treat
multisymptom illness in Gulf War veterans.'' Instead, it had become a
renewed license for VA staff to do pursue whatever research whims might
next tickle their fancy, which to date has largely included research
irrelevant or even inimical to Gulf War veterans' treatment needs - in
other words, more of the same. One leading NRAC participant described
feeling, ``betrayed'', and having ``wasted'' a year-and-a-half -
sentiments I echoed then and today.
When the RAC met to discuss the whitewashed report, the Gulf War
veteran members of the RAC were so angry at the wasted efforts of more
than a year, the other Gulf War veteran on the panel stormed out in
protest, and I discussed resignation with the committee chair. Our
panel responded by a unanimous decision to reject and return the plan
to VA as unacceptable, and to declare ``No Confidence'' in VA's
handling of Gulf War Illness research.
It continues to get worse. VA staff have initiated sole-source
contracting with IOM for a ``literature review'' to develop a new Gulf
War Illness case definition. In addition to this process being in
complete contravention to the thorough, careful process to develop a
new case definition laid out in the draft Strategic Plan, I'm also told
that this process is unprecedented and likely to harm Gulf War
veterans. And, VA staff not only didn't inform the RAC of this
initiative (the legal announcement was discovered online by another
Gulf War veteran) but have refused to provide any details to the RAC.
Why is VA allowed to continue unchecked?
Multiple VA Failures. The ensuing June 19, 2012 RAC report found
that, ``those responsible for VA [Gulf War] research fail to mount even
a minimally effective program, while promoting the scientifically
discredited view that 1991 Gulf War veterans have no special health
problem as a result of their service.''
The RAC report goes on to detail serious new grievances against VA,
which in addition to gutting the proposed Gulf War Illness Research
Strategic Plan, include secret cuts to the Gulf War Illness research
budget, misrepresentation to VA leadership and Congress, blatant
misdirection from statutory mandates, law violations, and citing as its
research priority efforts to determine ``whether'' Gulf War veterans'
illnesses are in fact linked to their Gulf War service rather than
treatments to improve their health and lives.
No Meetings. VA staff have for one reason or another not allowed
the RAC to hold a public meeting since that June 19th meeting. Public
meetings scheduled for November/December and February in Washington, DC
had to be cancelled.
In more recent times, the VA Secretary's office has remained
largely and disappointingly silent and disengaged. Unlike his
predecessors, and despite the Congressional language charging the RAC
to advise the Secretary, Secretary Shinseki has never once personally
come to a RAC meeting.
OPH Survey. Among the issues identified in the June 19th RAC report
is regarding a follow-up survey by the VA's Office of Public Health
(OPH) of a national cohort of Gulf War and Gulf War Era Veterans
(earlier studies were conducted in 1995 and 2005; the health surveys
are done to understand possible health effects of service and guide
health care delivery).
This survey was heavily critiqued by the RAC on which I serve for
failing to include expert recommendations related to Gulf War Illness,
the overarching concern of the largest number of Gulf War veterans. Not
only did the responsible VA staff stonewall our panel during a public
meeting, entrenched VA bureaucrats ultimately convinced VA leadership
to ignore the RAC's sound recommendations.
MS Law. Another of the issues identified in the RAC report is that
VA continues to violate the law that requires VA to contract with IOM
for a large-scale study to determine how prevalent Multiple Sclerosis
is among veterans of the 1990-91 Gulf War and the Iraq and Afghanistan
Wars.
The 2008 law directs VA to contract with IOM to conduct the
prevalence study with a specific deadline. That deadline has long past,
but VA continues to violate the law. It is my understanding that VA-OPH
is the entity responsible for VA contracts with IOM.
It's more than a little ironic that while VA continues to ignore
this law mandating MS prevalence research, an August 7, 2012 VA press
release touted MS research as among VA accomplishments for Gulf War
veterans.
GWVI Task Force. VA's Gulf War Task Force initially seemed to get
off to a good start. However, VA leadership chose to not follow
recommendations to involve affected stakeholders on the Task Force. As
a closed group composed solely of internal VA staff, it has been prone
to ``groupthink'', to repeating the same old problems, and to being
entirely closed to and seemingly unresponsive to the Gulf War veteran
public it was intended to serve. It operates in secret. Its meetings
are not open to veterans or the public, the minutes of its monthly
meetings are not made public, it has no website, and it has publicized
only two reports in its multi-year existence. This secrecy is a far cry
from the openness and transparency promised by our President and
expected by affected veterans.
To its credit, the Task Force has fostered substantial written
input from Gulf War veterans on its draft reports. However, most of
that input has not appeared to impact the Task Force's final reports.
The Task Force reports have also included a number of initiatives.
As one example, VA outlined a new clinical care initiative in its 2011
GWVI Task Force Report. Since information about it is neither public
nor has been shared with the federal panel charged by Congress with
overseeing Gulf War health research, we can only guess at how the
clinical care model project might be going. In any case, it's hard to
imagine how helpful a mere model of healthcare delivery will be to ill
veterans when VA has not yet developed even a single proven effective
GWI treatment.
Discontinuation of ``Gulf War Review''. In my 2007 testimony, I
noted that VA's ``Gulf War Review'' newsletter - VA's quarterly direct-
mail publication to Gulf War veterans - had apparently been
discontinued. VA OPH staff testified at that hearing that a new issue
would be forthcoming soon. Instead, no issues were published that year
at all.
Now, the Gulf War and OIF/OEF newsletters have not been published
since 2010. Ironically, the last Gulf War issue included a feature
article: ``Secretary Shinseki Marks 20th Anniversary of Gulf War with
Renewed Pledge to Improve Care and Services to Gulf War Veterans.''
Congress should pass legislation mandating the continuation in
perpetuity of this and related quarterly veteran-oriented publications,
which should include ongoing, clear, spin-free updates on every
federally funded research study and benefits change relevant to the
target population.
Consequences of ``Psychiatrization'' of Physical Illness. Many of
us heard recently of an American Legion Iraq War veteran whose
longstanding symptoms were found to be caused by Q-Fever. After
appropriate treatment, he was essentially cured.
It is unconscionable that DoD and VA do not perform comprehensive
infectious disease and immunological testing in veterans returning from
overseas areas where such diseases are endemic. IOM's 2012
``treatments'' report noted that Iraq and Afghanistan War veterans are
symptomatic of the committee's loosely defined, ``chronic multisymptom
illness''.
Congress should pass legislation requiring such testing identify,
treat, or definitively rule out a clear list of at least nine
debilitating, chronic infectious diseases endemic to southwest Asia
deployments.
Claims. After a complete overhaul, VA has now apparently ceased
publishing its data report on Gulf War veterans. The report was
formerly published quarterly; VA has failed to published any further
reports since February 2011. These reports are important for
identifying approval rates of VA claims, among other issues.
In 2010, VA issued a new FAST letter clarifying ``medically
unexplained chronic multisymptom illness'' claims. However, any
aggregate effect of this effort remains unclear due to VA's
discontinued publication of its quarterly Gulf War/Era/OIF/OEF data
report. Congress should pass legislation to fix this problem.
I believe VA's new efforts to create Disability Benefits
Questionnaires (DBQ's) are steps in the right direction. However, the
fact that there is not one for ``medically unexplained chronic
multisymptom illness'' claims diminishes the weight of the related 2010
FAST letter. Nothing will help change the VA culture of deferring,
delaying, and denying these claims than creating a clear DBQ in black
and white and ensuring its full implementation in the claims approval
process. Congress should hold VA accountable until VA fixes this
problem.
VA has made no apparent effort to correct flaws in the rating
schedule for Fibromyalgia and Chronic Fatigue Syndrome (CFS/ME), as I
noted in my 2009 testimony, which continue to authorize 100 percent
ratings for veterans with CFS alone but unjustly limit ratings to 40
percent for veterans with both CFS and fibromyalgia. Congress should
pass legislation to fix this longstanding problem that VA continues to
ignore but which affects many Gulf War veterans.
However, VA continues to publish an annual report on Gulf War
research, in accordance with Section 707 of Public Law 102-585, as
amended by section 104 of Public Law 105-368 and section 502 of Public
Law 111-163, which require that an annual report be submitted to the
Senate and House Veterans' Affairs Committees on the results, status,
and priorities of research activities related to the health
consequences of military service in the Gulf War (GW) in Operations
Desert Shield and Desert Storm; August 2, 1990 - July 31, 1991.
Congress should pass similar legislation requiring VA to submit to
Congress quarterly reports regarding 1991 Gulf War, OIF, OEF, and Gulf
War Era veterans, providing aggregate data of claims filed, pending,
approved, and denied, health care enrollment, and other benefits usage,
similar to the former Gulf War Veterans Information System (GWVIS) and
Gulf War Era Veterans Reports.
VA Still Excludes Some Gulf War Veterans. VA continues to unjustly
exclude some Gulf War veterans from Gulf War-specific benefits,
including those whose Gulf War service was in Turkey or Israel. And,
Gulf War chronic multisymptom illness presumptives extend to Iraq War,
but not Afghanistan War (OEF) veterans. Congress should pass
legislation to fix these problems.
Cabal. To date, VA has no proven effective treatments, not because
such treatments are impossible to find, but because a small cabal of
federal bureaucrats and contractors work at every step to delay, defer,
and deny, and even so far as to obfuscate and refuse to implement laws,
policies, and expert recommendations.
These issues are not just limited to affecting veterans of the 1991
Gulf War. DoD's ``Force Health Protection'' and VA's Office of Public
Health (OPH) continue to find ``no evidence'' of the very real health
issues affecting countless thousands of additional veterans caused by
their exposure to burn pits, chemical solvents in drinking water,
contaminated and questionable anthrax and other vaccinations, inhaled
or ingested Depleted Uranium (DU) particulates. These misguided people
also continue to minimize and spin the all to real health effects of
blast waves, concussions and other brain injuries, combat psychological
traumas, and more.
These are not abstract forces or nameless, faceless bureaucrats.
They are people like Kelley Ann Brix from the Defense Department's
misleadingly named ``Force Health Protection'' office and psychiatrist
Charles Engel, people who have seemed at every step of the way for most
of the last two decades to have fought against the legitimate health
interests of Gulf War veterans.
If these bureaucrats and contractors somehow believe they're
helping, one need only evaluate the outcomes. Look only to what VA has
to offer ill veterans coming to VA for help: band aids for symptoms and
psychological counseling to at best help cope with enduring physical
ailments.
Much of the propaganda that has come out of ``Force Health
Protection'' does not foster servicemembers' health, it denies that
health hazards are hazardous, that war has health consequences, that
the health conditions afflicting troops are even real. They construct
studies that look in the wrong direction, then finding nothing as would
reasonably be expected they use these flawed findings to justify
stopping looking.
It is possible this cabal, which for all intents and purposes
appears to be working against veterans' legitimate health interests, is
taking its direction from the 1998 Presidential Review Directive 5,
which was developed as a result of emerging Gulf War health issues and
included extensive recommendations on ``strategic health
communications''. Perhaps some have construed these extensive
recommendations as a directive to coordinate national public relations
efforts to minimize deployment health issues. But ``spin'' is no
substitute for epidemiology to identify deployment injury and illness
with the end goals of treatment and prevention. Congress should
carefully review, repeal, and replace PRD-5 and regulations and
programs subsequent to PRD-5.
For example, the RAND study on Gulf War vaccinations has been
suppressed for more than a decade. Taxpayers paid for that study, and
Congress should order it released.
As Administrations come and go, these heretofore unaccountable
staff and contractors must be held accountable. When VA appointees are
misled and misdirected and VA appointees fail to fix longstanding
problems, then perhaps only Congress can create the statutory
conditions to ensure desired outcomes.
Divergence from the letter and spirit of the law should be
criminalized, with violators sentenced to prison.
And until these changes can be made, these wayward entities,
including FHP and VA-OPH should be substantially defunded, their
employees permanently laid off, their contractors cut loose, and their
funding redirected to entities like the CDMRP and DARPA that continue
to prove they can achieve outcome-oriented results.
In short, despite all the best promises and intentions, actions
speak louder than words: VA has again broken Gulf War veterans' trust.
WHAT IS WORKING
However, there are two bright spots for the treatment of ill Gulf
War veterans.
The GWI CDMRP. As an ill and affected Gulf War veteran, I am
strongly supportive of the work being done by the Gulf War Illness
Congressionally Directed Medical Research Program (CDMRP). It is very
much unlike other VA and DoD efforts, which have been consistently
criticized over the last two decades.
People suffering from the health condition under review, called
``consumers,'' are fully integrated into the entire CDMRP research
proposal review process - a key feature of all of the CDMRP's. Consumer
reviewers are placed on par with the scientist reviewers as equally
respected, personally affected advisors, helping to enhance the
program's focus, ensure appropriate impact of funded proposals, and
impart the sense of urgency felt by fellow afflicted patients.
Since the program began with Fiscal Year 2006 funding, I've had the
honor of serving as a consumer reviewer for the Gulf War Illness CDMRP.
I've found the program efficient, agile, carefully focused by the
Congressional authorizing language, and fully engaged in finding and
successfully funding the best, most responsive research proposals aimed
at improving the health and lives of veterans afflicted by Gulf War
Illness. And I've found the staff and contractors to be consistently
capable and competent, responsive to the review panel, and integral to
the success of the programs.
It is my understanding from other consumer reviewers that the same
holds true for other CDMRP research programs.
And, as a consumer reviewer since the program began, I've also had
the privilege of reviewing virtually all of the hundreds of pre- and
full proposals in the history of the program, which has imparted a
unique perspective.
