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To: Cuiient anu foimei Nembeis of the Reseaich Auvisoiy Committee on uulf

Wai veteians Illnesses, fiienus of uulf Wai veteians in Congiess anu veteians
Seivice 0iganizations; uulf Wai veteians
Fiom: }im Binns, chaiiman, Reseaich Auvisoiy Committee on uulf Wai veteians
Illnesses
Subject: Paiting thoughts
Bate: Septembei Su, 2u14

Ny ueepest thanks foi youi seivice anu suppoit these many yeais. Togethei, we have
auvanceu science towaiu impioving the health of uulf Wai veteians, though not as fai
as any of us woulu have likeu. The uulf Wai Illness ieseaich piogiam at the BoB
Congiessionally Biiecteu Neuical Reseaich Piogiams holus gieat piomise foi futuie
success.

Last week, Secietaiy NcBonalu attenueu a meeting of the Committee, anu vA is
expecteu to announce shoitly open pioceuuies foi nominating new Committee
membeis -- the fiist signs in seveial yeais that vA leaueiship is listening to the
Committee. Bowevei, I leave the Committee giavely conceineu about the futuie of
uulf Wai illness ieseaich.

The same uay that the Secietaiy met with the Committee, vA staff iepeateuly
piesenteu misleauing ieseaich anu benefits infoimation to the gioup, infoimation
which will subsequently be iepoiteu to the scientific community. It is appaient that
staff aie moving full speeu aheau to continue the actions of the past thiee yeais to ie-
establish uiscieuiteu goveinment themes fiom the 199u's that uulf Wai veteians have
no special health pioblems anu that those they have may be psychiatiic.

Staff fiist iepoiteu on a new stuuy they have uone ieviewing uiagnoses in vA hospitals
since 2uu2 that shows uulf Wai veteians' health pioblems aie essentially no uiffeient
fiom veteians of the same eia who uiu not ueploy. They then iepoiteu on a new
suivey they conuucteu in uulf Wai veteians that shows iates of PTSB anu uepiession
at 21% anu 48%, a huge inciease ovei pievious stuuies, which have shown numbeis in
single uigits. Staff also saiu that vA iecognizes chionic multisymptom illness anu
unuiagnoseu illness as seivice-connecteu foi vA caie anu benefits. Anu in a piess
ielease announcing the Secietaiy's visit with the Committee, they wiote that
"|cjuiiently, neaily 8uu,uuu uulf Wai eia veteians aie ieceiving compensation
benefits foi seivice-connecteu issues."

All of these statements aie giossly misleauing. The fine piint on the uiagnoses stuuy
shows that 7S,uuu veteians who aiiiveu in theatei aftei Naich 1, 1991, (anu thus
ieceiveu the heaviest exposuies to oil well fiies anu to neive gas ieleaseu by the
uestiuction of the Khamisiyah ammunition uump,) weie excluueu fiom the stuuy foi
unexplaineu ieasons. Staff also uiu not say that uuiing the timefiame of the stuuy, vA
uoctois weie tiaineu that the health pioblems of uulf Wai veteians weie
psychosomatic: eg, "|Bjiscussing chionic illness with a uulf Wai veteian oi a woman
with silicone bieast implants is a uiffeient mattei fiom uiscussing it with the aveiage
patient." Inueeu, the tiaining taught that "|mjost uulf Wai veteians who come to vA
foi health caie . ieceive conventional uiagnoses anu tieatments. Nost have health
pioblems similai to those expeiienceu by veteians of othei eias."
http:www.va.govRAC-
uWvIuocsCommittee_BocumentsuWIanuBealthofuWveteians_RAC-
uWvIRepoit_2uu8.puf , at uocument page S14.
vA staff thus knew the outcome of the stuuy befoie they uiu it.

