A Desperate Plea for Gulf War Veterans to Rally! DC
SEPT!!!!
Forward to all email lists...........post on
websites...forward to other gulf war veterans, Vietnam
VETERANS, etc Widest distribution please
I really am begging you! What we do with this
committee counts for all the others out there!
I have kept the battle going and a few others that
refuse to give up! But WE Desperately need you guys
with the bronze stars forward. WE need the combat
veterans and support personnel and the officers too!
I am just a nurse officer old Vietnam Era and Gulf
War vet at the border that stood for all that couldnt................I
did what I knew was right and honorable.....moral and
ethical....
I am calling you guys back out because WE simply can
not do it without YOU and the rest.
I have had faith we could make a difference since I
helped the first group of vets go forward in 1993 and
from my first trip in April 94. Without faith, a bit of
fight, and face time we have nothing
left................
I went to every hearing...pushed Shays to have the
vets tell their part and not the VSO's...I went to every
PAC meeting in DC, the one in Atlanta...the one I forced
in CO....the one in Chicago....I went to every PSOB
meeting....I went to every one of the IOMs that was
possible...........I went to OSAGWI town hall here in
CO....and wherever I could.............I went to every
RAC except for one in Orange New Jersey...This constant
battle since 1993 has left me low extremely low at
times...but at the lowest time I got another call for
help that kicked me in to gear. I am trying to do that
for each of you now...kick into gear!
I did not do it for glory...................
I lost my mom, uncles, brother, and brother in
law................and missed time with my extended
family that can never be replaced ever!
I lost time with my husband(dont know how he has put
up with me and stood behind me standing up as I
have)....lost time with my only child my
daughter.........who said mom you love the vets more
than me and you cannt be a mother to all of
them...........
I did it because it was what I could do to try and
save lives and to give each of you the dignity and care
you DESERVE that you EARNED!
I was there to give nursing care..........it just
wasn't enough! I went to battle the multiheaded snake
not for me but for you and all the rest.
I have not often begged like I am doing now!!! This
is when we need you and others to come make that
impact!!!!!
WE the few of us that have stood ....we are a few
WE NEED You and others please!
Now we are pushing to try to get the new committee
which right now is scheduled for Sept 24-25 to move up
their date to closer to the RAC meeting and release of
their report on the 16th.............I am kicking the
hill for a hearing on 17th to Receive the RAC
report.........
WE need the public comment to the new committee Gulf
War Vet Advisory committee on their second meeting to
push them now to action as they start!
I will let you know if we are successful in pushing
the committee Gulf War Veteran Advisory Committee to
move up their date from Sept 24-25............we those
with groups are writing not only the committee but
Secretary Peake to make them meet closer to Sept 15-16
RAC meeting.
Please I beg you....I need you and others out of your
bunkers! Please help all the rest of the veterans of
the Gulf War by coming out ONE MORE TIME
WE can make a difference with you all but not
without!
We have lost a lot of our gulf war vets 90-91. We
must honor them by doing what is right for the living.
WE have those with ALS, Brain cancers, other cancers,
MS, Cardiac, Renal problems, and liver
problems..............We have those with undiagnosed
illness....WE have those that have won their claims to
varying degrees, we have those that have given up on
claims. WE have those in wheelchairs and those having a
hard time getting out and functioning at all. WE have
those that are still walking....those using
canes...those who have lost hope. Will I refuse for us
to go down this way.........I refuse to lose people
anymore without a battle and faces they can see in front
of them!
I refuse to give up on getting us better---the best
care---the best attitude---the acknowledgement that this
is real PHYSICAL Damage! I refuse to give up on finding
treatment that improves our quality of life...that helps
our memory and neurocognitive...our fatigue...our
pain...our autonomic nervous system dystegulation....our
autoimmune problems...and for all degrees of disability.
It just simply can not go on and we must all stand to
make a difference.
I need all of you to listen up! I need you to get
out of your bunkers and come together to make a
difference for you and your buddies. This is what it is
about!
Now thru the 17-18 years we have ebbed and
flowed....we have hit a low point but I am asking you
all to respond now! Please respond
DSNurse1@yahoo.com
....or on these
postings!
I have looked up hostels and cheaper hotels ...I have
checked them on line and will get support to check them
on site....will range 25-35 a night I think.....some of
the hostels are 4-6-8 to a room bunk beds. WE even
have one person checking to see if we can use a field
house at a university or school...maybe call in the RED
CROSS to help they know how to set up shelters....I have
thought of campsite close in to DC....if we had to camp
out....or do that between the meetings if they dont move
them into closer time periods.....I have thought of
setting up tents by the wall or the mall.............
We need to check on bus and train into DC....or form
groups to come in together to offset travel cost.
WE need 15-50 to make an impact will you be one of
them? We could use more too!
Will your name be on the list?
