MDS, Agent Orange and the VA

[DougH]

Working with a 60 year-old Veteran who was routinely sprayed with the herbicde Agent Orange in Viet Nam 40 years ago, and now has been diagnosed with MDS. Title 38 C.F.R. 3.309(e) lists the diseases associated with exposure to certain herbicide agents, and grants presumptive "service-connection" for VA benefits. MDS is not specifically listed, but many closely related diseases are, and it would appear that there might be a simple definitional disconnect versus overt decision to keep MDS off of the list. Has any reader gotten a rating official to acknowledge MDS as a "related disorder" for a favorable service-connected decision? Thank you for your time on this query. DougH

[AndreaTFTPTF]

I know of a few VA cases that have gotten through based on exposure to contaminated water at Camp Lejeune...not sure about Agent Orange in Vietnam with MDS though. I'll look around and see what I can find though.

[DougH]

Appreciate the prompt resonse, and anything you can do for the Veteran.

[launch]

My husband was at Takhli Royal Thai Air Force Base. While he was there, it was an agent orange storage facility. My husband was recently dx with MDS. I haven't seen this addressed for Takhli yet, but, we're keeping our eyes open. He was stationed there for 1 year.

Cindy

[Neil Cuadra]

Some background information may be helpful for forum readers.

According to the Aplastic Anemia & MDS International Foundation, scientific evidence has established a link between Agent Orange and aplastic anemia but not between Agent Orange and MDS. MDS is not on the Department of Veterans Affairs (VA) list of "diseases subject to presumptive service connection" but there is anecdotal evidence of an association with MDS, and some veterans with MDS have successfully challenged the VA and obtained benefits.

Since 1979 the U.S. Congress has directed that studies be made of the health effects of exposure of Vietnam veterans to herbicides containing dioxin. Under the Agent Orange Act of 1991, the National Academy of Sciences (NAS) began reviewing the scientific evidence concerning the association between exposure to herbicides in Vietnam and diseases suspected to be related to that exposure. From that came the "presumption of service connection" for some diseases: Hodgkin’s disease, multiple myeloma, non-Hodgkin's lymphoma (NHL), chronic lymphocytic leukemia (CLL), and a number of other diseases and cancers. NAS issued its first four reports to the VA in July 1993, March 1996, February 1999, and April 2001.

The VA has made changes to the "presumption of service connection" list based on these NAS reports (example from 1996, example from 1998) and also issued a list of diseases not associated with Agent Orange (example from 1996, example from 2007).

In a June 2002 notice, the VA detailed why leukemia other than CLL was not considered to have an association with Agent Orange, saying that based on NAS reports and several research studies "there is inadequate or insufficient information to determine whether an association exists between exposure to herbicides and leukemia. In their conclusion they said

Taking account of the available evidence and NAS' analysis, the Secretary has found that the credible evidence against an association between herbicide exposure and leukemia outweighs the credible evidence for such an association, and he has determined that a positive association does not exist.

It's easy to see why veterans with MDS would want to see additional research since the NAS and VA conclusions were based on "inadequate or insufficient" information.

The Bone Marrow Failure Disease Research and Treatment Act, currently under consideration in Congress, would direct research into environmental causes of MDS and other acquired bone marrow failure diseases. The specific environmental causes to be studied would depend on which research proposals were submitted and which were funded, so there's no telling if Agent Orange would be studied if the bill passes, but we need to know more about all causes of MDS. I encourage everyone in the U.S. to ask their congressional representative to support the bill.

[DougH]

As we say in Western Wyoming, Thanks Partner.

I've been reviewing the legal cases where Vietnam Vets got either a positive or negative service connection finding for MDS and exposure to Agent Orange, and have embarked on a way forward. What I have not been able to find is a study/opinion/scientific evidence that states "Bone marrow failure/secondary MDS causes include exposure to certain toxic chemicals such as Dioxin". That surprises me. FYI, the NSF has never evaluated the association between Agent Orange exposure and MDS based on a word search of over 35,000 pages of Agent Orange reports going back to 1994. I intend to petition them to do so in their next biannual report.

[Don Sim]

Doug
I am new here and this is my first post, so please forgive me!! I was DX with MDS two yrs ago, and a yr ago found out that three places the Army Stationed me were Test sites for Agent Orange/Purple/Blue.

