MDS, Agent Orange and the VA

[rar]

I was exposed to benzene while in the Army in 1961. I applied for disability and was denied. Dr. Steensma wrote a very strong letter in my behalf, my doctor wrote a less strong letter. Both letters did address the two points given in the denial. The VSO sent the letters off as a notice of disagreement. She says I should hear back in 3 to 5 years. I said I would be dead by then. She says not to worry my wife can continue the claim.

When I was in the Army (1958 - 1962) the Army encouraged smoking. Coffin nails were five cents a pack at the PX. Smoking was allowed in the barracks and the smoke was so thick it was hard to see across the barracks. Second hand smoke should be classes as a presumptive cause of MDS.

Ray

[barbara a]

Ray, you.made me smile!! I am going on 17 years from initial claim for husband, appeal, he died, survivor benefits claim, 6th appeal!! My appeal is 'formally' on DC docket for this year!!
Vets with MDS claims have died before any decision had been made!
Sad. Dr. Steensma is reviewing my husband's records as I type
GOOD KUCK! DON'T GIVE UP!!
barbara

[rar]

My decision letter said:
VA decision

1. Service connection for myelodysplastic syndrome (MDS)_(due to benzene exposure), Service connection may be granted for a disability which began in military service or was caused by some event or experience in service.

2. Service connection for myelodysplastic syndrome (MDS) (due to benzene exposure) is denied since this condition neither occurred in nor was caused by service.

3.The evidence does not show an event, disease or injury in service. Your service treatment records do not contain complaints, treatment, or diagnosis for this condition. There was no continuity of symptoms from service to the present.

4. Myelodysplastic syndrome is not considered a presumptive condition at this time, therefore we are unable to service connect it using the evidence available in your claims.

If you don't mind, on what grounds was your claim denied?

[barbara a]

Rar...Ignore all that..file an appeal what they wrote to you was my 3rd denial statement...I went from a 1 sentence denial to 16 pages. I have an atty who is writing an appeal and representing me on a contingency basis. If you wish I will share their info
Dr steensma just wrote a review as an independent review of husband's med records. .he addresses most of the points the VA questioned
I also sent to my atty research articles that supported a possible connection between TCDD a contaminate in AO and the abnormality it may have on bone marrow and Hematopoietic cells.
Each case is different and so are board members most of which know nothing about MDS..it literally is a crap shoot for the Vet. AND on an individual case by case appeal process NO PRESODENSE is set by any single decision. PLUS, the regional VA may deny you and if you keep appealing it hopefully gets to Fed level. I wrote extremely emotional letters to Obama ,Biden, governors and 18 months later received notice my appeal went to DC where it sat somewhere for a year!!!
The VA has stopped researching blood/ bone marrow disorders related to AO (2015) SO it's a 1 claim at a time.
How many times have you been denied? Do you have a healthy person to advocate for you??

[Bob Macfarlane]

BVA decisions have always been one claim at a time. They ignore any decisions sited concerning another veteran.

The study being done at Dana-Farber is being led by Dr. Steensma. Within a year we should have the results of whether MDS is linked to Agent Orange or not. I have seen a number of positive decision linking AML to AO. In almost every case the BVA opined that since AO contained "dibenzo" the AML was caused by benzine exposure.

I brought that up before the Institute of Medicine in Chicago in 2010 and was ignored. As I am sure you are all aware, benzine exposure is also a cause of MDS.

[Bob Macfarlane]

Dr. Steensma's study on the linkage between Agent Orange and MDS has started but they would really like to get about ten more participants.

[bailie]

They have my blood sample. It will be interesting to see if they can separate all of those who smoked in Vietnam (and much of their lives) from those who might have been exposed to AO? We were given cigarettes with every meal when I was there. Or, those who did not serve in Vietnam and still got MDS and AML?

