MDS, Agent Orange and the VA

[triumphe64]

My friend gets AO disability for his Type 2 diabetes. Maybe just a good lobby is all that's needed.

[barbara a]

hey can you please send me the well documented links or sites that I may view and read the data you are speaking about? that would be a great help thanks

[Bob Macfarlane]

Myeloid Malignancies
John Howard, M.D.
Administrator, World Trade Center Health Program

February 1, 2014

Executive Summary

Beginning on February 1, 2014, the World Trade Center (WTC) Health Program will consider blood or bone marrow disorders of the myeloid line to be slow-growing blood cancers. Accordingly, they will be considered WTC-related health conditions, making them available for WTC Health Program medical treatment services for eligible members. These cancers had been considered non-malignant by the Administrator because they were referred to as “pre-leukemic” hematopoietic disorders in the medical literature. Recent scientific advances, however, characterize these “pre-leukemic” myeloid neoplasms as slow-growing blood cancers, and authoritative scientific sources now consider them to be malignant myeloid neoplasms.

After receiving a request from the WTC Clinical Centers of Excellence to review certain myeloid disorders in terms of their status as malignancies,1 the WTC Health Program has determined that, in addition to types of leukemias, these myeloid malignancies are eligible for coverage by the WTC Health Program as WTC-related health conditions.2 The group of myeloid malignancies includes the following health conditions:

(1) Myelodysplastic Syndromes (MDSs);
(2) Myeloproliferative neoplasms (MPNs);
(3) Myelodysplastic/myeloproliferative neoplasms (MDS/MPN); and
(4) Myeloid malignancies associated with eosinophilia and abnormalities of growth factor receptors derived from platelets or fibroblasts.3

Full article at:

http://www.cdc.gov/wtc/pdfs/WTCHP_PP...s_02012014.pdf

[Bob Macfarlane]

http://www.law.yale.edu/documents/pd...n_redacted.pdf

This is why, out of the thousands of Vietnam veterans (FOIA from DC) with myelodysplastic syndrome / acute myeloid leukemia, there have been only a handful of BVA decisions. Favorable decisions are being granted at the regions prior to them getting to the BVA. I personally know of two that were granted 100% at the region. In one case, he and I had the same doctor and basically the same nexus letter. 100% for him and denial for me.

You can also bet that this is why, when I wrote to the FOIA officer at each region requesting just this exact data, I was stonewalled. I've asked time after time that any of you that knows someone that was granted compensation for MDS/AML at the region, that you have them contact me.

Denying you are the region and requiring that you fight though a Notice of Disagreement until you get to the BVA is not a bit different than the regions "wait listing" veterans for healthcare. It is all part of the "Delay, Lie to Deny and Hope YOU Die." BVA wait, if you are lucky, is just slightly under four years.

The Aplastic Anemia/MDS International Foundation and the MDS Foundation surely know 'Nam vets and their widows that were granted at the region but Vietnam veterans and MDS/AML is not the cause de jour. They sure could not do enough for Robin Roberts though. Now, they could, at least, email their contacts and ask if they know any veterans that were granted compensation without being denied and having to go through the years of the NOD process.

Oh well, nothing to do but continue to soldier on in hopes that someday Veterans Affairs will do the moral thing. A friend told me once that there would come a time when I felt like Don Quixote of La Mancha. Actually, I feel more like I am dealing with a bunch of Don Knotts' in the VA administration.

I am 100% P&T with 0% for MDS with a BVA decision that it was caused by AO - - - So you see I have nothing to gain except being able to help others fight the VA.

[barbara a]

It has been a long time since I was on forum....I continue to research and gather data to fight the battle I am discouraged and continue sometimes very slowly...I have finally found 2 studies re benzene and MDS/AA now I have to continue for Dioxin studies then I can submit them with a letter of inquiry to brind AA/MDS up to level 2 on the "presumptive illness" list. Unfortunately there are approx. 3000 AA/MDS cases registered on VA cancer registry and not 10000 total patients die from this disease a year in the USA....stokes, diabetes AML have more deaths so they win for recognition of dollars. additionally, with the current trouble the VA is in re patients dying in wait I am sure my info/case will be lost and....I will continue. Elections don't help me either...I fight the fight for those who can't or won't for the Vets and their families...hope you are well- how was hunting?,

[Bob Macfarlane]

"Further epidemiologic evidence derives from a 1976 industrial accident in Seveso, Italy, in which several thousand residents were exposed to TCDD. Studies of this population have revealed a probable relationship between TCDD exposure and an increased risk of acute myeloid leukemia. Because acute myeloid leukemia (AML) may arise from previously unrecognized antecedent MDS, this finding suggests the possibility that a portion of the increased risk of AML in the residents of Seveso may be due to TCDD-mediated MDS.