As previously described, the collective efforts of this small cabal
of DoD and VA (and perhaps also IOM) staff have produced a dearth of
tangible results, no proven treatments, and have served only to
disenfranchise, anger, and unite ill Gulf War veterans. However, in
stark contrast to the national disgrace of that failed cabal, there are
literally hundreds of highly capable scientists and medical
practitioners who are ready, willing, able, and actively working to
help solve Gulf War Illness. Many are at top research institutions.
They spend countless hours compiling detailed research proposals, often
as long as a hundred or more pages, carefully articulating how and why
they believe they can help ill Gulf War veterans. For those who are
ultimately funded, they appear to be truly making a difference.
One of the earliest successes of the GWI CDMRP is the discovery
that a particular anti-oxidant can help reduce some Gulf War Illness
symptoms. Another, studying the sarin nerve agent to which hundreds of
thousands of Gulf War troops were exposed, may have important
implications for future military or civilian populations in a homeland
security situation since the research findings suggest low-dose, non-
symptomatic exposure to sarin may result in long-lasting cardiac and
neurological dysfunction. Another is that chronic inflammation may
underlie many Gulf War Illness symptoms, and if so, effective
treatments may already exist. Still another is taking an animal model
of Gulf War Illness chemical exposures, which has effectively
reproduced GWI symptoms, and testing an already available drug to treat
pain and memory deficits common in GWI.
It is also clear that many researchers are making great strides
towards unraveling and treating Gulf War Illness without the need to
know the specific substance(s) of causation. Unraveling the specifics
of what is happening now in the brains and bodies of ill Gulf War
veterans appears to be at least as relevant to the identification and
development of effective treatments.
The 2010 IOM committee wrote that effective treatments for Gulf War
Illness can likely be found and suggested a path forward, ``to speed
the development of effective treatments, cures, and, it is hoped,
preventions.'' To date, only the Gulf War Illness CDMRP has been fully
engaged in this effort, though still inadequately funded. Most
importantly, these CDMRP efforts are producing real results.
Meanwhile, VA staff have wasted more precious years, squandered
myriad experts' time, energy, and hard work, and further alienated not
just their most engaged advisors but also the very Gulf War veterans
they are supposed to be helping. And though VA research staff have told
us they are now funding treatment studies, the RAC on which I serve has
not been provided specific information on these new efforts.
VA's WRIISC's. In addition to the GWI CDMRP, I hear almost
exclusively praise from ill Gulf War and other veterans who have
participated in the VA's three regional War Related Illness and Injury
Study Centers (WRIISC's). The centers take veterans on referral from
local VA healthcare providers and ensure a comprehensive workup to
identify any diagnosable health conditions. I also hear from some
veterans that they've been able to use WRIISC evaluations to support
their VA claims, an important piece of justice while proven effective
treatments remain to be found. And, WRIISC clinicians are thereby
regularly exposed to a constant inflow of patients whose collective
experiences could help solve Gulf War Illness, another potential
benefit.
However, as word regarding these important clinical resources has
spread among veterans, there are now apparently long waits to
participate. I've been told by some veterans the waiting list is now
many months long, perhaps even as long as a year. Congress can help
ailing veterans by allocating additional authorization and funding to
these two areas that are indeed helping.
NEXT STEPS
We Gulf War veterans have been fighting the federal bureaucracy for
much of the last 22 long years. We've seen laws passed only to seem
them circumvented or not implemented with impunity. The independent
expert panel created by Congress in 1998 was supposed to end gridlock
at VA. The release of the RAC's 2008 report, and the IOM's 2010 study
showed not only that GWI is real--what Gulf War veterans had been
saying all along--but that effective treatments could be found,
bringing much hope to many distraught service-disabled veterans.
However, it is now clear that VA staff have continued are presumably
will continue to betray Gulf War veterans for the reasons described
above.
We have had countless Congressional hearings on Gulf War veterans'
health and benefits. Time after time, researchers, advocates, veterans,
and family members have told Congressional committees about the
ongoing, serious problems they're experiencing and recommendations to
fix them. Time after time, the Congressional committee members ask VA
pointed questions about the VA's many missteps, and VA staff make more
on-the-spot promises, which almost always turn out to be empty. Then a
year or two later, and it's yet another round of the same.
I hope today's hearing will be different. I hope that Committee
members, and perhaps finally even VA's present leadership, will see
that that Gulf War veterans have been right all along - again: that VA
and DoD staff, including in VA's Office of Public Health and DoD's
Force Health Protection and possibly with cooperation from one or more
IOM staff, have been circumventing and flouting the law, Congress, and
the needs of veterans; that on occasion after occasion they have been
obfuscating, manipulating, and even lying. The end result is that while
we're closer today to finding effective treatments for the one-third of
Gulf War veterans who, like me, remain ill and disabled more than two
decades later, any progress is in spite of and not because of this
cabal's efforts.
Today's hearing will not uncover every serious misdeed and
transgression coming out of the longtime staff and contractors at VA or
in DoD's Force Health Protection. In the strongest possible terms, I
encourage the Members of this body to take further steps necessary to
right these ongoing wrongs, including reallocation of funding from
these non-performing entities, legislation to provide criminal
sanctions for such behavior, and comprehensive legislation to right
these many wrongs.
And despite all the best promises and intentions, actions speak
louder than words: VA continues unabated in its long tradition of
violating Gulf War veterans' trust.
RECOMMENDED LEGISLATION
VA staff must be forced by law to seek out, foster, and find the
best Gulf War Illness treatment research aimed at improving the health
and lives of those whose health has been impacted by their wartime
exposures. To that and related ends, Congress should develop and pass
legislation that includes:
1) A provision making it a crime punishable by federal imprisonment
for a government employee or contractor to attempt to manipulate an IOM
report ordered by a government agency, or for an IOM employee or member
to conspire with a government employee or contractor for the purpose of
manipulating a report.
2) A provision directing VA to immediately contract with the IOM
for a study to determine the prevalence of multiple sclerosis in Gulf
War and later veterans, as directed by P.L. 110-389, Section 804, and
to provide criminal penalties for failure to comply.
3) A provision directing VA to immediately terminate the IOM case
definition contract and contract instead with the DoD Congressionally
Directed Medical Research Programs (CDMRP) Gulf War Illness program to
develop a case definition that is linked to Gulf War service and
excludes mental conditions, and that follows customary case definition
practices (including assembling a committee of experts in the illness,
who can consult original data sources).
4) Provisions to defund mis-performing VA-OPH and DOD FHP
functions.
5) A provision requiring VA to make the data obtained from its
surveys available to qualified researchers subject to reasonable
restrictions, similar to other agencies.
6) A provision requiring an addendum to the national Follow-Up
Survey of Gulf War and Gulf War Era Veterans be sent immediately to the
full survey cohort that asks the RAC's recommended symptom inventory.
7) A provision requiring VA medical staff be trained in the new
2011 standards, which show Gulf War Illness is not psychiatric.
8) A provision mandating future VA Gulf War research be focused on
developing effective treatments to improve the health and lives of ill
Gulf War veterans.
9) A provision amending the statute requiring the reports (Section
707 of Public Law 102-585, as amended by section 104 of Public Law 105-
368 and section 502 of Public Law 111-163), to provide that these
annual VA research summary reports to Congress should include only
those human studies in which 1990-1991 GW veterans represent at least a
majority of the cases (vs. controls), and only those animal studies
addressing exposures pertinent to the 1990-1991 Gulf War.
10) A provision requiring VA to contract with the DoD CDMRP Gulf
War Illness research program, to conduct the review of best treatments
for chronic multisymptom illness in Persian Gulf War veterans specified
in Sec. 805(a) of PL 111-275, which VA staff manipulated into an
inconsequential literature review.
11) Provisions providing adequate funding for Gulf War Illness
research to identify effective treatments, including:
a) Provisions in the FY14 and subsequent DoD authorization and
appropriations bills that allocate at least $25 million in annual DoD
funding to the CDMRP Gulf War Illness research program;
b) Provisions in the FY14 and subsequent VA authorization and
appropriations bills, requiring that VA spend at least $25 million
annually on GWI research AND directing VA to contract with DoD CDMRP to
conduct at least $20 million of VA-funded research as part of the CDMRP
Gulf War Illness research program, as the CDMRP determines in its sole
discretion.
c) Adequately funding research to identify treatments for Gulf War
Illness is imperative now to make up for the twenty-two years lost
while the federal government has obstructed this research.
12) Provisions in the FY14 and subsequent VA authorization and
appropriations bills directing to expand the number, scope, reach, and
funding for VA's War Related Illness and Injury Study Centers
(WRIISC's).
13) A provision directing VA to implement the February 1, 2012
published RAC recommendations for the New Gulf War-Era Data Report.
14) A provision directing VA to implement the consensus Gulf War
Illness Research Strategic Plan recommended by the RAC and NRAC, prior
to unilateral VA staff revisions.
15) A provision mandating the continuation in perpetuity of the
``Gulf War Review'' and related quarterly veteran-oriented publications
for veterans of other eras, which should include ongoing, clear updates
free of ``strategic health risk communication'' minimization, on each
newly concluding federally funded research study, and each benefits
change relevant to the target population.
16) Provisions to correct injustices in the ratings for
fibromyalgia and chronic fatigue.
17) Provisions strengthening the authority of the present Research
Advisory Committee on Gulf War Veterans' Illnesses.
18) Provisions that repeal and replace portions of Presidential
Review Directive-5/National Science and Technology Council (PRD-5/
NSTC), and subsequent programs and governing regulations, including:
a) Provisions related to the use of investigational drugs and
products on military service members.
b) Provisions related to health risk communication.
c) Provisions related to interagency applied research program on
health risk communication for military members, veterans, and their
families.
d) Provisions related to electronic communications with state and
community public health departments to disseminate health risk
information to veterans and their families through local public health
infrastructure.
e) Provisions related to training local public health officials on
the use of essential information technologies to disseminate and
receive health risk information from veterans and their families.
f) Repeal and replace the Military and Veterans Health Coordinating
Board (MVHCB).
19) A provision requiring the consistent federal government use of
a term for ``Gulf War Illness''.
B. Finally, as a group of 14 Gulf War veteran advocates has
previously recommended, Congress should immediately develop and ensure
the enactment of legislation to:
1) Reauthorize the expired provisions of the Gulf War Acts of 1998
[Persian Gulf War Veterans Act of 1998 (Title XVI, PL 105-277); Title I
of the Veterans Programs Enhancement Act of 1998 (PL 105-368)]
2) Provisions that explicitly and directly grant exposure-based
service-connection presumptions to known, suspected, or plausible Gulf
War exposures including:
a. Sarin (GB)
b. Cyclosarin (GF)
c. Sulfur Mustard (HD)
d. Tabun (GA)
e. Lewisite (L)
f. Soman (GD)
g. VX nerve agent
h. Particulates (PM2.5: sub-2.5 micrometer in size, which are
respirable and too small to be removed by the lungs' natural
exfoliating processes)
i. Pyridostigmine Bromide (PB) nerve agent protective pills (NAPP)
j. Anthrax vaccine
k. Multiple vaccinations
l. Depleted Uranium (DU)
m. Chemical pesticides
3) A provision that grants exposure-based service-connection
presumptions for exposures in (2) above for all U.S. servicemembers who
served anywhere in the Southwest Asia theater of operations (38 CFR
3.317) or were awarded the Southwest Asia Service Medal (32 CFR 578.27)
for service between January 16, 1991 and the end of 1991. (Note: last
oil well fire put out ``by November'' 1991).
4) Require VA to contract with the Institute of Medicine of the
National Academy of Sciences to identify a comprehensive listing of
health conditions and symptoms, including chronic and delayed onset,
which are associated in humans or animals with exposure to acute,
subacute, and low levels for each of the named exposures in (2) above
and explicitly and directly require VA to include each of these
conditions as presumptives for Gulf War veterans as described in (3)
above. The review should be explicitly required to include data from a
comprehensive review of the medical literature, and to also include:
a. 1993 IOM report on WWII veteran Mustard/Lewisite experimentation
survivors;
b. Medical literature assessing long-term health effects of the
cohort of Iranian mustard-exposed veterans of the 1980-88 Iran-Iraq
War;
c. Classified and unclassified published and unpublished research
by the federal government, federal contractors, and federally funded
entities into acute and long- term health effects of even low levels of
the above named exposures;
d. Animal studies.
5) Ensure the perpetuity, without expiration, of adding new
presumptive conditions as described in (4) above as they become
identified by medical research.
6) Expand the definition of the Southwest Asia theater of
operations, for purposes of all VA benefits including healthcare, to
include service qualifying for the award of the Southwest Asia Service
Medal.
7) Establish permanent eligibility by law for Priority Group 6 VA
healthcare for veterans who have been awarded the Southwest Asia
Service Medal.
