PDA

View Full Version : MDS, Agent Orange and the VA


Pages : [1] 2

DougH
Wed Oct 7, 2009, 12:05 PM
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
Wed Oct 7, 2009, 12:14 PM
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
Wed Oct 7, 2009, 03:21 PM
Appreciate the prompt resonse, and anything you can do for the Veteran.

launch
Wed Oct 7, 2009, 10:55 PM
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
Sat Oct 10, 2009, 07:05 PM
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 (http://www.epa.gov/EPA-GENERAL/1996/August/Day-08/pr-23582.html) from 1996, example (http://www.thefederalregister.com/d.p/2008-09-23-E8-21998) from 1998) and also issued a list of diseases not associated with Agent Orange (example (http://www.epa.gov/EPA-GENERAL/1996/August/Day-08/pr-23583.html) from 1996, example (http://www.thefederalregister.com/d.p/2007-06-12-E7-11247) from 2007).

In a June 2002 notice (http://www.thefederalregister.com/d.p/2002-06-24-02-15782), 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
Wed Oct 14, 2009, 06:55 PM
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
Sat Dec 12, 2009, 05:04 PM
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
Tue Feb 23, 2010, 12:14 PM
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
Tue Feb 23, 2010, 03:08 PM
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
Wed Feb 24, 2010, 09:33 AM
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
Thu Feb 25, 2010, 01:06 AM
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
Fri Feb 26, 2010, 10:59 PM
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
Tue Mar 23, 2010, 05:15 PM
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
Mon Apr 5, 2010, 04:22 PM
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
Mon Apr 5, 2010, 09:34 PM
Bob,

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

Zoe

tsquare
Sat May 1, 2010, 02:27 PM
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.








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
Sat May 1, 2010, 05:15 PM
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
Mon Jun 7, 2010, 12:15 AM
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
Mon Jun 7, 2010, 01:38 PM
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
Mon Jun 7, 2010, 02:06 PM
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
Wed Jun 9, 2010, 02:49 PM
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
Mon Jun 14, 2010, 10:49 AM
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
Sun Jun 27, 2010, 05:21 PM
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
Sat Jul 3, 2010, 01:33 PM
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
Sat Jul 3, 2010, 10:07 PM
nothing to contribute, but wanted to say thank you for fighting for the veterans.

:)

Tommy Daniels
Fri Jul 9, 2010, 06:39 PM
Bob, I just registered on the site today and really like your style, etc. Can you provide me with contact info on those docs you name below?

I'm already VA rated at 80% for SFW and GSW's incl 30% PTSD. I recently filed a claim for Primary Anemia since MDS is not in the VA book and today got a letter from VA wanting supporting evidence from my doc. It may save us a lot of time if we can contact the four below to get supporting literature/statements on the connection between dioxin exposure and MDS.

Thanks,

Tommy Daniels
Savannah


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

Bob Macfarlane
Tue Jul 13, 2010, 06:42 PM
jkarp2@jhmi.edu
david_steensma@dfci.harvard.edu
sekerem@ccf.org
david_steensma@dfci.harvard.edu

Back in Florida next week. Will have a great deal to report back from my trip to DC and the AA/MDSIF conference.:eek:

Bob Macfarlane
Tue Jul 13, 2010, 06:45 PM
mesa.ruben@mayo.edu,

jkarp2@jhmi.edu
david_steensma@dfci.harvard.edu
sekerem@ccf.org
david_steensma@dfci.harvard.edu

Back in Florida next week. Will have a great deal to report back from my trip to DC and the AA/MDSIF conference.:eek:

Neil Cuadra
Wed Jul 14, 2010, 08:12 AM
Bob - How did the meetings at congress go yesterday?

Bob Macfarlane
Wed Jul 14, 2010, 08:19 AM
We got at least one co-sponsor for HR12-30 from Florida. I do believe that the other three Representatives will also sign on. John Huber and I meet face to face with Chairman Bob Filner today at the House VA Committee. When I make it back to South Florida next week I will post a complete reply on the conference and my meetings with the VA Committees in both the House and Senate.

Bob - How did the meetings at congress go yesterday?

Gerry T.
Sat Jul 17, 2010, 04:38 PM
I may be a little slow but for 20 yrs I did my job and retired in 82. Since then I have been dx first with type 2 Diabetes, then Heart Problems, and two years ago "Pre Lukemia" now they say MDS unclassified... My question is: I was never exposed to Chemical Agents that I know of. Never spent time in Viet Nam.. the closet was Guam.. Do I put in a claim to the VA to see if it can be determine if any of my assignments exposed me to chemical hazards... Thanks GT

Bob Macfarlane
Sat Jul 17, 2010, 05:25 PM
AO was also used in Korea on the DMZ. Was in the water at LeJune, etc. Send me a list of your assignments and I'll see if I can help you out.

Gerry T.
Mon Jul 19, 2010, 06:21 PM
AO was also used in Korea on the DMZ. Was in the water at LeJune, etc. Send me a list of your assignments and I'll see if I can help you out.

As I did not work in a hazardous career fields, I never thought much about getting sick later in life. 1966/69 Truax Fld Wisc.. 69/72 Athenia AB Greece, 72/73 Eglin AFB, Fla.. 73/76 Anderson AFB Guam.. 76/77 Osan AFB Korea.. 77/80 Williams AFB, Az... 80/82 Langley AFB Va., & Civil Service 83/90 Carswell AFB, Tx.. I don't think I missed a day of duty for any illiness even a cold and those little bottles of GI cough medicine took care of those occassional coughs and sore throats......Being retired never thought much about filing with VA.. Thanks for any info.. GT

Bob Macfarlane
Mon Jul 19, 2010, 06:31 PM
You might find this interesting reading:

http://www.vva.org/veteran/1007/ao_spraying.html

Bob Macfarlane
Mon Jul 19, 2010, 06:59 PM
Back from 2006

Bob Macfarlane
Mon Jul 19, 2010, 07:02 PM
Two parts

Bob Macfarlane
Tue Jul 20, 2010, 07:44 AM
jkarp2@jhmi.edu

Bob Macfarlane
Tue Jul 20, 2010, 07:48 AM
mesa.ruben@mayo.edu

Bob Macfarlane
Tue Jul 20, 2010, 08:08 AM
sekerem@ccf.org

Bob Macfarlane
Tue Jul 20, 2010, 08:11 AM
david_steensma@dfci.harvard.edu

Stephanie Hamm
Thu Jul 22, 2010, 11:13 AM
We lost our adopted son, Garrett, in 1997, to complications from a bone marrow transplant he underwent when his marrow became too fibrous for the conventional treatments of that time. He was being seen by military doctors and by Dr. Neal Young at NIH - where he underwent one round of ATG in December 1995. After a horrible year in 1996 Dr. Young told him that the only option for him was a transplant. We found his biological Father - who was a half-match - and went ahead with the transplant. Garrett developed an Aspergillus fungal infection and died 2 months into the transplant procedure.

Garrett was born in 1968 near Bangkok, Thailand, to a younf Thai woman (17 or 18 years old at the time) and was fathered by an Air Force member who had served on and off in Thailand from 1966 to 1971. He was not a crew member of the fleet that delivered Agent Orange - but in that environment his exposure may have been from other situations.

Garrett was brought to the United States in 1972 - at the age of 4 and travelled the US for 2 years in search of his biological father. He became a beloved part of our family at the age of 8.

My question is - Garrett's biological son, Dillon, who is 16 this month, is now exhibiting traits of Marfans Syndrome. I have read through the VA site and although they are considering a lot of conditions as connected with exposure to Agent Orange, Marfans is one of those conditions specifically called out as not being one of them.

We are not looking for health care from the VA - BUT - we want all the information we can get because Dillon's family is meeting with a geneticist on August 23rd at a hospital here in Texas.

I will read all of the links you have provided here - and understand that the VA is looking at a lot of links - but am also looking at short cuts for the information gathering process.

Thank you!

Bob Macfarlane
Thu Jul 29, 2010, 08:57 AM
Morning Stephanie,

I have not been ignoring your request. Everyday I try to dedicate an hour or so to researching Marfan's. I've also seen the document produced by the VA that they name "Marfan's" as an inherited disease and specifically exclude it from the birth defects list from Vietnam.

Certainly you have by this time found the National Marfan Foundation ( Marfans.org ). The also have a Teen Site that Dillon can communicate with at ( teennetwork@marfan.org - http://marfan.org/teenspace/ )

I will continue to search. Never forget that there is one Great Physician you should be going before for help.

