MDS, Agent Orange and the VA

[barbara a]

I have a question - what is VETERANS CLAIM ASSISTANCE ACT of 2000?
does this mean that the VA must assist a claimant with proving their claim or getting information to help a claimant substantiate their claim???

It's unclear to me-thanks.

Doing well still "at it" slowly gathering info and I have put it together in a summary that is simple and clear

I have read several regional court cases which ruled in favor of the Veteran or his surviving family I do not know if a Federal appeals court can reverse the decision? Is there a referral source where all the state/regional cases are listed by outcomes, years settled, and/or the claimants illness? I have been unable to find the data.
I hope you are feeling well, are you in Georgia or Florida?

How's you blood doing?

barbara

[blueann71]

I just found out today my father has been diagnosed with MDS..He served in the Vietnam era..how can I help..

[bailie]

Tell him "thank you for his service" from all of us. I also served in Vietnam.

1) Check on insurance to see where he stands for coverage.

2) Keep track of all of his blood tests and bone marrow biopsies from the very beginning. Numbers will take on a new meaning for him so keep the numbers well organized.

This forum can offer a great amount of help and his numbers will be important in offering any advice.

We wish him the best.

[Data]

Originally Posted by blueann71

I just found out today my father has been diagnosed with MDS..He served in the Vietnam era..how can I help..

Sorry to hear that your father has MDS but you are searching in the right spot. I am kind of in his shoes. I was in Vietnam also and was diagnosed and treated for prostate cancer. The treatment for prostate cancer was high dose rate brachytherapy. I am trying to get the docs to classify my MDS as secondary to radiation, i.e., treatment for prostate cancer. I haven't seceded yet but I haven't given up.

Best of luck to your dad and please pass on my thanks for his service.

Data

[barbara a]

It is so difficult to fight the fight for yourself and it is worth your efforts as long as you can...this is my 4th year... With the change in local politicians i feel like I am starting all over again.
I am a widow of a Vietnam vet who died from MDS in 203 at the ripe old age of 53; he had been diagnosed 8 years prior.
There are no studies -internationally- that have or are investigating the cause of MDS as it relates to chemicals, environment, herbicides. rightfully, the dollars are being spent on cures, meds, treatments. That doesn't help trying to get the Federal Board to see a need to spend tax dollars on the cause studies...without those the fed vets "just say no". Regional courts have ruled in favor of MDS claimants AND that does not mean the suit was settled in favor...it is law that the Fed court systems' decisions may override regional decisions . Many cases are settled after the claimants' death.

MDS does not effect a high enough % of the population to demand big research dollars, so what do we do? Nag, present claims, demand data and present a good fight....maybe someday.
I thank every Vet for serving our country in addition to warfare our servicemen of Vietnam were provided an unsafe workplace due to the chemicals of Operation Ranch Hand at a minimum and they did their job.

[barbara a]

How are you?? Happy New Year Sir!

[Bob Macfarlane]

I have gotten a few emails recently asking if I am still willing to help. Of course I am.

Getting ready for my second BVA hearing on March 10. Going to the BVA in an attempt to get them to agree that MDS should be compensated as leukemia and not anemia. There are some of the biggest names in MDS and leukemia standing behind me.

I will share the letters and joint signature statement that I'll be using after the hearing.

[barbara a]

Not 5 min ago I wrote a friend and said "they have worn me down" and then I open your post...
A new political party won the senate in NC and in Dec my "permission slip" and request for his support and intervention was sent to his office; this am his rep said they never recevd it. Also, the rep advised me that I must chose one political office to seek help from or the "entire process will be slowed down", I told her I didn't think it could get any slower it would then just stop!. I have to resubmit my papers....I was so frustrated!!!! When I added that David died to a cancer not on the 'list' she doubted anything could be done......I saw RED.

Good luck on the 10th!!! you are a great man Bob! If anyone could get an act of Congress to review the MDS cause it is you.

AA/MDS org is offering a grant for a study involving anything impt to do with MDS You must be under 40 to apply...?... Honestly who will investigate the causes (AO) when there will be no future money in the results but would be for a cure?? Personally, I think if the VA can hold out another 10-16 years all the Vets and familes will be old, dying, dead or just won't file for benefits and that will be that.....I hate being so pessimistic about our American elected government.

