Tuesday, March 8, 2016

**URGENT ACTION ALERT** - 5 Minutes to Help the Gulf War Illness treatment research program




ACTION NEEDED:   Ask both your U.S. Senators and your Congressperson in the U.S. House of Representatives to sign onto the "Baldwin" (in the U.S. SENATE) or "Roe-Walz" (in the U.S. HOUSE) "Dear Colleague Letter for FY17 Gulf War Illness CDMRP funding"  

DEADLINE:  Sign-On's must be completed no later than March 14, 2016 (House) and March 15 (Senate).

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(91outcomes.com) - Several members of Congress have launched an important, bipartisan initiative to provide continuation funding for the treatment-focused Gulf War Illness Research Program, part of the Congressionally Directed Medical Research Program (CDMRP) administered by the U.S. Department of Defense under Congressional direction.  

Official estimates show that Gulf War Illness affects between one-fourth and one-third of the veterans of the 1991 Gulf War.   The consensus among Gulf War Illness medical researchers is increasingly clear:  With the a concerted national effort, effective treatments can likely be found.

Led in the U.S. House of Representatives by Congressman Phil Roe, M.D. (R-Tennessee) Congressman Tim Walz (D-Minnesota) and in the U.S. Senate by Senator Tammy Baldwin (D-Wisconsin), the effort seeks continuation funding for the unique, treatment-focused medical research program aimed at improving these veterans' health and lives.  

Information below shows what you can do in just five minutes to support this critically important national effort to help our nation's war veterans on this 25th anniversary of the war.


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STEP-BY STEP, HOW YOU CAN HELP IN JUST 5 MINUTES:

1.  Find your two U.S. Senators and one Congressperson in the U.S. House of Representatives:
    • (U.S. SENATE) Find your two U.S. Senators here (near the top right corner, select your State).  
    • (U.S. HOUSE) Find your Congressman/Congresswoman here (near the top right corner, enter your zip code).  

2.  Call their Washington, DC office [not their office(s) back in their district or home state] , and ask for the legislative staff person who handles Defense Appropriations.  
    • If you get their voicemail, leave a detailed voicemail with your specific request (below).


3.  State your name and that you are a constituent, and very briefly (in 1 or 2 sentences at most) state your connection to Gulf War Illness
    • [For example:  "I'm among the one-in-three veterans of the 1991 Gulf War suffering from Gulf War Illness".  
    • Or, "I'm the wife/husband/son/daughter/parent of a Gulf War veteran suffering from Gulf War Illness."
    • Or, "I'm one of many other veterans besides those who served in the Gulf War and I'm also suffering from a chronic multi-system illness like Gulf War Illness."
    • Etc.


4.  State that there is a "Dear Colleague" letter that you are specifically requesting the Congressman/Congresswoman sign onto.  


5.  Provide the name of the "Dear Colleague" letter (there is no bill number -- this is a request to get funding into a bill -- specifically the FY17 Defense Appropriations Act): 
  • (U.S. SENATE)  The "Baldwin Dear Colleague letter for treatment-focused FY17 Gulf War Illness Research Program continuation funding."   
  • (U.S. HOUSE)  The "Roe-Walz Dear Colleague Letter for treatment-focused FY17 Gulf War Illness Research Program continuation funding."  



6.  State that this is continuation funding for a successful, treatment-focused program and there have been many cosigners every year.



7.  State the sign-on deadline (this is a hard deadline)March 14, 2016 (U.S. House) or March 15, 2016 (U.S. Senate).  The Senator or Congressman/Congresswoman will likely want to support the one-fourth to one-third of Gulf War veterans and others suffering from Gulf War Illness.  

Staff contacts, in case they ask are:  Sen. Tammy Baldwin (Jeremy Steslicki); Rep. Phil Roe (Alex Large); Rep. Tim Walz (Chris Bennett).


