Subject: Re: PACT ACT roll out in VISN 17, and the healthcare benefits issues of Gulf war veterans
Date: Fri, 16 Dec 2022 10:45:23 -0700
From: binns.jim@gmail.com
To: Kirt <kirt@gulflink.org>
CC: RAC <VARACGWVI@va.gov>, Denis McDonough <Denis.McDonough@va.gov>


Dear Kirt,
Of all the messages that you’ve sent me over the years, this one stands out as uniquely powerful.  It accurately conveys the pain and isolation of Gulf War veterans, while acknowledging the often sympathetic efforts of VA personnel at the local level to address their needs.

Your description of how your own symptoms progressively worsen despite their efforts also represents a sad analogy to the efforts of VA Washington to include Gulf War veterans in the recognition of toxic wounds represented by the PACT Act, while the Act left unaddressed the main health problem suffered by Gulf War veterans, Gulf War Illness.

I see in this moment an opportunity for VA leadership to broaden its response to the PACT Act to include Gulf War veterans health and benefits problems, whether or not they were addressed in the Act.  Specifically, VA should recognize that Gulf War Illness is a chronic multisymptom illness entitled to a presumption for care and benefits purposes under existing law, as determined by the National Academy of Sciences in its 2010 report, Gulf War and Health, Vol. 8.

While I’m long out to pasture, it pains me that some VA staff continue to pull the wool over the eyes of VA leadership that this finding is being addressed when it plainly is not and has not been for twelve years.  That failure to accept the NAS finding remains the core GWI problem at VACO, not training, and produces the greater than 80% rejection rate of GWI claims.

If Secretary McDonough has any doubts about the validity of this statement I would be extremely pleased to hear from him or his staff.  
Sincerely,

Jim Binns
Chairman, Research Advisory Committee on Gulf War Veterans Illnesses, 2002-2014.
602-684-0116
Phoenix, AZ





Sent from my iPhone

On Dec 16, 2022, at 5:38 AM, Kirt <kirt@gulflink.org> wrote:
 Dear RAC, and Sec Denis McDonough

I attended the PACT act role out at the Temple VAMC on December 15th 2022.

Starting right off, great turn out for the circumstances, and the staff there are some
of the finest folks the Temple VAMC has ever had. The OIF element over the years
ended up bringing in some unique folks with good intent. So they really tried and
it showed with the quite civil circumstances.

For me, I played observer, and did not take pictures to give these folks a chance.
The turn out was such that I didnt want to poison this venture in any way. But,
I also didnt see a long term outlet for the veterans to address concerns publicly.
No public forum, no open room discussions. This was meat to be solemn, quiet,
and one on one.

What was not understood by the veteran crowd was how much of this was contingent
on Environmental Health and the Registry programs. There is much confusion about
a Toxic Exposure exam because it presents itself as a separate entity, and that in the
end it comes back to Gulf war registry or ABHOR. Which also behave every different
from C&P exams even though they try to bridge this. I would know having spent the
last year doing the whole thing start to finish. having finally concluded my ABHOR exam
last week. Which in the end was every bit as insulting as my WRIISC exam months ago.

Im writing the RAC because your the only game in town, and no other outlets for Gulf
war vets. This ends up being healthcare, benefits, and research issues. Because of the
new HOME system and mutual computer programs bridging EH, VHA, and VBA. As I
got the demonstration of the software during my ABHOR ( Burn Pit ) exam.

Im in a strange paradox here in VISN 17 between the ABHOR, Camp Legune, PACT act,
and other over laps that isnt well defined here just yet. I spent the roll out day mostly
observing and getting a feel for the situations. But, there was a huge effort to keep this
individualized and not a public forum style event. But, Gulf War is very much a part of this
and it was played down as well. We are mentioned, and it stops there.

I never heard back from VA on the data base issues with ABHOR exams and Gulf war
vets needing help. Like with the CRUR or auto populating location fields. As far as I
can tell VA blew this off. Who cares if we get past this screen. HOME never got back
to me on this. Which clearly means VA does NOT care.

As far as EH in Temple, they panicked when your office contacted them about this
and made it about them. I had to spend time on the folks with the VAMC assuring them
that my concern was with policy from above, not how the Temple VAMC followed policy.
But, I also made sure they got to observe my communications with DC and see how
it was handled. Because in the end, its up to VISN 17 to make this work down here.
These folks are on there own down here with a broken system they have to use. As
they see ABHOR in action with me.  In fact, EH here has the best team ever but its
crippled by policy and procedure. Its not fair to them and will drive off good folks.

My concern is, what the HOME database will provide medical research and benefits
given its very narrow window and limited collection methods. Everyone is being
funneled through this portal, but its not collecting consecutive long term hard evidence.
Soon, the media will pick up on this and then the NIH ABHOR report.

Ive run the gambit in all this from Gulf War Registry, WRIISC referral, WRIISC exam,
and ABHOR exam in the last year. I have fresh insight from the bottom up on this
and other aspects. Yet, Im still being ignored like its resolved. Nothing has
changed for me, and I really didnt benefit other than fresh insight. If anything, my
symptoms have returned and Im pretty sure what head way I made Ive lost to some
kind of infection that has thwarted a year of improvements. A virus, bacteria, or parasite
that has evaded detection by currents standards and these very programs. Im really
tired of being miserable for 30+ years now with this damn thing.

I have to run this through the RAC which will end up making this very material part of
there up coming meeting. But, pretend I myself dont exist and not address me. So damned
if I do, and damned if I dont. No where else to go with this.

As you can tell, this story is growing. Its getting around VISN 17. Its getting to vets in
the room that talk to me at these events. Each PACT act event you will have me in the
room trying to find middle ground. Only, by then people start getting there rejection
letters from VBA and not finding answers at VA EH. I see big problems ahead in
2023 as VA tries to lump too much into one heading and find its stalling due to complexity.

I cant save the system, but I can help save VISN 17, and give them a chance. At some
point they will see the bottleneck, and speak up in unison. This is all paradoxes for me
having to hurry up, and wait more for others to catch up. Im there, I just need others to
see it for themselves.

We need a GWI healthcare and benefits representation in DC. We havent for along time
now. We need public monthly and annual reports telling us are present conditions including
mortality that is implied by the PACT act. We need to resolve the CFR 38 ss 3.317 service
connection debates. We need actual interaction with VA that shows someone heard us.

I have so much more to add, but need to keep this manageable. Im not going away, and
so far I dont think Im raving either. Lets work on improving all this, and stop the one sided
firewall VA has up right now. 2023 shows change is coming either way.

Thank you for your time and consideration.

                                                                                                        Sincerely
                                                                                                        Kirt P. Love
                                                                                                        Director, DSBR
                                                                                                            Former member VA ACGWV
                                                                                                            https://www.va.gov/gulfwaradvisorycommittee/
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