[Bob Macfarlane]

I can just picture you standing before the House Veterans' Affairs Committee testifying that David's conclusion is wrong because smoking caused your MDS. You are so sure of yourself, why did you participate? You should have stayed out so you don't skew the results.

[bailie]

I have never smoked. Smoking is considered a primary cause of MDS and AML. Did you ever smoke? Why the attitude?

[Bob Macfarlane]

Because most of the posts you put in the forum, about Agent Orange and MDS, always cry about smoking being a possible cause.

I have worked tirelessly for years attempting to encourage people in their fight with the VA. I have spent thousands of dollars to travel and testify for veterans and widows, only to have you attempt to discourage other veterans and widows. Never have I accepted a single cent accepted for my help.

I have a one track mind and that is to help the veterans and widows. Marrowforums is not a social media site for me. If it were, perhaps I would also have 800+ posts on the site like you.

I have a life outside of here! And as long as MDS allows me, I am going to live that life- - -reduced quality of not.

I am not upset with you personally but start trying to help and not discourage.

[bailie]

Smoking is "a possible cause". There are many, many studies that confirm this. Any association with benzene can be a link to MDS. These findings should not be ignored. That is why this is so difficult for the VA. Most people are exposed to benzene their whole lives and not just their little time in Vietnam.

From the MDS Beacon, "A newly published research review concludes that smoking is associated with an increased risk of developing myelodysplastic syndromes (MDS)." "All ten earlier studies examined the risk of smoking, and included a total of 1,839 people with MDS as well as 2,831 people without MDS (as controls). In order to assess the link between smoking and developing MDS, the studies grouped ex-smokers and current smokers together in one group, and all others in a “non-smoking” group.
Based on their review, the authors of the new study estimate that smokers have a 45 percent higher likelihood of developing MDS than non-smokers."

"The major sources of benzene exposure are tobacco smoke, automobile service stations, exhaust from motor vehicles, and industrial emissions." " About 50% of the entire nationwide (United States) exposure to benzene results from smoking tobacco or from exposure to tobacco smoke." (From Agency for Toxic Substances and Disease Registry).

[Data]

I have to concur with Bob. If someone is on my side, I would expect that they do exactly what Bob is doing - fighting with all his strength for the Veterans who have fought and lost, those who are currently fighting their battle, and those who have yet to begin their fight. It is clear whose side Bob is on. Not so sure of others! If it isn't obvious whose side someone is on, I personally don't want them on my side. I think they wind up being a liability rather than an asset.

Best of luck to the Vets and to David Steensma!!!

Data

[bailie]

Let's be very clear if these comments are directed toward me (Bob's are for sure):

1) I have been supportive of military veterans my entire life. I spent my entire Vietnam experience in the infantry in constant direct combat. I have too much respect for those who fought beside me to let pass these "cheap shots" by Bob regarding my devotion to fellow veterans.

2) I was one of the very first to send in my three large vials of blood for Dr. Steensma's study. I appreciate and support his effort. There is nothing derogatory on my part by suggesting that the task will be very difficult to prove the primary involvement of AO in the different blood diseases.

3) Because I respect and appreciate the efforts of the VA does not make me a "schill" for the VA as Bob likes to portray. The VA is not the enemy.

4) My only contact with the VA was to present my situation to add to the VA database about MDS. I couldn't have asked for better support from them. It was not about compensation or anything for my personal benefit.

5) For Bob to belittle my participation on this forum is regrettable. I don't understand his offensive attitude. If my experiences with these diseases can help anyone, I will continue in that effort. I will be having my 21st BMB today. I have had a stem cell transplant. I have experienced GVHD. I have had 26 cycles of Vidaza along with cycles of Revlimid and other drugs. These experiences along with those of others are valuable for anyone visiting this forum.

[rar]

Bailie,

I am behind you 100%. Bob means well and works hard at it. He would be more effective if he quieted down his abrasive tone, learned to answer peoples direct questions, and didn't make up statistics.

