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IOM - April 20th, Wednesday 2005, meeting commentary

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  • Kirt Love
    IOM - April 20th, Wednesday 2005, meeting commentary At 9:15am we made it in to the IOM, and parked down stairs. The committee was in the closed part of its
    Message 1 of 1 , Apr 20, 2005
      IOM - April 20th, Wednesday 2005, meeting commentary
       
      At 9:15am we made it in to the IOM, and parked down stairs.
      The committee was in the closed part of its morning session.
      But, Craig Hyams - Dr Clauw - Dr. Mark Brown - Howard Kipen -
      Dr. Han Kang and others showed up at 9:35am. They stood
      outside with us. So I got to work my way through them, and
      get my ten cents in out in the hallway away from the committee.
       
      All three morning presentations were Somatic Illness, starting
      with the bogus Craig Hyams pushing this hard. When confronted
      later on by Steve Robinson, Craig said "Steve, we never used the
      words Somatoform. Where do you get this". So I had Venus go
      over and check the Powerpoint with Depali later, sure enough there
      was the word Somatic. I remember him saying many times.
       
      I will correct one thing Steve left out, I sent out the message Friday
      morning about the IOM and the February 17th meeting as well
      as today. If I hadnt found this when I did, no one would have
      been there today but the committee. See, the NSO's didnt
      come at all - nor did any of there staff. James Binns and Lea
      Steel showed up in the afternoon, and he even said they just
      heard about this meeting friday. So the NGWRC needs to stop
      the "Kirt had no part of anything" crap, I caught this like many
      things.
       
      When Steve commented to the committee about them being
      able to expand there charter, I spoke saying the committee at
      the beginning has the ability to vote on the method of review
      they use. That they are not bound by Congress or VA to do
      things the way they have, the committees voted to do so. The
      room fell very quiet.
       
      You can get Steve's presentation from Venus, shes a board
      member and can do that. Im commenting on the work I
      did. Dont get me wrong, Steve was social with me - just to
      much water under the bridge with him.
       
      The afternoon presentations were more Gulf War vet oriented,
      and so the morning bias wasnt weighing so heavy at that
      point.
       
      The Birth Defects Registry information didnt have the DOD
      Birth Defects Registry data in it, but they wanted data that
      went further back than it did. I let them know about the
      2003 canceled Reproductive Outcome report.
       
      Asto the WRIISC, Dr. Kang and Dr. Brown both agreed there
      should be a centrally located WRIISC clinic in the middle
      of the country. On other short comings, I spelled out to them
      what you have read these last two months.
       
      At 3:30pm I finally got to speak, and this is what I said as
      best as I can recall:
       
      Ladies and gentleman, thank you for giving me a chance to
      to speak to the committee.
       
      I wish to address a chronological history of events that come
      from the veterans perspective.
       
      Ive noticed that some of the very people I wish to scrutinze
      have already left. ( I point to Craig Hyams, Mark Brown,
      Kelly Brix, and other chairs ).
       
      In 1999 I met with Dr. Bernard Rostker for the last time at the
      Pentagon NSO meeting. The topic had been the replacement
      of the CCEP program with the leaving of Col James Riddle -
      and the replacement with the Clinical Practice Guidelines.
      Rostker had told the room, "Kirt, you will be a part of CCEP".
      Dr. Charles Engle took over CPG, and had stated veterans
      would have input in this. Well, March 2001 rolled in, and DHSD
      made sure that Venus, and I missed the NSO meeting by telling
      us the wrong time on purpose - the meeting where Dr. Engle
      would present the finished CPG. After that, Gulf War veterans
      would never again be allowed into a NSO meeting at the Pentagon.
       
      The last public Gulf War Illness Conference took place in
      February 2001, and Kelly Brix - Charles Engle - James
      Riddle among others made things hard for the veterans
      attending. They posted "No Camera" signs after confronting
      Venus and I about our camera. The atmosphere was hostile.
       
      In October 2000 PSOB made its final presentation, in this
      they suggested OSAGWI become Deployment Health - and
      take a generic approach to military illness studies.
       
      So in 2001 Persian Gulf Exams became Gulf War exams, and
      with that change came many changes. Most bad. The public
      PG coordinators list were removed, VHA handbooks diappeared,
      the 10-9909a (RS) forms were removed from public access, and
      the Gulf War Referral clinics were shut down afterwards. Much of
      this was not replaced until last week.
       
      Later that year the MHVCB was shut down, they were overseeing
      OSAGWI and working on the fruitless mutual database for Gulf
      War infomration. A $365,000,000 program that even stated in its
      own records it was slated to fail. They were obsorbed by DHSD.
       
