To:   Commissioner John Grady and all concerned Commissioners

veterans@vetscommission.intranets.com

 Attn:  Commissioner Grady

Congressional Members, Congressional Staff, and VA staff:

chris.mcnamee@mail.house.gov,

William.McLemore@mail.va.gov,

jphillips@mail.house.gov,

Jeff_Schrade@vetaff.senate.gov,

len.sistek@mail.house.gov,

capdabbo@vba.va.gov,

senator@boxer.senate.gov,

shirley.bailey@va.gov

pddm@nas.edu

 

 

Hi to all,

 

After the posting on the Disability Commission and Dr. Brown’s statements, I have had some questions as to what in the world the VA is trying to do on the diabetes since Mr. Brown indicated the connection to AO was very tentative.  Are they trying to undue what is already done and would they have the ability or power to go back and reevaluate a closed and decided claim on diabetes and/or very possibly PTSD.

 

Let me say to all, I have no idea whether they can do that or not as a fact.  My opinion is they can do whatever they want to do or whatever the White House/DoD directs them to do for budget control.

 

I do feel like and this is just a gut feeling if they do anything at all, it will only be on IU claims with PTSD involved.  I doubt if they can go back and then reopen claims on diabetes but that is just a guess.

 

A guess based on the least amount of effort for the most amount of savings by scale.  Remember any move off of IU represents the largest dollar amount.

 

The above statements was one reason I said I was going to address the diabetes issue with the Senate VAC as the communications director repeated the same thing to one of our group recently as to “how lucky he was” that there was even a connection to diabetes/AO and repeated what VA’s Dr. Brown recanted.

 

Just as side note, I indicated to you that were on the communications list then about a year ago I had heard distant rumblings that diabetes “as a presumptive” was costing the government a ton of money and they were looking at that real hard to do away with the presumptive assumptions such as diabetes and make each case independently decided.  Now that is what I heard, out of context I am sure or at least I hope it was.

 

The reasons were not the diabetes per se but the other diseases that some doctors were concluding were secondary to the diabetes and then the unemployment issues as well as the mortality follow on widows support from secondary associated causes of death.

 

The recent Gulf War decision by IOM that found "no presumptive Syndrome" or as VA likes to call it Gulf War Illness seems to also fit this scenario of no presumptions for anything for serving in a combat theater.  A combat theater either with known toxic chemicals at an alarming usage rate with increased toxicity over the normal population forms of toxic chemicals or the Gulf War environment where there were the oil fires, the enemies stored toxic/toxin chemicals, or our own usage of depleted uranium shells by the 100's of thousands and in concentrated areas.  

 

The only real serving in the war theater presumption has been the increased birth defects on the maternal side and that was done without IOM.  This maternal presumption is also a double standard as I discuss below the Ranch Hand mandate of a linear dose response for those children whose fathers served in Vietnam and must be associated to only the dioxin, TCDD.  Of course this the government numbers game not facts or science.

 

You must remember with no presumptive diseases yearly budget control by the VA and BVA becomes just a matter of stalling till someone dies and then you fill that slot – the budget remains “fairly constant” in the over all budget picture.  Without an ongoing war of course.  

 

Now that was reported by me about a year ago from the background noise I was hearing out of DC about presumptive disorders and disorders like diabetes.

 

Now the “supportive” IOM is having a meeting in San Antonio on Oct 4 and 5 on the “decision making process” for presumptive disability which is very critical to not such much us old guys now but the younger generation such as Gulf War guys and gals.

 

Of course, the one morning session from 8:30 to 12:00 is open to the public with limited seating.  Then I guess the rest will be behind closed doors.

 

I hope they will have more on their auditable process of decision-making process than what Dr. David Butler gave before congressional oversight.

 

When congressman Shays asked Dr. David Butler, Senior Program Officer, Veterans, and Agent Orange Reports, Institute of Medicine, National Academy of Sciences, when we have to look at what you do to determine compensation, what level should we be at?