8.  Ask if you can email the staffer with a short one-pager about the program.  This is very important.  Then right away, email them the link to this document:  

https://www.scribd.com/doc/303204670/About-the-Gulf-War-Illness-CDMRP-Feb-2016


9.  Ask that the staff person follow-up with you to let you know the Senator's or Congressman's/Congresswoman's decision.


10.  Thank the staff person for their time.


AFTER YOUR CALL:

If they say they will sign on, post a comment below this post with the name of the Senator or Congressperson and the name of the staffer and that they will or will not sign on.  

Follow-up in 2-3 days to find out the status, if you haven't heard back.


TIPS:
  • Be polite
  • Be pleasant
  • Be urgent
  • Be respectful
  • Be convincing
  • Be brief
  • Be SPECIFIC with the REQUEST:  Sign onto the "Baldwin" (U.S. SENATE) or "Roe-Walz" (U.S. HOUSE) "Dear Colleague Letter for FY17 Gulf War Illness CDMRP funding"  
  • Do not argue with, get angry with, or threaten the staffer in any way.  


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FREQUENTLY ASKED QUESTIONS (FAQ's)




WHAT IS THE GOAL?




The overall goal of the program is to find effective treatments for the officially estimated quarter-of-a million veterans of the 1991 Gulf War and others who are still suffering from the debilitating effects of Gulf War Illness.



These veterans were directly impacted by a veritable toxic soup of hazardous exposures during the short but intense war, and the best efforts our nation can provide to assist them.  




WHAT CAN I DO TO HELP? 


You can email, call, or electronically message your two U.S. Senators who represent you and your state in the U.S. Senate and your Congressman or Congresswoman who represents you in the U.S. House of Representatives.  



See above for "10 quick and easy steps" to make your request.  



Many Members of Congress have an option to submit your comments from a quick form right on their webpage.



WHO IS LEADING THIS FUNDING EFFORT IN CONGRESS?

In the United States Senate, U.S. Senator Tammy Baldwin (D-Wisconsin) is leading the bipartisan effort for the Senate.  

In the U.S. House of Representatives, Rep. Phil Roe, M.D. (R-Tennessee) and Rep. Tim Walz (D-Minnesota) are co-leading the bipartisan effort for the House.




AT WHAT LEVEL SHOULD THE FUNDING BE SUPPORTED, AND WHY?



The effort is to support the treatment-focused Gulf War Illness CDMRP.  Their effort is calling for House Members to support this important program by signing onto a "Dear Colleague" letter requesting adequate continuation funding for this successful, unique, and important program.  




WHO SUPPORTS THIS PROGRAM?


The program is supported by the nation's leading Veterans Service Organizations, including:  the American LegionAMVETS; Association of the U.S. Navy (AUSN); Burnpits360; Disabled American Veterans (DAV); Lung Cancer Alliance; National Gulf War Resource Center (NGWRC); National Vietnam & Gulf War Veterans Coalition (NVGWVC); Paralyzed Veterans of America (PVA); Sergeant Sullivan CircleToxic Wounds Task Force; Veterans for Common Sense (VCS); Veterans of Foreign Wars (VFW); Vietnam Veterans of America (VVA). 
The FY15 Independent Budget Veterans Service Organizations (IBVSO’s, composed of AMVETS, DAV, PVA, VFW, and 53 other organizations that serve veterans) stated that the GWI CDMRP, “has made great strides in the short time it has been operating.” (pp. 126-27)




WHEN SHOULD I CALL MY SENATORS'/CONGRESSPERSON'S OFFICE?




Right away.  The deadline is fast approaching. 





WHEN IS THE DEADLINE? 


The sign-on deadline for Congresspersons in the U.S. House of Representatives to sign-on is March 14, 2016, and for Senators in the U.S. Senate it is March 15, 2016.  Typically, their offices need one or more days to secure approval to sign-on.  




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ADDITIONAL QUESTIONS



WHERE CAN I LEARN MORE ABOUT THE GULF WAR ILLNESS RESEARCH PROGRAM?