VA says that there is no connection so far, but that is how the system works I guess!! But I found this report and thought I would share it with you as all I deal with is UTI Infections that my Dr's say are because of my MDS!

http://www.ncbi.nlm.nih.gov/pubmed/2003516

Keep me posted!!
Thanks Don

[Bob Macfarlane]

I am one of the few that have gotten the BVA to agree that my MDS was caused by exposure to Agent Orange in Vietnam. It was a years long battle and my documentation is voluminous. I am more than happy to share what I have with anyone interested. I would rather fax the information but I can copy it and mail it. Impossible to email because of the size.

I hope this doesn't break any rules but you may contact me at AirAmrka@aol.com

Don't think the battle is over. My RO in St. Petersburg had the decision sent back to them for rating. I was rated at zero percent because the VA claims not to know what MDS is and therefore rated it as anemia. I will share letters from my private oncologist, the head of the Adult Leukemia Department at John Hopkins and a professor from Harvard that I've sinced forwarded to the RO. In all three cases, the doctors (in nice words) tell the RO that they are idiots.

[Neil Cuadra]

Posting an email address is fine. Members who don't want to post their email address publicly can send or receive messages through the forum system instead. See Member-to-member Communications in our Frequently Asked Questions.

[Bob Macfarlane]

Meant to include this link to the decision yesterday but forgot it

http://www4.va.gov/vetapp09/files4/0930914.txt

Must be old-timers disease kickin' in?

[colemi3]

Hello All,

My dad was diagnosed with MDS 8 years ago - when he was 59. I filed a claim then and was denied. I'm wondering if I should file another claim and get denied and then hire a lawyer to appeal or would it be better to find a doctor who has linked Agent Orange with MDS and have him see my dad and then hopefully write a letter which is called a nexus I think? Then attach that to a claim and submit it.....

Compared to 8 years ago, the veterans who have become ill with MDS has just skyrocketed from just what I have seen on the internet.... isn't there a way to compile a list of veterans who have become ill with MDS? Is there a way to take all these names and petition Washington and congressman and senators? What else can we do? How much more do they need to admit that MDS is caused by Agent Orange too?

My dad has gone through so much in the past 8 years.... so many treatments, hospitals, emergency rooms, transfusions, chemotherapy, clinical trials.... it's not fair and they need to take responsibility for it.

If there is a way for me to help, please let me know.

Thank you

[Bob Macfarlane]

It is time for us to begin to think about going after the VA to make MDS a disease that is presumptive. Those of us that are 'Nam vets or supporting a 'Nam vet knows that this disease was caused by our service in Vietnam and exposure to Agent Orange.

Someone needs to be willing to accept the leadership and follow through on it. We need to begin to get other vets that were exposed to AO and now have AA or MDS or a complication from either to join into the fight. We need numbers and I am sure each of us knows at least one other veteran that was exposed to AO and now has a bone marrow disease.

For the present I am willing to start gathering names and carry the flag against the VA bureaucracy. I cannot do it all by myself. If there is not sufficient interest in the battle, I certainly will understand. As for myself, I believe I am now well on the way to being rated at 100%. I don't need the fight but am willing to participate.

You guys that were in country remember the importance of "body count?" The battle will involve the same. We need our brothers and sisters from the 'Nam that have this disease to be identified. We need the loved ones that have lost their vet to the disease to step forward and be determined that the loved one did not die in vain.

If you are not interested in the fight, just ignore this message. If you are interested in the fight just to make it a political issue, ignore this message.

If you are interested in the fight to help others, contact me.

[Wayne]

Hi Bob,

Unfortunately, it is too late for some. But, there is hope for all Veterans and their families who are going through this "service connected" issue. It will take many of us to unite .....and some fine leadership ......and the time and work will become productive if we all get it together. We are here to count and support you however we can.

Contacted you at the above email address with more details.

Will spread the word and hope others will register here too.

[Bob Macfarlane]

Good morning folks,

I just received a call from the young man, Mitch, carrying my case in the office of my United States Senator the Honorable George Lemieux.

Mitch told me he has represented veterans with VA problems for five years. What happened this morning he has never seen before. The Acting Under Secretary for Benefits has instructed my regional office, Saint Petersburg, to forward all of my medical records and claims paper work directly to his office.

Of course, never lose sight of the fact that his answer will be YES or NO. If yes, he could decide that our disease should be presumptive for all Vietnam veterans. Should that happen, all of the credit will go to Dr. Timothy Aliff, my private oncologist and Drs. Judith Karp (John Hopkins), David Steensma (Harvard Medical) and Mikkael Sekeres (Cleveland Clinic). I emailed every hematologist I could locate and these last three doctors are the only ones that bothered to respond. And did they ever respond.

