27 October 2012

DoD records agency torpedoes C-123 Claims!

JSRRC, Alexandra, Virginia
This week I had the opportunity to review my "C" file at the local regional office. Lesson learned...should have done so much earlier! It turns out that the Joint Services Records Research Center, the DoD agency responsible for informing the VA about any veteran's individual PTSD or Agent Orange claim, was totally off base and helped torpedo my VA claim.

In my case, which is likely the same as every other C-123 veteran who has approached the VA for service connection, the VA regional office did a fair job summarizing my claim and boiled down to a single question what was needed from JSRRC: "We are requesting a determination as to whether herbicide (sic) were found as alleged." An accurate answer would be vital, confirming my own description of the situation or leaving it unfounded.

JSRRC has boxes and boxes of supporting information collected in their normal course of activities. They gather unit histories, combat action reports, deployment orders...all that sort of stuff. But for some reason, last year when I was referred to JSRRC for information to support the C-123 exposure issue, they responded in the negative...nothing available, per their chief, Mr. Dominic Baldini.

So I oped to provide Mr. Baldini a large collection of what our C-123 veterans had collected since April 2011. I sent JSRRC flight logs, toxicological tests, contemporary news articles, "buddy letters", expert independent scientific opinions, findings by other federal agencies, photographs, emails and official correspondence. Enough any historian would agree to answer that question"was herbicide found as alleged." Sometimes historian want original source documents, and everything I sent is still readily available today from the various agencies if Mr. Baldini felt he couldn't accept what I sent as official enough for their purposes.

Faced with their mission objective of helping the VA help veterans substantiate claims, the JSRRC completely failed me and all other C-123 veterans. Instead of responding to the VA's inquiry about me with a summation of testing done on Patches and the rest of the fleet, supported by all the official documentation which thus far totals over 300 pages, the JSRRC simply torpedoed  us!

In respond to the VA question, the JSRRC uselessly and in error wrote:
"Unfortunately, the JSRRC in unable to verify or document that an (sic) air crewmembers were (sic) exposed to Agent Orange resulting from Agent Orange residue or dioxin contaminated aircraft or aircraft parts. Please refer to your (VA) website and the VA's determination for this information."
Four problems here which would ruin any C-123 veteran's hopes for a fair deal from the VA:
1. JSRRC did not address the question posed by the VA but instead said it couldn't "verify or confirm" aircrew Agent Orange exposure
2. JSRRC referred the VA back to the VA for supporting information (with the referral back to the VA's C-123 press release from VA Public Health) - ridiculous in the extreme to tell the VA  seeking source documents to read their own (erroneous) web page!
3. JSRRC was incorrect in their answer anyway, as ample information was available at JSRRC to establish aircrew Agent Orange exposure - in particular, the expert scientific opinion from Dr. Tom Sinks, Deputy Director, CDC Agency for Toxic Substances and Disease Registry, who stated:
"Given the available information, I believe that aircrew operating in this, and similar, environments were exposed to TCDD"
Dr. Sinks, speaking on behalf of his agency which is responsible for making such decisions, coudn't have been any clearer. His letter certainly was one item of verifying documentation JSRRC had to offer. His answer should have been adequate.
4. Finally, once JSRRC responded the VA did nothing to challenge  either the failure to address the original VA question, or to challenge the JSRRC response which clearly was in error - the VA had the same documentation from ATSDR and other sources

Another VA Claim Sunk - for inadequate proof!
Observation: We all need to personally visit our Veterans Affairs Regional Office (VARO) to review our records. Discuss with the staffer who will sit with you while going through the records any errors, omissions, whatever. You can request copies which they may be courteous enough to offer, but if not, simply FOIA the entire collection. Remember this "C" file at the VARO is separate from your medical records and you need to make sure both are complete and accurate. In my visit I uncovered three very important issues to address which will help make my case successful...well worth the trip downtown to keep them from letting your application be torpedoed!

This is terrifying. JSRRC and the VA can't be counted on to meet their own mission of accurately gathering and evaluating evidence of our Agent Orange exposure, and then when challenged by veterans simply ignore us!

26 October 2012

Harvard Med School Professor Offers Support to C-123 Veterans

Properly confining support to his own area of medical expertise, Dr. David Steensma of Harvard Medical School has reviewed the C-123 Agent Orange exposure issue, and comments:

"I am sensitive to this issue of appropriate expertise in part because one of the frustrations that my patients who are veterans have faced is that their BVA case reviewer is someone who doesn’t truly understand their disorder, such as a lung specialist or an endocrinologist commenting on MDS (or, in the situation you describe, a fish toxicologist reviewing the literature on human exposure to AO).  However if any of the C123 workers develops MDS or AML, I would be glad to write a supporting letter on their behalf."

Thank you, Dr. Steensma. Too often given the complexities of dioxin and the controversal nature of the VA's uninformed handling of veterans' claims, physicians are hesitant to lend their  assistance. So, if indeed you are a C-123 veteran facing a diagnosis  of acute myelodysplastic syndromes or of acute myelogenous leukemia, Dr. Steensma's letter of support can be vital!

25 October 2012

JSRRC Refuses to Release Contamination Proof!

Army Refuses to Release Proof of C-123 Agent Orange Exposure! 

Mr. Dominic Baldini,
Joint Services Records Research Center
7701 Telegraph Road Room 2008
Alexandria, VA  22315-3905
Dear Mr. Baldini,
Earlier this year, and also last year, I wrote to inquire about information JSRRC had concerning the C-123 “Provider” which I flew between 1974-1980. After my first FOIA approach to JSRRC I was told that you had no such information, and I then provided your agency a collection of official Air Force, GSA and other materials dealing with the C-123, in particular between the years 1972-1982 when the airplanes were assigned to the 439th Tactical Airlift Wing, Westover AFB, Massachusetts.

Yesterday I spent several hours at the Portland Veterans Affairs Regional Office, reviewing my application for Agent Orange benefits. My application was approved by the regional office, but Washington DC headquarters recommended denial on September 25, 2012.

I was very disappointed to learn that the VA had approached JSRRC for any supporting information regarding our aircraft, but your response was in the negative. In fact, all that was provided the VA was a partial quote from their own web site, a conclusion I disagree with and am working with the Senate Veterans Affairs Committee to address.