Bob

Stephanie Hamm
Fri Jul 30, 2010, 09:46 AM
Bob,

Thanks so much for these resources. You confirmed what we had learned. If you happen on anything else we would appreciate it - but we can do the work and will do it - so that you can focus on the other things you are doing.

Stephanie

Bob Macfarlane
Thu Aug 5, 2010, 05:16 PM
Good morning,

I know that the VA is currently in the process of making a decision on my claim (fourth or fifth time?) and I fully expect they will give me zero percent again because there is no code for Myelodysplastic Syndrome or is there?

Attached is a letter from a friend, fellow Vietnam veteran and fellow MDS patient. The difference between us is that the VA has denied that AO "in his case" caused MDS and found that "in my case" AO caused my MDS.

The randomness of the VA's decisions turns my stomach. I bet the VA is also upset, that with all of their delaying, denying, that I haven't just gone off and died.

To the point. I am given zero percent because MDS is nothing more than anemia and Larry is denied VA insurance because MDS is an incurable form of leukemia. Allow me to remind you again that leukemia is VA Code 7703 - 100% whenever being treated and I will never be in remission. MDS is incurable, therefore, it is total and permanent.

Perhaps one or the other made a mistake in their decision. The insurance folks are wrong and Larry should get insurance? The disability folks are wrong and I should receive almost six years of retroactive 100% disability?

Truth is that MDS is leukemia and is caused by exposure to Agent Orange. Larry should be 100% T&P and be GIVEN life insurance because of his disability.

If I may spell it out once more, for insurance purposes the VA is making medical decisions. For disability the VA is making financial decisions.

Veteran's Affairs certainly should not be allowed to have it both ways.

Mary Ellen would you please show this, email and letter, to Senator Akaka. Talib would you please make sure the Representative Filner sees this? Talib, if you would be so kind, thank Rep. Filner for his most encouraging letter please. Ellis run this by your friend?

It is attached in PDF format.

No matter how this turns out for me, I will continue to fight, until my last breath, for my fellow Vietnam veterans with bone marrow failure disease. I have a few Vietnam veterans on my BCC list that have received 100% T&P but are unwilling to step into the fray for fear of retaliation by the VA. Shame on them or shame on the VA?


I will continue to fight because it is the RIGHT thing to do!

"It is foolish and wrong to mourn the men who died.
Rather we should thank God that such men lived."
- George S. Patton, Jr.



"A simple way to take measure of a country is to look at how many want in... And how many want out."

Only two defining forces have ever offered to die for you:

1. Jesus Christ
2. The American G. I.

One died for your soul, the other for your freedom.

A veteran - whether active duty, retired, or national guard or reserve - is someone who, at one point in their life, wrote a blank check made payable to "The United States of America", for an amount of "up to and including my life."

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

Bob Macfarlane
Thu Aug 5, 2010, 05:24 PM
Perhaps OLD TIMES DISEASE in addition to diabetes and MDS?

Bob Macfarlane
Sun Oct 31, 2010, 06:32 PM
Have been working for the past month or so on my statement for the Institute of Medicine meeting in Chicago on the 4th of November.

The outcome of that effort has been an 18 page document on how Agent Orange is behind our MDS. A further outcome has been my beginning to fully understand that Agent Orange might not be the sole cause of our MDS. The first written page of the statement will explain that to you.

There are 40+ footnotes which when expanded are between 200-300 pages of documentation. I will be burning them to CD starting tomorrow afternoon and if you want to email me a snail address I will send you the total package.

Email me at AirAmrka@aol.com and anyone that ask how much they cost will not be allowed to have one.

You will need access to Microsoft Office 2007 or later to use the document and open the links.

triumphe64
Sun Oct 31, 2010, 07:52 PM
My Viet Nam vet friend gets VA benefits for his type 2 diabetes. I have recently heard from a VA doctor that guys now get benefits for Parkinson's Disease. I guess they have bigger lobbies, and we only have you. Thanks for your hard work.

Bob Macfarlane
Fri Nov 5, 2010, 10:11 AM
Just back from testimony before the IOM / Agent Orange Committee in Chicago. Personal opinion? It went VERY, VERY well and I would not be surprised to see the IOM issue a statement by January, 2011 declaring that MDS should be considered presumptive to AO exposure and should be rated as LEUKEMIA.

Attached is the PDF version of my statement. There are 90+ references and If you would like a copy on CD email me your snail address to AirAmrka@aol.com

My honest impression was that the committee could not believe that the Department of Veterans' Affairs was so arbitrary in their decision making in the face of scientific evidence.

PDF did not upload because I have exceeded my quota. Go ahead and email me and I'll send you the complete package. Video of the three presentations about MDS will be on my Facebook page by tomorrow.

Stephanie Hamm
Sat Nov 6, 2010, 12:17 AM
Bob,

Can you invite me to your Facebook page. I am on Facebook as Stephanie Dillon Hamm or Stephanie Hamm.

Thanks for all of you efforts. I will email you for a copy of your testimony.

simplyamom
Sun Dec 5, 2010, 09:59 PM
Hello Bob, I found you on another web site and I am seeking any help that you can give me , please. My son was born in 1976 with trisomy 8 syndrome. I have recently been reading that there might be a link to his dad serving in Vietnam, 1968-1970 where he was exposed to AO. Our son has so many serious health problems,if AO is the reason for his suffering , I need to bring a case against the goverment on behalf of my son. Do you know if there is a class action open?
Any help will be appreciated. Respectfully yours.

RETAIRFORCEMAN
Tue Dec 28, 2010, 01:05 AM
I wanted to let all of the forum members know that I prepared, mixed and hand sprayed agent orange herbicides on Andersen AFB Guam and off base air force fuels facilities for ten years from sept 1968 to Jun 1978. I have ischemic heart disease, first exposure diseases of chloracne and sterility upon first handling the herbicides, autoimmune diseases, rheumatoid arthritis, spinal stenosis, anklylosing spondiolitis, osteoporosis, psorasis, peripheral neuropathy, and possible other neurological disorders...with paralysis of my left side...arteries dissected and torn during angioplasty rotorooter..etc..contact me at retairforceman@aol.com and contact web master of http://www.guamagentorange.info/home we have requested a DOD IG INVESTIGATION why the truth was not told to us. I have Air Force documentation and eye witnesses of when I sprayed agent orange on Guam

RETAIRFORCEMAN
Tue Dec 28, 2010, 11:38 AM
GERRY T., PLEASE CONTACT DOUG KELLEY AT ourrose2002@sbcglobal.net .....He sent me an email and wished to talk to you about Guam and Agent Orange herbicides which he also was exposed to. He knows about me handling and handspraying it there. He worked in base supply and did inventory on the drums of AO at Andersen AFB.


From Doug Kelley,

LEROY SEND ME THIS MANS E-MAIL AND I WELL EXPLAIN HIM THE FAXS OF LIFE DOUG

--- On Tue, 12/28/10, RetAirForceMan@aol.com <RetAirForceMan@aol.com> wrote:


From: RetAirForceMan@aol.com <RetAirForceMan@aol.com>
Subject: this guy doesn't even know he was exposed to AO on Guam...oh my!
To: rstanton@stjoelive.com, MPaxton@nas.edu, ourrose2002@sbcglobal.net, josephmchale@ymail.com, W6stringer@aol.com
Date: Tuesday, December 28, 2010, 4:53 AM


Gerry T.
Member Join Date: Jul 2010
Location: Texas
Posts: 2

VA Benefits

--------------------------------------------------------------------------------

I may be a little slow but for 20 yrs I did my job and retired in 82. Since then I have been dx first with type 2 Diabetes, then Heart Problems, and two years ago "Pre Lukemia" now they say MDS unclassified... My question is: I was never exposed to Chemical Agents that I know of. Never spent time in Viet Nam.. the closet was Guam.. Do I put in a claim to the VA to see if it can be determine if any of my assignments exposed me to chemical hazards... Thanks GT

Bob Macfarlane
Tue Mar 29, 2011, 07:18 AM
I doubt they will print this but it was just sent to the editor of the Chicago Tribune.

http://www.chicagotribune.com/health/agentorange/

Your series on Agent Orange was very interesting and I wish I had known about it earlier.

Betrayed is hardly the word we use to describe ourselves. I have myelodysplastic syndrome (bone marrow cancer) caused by Agent Orange.

