Author: Lexi Moore

Today MPN Advocates Network, a global collective of patient advocate organizations that serve people living with Myeloproliferative Neoplasms announces the retirement from the Steering Committee of two of their esteemed members. Peter Loffelhardt is one of the founding visionaries of the MPN Advocates Network. Like many advocates, he is a patient himself, having been diagnosed with Polycythaemia Vera in 1994. It's hard to imagine now, but 25 years ago, reliable information about MPNs was very difficult to find, specialists were rare and newly-diagnosed patients had to cope with very little support. Peter believed that people in that situation deserved more, and set about establishing a support group for patients in his adopted home of Spain. As his work as a patient advocate progressed, he used the skills he had developed over a long and successful career in international business to build a broad network of contacts in the medical community and the pharmaceutical industry. Peter soon realized that advocates and patient communities...

We are reaching out with some The MPN Advocates Network steering committee is excited to share with you a few new opportunities to engage in a stronger way with the Global Network of MPN patient advocacy organizations. First, we want you to save the date of November 29th, 2020 for the first of two MPN Horizons sessions. Due to the pandemic, we are making these virtual events, and somewhat more abbreviated than in years past. Nevertheless, we feel it is very important to connect you with information that you will find useful as you do your important work. Second, for the first time ever, MPNAN is asking you, the members, to nominate and vote on who you want to serve on the Steering Committee for MPNAN. We have up to 3 open seats available. As a reminder, the mission of MPNAN is to enhance the ability of patient advocacy organizations to improve patient care and quality of life globally for those...

Congratulations to two of  The MPN Advocates Network's steering committee members who have recently published an article outlining challenges facing MPN patients! Cheryl Petruk, Executive Director of the Canadian MPN Research Foundation and Jon Mathias of MPN Voice in the UK teamed up to author the article which is available online here and will be in print in an upcoming issue of Springer’s Advances in Therapy*. The article includes an overview of current guidelines for the treatment of MPNs but highlights the incongruity between the patient experience, including breadth and burden of symptoms, and the physician’s perceptions, treatment goals, and expectations. The authors also discuss the effect geographical location has on patients including psychosocial impacts and access to treatments and clinical trials. Finally, the authors posit that better availability of Real World Data (see my recent newsletter article here) such as that collected in myMPN will aid in improving disease management for many patients. According to Cheryl Petruk, the hope with this publication is to spread the word...

Dr. Claire Harrison, MD, FRCP, FRCPath, Professor at Guy’s and St. Thomas’ Hospital in London summarises relevant information for MPN patients regarding COVID-19, or Coronavirus. 1. Patients with a myeloproliferative neoplasm (ET, PV or myelofibrosis) who are on aspirin alone, blood-thinning tablets (like warfarin, apixaban or rivaroxaban), venesection alone or no treatment at all only need to follow the government’s general advice and aren't considered high risk. 2. Patients over the age of 70 with an MPN, or any MPN patient with additional illnesses such as heart disease, high blood pressure or diabetes, are considered more vulnerable and should follow the government’s guidelines for vulnerable individuals. 3. Patients under 70 years of age who are on medications to control their blood count or their MPN like Hydroxycarbamide, Interferon, Anagrelide, Busulfan, and combinations are in a group where the situation is unclear and there is no clear evidence that they are high risk. But they should at the very least follow the government’s general...

While information is still coming in and what we all know continues to emerge about the Covid-19, or Coronavirus, situation, Dr. Robyn Scherber from the University of Texas-San Antonio Medical Center answers a few frequently asked questions she's received from patients in her practice. Am I most susceptible to coronavirus because I have an MPN? We don’t know yet, so it is best to show appropriate caution and follow guidelines from the CDC and WHO about hygiene and avoiding large gatherings. The data to help answer the questions as to whether coronavirus is going to be a huge problem or more of a nuisance for most patients with MPN is just not there. Although most folks that have severe COVID19 virus injections have serious underlying comorbid health issues—even to us physicians they really haven’t been told the details what most of those are. Most cases that I have heard of suggesting that underlying lung or heart disease seems to be the most...

Dr. Ruben Mesa, Director, Mays Cancer Center, UT Health San Antonio, MD Anderson, offers guidance for patients with myeloproliferative neoplasms (MPNs) in dealing with the Coronavirus (Covid-19).    ...

Dr. Ruben Mesa and Dr. Robyn Scherber hematologists from the Mays Cancer Center, home to UT Health San Antonio MD Anderson discuss the latest updates regarding new treatments for myeloproliferative neoplasms (MPNS) including essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). They also discuss the latest updates from the 2019 American Society of Hematology Annual Meeting. ...

MPN Advocates Network (MPNAN), a global collective of Myeloproliferative Neoplasms (MPN) Patient Advocacy Groups, is seeking a part-time Executive Director January 2020 About the MPN Advocates Network (MPNAN) MPNAN was originally founded in 2013 by representatives of MPN patient groups from around the globe. The vision was a world in which the patient advocacy groups helping those with Myeloproliferative Neoplasms (MPN) would be connected to one another and the most up to date information about how to manage a PAG successfully. MPNAN’s mission is to enhance the ability of patient advocacy organizations to improve patient care and quality of life globally for those who have been diagnosed with an MPN. MPNAN is constituted as an independent steering committee within a parent organisation, the Leukaemia Patient Advocates Foundation (LePaf), registered as a non-profit organisation in Switzerland. MPNAN operates for the benefit of Myeloproliferative neoplasms (MPN) patients and acts independently of any other organization or company. About MPNs MPNs are a group of chronic, progressive blood...

The European Medicines Agency (EMA) publishes a monthly newsletter to provide updates on various topics for patients, healthcare professionals, and the pharmaceutical industry. The Newsletter contains key information on human medicines and changes to regulatory processes in the past month. These highlights do not cover all the Agency's activities in the area of human medicines. Click here to learn more about the newsletter and to join the mailing list! 2020 Editions of Human Medicines Highlights: January 2020  2019 Editions of Human Medicines Highlights: December 2019  November 2019  October 2019  September 2019  August 2019  July 2019  June 2019  May 2019  April 2019  March 2019 February 2019  January 2019    For older editions, see the Newsletter archive....

Sierra Oncology launched the MOMENTUM clinical trial for patients with myelofibrosis in November 2019. The randomized, double-blind, global phase 3 trial is designed to confirm the efficacy of momelotinib on myelofibrosis symptoms, transfusion independence, and splenomegaly, as compared to danazol. Momelotinib had previously been under Gilead before being sold to Sierra in 2018. The trial is targeting enrollment of 180 myelofibrosis patients who are symptomatic, anemic and have been treated previously with a JAK inhibitor.  According to the Chief Investigator Dr. Verstovsek, "Momelotinib could become a suitable alternative for many patients previously treated with a JAK inhibitor due to its ability to positively address all three hallmarks of myelofibrosis - symptoms, anemia and an enlarged spleen. Critically, momelotinib has consistently demonstrated positive anemia benefits in its prior clinical trials. This anemia benefit is biologically-driven, via potent inhibition of the ACVR1/hepcidin axis, a mechanism that is unique in the JAK inhibitor class." The MOMENTUM clinical trial will be available to myelofibrosis patients all...