Analysis and Questions on Testimony on Gulf War Illness Research from May 19th House VA Committee Part 1

House Veterans’ Affairs Subcommittee:  Oversight and Investigation, May 19, Gulf War Illness Research is Enough Being Done?

The first testimony we shall examine is Statement of Lawrence Deyton, MSPH, MDChief Public Health and Environmental Hazards Officer,Veterans Health Administration, U.S. Department of Veterans Affairs

"At the direction of Congress, VA, in 2002 chartered the VA Research Advisory Committee on Gulf War Veterans’ Illnesses (RACGWVI) to advise the Secretary on the overall effectiveness of federally-funded research to answer central questions on the nature, causes, and treatments of Gulf War-associated illnesses.  The RACGWVI’s charter stipulates that they are to provide information to the VA and not to independently release information.  Despite their charter restrictions, the RACGWVI has published and released an independent report, including recommendations, in 2004 and again in 2008. The 2008 RACGWVI Report and recommendations from the RACGWVI were presented to the former Secretary in November 2008."

No where in the law that was passed due in large part to veterans of the gulf war advocating on the hill in DC since 1992 for more transparency does it state a restriction will be put on the committee in the form of reports that are submitted to the Secretary of the VA before they are available to the public.  The veterans also state this was never raised as an issue in 2004 and that the 2004 report was not referred to the NAS/IOM and no where in the law is that requirement stated. 

"These research agendas are supported and complemented by the work of a range of partners, both inside government and out.  For example, the VA/DoD Health Executive Council oversees the Research Subcommittee of the Deployment Health Work Group, and the Department of Health and Human Services participates in both the Deployment Health Work Group and its Research Subcommittee.  This cooperation provides essential data on military and civilian populations and reflects some of the best research from across the country"

Gulf war veteran advocates are not allowed to serve on or even witness these meetings.  These meetings do not even allow a public forum to witness their proceedings and no transcripts are available for public review of their discussion and meeting contents.  This is a total closed door secret forum.

"Formally established by law in 1992, VA’s Gulf War Veterans’ Health Examination Registry is still available to all Gulf War Veterans, including Veterans of the current conflict in Iraq."

Gulf war Veterans and advocates point out that there is no signage or information available about these registries at VA Clinics and VA hospitals.  Veterans of the Gulf War that have tried to avail themselves of these exams/registries have been reporting from across the country that they have tried to do this with no success at their local VA Clinics and Hospitals.  They state no one at the information points within the VA can direct them to the people in charge of the registry/exams and how to find them at the hospitals or simply tell them we are not doing that anymore..

"After 15 years, the principal finding from VA’s systematic clinical registry examination of about 16 percent of 1991 Gulf War Veterans is that they are suffering from a wide variety of common and recognized illnesses.  However, no new or unique syndrome has been identified.   VA recognizes that registry data has significant limitations. Registry participants are self-selected and do not necessarily represent all Veterans.  Additionally, any findings from a Registry are limited to that population and do not demonstrate whether Veterans are receiving any diagnoses at rates different than expected"

The veterans immediately ask why only 16 percent had Clinical Evaluations and that all of these 16 percent did not get Phases 1-3, nor did they receive follow up examinations since they had the initial evaluations.  The veterans of the gulf war are quick to add that these registries don’t even seek to identify specific units they served in or location in theater that would greatly help in relating to different exposures in the gulf at different locations.  They also point out that no effort has been taken to marry up the registry exam and their later findings from lab work, diagnostic tests or diagnosed illnesses they now are exhibiting like MS, Cardiac, GI, Respiratory.  The veterans also have been suggesting that their were to be different phases to the Clinical Evaluation program and many did not get examined in Phase 2 or 3 that would have been more definitive diagnostic testing.  The veterans also point out there has been no uniformed reexamination done from these initial Registry Examinations.  There is also no clear way they can submit outside clinical findings from their civilian doctors or research physicians.  They state that they try to share these data from their own exams outside the VA and the VA doctors simply ignore and downgrade those additional sets of professional medical findings to further evaluate the gulf war veterans that they claim they are giving first rate care.