WE cannt do it until we know you all will answer this
call!
Vietnam Veterans and groups I need your help
please...get the word out to all the gulf war veterans
you can find....encourage them to come and help us make
this happen. Write Secretary Peake and ask him to have
the new Advisory committee meet sooner than SEpt 24-25
ask for Sept 18-19 or even Sept 22-23.....so that our
veterans can attend the Sept 15-16 VA RAC GWI...a
possible hearing on Sept 17th(if we can get the House VA
to receive the VA RAC GWI report from Mr Binns, DR Lea
Steele, and Dr Roberta White) and then have the new VA
Gulf War Veterans Advisory Committee on the 18th and
19th or even 22-23....
The hill is expected to finish by Sept 26th. We have
not had a hearing this year on gulf war veterans. WE
want to be heard before the election! And should I have
to remind all that Iraq invaded Kuwait on AUG 1 1990.
The urgency of our moment is now and is well past
time---18 years!
I know we have leaned pretty heavy on you our older
brothers and sisters and mothers and fathers and uncles
and aunts.......I am asking one more time for your
assistance!
Lets kick some ass while we still can! If we do
nothing we have failed each other!
Love and Respect to all
Denise
DSNurse
NEXT MEETINGS IMPORTANT
SEPT 15-16 DC RESEARCH ADVISORY COMMITTEE ON GULF WAR
ILLNESS
SEPT 24-25 DC ADVISORY COMMITTEE ON GULF WAR ILLNESS
WE NEED GULF WAR VETERANS AT BOTH OF THESE MEETINGS IN
OVERWHELMING NUMBERS!!! THE RAC GWI WILL BE RELEASING
THEIR HUGE REPORT FOR 08 AND IT IS IMPERATIVE WE SUPPORT
AND BE THERE!
THE GULF WAR VETERANS ADVISORY COMMITTEE WILL HAVE THEIR
SECOND MEETING AND WILL HAVE THEIR PLANS TOGETHER ON HOW
THEY WILL PROCEED IN THE NEXT 18 MONTHS. AGAIN IT IS
CRITICALLY CRITICALLY IMPORTANT THAT GULF WAR VETERANS
ARE THERE AND PREPARED TO SPEAK IN PUBLIC COMMENTS!
PREPARE YOUR PUBLIC COMMENTS 2 PAGES
SUGGESTED INPUT
YOUR NAME, UNIT, MOS, WHERE IN THEATER, IF YOU SAW
SOMETHING WHILE THERE THAT IS PERTINENT TO HEALTH NOW
WHAT YOU HAVE BEEN DIAGNOSED WITH AND WHAT BENEFITS YOU
RECEIVE
THE CARE IE TESTING, DIAGNOSIS, CARE AT VA
HOSPITALS.....PROBLEMS...IDENTIFY THEM
THE PROBLEMS YOU HAVE HAD IN BENEFITS CLAIMS
AREA....IDENTIFY THE PROBLEM
YOUR FRUSTRATIONS....PROBLEMS
YOUR SUGGESTIONS FOR IMPROVEMENTS TO BE MADE! WHAT YOU
WANT TO SEE DONE!
CONTACT ME RE IDEAS, NEEDS, PROBLEMS ETC
DSNurse1@yahoo.com
HERE IS WHAT I DID FOR FIRST MEETING....
U.S Department of Veterans Affairs Advisory Committee on
Gulf War Veterans
Meeting of June 17-19, 2008, Washington, DC
Comments by Denise Nichols for National Vietnam and Gulf
War Veterans Coalition
Thank you for the opportunity to provide public comments
for myself and the National Vietnam and Gulf War
Veterans Coalition. This is a summary provided in
advance of the meeting that I intend to make during this
first meeting of the newly created Advisory Committee on
Gulf War Veterans. There is so much to say that time
will not allow at this first meeting.
Function and Process of Committee: First concerning the
actual conducting of this advisory committee we have to
encourage you to set your schedule at least 6 months in
advance so that we have the dates and places of the
meetings. We along with others will encourage you to
travel the country and not just stay in DC. We will
encourage you to have the VA truly put all efforts out
to the Gulf War Veterans of 90-91 to notify them of the
meetings using a full press relations in all media but
additionally that the veterans are notified in writing
or phone from their local VA hospitals especially if the
committee is to meet in a certain location. We simply
must also have a website devoted to this advisory
committee that is robust and kept current and active.
We also want to highly encourage you to have the VA open
fully their use of video teleconferencing abilities for
these advisory committee meetings. In that way gulf war
veterans could go to their local VA’s auditorium and sit
with VA Personnel and be hooked in live and be able to
offer their public comments. But that doesn’t mean you
do one and not the others….it means you do all you can.
We are due for VA outreach that never came for us and
let it start with this advisory committee.
