MDS, Agent Orange and the VA

[Whizbang]

simplyamom,

Did your husband develop any ailments due to AO?

I would say that it is definitely possible that AO had something to do with your son's developing MDS, but proving it may be harder to do...

If I were you I would be doing a lot of internet research...

I did come across an older gentleman at Sloan Kettering who was exposed to AO in 'nam and developed leukemia, at the VA Hospital, they kept telling him it was just anemia... He said it was a good thing he didn't listen to them for more that a year...

Good luck to you and your son, and God Bless...

Originally Posted by simplyamom

Does anyone out there have any information that would help me??!! Thank you.

[bailie]

Add me to the list of Vietnam veterans with MDS. I was in Vietnam in 1970-71. Our firebases were routinely sprayed with chemicals, but not Agent Orange. There may, or may not, be a connection, but it is interesting. We did work areas that were defoliated.

[mdhihwjv]

My husband who served in Vietnam in 1973 passed away in 2013 of MDS which turned into AML (leukemia). He was already getting partial disability from Type 2 diabetes, and he had applied for additional benefit after getting MDS. We never got any response before he died, but I was told that I could continue his application which I did. However, later when I phoned the VA about it, they did not seem to know anything about it and they told me to apply again. However, after reading these posts, I wonder if I would even be awarded the benefits after his death even if it was approved. Two oncologists in separate hospitals told us there was a link between Agent Orange and MDS/leukemia. Does anyone know if I should keep trying?

[bailie]

I think it would be a tough process. I can't imagine being able to make a good argument that this disease originated from Vietnam.

I'm sorry for your loss. What kind of treatment did your husband have? When was he diagnosed?

[Neil Cuadra]

mdhihwjv,

I'm sorry that you lost your husband. We can't thank him for his military service but we can still thank you.

I don't understand why vets with MDS and their spouses are sometimes approved for benefits, when many are not. It seems that you have to be extremely persistent and make a strong case with your own medical evidence, such as a statement from a doctor who believes there was a connection. In some cases the benefits get approved, often after years. Whether approval eventually comes or not, the long process seems to leave everyone extremely frustrated.

Whether it's worth all that effort is a personal choice. If you contact the AA&MDSIF and explain your situation, they may be able to offer you some advice about the process and the chances for success.

[sbk007]

I agree with Neil its a personal choice. Only you can decide if you want to spend the time to pursue it(its going to bring back sad memories). If it brings you some satisfaction and the benefits are substantial then you should pursue it but if you feel like you just want to go on with your life that's understandable too. I don't think its a lost cause. With the right ammunition (Doctors notes)you might get the benefit.

[Bob Macfarlane]

I keep getting messages asking if I am still willing to help; the latest just today. Here is my reply:

I am supposed to be dead but I am alive and well. VA gave me 29 months to live 10 years ago but only God knows my expiration date.

I will be happy to send you what I have, if you will send me an address to mail a CD to. The information is much to large to be emailed. When you receive the CD please feel free to call me at 954-232-7190.

Have you been before the Board of Veterans' Appeals? If not you are entitled to a hearing there. If the BVA should deny you then you have the right to go before the Court of Appeals for Veterans Claims in DC.

I am one of the 31 'Nam vets that has been successful in getting a decision before the BVA in my favor. There is hope if you don't give up.

HgB 10.1, HCT 30.8, RBC 2.7 (RCMD RS) but still climbing trees in Georgia to havest deer and wild hogs. I have been blessed!

[barbara a]

It has been a long time serious family emergencies and hopefully I am back in the loop
Again I have appealed a denial from the VA my claim is up for a review or pre review before it MAY hit the Board- I am committed to continue the battle I enjoy a good fight especially when it is for a good cause and for great people.

I have been doing research via the net searching for each and every case that has been won on behalf of MDS claimants vs the VA. I have gained the support of my state's Senator to 'monitor' the status and activity. Also, she has assigned a contact person at her office who has offered assistance in finding links and connections I could not plus other possible supporters in DC. It is endless effort....I have just received a notice from the VA office that 'due to heavy backlog it will be a long time before the Department will review my claim"...hopefully I will live a healthy sane long life!

Whatever I learn I will share I encourage each of you who are fighting or thinking about taking up the gauntlet with the VA to do so: if 1 flea bites a dog the dog doesn't mind or pay attention, if the dog becomes flea infested he scratches and is miserable and forces someone to take notice to end the annoyance"....that's my story and I'm sticking to it!
if interested try to check this out and read thru: Citation Nr: 0812788

Decision Date: 04/17/2008 Docket: 3-11 902a Seattle Washington

or the Veterans Law Group on the net and read the different appeals summaries interesting...
god
speed

[bailie]

I am just curious how one would prove the connection? I am the only one from my company and battalion that I know has MDS. We have put the word out to the others who were there with me and I am the only one with MDS even though we were all exposed (or not) to Agent Orange.