8) Require DOD to monitor, develop and retain accurate and detailed
records regarding future troop hazardous exposures.
i p. 14, Dusek, Jeffery, PowerPoint presentation: ``Chronic
Stress and Its Role in Emotional, Somatic, and Cognitive Symptoms'';
Presented at Meeting 2: Institute of Medicine Committee on Gulf War and
Health: Treatment of Chronic Multisymptom Illness, Feb. 29, 2012.
ii Golier, JA et al, ``Twenty-four hour plasma cortisol and
adrenocorticotropic hormone in Gulf War veterans: relationships to
posttraumatic stress disorder and health symptoms. Biol Psychiatry 2007
Nov 15; 62(10):117t-8. Epub 2007 Jul 5.
iii Walters, Terry, Office of Public Health, U.S. Department of
Veterans Affairs: ``Institute of Medicine Committee on Gulf War and
Health: Treatments for Multi-Symptom Illness,'' a PowerPoint
presentation before the Institute of Medicine, Committee on Gulf War
and Health: Treatment of Chronic Multisymptom Illness, Dec. 12, 2011,
pp. 37-40. Retrieved from the Internet 3/10/13: http://www.iom.edu/
Activities/Veterans/GulfWarMultisymptom/2011-DEC-12.aspx
Prepared Statement of Victoria J. Davey, Ph.D., MPH, RN
Good morning, Mr. Chairman, Madam Ranking Member, and Members of
the Subcommittee. Thank you for the opportunity to discuss the
Department of Veterans Affairs' (VA) efforts to identify, diagnose, and
treat Gulf War-era Veterans. I am accompanied today by Dr. Maureen
McCarthy, Deputy Chief Patient Care Services Office, Dr. Stephen Hunt,
Persian Gulf Registry Physician, and Dr. Gavin West, Physician, Salt
Lake City VA medical center (VAMC).
VA focuses on all eras of Veterans and recognizes unique aspects of
service associated with each era. In 2009, Secretary Shinseki
established a Gulf War Veterans Illnesses Task Force (Task Force),
headed by VA's Chief of Staff (COS), a Gulf War Veteran. The Task
Force's mission is to ensure that VA maintains a focus on the unique
needs of Gulf War Veterans. It was chartered to conduct a comprehensive
review of VA's programs to support this population of Veterans; develop
an overarching action plan to advance service to them; and ultimately
to improve their satisfaction with the quality of services and support
VA provides. The Task Force has prepared three annual reports detailing
concrete steps VA has taken, and continues to take, to improve care and
services to Gulf War Veterans. The Secretary and COS believe that
ultimately, the Task Force's efforts must become a part of the culture
and ongoing operations of VA?and not simply the purview of a special
Task Force.
At this time, Mr. Chairman, I would like to focus on the efforts
the Veterans Health Administration has made in response to both the
guidance of the Task Force and the needs of Gulf War Veterans, to
improve their health and well-being.
VA is proud to offer continuing treatment as well as evaluation of
the nearly 700,000 men and women who served in Operations Desert Shield
and Desert Storm. My purpose today is to communicate the personalized
and compassionate care that VA strives to deliver to fulfill the unique
needs of the men and women who served in these Operations.
Many Gulf War Veterans are affected by a debilitating cluster of
medically unexplained chronic symptoms that can include fatigue,
headaches, joint pain, indigestion, insomnia, dizziness, respiratory
disorders, and memory problems.
These symptoms can wax and wane, and may have lasted since
deployment in some Veterans. Unfortunately, we yet do not know the
cause, but a complex combination of environmental hazards, exposures,
and individual genetic characteristics may be behind these symptoms. We
refer to the illness that these Veterans describe as chronic
multisymptom illness or `CMI'.
Terminology like `CMI' helps us define the populations of concern,
plan treatments, and drive research. However, VA's fundamental approach
to health care has evolved over the first decade of the 21st century.
We believe the person, not the disease or the terminology, is the
center of importance in the health care relationship. We want to meet
the patient where he or she is in life, and develop with the patient a
health plan of care that returns the patient to his or her highest
possible level of health and enjoyment of life. As with every other
Veteran, VA seeks to provide Veterans with CMI personalized, proactive,
patient-driven care. As part of our services to Gulf War Veterans, VA
offers a number of programs and services that are uniquely designed to
meet their needs.
VA facilities throughout the Nation are working on bold, innovative
programs that combine primary care and specialty care services. One
such program links primary care services with specialty medical
treatment models specific to Gulf War Veterans, in order to produce a
seamless, patient-centric model that will improve patient care, safety,
and satisfaction, as well as provider knowledge. This program is
creating a system of care, which leverages VA's Patient-Aligned Care
Team (PACT) concept. Through PACT, providers and staff members from
multiple disciplines, outlooks, and experiences work together to
provide the best possible care. Patients and family members are
considered part of their own PACT.
VA has linked PACT teams working with Gulf War Veterans with a
specialty care capability that focuses on treating the unique health
care requirements of Gulf War Veterans. The program includes teaching
aids, referral networks, and other types of collaboration. Front-line
clinicians have been educated through monthly community of practices
conference calls, informational meetings, pocket cards, and Web sites.
The meetings are led by clinicians trained in issues specifically
related to the integration of primary and specialty care.
Facilities involved in the program have seen improvement in their
recent customer service scores; an improvement that has been
corroborated in VA-led focus groups. VA is currently preparing a social
media campaign to improve feedback on the program from Veterans, to
keep Veterans involved in the progress of the program, and to allow
Gulf War Veterans served by the program to communicate more easily.
VA providers being trained in clinical issues related to the Gulf
War include family medicine and internal medicine doctors in training,
nurse practitioner students, and those intending to become physician
assistants. Many practitioners at participating VA hospitals and
Community-Based Outpatient Clinics (CBOC) have noted a substantial
increase in their knowledge about Gulf War Veterans issues, and have
found it significantly easier to find information they require about
the subject. Veterans have also noted that clinicians involved in the
program are now more knowledgeable about their issues.
Another program specifically for Gulf War Veterans is our registry
program, begun by VA in August 1992. The program offers a health
examination at any of our health care facilities to any Veteran with
Gulf War service. To date, about 130,000 Gulf War Veterans have
undergone a registry exam, allowing their health concerns to be
evaluated by VA physicians, and enabling them to be referred for
additional care when needed. The comprehensive health exam includes an
exposure and medical history, laboratory tests, and a physical exam. VA
health professionals discuss the results face-to-face with Veterans and
in a follow-up letter.
Since 2001, the War Related Illness and Injury Study Centers
(WRIISC) have supported specialized care for Gulf War Veterans, and
conducted cutting-edge research, clinician education, and a Veteran
referral program. VA's three WRIISC locations have teams of clinicians
ready to evaluate Gulf War Veterans with deployment-related concerns.
Based on a comprehensive evaluation, the WRIISC team develops an
individual, holistic treatment plan for Veterans with CMI or other ill-
defined conditions, through a referral process based on geographic
location.
Primary care physicians throughout VHA contact the WRIISC to refer
Veterans to one of the three regional centers, using the consult
process in VA's computerized patient record system. VA recently
developed this streamlined specific interfacility consult for the
Veteran's integrated team to use to seek help from the WRIISC for
consultation and development of a coordinated treatment plan.
The WRIISC is not the only way in which the special needs of Gulf
War Veterans are met throughout VA's health care system. VA conducts
special educational programs for health care providers, Veterans, and
their families. These include in-person training sessions, webinars,
Web sites, and publications for both patients and providers on topics
including assessments of environmental exposure and difficult-to-
diagnose conditions.
VHA's Office of Public Health (OPH) holds quarterly conference
calls with Environmental Health coordinators and clinicians located at
every VA hospital. These coordinators and clinicians are subject matter
experts for Veterans and VA staff, offering advice on environmental
exposure experience during military service. The conference calls
provide coordinators and clinicians with ongoing training, allowing
them to share patient care questions, challenges, administrative
issues, and solutions that have come up at their facilities and provide
an opportunity to discuss the latest information on environmental
health.
Recently, OPH developed an Environmental Exposure pocket card that
includes questions for practitioners to ask Veterans about their health
concerns, including those related to Gulf War deployments. It also
provides contacts Veterans can use to obtain information about
additional VA resources and benefits to which they may be entitled. The
card is available at http://www.publichealth.va.gov/docs/exposures/
environmental-exposure-pocket-card.pdf.
VA now is in the process of developing additional innovative
training resources, such as a mobile device and internet application
that will provide real-time information on environmental exposures,
associated symptoms and conditions, and potential treatments beneficial
for clinicians in treating these Veterans.
Mr. Chairman, in accordance with Public Law 105-277, VA contracts
with the National Academy of Sciences to independently examine and
evaluate the medical and scientific literature regarding illnesses and
deployment in support of the Gulf War. Since 2000, the Academy's
Institute of Medicine (IOM) has provided its scientific conclusions on
the strength of the evidence for associations between such exposures
and illness. VA uses IOM's reports to help inform policy decisions
regarding whether certain diseases or illnesses, called presumptive
diseases, are related to qualifying military service.
VA recently engaged IOM to convene a committee to comprehensively
review, evaluate, and summarize the available scientific and medical
literature regarding the best treatments for CMI among Gulf War
Veterans.
On January 23, 2013, IOM released a study containing
recommendations to VA on how to recognize and treat Gulf War Veterans
with CMI. IOM based
its recommendations on a review of 47 existing studies. IOM
provided a working definition of CMI, as ``the presence of a spectrum
of chronic symptoms'' in at least two of six categories, including
fatigue; mood and cognition (such as memory difficulties);
musculoskeletal; gastrointestinal, respiratory, and neurologic issues.
IOM indicated that the symptoms of conditions that are already defined,
such as chronic fatigue syndrome; fibromyalgia; functional
gastrointestinal disorders; In addition, co-morbid conditions, such as
depression and anxiety, may overlap those of CMI.
IOM made recommendations to VA in five categories, including how
to: treat CMI; improve systems of care and management of care for
Veterans with CMI; provide information throughout VHA about care for
Veterans with CMI; improve the collection and quality of data on care
outcomes and satisfaction with care for Veterans who have CMI; and how
to conduct future research on diagnosing and treating CMI and on
evaluating programs to treat the illness.
VA welcomes this opportunity to address these recommendations in an
effort to improve how we meet the clinical needs and expectations of
Gulf War Veterans. VA shares IOM's concern that Veterans experiencing
CMI be managed compassionately and that they experience personalized,
proactive, patient-driven care specific to their needs. Actions that we
already are taking include a pilot program to provide every Veteran
with a full health assessment when he or she separates from service.
This is a combined VA-DoD separation health assessment. The Secretaries
of Defense and Veterans Affairs acknowledged their commitment to full
implementation of a universal, standardized separation health
assessment for all transitioning Servicemembers (SMs) was supported
through the resources of both DoD and VA in December 2012. Currently,
VA and DoD representatives are drafting the memorandum of agreement
(MOA) which will be ready for coordination by end of March 2013. The
MOA will formally establish roles, responsibilities, standard exam
criteria, and monitoring requirements. DoD and VA staff have been
meeting weekly to discuss implementation options along with the
drafting of the MOA. A pilot is taking place at the Washington, DC VAMC
to test the processes related to performing the standardized health
assessment elements as part of a VA disability exam in support of a
claim for benefits.;
Moreover, other actions include VA's addition of a clinical
reminder to its computerized patient record system to prompt clinicians
to ask all Gulf War separating Servicemembers whether they may have
symptoms consistent with CMI; and the special PACT program for Gulf War
Veterans described previously in this testimony. We are improving
communication among VA health care providers and with patients;
improving patient satisfaction measurement tools, and training our
staff to better recognize CMI. We are also developing a champions
program and additional webinars, and taking steps to strengthen
research protocols submitted for funding in complementary and
alternative medicine.
IOM notes in its report that the impacts of CMI are wide-ranging,
and extend far beyond the health of individual Veterans. CMI has
personal, occupational, and social consequences that impact not only
Veterans and their families but also their employers and the
communities in which they live. VA understands this. We remain
committed to providing evidence-based, compassionate care for these
Veterans, and for all of the Veterans it is our privilege to serve. VA
intends to continue our ongoing efforts to improve our abilities to
provide health care for Gulf War Veterans; to better educate our health
care providers; and to expand the evidence basis for the treatments we
provide for Gulf War Veterans, and all Veterans.
Mr. Chairman, this concludes my testimony. We appreciate the
opportunity to appear before you today to discuss this important issue.
My colleagues and I are prepared to answer your questions.
Statement For The Record
Statement by Melissa A. Forsythe, PhD, RN, Program Manager for Gulf War
Illness Research Program, United States Army Medical Research and
Materiel Command
Chairman Coffman, Ranking Member Kirkpatrick, distinguished Members
of the Subcommittee; I thank you for the opportunity to provide this
testimony on behalf of the Department of Defense (DoD) Gulf War Illness
Research Program. This program studies the multi-symptom cluster known
as Gulf War Illness (GWI) that afflicts as many as 250,000 of the
750,000 service members and Veterans who served in the Persian Gulf War
theatre of operations during 1990 and 1991.
Overview of DoD GWI Research Funding
DoD-funded GWI research began in 1994 with the establishment of a
Gulf War Veterans' Illnesses Research Program (GWVIRP) to study the
health effects on the service members deployed in the 1990-1991 Persian
Gulf War. From Fiscal Year (FY) 1994 to FY 2005, the GWVIRP was managed
by the US Army Medical Research and Materiel Command (USAMRMC) Military
Operational Medicine Research Program (MOMRP). Research pertaining to
GWI also has been funded intermittently through the Congressionally
Directed Medical Research Programs' (CDMRP) Peer Reviewed Medical
Research Program (PRMRP) that supports selected military health-related
research topics each fiscal year.
The MOMRP shared management responsibility for the GWVIRP with the
CDMRP in FY 06 with separate $5 million (M) appropriations. Although
the GWVIRP, renamed the Gulf War Illness Research Program (GWIRP), did
not receive funding in FY 2007, a $10M appropriation renewed the
program in FY 2008 to be managed fully by the CDMRP. Since that time,
the GWIRP has been maintained with $8M appropriations in FY 2009, FY
2010, and FY 2011. The FY 2012 GWIRP appropriation was $10M. The
program's mission is to ``Improve the health and lives of Veterans who
have Gulf War Illness.'' Thus, the program supports innovative,
competitive peer-reviewed research for treatments that address the
complexity of symptoms comprising GWI, identify objective markers
(biomarkers) for the disease, and understand the pathobiology
underlying GWI.
