Blogging About Gulf War Illness: An Unexpected Public Response to Proposed VA Rule Change

(91outcomes.com) - This week, our friends at the U.S. Department of Veterans Affairs (VA) are in for a special surprise -- 169  public comments posted in response to VA's regulation change extending the sunset (expiration) related to applying for service-connection benefits for ill Gulf War veterans.

Typically, these sorts of open public comment period on VA's rule making only garner a handful of public comments, perhaps a couple dozen at most.  This time, more than a dozen dozen weighed in.   

Not surprising were the many comments expressing firsthand the ongoing pain and suffering of a Gulf War veteran.  

Benevolent VA officials were almost certainly simply trying to quickly and efficiently do the right thing by extending a benefits application deadline by another five years, which is certainly better than letting the deadline simply expire and easily appreciated.

But perhaps very surprising to these officials, most of the public comments expressed frustration that this kind of a kick-the-can-down-the-road approach is simply not the right way to approach this issue.  

Instead, and not at all surprising from the perspective of ill and worn out Gulf War veterans, commenter after commenter called for this extension to be made permanent.  

Almost every day, I read the words of dozens of ill Gulf War veterans and their loved ones, in personal messages, comments left on this and other websites, posted online in forums and Facebook groups.  Their pain and sense of feeling alone and forgotten is at times overwhelming.  The frustration sometimes turns on each other, but equilibrium is soon restored as cooler heads, a sense of community, and shared pain prevail.  And this time, the frustration seemed to bubble over and turn into energy and then action.   

Without public participation, democracy quickly becomes undemocratic.  And so, to the many Gulf War veterans and their loved ones who took the time and effort to weigh in with those making decisions for you, whatever your views or comments, however long or short, however detailed or to the point:  well done.   

To the much, much larger body of Gulf War veterans and their loved ones out there who are equally suffering, know that 169 of your fellow Gulf War veterans, their loved ones, and others who support you spoke up and made their voices heard on your behalf, saying what needed to be said.   

Today, I am in pain.  Today, I am worn out.  But today, I have new hope that once again the Gulf War veteran community may be truly reawakening.  

**UPDATE Sunday, Mar. 4., 2012 -- I have been told that VA officials are taking this outpouring seriously.  This will indeed be encouraging if this support is backed up by action.

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One ill Gulf War veteran commented that this rule extension is only one of many issues for our community.  I could not agree more. 

So, stay tuned for: 

• Ensuring the GWI CDMRP is fully funded in the FY13 Defense Appropiations Acts in both House and Senate bills in this year's round of mandated, massive Congressional budget slashing -- it won't be an easy battle and will likely require a whole lot of collective letter writing, emailing, and phone calling.
• Seeking a large increase in GWI CDMRP funding to $25-40 million, a difficult but not impossible reach.
• Seeking inclusion in relevant Gulf War benefits laws for the "lost" Gulf War veterans -- those who served in Israel, Turkey, the Red Sea, and other areas awarded the Southwest Asia Service Medal (SWASM) but inexplicably not authorized the same benefits as other Gulf War veterans.
• Seeking House authorization of the GWI CDMRP in the FY13 National Defense Authorization Act (NDAA) to help ensure the program's continued existence.
• And then.... 

Meanwhile, it's important for as many as possible from the increasingly reactivated Gulf War veteran community to continue to stay on top of the reports and progress of things that directly affect us, such as:

• VA Gulf War Task Force. Its last annual report contained a whole lot of plans, some good, some that needs adjustment.  This will take a lot of work inside and outside VA, and continued monitoring and involvement by the Gulf War veteran community.
• VA Research Advisory Committee on Gulf War Veterans' Illnesses (RAC-GWVI). This permanent, statutorily-mandated oversight and advisory body created by us and for us through legislative action Gulf War veterans sought and fought hard to win way back in 1998.  The RAC is composed of roughly two-thirds brilliant medical researchers and roughly one-third ill GW veterans (including me).  It meets two to three times per year and functions in many ways, including holding VA's feet to the fire, hosting important medical research updates, and crafting national public reports that have impact across government and society (recall the Nov. 2008 global headline, "Gulf War Illness is Real" and the seismic shift that influenced -- including IOM's agreement with that finding, then additional rounds of Congressional hearings, then renewed openness in Congress to fund *TREATMENT*-related medical research instead of the other things funded over other previous 15 years).   
• Restoring VA funding for GWI research to at least $15 million per year.  The latest budget shows it has been funded at just $5 million per year in recent years, and is proposed to be held steady at that unacceptably low level.  
• VA Gulf War Illness Research Strategic Plan. It's not done yet, and has not yet been approved as it makes its way through the complexities towards ultimate approval. Implementation will be key as well. 
• As called for in the new, draft Gulf War Illness Research Strategic Plan, expanding VA Gulf War research to focus (finally) on improving the health and lives of ill Gulf War veterans.  What was it focused on before?  Let's not go there.  
• The new Gulf War data report (formerly GWVIS). This is the bean-counting report on VA usage, and believe me, Gulf War veterans need to be counted. The more Gulf War veterans cost the federal government in long-term disability benefits, the more cost-effective to national leadership it becomes to try to help Gulf War veterans get better and get back to living their lives to the fullest, including working if once again able to do so after effective treatment. 
• The new VA Office of Public Health Survey. It will go out to 30,000 Gulf War veterans. Several Gulf War veterans expressed outrage during the most recent RAC meeting in Washington, DC earlier this month that it still primarily on stress and not on GWI and our physiological health.  Other members of the RAC agreed. This must be fixed, or all the good will VA has been working to rebuild with Gulf War veterans stands to be lost.  

--Anthony Hardie, Gulf War veteran, Madison, Wis.