Written by Anthony Hardie, Gulf War veteran.
For nearly seven years until last Summer, I served on the Research Advisory Committee on Gulf War Veterans' Illnesses (RAC) as a representative Gulf War veteran suffering from Gulf War Illness, a complex disorder with neurological and immunological components brought about by toxic exposures during the 1991 Gulf War and which now affects roughly one-third of the 697,000 veterans of that war.
I also continue to serve with the treatment-focused Gulf War Illness Congressionally Directed Medical Research Program (CDMRP), helping to steer its course through my role on the program's Integration Panel. In that role, I've reviewed virtually every one of many hundreds of research proposals that have been submitted for funding since the program begin in Fiscal Year 2006, and have fought hard every year since with fellow Gulf War veterans, allies, and our friends in Congress to fund the program each year. Through that role, I've been able to see what real treatment-oriented research and a genuine treatment-focused treatment program looks like, which has helped to make increasingly clear how broken VA's Gulf War Illness research effort really is.
During my tenure on the RAC, I did my best to represent my fellow ill Gulf War veterans, respectfully providing the wisest and most representative comments I could to VA during our discussion and in our reports, spending many hundreds of hours reading research publications and relevant medical textbooks, and spending countless time talking with researchers and ill Gulf War veterans to provide the best possible insight to VA and the other members of the panel.
As part of that effort, I also served as the sole Gulf War veteran on a VA's Gulf War Steering Committee, a committee created by VA staff composed of five members of VA's National Research Advisory Council and four members of the RAC. None of its meetings were public and it was never clear to me how that this advisory body didn't fall under the Federal Advisory Committee Act (FACA). However, I trusted VA staff to be doing the right thing as we worked diligently in Washington and via teleconference in a myriad of meetings of the full committee and many drafting subcommittees to create a first-ever Gulf War Illness Research Strategic Plan.
When the plan was complete in early 2012, after around 18 months of work, we didn't hear anything back for quite some time. Then suddenly, in May 2012, we heard back from VA that it had unilaterally and substantively edited the consensus-based plan. This was just shortly before the next schedule RAC meeting in June 2012, to be held in Boston.
In reviewing the VA staff edits to the plan, made without consultation of any of the many advisors who had worked so hard to create it via consensus -- no small achievement for any working group on any topic and even more so on a topic as difficult as Gulf War Illness -- it became apparent that the edits were essentially a terrible whitewash of the document.
The RAC responded strongly at its June meeting, most of us still in shock at the turn of events and a return to a much darker time in dealing with VA. Some might even characterize that response explosive, given the anger at having been convinced ever so slyly by VA staff to work so hard to create that consensus plan, only to see it whitewashed and many of its most important recommendations changed beyond recognition. The RAC issued a series of recommendations reading the report, called for VA to return to the January 2012 version of the plan, and unanimously issued a "no confidence" finding in, "the ability or demonstrated intention VA staff to formulate and execute an effective VA Gulf War illness research program."
The RAC then saw meeting after meeting cancelled. Despite a regular schedule of three meetings per year, the RAC was not allowed to meet again until a full year later, in June 2013.
As will be discussed in a little more detail shortly, two of the three of us Gulf War veterans resigned from the RAC last June in protest of VA not listening, in the hopes of raising awareness of the many serious issues that VA continue to fail to address.
Now, following this week's meeting of the RAC, I have been made privy to some discussion about VA's Dr. Robert Jesse suggesting new moves related to restarting the VA's Gulf War newsletter.
The last time VA restarted the newsletter was after I made it a key point in my July 2007 Congressional testimony. Here's what I said about the newsletter then:
"It is stunning that after nearly two decades, we still have little information to provide to Gulf War veterans who remain ill from their service.
It is true that VA does still have an open door for Gulf War veterans to be seen at VA medical facilities.
However, being seen is not the same thing as being treated.
The VA’s Office of Public Health and Environmental Hazards website contains little information that might be of any use to ill Gulf War veterans or their health providers. Much of the information provided is dated between 1996 and 2001, years before the more recent research discoveries related to ill Gulf War veterans that affirm what Gulf War veterans have been saying all along – that their Gulf War exposures are what made them ill.
In July 2006, the VA’s “Gulf War Review” included an article entitled, “Straight from the Source: VA’s Environmental Agents Service is Serious About Communicating With Veterans.” That issue, a year ago, was the last issue published."
[FOR THE FULL TEXT, SEE: http://veterans.house.gov/
VA staff scrambled to respond to the Congressional committee regarding this issue. They lied (again) at that hearing and said the next it would be published shortly after the hearing -- but then didn't publish the next issue for nearly a full year thereafter, not until May 2008.
