Category Archives: Advocacy

Advocacy: PDABs on Our Radar

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In response to rising drug costs, some states are creating Prescription Drug Affordability Boards, or PDABs, that have varying degrees of oversight. PDABs are tasked with determining reasonable drug prices based on things such as: if the price affects a patient’s access to a drug, if there are other drugs proven to do the same thing for a cheaper price, and what the drug manufacturer charges. Additionally, special consideration is to be taken for drugs that treat rare conditions, and input from patient communities is supposed to be included in the decision-making process.

Colorado was one of the first states to create a PDAB back in 2021 and they are currently reviewing 5 drugs, one of which is an orphan drug used by cystic fibrosis patients. Each state decides how they will select the drugs for review. Other states with PDABs are Maine, Maryland, Minnesota, New Hampshire, Oregon, and Washington. States that introduced PDAB legislation in 2023 are Connecticut, Michigan, New Jersey, New Mexico, Rhode Island, Vermont, and Virginia.

As a patient advocacy and education organization, we want to ensure that our MPN community is informed about PDABs and how they could impact your access to MPN drugs. We also want to make certain that the MPN patient voice is central to any board if an MPN drug comes up for review. Most importantly, we want to make sure that every MPN patient benefiting from an MPN drug has access to it.

We want to hear from you! Are you in a state with a Prescription Drug Affordability Board? If so, do you know how your board chooses which drugs will be reviewed or which drugs are currently up for review? Let us know by contacting Ann Brazeau at abrazeau@mpnadvocacy.com.
Stay tuned as we learn more about PDABs and make plans to ensure the MPN voices are heard!

Abstract WP249: Risk for Ischemic and Hemorrhagic Stroke is Increased in Veterans Exposed to Agent Orange and Those With Myeloproliferative Neoplasms

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Natasha Mathur, Andrew Tiu, Zoe McKinnell, Puneet Gill, Martha Antonio, Shanshan Liu, Guoqing Diao, Ramesh Subrahmanyam, Craig M Kessler and Maneesh R Jain

Abstract

Agent Orange (AO) is a dioxin containing defoliant and carcinogen used in the Korean and Vietnam War. There is limited evidence of the association between AO exposure among Veterans and stroke. Stroke is not yet part of the list of presumptive conditions according to the Promise to Address Comprehensive Toxics (PACT) Act which provides Veterans and their survivors disability compensation for conditions arising from exposure to AO. Myeloproliferative Neoplasms (MPN) are uncommon etiologies of stroke but whether AO exposure increases incidence of stroke in MPN has not been described.

Utilizing the Veterans Affairs Informatics and Computing Infrastructure (VINCI) database, a case-control study was performed from 1/1/2006 – 1/26/2023 on the Veterans from Illinois, the state most representative of the US population. ICD-9 and -10 codes identified Veterans with stroke and MPN. AO exposure was verified on the Veterans’ service duration and location. Qualitative data were compared by chi-square tests.

Among 586,555 Veterans from Illinois, there were 15,455 ischemic stroke (IS), 1,593 hemorrhagic stroke (HS), 2,752 MPN, and 59,393 with AO exposure. Among MPNs, there were 237 IS (41 with AO) and 26 HS (3 with AO). IS and HS were associated with AO exposure, OR 1.34 95% CI 1.28-1.41, p<0.0001, and OR 1.20 95% CI 1.03-1.39, p=0.02, respectively. MPN is associated with IS and HS, OR 3.52, 95% CI 3.08-4.03, and OR 3.54, 95% CI 2.4-5.23, both p<0.0001, respectively. There is no significant association with AO exposure among Veterans with MPN with stroke. Among non-MPN Veterans with AO exposure, there was an earlier median age of IS and HS, 67 vs. 70 and 67 vs. 71, both p<0.0001. There was no difference in median age of stroke among MPN Veterans with or without AO exposure. There were no differences with rates of hypertension, hyperlipidemia, diabetes, smoking, heart failure, and pulmonary hypertension among MPN Veterans with stroke with and without AO exposure.

In conclusion, there is an association of AO exposure with IS and HS with an earlier onset among those exposed. There is a strong association between MPN and stroke independent of AO exposure. The biologic plausibility of endothelial dysfunction and accelerated atherosclerosis from AO exposure warrants further investigation.

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Mindfulness Minute: Finding Fire Inside

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By Natalie Giocondo

When the winter winds are howling and the bones are deeply chilled, remember that you can always create a fire on the inside. Perhaps the dropping temperatures have a calming effect on some common MPN symptoms like itching or night sweats, but the darker days certainly can take a toll on the emotional body-especially if the blues are already something that you struggle with.

Winter is a season of stillness, so an excess of inertia is not surprising; however, moving less can also manifest as feelings of depression. Depression is no stranger to the MPN community, in a well-known 2017 study conducted by Dr. Claire Harrison and her colleagues, around 61% of participants indicated feelings of depression. To balance out the dark coldness of winter, we need to create fire (agni) within.

Both yogis and scientists know that the body is in a constant state of flux, reacting to external and internal inputs and trying to maintain balance. From the yogic perspective, we are perpetually moving between too much energy (rajas) and not enough energy (tamas), trying to find balance (sattva).

Tips on Creating Fire Inside

● Avoid eating meats, stale or fermented foods, and underripe fruits and vegetables. These foods slow our digestion and only perpetuate inertia or stagnation in the body.

● Eat six smaller meals to promote consistent blood sugar, and keep the internal embers burning.

● Drink warm beverages like herbal teas, hot cider, or warm water with lemon.

● Savor the experience of eating and drinking turning mealtime into a daily meditative practice that cultivates gratitude and combats feeling low.

● If you see the sun, bundle up and get your face in it, even if only for a few moments.

● Use candles and fireplaces to supplement artificial light after the sun sets.

● Do exercises and yoga practices that engage the solar plexus and create energy and warmth in the body.

Join us online on Thursday, December 14th from 12:00-12:30pm EST where we will do an asana (yoga poses) practice that focuses on the solar plexus and will give you tools to combat depression and create a fire inside. This practice will require a yoga mat or a rug to practice on and will incorporate seated and kneeling poses. Until then, stay warm and imagine your inner summer.

 

Agent Orange exposure shows higher risk for myeloproliferative neoplasm development

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June 15, 2023

By David Statman

In this video, Andrew Tiu, MD, discussed results from a study regarding the link between Agent Orange and myeloproliferative neoplasms, which he presented at ASCO Annual Meeting.

Tiu, a hematology/oncology fellow at MedStar Georgetown University Hospital, noted that the study showed an increased likelihood for developing myeloproliferative neoplasms after exposure to Agent Orange, as well as several other conditions.

“We look forward to looking more into the cardiovascular outcomes with myeloproliferative neoplasms, as well as Agent Orange exposure,” Tiu said.

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

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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