Regaiuing the suivey, staff faileu to say that the suivey was iepeateuly ciiticizeu by the
Committee befoie it went out because of its bias towaiu psychiatiic issues: "This
suivey is pioblematic both in what it incluues anu what it uoes not incluue. It incluues
lengthy questions in aieas of limiteu ielevance foi 1991 uulf Wai veteians (eg, moie
than 2 pages of questions on iecent stiessful events anu woiiies, . 17 questions to
assess PTSB) . |Butj |tjhe uiaft suivey instiument uoes not pioviue |the questionsj
foi assessment of uulf Wai illness. Noie than 21 yeais aftei Beseit Stoim, it is
unthinkable that the laigest national stuuy of uulf Wai veteians woulu not pioviue the
uata iequiieu to evaluate the signatuie pioblem of the 1991 uulf Wai."
http:www.va.govRAC-
uWvIuocsCommittee_BocumentsCommitteeBoc}une2u12.puf at uocument pages
SS-S6

Noi uiu staff iepoit that the vA senioi epiuemiologist who was piincipal investigatoi
of the suivey testifieu to Congiess that his supeiiois lieu to Secietaiy Shinseki's chief
of staff in oiuei to convince him to appiove the suivey without changes: "Ny
supeivisois also maue false statements in wiiting to the Chief of Staff. Foi example,
they falsely stateu that putting the stuuy on holu long enough to ievise the
questionnaiie woulu cost the uoveinment $1,uuu,uuu, uelay the stuuy foi a yeai oi
longei, anu potentially iesult in contiact uefault. None of this was tiue. But as a
iesult, the Chief of Staff oiueieu the suivey to pioceeu without the changes."
https:veteians.house.govwitness-testimonyui-steven-s-coughlin

Nost impoitantly, staff uiu not qualify the suivey iesults by noting that people
suffeiing fiom chionic health pioblems often become uepiesseu uue to theii illness
aftei 2S yeais, but it is not the cause of theii illness.

Finally, staff uiu not say that vA's own uata, iepoiteu to Congiess this Spiing, show
that 8u% of uulf Wai-ielateu claims aie uenieu, anu only 11,216 have been gianteu.
See attacheu vA iepoit to Congiessman Bentivolio. Staff pioviueu a veibal upuate to
this uata, saying that 22,uuu weie appioveu, but the 8u% uenial iate iemains. The
8uu,uuu "uulf Wai eia" gianteu claims iepoiteu in the piess ielease incluues all
veteians who have seiveu fiom 1991 to the piesent, not just those who seiveu in the
199u-1991 wai.

All the Committee membeis piesent last week sent the Secietaiy a lettei pointing out
these misleauing statements anu uiging him to appoint inuepenuent membeis who
will continue to pioviue him with the full stoiy. A copy of this lettei is attacheu. But
even sinceie new membeis will not have the institutional memoiy to be awaie of such
half-tiuths in the futuie. Anu, in any case, vA has alieauy eliminateu the Committee's
oveisight authoiity.

Fiom heie on, neithei the Secietaiy, noi Congiess, veteians seivice oiganizations,
veteians themselves, oi the public will know the whole tiuth behinu vA uulf Wai
ieseaich. In the absence of an inuepenuent, knowleugeable oveisight bouy, staff will
opeiate uncheckeu, anu its campaign to ievive 199u's fictions that uulf Wai veteians
have no special health pioblem will likely pievail. Nost tiagically, meuical science will
again be uiveiteu uown blinu alleys, just as ieseaich to finu tieatments foi the effects
of toxic exposuies is finally tuining the coinei.

The funuamental pioblem, of couise, is not the Reseaich Auvisoiy Committee, but the
piactice of vA staff manipulating ieseaich in the fiist place. This piactice ieaches back
to vietnam veteians anu eailiei. When Secietaiy Shinseki couiageously extenueu
Agent 0iange benefits anu caie in 2u1u to vietnam veteians suffeiing fiom
Paikinson's uisease anu two othei conuitions, he wiote that this action was "long
oveiuue," anu "ueliveieu justice to those who have suffeieu fiom Agent 0iange foi 4u
yeais." http:www.whitehouse.govblog2u1uu8Suagent-oiange-anu-veteians-a-
4u-yeai-wait

This piactice also ieaches foiwaiu to ueny justice anu caie to veteians of the iecent
wais in Iiaq anu Afghanistan. A 2u11 Institute of Neuicine stuuy oiueieu by vA faileu
to finu that tioops' exposuie to buin pits wheie waste was incineiateu was associateu
with illness. This conclusion is the iesult of a slight of hanu in the fiist I0N uulf Wai
iepoit in 2uuu, when the stanuaiu useu in the eailiei I0N Agent 0iange iepoits was
quietly alteieu to excluue the consiueiation of animal ieseaich.