The present VA leadership inexplicably allowed the newsletter to die yet again after last publishing it in July 2010. Should they restart it? Obviously yes -- but they don't deserve praise for fixing something they themselves allowed to break. Sadly, the staff issues at VA remain a problem, and like the last Administration, the present VA leadership has failed to fix them. Administrations come and go, but the problem career staff at VA headquarters remain entrenched in place, like the problems they create.
But the newsletter is really a side show, and most of the research news on GWI comes from outside the VA's failed research efforts. The real core issue for VA leadership to address with regards to the RAC, from my 2009 Congressional testimony, is this:
"When will VA begin a treatment-focused research program -- as called for in the more than a decade-old Persian Gulf War Veterans Act of 1998 -- that is based on alleviating the known health effects associated with the known toxic exposures of the 1991 Gulf War? VA officials note in this press release, “The IOM report noted that the illnesses seen in Gulf War Veterans cannot be ascribed to any psychiatric disorder and likely result from genetic and environmental factors,” yet not one of these new expensive new studies focuses on environmental or genetic factors that caused 250,000 Gulf War veterans’ illnesses."
[THE FULL TEXT IS HERE: http://
This is a journey on which VA has barely begun to embark, nearly five years after that very public testimony.
It's not that VA leadership hasn't been advised -- repeatedly -- on what needs to be done. That advice has been provided respectfully and repeatedly in closed door meeting after meeting with top VA leadership, in RAC report after report, in Congressional testimony upon Congressional testimony at hearing after hearing at which senior VA staff are present. It's that they have failed and continue to fail to do it.
The Research Advisory Committee is about *Research* -- nothing more, nothing less -- and before the despicable charter changes signed into effect last May, it was aimed at improving the health and lives of ill Gulf War veterans. There are those who would like to direct attention elsewhere and make the VA look better. However, current VA leadership have done nothing to merit reducing Gulf War veterans' critical scrutiny -- and in fact have left things much worse then before this Administration started... and I'm a lifelong Democrat with strong involvement in Obama's campaigns, so my comments are the furthest thing from partisan in nature.
Some are now trying to suggest that confrontation with VA is bad. I wrote above about the roots of what VA staff have done that led to the RAC becoming increasingly confrontational with a very broken VA, and they were provided in more detail in a May 29, 2013 letter from RAC Chair Jim Binns. Confrontation isn't bad when it's constructive, which it always has been. It's simply that VA leadership remains deaf to Gulf War veterans' needs.
Instead of fixing the issues raised in the May 29, 2013 Binns letter, VA staff, backed by the VA Secretary, decided to move forward and gut the RAC's charter. Along with those very serious changes to the RAC charter, they decided to sweep out the old for new people, perhaps in the hopes that some might be more willing to "sing kumbaya" rather than rock the boat and actually raise substantive issues of needed change in VA's research direction.
I was told at the time of the charter changes that I had been deemed, "the indispensable veteran" on the RAC, and would be kept on "for continuity". I reflected on the fact that VA has continued to spin away, whitewash, or simply ignore many of the most important recommendations of the RAC, including nearly all of the January 2012 Gulf War Illness Research Strategic Plan.
I made the very difficult and personal decision that I would not stay in light of VA's gutting of the RAC charter, and that what was truly important was not staying on a neutered RAC "for continuity" as VA wished for me to do, but in continuing to do whatever I could to help work towards ensuring that Gulf War veterans' needs are met -- and to date, VA had ignored (and still does) nearly all of the RAC's recommendations on how to do this. At the June 2013 meeting, I announced that I was resigning in protest, and I tried to make it clear that I didn't want to serve on an advisory committee whose advice was simply being ignored by VA.
Some have tried to belittle the seriousness of the VA's dramatic changes to the RAC's charter, scope, and mission. The beginnings of the truly serious impact of those charter changes became clear to the public at this week's RAC meeting, when the RAC was forced to scrap a major, entire section of its forthcoming report that would have reviewed the effectiveness of federal Gulf War Illness research efforts, measured by the standard of improving ill Gulf War veterans' health and lives.
Some have even gone on to slanderously suggest that some RAC members were merely trying to hold onto their seats for reasons of personal prestige, suggesting, "there have always been term limits". To clarify, there have never been limits to how many successive terms a VA Secretary can appoint someone. Furthermore, all of our terms as RAC members had long expired, but VA staff kept requesting our presence in writing for each successive RAC meeting, while VA leadership continued to not be bothered by anything at all related to the RAC, from recommendations to appointments or reappointments. And to my knowledge, there was not a single RAC member who was doing anything to try to stay on any longer that invited by VA to do so.
When I hear such statements, I am appalled by the apparent lack of awareness of how seriously and selflessly virtually every RAC member in the last few years has taken their roles, and I'm angered at that the apparent aim of such ill-informed statements is directed at discrediting or otherwise hurting the incredibly dedicated people who have devoted so much of their selfless efforts to serving Gulf War veterans -- at the request of the VA -- through the RAC. Perhaps it has not been obvious how much additional time and effort virtually every RAC member, scientist and veteran alike, put into fulfilling the seriousness of their charge to help improve the health and lives of ill Gulf War veterans -- at the VA's request.