Let me know how things go
barbara

[SASSI07855]

To Bob McFarlane and all the others fighting the battle on MDS as related to Agent Orange exposure I commend your efforts. This is my first post here. I came across this web forum yesterday (Friday February 20th).

I was diagnosed with MDS in the fall of 2014. I went through four months of chemo shots. I had a bone marrow biopsy on February 5, 2015, and was told by my Oncologist on February 18th that I now had zero blasts, and would be placed in an ongoing maintenance program.

I am currently rated at 90 VA disabled, as of August 2014, with 60 percent of that as a result of Agent Orange exposure while in Vietnam in 1969 and 1970. I have fought the battle with the VA since what seems like forever. I have a number of appeals still pending, going back to 2010.

Since I already have proof of Agent Orange exposure, I will be submitting a new claim next week regarding the MDS situation. I am prepared to join the fight along with the rest of you.

Bob or anyone else involved who might have suggestions on how to best approach the VA on this my email address is williamhaas@comsouth.net. i look forward to being a part of your efforts.

[bailie]

What is the nature of your MDS? What are yours CBCs like? Do you have any other assistance than the VA? Insurance?

[rar]

I saw a VA oncologist when I had MDS RAEB II. She looked at my papers and asked what I was interested in. I told her a SCT was the only cure. Her response was the waiting list for transplants was so long that I would be dead before my number came up. I had the transplant through Medicare.

The visit never showed up on my medical summary on ebenifits.

Ray

[bailie]

I still have great reservations about pinning this on Agent Orange in Vietnam unless there was direct exposure. I was in the jungles (infantry) the entire time I was there. Since Vietnam, I have been exposed to so many other chemicals/exhaust/second hand smoke/spraying lawn/spraying trees etc., that I would feel very reserved about blaming this on my service in Vietnam. No one else in my unit has had MDS and I have surveyed the unit well. I served my country at that time for better or for worse. I wouldn't expect any employer I have had since Vietnam to be monetarily responsible for the rest of my life for health problems that may not be directly attributed to the employment. I know too many veterans that have worked the system for every penny they can get. It takes money from those who have been "broken" in their military service. That is my opinion. I thank everyone for their military service.

[barbara a]

Glad u have jojned the forum..welcome. We all share and most of us support each others efforts claiming against the VA is an exhausting endeavor. Each of us must present our case independently as best we can. THEN pool together our findings for promoting a comon goal
I have sent you an email if u wish to chat reply
Barbara

[barbara a]

For those who haven't worked the system i pursue my claim, research and continually question and make requests on the VA
Your personal evaluations are duly noted and for myself who is "fighting" for benefits. I find you comments negative disheartening and non supportive. Maybe your sharing would be better on a non AO forum board

[bailie]

Barbara, thank you for your opinion.

[SASSI07855]

Barbara i responded to you by personal email. I am waiting to hear back from you. Did you get my email?

[SASSI07855]

Bob Macfarlane I sent you a personal email. Still waiting for further info on the 31 individuals who have gotten MDS accepted as an Agent Orange item. If they succeeded then their efforts may in some ways help the rest of us to also be persuasive enough to the VA to get our cases accepted too. i am ready to fight, and if others who have the same issues do likewise together we may succeed.

To those who do not believe in fighting for your rights through the VA system...please just butt out if you have no positive feedback. It is hard enough just fighting the VA system.

[rar]

Originally Posted by barbara a

Glad u have jojned the forum..welcome. We all share and most of us support each others efforts claiming against the VA is an exhausting endeavor. Each of us must present our case independently as best we can. THEN pool together our findings for promoting a comon goal
I have sent you an email if u wish to chat reply
Barbara

I feel your pain. I have been going around with the VA for 4 years now. I have had two C&P exams that differ marked with many exams that I have had with medical experts. I go for a 3rd C&P next Tuesday. Wish me luck. Of the many veterans I know none have gamed the system and some got less than t5hey deserved. I know there are cheats. I have not seen them.

Ray

[Cheryl C]

Ray - Are you still doing OK? Haven't seen you post for a while.