I don’t understand why our own unit histories aren’t able to provide much of the information requested by the VA. Besides the 439th Tactical Airlift Wing, the 439th Tactical Hospital, the 74th Aeromedical Evacuation Squadron (now 439th AES) and the 901st Organizational Maintenance Squadron would have detailed C-123 Agent Orange issues in their unit histories between the years 1972-1980. Further, HQ AFMC directed depot-level maintenance regarding the contamination by military herbicides as well as a special toxicological inspection of one aircraft (Tail #362) in 1979, an inspection of great interest throughout our Wing and certain to be in many documents.

Later, in 1994, the National Museum of the United States Air Force conducted a similar exam of the same aircraft, performed by Armstrong Laboratories Brooks AFB, Texas. This should have been made available to all requestors by JRSSC.

May I once again provide you the materials collected from Hill AFB UT, Davis-Monthan AFB AZ, Westover AFB MA, Wright-Patterson AFB OH, and Warner-Robbins AFB GA. Documents are also available from the General Services Administration, USAF School of Aerospace Medicine and other official agencies.

I’m sure you realize that a negative response from JSRRC to a VA inquiry results in the VA’s own finding against the veteran’s claim. Here is your response to the VA’s inquiry about our aircraft and its herbicide history:

 “Unfortunately. the JSRRC is unable to verify or document that air crewmembers were exposed to Agent Orange resulting from Agent Orange residue or dioxin contaminated aircraft or aircraft parts.
Please refer to your (VA) website and the VA's determination for this information.

As you can see, your answer didn't even answer the question VA raised, but improperly gave negative weight to the claims I've made, and carefully document to both JSRRC and the VA.

Mr. Baldini, I understand it is not within your area of responsibility or expertise to confirm or deny the scientific question of dioxin exposure by aircrews, but you could at least have answered the question correctly. Further, JRSSC having been provided official documents addressing the issue of herbicide contamination as well as aircrew dioxin exposure, so it was certainly your responsibility to send them to the VA. Your answer to the VA that no such documentation exists creates an official response that there is no such documentation and the veteran’s claim without foundation. Were you determined to prevent my successful, and just, claim for Agent Orange benefits?

We flew those aircraft and the Air Force has documented the contamination of them. Simple enough, and within the charter of JSRRC to address. Isn't it fair to conclude your response to VA completely ignored the documents you have and served to help prevent approval of my VA application?

for the C-123 veterans:

Wesley T. Carter, Major, USAF Retired
Chair          rustysilverwings@gmail.com

Letter, Carter to Baldini
Portland VARC records re: Carter
Assorted USAF documents

24 October 2012

They Shall Not Pass: VA Official

1918 French Soldier at Verdun
They shall not pass. This, the famous pledge by French military leaders in World War I as they defended the famous fortress city of Verdun from the attacking German army. Over 200,000 lives were lost, but the fortress city held, and eventually France was victorious.

They shall not pass. This, the true meaning of the infamous quotation below made by the Director of the VA Compensation Services, as he dealt with C-123 veterans' Agent Orange exposure claims. In his September rejection of my own VA claim, he challenged science and medicine with his statement:
"In summary, there is no conclusive evidence that TCDD exposure causes any adverse health effects."
"I don't frickin' believe it" this, the first comment received from an internationally-respected dioxin scientist, reading in shock the director's surprising comment. Believe it, sir. the director wrote his comment in a very formal denial of benefits, addressed to the Portland  (OR) Regional Office of the VA. The director's effort to "correct" countless scientists, physicians, and legislators would seem to be tilting at windmills, but for the fact that the director is the very fellow to make the VA decisions. And I don't frickin' believe it either!

In French, "Ills ne passeront pas/On ne passe pas." They shall not pass. Such determination of French military leadership in 1918 cost the lives of 200,000 troops...a price they were willing to pay. Compensation and Pension seems equally determined with its own "They shall not pass" position prohibiting consideration of C-123 veterans' dioxin exposure claims, but here the suffering this statement costs will be our own...not VA's. 

VA defies the world by denying TCDD is the most toxic of toxins, the most dangerous toxin on earth and a Class 1 carcinogenic. VA's statement tries to prove wrong the collective judgements of medical, scientific, environmental, legal, and legislative leaders. But, however deceptive, this statement stands because, not of its truthfulness but merely because of the director's position. It is yet another nail in our coffin and evidence of the VA's determination to prevent additional veterans turning to it for medical care. They shall not pass!

Not on his watch!

23 October 2012

C-123 Veterans Respond to VA Undersecretary Allison Hickey

Voice of the 74th AES, 731st TAS & 901st OMS

Honorable Allison Hickey
Undersecretary for Benefits
The Undersecretary for Benefits Allison Hickey graciously wrote us about the VA's perspective on C-123 veteran exposure to dioxin. We disagree in many places with General Hickey's letter but much appreciate the attention she has given our situation. We ask for reconsideration in our response to her, posted below:

(continued to page 6...click to read further)

We've got it all wrong - Dioxin not harmful! (VA)

In the 25 September 2012 denial of my own application for Agent Orange benefits, the VA Director of Compensation Services (C&P) decided to redefine the fields of toxicology, environmental science, oncology, and others with his conclusion below. Going overboard thus, C&P overruled the Institute on Medicine, World Health Organization, Society of Toxicology, American College of Medical Toxicology, National Institutes of Health, the United States Congress and much of the VA itself when he assured us:

"In summary, there is no conclusive evidence that TCDD exposure causes any adverse health effects." C&P

Fellow veterans: do you draw comfort from his assurances, or do you feel C&P offers this amazing statement in this dedication to insure one more veteran is denied medical care at the VA?

If C&P has it right, scientists around the world have it wrong by their long-established conclusion that TCDD is the most toxic chemical known to science. TCDD is classified as a Group 1 carcinogen by the International Agency for Research on Cancer. 

Does C&P have it right in dismissing world-famous toxicologists' opinions that C-123 veterans were exposed to dioxin aboard our airplanes? 

"No adverse effects." This shows the lengths the VA will go to in preventing fully qualified veterans' access to already-overstretched VA medical care.

20 October 2012

AFMC Agrees to Release C-123 Agent Orange Documents!