In contrast to the high ethical standard set by every one of the RAC members in seeking to push the federal government to develop effectives GWI treatments, what is unconscionable is that VA leaders and staff have failed to come even close to meeting that high standard. VA Secretary Eric Shinseki has failed to appear at even a single RAC meeting in the more than five years he's been in office, and has been entirely unresponsive to the RAC's written recommendations -- a far different VA Secretary on Gulf War health issues from all of his predecessors.
It's time VA leaders like Dr. Robert Jesse get serious about what needs to get done at VA for Gulf War veterans.
Wondering where to start?
1) The January 2012 version of the Gulf War Illness Research Strategic Plan, developed by a consensus of three advisory bodies including the NRAC, RAC, and Gulf War Steering Committee -- and a couple dozen scientists from inside and outside the VA. To date, VA has done little of what's in the plan, and rewrote and distorted the portion on how a new GWI case definition should be developed to meet their own plans to give it to a psych- and stress-focused IOM panel on "Chronic Multisymptom Illness" (CMI) that seeks to lump all multisymtom illness issues from all eras into one big pot. Imagine the potential of success in finding treatments then.... Next to zero. SEE: http://www1.va.gov/RAC-GWVI/
2) Written testimony submitted by 14 Gulf War veteran leaders. To date, there has been no response and no action. SEE: http://www.scribd.com/doc/
3) My most recent Congressional testimony from March 2013, with a long list of recommendations that included and built on the recommendations in #14, none yet heeded by VA. To date, there has been no response and no action. SEE: http://veterans.house.gov/
4) The June 10, 2013 letter from all the Gulf War veterans on the RAC to VA Secretary Shinseki, with a lot of history and recommendations, which built on #2 and #3 above. That letter didn't even merit the courtesy of a VA response, let alone any action on the substantive issues raised in that letter. SEE: http://www.scribd.com/doc/
5) The August 26, 2013 letter from Paul Sullivan and a dozen other Gulf War veteran leaders, many active in this Facebook group, to Dr. Robert Jesse, who was active and vocal in this week's RAC meeting. To date, there has been no response and no action. SEE: http://www.scribd.com/doc/
The RAC isn't about claims. It's not about health care delivery. Without property directed research aimed at genuinely monitoring GWV's health and GWI and other symptoms, and VA research aimed at solving what is going on the in brains, nervous systems, and bodies of GWI patients -- none of which VA is doing -- then all the claims information and changes to how health care is provided won't make much difference to anyone.
The RAC is about developing treatments for GWI and any other GW health condition through appropriate *research*, and providing epidemiological monitoring of health outcomes -- including death -- in Gulf War veterans. The VA continues to fail miserably on both of those tasks. When you hear about advances in research treatment, like from Dr. Nancy Klimas, it's because a handful of RAC members worked with our friends in Congress to create the GWI CDMRP, and work hard with grassroots veterans and other supporters each and every year -- battling VA and its allies in DoD -- to ensure it is funded again each year.
For example, ALS has been shown to have been double the rate in GWV's in the early years after the 1991 Gulf War, and in a much younger population. But to date, "treatments" for ALS only prolong life on average by an additional 4 months in the invariably terminal disease. So, it's all well and good to try to make ALS patients feel "more comfortable" as they're dying a horrible death, but what they really want are *proven effective* treatments that will cure, or at least dramatically slow the course of that disease. To date, that doesn't exist -- only palliative care that tries to make them "more comfortable" as they're dying.
The same goes for GWI. What VA mainly has is palliative care, and band-aids for the symptoms. There are no proven effective treatments yet, though through the GWI CDMRP that work is finally progressing, much of it through animal models which if successful will only generate treatments years from now.
So in other words, I'm pretty firmly of the belief that spending time praising VA for care delivery models or disseminating claims information is pretty far from the former mission of the RAC before it's charter was recently gutted --- to ensure the development of effective treatments for GWI and to measure any VA success by that standard.
In short, if you're looking what needs to be done at VA, there are several items above that may be of use. The newsletter is an obvious and important communications tool to Gulf War veterans, but it's a tiny drop in the bucket of the real meat of what VA needs to fix before there's anything worth VA writing about to even put in that newsletter.
To date, nothing at VA has changed, and it's not because they haven't been given written best practice recommendations on what needs to be done.
There is only one standard by which VA should ever be judged on its research efforts: is VA providing proven effective treatments for Gulf War Illness to veterans who seek care at VA medical facilities?
It's time from Dr. Robert Jesse to respond to Gulf War veteran leaders' letter of August 26, 2013 -- not with words, but with substantive action to fix some of the issues raised in that letter.
Only then does he, or VA, deserve to begin to earn Gulf War veterans' trust.