[Bob Macfarlane]

Attached is every decision on MDS/AML related to Agent Orange that has gone before the Board of Veterans Appeals. They go from 1992 thru the end of 2013. There are only 111 decisions from the thousands of cases of MDS/AML being treated by the VA amongst Vietnam "Era" veterans. As of 2010, there were 2,857 Vietnam era veterans with Hodgkin’s Lymphoma that had been or were being by the VA and 14% had died. There were 4,031 with MDS/AML and 40% had died.*

That is most likely why the regions (at the direction(?) of the VA in Washington) have stonewalled my FOIA requests for information on decisions rendered at the regional level.

If you go through each one that was approved it will give you a good idea of what you need to present. That isn't the end of it though. In my personal case, my claim (http://www4.va.gov/vetapp09/files4/0930914.txt) was approved by the BVA in DC and returned to Saint Petersburg to be rated. Saint Petersburg opined that while MDS/AML was cancer, in my case the cancer wasn't malignant - - - zero percent disabling.

HgB 10.1, HCT 30.8, RBC 2.7 (RCMD RS) but still climbing trees in Georgia to havest deer and wild hogs. I have been blessed!

*FOIA request 10-10709-F (Veterans' Affairs own numbers)

[barbara a]

Bob I would SO APPRECIATE any cd you are willing to send me with all the work you have done gathering statistics, etc. I have tried to find the info you quoted and have been unable to that would be such a tremendous help
no one advised me I had to show my husband became 100% totally permanently disabled from MDS which he did for 3+ years before he died- I will get that info from SS and submit
I have found studies as late as 2008 that have commented that the SEERS reports the VA have been using are not relevant and that the only studies scientifically relating MDS to dioxins are in the occupational studies in American not thru the fed government or ward offices interesting...
I slowly plug along gathering presenting arguing comparing when my husband was diagnosed he was 43 years old, he began with Aplastic Anemia as MDS was far from common, it was not considered a cancer nor coded as such and usual cancer treatments were not used everything was in clinical trial stage transplants were not common much has changed since 1992.
Veterans' medical were not covered if a combined income was over a certain amount and the cost of his care was very expensive insurances didn't want to treat it differently than having "tired blood" registries didn't claim it specifically until 2000 or so
I am telling you nothing- any and all help you may provide is wonderful I will send you my mailing address if we can do it 'privately' for you to send a cd-
thanks Barbara a

[barbara a]

ok just saw attachment and downloaded THANK YOU!!!
keep doing and living God Speed- barbara

[barbara a]

Bob each claimant appears to be deceased do you know if they died before or after the decisions were made?
where did you get your data from? Is all this public knowledge from the VA or thru your efforts?
Did your case settle in your favor or no due to no permanent disability?

Crazy this is all crazy..Barbara a

[Bob Macfarlane]

Barbara, the "Dead" indicates they had passed away prior to the decision being made.

If you or anyone else, would like the CD, email me a mailing address to AirAmrka@aol.com.

As to where that information came from? That is directly out of the VA's own data found at:

http://www.index.va.gov/search/va/bva.html

[newfintexas]

Hi...it's been awhile since I was on here, a lot has gone on. My hubby had his BMT in Nov, was doing great but relapsed in Aug with the mds becoming aml and has been going through the chemo, transfusions etc ever since along with DLI. So far he seems to be maintaining but we haven't seen much if any improvement. Why I am answering this thread - I'm wondering if any others are out there with the same history as we have.

My husband while not in Vietnam - was stationed in different places during his 20+yrs in the air force. One he remembers vividly was when he was stationed in what he called a bomb dump - they would go in the silos and open the stored bombs to check for old, no longer useful if past safe date etc..this was back in the early 70s, there was no such thing as protective gear and he said a lot of times when you opened up the old bomb storage boxes a fine dust like stuff would float out and just fall on the men and cover them. He has no idea the chemicals that were in all the bombs but they were all strong and dangerous he is sure.

We have never approached the VA and I wonder if we should? Thanks for any knowledge you may have on this sort of situation. Laura

[barbara a]

Bob thanks for the offer I will take you up on the disc
Bailie how does one demonstrate the connection between AO and AA/MDS that is a very tough job I have discovered that the only "scientific" research done has been thru the occupational field research and only animals have been 'tested' the hypothesis is if animals die humans will too- the VA doesn't accepet this research as enough or appropriate I have spent 3 years attempting to find acceptable scientific data- not even proof- of the connection via the internet I have not found adequate data to date according to the VA so I have decided to research and positively argue the point that there is NO connection between AA/MDS and exposure to AO this then would support the VA's stand so far I cannot find data that supports the no connection THEREFORE as the law requires when there is a 'he said-she said" case the benefit of the doubt lies with the Veteran so that is my task at hand I am investigation the possibility of medical students, doctors helping me in gathering research and writing this argument
To everyone who has MDS/ every spousal survivor and supporter of the fight for Veteran's benefits for SS/MDS please send me your doctors' letters or any supportive data you have stating the connection- doctors' support of the connection is an important 'proof' to have when a claim is presented to the Board- I have it for my husband's claim and if I am able to provide the same for other Vets all the more power !!!
Presenting a claim for AA/MDS seems to be a futile task and it is not impossible to receive benefits my question to the VA is if it is accepted in on state by one VA board that there is a connection why is it not a universal decision? money I am sure is the answer...and I get that and I don't care. My senator received a letter from the VA stating that it would be a very long time until they got to my case as the department is backlogged she wrote back " not her problem" my problem is learning how to communicate with the VA so it is a win-win for every one
Again I am asking for universal support"\: please send me your data, medical proof, suggestions and anyone who would like to do some internet research with me let me know and I will forward an outline of what I am seeking. my direct email is" bcwhacker2@yahoo.com My efforts are for not only my husband but for every Vet and his/her family to receive justice from the VA. Thanks everyone.

