MDS, Agent Orange and the VA

[barbara a]

any word yet about the decision on your case? any info re the aa/mds intn'l research study is coming along? how is your health?

[Thomas Hawkinson]

Originally Posted by barbara a

How did you get a dVA doc to write a "50-50" letter? i AM AMAZED AT THAT AFTER THE HOOPS OF FIRE I HAVE GONE THRU
THANKX BARBARA

I brought a blank NEXUS form with me to the appointment with the Oncologist at the Bay Pines VA facility.

I went through my normal exam and I handed him the form when he finished.

He asked me to detail my time in S. Vietnam during 1968-1969. I gave him my entire history.

I then asked if he was familiar with the Harvard opinion letter on Agent Orange. He was well versed on it.

I then asked him about the different choices on the NEXUS form and which one would be appropriate for my situation. He thought briefly, then checked off the greater than 50/50 option saying that it best suited my condition. The appointment took well over an hour.

[mdhihwjv]

I don't think that would work for a widow of the veteran, but I did get a letter from a doctor at Duke Hospital in NC. He treated my husband for a short time when he was at the Durham VA, but he is not a VA doctor. Still unsuccessful with claim though. The VA doc who signed death certificate no longer works there, and I can't find him anywhere. I did not know there was a "Nexus form".

[mdhihwjv]

Originally Posted by Thomas Hawkinson

I brought a blank NEXUS form with me to the appointment with the Oncologist at the Bay Pines VA facility.

I went through my normal exam and I handed him the form when he finished.

He asked me to detail my time in S. Vietnam during 1968-1969. I gave him my entire history.

I then asked if he was familiar with the Harvard opinion letter on Agent Orange. He was well versed on it.

I then asked him about the different choices on the NEXUS form and which one would be appropriate for my situation. He thought briefly, then checked off the greater than 50/50 option saying that it best suited my condition. The appointment took well over an hour.

Interesting about his knowledge of the Harvard letter. My late husband also served '68-'69.

[Bob Macfarlane]

Get us the name of the doctor that treated your husband and worked at Duke. If he is alive, I should have his telephone number for you by tomorrow.

Is the Harvard letter the one from David Steensma? If so, is it the latest he wrote for me or an older one from the CD I send out?

[triumphe64]

Latest agent orange ruling.

http://www.foxnews.com/politics/2015...got-sick-from/

[Thomas Hawkinson]

Yes, it was written by Dr. David Steensma. I discovered it in an online publication entitled, MDS Beacon.

[barbara a]

Ok what exactly is "the Harvard Letter"? And WHERE DOES ONE GET A NEXSUS FORM???? I am amazed, I never knew there was such an item!!
Re Duke, mu husband was a patient of Dr. Carlos DeCastro who is a great guy. He did write me a "as likely as not" letter; however, when the VA denied its acceptance as he did not support his opinion with any 'substantial' documentation it was disregarded. I had requested another letter asking him to support his opinion and have never received a reply. His nurse confidentially advised me he thinks it is a useless exercise the VA puts claimants thru and a futile act; a second doctor in the same cancer center feels the same way and does not write them any more!
Dr. DeCastro has been on the board of AA& MDS iNTERNATIONAL ORG and a VA doctor at Durham hospital.

I have stopped researching and now have to organize my materials for an appeal presentation...what a chore! I will address the 6 or 7 points of denial. I have not found a single study which directly relates AO with any of the myelodysplastic syndromes. Benzene + anemia: yes. TCDD most toxic: yes. Anyone have any luck with studies? 20 years ago there was little research done on MDSs no less what a cause was- other then chemo treatments. Today, the research is focused on correct diagnosis and treatment, which is good...but...
Does anyone know EXACTLY which , what, or how AO specifically causes CLL, Multiple Myeloma, Non-Hodgkins?? Maybe then an association would be suggested for the myeloid cells of the stem cells? Just a thought
Please let me know where I can get a Nexsus Form and the site for the Harvard Letter.

I hope everyone is feeling ok and in good spirits- I am! Happy days, enjoy each one.
barbara

[Bob Macfarlane]

Going back to early January, 2015, John Huber, former Executive Director of the Aplastic Anemia/MDS International Foundation told me about a study that was going to be conducted by Dr. David Steensma from Dana-Farber.