You need to hear directly from as many of the veterans
as possible to truly get the input of those hundreds of
thousands. I am aware that Walter Reed eventually had to
have customer relations training from Walt Disney
enterprises. VA may need that effort too.
The cost of accommodation and travel is indeed high and
something needs to be done to assist our(veterans’/family
members/support personnel) ability to participate in
these fact finding advisory committees. These are ill
gulf war veterans who face barriers physically and
financially unable to travel certainly at the cost of
travel today and the cost of lodging. Just as Congress
initially did not assist the veterans that came forward
and eventually did start covering that cost. At the
least the VA and DOD could help by letting the survivors
and the veterans have access to any DOD/VA air
transport, travel funds and to rooms(commercial and or
military or unused veteran hospital space)(DOD could
provide military shuttle/buses if available). Private
non profit organizations need to reach out also to help
us in this effort.
The advisory committee must recognize that this group of
veterans has considerable neuro cognitive and memory
problems that impact the ability to write testimony and
to be able to function minimally at home. This group
needs assistance in coming to the meetings and needs
understanding when there is a requirement to provide
written input before we arrive.
I don’t think VA fully understands the Neuro cognitive
difficulties that the Gulf War veterans are encountering
at all. I can tell you that it makes me tear up when I
see how my fellow veterans have deteriorated in mental
and social functioning because of the neuro cognitive
difficulties alone. I, myself, was an above average
professional nurse with a MSN who had been in critical
care nursing and on faculty at Nursing Schools with a
number of large universities. My decline in ability to
function is scary and has cost me my lively hood … my
profession and impact my family by decreasing us to a
one income family. I try my best to hide it from family
and associates but I know the difference and people that
know me know the difference. It hurt when I came home
from a trip to DC and was trying to help my daughter
when she was in elementary school and I realized I was
having problems with basic math! After I got her to bed
I cried and I am not one to cry easily. My life was
destroyed and that impacts on so many levels.
These problems affect the abilities to keep up with
financial matters to navigate around our home towns and
to function in a normal life much less to work our
claims to get help!
I suggest that you consider this when you require
written submissions before meetings. I suggest you also
take audio/video recordings of the veterans.
I have had veteran’s wives call me to cry on my shoulder
for support when they tell me that their husband of
decades were caught in the wives’ purses and when asked
why they said I couldn’t remember your name so I was
looking at your driver’s license! It is like something
has caused extreme early Althemziers. It is dismaying to
me that VA health professionals have not evaluated the
neuro cognitive problems or if they see it they don’t
report it. If veterans tried driving trucks for a living
they had to quit that job because they would get lost,
their driving abilities at night were affected, and they
had to have a spouse accompany them to help orient them
etc. There are so many example cases and not enough time
for all the details. That is why a great deal of our
gulf war veterans are not seen at meetings etc they have
bunkered down totally!
We hope and pray that this committee sets a full
published time schedule, meeting schedule to include
place and time and the issues to be discussed at each
meeting so that recommendations for short, medium, and
long term can be made as the committee continues in its
time schedule and that corrective action can start and
continue monthly instead of waiting for any 18 months.
We also hope that the door is opened to make this
advisory committee continue past that 18 months until
all issues are addressed, corrective action is taken,
and reevaluated for further changes in the future. There
needs to be no end date to either advisory committee we
must continue until all issues are corrected and
reevaluations made. Neither of these advisory committees
should be PAPER TIGERS but REAL ACTION TEAMS to Address
the needs that were and are unmet and that this is
indeed a continuing commitment that needs to be made for
the veterans that paid the price and earned the respect
and all efforts that can be made each day of the year
and for all their remaining time.
I also want to recommend that this ADVISORY COMMITTEE
HAVE AN Additional EXPERTS ADVISORY COMMITTEE as the VA
RAC GWI has in place. This group might include but not
be limited to: a couple of more veteran leaders that
have been active on gulf war illness issues, a lawyer
with claims knowledge, a physician at least 1 maybe two,
and a couple of medical care professionals(nurses), a
former military personnel administrative person, and
veteran officers that served in the Gulf War with the
Army Preventive Med Team. These individuals would be
advisors to the main committee.
Overview: The scope of the problem is large with over
1/3 of those that served in the 90-91 having sought VA
care/compensation. This is truly a huge number not seen
prior to our time in history as referenced by Ross Perot
when he testified to Congress. When we came home and
started coming forward for help with our dramatically
changed health status we were all met with denial that
something had truly affected our health, we were called
wimps, we were ignored and brushed aside, and we had to
deal with the doctors‘ eyes glaze over when you say gulf
war illness. In medical terminology-- we were TURFED OUT
to Psych just to get us away. That was certainly not the
way to treat patients but more devastating is that this
is still occurring after 17 years.
