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Gulf War Illness Washington Update

Written by Anthony Hardie There’s lot happening right now on behalf of veterans of the 1991 Gulf War, and after years of missteps, most of it is now squarely aimed at improving the health and lives of Gulf War veterans. However, the U.S. Senate has taken action that would deeply fail our ailing Gulf War veterans, and unless action is taken by the Senate soon, Gulf War veterans suffering from Gulf War Illness (about one out of every three, based on current estimates) will lose their best hope for medical treatments to improve their health and lives. The updates below are a brief overview of what’s happening now, and while the Senate action is upsetting and best, the other reports are more encouraging. As always, as a fellow permanently service-disabled Gulf war veteran representing Gulf War veterans in many of these arenas, please leave your comments — I carefully read them all and echo them to anyone who will listen (smiling) in our deliberations in Washington and beyond. The RAC The Congressionally chartered U.S. Department of Veterans Affairs (VA) Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) has announced its next meeting for January 31st and February 1st, 2011 in Washington, DC. The new meeting dates will allow for a coordinated attendance for the RAC-GWVI, the VA Gulf War Steering Committee, and members and VA Office of Research and Development Office regarding the revised VA Gulf War Research Strategic Plan. This meeting is open to the public. And, as the meeting date gets closer, instructions will be provided on how to call in for those who wish to attend via teleconference — at no charge to you, of course. As a RAC member, I’ll be part of this meeting. Please feel free to share your comments and questions with me in advance so I can represent you the best I can at this meeting. The Future of CDMRP The acclaimed Gulf War Illness Research Program funded as part of the Congressionally Directed Medical Research Programs (CDMRP) remains at serious risk of being eliminated as a stand-alone program due to Congressional action by the United State Senate. The CDMRP’s Gulf War Illness program is focused solely on “improving the health and lives” of those affected by Gulf War Illness, which is estimated to affect 250,000 veterans, or more than one-third of all veterans of the 1991 Gulf War. The small but highly efficient and effective CDMRP has found the only viable treatment, CoQ10, which has been proven to help alleviate some GWI symptoms. In mid-September, the U.S. Senate’s appropriations committee voted to support a deal that included elimination of the CDMRP programs for Gulf War Illness, ALS, Multiple Sclerosis (MS), and a number of other important CDMRP programs not duplicated anywhere else in government. Some newer members of Congress are reported to believe that the program is duplicative of other programs, but that is patently false. In fact, for Gulf War Illness research, there are only two current federal “pots of money” where medical research is funded: VA, and CDMRP. To qualify for VA’s medical research funding, only VA staff qualify, so the entire rest of the research world in universities, not-for-profit research institutes, and others cannot qualify. Furthermore, most of VA’s Gulf War Illness research to date has not been multi-disciplinary or multi-instutional — the current trend in medical research. And most importantly, VA’s hundreds of millions of dollars in GWI medical research has yet to produce even a single viable treatment for Gulf War Illness. Unless the Senate takes specific action on the floor to restore the CDMRP Gulf War Illness program — the only program in the history of Gulf War Illness to produce a treatment that helps reduce some GWI symptoms — the Senate’s final bill would include the current provision that eliminates it, along with the ALS and MS programs. Furthermore, a minimum of $25 million in funding is needed this year to pay for the three multi-disciplinary, multi-institution consortia projects that are currently funded for start-up costs only. If $25 million is not provided by Congress for this program, the consortia will die on the vine. To not maintain a standalone DoD medical research program aimed at developing treatments for the chemical-induced Gulf War Illness medical disorder cuts at the heart of military medical readiness, and says to our Gulf War veterans, “You don’t matter anymore.” Calls, emails, and letters are desperately needed now to call for a restoration of funding of these critical programs, and funding of the Gulf War Illness CDMRP program at $25 million. CDMRP Update The CDMRP’s integration panel, of which I’ve been a member since the program began in December 2006, will meet via teleconference in early December. We’ll be reviewing the final research proposals submitted for this year’s research funding Gulf War veteran and Gulf War Illness patient Chris Kornkven, who recently moved with his beautiful family to Colorado, also serves on the panel and provides a wealth of knowledge from his nearly 20 years experience in Gulf War veterans’ advocacy. From earlier this year, many of them looked quite promising and are expected to lead to additional treatments and help in improving Gulf War veterans’ lives and well being. Regrettably, the meetings cannot be open to the public (or medical researchers) because they involve procurement sensitive information. However, as Gulf War