The study was estimated to take a year and was going to look into the linkage between MDS and Agent Orange. To my face, with my wife sitting there, John told me at my BVA hearing in DC on March 10, 2015, that the study was fully funded and just waiting upon David.

As recently as June 14th, John wrote me to say:

I will be in Boston with David tomorrow. No one I know has given up. We are meeting to set the study launch date.

Now my latest correspondence says:

Good morning Bob,



Thank you so much for you inquiry about the proposed project. I can update you with a status. Last month the proposal was reviewed by the MDS Clinical Research Consortium, of which Dr. Steensma is a member. The group was enthusiastic about the project, and supported it from a scientific standpoint.



The delay at present is identifying the appropriate source of funding to cover estimated costs. Within the next 6 weeks we’ll have a better understanding of our ability to fund the project in light of other commitments. Until such time as we can fund the project, we’re not ready to make any public announcement.



Thanks again for your note, and please let me know if you have additional questions about the study.



Kind regards,

EJS





Ellen J. Salkeld, PhD

Senior Director, Research & Health

Professional Programs

Aplastic Anemia & MDS International Foundation

(301) 279-7202 x 123


I don't believe John was trying to mislead me in any way but the timing is very interesting. Concurrent with John telling me about the project back in January, John also turned in his retirement date of July 31.

The reason none of you receiving the "blind" copy of this are just finding out is that I was asked by John not to tell anyone else and I honored John's request. Now I feel betrayed by the Foundation. Not only do I feel I was betrayed but that John was also betrayed.

Understanding that all of you with the "blind" copy are former military or the widows of former military, please be nice if you contact the new Executive Director Kathleen Weis (weis@aamds.org). Ms. Weis came to the foundation from the American Red Cross.

You might want to ask her how this went suddenly from "fully funded" and "ready to go" to "proposed?"

You suppose the foundation figured out that 'Nam vets are dying off fast enough that it won't really matter soon? The foundations mission statement says "supporting research to find cures" and not "cures and causes."

[Bob Macfarlane]

This will very well explain why government and their minions at the Institute of Medicine have kept pushing back any consideration of new diseases associated with Agent Orange.

We, Vietnam Veterans with honorable service, have once again been betrayed by an ungrateful nation. Unless the Agent Orange Act is extended there will be no more studies done by the government past September of 2015.

The following could possibly why the Aplastic Anemia/MDS International Foundation decided to delay the study by Dr. David Steensma linking AO to MDS / AML.

http://kimt.com/2015/08/14/walz-push...extension-act/

[barbara a]

I will post on my facebook asking for support fo AO extension of law. I bave been volunteering at a VA hosp and find there are few VIETNAM Vets in comparison to other war vets....don't know why...
I have given my case over to an atty in Virginia. he expects by 2018 we should have some answer.....I am stl researching for "scientific medical" study....and will share anything positive I find
I hope everyone is doing well...Bob Mac, any settlement on your case?

[Bob Macfarlane]

We were in DC on March 10 for the BVA hearing and I honestly thought I would receive a response by now. Of course we've received nothing at this point.

I'll let you know later but we expect to be in Hendersonville in late October. Our son went to Fruitland Baptist Bible College and we are going to visit it.

[mdhihwjv]

Originally Posted by Bob Macfarlane

This will very well explain why government and their minions at the Institute of Medicine have kept pushing back any consideration of new diseases associated with Agent Orange.

We, Vietnam Veterans with honorable service, have once again been betrayed by an ungrateful nation. Unless the Agent Orange Act is extended there will be no more studies done by the government past September of 2015.

The following could possibly why the Aplastic Anemia/MDS International Foundation decided to delay the study by Dr. David Steensma linking AO to MDS / AML.

http://kimt.com/2015/08/14/walz-push...extension-act/

I mentioned this to my Rep. from DAV, and he was not even aware of the looming expiration of this act. He just said that if it was true, they would fight against it! They are truly just waiting for Vietnam vets to die, and they are dying quickly. It is a disgrace. My late husband started showing signs of MDS (took a long time to get a diagnosis) at age 55, 10 years before his death from leukemia/MDS. He also had the already linked diabetes and ischemic heart disease. For all of this, he only received 20% disability for the diabetes before he died.

