Letter to COSVA John Gingrich

VA Appointees, Gulf War Veterans Deserve to be Better Served by VA Career Staff

July 22, 2010

Dear Mr. Gingrich,

First, I want to thank you for your courageous, principled stance on championing issues related to Gulf War veterans.  As one of us, we look to you with hopeful anticipation and continue to wish for your encouragement in achieving so many long-overdue and deeply needed goals on our behalf.  From my own experience helping to lead one of the largest state veterans agencies in the country, I know that this leadership can sometimes mean battling those within your own organization, who can range from well-intentioned to apathetic to resistant to change to even those who think they know better than leadership and believe they and their ideas and ways of doing thing will be there long after the latest batch of appointees are gone.

But I also believe from my personal experiences and from meeting with you that your vision of culture change at VA can indeed be achieved – even if it might mean some rocky times like those in which we now find ourselves with the issuance of VA’s  new press release on Gulf War health research.

As a member of VA's new Gulf War Steering Committee (GWSC) and the Congressionally-chartered VA Research Advisory Committee on Gulf War Veterans' Illnesses, I was surprised to learn this week of VA's newly funded research related to the health of Gulf War veterans.

I was also deeply disappointed at how I learned this news, not from VA staff as a member of these committees, but from a writer from Veterans Today who emailed me the news, which was most surprisingly issued in the form of a press release. 

As a member of these committees and a typical ill Gulf War veteran, I also find the nature of the studies funded to be of concern.  None appear to be related to treatments for exposures from among the nearly comprehensive list of potentially hazardous exposures detailed in the Persian Gulf War Veterans Act of 1998.

I find it extremely disappointing that not only were the two committees with oversight and advisory roles yet again not provided input or even advance notice of these decisions (yet again, same as always in the past), but even the news of these funding decisions was not provided by anyone at VA (and still has not been provided) to our members on the VA's GWSC and the VA's RACGWVI.       

As you know, these committees have substantial, Congressionally- and VA-chartered responsibilities related to overseeing VA’s performance of research related to ill Gulf War veterans.  These “oversights”, if we generously call these serious issues by that name – imply  that VA officials at several levels and in several capacities within VA do not take seriously the oversight and advisory roles of these committees. 

Indeed, the message from these actions is that VA staff can and will simply disregard the oversight and advisory committees created specifically, in part, to help prevent the range of problematic issues described in this letter.   This appears to be in direct contravention to the culture change and policy changes advocated by Sec. Shinseki and yourself.

Additionally, was at least one statement of fact in the VA's press release that is cause for substantial concern.

• Number of Gulf War veterans with Gulf War Illnesses Downplayed.  The VA press release says, "In the years since they returned, nearly a quarter of these Veterans have experienced chronic symptoms....known collectively as “Gulf War Veterans’ illnesses."  This statement contradicts the VA-contracted Institute of Medicine Volume 8 study on Gulf War Veterans' health, released in April 2010, and cited later in the press release, which states the number of veterans at 250,000 -- at 35.9 percent, this number is substantially higher than VA's claim in the release of, "nearly a quarter".  For many years, VA has downplayed the severity of Gulf War veterans' serious and disabling illnesses, and this latest instance is unacceptable and should be corrected immediately in the online version of this press release.

But most importantly of all, the substance of the three studies is deeply concerning.  Instead of focusing on known Gulf War toxic exposures (there’s a nice list in the Persian Gulf War Veterans Act of 1998) and ameliorating the range of health effects known to be associated with those exposures, instead, one of the three VA studies is still, after 20 years of criticism for this kind of focus, focused on stress and psycho-social adaptation to disability without treating the underlying physical health conditions (“mindfulness-based stress reduction”).  To put it simply, of course mindfulness training provides some small bit of health to people in their personal adaptation to conditions of pain and disability and no new, expensive study is needed to show that – but   most importantly this adaptation has absolutely no bearing on the underlying and all too real physical health of the 35.9 percent of Gulf War veterans still suffering from Gulf War illnesses.    To portray this stress management study as somehow providing meaningful treatment to veterans is deeply disappointing, disingenuous, and a disgrace to all 250,000 Gulf War veterans still suffering from very real physical illness related to their toxic exposures.
Similarly, a second of the three announced studies is about exercise to alleviate pain in Gulf War veterans.  Again, this area has been excessively studied by VA, DoD, and the scientific community, and even non-scientist health writers regularly note that exercise helps people with fibromyalgia and chronic pain, but worsen the fatigue and others symptoms in people suffering from chronic fatigue.   Gulf War veterans hardly need a new, expensive study to tell them more about what is already known.