In response to repeated Freedom of Information Act requests, HQ Air Force Material Command Friday agreed to release the materials collected by the Air Force School of Aerospace Medicine during their preparation of the C-123 Agent Orange study!

Because the aircraft were all destroyed as toxic waste in 2010, such documentation is all experts have to  consider in evaluating aircrew and maintenance personnel exposure. While it was never actually "Secret" or any other classification, the Air Force Office of Environmental Law did direct in 1996 that all "information be kept in official channels only" so it has been visible since 2011.

By agreeing to release the materials at no cost, the AF didn't use money to build an impossible barrier as did the VA who insisted on $4500 to allow C-123 veterans to review the materials used to prevent our gaining recognition for Agent Orange exposure.

Now we will just have to wait a bit, as the separate request for expedited research and release was denied...none the less, once available we will post on a special Google Docs site for everyone to investigate.

Good news! Now, if only we could get each of our veterans to get supporting statements from their physicians! If you have prostate cancer or any other Agent Orange-presumptive illness, get your doc to write that, in his/her professional opinion, it is as likely to as not" be caused by your Agent Orange exposure aboard the C-123.

A couple of those letters are all we need!

Harvard Physician Explains Dioxin History & MS

Agent Orange, United States Military Veterans, And Myelodysplastic Syndromes

Published: Oct 18, 2012 3:09 pm

Whenever we experience a strange and unexpected event, especially a personal calamity, we naturally want to know: What caused it?  Could it have been prevented?
For thousands of men and women who served in the Armed Forces of the United States during the Vietnam War era, questions about causation of serious illness, especially when the diagnosis is an unusual condition such as a myelodysplastic syndrome (MDS), can stir up an old ghost: the misty specter of Agent Orange.
I often see Vietnam-era military veterans in my clinic who have been diagnosed with MDS, and they always ask me, “Could Agent Orange exposure have contributed to my bone marrow problem?”
Whether there is a connection between Agent Orange exposure and subsequent development of MDS, and whether veterans who develop MDS are entitled to compensation under the Agent Orange Act, has been an area of some controversy in recent years.
Below, I review some of the facts about Agent Orange and its potential link to MDS, and then discuss some of the complicated politics.
What Is Agent Orange?
Agent Orange is an herbicide that was sprayed in large volumes on the jungles of Southeast Asia during “Operation Ranch Hand” in the Vietnam War between 1962 and 1971.  It was used to kill plants that might provide cover to enemy combatants and to disrupt agricultural production (e.g., destroy rice paddies) in hostile areas.
Agent Orange was also sprayed in the Korean Demilitarized Zone in the late 1960s, and it may have been used in other locations, too, such as in tests on U.S. domestic military bases or to control unwanted growth in National Forests.  However, details about domestic use have been harder to confirm.
Agent Orange is not orange like Fanta soda pop; instead, it was named that because of the color of the barrels it was shipped in to Asia, more than four decades ago.
There were other “Rainbow herbicides” sprayed in Vietnam, such as Agent Blue and Agent White, but Agent Orange was the most widely used, and is the agent most clearly linked to health risks.
Agent Orange Is Toxic
Agent Orange was meant to be a 50:50 mixture of two herbicides with lengthy chemical names, 2,4,5-trichlorophenoxyacetic acid and 2,4-dichlorophenoxyacetic acid (the latter is still widely used globally as a weed killer).
Unfortunately, the final product was contaminated with a synthetic byproduct, 2,3,7,8-tetrachlorodibenzo-dioxin – TCDD, commonly called “dioxin” – created during the manufacturing process by Dow Chemical and Monsanto.  TCDD is a known carcinogen and is recognized as harmful by the World Health Organization’s International Agency on Cancer, the U.S. Environmental Protection Agency, and other global health agencies.
Military veterans have also testified that in the field, Agent Orange was frequently mixed with other unhealthy substances such as kerosene, JP-4 jet fuel, and other toxic aromatic hydrocarbons (i.e., molecules with a benzene ring), in order to facilitate spraying from aircraft.
The Red Cross of Vietnam has claimed that more than 400,000 Vietnamese citizens were killed and a half-million children born with birth defects because of Agent Orange and TCDD exposure in the 1960s.  A number of these victims filed an unsuccessful lawsuit against Dow and Monsanto and dozens of other smaller companies in 2004.
While there is a clear connection between exposure to aromatic hydrocarbons and marrow failure – a risk of aplastic anemia and leukemia in workers with occupational exposure to benzene was recognized before 1920 – just how TCDD contributes to subsequent development of cancer or other diseases is less clear, which has caused lingering questions about epidemiologic association.  The minimal, “safe” dose of exposure to such agents is unknown. The amount of toxin exposure that results in marrow disease or cancer is likewise not known, but based on other exposures, is clearly different for individual patients, varying in part based on the levels and function of detoxifying enzymes and DNA repair proteins in the patients’ cells.
Agent Orange Has Been Linked To A Number Of Diseases
Throughout the 1970s and 1980s, there was growing concern about illnesses in U.S. service personnel as a result of being exposed to Agent Orange.  Therefore, in 1991, as part of the Agent Orange Act legislation, the U.S. Congress asked the Institute of Medicine (IOM) to review the health effects of Agent Orange and its TCDD contaminant, as well as other herbicides used for military purposes.
The IOM is an authoritative non-governmental national academy that includes more than 1,000 distinguished physicians and scientists, who are appointed to advise Congress on policies related to health and medicine.  Various IOM committees and task forces have been formed to address specific health issues.
The IOM published its first report on Agent Orange in 1994, summarizing a large body of epidemiologic studies that collectively found that certain diseases were occurring more commonly in veterans exposed to Agent Orange than in unexposed matched control populations.
Does Agent Orange Cause MDS? 
There is considerable circumstantial evidence.
In multiple case-control studies, individuals who work in agricultural and petrochemical industries have been found to have a higher incidence of MDS than those who work at other occupations.
The fact that an exposure is remote in time doesn’t mean it can’t contribute to MDS.  A major epidemiological study published in 2011 demonstrated that among Japanese individuals exposed to the Nagasaki and Hiroshima atomic events in 1945, MDS and acute myeloid leukemia continued to be diagnosed at an increased rate when compared to unexposed people of the same age, even 50 years later.
If Agent Orange and hydrocarbon exposure contributes to MDS development years later, what might the mechanism be?  Radiation exposure after an atomic bomb explosion, like certain types of chemotherapy or toxic chemical exposure (aromatic hydrocarbons again), causes cells in the body to undergo DNA damage, increasing risk of subsequent cancer development if the damage is not fully repaired by the cells.  If the damage occurs in the wrong set of genes, a disease like MDS results.
Recent whole-genome sequencing experiments have confirmed that MDS, like other neoplasms (cancers), require multiple genetic events to occur over a series of time before the full-blown condition develops.  If the first of these required events happened as a result of a chemical injury in the 1960s or 1970s, that DNA injury in a bone marrow cell could have made it more likely that MDS would develop later on as a result of subsequent events.
Of course, in an individual case, it can never be said with absolute certainty that a particular exposure “caused” a cancer – just as it cannot be said with certainty that the individual cigarette smoker who develops lung cancer did so specifically because of their smoking history.  We all know George Burns-types who smoke heavily yet live to age 100, as well as people who get lung cancer at age 30 without ever smoking at all.  Life is unfair that way.  So epidemiologists talk about risk factors.
When a disease is common, it can be more difficult to demonstrate that there is a true increase of the disease in people exposed to a risk factor compared to unexposed people.
Men and women who were 22 years old in 1968 (the average age of military combatants in the year of peak U.S. deployment in Southeast Asia) are 66 in 2012, and getting into the peak years of MDS risk (epidemiologic studies in the U.S. indicate that the median age at which MDS is diagnosed is about 71 or 72 years old).  So, a lot of people who served in Vietnam are now at the ages where they might have gotten the disease anyway.  But given what we know about MDS biology, it seems much more likely that Agent Orange and accompanying toxic hydrocarbon exposure contribute to MDS than to, say, ischemic heart disease or prostate cancer.
Disability Benefits For U.S. Veterans
As a result of the IOM’s  report, the U.S. Veterans Administration (VA) agreed to provide disability compensation (i.e., a monthly monetary allowance) for veterans who develop one of the diseases linked to Agent Orange.  Notably, veterans do not have to prove that they actually had Agent Orange sprayed on them to have their illness deemed “service-connected” and be eligible for compensation, only that they served in Vietnam sometime between January 1962 and May 1975.
Every two years, the IOM updates its list of Agent Orange-associated diseases, which the VA calls “presumptive diseases.”  The current list can be found on the Veterans Administration website.
It is notable that numerous hematologic malignancies – chronic B cell leukemias, multiple myeloma, light-chain amyloidosis, Hodgkin disease, and non-Hodgkin lymphoma – and some other cancers are on the “presumptive” list, but not MDS or acute myeloid leukemia.
It is also remarkable that many of the conditions on the “presumptive” list, such as type 2 diabetes mellitus and ischemic heart disease, are extremely common in the general U.S. population and are incontrovertibly linked to other non-Agent Orange risk factors, such as obesity, high cholesterol, family history, or cigarette smoking.
Veterans Administration Politics
Clearly, despite the non-partisan and authoritative nature of the IOM, there is more to the decision about what makes it onto the VA “presumptive” list and what does not than just science and epidemiology.
Finances clearly play a role; given the hundreds of thousands of Vietnam-era veterans with common conditions like ischemic heart disease, billions of dollars are at stake.  And whenever that much money is in play, shenanigans will inevitably occur; several Congressional representatives have lobbied for diseases to be included or excluded from the “presumptive” list, as if the science could bend to political will.
Veterans who develop a malady that is not on the VA “presumptive” list can still apply for service connection benefits, but they have to show both that they were exposed to herbicides during military service, and that there is “an actual connection” between their disease and Agent Orange exposure.  Defining an “actual connection” is left to case reviewers appointed by the VA, who are rarely specialists in the disease under question.