By not consiueiing stuuies in animals, when the vast majoiity of stuuies of haimful
substances aie uone in animals, anu uespite the fact that the law iequiiing the uulf Wai
iepoits states iepeateuly that animal stuuies must be consiueieu, the I0N uulf Wai
committees anu the IiaqAfghanistan buin pits committee have not founu enough
eviuence to concluue theie is haim. Thus, this tampeieu stanuaiu has been caiiieu
uown, continuing to ueny caie anu benefits to iecent veteians, as the uoctois anu
scientists who seive on I0N committees accept I0N staff's assuiance that this stanuaiu
goes back to Agent 0iange anu is what they must apply.
https:veteians.house.govwitness-testimonyjames-h-binns-u

It is time, long past time, foi this all to stop. The Piesiuent, the Secietaiy, anu the
Congiess have committeu to iefoiming vA's cultuie anu iestoiing the integiity of the
uepaitment. That neeus to mean moie than coiiecting false waitlists with tiagic
consequences. A quaitei million ill uulf Wai veteians shoulu not be uenieu caie anu
benefits to which they aie entitleu by law. vA staff shoulu not have to lie in the couise
of uoing theii jobs. Neuical science shoulu be uiiecteu towaiu finuing tieatments anu
pieventions foi an illness that also thieatens futuie 0.S. seivicemen anu women at iisk
of similai exposuies, not towaiu uenying that the illness exists.

The case has nevei been moie cleai. The science is cleai. The eviuence of staff
manipulation is cleai. Theii motivations - to keep benefits costs anu claims piocessing
times uown - aie cleai. Anu the fact that benefits anu caie aie uenieu to the vast
majoiity of the quaitei million ill uulf Wai veteians is cleai.
http:www.sciibu.comuoc228227277Binns-Lettei-to-vA-Congiess-on-uulf-Wai-
Illness-Scanual-u6}un2u14

It is also cleai that if these pioblems aie not fixeu now, they piobably nevei will be,
with the Reseaich Auvisoiy Committee's authoiity anu institutional memoiy iemoveu.

As the Committee iepoiteu to Secietaiy Shinseki in }une 2u12: "These actions iepeat
the pattein of the last twenty-one yeais. "
"The Reseaich Auvisoiy Committee has no confiuence in the ability oi
uemonstiateu intention of vA staff to foimulate anu execute an effective vA uulf Wai
illness ieseaich piogiam. Staff incluues the 0ffice of Reseaich anu Bevelopment, the
0ffice of Public Bealth, anu peisonnel fiom the BoB 0ffice of Foice Bealth Piotection
anu Reauiness who inteiface with them on this subject. The Committee iecognizes the
cieuible woik conuucteu by many inuiviuual vA ieseaicheis, anu the positive
intentions of some staff membeis, but they aie not the ones calling the shots."
"The committee iecommenus that the failuies anu obstiuctive actions outlineu
above be thoioughly investigateu to iuentify the inuiviuuals iesponsible anu that
appiopiiate actions be taken to iemove them fiom positions of authoiity anu influence
ovei uulf Wai illness ieseaich. 0ntil this occuis, we see no piospects foi meaningful
piogiess in vA uulf Wai illness ieseaich."
Insteau, vA has iemoveu most of the Committee anu eliminateu its oveisight authoiity.
The uistinguisheu scientists anu ueuicateu veteians with whom I have hau the
piivilege to seive on the Committee have shown exceptional couiage in speaking tiuth
to powei, fiom oui fiist meeting in 2uu2, to last week. I have been honoieu to
iepiesent theii conceins to five vA Secietaiies anu to Congiess. These pioblems aie
not new.
In testimony to a Bouse 0veisight anu uoveinment Refoim subcommittee in 2uuS, I
askeu, "What kinu of a countiy aie we living in, when we senu men anu women to wai,
anu goveinment officials tieat them like this when they ietuin." In 2uu7, my
testimony to the Senate veteians Affaiis Committee stateu: "This goveinment
manipulation of science anu violation of law to uevalue the health pioblems of ill
veteians is something I woulu not have believeu possible in this countiy until I took
this job."
Peihaps it is just as well that we have come to a cleai foik in the ioau. It is time foi
those in powei to act with the same couiage anu ueuication that the Committee has
shown, anu to enu this shameful histoiy once anu foi all.