Pesticides and Cancer
www.jstor.org/stable/3552701
by J Dich - 1997 - Cited by 207 - Related articles
Bertazzi A. Cancer in a young population in a dioxin-con- taminated area. IntJ Epidemiol 1993; 22: 1010-3. 121. Pesatori AC, Sontag JM, Lubin JH, ...

[barbara a]

You are amazing!!! I am looking it up now- thanks Bob I see you are still at it too. AA MDS foundation has commented that they are going to present data to VA...not what, who, or when-have you heard anything?

[barbara a]

having some difficulty loging on will go to library and see if they have access
thanks

[barbara a]

I would much appreciate to know if anyone other than Bob MacFarlane and me are doing research onthe connection between Agent Orange compound and these illness? We. Need all the info and support wecan get to continue the fight for recognition and positive decions. All vets will benefit from our efforts SO please help

Thank you.
Barbara a

[Neil Cuadra]

Barbara,

You probably already know this, but physicians many of us know have studied the connection and written about it.

Dr. Mikkael Sekeres, May 2011

Dr. David Steensma, October 2012

[barbara a]

Just a note of hello! One woman I was working with has hired an atty to represent her (widowed) presenting her case to the VA. She keeps in touch with the AA/MDS foundation and will update me on anything they have done-
I have heard nothing from anyone I have been told I have at least a 5 year wait- how disgusting is that?! The VA needs a complete make over- if the IRS and Social security can handle computerizing their claimants so should the VA takes devoted effort and overtime...
I am searching out international health and scientific orgs but no one answers I am so amazed at that....Also, there are some reference journals, reports I cannot gain access to....hear me grunt...

How are you doing?

[Bob Macfarlane]

How do I get notice of these meetings?

http://www.ncbi.nlm.nih.gov/books/NBK195095/



The meeting reported that “Ocular melanoma” is being studied because “A Vietnam veteran who had choroidal melanoma submitted information received from VA after a Freedom of Information Act (FOIA) request. The data are not adequately explained and labeled, but they suggest that the condition is being treated in VA facilities far more often than expected on the basis of national incidence rates.”



The veteran who spoke on behalf of MDS spoke only of Agent Orange being thinned by diesel and jet fuel to be sprayed and the committee opined that the benzene in the fuel would dissipate before hitting the surface. No science, no facts, nothing other than the committee’s opinion. Not even a mention of AO itself containing a molecule of benzene. Ranch Hand missions were flown at 140 knots and a height of 50 meters or just above the tree tops. Meaning they had a rapid settling velocity. I feel certain that this was not presented and the committee did not know or care about factual information.

http://www.dnrec.delaware.gov/dwhs/S...0Orange001.pdf



I could have presented them with well explained and labeled information from my 2010 FOIA request which leaves no doubt the Vietnam Era veterans are 14,000% more likely than the general population to have MDS - - - one might conclude that is “far more often than expected on the basis of national incidence rates.” With the national incidence of MDS at 4.5 in 100,000 and ‘Nam ERA vets (according to the VA’s own data) were in 2010 at a rate of 768 in 100,000 is certainly “far more often”. This was ALL presented by CD to the committee in the 2010 Chicago meeting of the committee and would have been spoken verbally except you can hardly present 1,000 pages of facts in the VERY limited time allotted to each witness.



Also on the CD was the argument that given the rarity of MDS v multiple myeloma (a presumptive disease for VA purposes), that MDS occurs with more frequency than MM. Argument based again upon FOIA data from the VA.



There were 6,549 cases of AML/MDS identified as being treated at the VA and 9,100 cases of MM identified as such. Since MM is 160% more likely that AML/MDS to occur in the general population, it is reasonable to conclude that there should be 14,560 cases of MM and not 0,100. Since the IOM argues based upon comparison of the diseases amongst ‘Nam vet vs general population, hands down AML/MDS should have been presumptive long before MM based "on the basis of national incidence rates.”