MDS Is Often Misunderstood
I have read a lot of correspondence related to these applications and appeals for VA benefits, and it is clear that the reviewers are often confused by the causes, biological nature, classification, effects on patients, and severity of MDS.  This confusion has contributed to considerable ongoing inconsistency in VA decisions, including the approval or denial of benefits to veterans with very similar or even identical diagnoses and degree of impairment.
Unlike the U.S. Supreme Court, Board of Veterans Appeals (BVA) decisions are not precedent setting and are based on a judge’s findings in each individual case.    When veterans submit their applications and supporting documentation, the outcomes are a crapshoot.
Furthermore, some veterans have been told by BVA administrators that their MDS is indeed considered to be service connected… but that since MDS is only a form of anemia, they are not “disabled” and therefore not entitled to any compensation.
These judgments reflect a grave misunderstanding of the nature of the disease.
MDS is not just anemia – it is a life-threatening marrow failure state, associated with severe fatigue, among other symptoms, and a risk of death from infection or bleeding.  Nor is MDS a benign condition; MDS is a neoplasm (malignancy) in almost all cases, and MDS is classified as a cancer by the World Health Organization and by the U.S. National Cancer Institute.
A history of problematic MDS-related terminology, including “preleukemia” or “refractory anemia” (see my related Beacon column), may be contributing to the judges’ confusion about the nature of MDS, but that is not an excuse.
How The MDS Community Has Reacted
A number of veterans whose lives have been affected by MDS have become active advocates for more consistent treatment of veterans by the VA and for better understanding of the disease.
For instance, a veteran named Larry Sauger from Michigan has set up a website  to bring together veterans suffering from MDS and to serve as an information clearing house.
Another Vietnam-era veteran, Bob Macfarlane from Florida, went so far as to obtain data on MDS diagnoses from the VA via the Freedom of Information Act, which his calculations indicate is diagnosed at a much higher than expected rate among veterans.  Bob has appealed directly to VA Secretary Eric Shinseki with his findings (thus far without results), and also went to Chicago with Larry Sauger in late 2010 to testify before the IOM’s “Committee for Review of the Health Effects in Vietnam Veterans of Exposure to Herbicides.”
However, despite the efforts of these men and other advocates, when the IOM issued its bi-annual report in September 2011, the Institute decided not to add any more conditions to the current list of presumptive diseases (the IOM report, at 800 pages, makes a fine treatment for insomnia).  In this document, MDS merits barely a footnote.
Still, Bob emailed me a few weeks ago that he has been told by a number of widows of ex-soldiers who have died of MDS and related conditions, “My husband did not die in Vietnam– he died because of Vietnam.”  And so, like an old soldier would, he continues to struggle on with this as his motivator.
John Huber, executive director of the Aplastic Anemia & MDS International Foundation, has begun organizing information sessions specific for veterans at Foundation-sponsored patient and family education events across the U.S., in order to give veterans a forum to learn about and discuss Agent Orange and VA-specific concerns.
John is constantly working with MDS patients and their families, and he has been particularly troubled by the documents from the VA in some veterans’ cases suggesting that MDS is simply a form of anemia, akin to iron deficiency or kidney failure-associated anemia, or a “mild” problem.
As he says, “The danger and the severity of MDS are not debated in the clinical medical community, and to call MDS anything less than a group of potentially lethal diseases is an error that belittles the men and women struggling with the disease, or who have died of complications of the disease.”
When the Vietnam War ended in April 1975 with withdrawal of U.S. troops from Saigon, I was four years old.  I can remember watching the helicopters on a black and white television in our family den – a real 1970s classic with shag carpet and faux paneling – and hearing my parents (or maybe it was Walter Cronkite) saying something about the “long nightmare” finally being over.  That judgment was premature.  Nearly 40 years later, the Vietnam conflict’s dark legacy continues, including in the MDS clinic.
Dr. David Steensma is a physician at the Dana-Farber Cancer Institute in Boston and an Associate Professor in the Department of Medicine at Harvard Medical School. His primary area of research focuses on myelodysplastic syndromes and related conditions.
Photo of Dr. David Steensma, physician at the Dana-Farber Cancer Institute and professor at Harvard Medical School.