CDMRP GWIRP Processes
As with all CDMRP-managed programs, the GWIRP program management
cycle includes a two-tier review process for application evaluation
recommended by the National Academy of Sciences' Institute of Medicine.
The first tier of evaluation is an external scientific peer review of
applications against established criteria for determining scientific
merit. This review is conducted by scientific and clinician experts in
Gulf War Illness with input from consumers - veterans suffering from
GWI.
The second tier is a programmatic review conducted by an
Integration Panel (IP) composed of program-specific researchers,
clinicians, and consumers who evaluate applications on innovation,
potential impact, programmatic priorities, and mechanism specific
criteria. The IP is composed of prominent members of the GWI research
community, including Gulf War consumers. The IP coordinates with the
Office of Research and Development within the Department of Veterans
Affairs (VA) to ensure there is no overlap of funding and that
portfolios are complementary.
The IP recommends applications for funding that best fulfill the
program's vision and mission while also demonstrating innovative
science. The recommendations of IP members enable the GWIRP to find and
fund cutting-edge research and set important program priorities to
benefit ill Gulf War Veterans. The Commanding General of USAMRMC issues
final approval for funding prior to award negotiations and execution.
The Role of Veterans as Consumers
A unique aspect of the CDMRP is the active participation of
consumer advocates throughout the program. Consumers for the GWIRP are
Gulf War Veterans who are experiencing symptoms and illnesses related
to their military service in the 1990-1991 Persian Gulf War theater.
Consumer advocates are a vital part of all CDMRP programs in that they
express the collective views of survivors, patients, family members,
and those affected by the disease. They sit side by side with research
professionals on both peer and programmatic review panels, they vote as
equal members of these panels, and their voices play a pivotal role in
maintaining an appropriate focus within the program.
CDMRP GWIRP Portfolio
The GWIRP has focused on the development of treatments to address
the myriad of symptoms that plague ill Gulf War Veterans. To that end,
the GWIRP has offered Clinical Trial Awards (CTAs), Innovative
Treatment Evaluation Awards (ITEAs), and Investigator-Initiated
Research Awards (IIRAs) that support pilot studies and larger, more
definitive clinical trials to investigate potential treatments for GWI.
To date, the GWIRP has funded 3 CTAs ($3.6M), 5 ITEAs ($3.1M), and
39 IIRAs ($29M). Of these, 13 awards are focused on developing
treatments, 15 are pursuing biomarkers, 8 are examining symptoms, and 6
are investigating exposures, while others are conducting basic research
related to Gulf War Illness. Examples of these funded awards include
the following:
a. IIRAs: (1) Beatrice Golomb, M.D., Ph.D., University of
California, San Diego recently completed a 3=-year study (FY 2006 IIRA)
examining the benefits of daily coenzyme Q10 (Q10) in ill Gulf War
Veterans. Q10 is naturally produced in the human body where it is
involved in cellular energy production as a key antioxidant. But,
levels of Q10 can be inadequate to meet needs when there is increased
``oxidative stress'' or impaired energy production. Dr. Golomb
hypothesized that mitochondrial dysfunction, linked to cellular energy
production, may contribute to symptoms of GWI and sought to assess
whether Q10 conferred benefit to overall health and symptoms in GWI.
Initial analysis of the study results found that the 100 mg dose
led to better self-rated health scores than the 300 mg treatment. More
importantly, fatigue with exertion, which 54% (25) of subjects reported
at baseline, demonstrated significant improvement with Q10 at 100 mg
compared to placebo treatment. The benefit to fatigue with exertion is
important because increased exercise tolerance is a bridge to many
health benefits (e.g., mood, function, and cognitive performance) as
well as quality of life benefits crucial to ill Gulf War Veterans.
These findings provide important preliminary information that could
inform a larger trial of Q10 better powered to show benefit to global
health in ill Gulf War Veterans.
(2) Dr. Ronald Bach at the VA Medical Center in Minneapolis (VAMC
Minneapolis) is using a FY 2008 GWIRP IIRA to further develop findings
from VA-funded studies that indicated that ill Gulf War Veterans may be
in a hyper-coaguable state of unknown etiology \1\. Earlier work showed
strong correlations between the plasma concentrations of inflammation-
related proteins and symptoms of GWI. Thus, he hypothesized that
chronic inflammation is part of GWI pathophysiology.
---------------------------------------------------------------------------
\1\ Hannan KL. Berg DE. Baumzweiger W. Harrison HH. Berg LH.
Ramirez R. Nichols D. Activation of the coagulation system in Gulf War
Illness: a potential pathophysiologic link with chronic fatigue
syndrome, a laboratory approach to diagnosis. Blood Coagulation and
Fibrinolysis. 11(7): 673-678, 2000.
---------------------------------------------------------------------------
Analyses determined that C-reactive protein (CRP) levels, a marker
of systemic inflammation, were significantly higher in Gulf War
Veterans with three symptoms (as defined in health surveys) versus
asymptomatic veterans. Dr. Bach subsequently observed statistically
significant linear correlations between CRP and a group of 18 plasma
proteins. This set of pro-inflammatory potential GWI biomarkers has
been labeled ``The Gulf War Proteome'', though more in-depth analysis
is pending.
b. ITEAs: (1) Dr. Ashok Tuteja of the Western Institute for
Biomedical Research, is using a FY 2009 ITEA to study irritable bowel
syndrome (IBS) resulting from gastroenteritis commonly found in ill
Gulf War Veterans. Dr. Tuteja is examining the potential of pro-biotic
treatment (live bacteria that re-establish normal gut flora) to improve
GWI-associated IBS, fatigue, joint pain, and headaches in a clinical
trial of 80 Gulf War Veterans. This study is on-going.
(2) Dr. David Rabago of the University of Wisconsin, Madison, is
using a FY 2010 ITEA to examine the effectiveness of routine nasal care
plus saline or xylitol nasal irrigation compared to routine care alone
as therapy for chronic rhino sinusitis and fatigue in 75 ill Gulf War
Veterans. Study outcomes will gauge responses to surveys and assess the
cost-effectiveness of the treatment. Dr. Rabago will also examine pro-
inflammatory cytokine markers and cell types in the mucosal profile to
elucidate biomarkers of the condition. This study is on-going.
The Way Forward
Since its inception at CDMRP in FY 2006, the GWIRP has served as a
spring-board for GWI Research, identifying and developing a community
of researchers and clinicians dedicated to pursuing robust research.
The quality of applications submitted to the GWIRP has increased from
overall scientific merit scores averaging 3.0 (on a scale of 1.0 to
5.0, with 1.0 representing a `perfect' application) in FY 2006, to
scores of 1.9 on average in FY 12. While quality has improved
significantly, the quantity of awards made has not, given the available
appropriations. In FY 2012, the GWIRP funded 13% of applications.
In FY 2010, the GWIRP took a bold step by offering a Consortium
Development Award (CDA). This award provided $200,000 over one year for
researchers to create a Coordinating Center and to establish the
necessary collaborations at potential research sites to develop a
multi-institutional GWI research effort.
The CDA supported experts from differing fields of GWI, and helped
to bring their consolidated efforts to bear toward moving research
forward, finding new treatments, developing biomarkers, and improving
our understanding of GWI. Three CDAs were awarded, all of which scored
very high on scientific merit, and also addressed a different focus of
GWI.
In FY 2012, these three CDA awardees competed for a full Consortium
Award. Two of the three were selected for initial funding ($2.5M each),
with the additional funds (again, $2.5M each) to be awarded as an
option from FY 2014 funds, depending on the availability of funds and
the progress of each consortium toward accomplishing its specific
goals. While both of these awards are under negotiations, they are
poised to propel the field of GWI research beyond what could be
accomplished by individual researchers' efforts.
In addition to the Consortium Award, in FY 2012 the GWIRP again
offered the Investigator-Initiated Research Award, Clinical Trial
Award, and the Innovative Treatment Evaluation Award established in FY
2009. These awards will add to the growing portfolio of GWIRP-funded,
high-impact research designed to help our ill Gulf War Veterans.
From David K. Winnett, Jr.
Dear Chairman Miller and Distinguished Members of the Committee,
Today, almost twenty-two years after the 1991 Persian Gulf War
(PGW) more than 250,000 Veterans of that war continue to suffer from
very debilitating medical symptoms directly related to their wartime
service.
As a four-time ``Consumer Reviewer'' panelist on the
``Congressionally Directed Medical Research Programs'' (CDMRP) for Gulf
War Illness Research, the consensus among the scientific and medical
communities now points to the strong likelihood that PGW Veterans
sustained neurological damage to the part of the brain that regulates
the autonomic nervous system. This seems a quite viable explanation
given the myriad of symptoms that have destroyed the quality of life
for so many PGW Veterans and their families. Unfortunately, researchers
who for years have valiantly searched for effective treatments for the
numerous symptoms associated with Gulf War Illness have been greatly
handicapped by not knowing precisely what caused these illnesses.
Today there are many thousands of documents that remain classified
concerning events that occurred before, during, and after the PGW.
Former Senator Donald Riegle's 1994 report on Gulf War Illness made
public a number of disturbing revelations concerning weapons
technologies that were authorized for sale by the United States
government to the Iraqis during the late 1980's. The Senator's report
inferred that some of those same weapons technologies, chemical and
biological weapons among them, may have been the cause of Gulf War
Illness. His report also recommended a Justice Department investigation
into these questionable weapons sales to Iraq; an investigation that
the Justice Department has never deemed important enough to pursue.
Not surprisingly, compelling evidence to explain Gulf War Illness
now points to confirmed widespread battlefield exposures to chemical
warfare agents, including Sarin Gas that were inadvertently released
into the atmosphere by pre-ground war American/Allied aerial bombing of
Iraqi ammo storage areas within the theater of operations, and/or
administration of medicines (i.e., Pyridostigmine Bromide pills) that
were prescribed to all ground forces, despite the fact that at the time
they were not yet FDA approved, and/or tainted vaccinations - i.e.,
excessive Squalene utilized in the adjuvant (booster) of mandatory
vaccines administered to our troops without their informed consent.
Also suspect as a possible cause of Gulf War Illness, now referred
to as ``Chronic Multisymptom Illness'' was widespread ingestion of
micro-particulates of post-impact Depleted Uranium (DU), a heavy
weapons technology first used on a large scale during the 1991 PGW.
Despite the fact that DU has been proven by DOD and others to cause
extremely long-term environmental damage as well as posing considerable
health risks to anyone exposed to it, DU is still in use in America's
arsenal today. Perhaps that might explain why many of today's Warriors
are coming home with symptoms eerily similar to Gulf War Illness?
There is little dispute now that Gulf War Illnesses are real, but
for reasons that continue to confound the Veteran community, the
majority of Persian Gulf War Veterans who have submitted claims for
Veterans disability compensation related to their wartime service have
had their claims denied. This prevents the chronically ill Veteran from
receiving financial compensation that would help to offset their loss
of earning capacity and denies them the priority medical care status
that the VA extends to Veterans with service-connected disabilities.
The disenfranchisement of the over 250,000 men and women who
carried out one of the most effective military operations in our
country's history is a tragedy of the highest order. These are American
heroes whose life-altering chronic medical problems have been largely
ignored by their fellow countrymen for over twenty years, a human
tragedy far beyond anything that I am aware of in our country's history
where American War Veterans are concerned.
Despite numerous setbacks that our Persian Gulf War Veteran
community has experienced over the last two decades, I remain extremely
confident that sooner or later, the truth will be known. The question I
have for the Chairman, and for the Honorable Members of your Committee
is - which side of history will you be on? Will you choose the side
that the vast majority of our Colonels, Generals, and the Politicians
who presided over the Persian Gulf War have chosen? Like them, will you
remain loyally silent to your last breath - will you sleep soundly at
night under the morally misguided perception that ``matters of national
security'' or the release of ``sensitive information'' trumps the
health and welfare of America's sick Gulf War Veterans? Like them will
you be deafened to the cries for help that continue to echo from the
battlefield - pleas for help from the same brave and selfless Warriors
who did the dirty work that made so many of our Generals overnight
celebrities? Like them, will you continue to turn your back on this
magnificent group of American heroes who carried out one of the most
resounding wartime victories in our country's history? Or, will you be
on the side of moral justice - the side that advocates for complete
truth and transparency, no matter its cost, when it comes to once and
for all declassifying and disclosing the precise reason(s) why so many
Persian Gulf War Veterans fell ill after the war, no matter whose
military or political legacies may suffer, and no matter the potential
for embarrassment and/or civil liability that certain defense
contractors may face?
I am very close to completing a book that describes what I believe
to be the largest disenfranchisement of American military personnel in
the history of this country. The working title of the book is ``To
Fight for Right and Freedom'' (A Marine Corps ``Mustang's'' battle with
Gulf War Illness, and the War Machine that created it). The book, now
over 400 pages in length does not paint a kind picture of those within
our government and defense establishment whom I believe to be complicit
in this unconscionable act of betrayal against our troops. I've paid an
enormous personal price as a direct result of my public outspokenness
over this often controversial issue, the details of which are
explicitly outlined in my book. But there is no penalty that anyone can
possibly levy on me that will succeed in deterring me from continuing
to exercise the moral leadership that I was so blessed to assimilate as
a United States Marine. This mission will be accomplished, and I plan
to be around when that day comes. I very much hope to see you all
there.
