A Veteran’s Story: The Frustrations of Filing a Claim with the VA

By Wayne E.

MPN Patient and Vietnam Veteran Wayne E.

I served in the USAF Security Service, 6924th Security Squadron, stationed in Da Nang, Vietnam for one year (1970-1971) and was exposed to the deadly Agent Orange/Dioxin. In 2007, after a simple pre-op blood test, I was diagnosed with essential thrombocythemia (ET). Upon further study I was told I had an incurable, but manageable, blood cancer, coupled with a gene mutation (JAK2). The word cancer scared me. I had never heard of ET and I was at a loss for what to do. I didn’t know where to go next. After much reading about these potentially deadly diseases, I found out I was one of many Vietnam Veterans who had an MPN.

In 2011, I filed my first claim with the VA. Until this filing, I was unable to get any substantial information from my primary care physician (PHP) or my hematologist/oncologist, as to what may have caused or contributed to my ET. They knew virtually nothing about Agent Orange. I contacted the National Institutes of Health, The Centers for Disease Control, and as many online medical sites as possible, all ending with a bigger question mark. Nothing could be explained to satisfy my inquiry.

It was by chance that I connected with a most remarkable group, MPN Advocacy and Education International. I could never thank them enough for the compassion and the understanding they extended to me.

After my initial rejection from the VA, I filed three more times and each time I was denied because MPNs are not on the “presumptive” list of Agent Orange-related illnesses. The same message I kept getting was I needed “clinical rationale” to support my claims. My doctors have not been able to provide me with this needed information. I don’t know what to do today. I understand there are many Vietnam vets that have won their appeals and now get benefits, but there are many others who were not approved and just gave up. I don’t plan to give up.

To my fellow Vietnam Veterans who may be dealing with one of these MPNs, don’t give up. If you have been denied, file an appeal. There is hope, comfort, and assistance available. With the help of MPN Advocacy and Education International.

 Learn more about filing a claim with the VA

 Learn more about Veterans and MPNs

My Child is Being Evaluated for an MPN

How to Approach the Conversation with Your Child’s Hematologist

Dr. Nicole Kucin, MD, MS Assistant Professor of Pediatrics, Pediatric Hematology/Oncology, New York Presbyterian Hospital/Weill Cornell Medicine.

By Nicole Kucine, MD, MS
It can be difficult to know what to expect when your child is being evaluated for an MPN. There is limited guidance on the internet, which can make specialist visits overwhelming to families. As parents, you can expect that you and your child will be asked many questions about symptoms he or she might be having, including headache, abdominal symptoms, rashes, and itching. Your child will undergo a number of blood tests, including some genetic tests, as well as a bone marrow examination. Children who are having symptoms specific to a certain body area may need radiologic tests (such as an ultrasound or MRI.) You should feel free to ask anything you want, and make sure if you are searching the internet you look at reliable sources (such as the MPN Research Foundation, MPN Advocacy Education International, or cancer.gov.) Some of the questions I am often asked include the following:

Does my child have cancer?
This is a tricky question, and others may disagree, but I do not think of children with MPN as having cancer. In adults, the World Health Organization criteria considers MPN to be chronic forms of leukemia. We are still evaluating MPN in children, and at this point it is not clear that they are all the same disorders in kids as they are in adults. I view the classical MPN in children as chronic bone marrow disorders, and while they have the potential to transform to acute leukemia, this is not something that has been reported in the literature. By envisioning these as chronic illnesses, I think it helps to set the expectations for long-term follow-up and aiming for keeping day to day activities as normal for your child as possible.

Does my child need the bone marrow evaluation?
The answer to this is definitely yes. The bone marrow exam is an extremely important part of the diagnostic process. It can provide a lot of information about what is going on with your child’s blood cells at the source. Things like storage iron, fibrosis, and the appearance of the precursor blood cells are studied. The procedure itself is performed with anesthesia to make sure your child is asleep during the bone marrow test and doesn’t remember it. The pain following a bone marrow test is generally very mild, and children may not require any pain medicine or might require a dose of Tylenol.

What type of MPN does my child have?
The diagnostic criteria for the various types of MPN are based on years of study and data on adult patients. They include features like appearance of bone marrow cells, genetic findings, and lab criteria. Making the appropriate classification for adult patients is important for discussions of prognosis and treatment. We do not yet know if we can directly apply these criteria to children, and knowing the exact type of MPN each child has may not be possible. While it is important to gather all of this information in children, it may not be as important to specifically name the exact type of MPN, and “MPN, unclassifiable” is an appropriate diagnosis for a number of children. The decisions about how to counsel families, what treatments may be recommended, and what follow-up is needed, will be made based on a variety of findings.