16 October 2012

VA Leader Responds to C-123 Agent Orange Exposure Concerns

Recently my own benefits application was rejected by the Director of the VA Compensation Services on the faulty basis that the highly respected scientists confirming our exposure were unqualified to make observations because they are scientists and not physicians. His letter will be interesting to the VA experts who, too, are scientists and not physicians.

Also prohibiting C-123 veterans' access to VA medical care is Under Secretary for Benefits Allison Hickey, herself a retired Air Force general officer and pilot. Her letter to the C-123 veterans was received 3 October:
Her introduction of secondary exposure was a surprise. While our aircrews certainly did have secondary exposure to TCDD aboard the C-123, our main exposure was instead primary and mostly dermal. We physically touched military herbicides which remained on the aircraft following their Agent Orange spray missions during Vietnam. Primary!  As well as secondary. And while dermal absorption of TCDD can be slower because of the skin barrier, dermal generally includes the ingestion route was well. 

Too bad there wan't any place on the C-123 to wash our hands!

Remember readers that our exposure, while it may have been "low concentration," was long-term...a full decade and many, many years before the first official tests which established the aircraft as "heavily contaminated." The airplanes were much more toxic when we flew them than later, after the dioxin had degraded.

Every study about dioxin which touches upon long-term and short term exposure stresses the fact that long-term low dose exposure like ours is even worse than short-term, high dose exposure.

Our absorption of dioxin added up. We sure wish the logic of our exposure added up to the VA also!

08 October 2012

Ah, the smell! Malathion or Dioxin? Does it even matter?

One of the first lessons our C-123 veterans learned about Agent Orange contamination in the airplanes, especially in Patches, was that dioxin is odorless. What we were smelling wasn't dioxin but instead, malathion residue from Patches' insecticide spray missions over Vietnam.

Thus, many "experts" dismissed our dioxin exposure claims when we brought up the foul smell by pointing out this error. However...the smell indeed does indicate the persistence of the Agent Orange contamination.

Why, or how? We veterans don't dispute the lesson learned regarding where the terrible smells came from...it was very probably the malathion. We contend, however, that if the malathion persisted to the point of sickening the crew as it did so often, and if it forced us to fly with the heat off or even the cockpit windows open, or even avoid scheduling the aircraft altogether, that dioxin had to be present in significant quantities.

Our maintenance folks like Charlie Fusco remind us of countless efforts at cleaning Patches. Of scraping that black or dark brown "goop" with putty knives and screwdrivers to get rid of it. Of tech bulletins from Warner-Robins detailing cleaning instructions with specific detergents and even the recommendation in 1979 by Air Force toxicologists that it would probably be necessary to remove the wings and remove the cargo deck to get out enough of the "goop" to improve the situation.

We are also reminded that, in Vietnam, the malathion missions by Patches were after her years of spraying Agent Orange.

It is clear that Agent Orange "goop" got mixed in with malathion "goop". The Air Force tests on Patches in 1979 and 1994 confirmed, in the words of the toxicologists, that the airplane remained "heavily contaminated" with dioxin despite all efforts over the ten years we flew her, and despite all the efforts of the Ranch Hand crews to keep her clean, and despite at least one depot-level maintenance and cleaning cycle that we know of...there were perhaps more. It even took three decontamination efforts on Patches at Wright-Patterson before the airplane was reasonably safe to enter.

How can any VA administrator or physician fail to see we were exposed?

Eventually one of our veteran's claims will reach the Board of Veterans Appeals or the US Court of Appeals for Veterans Claims! There, the justice of our exposure claim will be clear. The Air Force tests over several decades. The Air Force efforts by AFMC JAG to restrict the contamination information to "official channels only." The Air Force decision to quarantine the contaminated airplanes at the Davis-Monthan Bone Yard. The Air Force decision, approved by the Air Staff, to destroy the remaining airplanes because of the lingering contamination and the threat of an EPA $3.4 billion fine. The multitude of independent scientific opinions confirming our exposure. The finding by the CDC/ATSDR that aircrews were exposed to 200x the Army's TG312 cancer screening threshold. The finding by Dr. Jeanne Stellman that our aircrews were exposed to as much or more dioxin than ground troops during Vietnam. It will be clear that our aircrews have met the VA's "as likely to as not" exposure requirement with more evidence than any veterans population except the guys in Ranch Hand.