[barbara a]

if Vet is awarded 100% disability by Social Security is the BVA not obligated to award the same??

[Bob Macfarlane]

They have different standards. SS works off of facts and the VA works from which way the wind is blowing.

[Data]

Originally Posted by barbara a

if Vet is awarded 100% disability by Social Security is the BVA not obligated to award the same??

Barbara,
I don't think the BVA would be obligated to award the same disability rating as the Social Security Administration (SSA) as they are looking at different qualifications. The SSA typically looks at all your medical problems in order to come up with a disability rating where the BVA looks at your service connected medical problems to come up with a rating.

Cheers

Data

[barbara a]

thanks for the clarification.
i hope each of hou are doing well. i continue my research on MDSs and will share any "important" findings
i volunteerxweekly at my local VA hospital and enjoy it. The sharing of conversation history laughter is so rewarding for me. I feel like I am contributing instead of fighfing
be strong. thanks for always including me!😃

[Pete G]

Originally Posted by Bob Macfarlane

They have different standards. SS works off of facts and the VA works from which way the wind is blowing.

I was in Vietnam in 70-71 and 71-72. I was diagnosed with CMML 2 years ago and been getting treatments (vidasa) since. I was recently denied by th VA because it is not one of the maladies they cover. I would appreciate any information you may have that I could use in my quest to get through this with the VA. Thanks for your help in advance.

Pierre (Pete) Gervais

[bailie]

Pete you said, "I was recently denied by the VA because it is not one of the maladies they cover".

What were you "denied"? Is the VA providing coverage for Vidaza? I visited the VA last month so I could get my name and condition into their data base as having MDS/AML. I haven't heard back yet on status. I haven't had, or applied for, any prior VA coverage.

Note: I was in Vietnam in 1970-71 (small arms infantry) with the Americal (198th Inf. Bd) out of Chu Lai, I Corp.

[Pete G]

Bailey,
I have CMML that has been treated at an area hospital. I've been getting vidasa for two years now and so far I feel okay. Looking to get disability so I can take care of mounting hospital bills. Doctor advised me not to get a job because of low neutrophil counts and possibility of easily getting sick.

Pete

[bailie]

Pete, I am interested in how your Vidaza treatments are going. I keep close tabs on my blood counts with Vidaza. My platelets reach a low point 10-12 days following my seven days of treatments at about 50-60 and then increase to about 200-240 three weeks after treatment. It is very predictable every cycle. My RBCs remain constant at about 3.3. WBCs (between 2.0 and 3.2) and neutrophils (.9 and 2.1) bounce around with no seemingly relationship to anything. I have felt pretty good through most of this. I get my Vidaza treatments SubQ in my stomach.

How long do they plan on keeping you on Vidaza? They are stopping me at 12 cycles since I'm not showing any mutations for about the last 6 months.

I was surprised that the VA paid for my trip visits.

[Pete G]

Bailey,
I seem to tolerate vidasa very well. The only problem I've encountered is low neutriphil count. I've had neulasta twice for it. Otherwise when my neutriphil count is low the doctor delays my treatment a week and my body seems to produce enough for the next treatment. Low neutriphil count has been sporadic.

Pete

[barbara a]

There is a DVA bill, investigated,approved and presented by the DVA. regarding changing codes for MDS And criteria re MDS in order to meet levels for disability awRds. The House passed the bill in Dec,2015, it is now in la-LA Land..we need it!!! I wl attach link info tomorrow. Please follow up with it. Text write political rep, VA rep let's get it passed!

[Bob Macfarlane]

I have looked at the proposed coding and NO we do not want the proposed coding. It will not make it any easier to prove that Agent Orange is the cause of your disease and makes you have to be almost dead to get any disability.

It does not consider the mortality rate associated with the disease and rates MDS as a pesky form of anemia; certainly not a form of cancer. You won't get anything until just before flipping into full blown AML.

Don't be foolish enough to think they are doing this to benefit the veteran - - - the only benefit will be to the VA.

[bailie]

I filled out the eBenefits VA form three months ago just to get on the data base for this disease. I never talked about getting anything monetary. I had one appointment and was rated 100 percent disabled. To my surprise I got a check in the mail for over $9,000 for the current month and the two months preceding when I filled out the form. Absolutely no problems with the VA or the doctor who evaluated me.