[rar]

Executive summary. I had SCT 1 Jul 14. Minor side effects. I got sick Oct 2014 and spent 2 months flat on my back unable to eat or move. I had C.Diff, CMV, and GVHD stage 4. I lost 40 pounds. The finally discharged me on IV feeding. I was so weak that I was wheeled out of the hospital. They though I was going to die, but I fooled them. After a month of home recovery I was taken off IV and started eating again. Through regular exercise I have put back almost 30 pounds and can walk 3 miles. My latest visit to the oncologist was encouraging. He said I was most likely cured of the MDS. I can go bike riding, snow shoveling, swimming, exercising at the health club, etc. I will always have low RBC and platelets that should not be a problem. I am down to 8 medications and should be able to be off them in a month or so. So aside from one bump in the road I think I am doing good.

Thanks for inquiring,

Ray

[Cheryl C]

Great news, Ray. I know you had a really tough time for a while there and were struggling with GVHD and other problems. It's so good to read that you have come through it and out the other side. Well done!

[Bob Macfarlane]

No, I did not fall into a black hole nor did I die and the dogs eat me. I have a hearing coming up before the BVA on the 10th of this month and have been crazy trying to prepare. Decided it was time for a little “me” time.

Some of you know that the region (Saint Petersburg) rated my MDS as anemia and not as leukemia and at zero percent. Leukemia is the coded disease that comes closest to MDS. The VA's "experts" Dr. Victoria Cassano, MD, Underwater Medicine and Dr. Michael Kelley, MD, Lung Cancer respectively opined (Cassano) MDS is NOT cancer and (Kelley) it is cancer just not malignant in my case.

I go in Tuesday with 400+ pages of data that basically says those two at best are totally ignorant of blood cancers or at worse lied.

Oh, I also carry personal letters written on my behalf by Drs. David Steensma, Richard Sloan (Harvard), Ruben Mesa (Mayo), Mikkael Sekeres (Cleveland Clinic) and Judy Karp (John Hopkins). You might want to look them up if you don't know who they are.

Now to share some hopefully good news for all. There is finally a fully funded study that is ready to kick off which is looking at the linkage between AO and MDS/AML. I am not at liberty at this point to reveal who or where but you will know as soon as I am told it is okay to publically release that information.

Attached is a PDF of what I’ll be saying Tuesday in Washington DC at the BVA. Please, please feel free to use all or any part of it. As soon as I am able to afford to do it, I will have the 400+ pages of endnotes scanned and share them with anyone interested.

[Bob Macfarlane]

Before you go in front of the BVA you make darn sure you have letters from more than a single expert that says

"in my medical opinion nothing other than Agent Orange could have caused the veteran's MDS or AML or both",

"in my medical opinion it is very much more likely than not that the veteran's MDS or AML or both were caused by exposure to Agent Orange."

Anything weaker than that, throw in the garbage.

Either ask the doctors to provide their VITAE's or you find the VITAE's on the Internet. Submit the VITAE with the letter.

If you are denied at the BVA, you have a right to question the expertise of the VA doctor that gives an opinion that does not agree with your doctors.

And, be darn sure to point out that MDS should be rated as leukemia and not anemia.

If you have any questions about the attachment, email me or call me at 954-232-7190. It shows that in most cases Mr. VA Examiner is not your friend. As ol' Gomer would say "SURPRISE, SURPRISE, SURPRISE!"

[bailie]

How can any doctor ("expert") definitively say that , "in my medical opinion nothing other than Agent Orange could have caused the veteran's MDS or AML or both" when most people are exposed to so many things since Vietnam, including all of those people who smoked, or were exposed to smoke since Vietnam? Or, were the 50 percent who just randomly had genetic disorders and not environmentally caused?

[Bob Macfarlane]

I read many of you comments and honestly I don't have time for your foolishness. I've been in this battle for over 10 years now and am here to help encourage fellow 'Nam vets and widows of 'Nam vets.

I answer "why it is associated" and you are only interested in telling everyone "why it isn't associated." If I thought you were actually interested in facts, I might respond to you but no pearls before swine has been my motto since this started.