It will be quite revealing - and frightening - when one of our veteran's claims before the court is from a female crewmember. Remember that dioxin accumulates in body fat, and has a half-life of about seven to ten years. Remember, dear VA, that once a woman is exposed to dioxin as in our airplanes, the dioxin is concentrated and can be passed on via lactation after childbirth. Remember that numerous scientific studies establish the dermal route of dioxin exposure, despite the VA pretense of the human skin being a 'near-perfect barrier." Washington State University's recent study revealed:
Dioxin builds up in the body and has up to a decade-long half-life in humans, so scientists say a woman who becomes pregnant even 20 years after exposure is at risk of transmitting the consequences of her exposure to later generations.
So we must ask, "why can't the VA permit the individual veteran's claim to be accepted without challenge to the issue of exposure?"

07 October 2012

Then...and Now. Before & After Pictures of C-123 Agent Orange

BEFORE they told us about dioxin contamination

AFTER they told us about dioxin contamination

Sadly, our "after" squadron reunion pictures show so very, very many of our dear friends gone already.

Gone from diabetes, prostate cancer, ALS, heart disease and all the other "joys"of dioxin exposure aboard the C-123 which VA promises us was so very safe.

Dr Linda Birnbaum & Dioxin 2012 (Australia)

Birnbaum talks science and strategy at Dioxin 2012

NIEHS/NTP Director Linda Birnbaum, Ph.D., was one of nearly a thousand delegates attending Dioxin 2012, where she made three invited oral presentations and was lead researcher on four poster presentations.
The meeting, held Aug. 26-31 in Cairns, Queensland, Australia, attracted scientists from throughout the world to the 32nd International Symposium on Halogenated Persistent Organic Pollutants — Dioxin 2012,  offering Birnbaum an international forum for raising awareness of NIEHS advances in the promotion of environmental public health.
The program covered a broad range of core topics on analytical and environmental chemistry, environmental and human toxicology, epidemiology, and exposure assessment, as well as regulation, risk assessment, and management. Focal points for the meeting were emerging contaminants, marine and ecotoxicology, and chemical regulation and policy.
READ MORE:http://www.niehs.nih.gov/news/newsletter/2012/10/science-dioxin/index.htm

Aircrew Exposure to Dioxin Was PRIMARY, not Secondary!

74 AES & C-123 on Cross-Country Mission
In her 1 Oct 2012 letter, Under Secretary for Benifits Allison Hickey explained to me that the VA has no basis for considering "secondary exposure" Agent Orange claims, grouping our C-123 veterans into that category. We, however, were exposed in a direct, or primary manner! Not at all the same thing!

Let's look at "secondary exposure":

It is a simple thing. Something exposes or contaminates a second thing. Then a third thing is also exposed or contaminated by contact with that second...a secondarynexposure by the contaminant. When the third thing (or person) is exposed, that's secondary exposure.

Secretary Hickey entirely misses the point. Our airplanes remained contaminated with Agent Orange. Our intense, long-term contact with our airplanes exposed us to that contamination...in an initial, direct and primary, NOT secondary manner! Dioxin residue remained in the aircraft...important point!

Here is an occupational medicine definition of "secondary exposure":

"Secondary exposure: This term often refers to exposure to a different individual from contaminants on or in another individual, or on or in one thing from another thing; the term may also refer to exposure of a given part of an individual's body as a result of from contamination on or in some other part(s) of the individual's body."
The VA trying to stretch the truth in their secondary exposure scenario - claiming our touching some item on the C-123 that earlier itself touched and was contaminated by Agent Orange residue would not cause us harm. Perhaps so, but that is not the only way in which we were exposed...instead, our exposure was primary. We touched the dioxin itself.

Our aircraft were contaminated. Dioxin and other military herbicides remained on the aircraft until the C-123 fleet had to be completely destroyed as hazardous waste in 2012. Our exposure aboard was primary. According to the first comprehensive test done in 1994 (23 years after the last spray missions) they still were "heavily contaminated" on "100% of the test surfaces" when examined by toxicologists from the USAF Armstrong Laboratories.

But it is worst than that! We started flying these aircraft in 1972, just one year after the last Vietnam spray missions. Dioxin has a half-life of seven years on most surfaces, so the dioxin residue remaining on the C-123 was "fresh" and non-degraded. More intense, more contaminated...far more dangerous in the years 1972 to 1982 than suggested by tests completed nearly a quarter century later as General Hickey implies. Shouldn't the conclusion be that if the airplanes were a danger to public health in 2000 (as AF toxicologist Dr. Ron Porter testified in federal court), the airplanes were yet more dangerous in earlier years before the dioxin began to dissipate?

The CDC/ATSDR agrees that 1994 tests, dangerous enough in themselves, means the C-123 fleet was even more dangerous in earlier years. In his letter to the C-123 Veterans Association, Dr. Tom Sinks (Deputy Director) concludes our crews were exposed to a "200-fold greater cancer risk than the Army's screening value" suggested in the Army's gold-standard publication TG312. ATSDR even found that "TG312 likely understates the daily exposure of Air Force flight personnel in side the contaminated aircraft." The VA says our veterans were not exposed...but the ATSDR says we were and that our exposure was even worse than the "200 fold greater cancer risk" indicated by the 1994 tests. General Hickey...how bad does it have to get?

The VA's argument seems to shift. Earlier efforts to block us from medical care were advanced by the VA's Public Health folks who said the dioxin remaining on the aircraft could not expose us via dermal route because of their novel "dry dioxin transfer" concept plus the pretense that the skin is a near-perfect barrier to dioxin exposure. Science, as well as more experienced researchers, disagree completely. "Unscientific" was the toxicological scientists' description of the VA's hodgepodge of barriers raised against us.
Where VA C-123 reports belong!

We ask that the VA, our fellow veterans and the Air Force remember that the C-123 fleet came to us the year after Vietnam missions. It began being cleaned, and cleaned, and cleaned, and cleaned because the stench (from malathion and other contaminants) persisted. We cleaned those airplanes as best we could for the ten years we flew them, and even after removing all the contamination we could physically scraping and also using cleaning solvents recommended by the Air Force Material Command, we were still flying into danger.