Does my child require treatment for his or her MPN?
The answer to this question varies, as I do not believe treatment is required for all children with MPN. I usually determine the need for treatment based on an individual child’s symptoms and lab findings. I generally do not recommend treatment for children who are asymptomatic and have reassuring labs. Children with mild symptoms in the setting of a high platelet count can often benefit from low-dose aspirin, as long as they are not showing evidence of bleeding or acquired vonWillebrand disease. Children with high red blood cell counts can also benefit from low-dose aspirin or phlebotomy. When a child has a severe clinical event such as a blood clot, or does not have improvement of symptoms with initial therapy, then cytoreductive therapy is appropriate. Which medication is used should be decided based on a conversation with the family and the treating doctor. I have been asked about what is my “cutoff” for high platelet or red cell counts for treatment, and there isn’t a standard cutoff. For example, I don’t think an asymptomatic child with a platelet count of 1.3 million necessitates treatment if they are feeling well and otherwise healthy. If you asked 10 different hematologists, you would probably get 10 different opinions on when to treat, so I think it’s important to have a conversation with your hematologist about the risks and benefits of different treatments.

While it can be frustrating to be facing a rare disease, there is ongoing research to help us better understand these conditions in children and adolescents. Keeping an open mind and making sure you have good communication with your child’s hematologist is the most important thing you can do.

Vietnam Veterans Update: MPNs on VA’s Agenda Finally

Ann Brazeau, CEO, MPN Advocacy and Education International, and Dr. Raajit Rampal, MD, PhD, Memorial Sloan Kettering Cancer Center, attended an “open” meeting held by the US Department of Veterans Affairs with the National Academy of Sciences’ (NAS) Committee on Agent Orange and Health. The meeting, held in Washington, DC on March 1st, addressed myeloproliferative neoplasms for the first time ever. They are now being considered for further studies. Both Ann Brazeau and Dr. Rampal presented arguments to the committee regarding compensation and benefits to all veterans with an MPN, and related the scientific examination required to finally test the link between Agent Orange/Dioxin and myelofproliferative neoplasms.

A new committee has been established by the National Academy of Sciences (NAS) that will conduct a review and an update of scientific evidence regarding statistical associations between diseases and exposure to Dioxin and other chemical compounds used in Vietnam.

Dr. Rampal will begin his study in the near future. MPN Advocacy & Education International will be sending a questionnaire to all veterans affected by MPNs to begin collecting needed data to defend our case. In the meantime, we are completing a package that will help assist veterans with their claims.


Vietnam: The Battle at Home

By Barry H.
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.

If you are a Vietnam Veteran with

polycythemia vera, essential thrombocythemia or myelofibrosis,

click here




January 8th Event in Washington DC

Another patient education event will be held in Washington DC on January 8, 2014. Speakers will include Dr. Jason Gotlib, Dr. Ross Levine, Dr. Ruben Mesa, Dr. Laura Michaelis, Dr. Craig Kessler, and Dr. Srdan Verstovsek. Additional speakers will be announced.

The event will be held at the Washington Hilton on Connecticut Avenue, with registration beginning at 7:30 AM, the first speaker at 8:45 and the conclusion of the program at 4:30 PM.

More details in the program flyer: Jan. 8 2014 Event Flyer

Ringing the bell for MPNs

Ann Brazeau joined other MPN advocates in New York City on Tuesday, Sept. 3, as guests of Incyte Corporation. Incyte rang the opening bell on the NASDAQ exchange to mark the beginning of blood cancer awareness month and the launch of a community awareness program. See the Raise Your Voice Toolkit for related resources and information.


Raise Your Voice in Support of MPN Awareness

As a person affected by MPNs, you are likely to be all too aware of the challenges that living with a rare condition presents. You may wonder: Where are the bracelets and ribbons for MPNs? Where is the press coverage of what it is like to live with a rare blood cancer? What can I do to bring more attention to these conditions?

The answer is simple: Raise your voice. Unite with others who are affected by MPNs, and speak out so that your voices are heard and your stories are shared.

The Raise Your Voice Toolkit has been developed to help you take action to educate others about MPNs. Taking part in these activities will help to create supportive communities that unite organizations, health care providers, patients with MPNs, and caregivers.

Download the Toolkit (PDF, 614 KB)

Annette De Bow Treks for a Cure for Polycythemia Vera

Annette De Bow

In 2010, Anette De Bow combined her adventurous spirit and deep appreciation of nature and hiked the John Muir Trail in the High Sierras to raise funds for research and to find a cure for the myeloproliferative neoplasm called polycythemia vera. She raised $30,000 that year and donated that to the MPN Research Foundation. This July, Annette will hike 180 miles from Tahoe to Yosemite to raise more funds for a cure. For more information go to trekforacure.com.