That it not my opinion, that is the ruling of the Board of Veterans' Appeals in Washington DC. Yet, the Department of Veterans' Affairs found a lung cancer expert, Dr. Michael Kelly, at Duke University to opine that mine is not malignant. Result? No compensation for an incurable and fatal form of cancer closely related to Multiple Myeloma.

That it is cancer is the opinion of the VAST majority of the medical community involved with the disease – just today an expert on MDS from Mayo Clinic told me that “Of course, it is cancer and there is no such thing as a benign cancer.” A MDS expert from Harvard Medical told me "To say it is not malignant is bizarre." A MDS expert from John Hopkins has told me "They are playing word games." Lest I forget, it is also the opinion of the National Cancer Institute and the American Society of Hematology that MDS is cancer.

Your article (Part 2 'Insult to injury') refers to disability claims as a “convoluted” process – that makes me laugh. The process is more akin to Alice falling into the rabbit hole or a Steven King novel. Nothing about it is real. I see now though that my biggest sin was to have gotten this disease and not have gone to West Point with Secretary Shinseki.

Vietnam veterans are 14,000+% more likely to get MDS than the general population (FOIA report from the VA) and the VA continues to delay, deny and hope we die (they also lie.) Why? Disability accrues to the veteran and not our survivors. We have the audacity to die and the VA wins.



Bob Macfarlane

Neil Cuadra
Tue Mar 29, 2011, 11:46 AM
At the Veteran's discussion and workshop at the Phoenix AA&MDSIF conference last Saturday we heard from Vietnam-era vets, not just with MDS but with aplastic anemia, and we heard about the vets exposed to Agent Orange where it was being prepared and stored, not just where it was applied in Vietnam. We also heard how Agent Orange (contaminated with dioxin) was mixed with chemicals like benzene, also linked to bone marrow failure, and how barrels used for Agent Orange were reused for water storage without sterilization (that's also mentioned in the Chicago Tribune article).

The frustration with the V.A. continues. For vets who have not yet applied, the advice we heard was to make the initial application as strong as possible, with all supporting evidence provided up front. That's proven to be more successful than waiting to be rejected and providing more evidence in an appeal. Of course that doesn't help those who area already stuck in this process, some for years. And approvals and rejections still seem haphazard, with one vet approved for benefits while another with the same exposure at the same location and time with the same resulting illness being rejected.

The next update to the "presumptive illnesses" list will be in 2012 and it's still going to be an uphill battle to get MDS added.

Bob Macfarlane
Tue Mar 29, 2011, 07:52 PM
Neil,

I truly expect the Institute of Medicine to recommend to the VA that MDS / AML, if not all bone marrow failure diseases, be added to the presumptive list. I expect that to be much sooner than later.

I also requested of the IOM that they specifically define MDS as what it is, a cancer, so that the VA would have no wiggle room.

Bob Macfarlane
Sat May 21, 2011, 07:39 AM
If this does not turn you stomach, nothing will.

Same disease, same cause. Approval from the VA? In a matter of days!

The difference?

http://www.chicagotribune.com/health/agentorange/chi-agent-orange2-dec06,0,2356181.story

He went to West Point with Shinseki.

Bob Macfarlane
Thu Jun 23, 2011, 12:22 PM
:):):):)
Small victory but you win ball games one run at a time.

Hi Bob-

Sue got a call today from someone at the Tampa VA. He told her he was ordered my Scty. Shinseki to pull Paul's file, hand deliver it to his doctors for updates and then Shinseki would review the file. The Tampa rep. told Sue they would be contacting her within 7-10 days with a decision! She asked why they decided to do this & he said it was a result of the letter I e-mailed to Shinseki! Wow! Thank you, Bob, for suggesting I write him. I really can't believe it worked.

The Tampa guy seemed a bit shocked that he had been ordered to do this, telling Sue it was "being fast-tracked & it was totally against protocol & that these things normally take years."

Sue told the Tampa rep. that they were going to Moffat tomorrow to find out if Paul was still eligible for the transplant. I hope that doesn't muddy things up for the disability benefits decision...but of course Sue & Paul would give anything for a cure. Paul has been a bit better lately; he hasn't needed blood transfusions for a week & a half. He still has the pnemonia & has to be transfused with anti-fungals for that, though.

Sue said she'd call you if & when they get the disability approval. Paul says he'll believe it when he sees it.

I couldn't stop smiling today. Thanks again, Bob!

Diane

Bob Macfarlane
Wed Jun 29, 2011, 03:46 PM
Finally a doctor that is willing to call it what it is. Words do have meaning to some.

MDS, Blood Cancer...

http://www.sciencedaily.com/releases/2010/04/100426182000.htm

Bob Macfarlane
Sun Jul 3, 2011, 10:49 AM
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

Bob Macfarlane
Sun Jul 3, 2011, 10:55 AM
This should be of interest to those of you are war with the VA:

http://www.newswise.com/articles/congressmans-death-underscores-need-for-research-into-blood-cancer-syndrome

Remember, even if you win at the region or before the BVA, they are going to try to call MDS anemia. Anemia unless you went to West Point with Shinseki or are a congressman.

In addition to Matsui, other notable public figures who have died from MDS include Congressmen Joseph Moakley (D-MA), former presidential candidate and Congressman Paul Tsongas (D-MA), and scientist Carl Sagan.

triumphe64
Mon Jul 4, 2011, 01:50 PM
Here is another article in Blood claiming it is underreported.

http://bloodjournal.hematologylibrary.org/content/117/26/7121.full

Bob Macfarlane
Fri Jul 15, 2011, 11:15 AM
Robert James Macfarlane, Sr.
16611 SW 49th Street
Southwest Ranches, FL 33331-1325
954-232-7190
AirAmrka@aol.com


June 18, 2011

National Cancer Institute
Public Inquiries Office, Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322

Dear Sir/Madam,

From your website http://www.seer.cancer.gov/about/ I read that:

SEER collects data on cancer (emphasis mine) cases from various locations and sources throughout the United States. Data collection began in 1973 with a limited amount of registries and continues to expand to include even more areas and demographics today.

Would you be so kind to explain to me, in writing and over signature, why the National Cancer Institute collects data on Myelodysplastic Syndrome? Certain government agencies only consider MDS to be a pesky form of anemia, which might turn into cancer.

Yet, the majority of the medical community considers not only AML but also MDS to be a diagnosis of cancer.

Words do have meaning and I would like to know if MDS (not AML) should be considered anemia or cancer. Would also like to know, if it is not cancer, why is the NCI using taxpayer money to collect data on anemia?

You may forego the explanation of “pre-leukemia.” That term is one of the biggest disservices ever placed upon MDS patients. It has allowed insurance companies and government agencies to deny coverage and/or compensation for years.

If necessary, just notify me and I will be happy to submit this as a Freedom of Information Act request.

Respectfully,



Robert J. Macfarlane
RCMD-RS

Bob Macfarlane
Fri Jul 15, 2011, 11:19 AM
07/14/11_56618PIQ

Thank you for your letter to the National Cancer Institute (NCI) regarding myelodysplastic syndromes (MDS). In your letter, you asked whether MDS should be considered anemia or cancer. You also asked why the NCI collects data on MDS if it is not considered cancer. The NCI, a component of the National Institutes of Health (NIH), is the Nation's principal agency for cancer research. The NCI is responsible for coordinating the National Cancer Program and for maintaining our momentum in cancer research. We hope you will understand that, as a Federal Government research agency, the NCI is not involved in the classification of diseases. However, we can offer information that you may find useful.

MDS, also called preleukemia or smoldering leukemia, are a group of diseases in which the bone marrow does not make enough healthy blood cells. MDS transform to acute myeloid leukemia (AML) in about 30 percent of patients after various intervals from diagnosis and at variable rates. For information about MDS, you may wish to refer to the "PDQ® Treatment Summary for Health Professionals on Myelodysplastic Syndromes." This summary of information from PDQ, the NCI's comprehensive cancer information database, provides information about treatment for myelodysplastic syndromes. This resource is available at http://www.cancer.gov/cancertopics/pdq/treatment/myelodysplastic/HealthProfessional/AllPages.

In your letter, you asked why the NCI's Surveillance, Epidemiology, and End Results (SEER) program collects data on MDS. As part of the NCI's mission to develop effective prevention, early detection, and treatment approaches for cancer, the NCI is interested in precancerous conditions and other risk factors that may lead to cancer.

