No "code" for MDS so they will use the code for anemia (7700) to rate it. Sent to the VA in Washington through my US Senators office documentation that the medical community reckognizes MDS as leukemia (7703 -- 100%) only to get a reply that the VA doesn't care what the doctors say.
What would the doctors know anyhow?
Dr. Judith Karp, Head of Adult Leukemia Department, John Hopkins
Dr. Ruben Mesa, Head of Leukemia Department, Mayo Clinic - Arizona
Dr. David Steensma, Professor, Visiting Physician, Harvard Medical
Dr. Mikkeal Sekeres, Head of Leukemia Department, Cleveland Clinic
I have written to both the US Senate and House Committees on Veterans Affairs asking for a hearing. Anyone that would like to go or get a copy of my documentation, email me back.
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There is power in numbers and voices, so please google... MDS, Agent Orange and the VA .....and you will find how to join him in this effort. Too many Veterans out there have not been properly compensated for this and deserve to be.
If you know of any one with MDS who was exposed to agent orange please do whatever you can by getting together written documentation that MDS is in fact a cancer and is caused by exposure to Agent Orange. Let your authorities as well as other Veterans know that you support them and want to be counted.
I have been by my husband's side (a Vietnam Veteran exposed to AO) who was diagnosed with MDS 3 years ago, (Anemia) according to the VA . He has undergone much chemo therapy and many complications. Any one living with this disease needs assistance, not only physical, but financial. It is only the just and right thing to do to grant benefits to our Veterans who put their lives on the line for us and our country.
Please post here or on the net or contact with your findings. We must keep trying, to get the VA to change the diagnosis code from Anemia to Cancer and acknowledge it as caused by exposure to AO......then service connect our Vets.
Never, never, never give up!
I spoke with both the US House and Senate Veterans Affairs Committees in July and testify before the Institute of Medicine on November 4, 2010. I will supply you with facts and not what I think is true.
I have never given up the battle against the VA and the connection between Agent Orange and MDS/AML. Some know so much more about the subject, they think, than I do but I wonder. I have spoken to the US House and Senate Veterans' Affairs Committees about the subject. Testified before the Institute of Medicine Agent Orange Committee on November 4, 2010 in Chicago.
Individuals like Boacvat are blowing smoke up your skirt about this disease and obviously know nothing about it. I have been supplied with letters from the heads of the hematology / MDS / leukemia departments at John Hopkins, Mayo Clinic, Cleveland Clinic and Harvard Medical that disagree with much of what is posted in here.
MDS in any form is considered cancer by the National Cancer Institute (NIH) and has for years been required to be reported for SEER reporting. Almost all of the medical community, exception being those on the VA payroll, consider MDS to be a bone marrow malignancy.
I have a CD containing the 43 page written version of my oral testimony before the IOM. Backing up that testimony are about 1,000 pages of documentation. There is not a single "I believe" in the entire thing, IT IS NOTHING BUT FACTS. Since you are not allowed in here to say that you may be contacted at AirAmrka at America online dotto COMmercial --- perhaps you can find me though the dotto ORG of MarrowForums.
I accept no compensation. This is a battle I carry on for my fellow 'Nam vets and the widows of 'Nam vets denied by the VA. One fact you folks might be interested in is that 'Nam vets are 14,000+% more likely to get MDS than the general population. That interesting little fact was gleaned from a Freedom of Information Request I submitted to the government.
This is a recent email I sent to a few hundred 'Nam vets and widows. The link is very relavent to your battle with the VA and you should share it with your two US Senators and your Representative. It is not what you have, how you got it but who you went to West Point with. The letter was sent to Florida Senators Nelson and Rubio, Secretary Shinseki and the Chicago Tribune (they ran the article). I am in constant contact with those following this via email but find it hard to do that and keep up here and on
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on their MDS and Vietnam Veterans forum. In the future I will make an attempt to keep relavent materials posted in here also.
I was recently given a great compliment by a member of the US Senate Veterans' Affairs Committee, they said, "Bob, Shinseki knows you by first name and you are probably the most hated man in Washington." Praise God!
I am writing on behalf of:
Paul & Susan
Address removed for privacy
Paul like myself has myelodysplastic syndrome from his service in Vietnam. He has now, like I was, been denied service connection by Veterans' Affairs in St. Petersburg twice. The Board of Veterans' Appeals, in a 4 1/2 year battle did grant me service connection.