The afore mentioned doctors are the ones that took the time to look at my records and write letters of support. Allow me to add that not a single one of them would accept compensation for their work.

We also owe our gratitude to those in the VA in Washington. It would seem that after all of these years they are beginning to further address what was done to us in Vietnam. Agent Orange has done horrible things to our bodies. They need to change their system though. A veteran should not have to reprove the relationship of their disease to Agent Orange once another veteran has proven it.

In diseases where it is so clear cut (AA/MDS/AML/CML/CMML and others) that it was caused by Agent Orange, we should only have to prove the relationship once. The BVA should stop using the phrase "giving the benefit of doubt" in their decisions.

If they decide NO, I will ask for a hearing before the Veterans Affairs committees in both the House and Senate. I will do likewise if they decide in my favor but my favor only. If NO, I also have the route of going before the Court of Veterans Appeals.

Those of you with the diseases, stay strong, pray and keep the faith. Tenacity is the only way we will win this battle. While it at times seems like we are tilting at windmills, windmills have been known to fall down.

***************

You all knew that some things are worth dying for. One's country is worth dying for, and democracy is worth dying for, because it's the most deeply honorable form of government ever devised by man.
--Ronald Reagan, at the 40th anniversary of the D-Day invasion at Normandy, France

May God always bless America in all ways and may God protect our warriors, "We will not waver, we will not tire, we will not falter, and we will not fail. Peace and freedom will prevail." George W. Bush, 2001

I aver that I have no expectation of privacy with respect to any communications I might have with suspected or known al Qaeda members or persons linked to al Qaeda or related terrorist organizations. Indeed, I'd like to meet the person who would pretend to be victimized by an interception of a call he had with al Qaeda.

Bob Macfarlane
Disabled Vietnam veteran and proud to have been allowed to serve this great nation...
In the service of a Jewish carpenter -- a relationship, not a religion
John 14:6 / Mathew 10:32-33
The tomb is empty because HE is risen

[Zoe's Life]

Bob,

Keep it up! You are making a difference for so many. Yes, those hematologists responded, but you got it all going.

Zoe

[tsquare]

I was recently turned down by the VA for compensation for MDS. I stumbled onto the Marrow forum today and deide to join. Also, I contacted Senator John Cornyn of Texas about MDS and agent orange. I was in Vietnam from March 1970 to March 1971 and was exposed to agent orange many times. I was diagnosed with the diseas about two years ago. I appreciate all the efforts you have exerted and maybe the VA will finally get the message.

Originally Posted by Bob Macfarlane

It is time for us to begin to think about going after the VA to make MDS a disease that is presumptive. Those of us that are 'Nam vets or supporting a 'Nam vet knows that this disease was caused by our service in Vietnam and exposure to Agent Orange.

Someone needs to be willing to accept the leadership and follow through on it. We need to begin to get other vets that were exposed to AO and now have AA or MDS or a complication from either to join into the fight. We need numbers and I am sure each of us knows at least one other veteran that was exposed to AO and now has a bone marrow disease.

For the present I am willing to start gathering names and carry the flag against the VA bureaucracy. I cannot do it all by myself. If there is not sufficient interest in the battle, I certainly will understand. As for myself, I believe I am now well on the way to being rated at 100%. I don't need the fight but am willing to participate.

You guys that were in country remember the importance of "body count?" The battle will involve the same. We need our brothers and sisters from the 'Nam that have this disease to be identified. We need the loved ones that have lost their vet to the disease to step forward and be determined that the loved one did not die in vain.

If you are not interested in the fight, just ignore this message. If you are interested in the fight just to make it a political issue, ignore this message.

If you are interested in the fight to help others, contact me.

[Bob Macfarlane]

If you were turned down by your Regional Office (RO), file a Notice of Disagreement as soon as possible.

We have been blessed enough that there are four very HEAVY hitters that have joined in our fight. World renowned doctors all, they are:

Judy Karp, Director Adult Leukemia, John Hopkins
David Steensma, Associate Professor of Medicine, Harvard Medical
Mikkael Sekeres, Director Leukemia Program, Cleveland Clinic
Ruben Mesa, Director of the Acute and Chronic Leukemias Program, Mayo Clinic Arizona

I have a mountain of documentation showing that MDS is considered by the medical community to be cancer. Also available is an Excel Spreadsheet I put together showing the BVA decisions for and against the veteran concerning MDS and Agent Orange.