Septembei 2S, 2u14

The Bonoiable Robeit A. NcBonalu
Secietaiy of veteians Affaiis
0niteu States Bepaitment of veteians Affaiis
Washington, BC

Beai Ni. Secietaiy,

We gieatly appieciate youi meeting with us yesteiuay anu asking oui views. We look
foiwaiu to woiking with you to auvance ieseaich to impiove the health of uulf Wai
veteians.

Yesteiuay's meeting showeu the neeu foi this auvisoiy committee to pioviue you the
full stoiy on uulf Wai veteians' health. Bespite twelve yeais of woik, the committee
just yesteiuay, thiough its inuepenuent ieview piocess, noteu:

1. vBA staff saiu that vA iecognizes that chionic multisymptom illness anu unuiagnoseu
illnesses aie piesumeu to be seivice-connecteu foi uulf Wai veteians. But theii uata
show that eighty peicent of these claims aie uenieu.

2. 0PB staff iepoiteu on a new ieview of uiagnoses ieceiveu by uulf Wai veteians who
use vA facilities, which appeais to show theii health pioblems aie no uiffeient fiom
veteians of the same peiiou who uiu not ueploy, but the ieview uoes not incluue
7S,uuu uulf Wai veteians who seiveu aftei Naich 1, 1991, the most toxic peiiou, when
oil well fiies buineu anu the uemolition of the Khamisiyah neive agent uepot occuiieu,
anu uoes not state that vA uoctois weie not tiaineu to consiuei the illness a seiious
physical illness. The non-ueployeu also incluue veteians who weie ueployeu latei in
othei opeiations in the same theatei anu have ieceiveu many of the same exposuies.

S. 0PB staff iepoiteu on a new suivey of uulf Wai veteians that shows highei iates of
stiess anu uepiession than pievious suiveys, without mentioning that the suivey was
oveiweighteu with questions on mental health anu that people suffeiing fiom chionic
health pioblems often become uepiesseu uue to theii illness aftei 2S yeais, but it is not
the cause of theii illness.

4. The vA piess ielease issueu aftei the meeting stateu that "neaily 8uu,uuu uulf Wai eia
veteians aie cuiiently ieceiving compensation benefits foi seivice-connecteu issues",
without claiifying that foi benefits puiposes, the "uulf Wai eia" extenus fiom 199u to
the piesent, taking in all iecent Iiaq anu Afghanistan veteians.

Research Advisory Committee on Gulf War Veterans Illnesses


This unueiscoies the neeu foi a continueu inuepenuent ongoing ieview piocess. We
iecommenu that, foi the new membeis you plan to appoint to the committee, you
choose scientists anu veteians who aie inuepenuent of vA staff anu who unueistanu
that uulf Wai illness is not a mental illness, that you continue to pioviue foi the
committee to have its own inuepenuent staff, anu that you continue to welcome the
committee's comments on all aspects of vA's uulf Wai ieseaich piogiam.


Respectfully,


}ames Binns, chaiiman
}ames A. Bunkei
Fiona Ciawfoiu, PhB
Beatiice uolomb, NB, PhB
Nancy Klimas, NB
}ames 0'Callaghan, PhB
Lea Steele, PhB
Robeita White, PhB



























Congressional Inquiry Rep. Bentivolio Gulf War Illness
Responses provided by VBA and VHA

Question # 1: How many GWI (Gulf War-related illness) claims have been
submitted to date? Either solely or in conjunction/connection with other diseases or
disorders?
Response: To date, 54,193 claims have been filed for a Gulf War-related
Illness. This figure represents original claims for service-connection; it does not
include reopened claims or claims for an increased disability rating.