And so, in closing I would respectfully ask only two things from
each of you when it comes to making decisions about how best to deal
with the issue of Gulf War Illnesses - and they are, BE HONEST and DO
THE HONORABLE THING. Do what you were elected to do - represent the
interests of the American citizens; the citizen Warriors who put their
lives on the line twenty-two years ago, serving you, so that you could
one day have the privilege of serving them. So please, serve them. They
may not have paid for your political campaigns, but they have paid
dearly for your freedoms. It is up to each of you to decide which holds
the most value.
It's been twenty-two years. That's quite long enough. Too many have
died, too many have suffered with constant pain, profound fatigue, and
other debilitating symptoms too numerous to list. More importantly, far
too many continue to have their disability claims denied by the
Department of Veterans Affairs, despite voluminous regulations that
your honorable body created; laws that were supposed to give the
benefit of the doubt (``Presumption of service connection) to the
symptomatic Persian Gulf War Veteran. With great respect, please trust
me; by in large the very laws (the Direct Orders!) that you issued to
the VA to take care of these Veterans are being summarily ignored at
the vast majority of VA Regional Offices across this country. That is
beyond unconscionable.
History is watching.
Very Respectfully,
David K. Winnett, Jr.
Captain, United States Marine Corps (Retired)
100% Disabled Persian Gulf War Veteran
Chris Thomas, Summary of My Case History with the Veteran's
Administration
In 1991 and 1993, I served with the 3rd Armored Cavalry
Regiment in the Persian Gulf region. Between May and December of 1993
he was gassed and shelled in combat with my regiment. Military records
support this point and have been undisputed in claims made to the VARO.
I was discharged from active duty service in 1996. I
began service in the reserves from 1996 to 2000. I suffered chronic
kidney problems (stones, other) during the years leading up to my
discharge from the reserves.
October 13, 2008 I suffered an episode of anaphylaxis
resulting severe respiratory distress. I had to be rushed by ambulance
to the Skyline Medical Center where I was intubated. This experience is
consistent with my claim that symptoms of Parasympathetic Autonomic
Dysfunction (PAD) began in 2008.
I was diagnosed on December 4, 2008 by Dr. Zia, a private
practice neurologist in Bowling Green, with Parasympathetic Autonomic
Dysfunction (ANS/ALS & neuro condition) by my neurologist and began
losing feeling in my feet and legs. DRO Chuck Tate dismissed this
diagnosis because he thinks Zia practices in a rural market and doesn't
have the skills of physicians in a university setting. Zia is a Boston
University and Harvard Medical School graduate. Dr. Zia performs over
300 tilt table tests annually to determine Parasympathetic Autonomic
Dysfunction. Dr. Smith (VA neurologist) also rejected Zia's diagnosis.
November, 2008 I was hospitalized for migraine and
tremor.
December, 2008 I was hospitalized for chest pain.
April, 2009 I required surgical removal of grossly
enlarged axillary lymph nodes.
May, 2009 Dr. Diana Cavanaugh, Allergist with Graves-
Gilbert Clinic writes a letter opining that the anaphylactic episodes,
joint pain, migraines, tremor, lymphadenopathy and chest pain symptoms
must have some underlying cause which can link all of these symptoms
together.
June 6, 2009 I took the Gulf War Registry exam which was
not a complete physical. Examiner didn't review my registry paperwork.
My claim was denied.
August 15, 2009 I was diagnosed by (Dr. Dewey Dunn) VAMC
Nashville as having (a) mild restrictive lung disease; (b) migrane
headache disorder; (c) multiple arthralgias of unknown etiology and (d)
irritable bowel syndrome. Yet the DRO said I did not have lung disease
and IBS in his denial of my claims for assistance.
March 3, 2010 was the first scheduled appointment with
Dr. DeMuth as the primary care physician.
April 21, 2010 While an inpatient at VAMC, Dr. Hatfield
(VA Gastroenterologist) indicated to me that Irritable Bowel Syndrome
(IBS) is secondary to PAD.
May, 2010 After losing nutrition and fluid and
experiencing vomiting for several over two weeks, I was admitted as an
inpatient at VAMC. I went through multisystem failure and was on the
verge of coding and was transferred to Jewish Hospital from May 14-18,
2011. Medical staff at Jewish said my bowels were dying. Dr. Hatfield
explained to me that Gulf War Syndrome degrades your bowels/stomach
because they are part of your auto immune system. He said serin attacks
every phase of your auto immune system.
June 3, 2010 Dr. Ron Stattenberg, VA Radiologist
conducted a MRI of my brain and reported evidence of chronic small
vessel ischemic change. Small vessel ischemic change is consistent with
stroke, hypertension, migraines or other medical conditions. I have a
history of these symptoms.
July 6th, 2010 Dr. Ramirez, Infections Disease physician
with VAMC Louisville diagnosed me with radiation poisoning. Dr. Smith,
Neurologist stopped the proposed medications to treat the radiation
poisoning so Ginko Balboa or fish oil was proposed as an over the
counter medication. This treatment was discontinued shortly due to
adverse gastrointestinal side effects. Smith's nurse told me `Nothing
is wrong with you.' Again Dr. Smith rejects another physician's
diagnosis as he did with when he rejected Dr. Zia's diagnosis of
Parasympathetic Autonomic Dysfunction.
June through late 2010, I was treated at Southern
Kentucky Rehab Hospital where I was treated for physical therapy,
speech therapy and occupational therapy. My inability to perform basic
exercises is well documented by qualified therapists. My
musculoskeletal functions progressively worsened and pain increased
over those months. Rehab care was discontinued the hospital for fear
that lack of progress would threaten the reimbursement of costs for
such care.
Early 2011, My condition worsened. I frequently
experienced swelling and inability to urinate. Weakness in the left
side of his body worsened and I experienced tremors frequently. No
cohesive plan of care was established so I reached out to Congressman
Guthrie to do something to get the VAMC to take me seriously and
develop a cohesive plan of care to make me better.
In late Spring 2011, Mark Lord from Guthrie's staff
secured a meeting with Louisville VAMC leadership including Director
Pfeffer, Chief of Staff Marylee Rothschild, VAMC legal counsel and risk
management staff. Rothschild debated my claims about a lack of diligent
care and the risk management person pressed that I was not compliant
with efforts to seek PTSD treatment. Mr. Lord made the point that his
anxiety will be dramatically reduced if his medical needs will be
treated diligently. Director Pfeffer brought up the prospect of sending
Ito the War Related Injury and Illness Center because he said they are
the specialists for these types of cases.
August 2011, I went to the WRIISC in Washington, DC. It
was a major disappointment. What was described as a specialty center to
treat war related injuries of an obscure nature like GWI turned out to
be a research facility with very little treatment capacity. The bottom
line was I came home with a diagnosis of low testosterone and a big bag
of vitamins. I also came home very sick and hurting from the MRI's
which heated up the shrapnel in my body.
Six weeks passed and no one from WRIISC and the VAMC nor
primary care were talking with each other. So I got Congressman
Guthrie's staff to press them to take action. Congressman Guthrie got
wrote a letter on my behalf complaining about the poor continuity of
care associated with my case.
In November of 2011, my health is worsening under the
care of the VA. Dr. Ramirez and Dr. Peyrani, Infectious Disease
physicians in the VA described me as having progressive neurological
symptoms and multiorgan dysfunction affecting the heart, brain,
kidneys, bone marrow, peripheral nerves and the immune system.
As my condition worsened under the VA, the care providers
did not demonstrate appropriate diligence in carrying out a treatment
plan for me. My first appointment to discuss the recommendations from
the WRIISC did not going to happen until February of 2012 which would
have been six months from my discharge from the WRIISC. Fortunately,
with Congressman Guthrie's help it was moved up to November.
The continuity of care with my case was very poor given
the acuity of my symptoms. My primary care physician, Dr. DeMuth, was
not communicating well with specialists involved in my care. Other than
one consultation with WRIISC physician, Dr. Li, DeMuth did not have
consultations with the specialists involved in my care. He relied only
on case notes. Given my involved and worsening condition, more
diligence should reasonably be expected.
DeMuth did not communicate adequately with me. DeMuth
told me that he would complete the referral for me to see a
cardiologist and an urologist for the severe symptoms that I was
experiencing. Instead of completing the referral he put in for tests to
take place weeks later that would qualify me to see the specialists.
DeMuth also prescribed tests that would expose me to high levels of
radiation that could be potentially harmful to a patient with probable
radiation poisoning, yet did not consult with me and did not take my
phone calls about the matter days before the procedure was to be done.
In late 2011, DeMuth began sending vitamins and drugs to me without
consultation about the purpose of them. DeMuth even went so far as to
demand that I sign a contract with him limiting the number of medical
concerns that I can talk to him about at two concerns per visit. The
contract also limited the amount of his time that I could have in a
patient visit.
Through late 2011, VAMC leadership was not advocating any
material change in the way I was treated. Upon my desperate request for
help Congressman Guthrie's, sent a letter to Director Pfeffer and Chief
of Staff Rothschild outlining these concerns. The response from Chief
Rothschild was that the care I was receiving was completely within
their standard of care and that this office ``should let doctors be
doctors.'' Her only recommendation was to designate a nurse on DeMuth's
staff as a case manager and encourage DeMuth to spend 30 minute visits
with me rather than the customary 15 minutes typically provided. This
seems ironic that she advocated letting the doctors be doctors yet nine
months ago their plan was to get me into the care of the WRIISC because
the appropriate expertise was not sufficient in this VA region to care
for me adequately.
There is apparently no defined protocol to treat veterans
with symptoms of radiation poisoning or biological/chemical combat
exposures.
Meanwhile, I pleaded desperately for the opportunity to
see a specialist for the symptoms that I was experiencing. I have grown
increasingly angry at the VA system for not treating my combat injuries
and for treating me as though my symptoms are fiction. I acknowledged
that I am 100% PTSD disabled and I am willing to get treatment. But I
want my physical symptoms to be taken credibly so I can get care that
is consistent with private health care providers outside the VA system.
In late 2011, I felt that I didn't not have long to live.
As a former critical care nurse at the Vanderbilt Hospital, I know that
untreated atrial fibrillation of the heart, the chronic kidney
dysfunction and weakened immune system can easily lead to death
rapidly. This and numerous other symptoms combined to degrade my
quality of life.
In early 2012, we seemed to have exhausted all options at
the Louisville VAMC level with no good reason to expect improvement in
my care. So Congressman Guthrie's staff escalated my complaint to VISN
9 Director Dandridge conceded to move my care outside the VA to private
physicians.
Currently, I am making some progress now but my
physicians have almost no experience treating the patients with
exposures to bio/chem agents or radiation poisoning. Reimbursements
from the VA are chronically slow pay which makes them want to drop me
as a patient. Likewise, there have been frequent battles with the VA
pharmacy to get the meds filled the way the doctors want them filled.
From Kirk P. Love
Dear OI subcommittee
My name is Kirt P. Love. I served in the 1990 Persian Gulf War as a
generator mechanic with 141 Single Battalion attached to VII Corp. Our
unit deployed from Germany in November 1990 and left in April 1991.
I got deathly ill in 1993 and the system failed me. Filed for VA
benefits in 1994 that turned into a nightmare battle heading to my 2002
meeting with Sec Principi's staff after my BVA hearing. Have been 60%
rated since 2002. It should not have taken a meeting with the VA
Secretaries staff after 8 years of fighting with VA to make it happen.
Since 1997 I've run a survey and website advocating Gulf War
veterans. By 1999 I attended regular meetings with the Pentagon with 33
other advocacy groups over our concerns. By 2002 the Pentagon shut down
outreach with the GWI community and put the whole show in VA's hands.
The Research Advisory Committee was formed about that time but only
specialized in research.
By 2005 healthcare and benefits issues were moot as only the RAC
had any Congressional mandate or interest. The Gulf War Registry as
well as any other GW Programs had floundered badly. The only venue for
us to replace the defunct Gulf War Referral centers was the War Related
Illness and Injury Study Centers. There however were one time visits
provided you could get a referral from your primary care physician. My
own health struggled as I kept defying the system such as getting
multiple referrals to the WRIISC that did not allow it. No matter what
I did from the days of the Gulf War Illness referral centers, to the
WRIISC, and so on - I could not get answers or long term help.
Conditions that were acute in the 90's have progressed to chronic
in the present while VA's answer to me is ``we don't know'' or worse.
By 2008 I managed to get a VA Gulf War Illness Advisory Committee
through the system with Rep. Chet Edwards help. But, VA sabotaged the
committee with ringers since it wasn't a chartered Congressional
committee and the chairman pushed hard to wrap it up early even if the
final report was thin. In the end the committee did not do the job it
should have and I disputed the final report as putting Dr. Stephen Hunt
in charge of the show. The visit in Seattle had shown me he was running
a psyche clinic railroading vets through that did not want to return.
They called it the PDICI and over time shifted the focus to a different
term to the PACT but same focus. Mental health rather than physical
evidence.
VA snowballed our committee and did not want to provide any hard
line information during our tenure. The only statistical reporting
system at that time was the GWVIS which had become more and more
erratic. I discovered a variance in the data in which they had been
showing a 10% drop in the overall numbers of those filing for benefits.
This lead to a subcommittee to look into the numerical error, and lead
to the change to the GWVIS into the pre911 report. However, VA decided
to do one report and then mothball it since it wasn't under any
mandate.