The Congressionally Directed Medical Research Program (CDMRP), a Congressionally directed activity funded under the U.S. Department of Defense, has a comprehensive website on the GWI program at:  http://cdmrp.army.mil/gwirp .  The CDMRP also publishes an overview of the program in its GWIRP program booklet.  


Veterans for Common Sense (VCS), a leading national veterans' education and advocacy organization, has published the following two documents about the Gulf War Illness Research Program:


WHEN IS THE NEXT FUNDING AVAILABILITY FOR GULF WAR ILLNESS TREATMENT RESEARCH FUNDS?


The Congressionally Directed Medical Research Program, which is administered by the U.S. Department of Defense (U.S. Army Medical Research and Materiel Command) provides information for prospective researchers, including how to apply.

Funding announcements are typically made in the late Spring of each year, but timing may vary quite a bit from year to year, depending upon Congressional appropriations.  


WHAT IS RECENT RESEARCH SAYING ABOUT GULF WAR ILLNESS?

Recent research shows that chemical exposures are causally associated with Gulf War Illness.  Psychiatric causes have been ruled out.  


This paper reviews the recent medical literature on the health of 1991 Gulf War veterans, focusing particularly on the central nervous system and on effects of Gulf War toxicant exposures:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4724528/pdf/nihms746360.pdf





WHAT DOES THE "DEAR COLLEAGUE" LETTER ACTUALLY SAY?  


****THIS IS THE "DEAR COLLEAGUE" LETTER THE SENATORS ARE SIGNING ONTO.  THE HOUSE LETTER IS VERY SIMILAR****

March 16, 2016
The Honorable Thad Cochran, Chairman
The Honorable Richard J. Durbin, Ranking Member
Subcommittee on Defense
Committee on Appropriations
Washington, DC 20510 

Dear Chairman Cochran and Ranking Member Durbin:
Thank you for your continued support for the Gulf War Illness Research Program (GWIRP) within the Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP), including the $20 million provided to the program by Congress for Fiscal Year (FY) 2016. As your Committee begins work on the FY 2017 DOD Appropriations Bill, we are writing to provide a program update and to request that you include the funding necessary to continue the GWIRP’s successful work on behalf of Gulf War veterans.
We have made strides in the fight against Gulf War Illness, but many challenges remain. Since the 2008 report of the congressionally-mandated Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC) and the 2010 report of the Institute of Medicine (IOM), science has shown that Gulf War Illness is a physical condition—likely caused by toxic exposures—affecting between one-quarter and one-third of the nearly 700,000 veterans who served. The most recent RAC update in 2014 affirmed these conclusions, and a 2016 IOM update “found little evidence to warrant changes to the conclusions made by the [2010 IOM] committee . . .” Common symptoms include “some combination of widespread pain, headache, persistent problems with memory and thinking, fatigue, breathing problems, stomach and intestinal symptoms, and skin abnormalities.” Studies also have found an elevated incidence of Lou Gehrig’s disease (ALS) among Gulf War veterans as well as significantly elevated rates of death due to brain cancer among those who were most exposed to the release of nerve gas by the destruction of the Khamisiyah Iraqi arms depot.
The positive news is that treatment research has increased significantly since 2008, particularly reflecting the work of the GWIRP at CDMRP, and that early results represent encouraging steps toward achieving the 2010 IOM treatment goals “to speed the development of effective treatments, cures, and, it is hoped, preventions.” Indeed, the GWIRP has served as a model of how to conduct treatment-oriented research to address a challenging illness and is succeeding where earlier programs failed. By Congressional design, the program is narrowly focused on identifying treatments and diagnostic markers. Its highly competitive, peer-reviewed process is open to all researchers, whereas U.S. Department of Veterans Affairs (VA) research is restricted to VA staff, few of whom have expertise in this rapidly-evolving, cutting-edge area.
GWIRP-funded studies have found treatments—like CoQ10, acupuncture, carnosine, and xylitol/saline nasal irrigation—that help alleviate some GWI symptoms, and ongoing evaluations of treatments include off-the-shelf medications and alternative therapies for which there is a rationale for GWI symptom relief. Other studies by multisite, multidisciplinary teams are focused on identifying treatments to attack the underlying disease and are showing great promise, finding that even low-dose chemical warfare agent and/or pesticide exposure leads to the following findings, among others: persistent brain changes associated with GWI; evidence of a GWI chronic central nervous system inflammatory state; a potential explanation of GWI immunological dysfunction; inflammation and immune dysfunction in GWI after exercise challenge; evidence suggesting small fiber peripheral neuropathy in a subset of GWI veterans; lipid dysfunction following GWI exposures; and persistent changes in axonal transport in the brain. Some of the new pilot studies of treatments approved in 2015 include: vagus nerve stimulation; D-Cycloserine; anatabine; liposomal glutathione and curcumin; and a “mitochondrial cocktail” extending the benefits of CoQ10. New research to identify underlying disease mechanisms and biomarkers includes: studies of novel autoantibody serum and cerebrospinal fluid biomarkers; microtubule abnormalities; neurovascular and autonomic dysfunction; brain autoimmune dysfunction; muscle mitochondrial assessment; and an objective blood test from stimulated gene expression. In addition to improving the health of Gulf War veterans, these important discoveries also will help protect current and future American servicemembers who could be at risk of toxic exposures.
Recognizing the program’s progress, the most recent RAC report recommends that “Congress should maintain its funding to support the effective treatment-oriented [GWIRP].” We agree and respectfully request that you provide the necessary resources to continue this vital and effective program in the FY17 DOD Appropriations Bill. Furthermore, it is critical to the program’s success and accountability that it remains a stand-alone program within CDMRP, rather than combined with other diseases.
Thank you for your consideration of our request, which is supported by the American Legion, Veterans of Foreign Wars, Disabled American Veterans, Paralyzed Veterans of American, AMVETS, Vietnam Veterans of America, National Vietnam and Gulf War Veterans Coalition, the National Gulf War Resource Center, and Veterans for Common Sense.
Sincerely,
________________________
Tammy Baldwin
United States Senator
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--Anthony Hardie, 91outcomes.com Author and Gulf War veteran advocate.