      Two years after it was supposed to start, the WRIISC program
      has seen 38 soldiers nation wide in three years. Thats all era
      veterans nation wide, past to resent. Its only open on Thursday
      mornings with one doctor. Ive tried myself to be seen since the
      clinic opened, and Im in touch with EA over this. The WRIISC
      VHA handbook just was made available this week.
       
      Persian Gulf Coordinators were phased out in 2001, and replaced
      with Environmental Agents Cordinators. But, when they made this
      change they didnt put up signs or literature with the new people.
      Every VAMC did the Gulf War Registry program differently, and
      it varied widely. Some used old staff to double ( administration )
      as Coordinators while others used C&P staff to do this, and yet
      others had there Primary Care teams members fill in. When it
      came time for exams, some doctors refused to do the exams.
      There was no literature in lobbies, no signs, displays, or any
      mention of this program or the fact it had changed.
       
      CCEP has been ignored though its Phase II exams should
      be considered.  Its a military parallel of the Persian Gulf
      Registry, now the Gulf War Registry that covers OIF and
      OEF. It had more advanced labs, and procedures.
       
      In Sept 2002 we met with DHSD to discuss the coming war
      in Iraq. They told us in 2002 the were not concerned about the
      Leishmaniasis issue, and were not going to track medical
      records in the region, that classified missions that effected
      a vets health would be dealt with on a one on one basis. Well,
      Princicpi changed that in 2003 when he enforced PL 105-85
      and made them track soldiers. Except, about 38% had deployed
      with no redeployment anything by then - so the information is
      incomplete.
       
      In Iraq Cutaneous Leishmaniasis effected 1500 troops and
      Kala Azar outbreak was being followed by the WHO there.
      In Kabul Afghanistan 200,000 people had contracted this disease.
      The problem is civilian personnel are returning home, giving blood
      that might be contaminated - and not being screened for this.
      The visceral Leishmaniasis test is still only 33% accurate
      on its detection, and so Im afraid there might be cases getting
      by detection.
       
      5 years later the Armed Forces Institute of Pathology still wont
      produce a catalog of its Gulf War tissue samples. They have
      them for every disease and cancer you can imagine, but still
      decline to catalog the samples. Ive brought this upto ever
      committee to include the RAC, and its still being ignored.
      Thousands of tissue samples and 50 million blood samples
      that are cryogenically stored. Chronilogically, as well as the
      HIV blood samples. Only Naval Military Medicine has accessed
      the samples for its Hep-C study. Civilian Researchers have
      yeat to access this material.
       
      In 1997 the GAO report ( GAO-04-767, GAO-04-821T ) had
      stated what a sad state Gulf War medical access was.
      The Registry programs, and medical research were in
      dissarray. If you could get a committee to do a GAO report
      of the same programs today, you would probably find them
      in a worse state than then. At the Dallas VAMC, even without
      signs / literature / displays and a coordinator that worked
      up in administration rather than down on the floor - they got
      45 Gulf War exams a month as referrals from C&P exams.
      How many would that really be if the programs were public
      and easy to find, use.
       
      DHSD has let there own data fall apart, and I pushed them
      to put back up the PAC and PSOB websites. As well as the
      CCEP information. For the last month I have tried to meet
      with Mike Kilpatrick about the Registry problems at VA, he
      wont meet with me. Half the medical page doesnt even work
      at there website.
       
      The WRIISC program is failing because the VAMC Directors
      do not want to pay the transportation cost to send someone
      to the East Coast. Dr. Kang and Dr. Brown have agreed with
      me there should be a central center. My suggestion was the
      Houston VAMC which still has its original Persian Gulf Coordinator
      Ron Ratliff, retool its outpatients clinic rather than rebuild a
      whole new center. It probably wouldnt take much, and they
      are already familiar with the program. It could bring in traffic
      from the East coast, as Texas and California have the highest
      numbers of Gulf War vets.
       
      Im trying to say is that since 2001 there are no public programs
      anymore, that DOD doesnt want any kind of rallies like what
      happened back in San Fransico. It wants its legacy personnel
      left in place to make things stall, and continue to produce flawed
      study data like Somatoform. For those that dont know, Dr. Charles
      Engle who heads the Deployment Health Clinical Centers first
      study was Somatoform among Gulf Veterans. He like others do
      not hold up under public scrutiny, so they have created a system
      with VA and DOD were Gulf War vets are not seen. If we are seen,
      we arent complaining, anything goes.
       
      Thank you for your time.
       
      When Venus spoke, I did interject about CHPPM sand samples being
      a example of industrial waste in Iraq. That the committee needed to
      address animal studies like the Oil Well Feral Cat study, and went on
      some more about the committee.
       
      Jim Binns then spoke breifly to the committee asking they use a
      wide pallette in their research. Not to limit themselves, and have
      more public sessions.
       