Our committee was made promises by VA of such things as the Gulf
War Review being published 2 to 3 times a year. They published only one
in July 2010 following our disbanding and produced none since then.
They followed our committee up with the Gulf War Illness Task
Force. Complete with annual reports and a public comments website. The
first year they completely left out the public comments and the second
year they edited them for content rather than included verbatim. Only
to find later the committee was deaf to input, and operated in secret
with no public meetings or even basics like blog or website to show
there meetings. In effect this private internal committee became the
end all be all that did not have to interact with the public or
actually acknowledge outside interest in our own plight.
VA tried to parade its newest incarnation the Gulf War Veterans'
Illnesses Biorepository in January as if it was a positive thing.
Except, I was there in 2006 when we pushed for the Gulf War Brain Bank
as a tissue repository to replace the defunct AFIP that did not
cooperate with researchers as it should have. The brain bank languished
from lack of support. It changed hands, became the ALS repository in
Tucson AZ. Then changed hands again under Dr. Neil Kowall, M.D who
later confirmed in 2010 before the RAC they had not collected one
sample. In 2012 he confided with the RAC the GWVIB only has 2 years of
funding. They gave no reference in 2012 of collected samples. So far to
date all they have is the brain of Wade George.
I can go into much greater detail with 17 years of email and
correspondence with a large plethora of folks all around all this. But,
long story short at each stage that I try to get my own answers I find
more and more bureaucracy that thwarts my attempts to find answers to
my question of what went wrong 22 years ago in the Gulf War. From the
reclassification of 6 million records from the war to the continued
efforts of VA to push GW vets into psychiatry rather than cutting edge
research. Now we have the most resent insult wherein the IOM's volume 9
report on Multisymptom Illness takes a total departure from the content
of its former Volume 8 report which had been more realistic. Why? The
results might have been coached by VA for a less happy agenda?
A current realistic attempt would be the effort to have 100 GW
veterans genomes sequenced and look at the total genome for answer asto
any defective gaps that might answer current medical mythos on cause.
The ''Gulf War Genome Project'' would finally put to bed the debate
over physical cause if it finds anomalies that surface in regularity
outside the general population.
But, having done this type of work for 17 years now I've learned
its better to be brief with Congressional committees or risk being
ignored. In short, if we financed a genomic study we can put all this
to rest and head towards ``diagnoses/treatment'' with real possible
results. All else is treacle as the genome is the final answer in
medical research circles. A tangible goal with a real future. Granted
long term.
Asto the rest, VA has for 22 years mishandled Gulf War Medical
Research and any possible treatment trials of value. It cannot govern
itself and should be stripped of any authoritative position concerning
Gulf War vets. They should no longer receive funding for GW IOM
projects as neither the IOM nor VA can be objective of such. There
should be PERMANENT over sight in place with VA over any future Gulf
War Illness concerns as veterans have suffered long enough at there
hands. The GWVITF should be disbanded since it only serves VA
internally as a tool of elderly agendas that do not fit current medical
theology. In short, you can't leave the child in charge of the cookie
jar.
Sincerely
Kirt P. Love
Director, DSBR
Former member VA ACGWV
From Beatrice A. Golomb, MD, Ph.D.
I. It is a mistake to group together GWI with other chronic
multisymptom conditions.
Multiple chronic symptoms can be seen in numerous conditions, from
hypothyroidism to vitamin D deficiency to mitochondriopathy. For each
of these, the constellation of symptoms might be viewed as not
``distinct.'' The same symptoms commonly reported at elevated rates in
each such condition are also present at lower levels in people without
these conditions (and also at elevated levels, in people with the
others of these conditions), and no specific symptom is either required
or pathognomonic.
In these cases, the conditions are potentially distinguishable
because ultimately the mechanism involved was ascertained and tests
became available. (Moreover, it is the case that some of these
``chronic'' conditions can cease to be chronic when the cause is
identified and leads to a definitive treatment.) However, this has not
always been the case, and indeed, it has not been the case for all that
long historically.
The constellation of symptoms in GWI may be seen in many other
conditions - such as the conditions cited, hypothyroidism to vitamin D
deficiency to mitochondriopathy. For each of these (as for GWI), the
constellation of symptoms might also be viewed as not ``distinct.'' The
same symptoms commonly reported at elevated rates in each such
condition are also present at lower levels in people without these
conditions (and also at elevated levels, in people with the others of
these conditions), and no specific symptom is either required or
pathognomonic. In these cases, the conditions are potentially
distinguishable because ultimately the mechanism involved was
ascertained and tests are available; however, this has not always been
the case, and indeed, it has not been the case for all that long
historically.
There are specific environmentally induced versions of these
conditions: radioactivity induced hypothyroidism; bariatric surgery
induced vitamin D deficiency; medication-induced mitochondriopathy. If
tests were not yet available, there would have remained strong utility
in grouping persons with these elevated multisymptom health problems in
the context of their common exposure setting, in order to facilitate
research to enable these distinct conditions and their foundations to
be ultimately elucidated and understood.
It is true that some treatments may provide some benefit, taking
the edge of the impact of chronic multiple symptoms (and for that
matter, many diagnosed conditions), irrespective of the mechanism that
produced the chronic symptoms - coping mechanisms, gentle exercise,
addressing the anxiety that may arise from health problems. But
grouping GWI together with other chronic multisymptom conditions has
potential to do a terrible disservice to those affected. It may retard
or extinguish prospects for identifying mechanisms and providing
treatments that are so urgently needed by these veterans. Many who
served in the Persian Gulf are affected by disabling symptoms, and
these problems arose as a consequence of service to their nation. It is
possible that their conditions need not remain chronic, if the
mechanism is identified and addressed. That should be the goal in GWI.
II. It is a mistake to group these with war-related multisymptom
conditions
While unquestionably, health conditions have arisen in association
with many prior conflicts, it should be recognized that a range of
factors, differing in profile, will have contributed in different
conflicts: malnutrition, dehydration and electrolyte imbalance (from
diarrheal illness), trenchfoot, malaria, brucellosis, parasitic
illness, etc have all affected health of military personnel in
different deployments. Many of these (and many other conditions) can
produce fatigue and CNS symptoms, and some can engender a broader set
of symptoms, commonly in the short term, providing a reminder that
common symptoms can arise in different conflicts from different causes
with different optimal treatments. More relevant than the existence of
symptoms that are features of many conditions, and that have therefore
not surprisingly occurred also with prior wartime conditions, is that
GWI embodies characteristics that distinguish it from other post-war
conflicts. In any case, the existence of features common to many health
conditions does not imply the health conditions are the same or are
optimally managed in the same fashion.
Conditions that are prominent in veterans of recent conflicts are
PTSD, TBI, and GWV: These can be conceptualized as resulting from
psychic stress, mechanical brain injury, and environmental/chemical
injury respectively. While some symptoms (and even some downstream
pathways) may be in common, separate means for protection from these
conditions, and separate study to understand mechanisms are in order -
and separate or minimally, stratified treatment trials. Treatment with
thyroid hormone - though a definitive treatment for hypothyroidism -
may not show up as conferring significantly beneficial, if persons with
hypothyroidism are combined with persons with numerous other causes of
multisymtom illness, diluting the effect. Equally troubling, a
treatment may be effective due to benefit in a subgroup, and
demonstration of effectiveness, if the groups are conceptualized as one
entity, may lead a treatment effective in one group to be inflicted on
another group in which it is ineffective or harmful.
For these reasons, it remains desirable to retain conditions with
distinct proximal causes, nonidentical mechanisms, and possibly very
distinct optimal treatments as distinct, even if some mitigating
treatments test as being helpful for several or all of them.
It may ultimately prove to be the case that common causes and
mechanisms are involved in some instances of chronic multisymptom
health problems in veterans of subsequent deployments, in nondeployed
veterans, and in civilians. But it is preserving the group with a
common corpus of exposures that provides the greatest chances of
ultimately identifying the foundations of this condition, and helping
not only Gulf War veterans, but others who have developed similar
problems from related exposures.
III. GWV are disadvantaged in screening and referrals
Presently, veterans with GWI seen at the VA are the forgotten
stepsisters among veterans with chronic problems. While there are
mechanisms in place for screening and referral for TBI and PTSD, no
such approaches are in place for GWI. Many VA physicians, nurses, and
scientists are not even aware that GWI differs from PTSD, because no
formal training occurs about GWI for those who join the VA. Physicians
who have been at the VA for a long time received mandated training
about GWI that implied they were not ill or it was basically all in
their heads. (This was not a conclusion that could be drawn from
evidence even at the time; and copious subsequent evidence has refuted
this position.)
Physicians that have been at the VA for a shorter time have had no
formal required training on GWI, so have no reason to be aware of a
difference from PTSD. This is compounded by the fact that the VA has
chosen to define and label as Gulf War veterans not only those deployed
in 1990-1, but all deployed to the region from 1990 onward. This also
precludes meaningful use of VA databases to track health problems and
outcomes separately in Gulf War veterans.
GWV with chronic multisymptom problems are often not treated with
compassion they deserve. Physicians unfamiliar with their issues, and
with limited time, may have little patience for their multiple
problems, not understanding that these arose from military exposures.
One Gulf War veteran in a high paying job requiring excellent skills
who developed new onset weakness with no known cause, read the RAC
report and became familiar with evidence on Gulf War illness. He
reasonably was concerned that his Gulf War experience might relate to
his problems. He presumed that VA physicians would be knowledgable and
went to the local VA. He was seen by a neurologist there who told him
categorically that he did not believe in Gulf War illness. (The patient
shared with me that he cried.) The neurologist told him he only
believed in real diagnoses, and so labeled him with a different
diagnosis, despite acknowledging that the test results were not
consistent with that diagnosis. In frustration, that veteran actually
chose to fly to another city to get primary care from a physician who
had some knowledge about GWI.
IV. Outside referrals
In principle there are referral approaches for veterans with Gulf
War illness that can allow them to undergo more comprehensive
evaluation and management at a war related illness center. In practice,
there are no meaningful (controlled or randomized) data to say if these
centers provide benefit (though, at least patients may feel their
problems are receiving attention). Additionally, many VA physicians are
not aware that there is an option to refer to these centers, and this
option may in practice be limited both by restricted capacity of these
centers (there are just a few, not geographically distributed) and the
requirement that the local VA cover any costs to fly the patient to the
center, which the VA may decline due to fiscal considerations
(providing selective access to those who are geographically close).
Questions For The Record
Letter From: Hon. Michael H. Michaud, Minority Ranking Member,
Committee on Veterans' Affairs, To: The Hon. Eric K. Shinseki,
Secretary, U.S. Department of Veterans Affairs
March 20, 2013
The Honorable Eric K. Shinseki
Secretary
U.S. Department of Veterans Affairs
810 Vermont Avenue, NW
Washington, DC 20420
Dear Mr. Secretary:
In reference to our Full Committee hearing entitled, Gulf War: What
Kind of Care are Veterans Receiving 20 Years Later? that took place on
March 13, 2013, I would appreciate it if you would answer the enclosed
hearing questions by the close of business on May 1, 2013.
In preparing your answers to these questions, please provide your
answers consecutively and single-spaced and include the full text of
the question you are addressing in bold font. To facilitate the
printing of the hearing record, please e-mail your response in a Word
Document, to Carol Murray at [email protected] by the close
of business on May 1, 2013. If you have any questions please contact
her at 202-225-9756.
Sincerely,
MICHAEL H. MICHAUD
Ranking Member
CW:cm
Questions From: Committee on Veterans' Affairs, To: U.S. Department of
Veterans Affairs
Submitted by Ranking Member Kirkpatrick
1. The War Related Illness and Injury Study Centers, or WRIISCs
seem to be popular among the Gulf War veterans and receive high marks.
We have heard from the first panel that there is a waiting list to get
in to the centers.
a. Is there a waiting list and if there is how long is it?
b. What process does VA have in place to get data from the WRIISCs
and other programs to measure outcomes to determine whether the
programs have been successfully implemented and is improving care?
c. Should we expand access to the WRIISCs?
2. Please tell the Committee about the National Health Study of a
New Generation of US Veterans.
a. How many veterans were involved?
b. How much did VA spend on the study?
c. Have the results been released? If they have, what did they tell
us? If they have not, when will they be released?
d. How is VA going to use the findings of the study?
3. According to your testimony VA seeks to provide veterans with
CMI, personalized, proactive, patient-driven care.
a. What challenges has VA faced in implementing this care?
b. Are the Patient-Aligned Care Teams staffed and if not when do
you think they will be?
c. How long has VA been linking PACT teams working with Gulf War
veterans with a specialty care capability?
4. Please elaborate on the social media campaign VA is engaging in
to improve feedback on the program to veterans?
a. How is VA ensuring that Gulf War veterans served by the program
can communicate more easily?
5. I understand that about 130,000 Gulf War veterans have undergone
a registry exam. However, the IOM has reported that VA does a poor job
of gathering data.
a. How is VA gathering and aggregating data, so that it is useful,
in the bigger picture to the treatment and care of Gulf War veterans?
6. We all know how important research is. In April 2012 the
Committee received the Annual Report to Congress on Federally Sponsored
Research on Gulf War Veterans' Illnesses for 2011 mandated by Congress.
According to the report this is the eighteenth report on Federal
research and research activities. There are many projects listed in the
report. The report is 112 pages long. The report talks about VA
creating a Gulf War Research Strategic Plan to map the direction of
research for the next five years.
a. Where is VA in reaching that goal? Do you have a timeline?
b. Have stakeholders, like the first panel, been brought in to help
VA with the strategic plan? If not, why not?