"VA also works closely with the National Academy of Sciences’ (NAS) Institute of Medicine (IOM) to evaluate potential associations between environmental hazards encountered during military deployment and specific health effects.  Since 1991, IOM has completed nineteen independent reviews of Gulf War Veterans’ health issues.  VA has pursued this relationship with IOM at its own discretion and upon recommendation by Congress for Vietnam and Gulf War Veterans, as well as Veterans of other eras such as today’s conflicts in Iraq and Afghanistan.  IOM’s work has allowed VA to recognize approximately a dozen diseases as presumed to be connected to exposure to Agent Orange and other herbicides used during the Vietnam War, and to the dioxin impurity some contained.  IOM’s opinion is regularly sought to address a range of health care issues.  Their independent stature and collection of internationally recognized scholars and researchers uniquely positions the IOM to provide expert, well-informed findings free of conflicts of interest.  When VA works with IOM, we generally defer to their professional opinions concerning methodology to support this independence.  Their reports consider all available research, including both human and animal studies, to guide their findings about whether there is a connection between exposure to a substance or hazard and the occurrence of an illness and whether there is a plausible biological mechanism or other evidence to support that connection."

The veterans are quick to show research done at University of Georgia and Duke University animal studies that have been given less value than they should have been given by the IOM and they, the veterans wonder if the IOM actually reviewed those studies and invited the researchers into the IOM to review their findings directly with the IOM and to address any questions the IOM might have.  The veterans also state that the majority of the IOM meetings are closed to public scrutiny and very little in form of minutes are produced of these meetings for transparency.  When there is open meetings the veterans reports of what happened in the gulf from direct experience and reporting is ignored.  When asked if these doctors or scientists have ever themselves examined or cared for gulf war veterans, the answer is always NO!  Now we understand they review peer reviewed journal research articles but how about non published DOD reports of research on these exposure agents and how about any direct reports from in theater during the war of what was really occurring.  Has the IOM ever held a meeting and invited the medical DRS that were in command positions in theater to receive input to them from these valuable and honored military and veteran Doctors that may have additional information to share?  THE ANSWER IS NO.

"In summary, these nine independent IOM committee reports have found that Gulf War Veterans experience greater rates of symptom-based illnesses compared to their non-deployed peers, but no unique illness has been identified.  Further, most of the environmental hazards reviewed have not been found to explain illnesses experienced by Gulf War Veterans.  "

The veterans respond that they have asked for public registry for deaths by unit, age, and cause of death and registries for diagnosed illnesses by unit, and age of individual that would help researchers to have a clearer picture of what is occurring post war and addressed the veterans health concerns. They also want outside independent oversight and actuaries and expert civilian medical specialists to review these in relationship to healthy normal population based statistics.  They want these publicly available on the internet and updated monthly to catch any developing trends faster.

The veterans also ask what is the rate for nondeployed and why are some percentage of them reported as ill and if this is above what was reported prewar in terms of illness complaints.  They also ask if the veterans that were nondeployed were adequately screened for exposure to vaccines and returning equipment and supplies that may have been a secondary exposure vector source.  They also ask about civilian contractors that served in theater and those at port of returning equipment after Desert Storm who have also reported illness are considered.

They are concerned about the validity and accuracy of research if all these factors were not evaluated.  They also addressed the lack of correlation of unit specific data collection on gulf war illnesses, diagnosed illnesses, exposures, and deaths post war in research, gulf war registries, and clinical evaluation programs as one huge mess.  Records of vaccine data, unit action reports, and medical records missing are major complaints that affect veterans’ ability to be adequately assessed clinically and for benefit claims administration.  They are asking to prove direct combat ie combat ribbons and other data the veteran patients dont have.  They justifiably state that the level of proof or bar of proof keeps rising making it near impossible for them.  They also wonder where is the accountabilty for records maintenance and records destruction and punishment for those that broke those policies.  They also wonder when more records from Desert Storm that occurred in 1990-91 will be declassified or available through FOIAs.