[bailie]

Barbara,

I really appreciate your efforts. I just don't know how I could differentiate the effects of AO from the many other possibilities which might contribute to MDS/AML. There are no others from my unit who have been diagnosed with MDS/AML even though our exposure would be similar/identical. My doctors have not indicated any significance of my possible exposure to AO.

[Bob Macfarlane]

Send me your mailing address and I'll send you a copy of the CD. There is a wealth of evidence that dioxin causes MDS and irrefutable evidence that benzene (also in AO) is a direct cause of MDS.

[bailie]

There is no doubt in my mind that AO could have an effect in triggering MDS/AML. I guess my concern is how it is possible to blame AO as "the" cause of MDS/AML and not all of the other environmental influences in a person's life that might easily be more instrumental than the possible exposure to AO?

[Bob Macfarlane]

I happen to be one of those 32 that have gone before the BVA and had them say that "Yes, your MDS was caused by exposure to AO.

There were a number of the finest MDS doctors in the world that in 2010 were willing to tell the Institute of Medicine that AO causes MDS. They belong to a well-known foundation and were shut down by the Board of Directors of that foundation for fear of retribution from the government.

I testified in 2010 before the IOM in Chicago and presented 1,000's of pages of documentation to them and the outcome was basically a single paragraph that said "NO!"


Many of us worked long and hard with that foundation, which will remain unnamed, only to be betrayed at the last minute. In fact, I arrived in Chicago the day before the IOM conference only then to find out they were not going to present the document which I had helped write and edit.

[barbara a]

Bob- do you still have your paper? Have you sent it to any other organization, political persons or VA officials?

Work like that cannot go to waste, efforts like that cannot go to waste. I have recommended to my local Senator to read the forum conversations and ask her constituents to do the same- I'm smiling at my wishful thinking.

No matter how many emails or calls I make to the VA commission I cannot get any rep to contact me and the second in command is from my own state!

I have just left a voice message on your phone leaving my address and phone number, if you have the inclination and time I would like to speak with you. The disc will be great data for me also. thanks

[barbara a]

Hey everyone I have been doing research daily gathering data to demonstrate that I CANNOT show there is no research in limitingly connecting dioxins/benzene/AO to MDS in my reading I came across the following site which you can go to archived publications and updates and read the progressive 'announcements' and reasoning why illnesses have been added to AO list
in the July 2003 report it states that the Institute of Medicine has 4 categories to 'move and or consider and illness- MDS is in category 3- it it not mentioned per se but Leukemia is so
I now realize we must demonstrate and or obtain 2 items to move MDS up the ladder: there must be 1 quality health study which suggests an association between AO and MDS AND there must be scientific proof or study(s) demonstrating or suggesting at least a limited suggestion of association.

SO WHO CAN HELP ME HERE? Anyone know a chemist that will research any data to show association of dioxins/benezene and blood cancers? Anyone know any medical groups, schools, hospitals, doctors who have a quality study or research showing suggested association? That is what we need to hunt down.

here's the web address: http://www.publichealth.va.gov/expos...ns/newsletters
Im doing a slow burn to keep my enthusiasm and tenacity going anyone want to help with researching specific things?

[barbara a]

I need more of a rah-rah support going here to keep up my momentum
thanks!

[sbk007]

Benzene, and similar chemicals and exposure to radiation are the only 2 strong links they have to MDS. Its well documented. There are loose links to others but nothing conclusive as it is with benzene. Some Patients get it as a result of chemo for other cancers but that isn't relevant to what you're looking for. I would think that any MDS specialist would support that exposure to benzene would cause MDS.

[barbara a]

I am smiling both professionals, groups and individuals say "reports have shown; there are studies that support the ties between Benzene, Dioxins to MDS" however, no one can steer me as to what studies or how I find them??SO IF YOU KNOW OF LINKS, GROUPS, PROFESSIONALS PLEASE SEND ME THE LINKS

We must show: suggestive material/data that there is a link
Have ONE study from a quality health professional group or organization supporting the suggestive link.

It sounds so easy and yet so hard. Let's keep this fight alive, there are too many Veterans who have either died or are suffering with AA/MDS to let it go.

Thanks-barb

IDEA: FLOOD your political representatives at all levels with letters asking for their support in our endeavors. There will be elections soon -let's be proactive and set the stage.