7. The IOM had 14 recommendations, yet, reading your testimony VA
seems to have all the bases covered and everything is fine. I think the
first panel may disagree. Please elaborate on the Office of Public
Health and the quarterly conference calls with Environmental health
coordinators and clinicians located at every VA hospital.
a. How long have the quarterly calls been going on?
b. Are there minutes kept of the calls that are shared with
interested parties and stakeholders? If not, why not?
c. What kind of policy and procedures actually are products of
these calls that benefit veterans?
8. In testimony you state that VA is now in the process of
developing additional innovative training resources such as a mobile
device and internet applications. After 22 years, this seems a bit late
to just now be developing applications for the environmental exposures,
symptoms and conditions.
a. When did the process begin? When do you think it will be rolled
out to veterans who may find it helpful?
9. I find it hard to believe and disappointing that VA is
testifying that they are just now adding a clinical reminder to the
computerized patient record system to prompt clinicians to ask all Gulf
War separating servicemembers whether they may have symptoms consistent
with CMI. I am sure you would agree this is long overdue and is a
disservice to the men and women who have served in the Gulf.
a. How are you improving communication among VA health care
providers and with patients concerning CMI?
b. What do you mean when you say you are improving training to
staff to better recognize CMI?
c. How are you measuring whether this training is effective or not?
Questions and Responses From: U.S. Department of Veterans Affairs, To:
Committee on Veterans' Affairs
Submitted by Ranking Member Kirkpatrick
1. The War Related Illness and Injury Study Centers, or WRIISCs
seem to be popular among the Gulf War veterans and receive high marks.
We have heard from the first panel that there is a waiting list to get
in to the centers.
a. Is there a waiting list and if there is how long is it?
Response: Each War Related Illness and Injury Study Center (WRIISC)
site offers a suite of clinical services based on the complexity of the
medical needs of the individual Veteran. These range from a
comprehensive, in-person multi-day evaluation to more focused
evaluations. Multi-day evaluations may take up to five days and involve
as many as ten clinicians. Each site manages referrals made through the
electronic medical record independently. The amount of time between the
consult request and the determination of eligibility and
appropriateness varies on a case-by-case basis due to Veteran and
referring provider responsiveness to requests for essential information
and completion of preliminary tests at the referring site. The WRIISCs
proactively communicate with both referred Veterans and their providers
to ensure questions are resolved as quickly as possible. Each WRIISC
may have approximately six Veterans who are awaiting an appointment as
the details of their referral are refined and timing of the appointment
is agreed upon with the Veteran. Once eligibility and appropriateness
for comprehensive WRIISC examinations are determined, the average wait
is four months to obtain a comprehensive inpatient evaluation. Urgent
cases are evaluated sooner. Waiting times are less for Veterans seen on
an outpatient basis. While there is currently a waiting list for
appointments, the length of these waits is decreasing due to filling
staff vacancies at the WRIISCs, streamlining the intake process, and
working more closely with referring providers to ensure the
completeness and appropriateness of each consult. We anticipate that
these wait times will continue to decrease through these efforts and
through additional ongoing efforts to provide referring clinicians with
the information they need to handle more of these cases such as a train
the trainer pilot for post deployment health champions.
b. What process does VA have in place to get data from the WRIISCs
and other programs to measure outcomes to determine whether the
programs have been successfully implemented and is improving care?
Response: Each WRIISC site engages in ongoing quality improvement
processes, including evaluation of clinical services and patient and
provider feedback. WRIISCs systematically collect patient satisfaction
data at the completion of the in-person comprehensive evaluation and
elicit referring provider feedback. Results of these surveys
consistently indicate overall patient satisfaction with their visit at
over 95 percent. In addition, WRIISCs conduct follow-up calls with
Veterans after their in-person evaluation to assess implementation of
the recommendations and to problem solve barriers to that
implementation. The WRIISCs are currently developing a strategic plan
that will incorporate objective measures of outcomes. OPH is
establishing a formal and regular review process of the WRIISC
activities to provide oversight and guidance of WRIISC performance.
WRIISC personnel regularly use their clinical experience and
research findings to educate VA, DoD, and other providers as well as
the Veteran community. The WRIISCs regularly host conferences,
webinars, and other opportunities for continuing education. WRIISC
Veteran and provider educational activities promote greater
appreciation of the impact of deployment on health and greater
knowledge on how best to address and manage deployment health concerns
(e.g., CA WRIISC sponsored a conference in July 2012 entitled ``Gulf
War Illnesses: What Providers Need to Know'').
Finally, WRIISCs have a track record of publishing research based
on the clinical experience in peer-reviewed journals (e.g., the Journal
of Occupational and Environmental Medicine's special issue on Health
Hazards of deployment to Iraq and Afghanistan published in 2012). These
publications provide information about WRIISC evaluations and Veterans
seen, and provide evidence that the data collected and the results
obtained regarding symptoms and exposure concerns stand up to the
scrutiny of review by other medical and scientific experts.
c. Should we expand access to the WRIISCs?
Response: The best way to expand access to high quality of care
modeled by the WRIISCs is to take what the WRIISCs have learned from
providing clinical care to Veterans with the most serious and
debilitating deployment health concerns, especially First Gulf War
Veterans, and disseminating it to other VA providers through clinical
consultation and educational activities. The WRIISCs already partner
with colleagues from VHA (including Patient Aligned Care Teams (PACT),
Veteran Service Organizations (VSO), Veterans Benefit Administration,
(VBA), academia, and DoD) to expand the reach of educational and
clinical care activities nationally. Strategic expansion that leverages
these existing collaborations is an appropriate approach towards
expanding Veterans access to high quality post-deployment health care.
The three parts of the WRIISC mission: clinical care, research, and
education, interact to allow the advancement of the knowledge and
expertise necessary to improve the lives of Veterans. For example,
Veterans are invited to participate in research protocols, and, in
return, Veterans benefit from the application of innovative approaches
to diagnosis and treatment (e.g., all three sites have programs and
research activities promoting and evaluating Complementary and
Alternative Medicine (CAM) practices to aid in the management of
chronic symptoms). Similarly, the WRIISC clinical experience is
leveraged to create educational products and training events to
disseminate knowledge and best practices to providers in the field.
This experience and knowledge is translated into educational products
for Veterans and their families.
2. Please tell the Committee about the National Health Study of a
New Generation of US Veterans.
a. How many veterans were involved?
Response: The VA Post-Deployment Health Epidemiology Program (EP)
conducted the ``National Health Study for a New Generation of U.S.
Veterans.'' Thirty thousand Operation Enduring Freedom/Operation Iraqi
Freedom (OEF/OIF) Veterans and thirty thousand Veterans who served
elsewhere during the same time period were invited to participate.
Surveys were sent to 60,000 Veterans. In total, 20,563 Veterans
provided complete surveys (11,337 OEF/OIF Veterans and 9,226 Veterans
who served elsewhere during the same period). The participants for the
health survey were selected from Veterans who served in each of these
cohorts from the onset of the conflict in October 2001 through June
2008, and the survey was conducted from August 2009 to January 2011.
The survey used postal, Web-based, and telephone administered surveys
to collect self-reported health information from deployed and non-
deployed Veterans concerning their chronic medical conditions, history
of traumatic brain injury (TBI), Post-traumatic Stress Disorder (PTSD)
and other psychological conditions, general health perceptions,
reproductive health, pregnancy outcomes, functional status, health care
utilization, and behavioral risk factors. Results from the study will
be prepared for publication in the peer-reviewed scientific literature.
The response to 2.c. below provides additional detail about topics that
will be examined over the next 12 months. Five papers from the Study
have been submitted to peer reviewed journals; data for an additional
three papers are being analyzed; and an additional six studies are
being planned.
b. How much did VA spend on the study?
Response: VA contracted the logistical support and implementation
of the survey to a Service Disabled Veteran Owned Small Business. The
value of the contract was just under $5 million.
c. Have the results been released? If they have, what did they tell
us? If they have not, when will they be released?
Response: The study is still ongoing. There are a number of planned
studies as well as an initial pilot to test incentives to improve
overall response rate.
Articles on the following topics are in preparation for submission
to peer-reviewed journals or have been submitted:
Goals for the next five months:
The National Health Study for a New Generation of United
States Veterans: Methods for a Large-Scale Study on the Health of
Recent Veterans - in preparation
Adjustments for Temporal Misclassification of Exposure
Status in Surveys of Health Outcomes - submitted
Prevalence of Respiratory Diseases among Veterans of OEF
and OIF: Results from the National Health Study for a New Generation of
U.S. Veterans - submitted
Goals greater than 5 months:
History of infertility among men and women Veterans:
underlying causes, medical evaluation, and outcomes - in preparation
Population Prevalence Estimates of Screening Positive for
TBI and PTSD: Results from the ``National Health Study for a New
Generation of U.S. Veterans'' - in preparation
Prevalence of functional health measures, illness, and
military exposures - in preparation
Respiratory disease and associated risk factors - in
preparation
The relationship of TBI/PTSD to self report of suicidal
ideation - in preparation
Use of Complementary and Alternative Medicine (CAM)
modalities - in preparation
Self reported birth defects among OEF/OIF era Veterans -
in preparation
Health risk behaviors: Smoking and alcohol rates - in
preparation
HIV risk taking behaviors among OIF/OIF Veterans - in
preparation
Self reported risky driving behaviors and health behavior
correlates - in preparation
The initial pilot (noted above) included a test on the use of
incentives to encourage greater response rate because previous VA
studies have suffered from low response rates, raising concerns about
the generalizability of the findings. This test was recommended by the
Office of Management and Budget to assess the effect of small monetary
incentives in improving response and decreasing non-response bias. The
results showed that a small pre-paid monetary incentive significantly
increased participation rates. This was important to test as no data
were available regarding the acceptability and success of using
incentives in research with Veterans, and these results have been
published in the journal, Survey Practice (2011).
One study assessed the prevalence estimates of TBI and PTSD. The
results were presented in a poster presentation at the 2012 National
Meeting of the International Society for Traumatic Stress Studies,
November 2, 2012, in Los Angeles, CA.
Main findings:
Population prevalence estimates (screening):
possible TBI among deployed =15.7% vs. possible TBI among
non-deployed = 8.9%.
possible PTSD among deployed =15.7% vs. possible PTSD
among non-deployed = 10.9%.
possible TBI & PTSD among deployed =7.7% vs. possible TBI
& PTSD among non-deployed = 3.1%.
These figures are based on self-reports of illness based on
clinical visits. The positive TBI screening would suggest a referral to
second level TBI evaluation.
d. How is VA going to use the findings of the study?
Response: Results from the study will be used to inform VA
leadership, Congress, Veterans, healthcare providers, the public and
other stakeholders about the health and illness experience of the OEF/
OIF Veteran population. The information will be used by VA leadership
in the development of policy and provision of care.
3. According to your testimony VA seeks to provide veterans with
CMI, personalized, proactive, patient-driven care.
a. What challenges has VA faced in implementing this care?
Response: Effectively assessing and managing Chronic Multi-Symptom
Illness (CMI) is a challenge in any medical setting. The process of
ruling out the broad range of diagnosable diseases or specific
conditions that might be causing any particular symptom or cluster of
symptoms is the first step in the assessment and management of CMI.
Health care in the Veterans Health Administration (VHA) is widely
acknowledged to meet the highest standards in terms of disease
diagnosis and management. If a specific diagnosis cannot be established
to account for a symptom or cluster of symptoms, then a symptom-based
syndrome such as CMI must be considered. Avoiding redundancy in
repeated testing, assessments and empirical interventions, while being
ever vigilant for emerging diagnosable conditions that may be
contributing to the symptoms, requires a critical balance that is best
served by team-based care with continuity over time. The PACT model is
specifically designed to provide the type of patient centered, team
based, continuous, health oriented care recommended by the Institute of
Medicine (IOM) report and by the best practices described in the
literature for assessing and managing CMI. The challenges in
implementing personalized, proactive, patient driven care for Gulf War
(GW) Veterans with CMI are in many ways the same challenges involved in
the transformation to the PACT model: integrating services at all
levels within the VHA; creating high-functioning interdisciplinary
teams within our medical centers and clinics; educating and training
teams consistent with the new paradigm of care generally as well as
with respect to unique needs of specific cohorts of Veterans such as GW
Veterans with CMI; and monitoring care to ensure progress and fidelity
to the standards and practices established for PACT.
b. Are the Patient-Aligned Care Teams staffed and if not when do
you think they will be?
Response: National standards for staffing PACT have been developed.
Nationally staffing of PACTs meets the recommended levels. There is
local variation however, and not all teams currently have all the
support staff that is recommended. Overall staffing continues to
improve, and we are working with those sites that are lagging to
determine the barriers they are facing and how they can be alleviated.
Many aspects of PACT can be fully implemented regardless of staffing
and all sites that provide Primary Care in VHA are expected to use the
PACT model of care.
c. How long has VA been linking PACT teams working with Gulf War
veterans with a specialty care capability?
Response: Many of the principles and practices recommended by IOM
as well as by the clinical medical literature for optimally addressing
the concerns of individuals with CMI were in motion prior to the
implementation of PACT. The WRIISCs, the Gulf War Registry program, and
the Gulf War Veterans Health Initiative (VHI) were oriented toward
assessing the unique concerns of GW Veterans with undiagnosed symptoms.