Illness patients and active advocates, Chris and I both work very hard to represent the Gulf War veteran community. As always, please contact me about anything related to the CDMRP — including how GWI may be affecting women or veterans with particular racial backgrounds — and I’ll continue to do my best to represent all of our community’s needs. VA Gulf War Task Force The VA has recently released the new report from its internally staffed Gulf War Task Force. The report can be found at http://www.va.gov/opa/publications/docs/Draft_2011_GWVI-TF_Report.pdf. The GWTF was created based on the recommendations of the Gulf War veteran community and the RAC-GWVI. “To ensure we are tracking the needs of our Veterans, we want to get feedback from Gulf War Veterans on this draft report,” said Gingrich. “Their feedback is critical to our efforts to understand and serve their specific needs. Therefore, we hope they take advantage of one of the different opportunities to provide feedback that we have created for them,” said the Chairman of the Gulf War Veterans’ Illnesses Task Force is John R. Gingrich, chief of staff at VA, a retired Army officer who also served in the Gulf War. Public comments on the proposal are a very important part of the VA’s review process, and anyone — veteran, family member, researcher, member of the public — can provide their comments. While Gulf War veteran advocates have been encouraging VA to include Gulf War veteran representation on the committee, VA leadership does strongly encourage public comment through review of the GWTF’s internally created recommendations and reports. Your public comments are due to the Federal Register no later than Nov. 21, 2011. The link to the Federal Register is http://www.regulations.gov/#!documentDetail;D=VA-2011-VACO-0001-0239. In addition, VA recognizes that a great number of Gulf War Veterans use the Internet on a daily basis to share their ideas and concerns, so VA has also created a public discussion board on the seven recommendations at: http://vagulfwartaskforce.uservoice.com/. To view the report without making recommendations, please visit VA’s website at http://www.va.gov/opa/publications/Draft_2011_GWVI-TF_Report.pdf. Because of the requirement that RAC-GWVI recommendations be discussed in a public meeting, there will be no official RAC-GWVI comment, so your individual actions are strongly encouraged. VA Gulf War Steering Committee The VA’s Gulf War Steering Committee will be meeting next in early December. Much of the meeting is expected to include reviewing the work of a number of subcommittees that have been working hard in the background to flesh out the first-ever VA Strategic Plan for Gulf War Illness Research that will be focused like a laser on improving the health and lives of Gulf War veterans. The GWSC is composed of members of the RAC-GWVI, and VA’s National Research Steering Committee (NRSC), which helps oversee and provide direction for all of VA’s vast array of medical research efforts. The GWSC’s deliberations are not currently open to the public. As the sole Gulf War veteran on the panel otherwise composed of highly distinguished scientists, you can be assured that I do my best to represent the Gulf War Illness patient community. Medical Research Oriented Gulf War Illness Patient Needed If you are a Gulf War veteran suffering from chronic multi-symptom illness not otherwise diagnosed as some recognized medical condition like ALS or MS, you have proof you served in theater in the 1991 Gulf War, and you can read and understand medical research, please contact me for an opportunity to serve your fellow veterans. You’ll spend a few days reviewing medical research proposals and providing clear written and verbal comments about each proposal as an integral part of the review process. If you have a medical or scientific background or simply have been around medical research enough to understand it, and you understand firsthand what it’s like being a Gulf War Illness patient, this is an exciting and rewarding opportunity to help your fellow Gulf War veterans. You must have high integrity, and be willing to abide by a confidentiality agreement to protect the procurement information submitted by medical researchers from around the world. You’ll be compensated for your time, and all travel is covered in full. Think you have what it takes? Interested in helping your fellow ill Gulf War veterans? Please contact me at [email protected] This e-mail address is being protected from spambots. You need JavaScript enabled to view it . Conclusion Even if you have already, please again take the time to contact both of your U.S. Senators to demand they provide $25 million in funding for the CDMRP Gulf War Illness research program this year. Again, to not maintain a standalone DoD medical research program aimed at developing treatments for the chemical-induced Gulf War Illness medical disorder cuts at the heart of military medical readiness, and says to our Gulf War veterans, “You don’t matter anymore.” If you need more information on Gulf War Illness, including to provide to your medical care provider, please take a moment to visit the newly created Association for Gulf War Illness, at www.AGILE.gs. Thank you to all my fellow Gulf War veterans, for your service and for your sacrifice in doing the best you can to grapple with an array of life-changing and often debilitating medical symptoms that are the price each of us has paid for serving our nation. Anthony Hardie Madison, Wis.