I have had mixed results with the VA. They supply me with hearing aids and free drugs. On the other hand when I went to the VA oncologist for a second opinion she verified the MDS and told me the VA had such a long waiting list for a stem cell transplant that I would be dead before my number came up. I was exposed to unprotected benzene in the Army and was denied disability.

I served pre-Vietnam.

Ray

[Bob Macfarlane]

You dare to impugn my honesty?

Put up or shut up you two, ballie (with his hospital chart and 800+ comments) & rar (never set foot in the 'Nam), because I "didn't make up statistics". My statistics are 100% verifiable and many came directly from Freedom of Information Act requests I filed and were directly answered by Veterans Affairs and the rest from scientific publications.

There are a few comments that came from emails from Ms. Mary Ellen McCarthy who was the then executive assistant to the United States Senate Veterans Affairs Committee. They are duly noted.

On the CD I have supplied to so many veterans and widows of veterans, each and every comment concerning statistics is footnoted and "hyperlinked" to assist in locating the original source.

The are NO I think or I feel comments.

As far as tobacco smoke being the cause of MDS I withhold any judgement on that. Any one ignorant enough to smoke should rather thank God for MDS and not lung cancer.

Someday perhaps David Steensma might share how this AO / MDS study came about and what the impetus might have been?

When the Executive Director of the Aplastic Anemia/MDS International Foundation is willing to say this about you, get back to me!

Now about Bob:
Aside from the fact that he has done more for Vietnam vets with MDS , their spouses and widows than anyone else on the planet , he is still a rascal and can often be a pain in the posterior.

Let there be no mistake, you do something to stand in the way of a veteran or widow of a veteran, and I will be the biggest pain in the ass you have ever known.

[bcope01]

Old thread, newly diagnosed Nam Vet with MDS. I would like to get in touch with Bob McFarlane. Does anyone here have his contact information?

[Data]

This is all I have on Bob. Haven't heard from him in quite a while.

Good Luck.

David

Robert James Macfarlane, Sr.
16611 SW 49th Street
Southwest Ranches, FL 33331-1325
954-232-7190
AirAmrka@aol.com

[barbara a]

i haven't been on the forum in forever. My appeal was granted by a federal judge for survivor benefits. In my defense, i addressed each denial with unemotional facts. David Stensma, MD reviewed my husbands medical records and wrote a review which I presented . My husband's original specialist who saw and diagnosed him in 1992 with MDS suggested i change my research strategy from a direct connection between AO and MDS and research bone marrow failure, blood proteins i did and found a whole new world of connections. I wrote to scientists and medical researchers worldwide quoting their research and drawing comparisons between their conclusions and my husband's medicals asking them to please write their opinions to me- several did and were in my favor. I used these as support documents for my appeal.

The VA no longer researches blood or diseases related to AO, that ceased in 2015. Each claim must stand on its own merit, proof sources. There is nothing fair or easy in dealing with BVA AND it is not impossible. I am waiting to hear from the regional VA...I have waited 17 years what's another 9 months??? Until that fat lady sings I do not believe I won justice for my husband, i will not let my guard down and i continue to research.

If anyone is interested in any of the peer reviewed, scientific/medical articles i have let me know and i will forward them to you. The research scientists were delighted that their work may actually help someone, may solve a puzzle, may be applied in someone's life- they are a great bunch of people.

Bob, my dear friend, glad to hear you are still fighting! I will never stop either. much love

[Bob Macfarlane]

Phone call from 813/2018. Will believe this when I see it !!

STRANGE PHONE CALL !!

Many of you know that I have been in a battle with Veterans’ Affairs over myelodysplastic syndrome since 2005. What you might not know is that, in addition, I have done all possible to help fellow veterans and the survivors of those affected by MDS. I’ve seen many of those veterans and survivors win and get compensated over the years.

After my second Board of Veterans’ Appeals hearing, my claim was remanded to Saint Petersburg for additional information. Historically, Saint Petersburg sits on the remands using the excuse we have a huge number of claims to process and you just need to be patient.