The VBA Program establishing presumptive service connection for
undiagnosed conditions allowed for additional benefits and services for
GW Veterans with CMI. The importance of comprehensive assessments of
these, and of all, Veterans was served by the implementation of the
Primary Care-Mental Health Integration Program throughout VA beginning
in 2007, and the Post-Deployment Integrated Care Initiative (PDICI) in
2008. The latter built upon the work of the OEF/OIF/Operation New Dawn
(OND) Program and supported the development of the type of integrated
post-deployment care specifically mentioned in the IOM Report as the
recommended approach to caring for individuals with CMI. These efforts
served to strengthen the subsequent implementation of PACT, as these
approaches are all derived from a common set of clinical principles:
Veteran-centered, team-delivered, evidence-based, and health-oriented
care. The alignment of PDICI teams with PACT resulted in Post-
Deployment PACTs in many Centers, as well as an overall increased
emphasis on enhancing the quality of ``deployment health care'' in all
VHA facilities. This is being accomplished by broad based education of
VHA staff on issues such as Military Culture, Deployment Health
concerns (including CMI in GW Veterans), Military Service-related
environmental exposures, and Compensation and Pension/Benefits-related
to specific cohorts of Veterans (such as GW Veterans with CMI). The
evolution of this heightened awareness of deployment related health
concerns has components that relate to GWI Veterans specifically. These
enhancements of post-deployment care and the emphasis on ``PACT based
post-deployment care'' will serve not only our GW Veterans with CMI,
but all Veterans with deployment related health issues, as it is
important to remember that while CMI is much more common in GW Veterans
than in other combat Veteran cohorts, it is a phenomenon we see in
combat Veterans after all wars.
4. Please elaborate on the social media campaign VA is engaging in
to improve feedback on the program to veterans?
a. How is VA ensuring that Gulf War veterans served by the program
can communicate more easily?
Response: A multifaceted combination of traditional and new methods
enhance communication with VA and Gulf War Veterans. Over the last 22
years, VA produced 41 editions of its Gulf War Newsletter.
A new ``Gulf War Update'' format is being developed for wide
mailing and web posting. Examples of other communications include the
following:
Three versions of a Gulf War ``VA Cares'' poster to alert
GW Veterans to health care, benefits, and the registry program
A registry brochure in a print and online format
A comprehensive web page at http://
www.publichealth.va.gov/exposures, with substantial Gulf War-related
health information at http://www.publichealth.va.gov/exposures/gulfwar/
index.asp. This site has been improved by Veteran feedback.
Active updating of the web pages with findings and
reports, along with email subscriptions for web page updates as content
changes are made
Announcements via email and social media (Facebook and
Twitter) on content updates that include both news (such as the posting
of a report) and reminders about VA care (such as the availability of
the Gulf War Registry program or of certain resumptions). VA monitors
social media for comments and questions when Gulf War topics are posted
Solicitation of comments via the online tool UserVoice on
the annual VA's Gulf War Veterans' Illnesses Task Force Report. VA
reviews these comments for follow up and incorporates samples into the
final report
Interactive briefings at regular meetings VHA holds with
Veterans Service Groups
Response to media interviews and queries
A variety of clinical education materials and tools that
are made publicly available to Gulf War Veterans, including those that
will be usable on smartphones and tablets
As more Gulf War Veteran care is provided by patient-centered care
teams, there will be an emphasis on personalized and proactive care,
with attention to rapport between the Veteran and an identified,
interdisciplinary team of professionals. Care continuity will include
of routine outgoing communications and outreach to the Veteran,
including medication reconciliation and test notification, post-
discharge telephone follow-up, and care management and telehealth
around specific symptoms or clinical conditions. In addition,
communication will improve via self-help resources on MyHealtheVet and
other online platforms, secure messaging directly to each Veteran's
PACT team, and telephone service capabilities with a variety of
clinical resources. PACT based post-deployment care continues to
enhance communication with Gulf War Veterans in a number of ways.
First, the emphasis on personalized and proactive care in PACT is
critical for Veterans with CMI, and establishes rapport between the
Veteran and an identified, interdisciplinary team of professionals. The
identification of a specific team of individuals serving each Veteran
within PACT cannot be overestimated in promoting a smooth process of
communication and any necessary dialogue to ensure understanding of the
information by both patient and providers. Second, the overall goal of
excellent continuity in care for Veterans is further advanced by a
variety of routine outgoing communications and outreach to the Veteran,
including medication reconciliation and test notification, post-
discharge telephone follow-up, and care management and telehealth
around specific symptoms or clinical conditions. Finally, VHA has
established and is continuously improving multiple modalities of
communication to better serve the Veteran, including self-help
resources on MyHealtheVet and other online platforms, secure messaging
directly to each Veteran's PACT team, and telephone service
capabilities with a variety of clinical resources.
5. I understand that about 130,000 Gulf War veterans have undergone
a registry exam. However, the IOM has reported that VA does a poor job
of gathering data.
a. How is VA gathering and aggregating data, so that it is useful,
in the bigger picture to the treatment and care of Gulf War veterans?
Response: The Gulf War Registry Examination is an important part of
VA's commitment to the health care of Gulf War Veterans with
environmental health concerns. VA uses the registry program, in effect
since 1992, and data from other programs to obtain a comprehensive view
of Veterans' health. The registry examinations capture self-reported
symptoms and exposures and are used by VA researchers. In addition, to
ensure VA obtains a full representative estimate of health effects in
those who served in the Gulf War, VA continues to support and conduct
well-planned research studies, such as the Office of Public Health Gulf
War Veteran surveys.
VA realizes the importance of improving our health care system
through monitoring performance of new and existing efforts that address
the health care needs of Gulf War Veterans. VA agrees with IOM's
recommendations 8 through 11 on ``Improving Data Quality and
Collection'' in its ``Treatment for Chronic Multisymptom Illness''
report, and is developing plans to use all health care encounters, not
just registry data, in our process metrics. As most primary care
providers do not have extensive knowledge of the long-term health
effects of environmental toxins, VA is improving coordination between
PACT and the registry program Environmental Health Clinicians to ensure
Veterans have these concerns appropriately addressed in their overall
care plan.
6. We all know how important research is. In April 2012 the
Committee received the Annual Report to Congress on Federally Sponsored
Research on Gulf War Veterans' Illnesses for 2011 mandated by Congress.
According to the report this is the eighteenth report on Federal
research and research activities. There are many projects listed in the
report. The report is 112 pages long. The report talks about VA
creating a Gulf War Research Strategic Plan to map the direction of
research for the next five years.
a. Where is VA in reaching that goal? Do you have a timeline?
Response: The ``Gulf War Research Strategic Plan - 2013-2017'' was
approved in February 2013. It will be available on the VA Office of
Research and Development Web site very soon.
b. Have stakeholders, like the first panel, been brought in to help
VA with the strategic plan? If not, why not?
Response: The draft Gulf War Research Strategic Plan was discussed
in January 2012 at a meeting of the Research Advisory Committee on Gulf
War Veterans' Illnesses (RACGWVI). The RACGWVI and the National
Research Advisory Council (NRAC), who are stakeholders in the Gulf War
research program, provided recommendations which were incorporated into
the draft Strategic Plan. As discussed at the January 2012 meeting,
some sections were re-worded during VA review and concurrence to be
consistent with VA policy and statutory requirements.
7. The IOM had 14 recommendations, yet, reading your testimony VA
seems to have all the bases covered and everything is fine. I think the
first panel may disagree. Please elaborate on the Office of Public
Health and the quarterly conference calls with Environmental health
coordinators and clinicians located at every VA hospital.
a. How long have the quarterly calls been going on?
Response: They began about 1980 with discussions about
environmental exposure issues that predated the Gulf War.
b. Are there minutes kept of the calls that are shared with
interested parties and stakeholders? If not, why not?
Response: Minutes are kept for each quarterly Environmental Health
Quarterly Conference Call. Written transcripts of the quarterly calls
are kept on a SharePoint site that is available for all Environmental
Health providers. This allows information sharing, collaboration,
reference material for those providers. Each call typically covers a
wide variety of topics that span across multiple eras of Veterans with
many different communication needs. VA analyzes these needs by topic
and develops focused external outreach products based on these needs.
c. What kind of policy and procedures actually are products of
these calls that benefit veterans?
Response: Each environmental health registry program, such as the
Gulf War Registry, is documented in a VHA handbook to provide guidance
for field staff. The quarterly calls provide an opportunity for
dissemination of new policies and procedures to the field and to
receive questions and comments from the field. Comments and suggestions
from field staff are considered during handbook revisions and
development of education products supported by the Office of Public
Health. Through these processes, field staff has access to up-to-date
and relevant information to care for Veterans with environmental health
concerns. As an example, the recommendations in the 2013 IOM report
were discussed in detail during the March 2013 call. One hundred and
twenty-five call-in lines were required to support a large audience of
field staff. Briefly, the agenda included a welcome to new staff and
discussion of the IOM January 2013 report, Camp Lejeune health care law
and ATSDR studies, Agent Orange reports, the Shipboard Hazard and
Defense (SHAD) IOM study (currently in data collection phase), planning
for the Open Burn Pit Registry, and planning for a train-the-trainer
initiative.
8. In testimony you state that VA is now in the process of
developing additional innovative training resources such as a mobile
device and internet applications. After 22 years, this seems a bit late
to just now be developing applications for the environmental exposures,
symptoms and conditions.
a. When did the process begin? When do you think it will be rolled
out to veterans who may find it helpful?
Response: VA continues to maximize all available modes of training
to ensure staff is prepared to assist Veterans with GW health concerns.
Over the last 22 years, VA Office of Public Health products have
included face-to-face workshops and seminars, Veterans Health
Initiative (VHI) study guides, and VHA training letters. VA produced 41
editions of its Gulf War Newsletter, three versions of a Gulf War ``VA
CARES'' poster, including a 20th anniversary edition, VHI topics
include a ``Guide to Infectious Diseases of Southwest Asia'' and
``Guide to Gulf War Veterans' Health.'' Information on depleted uranium
includes a fact sheet and pocket card. In recent years, as technology
has evolved, we have focused our efforts on more Web-based products,
such as our comprehensive Webpage, http://www.publichealth.va.gov/
exposures, to allow for ease of access to pertinent information as it
becomes available. Currently, we are developing a Web and mobile
application that providers can use to access exposure-related
information during patient visits. Our concept is to offer the
application on multiple platforms, including smartphones, tablets, and
desktop computers, and although providers are our target audience, it
will be made publicly available for download so that the information is
available to anyone who might find it useful, such as Veterans, family
members of Veterans, and VSOs. We started this effort in January 2012
and expect that the application will be available for providers in the
field in calendar year 2014.
9. I find it hard to believe and disappointing that VA is
testifying that they are just now adding a clinical reminder to the
computerized patient record system to prompt clinicians to ask all Gulf
War separating service members whether they may have symptoms
consistent with CMI. I am sure you would agree this is long overdue and
is a disservice to the men and women who have served in the Gulf.
a. How are you improving communication among VA health care
providers and with patients concerning CMI?
Response: VA understands the critical importance of communication
between patients and their care teams to achieve positive health
outcomes. VA developed and provided specialized training on military
culture and the events related to the Gulf War to provide VHA staff a
common awareness of what Veterans have experienced to foster a shared
understanding. VHA has also provided seminars for field staff through
its WRIISC on chronic multisymptom illness, health risk communication,
and other deployment health related issues. In the last two years, the
WRIISCs have offered more than six nationally broadcasted webinars or
satellite broadcasts per year.
b. What do you mean when you say you are improving training to
staff to better recognize CMI?
Response: In some cases, a Veteran may be seen multiple times
before the entire constellation of symptoms develops to qualify as a
multisymptom illness. While a clinical reminder provides an additional
tool to prompt a screening evaluation, it is not clear how often this
screening should occur to ensure this illness is recognized. Therefore,
regardless of a clinical reminder, staff must be able to recognize
Veterans who develop chronic multisymptom illness each time a Veteran
presents for care. Recognizing CMI in the clinical environment is
challenging because the clinical presentation of CMI varies
considerably between patients. Many CMI symptoms are non-specific and
could be secondary to other common medical conditions. A lack of a
consensus definition of CMI and validated screening tools further adds
to the diagnostic difficulties in diagnosing CMI. Clinically this means
that providers must determine if a Veteran has CMI on a case-by-case
basis. VA's Post-Deployment Integrated Care Initiative and WRIISCs
continue to educate providers on these complex issues through webinars,
consultations, and seminars. A WRIISC webinar originally broadcast in
March 2012 remains available through the VA Talent Management System.
In addition, a pocket card with resource links was distributed to over
23,000 VA staff.
c. How are you measuring whether this training is effective or not?
Response: Process and outcome measures are used to determine
training effectiveness. As with all continuing medical education,
participants are required to complete program evaluations to receive
credit for their attendance. This evaluates if the training was
perceived by each provider to be effective and the potential impact on
the participant's practice. VA is working to incorporate more direct
measures of effectiveness such as a pre and post test evaluation
system. Measures of patient satisfaction for VA's Salt Lake City Gulf
War Clinic Pilot program were collected and these data are currently
being evaluated. Family medicine doctors in training, nurse
practitioner students, physicians' assistant students, and internal
medicine doctors in training have all noted significant improvement in
comfort with knowledge-base and ease in providing referrals to GW
Veterans. These results are part of an ongoing study which uses focus
groups and patient surveys. Through focus groups and surveys, staff in
outlying clinics have also noted an increase in knowledge and ease of
access of information regarding Gulf War clinical issues. Further
efforts to improve training for primary care providers include two
planned conferences designed to provide education for local trainers.
The planned Environmental Health train-the-trainer course will include
measures of pre-intervention knowledge and post-intervention knowledge.