According to the SEER program, in most cancer registries, the reportable tumors are those that are listed in the International Classification of Diseases for Oncology, Third Edition (ICD-O-3), which have a behavior defined as in situ or invasive. Tumors that are reportable to SEER include those that are classified as in situ and malignant. This information can be found on the SEER Behavior Recode for Analysis Web page at http://seer.cancer.gov/behavrecode/. According to the "SEER Cancer Statistics Review, 1975-2008," myelodysplastic syndromes and chronic myeloproliferative disorders were reclassified from nonmalignant to malignant in the ICD-O-3. These diagnoses became reportable for cases diagnosed in 2001, when ICD-O-3 went into effect. This information can be found in section 30 of the SEER CSR at http://seer.cancer.gov/csr/1975_2008/results_merged/sect_30_mds.pdf.

To view the PDF above, you must have Adobe® Reader®. If you do not have this software, a free download is available at http://get.adobe.com/reader.

If you have additional questions regarding SEER's MDS data, you may wish to contact the SEER program directly. SEER staff can be reached at:

Address: Cancer Statistics Branch
Surveillance Research Program
Division of Cancer Control and Population Sciences
National Cancer Institute
Suite 504, MSC 8316
6116 Executive Boulevard
Bethesda, MD 20892-8316
Telephone: 301-496-8510
Fax: 301-496-9949
E-mail: seerweb@imsweb.com
Web site: http://seer.cancer.gov

Thank you for writing.


Deborah Pearson, R.N., M.P.H.
Chief, Public Inquiries Office
Cancer Information Service
National Cancer Institute

Bob Macfarlane
Fri Jul 15, 2011, 11:30 AM
I very specifically asked if MDS should be considered anemia or cancer. In the selected paragraph from your response, it seems that while "the NCI is not involved in the classification of diseases" you are indicating that MDS is a precancerous condition . Where does that classification come from?

Is it anemia, pre-cancer or cancer? If you cannot answer that question, who can answer?

Please supply a straight forward answer this time --- Vietnam veterans dying of MDS/AML do not have time for a slow dance or double speak. My letter was mailed to you on June 18, 2011 --- 2011 not 1984.

Allow me to supply you with a few facts before you blow me off again with bureaucratic minutia:

From the National Cancer Institute
http://www.cancer.gov/cancertopics/types/myeloproliferative

Definition of myeloproliferative disorders*: A group of slow growing blood cancers, including chronic myelogenous leukemia, in which large numbers of abnormal red blood cells, white blood cells, or platelets grow and spread in the bone marrow and the peripheral blood.

*NCI listings of myeloproliferative disorders contains:
http://www.cancer.gov/cancertopics/types/what-are-myeloproliferative-disorders

Myelodysplastic Syndromes Includes refractory anemia, refractory anemia with excess blasts, refractory anemia with ringed sideroblasts, refractory cytopenia with multilineage dysplasia, unclassifiable myelodysplastic syndrome, and myelodysplastic syndrome associated with del (5q).

American Cancer Society

“Definition of myeloproliferative disorders: A group of slow growing blood cancers, including chronic myelogenous leukemia, in which large numbers of abnormal red blood cells, white blood cells, or platelets grow and spread in the bone marrow and the peripheral blood. “

Leukemia-Lymphoma Society (LLS)
http://www.lls.org/diseaseinformation/myelodysplasticsyndromes/

“MDS is a diagnosis of cancer.”
“Myelodysplastic syndromes (MDS) is a term that is used to describe a group of cancers of the blood and marrow. “

Dana-Farber Cancer Institute
http://www.newswise.com/articles/congressmans-death-underscores-need-for-research-into-blood-cancer-syndrome

Newswise — The recent death of Robert Matsui "" the 14-term Congressman from California who succumbed to myelodysplastic syndrome on Jan. 1 at the age of 63 "" has placed a national spotlight on a group of poorly understood and often incurable blood cancers.

Journal of Clinical Oncology
http://www.sciencedaily.com/releases/2010/04/100426182000.htm

ScienceDaily (Apr. 27, 2010) — Myelodysplastic syndromes (MDS) -- a group of serious blood cancers

MDS UK Patient Support Group

“Blood cancers cover a number of very rare conditions including: myelodysplastic syndromes (MDS), multiple myeloma (MM), acute myeloid leukaemia (AML), chronic myelo-monocytic leukaemia (CMMoL), chronic myeloid leukaemia (CML), chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), Hodgkin's lymphoma (HL) and non-Hodgkin's lymphoma (NHL).”

Dr. Guillermo Garcia-Manero, Chief, Section of Myelodysplastic Syndromes, MD Anderson Cancer Center
http://www.sciencedaily.com/releases/2007/12/071221161939.htm

“A new scoring system for a form of leukemia known as myelodysplastic syndrome (MDS). . .”

Marlene
Fri Jul 22, 2011, 07:51 PM
Amendment to reduce Agent Orange claims.....


http://www.sacbee.com/2011/07/20/3783467/sen-coburn-to-vietnam-veterans.html

Bob Macfarlane
Sat Jul 23, 2011, 11:43 AM
Many may wonder why I am so adamant about the definition of MDS. It is because; even if you convince Veterans’ Affairs (via the Board of Veterans’ Appeals) that your condition was caused by exposure to Agent Orange, the Regional Office will classify you under anemia and deny compensation. This is a delaying tactic on their part to make you wait years to get before the BVA again.

Never forget that they will “Delay You, Lie to Deny You and Wait for you to Die.”

Lie is a harsh word but that is exactly what they will do with “plausible deniability” - - - in my personal case by getting a doctor to opine that MDS is not a malignancy unless you are darn near dead. Long ago I wrote him and told him that I would find the truth and he should - - -

“Never kick a tiger in the a$$ unless you have a darn good plan about what you are going to do with the teeth.”

This week I had the pleasure of telling him

“You should never pi$$ someone off that is smarter than you.”

07/21/11_56652PIQ

Your follow-up e-mail to Dr. Harold Varmus, Director of the National Cancer Institute (NCI), has been forwarded to this office for reply. Although disease classification is beyond the scope of the NCI’s mission, we are including information that you may find helpful.

According to the World Health Organization’s (WHO) “Classification of Tumours of Haematopoietic and Lymphoid Tissues,” MDS is recognized as a clonal neoplasm, meaning cancer. This is considered to be the definitive classification used on a worldwide basis. For more information, we have attached a portion of this book for you. The complete citation for this book is as follows:

Swerdlow SH, Campo E, Harris NL, et al. (2008). WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues. Lyon, France, International Agency for Research on Cancer.

More information about this topic is available in the following review article:

Vardiman JW, Thiele J, Arber DA, et al. (2009). The 2008 revision of the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia: Rationale and important changes. Blood 114(5):937-951.

Thank you for writing.


Deborah Pearson, R.N., M.P.H.
Chief, Public Inquiries Office
Cancer Information Service
National Cancer Institute

With great pleasure I copied the doctor on this::):):):):)

Kudos to the NCI and WHO!

Dr. Kelly, Duke University, opined to the VA that my MDS is not malignant. Nobel Prize in Medicine to the good doctor for his discovery of a benign form of cancer. Benign not in remission because I am treated weekly. Kelly, extract your head from where the sun don't shine.

Before you try to crab away on this Kelly, my myelodysplastic syndrome we diagnosed by the Miami Veterans' Affairs Hospital. Feel free to contact Dr. Lucy Chua, my treating hematologist / oncologist, at the Miami VA Hospital and tell she doesn't know what she is doing.

Then again it might not be her that doesn't know what she is doing.

Then again I do have a copy of a letter sent to my United States Senator that states clearly "Veterans' Affairs does not consider diseases the same as the medical community." Duhhhhh?

Bob Macfarlane
Sun Jul 24, 2011, 04:14 PM
The number one question I am asked concerns what a nexus letter should look like, so I decided since my orginal was a bad scan I would re-entire it and share with you. The attachment contains all (21) of the footnotes that he used. I was successful before the BVA because of this letter. The BVA issued their decision without my ever appearing before them.

NORTHWEST ONCOLOGY AND HEMATOLOGY ASSOCIATES

DIPLOMATES AMERICAN BOARD OF INTERNAL MEDICINE
MEDICAL ONCOLOGY AND HEMATOLOGY

NEAL J. WEINRAB, M.D., F.A.C.P.
STEVEN WEISS, M.D.
TIMOTHY ALIFF, M.D.