We encourage the VA thru this committee’s actions to
finally take the Proactive Stance that has been missing
to stand up for the Veterans and honor them. Sadly we
have already lost to many lives in 17 years and it is
time for the truth to be given and the veterans of the
gulf war to be truly honored.
This group of veterans was indeed differently they asked
for DIAGNOSIS, TREATMENT(the Best), AND FAIR
COMPENSATION. We have asked doctors and researchers to
find the best diagnostic abilities to be found and to
find forward leading treatments for us. We earned this.
We also are aware by standing firm we indeed are still
serving our nation. What we encountered in the gulf war
of 90-91 was hazardous exposures that could occur to the
civilians here or elsewhere, it behooves us to strength
the push forward not just for us but for National
Security.
To be honored fully it is imperative that the Secretary
of the VA and the Administration (presidents current and
past) acknowledged us and start with an apology to each
of the hundreds of thousands of veterans that have
endured and to the families that have lost their gulf
war veteran.
It must be acknowledged that these advisory committees
that the VA has was the result of the effort of the
veterans themselves in desperation to get corrective
action initiated. In this case 17 years too late. AS we
all know the proof is in the process that is started
here today and the actions that follow.
RESEARCH: In the area of Research we want to offer our
full support for the VA RAC GWI the committee members
are to be complimented in the work they have done and
the work yet to be done. The VA needs to support them by
using the live video conferencing abilities that it has
available so that researchers and doctors and the gulf
war veteran patients and their families can learn and
share together breaking developments in research
findings.
WE ask that you also speak up to help this happen. We
ask that the VA fully support the RAC that has been
doing historic work with truly some of the best
scientific minds in an effort to unravel the
complexities of the Gulf War illnesses. We ask that the
research efforts be strengthen through this committee’s
endorsement, the VA, the DOD, administration, and
congress to support the funding requested not just from
VA but DOD’s 2/3 commitment that was removed in 2001.
Education and Outreach: It is critically important that
we find an effective means of education for the
veterans, their families but most of all for the medical
personnel and the claims personnel .
The VA Newsletter and the DOD deployment quarterly were
mostly filled with propaganda and did not provide the
total breathe of information that was available. Then
the VA dropped the publication all together. The
conferences the VA/DOD were having were also dropped.
The guidelines for medical professionals/Drs is so out
of date it isn’t even funny and does not come close to
addressing items from research or recent findings
concerning care and treatment of fibromyalgia and
chronic fatigue.
It is reprehensible that the veterans and various
service groups had to develop their own information
systems in order to try to help the veterans. These were
sick and ill gulf war veterans trying to help each
other!
Education of the medical staffs was nonexistent. The
truth and medical findings were being brought to those
staff by the veterans themselves! The staffs were not
prepared and were restrained from thinking by the denial
of the DOD and the VA policy administrators and even the
White House Policy Formation, there is just no way to
explain the situation any other way! To say that the
gulf war veterans were dismayed and disheartened and
angry is a understatement!
When you go in because your health has changed and you
seek answers and all they wanted to do was at all cost
not get into it….to send you away….to turf you out to
the psych because that is what they were encouraged to
do. They were not encourage to watch us closely and care
for us. It all started with the DOD denying everything
and the VA following the lead. I felt sorry for the
doctors. They were not given the training or the
latitude to address our concerns. The medical care
professionals were betrayed by the system too.
An example of this is when I was involved as a coauthor
of a peer reviewed medical publication. The
Hypercoagulation in gulf war veterans was documented in
2000! When I brought the paper in and my own lab results
to my VA in Denver I asked please read this call the
physicians and the other authors of the paper and I gave
them the phone numbers.
I asked for more diagnostic tests for myself and others.
I asked for treatment as proposed by the Doctors that
wrote the journal paper.
I begged that they help me and my fellow veterans
because as a nurse with the experience I had I knew what
hyper coagulation could do to a person’s organs and that
it could lead to death! The Doctor refused, I asked
again the next visit thinking she needed time to follow
up etc….well again I was refused and to make matters
worse this doctor a hematologist even offered me a psych
consult!
I then found out the lab director at that VA hospital
had been an editor of the peer review medical journal
that published the study. At that point is when I gave
up on trying to get my own care at the VA, I would not
subject myself to a system that was not responding to
any degree of responsibility. My blood pressure, my
whole being could not take that. I decided I only had so
much fight to give and that I would continue to put my
efforts at the national and international level and use
all the tools and resources available to battle the
broken system from the head of the multiheaded snake.
It is important to note that the FIBROMYALGIA AND
FATIGUE CENTERS OF AMERICA in 12 locations in this
country are testing for hyper coagulation and treating
it!
Why can’t the VA access the education and share medical
care, testing and treatment that is available to
civilians?
I know a group of environmental doctors that offered to
help in 1991 to the VA Secretary at the time and were
turned down! Finally after 17 years one group of these
doctors have been granted a research study funding and
the small treatment trial will be initiated soon.