 

His answer was:

 

"That's a policy rather than a scientific decision.  What the committees were tasked with doing was doing a comprehensive review of the scientific information and presenting a consensus opinion, if you will, looking at----"

 

As a failure analysis engineer, this means the whole IOM process is subjective and not even scientific, medical, or statistical proof.  If you have no defined protocol of what constitutes a valid negative or a valid positive then in reality all you have is what “someone thinks” based on many things such as bias, previous publicly made comments or opinions, or even previous work done on the opposite side of the fence; in fact the VACEH early on were scientists that had represented the chemical companies.

 

Congress apparently agrees with Dr. Butler because they have done nothing or said nothing to contrary.

 

How many of you as a congressman or senator would have stopped the meeting and said someone better explain this to me and now!  Since 1991 you have been working with no rules or sliding scale or anything documented.  Just whatever someone thinks as long as you have a consensus is OK and completely scientific.  I do not think so!  What about the other categories, levels, benefit of the doubt, state of present science, etc?. 

 

Yet, we get no such challenge.

 

Then lets do not forget at the exact same oversight meeting we had the leadership of this ???????? (If not for the women I would tell you what this whole thing has been from the very start and it starts with circle...!

 

DR. JOEL MICHALEK, SENIOR PRINCIPAL INVESTIGATOR, AIR FORCE HEALTH STUDY ON

EXPOSURE TO HERBICIDES, DEPARTMENT OF  DEFENSE; ROBERT J. EPLEY, DIRECTOR,

COMPENSATION AND PENSION SERVICE, VETERANS BENEFITS ADMINISTRATION,

DEPARTMENT OF VETERANS AFFAIRS, ACCOMPANIED BY R. SUSAN MATHER, CHIEF PUBLIC

HEALTH AND ENVIRONMENTAL HAZARDS OFFICER, DEPARTMENT OF VETERANS AFFAIRS;

RONALD COENE, EXECUTIVE SECRETARY, RANCH HAND ADVISORY

COMMITTEE, FOOD AND DRUG ADMINISTRATION; AND DR. DAVID BUTLER, SENIOR

PROGRAM OFFICER, VETERANS AND AGENT ORANGE   REPORTS, INSTITUTE OF MEDICINE,

NATIONAL ACADEMY OF SCIENCES

 

Mr. Chan. "I would like to raise an issue which I always felt all along, in doing this study and the work that we've done in gulf war illnesses, is that to me there's a fundamental problem between the gathering of the scientific evidence and research in general, versus policymakers in terms of their intent.

 

On one hand in science we really want to understand if there's a relationship, an association, or correlation. If we find there's a correlation, we then want to make sure that there is a statistically significant relationship. Once we have that, we want to make sure there's a linear dose response. That means the more stuff you have the worse you get, in terms of your physical well-being. And ultimately, we want to establish

cause-and-effect.

 

Now what we do here, is keep on raising the bar to achieve that end goal and it's a very, very important part of science to pursue in research.

 
Over time the science wants to establish sort of a beyond a reasonable doubt we are doing the right thing.
 
On the other hand, I think, Congress, through various legislation including Public Law 102-4, basically 
suggests that we wanted to give the benefit of the doubt to the veterans. 
 
That is, if they are sick, but we can't clearly establish cause 
and----

 

Mr. Shays. We just do not want to wait until they die before we help them.

 

Mr. Chan. I understand.

 

But my point is that the science doesn't quite support that approach. Giving them the benefit of the doubt

means that the risk for the people exposed is higher for than the normal population. So the risk means that the percentage of people who are exposed sick, versus those who were not exposed but sick of the same illness, is greater than one.

 

Science doesn't work that way. It emphasizes in a statistical significance of I want to make sure that 19

out of 20 times I'm correct in this decision. So as a result then what happens is that scientific information that----

 

Mr. Shays. I would feel more comfortable though, Mr. Chan, if this scientific research was being done by a party that was not a major player, and I would have a greater comfort level. And I believe that, as a policymaker, I have the right to determine that even there's not a shadow of a doubt, there's

every indication that, I'm happy to move forward and commit dollars to helping people. I just think you give the benefit of the doubt.

 

Folks this is what I have been trying to point out to Commissioner Grady.  Regardless of what Dr. Brown of the VA says - no one is giving any mandated benefit of the doubt and never has.