April 24, 2006

To whom it may concern:

This letter is written on behalf of Mr. Robert Macfarlane a patient, whom I have evaluated for a diagnosis of myelodysplastic syndrome. I am a medical board certified oncologist currently in practice in Florida. My training in the field of oncology includes significant research and clinical experience in the diagnosis of hematologic malignancies.

Mr. Macfarlane is a 61-year old gentleman who was referred for hematologic evaluation following a several year history of macrocytic anemia. Ultimate work-up for this condition included a bone marrow examination which was performed on July 6, 2005, and led to a diagnosis of myelodysplastic syndrome (MDS) as the etiology of his macrocytic anemia. The key aspect of his bone marrow findings include a hyprocellular marrow, dyserythropiesis , dysmegakaryopiesis, and increased ringed sideroblasts. Because of the prolonged nature of his macrocytic anemia, it is presumed that Mr. Macfarlane’s case of MDS evolved well before he reached 60 years of age.

Myelodysplastic syndrome is generally an idiopathic disease of the elderly and rarely occurs in patients under 60 years of age. In patients like Mr. Macfarlane who develop early onset MDS , their disease is usually due to prior exposure to mutagenic agents, either through treatment with chemotherapy or through environmental/occupational exposure to genotoxins, particularly the aromatic hydrocarbons. Mr. Macfarlane has never received chemotherapy but from an occupational standpoint is it clear that Mr. Macfarlane was exposed to 2,3,7,8-tetrachlorodibenzo-p-dixon (TCDD), a known contaminant of herbicides while employed by the United States in Vietnam War. It is my medical opinion that Mr. Macfarlane’s myelodysplastic syndrome is casually related to exposure to TCDD during his military service in Vietnam on the basis of both epidemiologic and mechanistic data.

From a epidemiologic standpoint, it is established that TCDD exposure is causally related to a variety of clonal bone marrow diseases. In fact, many of these malignancies are already presumed by the Veterans’ Administration to be related to Agent Orange exposure and include all forms of non-Hodgkin’s lymphomas, chronic lymphocytic leukemia, and multiple myeloma. An increased risk has been documented in agricultural workers , an occupation in which exposure to dioxin-contaminated herbicides and pesticides is assumed. Other studies have linked exposure to benzene to elevated risk for MDS. As will be described below, benzene and TCDD are known to exert their toxic effects via common molecular pathways. Further epidemiologic evidence derives from a 1976 industrial accident in Seveso, Italy, in which several thousand residents were exposed to TCDD. Studies of this population have revealed a probable relationship between TCDD exposure and an increased risk of acute myeloid leukemia. Because acute myeloid leukemia (AML) may arise from previously unrecognized antecedent MDS, this finding suggests the possibility that a portion of the increased risk of AML in the residents of Seveso may be due to TCDD-mediated MDS. In conclusion, available epidemiologic data support the possibility of a connection between TCDD exposure and the pathogenesis of MDS.

Beyond the epidemiologic findings, the identification of characterization of the aryl hydrocarbon receptor have provided substantial mechanistic evidence linking TCDD to the pathogenesis if malignant disease. In fact, this evidence was the basis for the 1997 decision of the International Agency for Research on Cancer (a division of the World Health Organization) to upgrade its categorization of TCDD from “possibly carcinogenic to humans” (category 2B) to “known to be carcinogenic to humans” (category 1). The aryl hydrocarbon receptor (AhR) is a highly conserved nuclear receptor and transcription factor stimulated by TCDD, which leads to the induction and suppression of numerous genes. Mutagenic/carcinogenic events occurring downstream of AhR stimulation include changes in cell signaling proteins, calcium mobilization, growth factors, oncogenes, and cell proteins. Members of aromatic hydrocarbon family known to activate AhR include benzene, benzene metabolites, and TCDD (an aromatic hydrocarbon containing two benzene rings). Recent in vivo research molecular epidemiology research involving the victims of the Seveso accident has confirmed that TCDD exposure leads to predictable and consistent changes in the AhR pathway.

This growing body of mechanistic data regarding the aryl hydrocarbon receptor supports the presumption that aryl hydrocarbons, which include benzene and TCDD, act via a final common pathway in exerting their mutagenic effects. Because epidemiological studies correlate benzene exposure and the development of MDS (see foot notes 7-8), it is therefore plausible that TCDD exposure should carry identical risks. In the assessment of Mr. Macfarlane’s case of MDS, it is important to note that it was very early onset, which previously described suggests its relationship to toxic exposures. It is also important to note that with the exception of to TCDD during his military service in the Vietnam War, Mr. Macfarlane has not been known to exposed to any other mutagenic toxins which may lead to MDS, including no know exposure to benzene, chemotherapy or radiation, or even cigarette smoking. Accordingly, it is my firm medical opinion that when Mr. Macfarlane’s medical condition and history are viewed in totality, it is unlikely that anything other than TCDD exposure during his service in Vietnam caused his case of myelodysplastic syndrome.

Sincerely,



Timothy Aliff, M.D.


==============================

Click here to download this letter as a PDF

==============================

captpgs
Mon Aug 15, 2011, 09:36 PM
Bob, thanks so much for talking with me. I got the same message when I tried to send an e-mail to your wife.

I am a new member and it has been such a blessing to find this website. My husband died in March from Myelofibrosis which had progressed into AML. He was in Vietnam from 1969 to 1970. He was also stationed at New River and received training at Camp Lejeune. All information is so helpful.


The number one question I am asked concerns what a nexus letter should look like, so I decided since my orginal was a bad scan I would re-entire it and share with you. The attachment contains all (21) of the footnotes that he used. I was successful before the BVA because of this letter. The BVA issued their decision without my ever appearing before them.

NORTHWEST ONCOLOGY AND HEMATOLOGY ASSOCIATES

DIPLOMATES AMERICAN BOARD OF INTERNAL MEDICINE
MEDICAL ONCOLOGY AND HEMATOLOGY

NEAL J. WEINRAB, M.D., F.A.C.P.
STEVEN WEISS, M.D.
TIMOTHY ALIFF, M.D.

April 24, 2006

To whom it may concern:

This letter is written on behalf of Mr. Robert Macfarlane a patient, whom I have evaluated for a diagnosis of myelodysplastic syndrome. I am a medical board certified oncologist currently in practice in Florida. My training in the field of oncology includes significant research and clinical experience in the diagnosis of hematologic malignancies.

Mr. Macfarlane is a 61-year old gentleman who was referred for hematologic evaluation following a several year history of macrocytic anemia. Ultimate work-up for this condition included a bone marrow examination which was performed on July 6, 2005, and led to a diagnosis of myelodysplastic syndrome (MDS) as the etiology of his macrocytic anemia. The key aspect of his bone marrow findings include a hyprocellular marrow, dyserythropiesis , dysmegakaryopiesis, and increased ringed sideroblasts. Because of the prolonged nature of his macrocytic anemia, it is presumed that Mr. Macfarlane’s case of MDS evolved well before he reached 60 years of age.

Myelodysplastic syndrome is generally an idiopathic disease of the elderly and rarely occurs in patients under 60 years of age. In patients like Mr. Macfarlane who develop early onset MDS , their disease is usually due to prior exposure to mutagenic agents, either through treatment with chemotherapy or through environmental/occupational exposure to genotoxins, particularly the aromatic hydrocarbons. Mr. Macfarlane has never received chemotherapy but from an occupational standpoint is it clear that Mr. Macfarlane was exposed to 2,3,7,8-tetrachlorodibenzo-p-dixon (TCDD), a known contaminant of herbicides while employed by the United States in Vietnam War. It is my medical opinion that Mr. Macfarlane’s myelodysplastic syndrome is casually related to exposure to TCDD during his military service in Vietnam on the basis of both epidemiologic and mechanistic data.