There is a former Army physician that is board certified
in Anti Aging that is rescuing gulf war veterans that
can pay, he is also willing to do whatever he can to
help VA but no takers yet.
The break appears to be at the policy level and starts
with records still classified and missing records of
vaccinations. The exposures we had starting with the
vaccines, to chemical and pesticide, DU, oil fire
particulates, sand contamination, biological and endemic
disease data have been denied and hidden by
classification.
The administration must move now to declassify fully the
records of what occurred in our war after all it has
been 17 years and Saddam has now been removed at a huge
cost to this nation. It seems an appropriate time to get
that done NOW!
That information disclosure would acknowledge what Price
the Gulf War veterans of Operation Desert Storm have
paid. This may also be affecting our current OIF
veterans and forces. That disclosure could help
physicians, researchers, claims personnel to experience
the change of attitude needed and to get the knowledge
needed to meet the needs we have had and will have in
the future. It would also help the doctors know what to
treat for and open their abilities to fully evaluate
each of us.
We need the doctors and medical care providers to
document better in the clinical records what works and
doesn’t work and by setting up some basic data
collection tools be able to contribute to research
efforts and even be a part of that research by
highlighting unusual lab findings, diagnostic test
results, treatments to consider, documenting possible
complications, documenting real complications, and
documenting what led to gulf war veterans deaths. This
information from the clinical world must be shared with
the GWRAC. It would provide invaluable information.
Learn from the errors, make swift corrective actions,
plan and think smarter in the future is what we ask.
DECLASSIFICATION IS ESSENTIAL AND SHOULD BE TOTAL to
help the surviving Gulf War Veterans! Declassification
would allow the doctors to really diagnose and treat us
more knowledgeably.
Many of us feel that we have just been placed in the
EXPECTANT CATEGORY since we returned home. BUT WE ARE
NOT ALL DEAD AND WE NEED YOUR HELP!
Outreach: Education for the veterans and their families
is critical! This can only be effectively done if we get
all the truth! There are all levels of disability
minimal to extreme(critical). The need is massive!
We didn’t have a hotline for gulf war veterans so we
gulf war veterans did our own! I took so many calls on
suicide attempts. Try doing that with no resources! Try
activating emergency response in different states
without VA or DOD assistance!
One case we utilized the officer of the day at a
military base close to one veteran. The officer on duty
was a chaplain. He made the call and sent an ambulance,
the veteran was stabilized at the base ER, and then
transferred to the closest VA. Later in follow up calls
we found out the Chaplain officer had been reprimanded
for assisting. WE have activated ambulances to transport
attempted suicides to the VA and then find out later the
veteran was charged for this financially.
WE have been called upon the deaths of gulf war veterans
by the family offering the body for donation for
research so that answers for those alive might be
benefited but no system was in place especially on
weekends! This is when we started asking researchers to
give us a protocol so coroners could help but we had no
facility to store samples and who was to pay for the
expenses incurred. That is why we pushed for the brain
bank but we need other banking of other samples too.
This information on protocol and the brain bank must
become common knowledge to every VA Doctor, nurse,
patient, and family member.
We found that coroners that got involved and made
statements that it was gulf war related faced
retaliation and lost jobs. Just as VA physicians and
researchers that had stepped up to the plate faced
retaliation also. Outreach to these professionals need
to be made and restitution efforts made. You destroyed
careers of people that tried to do the right moral and
ethical duty for us gulf war veterans.
Was this a cover-up well the facts of retaliation seem
to be the truth that answers that question.
You have not reached out to the Operation Desert Storm
Veterans and their welcome home was not what we expected
when we got to the VA. When we presented with our change
in health we were basically told nothing is wrong with
you. I am not sure how to describe the feelings,
frustration, and anger.
I want to say because my time is limited that it is time
that these advisory committee meetings are
video-teleconferenced into each VA live with veterans
able to be there with the staff members in the VA
Auditorium by their home and to be able to comment on
the videoconference. But that doesn’t mean you don’t go
out to them….it means you do both. We are due for VA
outreach that never came for us. And it also speaks to
the Education that is needed throughout by all parties.
MORTALITY: WE need the ones of us that have died since
1990-91 to be acknowledged by a true accounting not by
numbers but by a true death registry by name, age unit,
location in theater and cause of death. This needs to be
an openly accessible to all database provided by the VA
with a mechanism to also capture those veterans of the
gulf war that never went to a VA or had a VA claim file
number to put on death certificate. These were
individuals that died and should be honored!
Their deaths and mortality data need to be examined in
depth. Did their neurocognitive disorders lead to auto
and other types of accidents? Interviewing the family
members of the veterans is essential not only after a
death but during his care at the VA.