Don't give up or they win. We are close.

[2mm]

This message is to add another Vietnam vet to the list of MDS cases listed in these pages. The VA has stated that in l969/70 QuangTri at the DMV did not have Agent Orange exposure, and put that into this vet's record.

However, there was benzine exposure at the supply depot and in extensive use of napalm during heavy fighting.

The MDS diagnosis and treatment at the VA has lasted for 3 years, and the MDS has progressed to Chronic Mylo Leukemia (CML), then to Acute Mylo Leukemia (AML), then back to CML.

Are there any other cases that mirror this scenario?

Any suggestions?

[Bob Macfarlane]

v2mm, That is bull. If you set foot in Vietnam between 1962 and 1975, you are presumed to have been exposed to
Agent Orange. That presumption was set years ago!

Would attach the letters received from Bob Filner but they are in PDF format. Anyone that wishes a copy, email me an address to AirAmrka@aol.com and I will send you the letters.

Now is the time to stand up and start your writing campaign. We have the attention of the Chairman of the United States House of Representatives Veterans Affairs Committee.

Write to:

The Honorable Bob Filner
Chairman
House Committee on Veterans' Affairs
335 Cannon House Office Building
Washington, D.C. 20515

or fax your letter to: (202) 225-2034

Tell the chairman how the VA bureaucracy has been screwing us for so long. Ask the chairman to grant us a hearing before his committee. Some get 100% T&P, most get denied and some get accepted but treated as if MDS is just anemia and not leukemia. Send emails to all of those with a @va.gov address.

If you wish not to participate and want to be taken off the email list, just send me an email and I'll remove you.

[Bob Macfarlane]

Here they are. Not hard to figure out who you are writing to. If you are wondering who they are go to www.va.gov and look 'em up.

bradley.mayes@va.gov,
eric.shinseki@va.gov,
Michael.Cardarelli@va.gov
michael.walcoff@va.gov,

These are the big hitters when it comes to benefits.

[Bob Macfarlane]

Good afternoon,

As Larry pointed out, it will do no good to send "snail mail" to Washington. This is due to the fact that they now "nuke" all mail to make sure it is safe. The process takes several weeks to get through. If you are going to write the the chairman, please fax your correspondence to him.


Those of you that were granted disability for MDS should also write to the chairman. It will be further proof of just how dysfunctionally the system actually works. I am thinking of Carl and Jim specifically. You don't have to use your names but I don't know how much weight an anonymous correspondence would carry. Both of you were granted 100% T&P.

If you have personal documentation from your doctor that "MDS is a Three Letter Word for Leukemia", send it to the chairman. Send him copies of your denial letters from the Regional Office and from the Board of Veteran's Appeals. We are almost there, please don't wimp out now. My fight has been a battle for all of us. There has hardly been a day in the past several years that I've not done research or written about this disease.

You have seen my mountain top highs and my darkest days in the valleys. Many times I have not been very nice in my correspondence with the VA. For that I am personally sorry but still feel like they deserve it. Our honorable service to this nation is what made us ill and in all probability shorten our life. It is now time for the VA to accept their responsibility to us.

Left South Florida last Wednesday for the woods of Georgia because I truly believed there was nothing else I could do. Just had to throw my hands up and finally admit that all that could be done at that point had been done and it was now in the Lord's hands. I had to get away from the fight. Then this past Saturday the letter arrived from the Chairman of the United States House of Representatives Veteran's Affairs Committee. God has provided us with this opportunity.

Matthew 6:26 (NIV) "Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" This is a great scripture but never fail to remember that the food is not thrown into the nest. Those that sit a wait for others to feed them will starve.

For those of you awaiting a decision, your benefits accrue to you and not your spouse. If we go off and die before this is settled our families will not get a cent of our back compensation. To those that have been granted compensation, don't forget the case of the widow that was told the VA had made a mistake in granting 100% T&P to her dead husband. Who will speak for your wife when you are gone?

I have to get to a library while in Georgia for email access. If anyone wishes to speak with me my cell number is 954-232-7190.

God bless you all and keep the faith, TENACITY!!!!!!!!!!!!!!!!!!!!

Bob Macfarlane
Still proud to have been allow to serve this great nation...