From a epidemiologic standpoint, it is established that TCDD exposure is causally related to a variety of clonal bone marrow diseases. In fact, many of these malignancies are already presumed by the Veterans’ Administration to be related to Agent Orange exposure and include all forms of non-Hodgkin’s lymphomas, chronic lymphocytic leukemia, and multiple myeloma. An increased risk has been documented in agricultural workers , an occupation in which exposure to dioxin-contaminated herbicides and pesticides is assumed. Other studies have linked exposure to benzene to elevated risk for MDS. As will be described below, benzene and TCDD are known to exert their toxic effects via common molecular pathways. Further epidemiologic evidence derives from a 1976 industrial accident in Seveso, Italy, in which several thousand residents were exposed to TCDD. Studies of this population have revealed a probable relationship between TCDD exposure and an increased risk of acute myeloid leukemia. Because acute myeloid leukemia (AML) may arise from previously unrecognized antecedent MDS, this finding suggests the possibility that a portion of the increased risk of AML in the residents of Seveso may be due to TCDD-mediated MDS. In conclusion, available epidemiologic data support the possibility of a connection between TCDD exposure and the pathogenesis of MDS.

Beyond the epidemiologic findings, the identification of characterization of the aryl hydrocarbon receptor have provided substantial mechanistic evidence linking TCDD to the pathogenesis if malignant disease. In fact, this evidence was the basis for the 1997 decision of the International Agency for Research on Cancer (a division of the World Health Organization) to upgrade its categorization of TCDD from “possibly carcinogenic to humans” (category 2B) to “known to be carcinogenic to humans” (category 1). The aryl hydrocarbon receptor (AhR) is a highly conserved nuclear receptor and transcription factor stimulated by TCDD, which leads to the induction and suppression of numerous genes. Mutagenic/carcinogenic events occurring downstream of AhR stimulation include changes in cell signaling proteins, calcium mobilization, growth factors, oncogenes, and cell proteins. Members of aromatic hydrocarbon family known to activate AhR include benzene, benzene metabolites, and TCDD (an aromatic hydrocarbon containing two benzene rings). Recent in vivo research molecular epidemiology research involving the victims of the Seveso accident has confirmed that TCDD exposure leads to predictable and consistent changes in the AhR pathway.

This growing body of mechanistic data regarding the aryl hydrocarbon receptor supports the presumption that aryl hydrocarbons, which include benzene and TCDD, act via a final common pathway in exerting their mutagenic effects. Because epidemiological studies correlate benzene exposure and the development of MDS (see foot notes 7-8), it is therefore plausible that TCDD exposure should carry identical risks. In the assessment of Mr. Macfarlane’s case of MDS, it is important to note that it was very early onset, which previously described suggests its relationship to toxic exposures. It is also important to note that with the exception of to TCDD during his military service in the Vietnam War, Mr. Macfarlane has not been known to exposed to any other mutagenic toxins which may lead to MDS, including no know exposure to benzene, chemotherapy or radiation, or even cigarette smoking. Accordingly, it is my firm medical opinion that when Mr. Macfarlane’s medical condition and history are viewed in totality, it is unlikely that anything other than TCDD exposure during his service in Vietnam caused his case of myelodysplastic syndrome.

Sincerely,



Timothy Aliff, M.D.


==============================

Click here to download this letter as a PDF

==============================

Bob Macfarlane
Mon Aug 15, 2011, 10:48 PM
I actually am no one special. Somehow I seem to have become a spokeperson for the 'Nam vets and widows in our battle to get Veterans' Affairs to do the right thing.

Anyone that has ever spoken with me has heard the same thing: "You offer to compensate me and I won't help you." Do believe someone heard that just today.

As God gives me strength to continue this fight, I shall do so. Many ask why they haven't heard from the VA and my honest answer must be, "I don't know." I do know that should you give up THEY WILL WIN.

You vets will understand this and widows heard it more than once "I am sick and tired of being tired."

Worn out and weary but will continue this battle until my last breath and praise God that I have a son that intends to continue the war against the VA.

The VA kicked all of us in the ass without having a very well thoughtout plan about what to do with our teeth. They are the bureaucrats but the sleeping dragon has awoken.

Bob Macfarlane
Thu Sep 1, 2011, 01:35 PM
Hi Jim,

I see no medical or ethical way they can deny the relationship between Agent Orange and bone marrow failure disease.

This is your government though and anything might come down in the report. They could actually ignore the issue completely. We may never know one way or the other what caused them to come to the conclusion that they will release.

Pray that the decision is based upon the facts and is not a decision that is based upon financial considerations. Or, a decision based upon their dislike of me. If they do decide for us, pray that the IOM tells the VA to stop treating our diseases as "pesky" forms of anemia.

It has been a long and wearing battle and I pray that the final decision gives you veterans the compensation that you so rightly deserve. I pray that the final decision gives widows and the families of those that did not make it to the end not only the compensation you have been denied but relief and peace knowing that your loved ones sacrifice will finally been recognized.

So many times I have read from the widows "My husband did not die in Vietnam, he died because of Vietnam" - - - that is so sad and truthful.

If we win, I personally am going to stick the report in the face of my doctor and tell her she and the other VA doctors should be ashamed for not having supported us overtly with the VA.

Win or lose, there is no way I could ever possibly adequately thank Judy Karp, David Steensma, Ruben Mesa or Mikkael Sekeres.

In my very first correspondence with Judy in 2009, she wrote back and said "If you are "tilting at windmills," then so am I -- and it is a windmill that is very much worth the effort."

David wrote in 2010 "Thank you for your history of service to our country" he was the first to wake me up to the fact that what we are dealing with is leukemia.

Ruben wrote " I respect and honor your service. I think its a travesty you are being given such a run-around."

Mikkael has written directly to Secretary Shinseki for me, as have the others.

There is Sherry Klumpp, DVM, from MD Anderson that has no dog in the fight. Sherry has been there to give me swift pickup anytime I need it. Sherry is in her own war with MDS.

Special thanks to the several hundred veterans and widows that have somehow managed to put up with the ranting and raving of this maniac through the years. Some of you going back as far as 2004.

We have run the race, we have fought the good fight and we have kept the faith - - - it is now time for the IOM and this nation to be faithful to our honorable service.

Love and great respect to all of you,

Bob



--------------------------------------------------------------------------------

From: Paxton, Mary [mailto:MPaxton@nas.edu]
Sent: Monday, August 29, 2011 1:49 PM
To: 'jet1xx@windstream.net'
Subject: RE: agent orange



Yes, its release is planned for the end of September.





Mary Burr Paxton, PhD, DABT
Senior Program Officer
Board on the Health of Select Populations
Institute of Medicine
Keck 871, 500 Fifth St., NW
Washington, DC 20001
(202) 334-1731
fax: (202) 334-2939



From: James Terpay [mailto:jet1xx@windstream.net]
Sent: Monday, August 29, 2011 9:37 AM
To: IOMWWW
Subject: agent orange



Is there going to be a bi-annual Agent Orange report this year?



Thanks



Jim Terpay

Sally C
Thu Sep 1, 2011, 03:05 PM
Hi Bob,
As the daughter of a WWII Army Medic (D-Day +6), the wife of a non-Veteran MDS patient, and as one who has the blessing of serving our brave Veterans as a volunteer at a local Veteran's Medical Center, I want to thank you for what you are doing for the Veterans who have contracted these horrible blood diseases through their service to our Country. Also I want to thank you for your service to our Country as well - and your continued service through your tireless work for these sick Veterans and their families.
I always appreciate reading your posts. Keep up the good work.
Thank you and God Bless,
Sally

Bob Macfarlane
Sun Sep 18, 2011, 11:23 AM
The days are counting down to the bi-annual report on Agent Orange that will be released by the Institute of Medicine.

If you are so inclined to do so, please pray that they finally right the injustice that has been visited upon Vietnam veterans and our widows by the VA.


It has been 318 days since John Huber, Larry Sauger and I testified before the IOM. 318 days and 124,020 fewer 'Nam vets for the VA to be worried about.

If the IOM caves on this (since when has right or wrong had anything to do with a decision:confused:, e.g., it is an oxymoron to say ethics in government:mad:), my next step will be to get through my next BVA hearing by asking them to deny me so that a claim can be filed before the Court of Appeals for Veterans' Claims. My understanding is that the CAVC is a Federal Court unrelated to the VA and if one wins there we all win.:)

Bob Macfarlane
Fri Sep 30, 2011, 02:59 AM
We Lost. The IOM Report Said Almost Nothing About MDS Or Any Other Bone Marrow Failure Disease.

As feared they totally ignored the evidence.

Said previously:

"I see no medical or ethical way they can deny the relationship between Agent Orange and bone marrow failure disease."

More later. At the moment I am just sick over the decision. 0300 hrs and I cannot sleep.

Marlene
Fri Sep 30, 2011, 09:17 AM
It saddens me to read this post. You've been fighting this battle for so long and were making progress.