The families of those that died outside the VA system
must have a way to enter the data to the VA with
appropriate paperwork and have assistance to do this.
Nationally death certificates need to identify a veteran
by conflict or era served in whether they had a VA file
number or not. So a national law needs to be done!
We thank
www.Honor the Names.com for doing something
that the VA should be doing fully! They at least are
trying to capture all obituary data and place it online.
We need to hear from their survivors first and be sure
they have been adequately cared for and recognized. We
hope that this committee will honor them by devoting the
next meeting to that task and the VA needs to consider
how to immediately help these survivors and veterans as
this advisory committee is in process not after a report
is filed.
Through this complete review of MORTALITY more can be
learned in research and in care for those that still
live! It is critically important that this be done
because it will help the doctors, health care providers,
veterans know what trends to be alert to in order that
more effective screening can be done for the veterans ie
Cancers…. This should be the proactive approach in
regards to both Mortality and Morbidity data!
Morbidity:
REGISTRIES /Data Base for All illnesses that gulf war
veterans are experiencing should be ongoing and open on
the internet and available to all.
We ask that registries be established for the
undiagnosed category, for the diagnosed neurological
conditions, for the cancers(all), and all the other
diagnosed conditions(every body system). This
information needs to be given ASAP by the VA and the
process needs to be transparent and open to the public.
It is through this method that advances in our
diagnosis, care, claims and research efforts to help us
can be accomplished fully.
It is a proactive step that the VA can take and does not
compromise identity it is statistical data.
Through this information and statistics data base
medical care providers can actively monitor the veterans
with this additional information to keep reconsidering
and updating their physical and diagnostic assessment of
each veteran they are assigned to give care.
The patients and family members also can be aware of
what warning signs to watch for in regards to the
statistics. That is what patient education is all about
and this is a starting point for health care providers,
patients, and family members. This should not be held
from us like a top state secret this is our very lives
that we are living and we need the statistics to guide
us and the health care professionals.
Note these registries must include the deployed and the
non deployed gulf war era veterans. We have non deployed
sick either from vaccines or secondary contamination
from returning equipment that was not decontaminated.
Health Care:
To get true health care the facts and truth need to be
fully known. Retraining will need to be done in a
systematical and thorough manner. I encourage that gulf
war professionals that served and know the truth at
every level be activated in assisting in this endeavor.
Policy will have to be rewritten from the Administration
to the VA to all levels of government and be transmitted
publicly so that the greatest number are informed. That
is the true starting point!
I have had doctors in tears before when they were
refusing to do more. I have had doctors that finally get
it and watched their reactions and yes their horror at
what has occurred. I have had doctors tell me their
hands are tied! This is a broken system and needs so
many efforts to put it on the right course but it can be
done by full knowledge, support in all forms, and true
leadership.
I have had doctors tell me thank you for providing
information because you provided it I was able to save
the gulf war veteran that showed up in the ER last
night. This is criminal and unlawful withholding of
information that leads to unlawful omission of care!
It is a shame we ill gulf war veterans have had to do
this one doctor at a time….and lives have been lost
because of it.
I don’t know how but I still have a small bit of hope
like a flicker of a fire about to die waiting for the
fuel to come to brighten and warm the fire for all of us
gulf war veterans.
Care starts with restarting the VA centers that were
gulf war veterans referral centers in 1991-5.
We also need to have full Gulf War Veteran Health Care
and Integrative Research to Medical Care Centers located
with VA hospitals in cooperation with Major Medical
Universities that can be operated jointly to transfer
medical findings rapidly into medical care for gulf war
veterans.
There are at least 129 medical schools and 155+ VA
hospitals that need to be considered. We need them in
nine locations throughout the country to start. There
are 2 risks centers in the upper east coast
currently(not counted in total).
WE need one in (Duke Univ.) North Caroline, one in the
south east (GA), one at Ohio(Wright State), one in
Illinois, one in Colorado, one in Idaho, one in
Washington, two in California(LA-San Diego) and (San
Francisco) as a starting point. My suggestion is in an
attempt to have at least one in North-South and East and
West geographical locations that are easily assessable
for veterans that will speed the changes in medical care
brought on by breaking medical research.
These are need to be linked into a video teleconference
network with all other VA hospitals to speed
communications and help spread knowledge in changes in
care through research.
Their should be one doctor and a team of health care
individuals overseeing the overall care of gulf war
veterans at each VA hospital. They need to review to see
what trends they are seeing and share findings on gulf
war veterans at least every two months. They need to
consider what health alerts they need to give out to
gulf war veterans. For example we find many veterans
that get stabilized and then get further exposures to
paints, pesticide spraying etc then get much sicker. The
health care providers should be forward thinking and
send out alerts….things to avoid, things to report to
their health care provider, actions that can help once
the additional exposure has occurred, and other helpful
actions. This certainly has not been happening or even
considered for 17 years!
