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.
Kirt P. Love
Former member VA ACGWV