Get some sleep :).

2mm
Sat Oct 1, 2011, 10:14 AM
Bob, I am so saddened to read your post. You have put so much effort into this fight, and those of us you represent have the deepest admiration for your courage and staying power. God bless you.

Lillian Mooradian, widow of COL. Moorad Mooradian. Vietnam 1969-1970 MDS diagnosed in 2005; progressed in 2009 to CML then AML.

Bob Macfarlane
Sat Oct 1, 2011, 12:54 PM
Don't lose all hope. We do have one last chance. Over this weekend I will be writing a letter to the "Veterans for Common Sense" and explaining to them what has occurred. My doing anything further through the VA would be like throwing "pearls before swine."

This time the report from the IOM was neither moral nor ethical - - - it looks like it was strictly a financial decision and most likely driven by input from the VA and this administration.

In the small book I am writing

"Delay You, Lie to Deny You and Wait for You to die - - -
What Audacity Veterans Must Have to Hope!"


I am just fleshing out the chapter on "Decisions in the Sunshine" about the secrecy and lack of transparency behind the IOM decision making process. They did not confer with a single one of our experts. Decision in a vacuum but it is a large report full of minutia needed to justify the wasting of your tax money. Not a single new presumptive disease for two years work.

I certainly encourage everyone to continue your fight until you get a definitive decision from the Board of Veterans Appeals. As you continue, I will be here to help you in any way I might. From the MDS claims heard before the BVA 25 have been approved and 41 denied and the rest were remanded back to the region.

Strange anomaly has occurred. There has historically been one of more BVA decisions on MDS concerning Agent Orange every month. Since September 1, 2010, there have only been three, one nay and two yeas. The decisions lag behind getting posted but they are current through July 2011.

There are a huge number of MDS / AML cases being treated by the VA for Vietnam Era veterans that have never been before the BVA. I believe I have said this before - - - I believe those cases were resolved at the region in favor of the veteran. Wrote to the VA Inspector General’s office yesterday to ask them to look into why my Freedom of Information Act request that could be used to prove that is being stonewalled by the Regional Offices.

To answer your concerns - - - I have not given up.

I will be asking “Veterans for Common Sense” to consider suing Veterans’ Affairs in federal court on behalf of our class of veterans - - - those with bone marrow failure diseases. If they will take it on, all of their work is done pro bono.

http://www.veteransforcommonsense.org/


Never kick a tiger in the ass without first having worked out a real good plan for the teeth.

mausmish
Sat Oct 1, 2011, 03:45 PM
Bob, I'm shocked and saddened by your news. You've fought so long and hard.

Bob Macfarlane
Tue Oct 4, 2011, 10:52 PM
Good late evening folks,

It seems like I never get to go to bed at a normal time. You guys certainly cost me a lot of sleep and trust me, I need the beauty rest.

As I have always promised you guys, I'll keep you posted at every turn. Just please don't read too much into this, but . . .

I just got off of a lengthy telephone conversation with Bob Handy, Chairman, Veterans United for Truth, in California.

He said that VUFT attorney's had said they didn't really want to take on another case BUT he was so interested in what our letter said, that he was emailing a copy to the attorney's tonight. He didn't want to wait until the morning.

You can read about the VUFT at and join them (it is free)

http://www.veteransunitedfortruth.org/

be sure to check out who is on their Board of Advisors!

I have always said that God is still in the miracle business! When He closes one door, He always opens another. If you want to walk on water, you need to take a chance and get out of the boat.

Special thanks to Larry Schuh for suggesting we contact these folks. Dinner is on me next time sir. Let me know your west coast of Florida schedule.

Looks like I might have to add a few chapters to the book!

Bob Macfarlane
Sat Oct 29, 2011, 11:20 AM
http://www.youtube.com/watch?v=r26_CSzk3Xw&feature=related always brings tears to my eyes.

My best guess is that we are going to see nothing out of Veterans United for the Truth. Bob Handy has told me on several occasions that I should contact the ACLU to see if we can generate interest there. Bob has also suggested contacting a number of law schools to see if they will take this on as a class project.

It is not that the VUFT doesn't want to help but the pro bono group that they work with put $7 million into the fight for PTSD. That group did not accept a single penny when it was initially settled and is now fighting the VA's rebuttal.

Bob also has not given me a definitive NO either. The lead attorney for the pro bono group has mesothelioma and has been out sick for some time now.

The group Veterans for Common Sense in Washington, DC has never acknowledged my request for assistance from them.

I was so discouraged with the IOM ruling that I have really done nothing since but that will be changing over the next few weeks. Someone will pick this up because we are right and the IOM decision contains no science. It was strictly a financial decision most likely driven by this administration.

The only reference to MDS / AML in the IOM report indicates that studies of these diseases have only been undertaken recently and there is no proof within the Veterans Affairs Office of a linkage between Agent Orange and our diseases. Talk about sleeping with the enemy?

http://books.nap.edu/openbook.php?record_id=13166&page=416 (bottom)
http://books.nap.edu/openbook.php?record_id=13166&page=417 (top)

Yet we proved them with Dr. Timothy Aliff’s Nexus Letter with references to twenty one scientific studies going back to 1994. They apparently did not care to look at anything other than what they received from the VA. They could not allow facts to get in the way of what they wanted to prove. That we are 14,000% more likely as a group to have the diseases meant nothing to them.

There have been over 8,000 views of this thread. Surely, one of you must have a contact within the ACLU or a law school? I am willing to travel at my expense to present our case in front of one or more of them. I need your help.

Dr. Mikkael Seekeres told me once that Aranesp would not last forever in keeping up my red count. Soon I am afraid I shall have to find out what else they have in their magic box of tricks.

Bob Macfarlane
Wed Nov 23, 2011, 07:20 PM
My turn to ask the question. I believe that today is the first time in all of my years with MDS that anyone has mentioned ferritin. My counts with this weeks test were 765 plasma and 85 serum.

Be concerned? If so why?

Lbrown
Thu Nov 24, 2011, 12:37 PM
My drs are not concerned with ferritin under 1000. With exjade, mine hovers around 1300. The goal is 1000, but it never seems to happen.

Deb

Bob Macfarlane
Thu Dec 15, 2011, 07:04 AM
Recently a couple of users have had a problem contacting me at AirAmrka@aol.com - - - that has been my email address since 1990 and I have no blocks on it. If you experience problems, check with your provider. You may also call me on my cell at 954-232-7190. I spend a lot of time in the woods hunting, so if you don't get an answer please leave a message.

triumphe64
Sat Jan 14, 2012, 02:35 PM
It looks like MDS hasn't made the cut yet.

http://www.dallasnews.com/news/local-news/20111123-list-of-diseases-linked-to-agent-orange-exposure-grows.ece?action=reregister

newfintexas
Wed Jun 20, 2012, 10:15 PM
Hi Bob ..my husband 56 was just diagnoses with mds...we are still waiting for the results of chomosome and another bone marrow biopsy result to know for sure the stage, score. He didn't serve in nam but was in the bomb dumps during that time as well as in the early 80s and has talked about handling the "outdated" bombs etc. They didn't have masks or special gear, just men with bare hands checking to see if the bombs were still secure, dust etc that spewed out coated them etc. Have you ever heard of any of this type of contact causing mds? We are just searching for a reason - maybe to be able to fight it or maybe just to keep our sanity.

Thanks for any input you or anyone else out there might have.

Florida Gal
Thu Jun 21, 2012, 03:55 PM
Bob, Thanks to you and all the other veterans for helping vets.

My deceased USAF spouse believed there were AO toxins and others stored at Clark AFP in the Phillipines in 1961-1963. He believed he was exposed there as well as in Vietnam and Thailand. He was approved by the VA for AO related benefits for diabetes and heart disease.

Our son, born at Clark AFB , beleives his many health related issues are related to AO exposure.

I have MDS, RCMD-RS with serious neutropenia.

Veterans,and some of their dependents, have illnesses related to AO which
need to be recognized and treated.

milliken2
Fri Jun 29, 2012, 10:32 PM
Bob;

Just wanted to let you know that I tried to email you with the information we discussed today - and it came back to me - saying that you were only accepting mail for certain addresses. Let's try to go in the back door - you email me - and I will reply - our email address is as follows:

millikenhouse@verizon.net

Thanks,
Beth

Florida Gal
Fri Jul 13, 2012, 12:29 PM
Bob,

As a military widow, I want to say thanks to you and all those fighting for veterans and remembering their survivors.