      Last but not least, I confronted Caroline Fulco about a few points.
       
      1. In the acknowledgement of past IOM reports, only names
          ( like mine ) are mentioned. It gives the impression that I
          agreed with that committee when I strongly disputed it.
      2. The website and reports do not reflect interactions with
          veterans, just conclussions. Its too static.
      3. Were did all the information go that most of us presented
          to the IOM over the years.
       
      Well, I got a answer to the little known "Public Access Records Office".
      No one has seen this until now, but if I understand right you have to
      get permission to enter, then you can get what you want. I asked Lea
      Steel if she had heard of this, she said no - so I know many others havent.
      A bunch of my stuff, to include PowerPoints are in here.
      ((((  Link below )))
       
      Another meeting is coming up in May 26th, its Endemic disease or
      something like that. I made sure they told Jim Binns this before he
      headed out the door.
       
      Theres more, but I have to go lay down - Im hurting real bad from all
      of this.
       
                                                                  Sincerely
                                                                  Kirt P. Love
                                                                  Director, DSBR
       
       
      Public Access Records Office

      How to Get Information

      The institution's Web site <http://national-academies.org> contains an abundance of information. In particular, the Current Projects System (CPS) is a searchable area of the Web site that provides information about committee activities that are subject to the requirements of Section 15 of the Federal Advisory Committee Act Amendments of 1997 (FACA). Information in CPS includes descriptions of project scope, names and affiliations of committee members and statements of their qualifications, notice of data-gathering meetings of committees, summaries of closed committee meetings or sessions, and titles of committee reports at the time that they are publicly released.

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      The Public Access Records Office has been established to provide access to the project materials available to the public. Copies of written materials are available for $.25 per page plus mailing costs. Requests for materials from the public access files, or for additional information on specific activities, should be directed to:

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      Contact the Public Access Records Office to make an inquiry or to schedule an appointment to view project materials available to the public. Normal business hours for the Public Access Records Office are 9:00 am to 5:00 p.m., Monday through Friday.
       



       
       

      ----- Original Message -----
      From: Kirt Love
      Sent: Friday, April 15, 2005 10:53 AM
      Subject: Review of the Medical Literature Relative to Gulf War Veterans' Health

      Project Title: Review of the Medical Literature Relative to Gulf War Veterans' Health
      Project Identification Number: HPDP-H-04-04-A


      Gulf War and Health: Literature Review
      April 20, 2005 - April 21, 2005
      500 5th Street

      500 5th Street, N.W.
      Washington, DC


      If you would like to attend the sessions of this meeting that are open to the public or need more information please contact:
      Contact Name: Damika Webb
      Email: dwebb@...
      Phone: 202 334 2782
      Fax: 202 334 2939


      Agenda:
      Committee on Gulf War and Health
      April 20th, 2005
      Keck 109
      OPEN SESSION

      DRAFT AGENDA

      Wednesday, April 20, Keck 109

      10:15 - 10:30 AM Opening Remarks
      George Rutherford, Chair

      10:30 - 11:00 War Syndromes and Their Evaluation: From the U.S. Civil War to the Present
      Kenneth Craig Hyams, MD, MPH
      Chief Consultant, Occupational and Environmental Health Strategic Healthcare Group Department of Veterans Affairs

      11:00 - 11:30 Defining Gulf War Illness: Factors, Clusters, and Diagnoses
      Howard Kipen, MD, MPH
      Director, Clinical Research and Occupational Medicine Division
      Environmental & Occupational Health Sciences Institute
      UMDNJ-Robert Wood Johnson Medical School and Rutgers University

      11:30 - 12 Noon The Iowa Gulf War Study: Recent Findings
      Bradley N. Doebbeling, MD, MSc
      Director, VA HSR&D Center on Implementing Evidence-based Practice
      Roudebush VAMC

      12 Noon - 12:30 PM Public Comment Period

      12:30 PM - 1:30 PM Lunch

      1:30 - 2:00 The Cause of Multi-symptom Illnesses Following the First Gulf War
      Daniel J. Clauw, MD
      Director, Chronic Pain and Fatigue Research Center
      The University of Michigan

      2:00 - 2:30 National Health Survey of Gulf War Era Veterans, Phase III
      Seth Eisen, MD, MSc
      Staff Physician, St. Louis VA Medical Center

      2:30 - 3:00 Birth Defects among Children of Gulf War Veterans, and Reproductive Outcomes among Women Gulf War Veterans
      Maria Rosario Araneta, PhD
      Assistant Professor, Department of Family and Preventive Medicine Department of Pediatrics
      University of California, San Diego

      3:00 - 3:30 Public Comment Period

      3:30 Adjourn
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