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[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 
official version. Because electronic submissions are used to prepare 
both printed and electronic versions of the hearing record, the process 
of converting between various electronic formats may introduce 
unintentional errors or omissions. Such occurrences are inherent in the 
current publication process and should diminish as the process is 
further refined.

                            C O N T E N T S

                               __________

                             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.

                                 
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