1 comment:

Marcus Allred said...


I suffer from GWI and have been fighting for years to get recognition and effective treatment for this illness. Most of the VA providers have never even heard of GWI at least in Winston Salem and Salisbury NC which makes Tom McDonald seem like a liar when he tells us that he is making sure all providers know about this syndrome and know how treat it. At the end of 2014 my conditions drastically became debilitating and I had to go out of work. My company will not honor the disability insurance I paid for and the VA keeps denying my claims for disability rating and social security keeps denying as well. So I am sicker than I have ever been in my life, teetering on the edge of being homeless again while I have to not only fight for benefits but I also have to fight to get treatment in the hopes of at least being able to regain some quality of life. I have contacted countless Veteran Organizations and not one of them is willing to help. They only help post 911 veterans they say. It is sad to say but veterans who lost a limb are the lucky ones. They get treated, they get benefits, they get charity and houses and parades and medals and very deservedly so. We live in chronic severe pain all over our body. We live with severe fatigue. We deal with skin and rashes that itch all over. We deal with constant gastrointestinal issues. We deal with migraines and headaches. We spend our lives laying down often times writhing in pain. There are many other symptoms and issues we deal with as well please google it. 250000 of us in the US deal with this every day. I think the fact that no one has gone postal on the VA and IOM is sufficient proof that this is not some kind of mental defect. But the time has come for all 250000 of us and our friends and family and researchers to stand together and call the President and Congress, and lodge complaints on IRIS and with the VA and any other outlet you can think of. I am doing this as I can in my condition but I am one person. Together we can make a huge difference to wake America up to see how we are being treated. Demand of your VA provider that you get treated for GWI with the most recent research available every time you go to the VA. If we band together and all of us keep informed and keep demanding benefits and treatment and diagnosis then it will not be just one crazy vet but 250000 hero’s.