(MDS 4.5 per 100,000 in males vs. 2.7 per 100,000 in females)

Blood (ASH Annual Meeting Abstracts) 2006 108: Abstract 247
© 2006 American Society of Hematology

(Multiple Myeloma 7.2 per 100,000 in males vs 4.9 per 100,000 in females)

National Cancer Institute

http://seer.cancer.gov/statfacts/html/mulmy.html



Footnote: I certainly doubt that anyone on the committee ever even looked at the CD.

[barbara a]

It's been awhile- I gave myself a break as I was getting down and out AND I am going back to the efforts Is it ok with you if I send your CD to my State Senator who is assisting my efforts, Kay Hagen? And to another VA assistant in DC who is going to review the facts as I present them?

I had reply from Dr. Young, a VA facility doctor, stating he felt it was a 'conflict of interest" if he offered me any assistance, the Sen advised me there is no conflict, ask him again- I intend to. No response from anyone else especially on the international front..I guess there are more current things the VA has to worry about...

Be well I hope you are feeling good.
barbara

[Bob Macfarlane]

You and anyone else may share any and all information that you get from me. If you want to send it to your state senator, it would probably save a great deal of time if you also share my telephone number with them. My number is 954-232-7190. Anyone wanting to talk may feel free to call.

I will share what my VA doctor told me because she is now retired. My doctor, Lucy Chua, at the Miami VA Hospital told me, with my wife in the room, that she KNEW that AML/MDS is caused by Agent Orange but if she put that in writing the VA would terminate her.

Do not expect to get any help from a doctor on the VA payroll - - - in fact the VA will find a doctor that will LIE to deny your claim. We have even had foundations that promised support backout at the last minute. I believe exactly why they backed out was because of Federal government funding at the universities and centers where their board of directors are employed.

Afraid if they told the truth the government would punish them by withholding funding? As it was put to me, they were concerned about the "liability."

Barbara A are you on my email list? If not and you would like to be, email me at AirAmrka@aol.com with the request.

[bailie]

I think the problem is, how does a person prove that AO was the cause of a person's MDS when there are so many possibilities? I was in Vietnam but to prove that was the cause of my MDS would be impossible or even remotely possible.

AO (along with hundreds of other products/exposures) probably could cause MDS, but connecting a specific individual with AO is a long shot at best unless there were direct exposure. I can understand the difficulty involved with this association.

[Bob Macfarlane]

I proved it to the satisfaction of the Board of Veterans Appeals for myself and have supplied information to others that have used that data to prove it.

Service connection for the cause of the Veteran's death is warranted. 38 U.S.C.A. §§ 1110, 1154, 1310, 5107 (West 2002 & Supp. 2013); 38 C.F.R. §§ 3.5, 3.102, 3.303, 3.307, 3.309, 3.312 (2013).
http://www.index.va.gov/search/va/vi...s2/1418703.txt

I'll tell you sir, as I've told so many others, you give up and you'll never prove it. It is not a slam dunk and is a fight but as soon as you give up they win. It may take years.

[barbara a]

I am with you Bob....to prove that smoking causes lung cancer in everyone who has lung cancer is also 'impossible" there is an association in smoking and lung cancer; a possibility that smoking caused the lung cancer based upon related data...that is the type of association the VA and other medical org uses to identify association of possibilities the "presumptive" illness list is based up association and data of numbers soooooo, to fight the battle the association must be presented per case, the benefit of the doubt lies with the veteran- AND he or she is at the mercy of the local decision-making representatives AND the federal level representatives -they do not necessarily agree with or support each other- it's like having a good or bad hair day, it's a crap shoot.
Having said all that, Vietnam vets fought hard for various benefits, medical reviews and 'new diagnosis' recognized for treatment- today's Veterans benefit from their efforts we are only trying to continue the efforts to get things recognized it is a thankless, frustrating, effort
Bob I thought I was on your email list but only hear from you via this site..? Where are you and how are you doing?

[julielucas]

Thanks for all the excellent info re: MDS and Agent Orange. My husband is a Vietnam vet, Phu Cat AB in 69-70. He was dx with CLL (VA presumptive) in 2007 and did a round of chemo. He never applied for disability benefits due to exspouse support rules- blah blah. Now he's been dx with Secondary MDS, which his oncologist says is most likely due to his previous chemo, and will probably need to retire. He is applying for VA disability. I wonder if we should even bring up his MDS? It's not like he was cured of the CLL, just in remission.
Has anyone gone through the VA and listed MDS as a secondary condition, and what if any were the results?