Question # 2: How many claims related to GWI have been granted to date?
Response: To date, 11,216 Veterans have been granted service connection for a
Gulf War-related illness. Please note that due to data limitations, this figure does
not include some Veterans who have been granted service connection on a direct
basis (meaning that the disability became manifest during active service) rather
than under the provisions of 38 C.F.R. 3.317. Of the 42,977 Veterans denied
service connection for GWI, 22,470 (52%) are receiving compensation for other
service-connected conditions.

Question # 3: What is the average disability rating of the granted claims
Response: The average disability rating is 67%.

Question # 4: How much VA funding, either Congressionally mandated and
not, is being spent on GWI research?

Response: VAs Office of Research and Development (ORD) provided $7.94
million in funding for Gulf War research in FY2013. This included 20 projects
suggested by individual researchers at VA medical centers, portions of 4 multi-site
projects, and a contract with the Institute of Medicine. The 20 individual projects are
either two-, three-, or four-year projects, and the total expenditure for these will be
over $19 million. The multi-site projects, which include long-term biorepositories for
storing research specimens, accounted for $2.98 million in 2013. The specimens in
these repositories will be available to researchers for future projects.

For the multi-site studies that include Veterans from other conflicts, only portions of
the costs are listed as supporting Gulf War research.

The research projects funded by VA are selected from those submitted to ORD.
The projects are evaluated by a panel of highly-qualified scientists and physicians
on the basis of their scientific merit. VA uses those evaluations in making funding
decisions, and only the best projects are selected for funding.

The list of projects funded in FY2013 (below) show that the emphasis in the Gulf
War research program is on treatments, the development of diagnostic tests
(biomarkers), and possible mechanisms for the health problems of Gulf War
Veterans.

Question #5: How much non-VA funded research related to GWI is being
conducted in the VA?

Response: VA researchers are also funded by the Department of Defenses (DoD)
Congressionally Directed Medical Research Programs (CDMRP). Six Gulf War
research projects which were selected for funding in 2011 and 2012 are currently
underway and represent total funding of $4.66 million. (See below.) In 2011 and
2012, 7 of the 21 proposals approved for funding were submitted by VA researchers.
Data for 2013 is being compiled.

Question #6: What are the statuses of the studies?

Response: All the research projects are progressing. VA monitors the status of
each project through regular updates required of researchers, and there is
committee oversight for all of the clinical trials. Any projects which are not
progressing as planned by the researcher can be modified or discontinued.


Question #7: For studies involving people, what percentage of the
participants involved suffer from GWI?

Response: Studies involving Gulf War Veterans are focused on specific symptoms.
As examples, some studies deal with pain, others with digestive problems, and
others with neurological problems. One of the difficulties with treating ill Gulf War
Veterans is that they have a wide range of symptoms.

A properly designed research project has a group of ill Gulf War Veterans who are
being studied, but it would also include a control group (of healthy or unexposed
Veterans) and/or a comparison group (such as OIF Veterans) who might have
other deployment-related health problems. Therefore, the percentage of Gulf War
Veterans varies from one study to another, but each study is aimed at trying to
understand the health problems of Gulf War Veterans.


Question #8: For non-participant research, how many studies are focused
solely on GWI?

Response: Gulf War Veterans research studies tend to focus on the symptoms
observed in this group of Veterans. The same is true for animal studies. Some
animal models are used to evaluate the effects of exposures similar to those
experienced in the Kuwait theater of operations. Other animal models are used to
study pain, fatigue, irritable bowel syndrome, neurological problems, combustion
products, sleep disorders, and other problems. All of these studies are related to
Gulf War Veterans health issues and should lead to better treatments.


Question #9: For any studies not focused solely on GWI, what other diseases
are being researched in concert with GWI?