 

Mr. Chan. Then what happens is that when the Academy looks at scientific information what they're seeing are so-called the----

 

Mr. Shays. They found flaws in the----

 

Mr. Chan [continuing]. Beyond a shadow of a doubt. Because if you have a piece of paper that actually shows that the risk is only a little higher, you can't publish that article. It's not even in the data base for consideration. Do you see the problem?

 

You cannot publish the article?  Why the heck not and at least inform the Veterans and their family that they are going to at least as likely as not with a finding of an increased risk of incidence have a mortality or disability issue.  More than that - inform their doctors.  WHY?  Politics pure POLITICS and a government that could care less.

 

Mr. Shays. You do not think that information can be shared without certain caveats that there may have been a flaw here or there? That they cannot let other researchers look at it and come to certain conclusions?

 

The policy is, by congressional dioxin act of 1984 and by a court ruling in 1989, that with the unknowns all the Veterans need for an association is an increased risk of incidence or a significant correlation.  We do not need both; there is no and/or.  We certainly do not need what the NAS/OM and the Ranch Hand leaders were discussing under their own sworn testimony of raising the bar over and over again and then adding in some linear action that must be proven when there is no proof of these toxic chemicals having such cause and effect.  These are toxic chemicals not poison per se.  EPA concluded long ago they gave enough to animals that they should have gone hoofs up and they did not.   Instead they developed issues and slowly wasted away all the while still eating.

 

Therefore, in reality in my opinion we have congress, the NAS/IOM, and the VA talking out both sides of their mouth in an almost complete circle on what it is they are actually doing and the levels to which they are doing it.

 

One Veterans wife asked are they asking for levels of associations or individual presumption of what cannot be proven by anyone in the scientific world.  My answer would have to be yes as I discussed above.

 

You will notice that in no scenario does the Veteran have the right to pose questions to the IOM (the judge and jury) with statistical, medical, failure modes and effects, or question as to how the IOM can deny a particular association.  It is all one-way only.

 

I have no confidence Veterans are getting close to fair conclusion of their health status by the NAS/IOM in many issues; especially in the immune system damages, which in the 2003 EPA report concluded and NAS indicated they agreed with the findings.  Nevertheless, once again the NAS was right back to this threshold response issue at low levels.  There have only been two studies for low level exposures and both found the same thing. 

 

If both agree and the threshold level has indeed been established to some level for adult immunotoxicity at a much smaller threshold than a cancer then why are there no autoimmune processes associated?  Again, it would the damaging process not the ICD outcome; everyone is different.  {Politics by all party’s in my opinion.} 

 

When I see IOM statements such as: Yes, we know it can cause this we just do not know how to apply it to the Vietnam Veteran then that is a non-decision based on politics; not the congressional and court mandated levels of associations.

 

The VA in congressional testimony says they accept everything the IOM recommends.

 

The IOM says they can only recommend to the VA and what the VA does is outside their control.

 

IOM at the Disability Commission indicated they did not use Ranch Hand and not even looked at it except for Dr. Stellman who is not even part of the committees.

 

Ranch Hand says the IOM does use the Ranch Hand as anti-veteran and not meeting the advertised intent of congress and as already discussed applying mandates that do not even exist in science.

 

IOM is contracted by congressional mandate.

 

Congress seems to not want to make sure or have oversight that their “vote getting mandate façade” is followed through as they spouted off or suggested the intent of the mandate was to be for the Veteran.

 

Therefore, we do have a complete circle pointing fingers at each other and none of them are telling the truth. 

 

The IOM has had two meetings already on this presumptive issue and I have to say I have not followed what has been done so far.  

 

Is it logical and fair like all these processes should be?

 

Probably not and in favor of the VA or the government and with a lot of subjectivity in it to give benefit, not to the Veteran or widow but to the government.

 

Now as a purist myself and given the context of the strictest definition of diabetes type I and type II in my review of studies and scientific opinions there is some concern on my end of whether the strict definition of ADA diabetes I or II is associated to AO.

 

However, this is not a game of definitions if folks are dying and becoming disabled from this obviously significant increase or significant correlation of something to do with insulin and more to the point the use of insulin or the timing of insulin release.  Normally the pancreas can tell using feedback, how much it needs to make and can adjust.  Usage is something else.