A SPECIAL NOTE TO JOHN HUBER OF THE AA/MDS FOUNDATION INTERNATIONAL:
You wrote to me once that when the time was right you would release your "thousands" of supporters in this cause. Do you not think that now just might be the right time? Chairman Bob Filner has asked for a report back from the IOH no later than June 18th. Nine days and counting will show just how committed some are to the cause.

Don't worry I won't have the funds to attend the AA/MDS conference in July. One less troublemaker to be concerned about.

[Bob Macfarlane]

I am going to the AA/MDS Conference in July. We have managed to get the attention of the Honorable Bob Filner, Chairman, US House Veterans Affairs Committee and hope to meet him while in DC.

The faxes requested are to tell your personal stories of what a nightmare it is to deal with the VA about MDS. He has requested the the Institute of Medicine explain to him what MDS actually is by June 17. We have managed to get above Veterans Affairs to their real bosses.

Actually, I am glad that they did not just grant me 100% T&P like they did for one of my friends and fellow 'Nam vet. Had they done that, I would probably never gotten involved in the fight for other Vietnam veterans with MDS. The next campaign will be to take on AA until MDS does me in.

TENACITY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Bob Macfarlane]

Received letter yesterday from Bradley Mayes, Director Benefits, VA Washington that they have no code for MDS (code 7703 is leukemia) and will continue to treat MDS, in my case, as difficult anemia. Sent my claim back to the RO. What follows is my letter to John Huber, Head of AAMDSIF.



Good Sunday afternoon John,



As you can see from the attached letter, they just don’t care what the medical community has to say about MDS. They have sent my claim back to the RO and you can bet the life of your first born male child that St. Petersburg is going to say hmy HgB is 10 or above and MDS is just a difficult form of anemia. Please share this letter and the letter from Bradley Mayes with Rep. Bob Filner when you meet with him in the morning



I find it very interesting that they only note the letters from Drs. Aliff, Karp and Steensma. They had the letters from Drs. Sekeres and Mesa but chose to ignore those?



As for there not being a code for MDS, I had believed that we had made a strong case that MDS should be classified as leukemia / bone marrow cancer. There is most certainly a code for leukemia and it is 7703 in their code book. By making the choice to ignore the doctor’s letters and classify MDS, in my case, by its symptoms as anemia (code 7700) they are able to grant zero percent disability. They would say that the classification of Dr. Carl Reigel and John Thomas who are both 100% T&P stand on their own is bogus and arbitrary.



They recently re-evaluated John and keep him at 100% because his “cancer” was still under treatment. What is taking Aranesp weekly, if it is not still being under treatment? I know I “pissed” (excuse the term) them off at the VA and their rulings concerning me now have to be purely retribution for my getting them upset.



Never, ever give up! TENACITY!



Bob

[Bob Macfarlane]

Good afternoon folks,

I am for sure going to meet with Mary Ellen McCarthy of the US Senate Veteran's Affairs Committee. Awaiting word from the US House of Representatives Veteran's Affairs Committee.

God works in mysterious ways. Should have made my reservation to return to Atlanta on July 13th at the end of the conference. He took over and made me make the mistake of booking it for July 14th. The person we, John Huber Director of AA/MDSIF and I, will meet with is only available on the 14th!

This email is to beg any of you that have personal VA correspondence on AA or MDS, positive or negative, to get it scanned and emailed to me. Time is short. Doug I have yours and thank you. It should be very helpful.

Any of you that are not familiar with the Aplastic Anemia / Myelodysplastic Syndrome International Foundation need to bookmark their site. The should be an extremely powerful and important statement coming from the AA/MDSIF in the next few weeks. The URL is http://www.aamds.org/aplastic/ These guys are fighting for our rights as 'Nam vets with those diseases.

Hopefully, I will see some of you at the conference in Bethesda. Just look for the over weight, balding, white haired, old fart that speaks too loud. 'Nam did nothing for my hearing either. Probably have the service ribbon on my lapel and / or be wearing a 'Nam vet cap.

Have a safe and blessed Fourth of July. Above all, you fellow 'Nam vets understand that Freedom is Never Free. Welcome Home Bro's.

Never ever give up or they win! TENACITY!!!



God bless you all and may He wrap His hedge of protection about those serving this great nation now. Any of you that don't believe, please remember that at the end it will be smoking or non-smoking.

Bob Macfarlane
Disabled Vietnam Veteran and proud to have been allow to serve this nation

[Debbie W]

nothing to contribute, but wanted to say thank you for fighting for the veterans.