Response: As indicated above, exposures experienced by Gulf War Veterans
during deployment and the health problems observed at the present time are
studied in VA research projects. Some of the symptoms are similar to those
observed in other diseases/conditions, so Gulf War research uses the existing
knowledge about related conditions to characterize and treat Gulf War Veterans
symptoms. Among these diseases/conditions are fibromyalgia (FM), chronic fatigue
syndrome (CFS), irritable bowel syndrome (IBS), sleep apnea, multiple sclerosis
(MS), and amyotrophic lateral sclerosis (ALS). Studies involving these
diseases/conditions are funded at VA as Gulf War projects only if they are likely to
help Gulf War Veterans.


Question #10: How many studies emphasize physiological causes? How
many emphasize psychological causes?

Response: All the studies listed below address physiological problems related to
Gulf War Veterans health as indicated by their titles. There are currently no
research studies focused on psychological problems specifically in Gulf War
Veterans.



VA-Funded Research Projects (FY2013)
Bacterial Overgrowth Associated with Chronic Multi-Symptom Illness Complex
(Albuquerque VAMC)

Impact of Exercise Training on Pain and Brain Function in Gulf War Veterans
(Madison, WI, VAMC)

rTMS for the Treatment of Chronic Pain in GW1 Veterans (Palo Alto, CA, VAMC)

Transcranial, Light-Emitting Diode (LED) Therapy to Improve Cognition in GWVI
(Boston VAMC)

VA Gulf War Biorepository (Boston VAMC)

Gulf War Era Cohort and Biorepository (CSP 585) (Durham, NC, VAMC)

VA Gulf War Veterans' Illnesses Biorepository (Boston VAMC)

MEG Synchronous Neural Interactions (SNI) in Gulf War Veterans (Minneapolis
VAMC)

Diagnostic Utility of mtDNA Content and Exercise Challenge in Veterans with GWI
(East Orange, NJ, VAMC)

Somatic Hypersensitivity in Veterans with IBS (Cincinnati VAMC)

Consensus Case Definition for Chronic Multisymptom Illness in 1990-1991 Gulf War
Veterans (Institute of Medicine)

Central Mechanisms Modulating Visceral Sensitivity (Oklahoma City VAMC)

A Clinical Demonstration of an EEG Brain-Computer Interface for ALS Patients
(CSP 567) (Durham, NC, VAMC)

Immunoregulation of Myelin Specific T Lymphocytes (Portland, OR, VAMC)

Lipoic Acid Therapy for Experimental Autoimmune Encephalomyelitis (Portland,
OR, VAMC)

Multiple Antigenic Peptides to Alter the Course of Autoimmune Disease (Portland,
OR, VAMC)

Host Defense Mechanisms in Polyaromatic Hydrocarbon Compounds
(Birmingham, AL, VAMC)

Neuroprotection and Myelin Repair Mechanisms in Multiple Sclerosis (Charleston,
SC, VAMC)

Sleep Neurobiology and Circuitry (Charleston, SC, VAMC)

Prevention of Hippocampal Neurodegeneration due to Age and Apnea (West Los
Angeles VAMC)

Epigenetic Mechanisms Relevant to the Pathogenesis of ALS (Boston VAMC)

Nanoparticle Coupled Antioxidants for Respiratory Illness in Veterans (Charleston,
SC, VAMC)

Understanding Pain of Gastrointestinal Origin in Women that Serve in OEF/OIF
(Oklahoma City VAMC)

Memory and Mood Enhancing Therapies for Gulf War Illness (Central Texas
VAMC)

Vascular and Skeletal Muscle Function in Gulf War Veterans Illness (Boston
VAMC))



CDMRP-Funded Active Projects conducted by VA Researchers

XMRV and GWI: Is There an Association? (West Haven VAMC)

Redefining Gulf War Illness Using Longitudinal Health Data: The Fort Devens
Cohort (Boston VAMC)

Nasal Irrigation for Chronic Rhinosinusitis and Fatigue in Patients with Gulf War
Syndrome (Madison, WI, VAMC)

The HPA Axis and Metabolic Outcomes in Gulf War Veterans (Bronx VAMC)

Intranasal Insulin: A Novel Treatment for Gulf War Multisymptom Illness (Bronx
VAMC)

Efficacy of Treatments Tried: A Survey of Gulf War Veterans (San Diego VAMC)