They also express concern for their nondeployed peers that have reported illness and have no access to the VA or any laws to cover them or registries or exams/testing available to this group.  In summary they have very grave concerns that have been voiced at each opportunity they have had to do so.  Answers to their questions are never given.  Their low and falling confidence in the system is justified. 

The veterans also state that it is near impossible to be seen at the VA War Related Illness Centers due to local VA’s non referral policy and lack of travel funds.  They have asked for the return of referral centers geographically scattered thru out the nation for Gulf War-Desert Storm evaluation and testing or even 6-8 Centers of Excellence specifically for Gulf War Illness and that travel funds be provided, that civilian doctors with expertise be hired part time to train VA physicians(throughout the country) and to help staff these centers.  They have done their research based on what the VA does provide ie COE, civilian medical universities that are well established be more involved, and locations of civilian physicians that are experienced in treating CFIDS and fibromyalgia in making their recommendations for future improvements in location, training , and research that rapidly bridges to clinical practice implementation.

The veterans also state the lack of reports that were to be released quarterly ie GWVIS Data that have missed deadlines and gone thru at least more than a year without reports and then discrepancies appeared in the latest GWVIS that show numbers that are decreased from previous reports with no explanation.  They also state that the Gulf War Review the tool to communicate with Gulf War Veterans has not been published as was established and for years it has been totally missing.  They state that the clinical training programs given to practioners is dated and in need of full redevelopement.  They question if the physicians are actually given the time and monitored to assure that they are reading the manual for training before simply filling in the test at the end to conserve their time when they are understaffed and overworked (a practice known as filling the squares).  The training program for clinicans don’t even include video web cast updates for physicians at the VA to keep them well informed and for them to be able to address questions they have as physicians and to provide them time effective means to access this information.  Their has been a lack of the annual meetings for gulf war illness that the VA was holding annually early on after the Desert Storm Operations. 

The veterans are almost unanimous that they are giving up with the VA that has failed them.  The most recent Gulf War Veterans’ Advisory committee even has cut short their meetings outside of DC, have no recommended plan to include this newest advisory committee in an going fashion after September, that the veterans input to suggestion to include recommendations for that report due in September is not being added by the advisory committee that deals with benefits and care for Desert Storm Veterans, and that Chairman Cragin’s previous work with Dr Bernard Rostkner, DOD, Office of Special Investigation for GUlf War illness should also be scrutinized.  They wonder if they are truly being given a fair and just and impartial process with so many people that were previous  directly involved versus more independent and outside the beltway influence.  The veterans also state they would have preferred the gulf war veterans who have become known as their advocates since 1992 and not the VSOs should have had more seats on that advisory committee.

They are calling for more hearings from both the House and Senate VA Committees and are asking for JOINT Senate and House VA committee meetings where all stake holders can be heard especially since 18 and a half years have passed, that large amounts of funds were misdirected until 2005, and so many of their questions are not being adequately addressed.  They also request that the doctors and medical providers in all levels from command down to units that were in theater be given immunity and protection to come forward without risk of retaliation at that time.  They are asking for legal actions in form of laws be formulated in relation to health care providers and researchers that came forward to help and officers faced financial and career impacts directly due to their standing up for the Veterans affected by the Gulf War.  They also want questions addressed concerning pyridostigmine bromide that some units were order to take as early as August 1990 on deployment from stateside locations, and under non medical guidance handed off to non medical unit commanders practices in Operation Desert Storm must be addressed and the continued use of pyridostigmine bromide or operating procedures still in the military manuals be reviewed and revised for the safety of current and future troops.

The veterans are also asking that President Obama state his policy in regards to Gulf War illness and he also enact his open and transparent government practices in regards to the veterans that have served this country.  The veterans are also asking for full utilization of video live interactive sessions of any and all hearings or advisory committee meetings, or any meetings that concern them and their health to be open at local VA hospital auditoriums or medical universities contracted with by VA so that health providers, veterans, family members and the public can attend and have full transparency and interaction.  The systems are there in the federal and university system paid for by taxpayers and this should facilitate communication and information sharing in a more cost and time effective means for all.

Certainly this analysis and their recommendations should be given serious consideration and implementation if at all possible.