 

Therefore, in the strictest definitions, I have to agree that in some scientific opinions and studies do not show this strict association.  However, it seems to point to something more sinister than defined Type I and Type II.  However, this goes back to testing methodology such as OGGT only rather than blood or A1C test.  OGGT clearly demonstrates insulin resistant issues that blood tests do not.

 

In trying to find out why the Ranch Handers in 38% of the proven diabetes cases their A1C tested well, I researched other possible issues.  The Ranch Hand scientists were interested in the definition of diabetes and that suggested to me that there might be something more here.  Moreover, the fact they stated as two other conditions insulin resistance and insulin hypersensitive was found.

 

Recently there has been talk of type III diabetes that now includes the brain; and particularly the hippocampus area of the brain.  While it is not conclusive, yet, as to the association of this brain insulin issue to Alzheimer’s, there are implications as stated by some scientists and needs more research.  They have discovered that not only the pancreas does its insulin thing but the brain does also and this condition is not related to type I or type II and actually originates in the central nervous system and is vital to brain cell survival.

 

In my book I included a paper submitted and accepted by the ADA on some diabetic issues that these Michigan University doctors suggested a more severe from of diabetes with no name as to increased painful sensory neuropathy, microvascular changes, and kidney damages long before the patient met the ADA definition of any kind of diabetes.  These doctors also suggested treatment in this Impaired Glucose Tolerance (IGT) and not after the ADA, definition is meet. 

 

Sound familiar to any of you with this nerve damage? 

 

How many of you had nerve damage before you tested to the ADA definition of a diabetic?

 

Could this explain the Ranch Hand findings of short-term memory loss, cognitive deficits, and other mental disorders found in the Army Chemical Corps spraying AO?

 

Who knows, as I do not think anyone is looking at any of this as it applies to our syndrome of unexplained manifestations.  Certainly not our government.

 

Then we now have the Type 1a and 1b, which is immune system mediated.  Not that AO has anything to do with the damaged immune system or resulting endocrine damages you understand.  Our government has said this is impossible.

 

In fact, in the discussion I read on these types, indicate this 1a takes place when your immune system gets confused and goes from a should be th1 response to a th2 response.   

 

Th1 cells drive the type-1 pathway (“cellular immunity”) to fight viruses and other intracellular pathogens, eliminate cancerous cells, and stimulate delayed-type hypersensitivity (DTH) skin reactions.

 

Th2 cells drive the type-2 pathway (“humoral immunity”) and up-regulate antibody production to fight extracellular organisms: type 2 dominance is credited with tolerance of xenografts and of the fetus during pregnancy.

 

Interesting enough some of the conditions associated with this are:

 

Celiac disease, hypothyroidism, hyperthyroidism, Addison’s disease, and pernicious anemia are some of the most prominent associated diseases.  How many of you can no longer make, store, or use Vitamin B12.  How many have had gastrointestinal issues or thyroid issues?

 

Moreover, oh by the way, created insulin antibodies are associated and it seems we once again have a T-cell mediated issue.

 

Naaaaa dioxins do not cause T and B cell immune system dysregulation - just ask our government.  Only how do they explain all the B and T cell cancers and not then have immune system mediation at many levels. 

 

It is all done by magic, the government’s fingers never left their hands as they rewrite our legacy.

 

Therefore, the bottom line there is some legitimate question as to the associations of the strictness definition of Type II but make no mistake there is an insulin issue associated; whatever combination of issues it is.

 

The bottom line for our White House/DoD, Congress, Ranch Hand, NAS/IOM, and all the other collaborators is:  

 

"At what level do you think Government should consider compensation? Should we have a no 
shadow of a doubt? The reason why I am asking the question is I have come to the conclusion, 
based on our work that we have done on gulf war illnesses, based on our review of Agent Orange, 
that I have to be honest with our veterans. By the time we will know the scientific data, you are dead. 
You will either have died early or you will have died in your old age in pain, but you will not get 
help from the Federal Government."
 
Congressman Shays Ranch Hand Congressional Oversight Meeting in 2000.
 

 

Who is ultimately responsible for this?  I say it is our Congress and White House after House but then that is my opinion.

 

Kelley