My USAF spouse died from Agent Orange related diabetes and coronary heart disease which were both compensated by the VA.

He was exposed to Agent Orange at Clark AFB in the Phillipines, Vietnam and Thailand.

His family was with him at Clark . I have MDS. One son, born at Clark, has serous helath problems, and the other son is getting disabiity benefits at an early age.

I pray that you receive the health care and compensation that you deserve.

Florida Gal

Don J
Fri Aug 24, 2012, 03:58 PM
I was diagnosed with MDS by the VA system 2 years ago, although i was not in Vietnam, i ruin a military gasoline station in Panama Canal Zone in l949 thru l951, and gasoline figures in MDS problems,.
Have filed a claim thru the VA just awaiting an answer, hopefully its a good one.

cathybee1
Sat Aug 25, 2012, 02:39 PM
My husband Bruce serviced planes in Thule, Greenland for the Air Force in the early 50's, and said sometimes he would be drenched in jet fuel. He believes that was the origin of his MDS.

Chirley
Sat Aug 25, 2012, 03:19 PM
I don't know if I'm supposed to do this, but here goes.

This is from an Australian Government website.

The following is a list of conditions for which compensation can be claimed under subsection 7(2) of the SRCA. *Conditions on the list were identified by a Doctor’s Advisory Committee as being related to F-111 deseal/reseal service, based on consideration of the results of the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP).
*
However, while the SHOAMP found an ‘association’ between F-111 work and the following conditions, this is not the same as saying that the work directly caused the condition.* (An ‘association’ is a weaker standard than a direct causative factor).* You may therefore find that your medical practitioner may have a differing view about causative factors.
*
The Military Rehabilitation and Compensation Commission invoked SRCA 7 (2) for the following conditions for F-111 deseal/reseal and other F-111 fuel tank maintenance personnel:
*
·****** Acquired colour vision deficiency
·****** Agoraphobia with panic disorder
·****** Anxiety
·****** Bi-polar affective disorder
·****** Bowel polyps
·****** Cauda equina syndrome
·****** Depression
·****** Diverticulitis
·****** Dysplastic naevus
·****** Eczema/dermatitis
·****** Erectile dysfunction
·****** Impaired cognition
·****** Irritable bowel disorder
·****** Liver disease
·****** Malignant neoplasms (ie, various forms of cancer)
·****** Memory loss
·****** Mixed connective tissue disease
·****** Myeloproliferative disorders
·****** Multiple sclerosis
·****** Neurogenic bladder
·****** Non-alcoholic toxic encephalopathy
·****** Pancreatic disease
·****** Panic disorders
·****** Parkinson’s disease
·****** Peripheral neuropathy
·****** Sarcoidosis
·****** Sleep disorders with neurological basis
·****** Systemic lupus erythematosus (SLE)
·****** Spinal muscular atrophy
·****** Ulcerative colitis/Crohn’s disease
·****** Vertigo
*
Invoking the SRCA subsection 7 (2) provisions for the above conditions means easier access to compensation for F-111 personnel.* But when making a claim for any of these conditions, please remember to include any medical evidence you have of a medical diagnosis.
*
For diagnostic purposes, International Classification of Disease (ICD) codes are used for the above conditions. This means that, if you are diagnosed with a condition above, it must meet the ICD code ascribed by the Doctor’s Advisory Committee for that condition.*

dave stewart
Sat Aug 25, 2012, 07:29 PM
I was in 1st recon from mar 67 thru feb 68, with 18 combat missions.
Many of the areas I was in was defoliated. I was totally healthy until 2009. when I had an accident, and a blood test showed abnormal red blood cells, I didn't have a bone marrow test until mid 2010 when I started having pain when I walked.

I had not been to a doctor for the prior 20 years, (I had no reason), great diet and exercise program.

So here is one more vietnam vet with mds.

milliken2
Sun Aug 26, 2012, 11:35 AM
Dave;
It is my husband who has the MDS - and is also a Viet Nam Vet. Did you file a claim with the V.A.? The more claims they get - then possibly they will listen. We filed at least 2 months ago, and haven't heard a thing - neither positive or negative. Good luck to you. I am just afraid that if they ever do decide in a positive fashion, Earl won't be alive to get any benefits from it, as he continues to get weaker and weaker by the day.

Good Luck to you.

Beth

gramous
Thu Oct 18, 2012, 04:32 PM
Hi everyone,

just posted on mds beacon....

http://www.mdsbeacon.com/news/2012/10/18/agent-orange-united-states-military-veterans-and-myelodysplastic-syndromes/

a good day for everyone, béné

dave stewart
Sun Oct 21, 2012, 02:14 PM
I filed with the va effective june 6 2011.

I just called and they said my file went to descision august 8 and I should have a deicision in 90 days.

I am not on any drug program, but starting sept 14 I am using the following.

Vitamin k2(mk4) 45 mg per day
IP-6 2.5 grams per day
Shark liver oil 6 500mg per day.
AHCC 4-500mg per day.
Since I have been on this program my wbc count is twice normal, but I
am still getting transfusions for my rbc and hemo counts. Only time will tell.

Keri Anne
Tue Jul 23, 2013, 11:51 PM
Does anyone have info for a widow who has promised her husband that she would fight for him and his fellow brothers. I have made this my fulltime job. Please email me with any info or suggestions to keri@emzkreations.com. I WANT TO HELP!!!

barbara a
Wed Jul 24, 2013, 10:11 AM
Hello to everyone I am a widow of a Viet Vet who passed away 2003 from MDS. We presented a claim to the VA in 2001 and were denied, I have presented a second claim about 6 months ago and again have been denied..I intend on fighting the denial with diligence and tenacity. I do not wish to recreate the wheel and from the foum's comments it appears many of you have detailed research supporting our Vets with MDS to present claims, I would greatly appreciate any data any of you may give to me or direct me to. I am inspired by Bob Marfarlane to continue my battle on behalf of my husband and all Vets. Is there a registry of Vets with MDS?
I have asked my Senator to investigate what it takes to get a code developed for MDS and will share that and all data I collect. THANK YOU EACH for remaining active, interested and persistent! Wit each other we will make a positive result!

Neil Cuadra
Thu Jul 25, 2013, 12:51 AM
barbara a,

In addition to those you are already contacting, be sure to talk to the AA&MDSIF (http://aamds.org) and the MDS Foundation (http://www.mds-foundation.org). Leave no stone unturned!

You might also want to connect with the Asheville / Hendersonville North Carolina Community of Hope.

triumphe64
Fri Jul 26, 2013, 02:06 PM
You might also contact Congresswoman Doris Matsui who has a special interest in this area.

http://forcechange.com/29078/increase-research-funding-for-bone-marrow-failure-diseases/

2mm
Sat Jul 27, 2013, 03:34 PM
Hi Barbara:

I am also a widow of Vietnam vet, deceased Sept. 2009 from "malignant pleural effusion, chronic myelomonocytic leukemia". That was the cause of death written on the Death Certificate; my husband's final diagnosis in the progression from MDS through 6 years of his struggle. I have been denied three times on my claims since my husband passed.

I also prepared my petition, which Bob Macfarlane presented when he was our spokesman to the IOM evaluation in 2011. He is a valiant warrior for the cause. I marvel at his stamina and will power to continue this battle.

I have not presented another claim at this time because of the pressure on the under staffed reviewers of the VA, and the high number of claims from the returning vets from Iraq and Afghanistan. They are so backlogged that I am sure the MDS related claims are denied immediately because the VA does not recognize the illness and has no desire to do so. It's a quick move from one side of the desk to the outbox.

I have my files, and may resubmit in the future, but I'm not sure. It is so hard to relive all the pain associated with the history when you work with the paperwork, and my recovery time gets longer each time I re-submit.

I wish you luck with your claims.

Lillian

simplyamom
Sun Dec 8, 2013, 10:15 PM
Does anyone out there have any information that would help me??!! Thank you.






Hello Bob, I found you on another web site and I am seeking any help that you can give me , please. My son was born in 1976 with trisomy 8 syndrome. I have recently been reading that there might be a link to his dad serving in Vietnam, 1968-1970 where he was exposed to AO. Our son has so many serious health problems,if AO is the reason for his suffering , I need to bring a case against the goverment on behalf of my son. Do you know if there is a class action open?
Any help will be appreciated. Respectfully yours.