[Bob Macfarlane]

Primary disease is CLL and it is a presumptive disease to exposure to Agent Orange. Someone is blowing smoke up your skirt ma'am.

[Bob Macfarlane]

My God in Heaven!

Just hung up with Lynn from the office of Kerrie Witty, Director of Veterans Benefits, Saint Petersburg VA Regional Office.

In June of 2013, the RO sent me the request for "Statement of Case" and Form 9 to the WRONG address!!!!!!!!!!!!!!! Typo they say.

Their mistake and they canceled the claim of nine years on August 31, 2013, with no questions asked.

How many more like this O' Lord, how many more?

Had I not gotten eBenefits up and running and just accepted the VSO's telling me "at least two more years" earlier this year, what might have happened? eBenefits saved my butt on this but how many veterans or our widows know about it or have a Masters' in Information Technology?

No apology from Saint Petersburg - - - just "BE SURE TO SEND OUR REQUEST BACK IN 60 DAYS."

How much more would it cost the VA to send the forms out "Return receipt requested?" Frankly, who cares how much more it would cost.

Now I wonder if they are going to ignore me when I request that they speed up the BVA process in this case or will it be another four year wait?

In fact, how about an emergency hearing in about a month? And, I am coming to DC.

Bob Macfarlane
23-143-111
954-232-7190

[julielucas]

Originally Posted by Bob Macfarlane

Primary disease is CLL and it is a presumptive disease to exposure to Agent Orange. Someone is blowing smoke up your skirt ma'am.

Yes, Bob, CLL is the primary disease and my husband will most likely get 100% P&T. My question is if anyone has listed MDS as a secondary disease w/ the VA. No one is blowing smoke up my skirt. If anyone has any experience like ours, I would appreciate any advice.

[Bob Macfarlane]

Julie, I wasn't trying to insult you and surely the MDS as an outcome of your husbands chemo is much more likely than not. I have been in the battle for many years focusing on MDS / AML and Vietnam veterans.

I have seen a number of BVA cases that were filed claiming MDS as secondary to treatment for other cancers - - - none that I have seen settle on behalf of the veteran. The VA will march their ex(spirts) through the room all day long saying Chemo ==> MDS and that it is not VA's fault. Without the chemo your husband would have died.

That does not mean I might not have missed a successful case.

No one will deny you a right to file but you have a slamdunk with CLL and I am not sure I would muddy the waters. If you read my immediately above, they will do darn near anything to deny you.

[julielucas]

No hurt feelings here, Bob. We will use his CLL for his primary disability, thanks. BTW, my VSO pulled up a DBQ in his office and MDS was listed as one of the diseases. I have no idea what that means, but it was not listed on the DBQ I downloaded. His form was a 2012 version. Wonder if that means the VA is considering adding MDS??

[barbara a]

what is ebenefits? I have been advised thru my state senator that the va assumes it will be ANOTHER 3-4 months before my case reaches the top of the pile- that would make it just over a year for the latest delays I began in 2000.....Bob good to hear your fight is still there- I have spoken with John Huber of AA&MDS INTERNATIONAL and he has advised that his org is self funding a study of MDS, VIETNAM VETS AND AO it should be off the ground by next year late his org has no new info the doc working with them is steve s-9-=-=-, forget his last name
Julie what is DBQ or whatever initials you used? chemo is listed as a cause for MDS therefore the VA will turn you down on behalf of any claim stating that correlation; tRUST me if you don't have to fight that battle don't take it on- congratulations if you win your case based on CLL!!

I continue to research have added TCDD to my list for possibilities looking into international studies- mostly studies are interested in the treatment not the causes...with our new undeclared war the govt and VA ARE NOT INTERESTED IN 'OLD NEWS' so we just have to continue the fight-
bOB AM I LISTED ON YOUR EMAIL? aRE YOU IN fLA OR Georgia? How are you feeling?

[julielucas]

http://vets.yuku.com/directory

Barbara, ebenefits is a website through the VA where you can file online. You can get all kinds of forms there. A DBQ is a Disability Bekfcnefits Questionaire that a doctor can fill out. I had printer up a DBQ at home. Then the Veterans Service Org rep downloaded one for me that had MDS listed. Are you using a VSO or other VA org to help you with your claim? Here's a link to a Veterans forum. These guys are an excellent source of info.