The only way to get information is to call the VA White House Hotline (855-948-2311) --- if Saint Petersburg or any other region gave you an answer it would be 99.99% chance of being a lie. Every week or two, I will call the Hotline and see what is happening.

Today the young man took the time to research the situation. He came back on the line and said he was glad I called because he had never encountered a “like” situation. I understood him to say “a secretary” had the claim.

Wiseass that I am, I responded “How about getting it off the secretary’s desk into the hands of a manager or someone that can make a decision.”

He told me that I had misunderstood him because it had been taken away from Saint Petersburg and THE SECRETARY OF VETERANS’ AFFAIRS is handling it (assume directed it to be handled at least). Don’t know if it was just being a pain in the ass with them or the letter to President and Mrs. Trump.

I can only pray that the letter from following Drs. will make them understand that MDS is not just a mild form of anemia and should be presumptive to exposure to Agent Orange.

David Steensma, Chairman, MDS Program, Dana-Farber/Harvard

Ruben Mesa, Chair, Department Oncology & Hematology/ Mayo Clinic

Judith Karp, Professor Emerita, Oncology & Medicine/John Hopkins

Mikkael Sekeres, Director, Leukemia Program/Cleveland Clinic

Richard Stone, Director, Adult Leukemia, Dana-Farber/Harvard

[Bob Macfarlane]

I have been blessed and only had a transfusion several years ago. Doubly blessed that darbepoetin alfa has kept my HgB above 8 since 2006 except one time. DA is the only thing I take and the transfusion was because some quack told me to stop taking it.

Now for the question.

Last year my primary care at the VA had a test done for ferritin level. No reason other than it had never been done. It came back right at 700 but has since marched up to the edge of 1,400. Liver function has always tested perfect.

I will drink a glass of red wine occasionally (every two to three weeks) and do not smoke. Any thoughts ??

[triumphe64]

Bob,
Glad you are still fighting the good fight.

[Bob Macfarlane]

https://www.militarytimes.com/news/p...UIG7Q.facebook

[Emily59]

That's wonderful. You've done great things.

I saw Dr. Stone's name on your list. He was my oncologist and confirmed my diagnosis of MDS. He's the best.

[Bob Macfarlane]

Hard to believe, very close to fifteen years ago now that I filed a claim with Veterans' Affairs for MDS.

Ten years ago the Board of Veterans' Appeals ruled that my MDS had been caused by exposure to Agent Orange in Vietnam and remanded the claim back to Saint Petersburg to be rated. Months after the remand the region found a doctor willing to opine that "YES, MDS is cancer but not malignant in MY CASE.

On March 10, 2015, I had a second hearing before the BVA. Another positive decision but also another remand in 2017. Somehow, I got blessed and the claim did not end up going back to Saint Petersburg but remained in DC with a group that was supposed to be a FAST TRACK.

Just this past week (almost two years after fast track) I received a Fed Ex package tell me to go to a non-VA (Labcorp) on Monday, June 10, 2019, for a CBC. Funny because the VA does a CBC at least once a month and often times twice.

Then yesterday, I received another package saying I have an interview with a NP on Saturday, June 8, 2019. She is supposed to ask me how my life has been affected by MDS. Her expertise is in high blood pressure and diabetes. My BP runs around 105 / 55 and A1C is normal. Guess I will spend the time educating her on MDS.

Why bother when I was rated at 100% in 2010? According to the coding for MDS I should be rated at 60%. Between 2005 and 2010 I was rated at 40%. The additional 60% would have put me at 100%. Today a veteran with a spouse at 40% receives $685 at 100% it is $3,227. 60 months at a difference of about $2,600 per month does not take a rocket scientist to figure out the "Why bother."

It has been a heck of a ride but I swore I would live until this was settled.

[triumphe64]

Bob,
Thanks for keeping up the fight.
Ron Duncan