Status Update: October 23rd, 2002 - DSBR meeting VA officials
- Status Update: October 23rd, 2002Meeting with Washington DC Veteran Affairs:October 22nd, 2002 1:30PM to 3:40PMAttended:Jeffery E. Phillips - Deputy Assistant Secretary for VA Public AffairsMark Brown Ph.D. - Director of the VA's Environmental Agents ServiceThomas G. Bowman - Acting Assistant Secretary for Public and Intergovernmental AffairsKirt Love - Director, DSBR; Board member of DSJFVenus Hammack - Administrator, DSBR; Board member of DSJFFAQ materials for physicians that help them satisfy theconditions of title 38 when examining Gulf War vets. Thateven though it is a PGR, C&P exam, etc. That the text beprovided to new physicians so that they understand what wouldhelp A Gulf War vet win a VA claim when the illness is undefinedand the nature of the illness does not have DOD documentationfor burden of proof in deployment scenarios. ie classified missionsWRIISC ( War Related Illness Clinic's ) That at this time we havewitnessed the difficulty of getting a VA referral to the WRIISC clinicand the transportation issue form central to western united states tothe east coast clinics. That Helen Malaskiewicz ( Senior registryCoordinator - Environmental Agents Service ) is aware of the problemand trying to work it. Is this a 2003 Congressional funding issueProject SHAD veterans should be allowed to complete a public SHADregistry same with the same questions as Persian Gulf Veterans.Take the private registry that Mark Brown mentioned, and make itmore accessible to those that believe they were involved but havenot received a letter from VA stating they were. That with over 5,500names - its possible that more may surface because of classifiedmissions not mentioned by DOD as of yet.That a current problem in adjudication is the bridge between theVAMC's patient representative and the VA Regional special CaseWorkers when it comes to Gulf War cases. The fact that each cannotwalk over to the other side when a unique case is in limbo. That aspecialized Case Manager is needed to follow a case from start tofinish to more quickly expedite undiagnosed / hard to define VA cases.Lobbies of VAMC's - Signs, Literature, and Kiosk. Where does a veteranstart when they walk in a VAMC for the first time. That uniformity andproviding information in the lobbies of VAMC's gives veterans choicesand information to make choices that might quicken resolution of theircurrent illness dilemmas. Gulf war veterans are usually not even awareof a Persian Gulf coordinator or even how to find one. Also, many VAMC'shave very different protocols asto research libraries - some are widely availableand some VAMC's allow virtually no access.Homeless veteran shelters are not often government subsidized, and oftencannot qualify for VA matching grants. Can special exceptions be granted tofund shelter with outright grants in areas that don't have shelters or donategovernment properties for shelters ( i.e. abandoned LA VAMC ).Veterans accessing special VA website page, were the veteran can tracknot only his progress in object orientation but add notes ( like 4138 form )to their webpage. To include taking pictures of physical abnormalities to emailor add to the veterans database files if medical information's surfaces betweenexamination 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 hisprevious experience as Whitehouse Veteran Liaison as well as curiosity toanything that showed promise. He rained on none of our concepts, and despitehis fatigue of a difficult job was always a gentleman. He works longer hoursthan most, and many times is there past 7:00 PM.Dr. Mark Brown was also quite diplomatic despite our past differences, and evenpaid me a compliment of having a slick website. He volunteered informationrather than have us beat it out of him, and even sought Venus and I out in thelobby versus waiting for us in the meeting room.Tom had been working with the Whitehouse on plans for Veterans day, sothe big house needed him for a while - but he did let us come into hisoffice for a 10 minute presentation to him. He mentioned how much Jeffhad told him, and specified that they can direct us to the appropriate officesfor answers. He understood the nature of what we proposing, and thatit 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 couldfind common grounds to resolve issues of interest. It is our hope thatafter meeting with these departments, our next steps are answersinstead of questions.The rest will defer to the VA RAC.Conversation with James Binns - Chairman of theVeteran Affairs Research Advisory Committee :October 23rd, 2002 - 4:49PM to 5:45PMThe conversation started out very pleasant, and stayed so to theend. Jim wasn't grinding any axes or even concerned about anyof the behind the scene politics at play - he wanted to know whatwe had to input.Though we discussed the AFIP, it was understood that this wasone 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 someoneelse in the RAC would pick this ball up and run with it. What cameback to me was that they were juggling too much, and that theyneed a "Why" from me to show the other board members aquick 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 governmentResearch firm that the AFIP would not do this for us. But someonewould have to pick up the tab for the AFIP building a catalog. In theend the catalog might show disease clusters just by the numberof specific organ samples. Jim told me the RAC wanted to findbrain tissue samples, and again I specified that the AFIP tissuevault 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 interestpossibly missed. I mentioned 2 areas that I felt were very possiblecandidates . One was fatty tissue resections from abdominal cavitiesof veterans, since spectroscopic analysis would show long termstored toxins that might provide clues of heavy metals of poisons.The other was swabbing the internal intestinal mucousa for eitherparasitic or microbial flora that was not normal ( endemic ). Thatwe may have picked up unique clostridial flora or leichmania parasitesthat may evade testing by other standards.I also mentioned to him about the SPECT scan as a standard forvets, and that it was already used heavily with prison populationand schitizophrenia research. It shows the lowered metabolizationin the brain from either Seratonin inhibition or vascular damage.That eventually this would be a diagnostic standard if it was usedmore heavily. DOD opposed it, mostly WRAMC - who seems tooppose 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 arenawe might speed up medial research issues. He agreed that therewas a stagnant crowd of legacy personnel around in the VA channels,and it was time for a change. I mentioned that once Dr. Susan Mathersalso moved on things would improve.I did not get the impression from Jim of wanting to quickly wrapup with me, or wanting to satisfy a quick solution while avoidinganswering tough questions. Jim really shows serious demeanorthat this will be a long term job, and that many of the RAC staffhave 2 or 3 year teniors.Closing remarks:If this is a elaborate guise to placate us, then its ten timesbetter than anything DOD has done around us.I haven't seen this kind of effort before, so I cant feel as cynicalon this one as I have with IOM, CDC, or DOD. Its much moreintelligent and though out, and something I cant dismiss easily.The old adage holds true though, action speak louder thanwords - so lets see what happens. I feel better about this thanmost of the stuff I been around the last 5 years, it could bethe real thing. Imp trying not to be overly cynical, its just thisdoesn't make up for 8 years of personal hardship. DOD hasreally ground us under the boots, and I've seen a awful lot.SincerelyKirt P. LoveDirector, DSBR