MPN Advocacy & Education International often hears from veterans regarding their myeloproliferative neoplasm (MPN) diagnosis and the struggles with the VA to get MPNs recognized as a service-related illness. We spotlight many of these stories in our monthly newsletter, MPN Community Connection, see below. If you are not currently receiving our newsletter please click here. Below you can read about their experiences with the VA.
Vietnam: The Battle at Home
See the guy in the picture. Nice smile on the outside, but inside, not so much. That is what it’s like living with essential thrombocythemia. It’s a life sentence without parole. The need for MPN advocacy and continued MPN research is essential or there would be no smile at all. Over the last year, in an effort to influence the Veterans Administration, MPN Advocacy and Education International and I have made contact with the almost three hundred Vietnam Veterans with a myeloproliferative neoplasm (MPN) and we continue our outreach to find more.
The VA has denied almost all claims for compensation because they say there is no scientific proof that these diseases resulted from exposure to Agent Orange. Yet, other blood cancers are on their ‘presumptive’ list including, hairy cell leukemia, B Cell leukemia, and multiple myeloma. The ‘presumptive’ list presumes a disease was caused by exposure to AO so why the need for a smoking gun for MPNs.
These afflicted Vietnam veterans from all over the country have one basic thing in common, their exposure to Agent Orange. In my opinion, Agent Orange was “friendly fire.” The North Vietnamese and the Viet Cong did not expose us, our own government did. The casualty all these years later from Agent Orange exposure cannot even be counted.
Ironically, some individual veterans with MPNs have received full or partial benefits so why aren’t all of us? War is never fair, to fight at home for fair and impartial treatment is equally unfair. There are too many veterans with essential thrombocythemia, myelofibrosis and polycythemia vera for it to be a coincidence. Our efforts will continue in hopes of persuading the VA to put MPNs on the ‘presumptive’ list where they belong.
A Veteran’s Widow Gets VA Approval
In 2011, my husband filed a claim with the VA in hopes of having his myelofibrosis recognized as service related disease. He believed his exposure to Agent Orange while in Vietnam caused his MPN. He died in May 2014. His claim had been denied twice. After he died, my son and I went to a hearing in June 2015 to once again have his case reviewed. On January 13, 2017, I received notice from the VA stating my husband’s illness and death were related to his service in Vietnam and his benefits were approved. This was good news and a financial benefit for me. However, the VA has denied many more cases because MPNs are not included on their ‘presumptive’ list of service-related illnesses.
There were several things we did which I believe helped our case. For example:
- We researched the cases where benefits have been approved. In each of the approved cases I found there were letters from the veteran’s doctor in support of the connection between the illness and their service. Keep it simple. It does not need to be too technical.
- We were sure to include a nexus: a statement of their job in the service and their exposure. Our letter of approval from the VA mentioned both our doctor’s letters and the nexus.
- We created an executive summary of our case, and kept it to one page and provided all back up information with it.
We hope our victory is useful to other veterans in their effort to receive benefits for their MPN.
MPN Advocacy & Education International is creating a package
for Veterans with MPNs to assist in their efforts when filing a claim.
We will keep you posted as it is finalized.
Gaining Knowledge and Advocating
I served in the Army during a more recent war than many of the veterans who have been diagnosed with an MPN. I was diagnosed with Essential Thrombocythemia (ET) in early 2013. My son was only a year old and I had spent two weeks in a VA hospital while hematologists tried to rule out other illnesses. I was put on Hydroxyurea (Hydrea) almost immediately due to the aggressive rise of my platelet count. It was eventually controlled and I was sent off with a permanent Hydrea prescription.
My background in health care and my university education prompted me to research this illness and I learned a lot. I read about alternative drugs, but the drug that stood out to me the most was peginterferon alfa-2a (Pegasys). It’s what was advised for young females of childbearing age, as it isn’t harmful to a fetus. I also learned that Pegasys is the only known drug that gives a glimmer of hope for remission. That’s when I decided I wanted to be on Pegasys. Hydrea was giving me terrible side effects.
A Vietnam Veteran’s Story:
“I went to a Veteran’s “Help” organization in the summer of 2014. I actually went for assistance with filing a hearing claim. These guys were thorough. Thus, in addition to the hearing claim assistance, they went through a checklist…..and in doing so assisted me with filing a PV claim and an agent orange registry application. The hearing claim was fairly perfunctory, resulting in an award. As they told me would be the case, the PV claim was denied……….but the idea was to file the claim so that, in event the MPNs are added to the presumptive list, the claim will revert back to the filing date………….as all VA claims do. The benefit to that is that the compensation commences on the claim date. There seem to be Veterans’ assistance organizations in every state………………and these guys are superb at advocating for the Vets they voluntarily serve.”