The third of the three VA announced studies is an animal study conducted over four years to assess the efficacy of drugs with anti-depressant, anti-oxidant, and anti-inflammatory properties.   At the end of those four years, presumably it will take some time to publish the results, after which, if success is found, new multi-year studies to study the efficacy of the treatments in humans will be required.  It is incomprehensible why, after 20 years of waiting, these treatments are not being tried in ill Gulf War veterans directly rather than in study design that will require more studies thereafter before treatments ever reach the Gulf War veterans who need them.  Even if  this study of anti-depressants turns out to be effective, instead, this study will take years before any potential benefit can pave the way for yet another study, meaning many more years of waiting by the 35.9 percent of Gulf War veterans still suffering from Gulf War illnesses. 
In addition to the fact that adaptations to disability purporting to be “treatment” have already been excessively studied by VA and DoD over the last 20 years at costs ranging into the millions of dollars, to put it simply, after so many years of VA missteps, these latest missteps by VA are simply unacceptable, as I am sure Sec. Shinseki and you would agree.    Most importantly, these kinds of missteps are fully preventable if the oversight and advisory bodies cited above are actively engaged by VA staff and their recommendations heeded.  But again, these committees were not only not consulted, they still haven’t even been informed of these decisions made without their input on issues directly within their purview.

All these issues suggest that despite all the expressed good intentions, staff inside VA continue through their actions – whether intentional or not – to undermine these efforts.  Perhaps they want this Administration to fail, perhaps they have their own agendas, or perhaps they just don’t get it. 
In any case, given all of these facts and circumstances, on behalf of my fellow Gulf War veterans, here are my specific questions for VA leadership – questions I believe any reasonable person would have given the circumstances:

1.  What specific corrective steps are being taken immediately by VA leadership to ensure that the stated oversight and advisory roles of the GWSC and RACGWVI are respected and followed by VA staff at all levels?  These bodies cannot perform their intended functions when they are completely bypassed by VA staff.

2.  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.

3.  When will VA correct the factual error in the press release?  Again, in one place in VA’s press release VA cites the number of the 696,842 Gulf War veterans still suffering from Gulf War illnesses as “nearly a quarter,” when the Institute of Medicine, contracted by VA, shows this number to be  far, far higher -- at least 250,000, or 35.9 percent.   That’s one-third again higher than “nearly a quarter”.

4.  When will VA provide the rewritten press release to every member of the two VA committees that have oversight over Gulf War veterans’ health issues?  (GWSC and RACGWVI)

For the last year, I have been using my leadership role to reassure my fellow ill Gulf War veterans – including through the Gulf War health news website I publish, 91outcomes.com, which has had more than 25,000 readers in the mere 16 months since it was created -- that change is coming, and that VA has a new focus and a dramatic culture shift that will almost certainly lead to effective treatments for Gulf War veterans’ toxin-induced disabilities.  For most of us, like any other disabled veteran, all most of us has ever wanted is our health restored to a state as close as possible to its pre-war state.  Science tells us that may very well be possible, that effective remedies are within our reach – but the choices made in selecting these three studies do not reflect the direction that the scientists tell us should be the way forward.

VA’s serious factual, procedural, and research-focus errors have rocked my growing trust in the new VA, trust that can only be regained by VA leadership taking immediate, good-faith steps to remedy these serious issues. 

Should that not take place, as might be expected of any reasonable person, then I will be left only to fervently hope that those participating in next week's Congressional oversight hearing on Gulf War veterans' illnesses will make known as widely as possible all of these serious issues – and in a public oversight forum attended by Congressional leaders, national media, and powerful representatives of the Gulf War veterans’ community. 

But, I assume that both of us hope that won’t be necessary.  I remain optimistic that Secretary Shinseki and you can find ways to effectively cause VA staff to conform to your vision of the “culture change” desperately needed by the at least 35.9 percent of Gulf War veterans still suffering from the life-long effects of their Gulf War toxic exposures – a vision that so many of us out here share with great hope and expectation. 

If ever there was leadership that can indeed get this right, I believe it is both of you.  Please, don’t let us down now.

Again, thank you for all that you have done for all of us

With utmost sincerity,

Anthony Hardie
Madison, Wis.