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Status Update: October 23rd, 2002 - DSBR meeting VA officials

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  • Desert Storm Battle Registry
    Status Update: October 23rd, 2002 Meeting with Washington DC Veteran Affairs: October 22nd, 2002 1:30PM to 3:40PM Attended: Jeffery E. Phillips - Deputy
    Message 1 of 1 , Oct 23, 2002
      Status Update: October 23rd, 2002
       
      Meeting with Washington DC Veteran Affairs:
      October 22nd, 2002 1:30PM to 3:40PM
       
      Attended:
      Jeffery E. Phillips - Deputy Assistant Secretary for VA Public Affairs
      Mark Brown Ph.D. - Director of the VA's Environmental Agents Service
      Thomas G. Bowman - Acting Assistant Secretary for Public and Intergovernmental Affairs
       
      Kirt Love - Director, DSBR; Board member of DSJF
      Venus Hammack - Administrator, DSBR; Board member of DSJF
       
          FAQ materials for physicians that help them satisfy the
          conditions of title 38 when examining Gulf War vets. That
          even though it is a PGR, C&P exam, etc. That the text be
          provided to new physicians so that they understand what would
          help A Gulf War vet win a VA claim when the illness is undefined
          and the nature of the illness does not have DOD documentation
          for burden of proof in deployment scenarios. ie classified missions
       
          WRIISC ( War Related Illness Clinic's ) – That at this time we have
          witnessed the difficulty of getting a VA referral to the WRIISC clinic
          and the transportation issue form central to western united states to
          the east coast clinics. That Helen Malaskiewicz ( Senior registry
          Coordinator - Environmental Agents Service ) is aware of the problem
          and trying to work it. Is this a 2003 Congressional funding issue
       
          Project SHAD veterans should be allowed to complete a public SHAD
          registry same with the same questions as Persian Gulf Veterans.
          Take the private registry that Mark Brown mentioned, and make it
          more accessible to those that believe they were involved but have
          not received a letter from VA stating they were. That with over 5,500
          names - its possible that more may surface because of classified
          missions not mentioned by DOD as of yet.
       
          That a current problem in adjudication is the bridge between the
          VAMC's patient representative and the VA Regional special Case
          Workers when it comes to Gulf War cases. The fact that each cannot
          walk over to the other side when a unique case is in limbo. That a
          specialized Case Manager is needed to follow a case from start to
          finish to more quickly expedite undiagnosed / hard to define VA cases.
       
          Lobbies of VAMC's - Signs, Literature, and Kiosk. Where does a veteran
          start when they walk in a VAMC for the first time. That uniformity and
          providing information in the lobbies of VAMC's gives veterans choices
          and information to make choices that might quicken resolution of their
          current illness dilemmas. Gulf war veterans are usually not even aware
          of a Persian Gulf coordinator or even how to find one. Also, many VAMC's
          have very different protocols asto research libraries - some are widely available
          and some VAMC's allow virtually no access.
        
          Homeless veteran shelters are not often government subsidized, and often
          cannot qualify for VA matching grants. Can special exceptions be granted to
          fund shelter with outright grants in areas that don't have shelters or donate
          government properties for shelters ( i.e. abandoned LA VAMC ).  

       
          Veterans accessing special VA website page, were the veteran can track
          not only his progress in object orientation but add notes ( like 4138 form )
          to their webpage. To include taking pictures of physical abnormalities to email
          or add to the veterans database files if medical information's surfaces between
          examination and adjudication.
       
          Provide uniformity when it comes to PGR coordinators from VAMC facility to facility –

          Some clinics have psyche substitutions, with C&P clinics covering electronic data

          entry but the coordinators are out of the loop. We need specialized people trained to

          recognize Industrial medicine situations rather than traditional medicine or psyche.

       

          The need to standardize SPECT scans a clinical diagnostic tool for deployment

          health cases as well as Gulf War vets. That with say 1,000 SPECTs scans in a

          central reference database - it would be possible to either examine trends that

          support brain dysfunction or at least rule it out as a diagnostic instrument.

       

          That there is a need to get the Armed Forces Institute of Pathology to catalog

          Gulf War tissue samples for the VA researchers. Since this is the only place

          in the United States that Gulf War tissue samples from difficult VA / DOD cases

          were sent from the Gulf War to present. By having the samples cataloged we

          can hopefully see trends in what samples were sent the most of - like damaged

          brain tissue or specific organ resections representative of a illness trend.

       
      and so much more....
       