There should be a task force at each VA hospital that
includes the gulf war veterans to identify problems,
make corrections, and share their insight all the way to
the VA headquarters, to this committee and to the VA GWI
RAC.
The VA needs to address the need to compile data on
vision problems the gulf war veterans are having. It
would be normal to expect this to occur with MS, ALS and
other neurological problems. And good eye exams can help
many times to diagnose other health problems. I suggest
that the VA at least allow gulf war veterans to be
evaluated by the opthalmologist so base line data can at
least be collected , shared, compiled, and reviewed for
needs that have not been addressed by VA.
The VA also needs to consider doing the same re for
dental assessment needs on gulf war veterans. In the
area of eye and dental unless you are 100% you don’t get
in and that is wrong we need assessment exams done. The
chemical damage could be altering our dental problems (
that gulf war veterans are complaining) and no dentist
at VA knows because you haven’t even assessed.
The VA doctors at each VA needs to review their records
for the Desert Storm Veterans at their VA and report now
and at regular intervals the diagnosed conditions that
are occurring and the cause of death of each of the gulf
war veterans at their VA hospital. A quarterly mortality
and morbidity report on Desert Storm Veterans. These
reports need to be compiled at each region and forwarded
to VA headquarters, to this committee and to the VA RAC
GWI. In this way trends ie Cancers, heart attacks, renal
or liver problems etc can be reported as trends to be
aware of in Desert Storm Veterans. Through this
education, policy changes, health care alerts, and
proactive health care screenings can be initiated. This
would be an excellent way to start the Operation Desert
Storm Task force at each VA and regional VISNS. Of
course the information would be shared at those Task
Forces and also at in-house medical staff meetings.
This information would also be critical to be shared at
each VISNS-regional- claims department for their
updates.
Claims.
There is on the committee very knowledgeable VSO claims
benefit personnel but yet no lawyer(civilian) that could
help with expertise to examine the problems and make
valid suggestions.
There is a problem when delays and denials pile up! An
example is a very gulf war era veteran that I heard from
before I left to come to this meeting. She is very ill.
She herself is a paralegal who is very versed in claims
and legal processes. She has a great deal of medical
knowledge. She has just received her fourth denial and
will be homeless soon unless something happens to rescue
her.
She is just one example. Every day each of us receive at
least one email or phone call for assistance,
information, guidance or other referral information so
the need is not being met even after 17 years.
Something must be done when a veteran identifies that
they are nearing the point of homelessness due to health
and claims denial and a process to help those veterans
as a high priority has to be initiated!
Remember these veterans have neurocognitive decline in
abilities and are physically ill they need direct legal
assistance now or we will have more physically ill
veterans on the streets. More family disruption and
break ups due to this denial and delay will occur. More
Suicides will occur.
The burden of paperwork on the sick veteran and the
family must be removed. Temporary approvals or financial
supplements that cut through the lines and the burden
must be implemented now not in months or years. Active
Triaging of the cases must be done with supplemental
medical personnel or personnel administrative prior
service people would be a beneficial step. It may mean
reviewing the records and making phone call assessments
but something has to be done!
The ability to access care at the VA has to be given
until their claims are settled.
Conclusion:
As a 20 yr retired AF veteran of the gulf war and having
served as a nurse officer I feel betrayed. I feel that
since the war my job and my duty to my fellow veteran
patients have never ended! I am ill also but someone of
the medical profession and as an officer had to stay
involved and fight with all my knowledge and skills and
more for our gulf war veteran patients. It s a 17yr war
so far, I ask how much longer? The answer is until there
is real medical care with the right diagnostics and care
using all research that is coming forward.
I have been there as the nurse who was there for them
then but it has been 17 years and so many calls at
different hours of the day and night. I pray that not
only you but every level from the President to the VA to
every federal agency, every member and staff of the
capitol, and the public hears our desperate call for
action. We feel justifiably that we have been deemed the
silent expectants of Operation Desert Shield Storm.
I don’t know how but I still have a small bit of hope
like a flicker of a fire about to die waiting for the
fuel to come to brighten and warm the fire for all of us
gulf war veterans.
----------------------------------------------------------------------------------------------------------------
Upcoming Committee meetings are scheduled for September
15-16, and November 3-4, 2008. The September meeting
will be held in Washington, D.C. Additional meeting
details will be posted here as they become available.
Committee meetings are open to the public and include
time reserved for public comments. A sign-up sheet for
five-minute comments will be available at the
meeting. Members of the public who speak are invited to
submit a 1-2 page summary of their comments at the time
of the meeting for inclusion in the official meeting
record. Individuals do not need to preregister to
attend or speak at the meeting. However, when meetings
are held at VA headquarters or facilities, all attendees
will be required to check in and show valid ID at the
security desk.