 There was a "goop" of congealed military herbicides and malathion throughout the aircraft and especially in the wing boxes, under the cargo deck and nooks and crannies in the cargo area where spray had accumulated. Our aircraft went through at least one depot-level attempt to clean out the contamination. But the dioxin persisted, and was first identified in 1979 at the insistence of the 439th Tactical Hospital...and dioxin along with other military herbicides was confirmed. General...our contact with that goop was primary exposure! Even tests completed at Davis-Monthan in 2009 continued to show the aircraft continued to have dioxin present in all aircraft.

General Hickey, how bad does it have to get? How dedicated is the VA to creating mythical arguments to prevent us getting care for our Agent Orange illnesses? What about that "duty to assist?" Isn't anyone back at 810 Vermont on our side?

06 October 2012

VA Undersecretary for Benefits Writes re: C-123 Agent Orange

Under Secretary for Benefits Allison Hinkey(Brig. Gen. USAF Ret.)
Undersecretary for Benefits Allison Hickey wrote me yesterday to review the VA's position denying C-123 veterans service-connection for Agent Orange-related illnesses. We are especially respectful of her background as an aircraft commander, retired general officer and Air Force spouse. And we know from her appearance on the Hill she can really control her temper!

Secretary Hickey used her letter to explain a new point, not previously raised by the VA in preventing our claims: she writes "Currently, there is no equivalent legal basis for acknowledging "secondary" or "remote" Agent Orange exposure, such as that from contact with material or equipment previously used in Vietnam."

Here Secretary Hinkey misses the point. We are claiming primary exposure, as well, perhaps, as secondary, with the Agent Orange residue left on the airplane, as identified by every Air Force test between 1979 and 2009! As with the various successful claims by veterans who've been exposed in locales other than Vietnam, we have made clear that we were indeed not in Vietnam (other than our own many Vietnam veterans) but that our duties directly exposed us to "heavily contaminated" dioxin-laden aircraft - NOT to a "secondary" exposure.

She writes "...the potential for exposure to dioxin from flying or working in contaminated C-123 aircraft, years after Vietnam, is unlikely to have occurred in levels that could affect health." I offer a couple points here:
1. We flew these airplanes immediately after their use in Vietnam. The last spray missions were 1971 and we started flying (and cleaning out!) the C-123 in 1972. The first tests establishing contamination were in 1979 and the AF Armstrong Labs reported the airplanes still "heavily contaminated" more than two decades after Vietnam! Before being tested in '79 the aircraft had already gone through depot-level attempts to clean them out as well as base-level physical scraping the "crud" away.
2. Dioxin has a half-life of seven years (other than in direct UV) so, as the Agency for Toxic Substances and Disease Registry pointed out, the airplanes were MORE contaminated in earlier years 1972-1982, plus our exposure was not for the year or so Vietnam vets spent in-country but instead a full decade aboard the C-123!
3. The Agent Orange Act of 1991 and other statutes set no threshold for how much dioxin a veteran must be exposed to. The laws say "exposure". The laws say the Secretary of Veterans Affairs must weigh scientific and medical evidence in determining a veteran's claim for exposure - we suggest our scientific evidence is ample, sound, persuasive and overwhelmingly more expert than that of the VA's young toxicologist assigned to prevent our claims. The Secretary should be aware that the VA was unable to complete any new research because the airplanes were all destroyed in 2010, so they were only able to do a literature review. We point out that their selection of certain articles and failure to cite others was a blatant effort to twist science - to use (or incorrectly interpret) publications only to reach a pre-determinated negative conclusion. Hardly science!

The law, as we are given to understand it, requires a veteran to prove "boots on the ground" in Vietnam, or to meet a tougher standard of (1) proving the existence of contamination and (2) the route of exposure and (3) the presence of an Agent Orange-recognized illness and the nexus of that illness to the Agent Orange exposure. We have met this burden of proof. In spades!

How have we done this? How have we met every requirement thrown at us?
1. Contamination: Air Force tests done by qualified toxicologists established the presence of large amounts of military herbicides, including Agent Orange, as early as 1979 as reported in the Conway report. Conway also notes that the request for his survey came from the 439th Tactical Hospital, and followed years of effort by maintenance personnel and civilian depot facilities to remove the smell (associated with malathion, not Agent Orange) and black and brown gooey substances found throughout the fuselage. 
2. Route of Exposure: Toxicologists have weighed in this to support C-123 veterans. Drs. Jeanne Stellman, Fred Berman, Joe Goeppner, Wayne Dwernychuk and Tom Sinks explained in detail to the VA our exposure was via dermal, inhalation and ingestion routes. VA countered by creating a concept of "dry dioxin transfer" to explain how we were able to be in a contaminated airplane without  being exposed, but this has been debunked by toxicologists. Dr. Stellman flatly labeled it "unscientific!" We note the primary person assigned by the VA to create a position paper against our eligibility is a very recent PhD whose background was mollusk toxicology. We note the multitude of internationally recognized toxicologists who have established our exposure as "more likely than not."  A simple Google or Scholar search provides for a meaningful comparison of reputation and credibility - one that no court in the nation would fail to find persuasive.
3. Agent Orange illness & medical nexus: Of course, we allege no new Agent Orange illnesses, and rely on the already-establsihed list recognized by the Department of Veterans Affairs. Each of our veterans seeking medical care from the VA can and should evidence one of those illnesses to be qualified for VA care. The medical nexus between an individual veteran's exposure and an Agent Orange illness is, for all practical purposes, completely impossible to prove. Instead, we again rely on the VA's own policies as well as the various IOM reports. My own VA application was recently denied by the VA's Director of Compensation Service. He claimed that the four PhD toxicologists who detailed my/our Agent Orange exposure aboard the C-123 were not qualified to make their recommendations because they weren't physicians. Well, neither were most of the VA staff who worked this issue, and neither were any of the authors of references cited by them in their reports!

Secretary Hinkey, please spend some quality time with VHA to discuss the assignment given to construct a position for the VA's use preventing C-123 veterans' eligibility for VA care. Please spend some quality time with Dr. Tom Sinks, deputy director of the CDC/Agency for Toxic Substances and Disease Registry and Dr. Jeanne Stellman as they explain how our crews were exposed to long-term, low-dose TCDD toxins! Spend some quality time letting us make our case, Madam Secretary!

03 October 2012

Leading Scientist Confirms C-123 Aircrew Agent Orange Exposure!