      Jeff Phillips was courteous and professional throughout, and demonstrated his
      previous experience as Whitehouse Veteran Liaison as well as curiosity to
      anything that showed promise. He rained on none of our concepts, and despite
      his fatigue of a difficult job was always a gentleman. He works longer hours
      than most, and many times is there past 7:00 PM.
       
      Dr. Mark Brown was also quite diplomatic despite our past differences, and even
      paid me a compliment of having a slick website. He volunteered information
      rather than have us beat it out of him, and even sought Venus and I out in the
      lobby versus waiting for us in the meeting room.
       
      Tom had been working with the Whitehouse on plans for Veterans day, so
      the big house needed him for a while - but he did let us come into his
      office for a 10 minute presentation to him. He mentioned how much Jeff
      had told him, and specified that they can direct us to the appropriate offices
      for answers. He understood the nature of what we proposing, and that
      it would take time to get to the people who could answer those questions.
       
      This was a informal meeting on purpose, and so that both sides could
      find common grounds to resolve issues of interest. It is our hope that
      after meeting with these departments, our next steps are answers
      instead of questions.
       
      The rest will defer to the VA RAC.

      Conversation with James Binns - Chairman of the
      Veteran Affairs Research Advisory Committee :
      October 23rd, 2002 - 4:49PM to 5:45PM 
       
      The conversation started out very pleasant, and stayed so to the
      end. Jim wasn't grinding any axes or even concerned about any
      of the behind the scene politics at play - he wanted to know what
      we had to input.
       
      Though we discussed the AFIP, it was understood that this was
      one of many problems facing what maybe a long term ( under )
      association with limited resources.
       
      When it came to the AFIP, I had let it go figuring that someone
      else in the RAC would pick this ball up and run with it. What came
      back to me was that they were juggling too much, and that they
      need a "Why" from me to show the other board members a
      quick and dirty answer versus expending funds to find it themselves.
      I explained the facts of Florabel Mullick's ( AFIP - Pathology ) 
      conversation, and that since we are not a recognized government
      Research firm that the AFIP would not do this for us. But someone
      would have to pick up the tab for the AFIP building a catalog. In the
      end the catalog might show disease clusters just by the number
      of specific organ samples. Jim told me the RAC wanted to find
      brain tissue samples, and again I specified that the AFIP tissue
      vault was a one of a kind unique vault. This would be it, and no others.
       
      Jim asked me what might be some other areas of medical interest
      possibly missed. I mentioned 2 areas that I felt were very possible
      candidates . One was fatty tissue resections from abdominal cavities
      of veterans, since spectroscopic analysis would show long term
      stored toxins that might provide clues of heavy metals of poisons.
      The other was swabbing the internal intestinal mucousa for either
      parasitic or microbial flora that was not normal ( endemic ). That
      we may have picked up unique clostridial flora or leichmania parasites
      that may evade testing by other standards.
       
      I also mentioned to him about the SPECT scan as a standard for
      vets, and that it was already used heavily with prison population
      and schitizophrenia research. It shows the lowered metabolization
      in the brain from either Seratonin inhibition or vascular damage. 
      That eventually this would be a diagnostic standard if it was used
      more heavily. DOD opposed it, mostly WRAMC - who seems to
      oppose most new diagnostic concepts.
       
      He also talked about Dr. Feusnner and Francis Murphy moving on -
      and that if we could get some fresh clinical blood into the arena
      we might speed up medial research issues. He agreed that there
      was a stagnant crowd of legacy personnel around in the VA channels,
      and it was time for a change. I mentioned that once Dr. Susan Mathers
      also moved on things would improve.
       
      I did not get the impression from Jim of wanting to quickly wrap
      up with me, or wanting to satisfy a quick solution while avoiding
      answering tough questions. Jim really shows serious demeanor
      that this will be a long term job, and that many of the RAC staff
      have 2 or 3 year teniors.
       

      Closing remarks:
       
      If this is a elaborate guise to placate us, then its ten times
      better than anything DOD has done around us.
       
      I haven't seen this kind of effort before, so I cant feel as cynical
      on this one as I have with IOM, CDC, or DOD. Its much more
      intelligent and though out, and something I cant dismiss easily.
       
      The old adage holds true though, action speak louder than
      words - so lets see what happens. I feel better about this than
      most of the stuff I been around the last 5 years, it could be
      the real thing. Imp trying not to be overly cynical, its just this
      doesn't make up for 8 years of personal hardship. DOD has
      really ground us under the boots, and I've seen a awful lot.
       
                                                              Sincerely
                                                              Kirt P. Love
                                                              Director, DSBR
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