The Committee welcomes suggestions and information from
veterans, physicians, scientists, and members of the
general public regarding its mission.
http://www.va.gov/RAC-GWVI/page.cfm?pg=21
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Peake to
Hear Their Concerns, Issues
WASHINGTON --
Veterans who served in the
Southwest Asia theater of operations during
1990–1991 will have their own special advocates before
Secretary of Veterans Affairs Dr. James B. Peake, thanks
to a new advisory committee Peake established to respond
to issues unique to them.
The 14-member,
independent panel will advise the Secretary and the
Department of Veterans Affairs (VA) on the full range of
health care and benefits needs of those who served in
the conflict.
“Gulf War veterans
made an invaluable contribution to national security and
peace in a volatile region,” Peake said. “This new panel
will ensure that VA benefits and programs adapt to the
needs of these veterans, just as our services have
adapted for veterans of other conflicts.”
Serving on the
committee are Gulf War and other veterans, veterans
service organizations’ representatives, medical experts,
and the survivors of Gulf War veterans. Members were
selected to provide a variety of perspectives,
experiences and expertise.
The
committee will be chaired by Charles Cragin, a retired
Navy captain, who has had several senior level positions
within the federal government, including Acting Under
Secretary of Defense for Personnel and Readiness and
Chairman of VA’s Board of Veterans’ Appeals.
In January 2002, the
Department created an advisory committee to assist VA’s
secretary on research into the medical problems of Gulf
War veterans. That older committee will retain
responsibility for research involving veterans of the
1990-1991 conflict in the Middle
East.
This committee’s first
meeting will be held in mid-June in
Washington,
D.C. It is expected to complete
its work within 18 months. Committee meetings will be
open to the public.
A list of the members
of VA’s Gulf War Advisory Committee is attached.
Membership
VA Advisory Committee on Gulf War Veterans
-
Charles Cragin, (Chair) of Raymond, Maine. Currently serves a senior counselor
for Maine Street Solutions, LLC.
-
Martha Douthit of Ashburn, Va. Surviving spouse of Gulf War Army
veteran, member of the Gold Star Wives of America,
currently an international trade analyst with the
U.S. Department of Commerce.
- Dr.
Henry Falk of Atlanta. Retired rear
admiral and former Assistant U.S. Surgeon
General. Currently director for the
Coordinating Center for Environmental Health and Injury
Prevention with the Centers for Disease Control and
Prevention.
-
Mark Garner of Lorton, Va. A retired Marine Corps chief warrant
officer-three and Gulf War veteran who served as a
Nuclear, Biological, and Chemical Defense Officer.
- Dr.
Lynn Goldman of Chevy Chase, Md. Vice chair of the Institute of Medicine Gulf
War and Health Study;
currently professor of environmental health sciences
at Johns Hopkins
University.
- Dr.
John Hart of Plano, Texas. Past president of the Society for
Behavioral and Cognitive Neurology, currently
professor of neurology and psychiatry at
the University of Texas Southwestern Medical
Center.
-
William (Rusty) Jones of South Riding,
Va. Retired
Marine Corps colonel, and veteran of Gulf War and
Vietnam War.
-
Kirt Love of Crawford, Texas. An Army veteran of the Gulf War,
currently serving as director of the Desert Storm
Battle Registry.
-
Daniel Ortiz of Whittier, Calif. An Army veteran of the Gulf War,
currently serving as department service director
with the Veterans of Foreign Wars.
-
Daniel Pinedo of Oceanside, Calif. Marine Corps colonel currently serving
as the comptroller for First Marine Expeditionary
Force at Camp Pendleton, Calif.
- Thomas Plewes of Annandale, Va. A retired Army lieutenant general and
former chief
of the Army Reserve. Currently a senior program
officer with National Academy of Sciences.
- Valerie Randall
of Savage, Md. A retired Army
sergeant first class; currently with the Department
of Homeland Security.
- Edward (Randy)
Reese of Washington, D.C. An Army veteran of the Gulf War;
currently national service director for the Disabled
American Veterans.
- Steve Robertson
of Fredericksburg, Va. A Gulf War veteran who served both in the
Air Force and Army National Guard. Currently
director of the national legislative commission for
The American Legion.
# # #
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In April 2008, the Secretary of U. S.
Department of Veterans Affairs
established the Advisory Committee on
Gulf War Veterans. The purpose of the
Advisory Committee is to provide advice
to the Secretary on the full spectrum of
health care and benefits issues that
confront veterans who served in the Southwest Asia theater of operations during the 1990-1991
period of the Gulf War. To carry out
these duties, the Committee is expected
to assess both the effectiveness of
existing benefits and services and to
determine the need for new initiatives
and/or policies that relate exclusively
to this population of veterans. |
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Our Charter |
http://www.va.gov/gulfwaradvisorycommittee/