REGARDING: Major Wesley T. Carter (USAF)
(note: opinion responds to VA Denial of Agent Orange Benefits to Carter, 25 Sept 2012)

I have reviewed Jeanne Stellman’s letter as well as that of Thomas Sinks (ATSDR), the two letters I have in my possession that support a high probability of exposure to dioxin in C-123 aircraft. I have ‘absolutely’ no argument regarding the conclusions drawn by either Dr. Stellman or Dr. Sinks. I am in total agreement with their conclusions regarding the definite existence of a potential for TCDD exposure to flight crews in the decommissioned C-123 aircraft.

In the ‘denial’ letter from the US Department of Veterans Affairs (DVA), there is reference to two other letters of support issued by Drs. Berman and Goeppner ... these I have not seen. However, with regard to each of the letters of support submitted, apart from Dr. Sinks, the DVA states in their denial letter that because those individuals presenting letters of support are not ‘medical’ doctors, only ‘PH.Ds’., they are not qualified to make judgments regarding the drawing of conclusions between a Veteran’s exposure and his/her disabilities. I would argue that medical doctors are not scientists who are experienced in the scientific method and knowledgeable with respect to intricate study design, implementation, analyses, and data interpretation. Scientists spend considerably more time examining details of exposure potential/logistics, for example, than a medical doctor. The medical doctor examines the ‘end result’, the disability ... the manner in which the disability evolved, related to exposure logistics, in concert with exposure mechanisms inherent to the particular contaminant in question (e.g. cellular interaction of the contaminant), is not within the purview of a medical doctor’s training and/or experience.

In the denial letter, the DVA quotes highly supportive conclusions attributed to Drs. Stellman, Berman, and Goeppner. In each case, the scientific conclusions of ...exposure in decommissioned C-123 aircraft were analogous to that of in- country Viet Nam Veterans (Stellman) ... the veteran may have been exposed to excessive levels of dioxins (Berman) ... and that the denial of this claim was not scientifically accurate and credible (Goeppner), was rejected by the DVA on the basis of a lack of connection between exposure and disability (because these individuals were Ph.Ds.). This conclusion, from my perspective, is totally without warrant. These individuals, through their respective vast experiences, understand the ramifications of historical and operational exposures to dioxin and what may culminate from such exposures.

Also in the DVA denial letter, reference is made to the conclusions of Dr. Sinks, these being that information is insufficient to determine if the exposure levels to Veterans was low or high, or the actual risk of health complications due to this exposure ... and ... that precise measurement of contaminant concentration will not necessarily be predictive of negative health consequences). The DVA responded by stating that “... there is no conclusive evidence that TCDD exposure causes adverse health effects”. This statement I find blatantly disingenuous. The DVA employs the ‘presumptive exposure’ criteria in compensating US Viet Nam Veterans who had ‘boots on the ground’ in Viet Nam. In the instances where compensation is provided, given that the Veteran has fulfilled all necessary criteria, there is no “ ... evidence that TCDD exposure causes adverse health effects” ... only presumption of exposure for these Veterans, and the resulting health complication that may have ensued. 

As Dr. Sinks states, the concentration of dioxin does not necessarily translate to ‘no effect’ at a low dose, or an automatic ‘effect’ at a high dose. Mammalian organisms, including humans, may differ in their physiological responses to various levels of a contaminant. Different people may respond differently to specific contaminant levels with varying time frames, such that more time may be necessary before a health effect is expressed following exposure. Given that actual experimentation on humans has not been undertaken to scientifically document, over time, exposure and expression of health effects in a controlled experimental design/environment, only surrogate data are used to draw scientific conclusions. On this basis, latitude is normally given to such conclusions which inherently accommodate unavoidable scientific error.

The DVA concludes with a summation of Major Carter’s application by stating:
“The Veteran did not serve in Vietnam and has not served in any other area that would allow for presumption of Agent Orange exposure or direct occupational exposure to be accepted. Medical studies showed that it was unlikely the human body was able to absorb any dioxins from residual Agent Orange on aircraft surfaces, or that any exposure would lead to adverse health effects.”
 The rejection of presumptive Agent Orange exposure in the C-123 aircraft, I feel, is without warrant. As Dr. Sinks stated, there is a lack of specific data on the relative levels of exposure in the aircraft and that an actual prediction of health complication may not be possible even with precise data, this, of course, governed by the variability in physiological functions in those exposed. In the second statement reference is made by the DVA that it was ‘unlikely’ dioxins were absorbed by the Veterans or that exposure would culminate in health effects. Given that no direct studies on human contamination were done in a timely fashion over the course of C-123 use, and dioxins were, in fact, present in these aircraft, I find it inconceivable that credence is not given to the circumstance of sufficient exposure contributing to health repercussions as likely to as not. 

A US DVA document states “There is a low probability that TCDD penetrated through the skin of these aircrew.” (Scientific Review of AgentOrange in C-123 Aircraft). Low probability or not, there was some probability ... no directed studies were done to actually determine the ‘level of probability’ that did exist at the time of aircraft use. In addition, as Dr. Sinks indicated, even a precise measurement of dioxin may not enable a predictive scenario of negative health results. Given the many unanswered scientific questions regarding the mechanisms related to dioxin exposure and specific health consequences, and the lack of corroborating in-situ exposure data from actual aircraft while in use, it would seem most reasonable and logical to accept the ‘as likely as not’ phrase (related to whether or not exposure occurred) to ultimately provide suffering Veterans with compensation related to their service and, in my mind, unquestionable exposure.

Dr. Berman summed the situation up succinctly by stating “... it is my opinion that the personnel assigned to the C-123K Provider, particularly the most experienced crew, were more likely as not to have been exposed to excessive levels of dioxins.” The operative phrase is more likely as not to have been exposed. This summation is the crux of the matter and should be accepted by the DVA ... this in conjunction with the undetermined levels of dioxin that may have entered a given Veteran’s body from the environment of the C-123 aircraft, and the uncertainty of what specific levels of the contaminant would actually precipitate a given health consequence.

It is clear to me that the US DVA should re-assess their position on Major Carter’s application, and perhaps others who are in similar circumstances.
I attach here my CV for your files.

Yours sincerely,

Dr. Wayne Dwernychuk

     (October 3, 2012)
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