St. Petersburg denied me compensation after the BVA decision because in their eyes MDS is just pesky anemia. In the eyes of the National Cancer Institute though, it is cancer. But, this is not about me.
Paul's MDS has progressed to acute myelogenous leukemia (AML); a fast-growing cancer of the blood and bone marrow. Over 1/3 of all MDS cases will end up going here. Paul is at Moffat and his wife is at her wits end.
I know the routine of needing the permission signed by him to look into the case but he is in no condition to be doing that at the moment. There are almost no cases where a veteran survives MDS to AML and I would seriously doubt that Paul does.
He does not need the bureaucracy of the system --- he and Susan need intervention on their behalf by someone that gives a damn because the VA doesn't.
When Paul dies, all the accrued disability due this family will disappear because "disability accrues to the veteran and not the survivors" (words straight out of BVA decisions.) Susan will be in for one hell of a battle to be granted Dependent Indemnity Coverage. Again words straight from BVA decisions “at the time of his death the veteran was not rated for any service connected disability. Request for DIC is not warrented”
Paul should have been rated as 100% Total and Permanent but he did not attend West Point with Secretary Shinseki. (http://www.chicagotribune.com/
Be interesting to ask Mr. Secretary how one of his classmates could move through the system in days while others continue to be delayed, denied in the hopes that they will die. If you went to West Point with Mr. Secretary, Agent Orange causes MDS and AML --- otherwise, you are just out of luck.
Names and claim number removed to protect the widows privacy:
Sec. Eric Shinseki, Department of Veterans' Affairs
Dear Sec. Shinseki:
On September 29, 2010 The Department of Veterans Affairs denied my request for dependency and indemnity compensation (DIC) for the death of my husband, COL. Mxxxxx Xyzxyzxyz. VA Claim#?????????????????. I disagreed with their decision and sent in a Notice of Disagreement (NOD). To date, I have not had a decision on my appeal.
I understand that you have interceded in the usually very time consuming request for compensation to the Department of Veterans Affairs for one of your West Point classmates and that his claim was successfully processed in a short time. (Chicago Tribune, Dec.2006)
I would like to also request your help in processing the claim I have put in to the Department of Veterans Affairs.
My husband was not a West Point graduate, but he was a 30 year career officer, he taught at the Academy for 5 years, and both my oldest son and my son-in-law are graduates. Another son was a ROTC graduate. Maybe that’s enough to earn your help.
The following is a short synopsis: My husband was exposed to the Agent Orange herbicide because of his service in Vietnam during 1969 to 1970. Additionally, he was in Quang Tri in the 75thSupport Battalion of the 5th Infantry where the component chemical supplies for napalm were received and combined. Benzene is one of the components of napalm, which was used extensively in fighting the Viet Cong in the Quang Tri area.
In May 2005, the McGuire Veterans Hospital in Richmond, VA confirmed Mxxxxx’s bone marrow malfunction, and Myelodysplastic Syndrome (MDS)was diagnosed. To date the V.A. Agent Orange list of acknowledged cancers does not include MDS.
Between May 2005 and September 2009 my husband was treated at the V.A. Hospital in Richmond, VA for MDS, which progressed to Chronic Myeloid Leukemia (CML) and then to Acute Myeloid Leukemia (AML.) Complications from the AML finally took his life on 30 September 2009.
Please ask the Philadelphia Regional Office to quickly return a favorable decision on my request for DIC.
Thank you,
Lillian
If you google me "Bob Macfarlane" you will find me and you will be able find my email address. This site does not allow you to post your email address. I send to anyone that asks for it a CD with 43 pages of testimony before the Institute of Medicine about AO and MDS.
The testimony is highly documented with facts, figures, articles and letters written to me personally by some of the finest oncologists / hematologists in the world. There is no "I think" or "I feel" or "I believe" -- it is just a Dragnet presentation -- "Just the facts ma'am and only the facts." That portion is over 1,000 pages and are in the form of active links (point and click on the footnotes).
I DO NOT accept compensation for this and feel insulted if offered. I don't even accept reinbursment for the postage.
This issue has been a crusade of mine for years now. You all have heard that the VA will "Delay, Deny and Hope We Die" but I think it is better to say that they will "Delay, Lie to Deny You and Just Wait for You to Die."
It is, by the way, my testimony before the IOM in Chicago.
RCMD-RS
Given 27 months eight years ago...
Never give up
Reason you have to Google me is that this forum will not allow users to simply help other users via email. Try the search and you will find my email, telephone and home address.