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/
http://gulflink.org
P.O. Box 414
Crawford, Texas 76638