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Myeloproliferative neoplasms (MPNs) are a group of chronic, rare diseases of the blood-forming cells in the bone marrow. They are considered blood cancers, that occur when the body produces too many red and/or white blood cells and/or platelets. These include Polycythaemia Vera (PV), Essential Thrombocythaemia (ET), and Primary Myelofibrosis (PMF) of which only about six cases out of 100,000 people are diagnosed every year.

AOP Health, a longstanding contributor to MPN research, hosted its first MPN breakfast last year to raise awareness and listen to patients’ challenges in battling these diseases. This year’s breakfast included patients as well as hemato-oncologists and researchers for a live discussion revolving around the topics of Quality of Life of MPN Patients and Clinical Trials from a Patient Perspective.

AOP Health welcomed Univ.-Prof. Dr. Heinz Gisslinger (Medical University of Vienna, Austria), Dr. Elena Greschner (Chairwomen of MPN Austria Support Group), Peter Lercher (AIPAMM Italy), Peter Löffelhardt (CEO and Chairperson of GMPNSF, Global MPN Scientific Foundation and Head of MPN ES & CH), and Werner Zinkand (President, MPN Advocacy Network) on the panel. Jenny Maouas from AOP Health also joined the panelists.

Gallup survey: MPN diseases affect the patients’ quality of life

A recent Gallup institute survey of PV patients clearly shows how they are affected in their day-to-day lives: the top three symptoms are fatigue, persistent itching and difficulty focusing. These symptoms can make simple tasks like going for a walk or having an active social life very challenging, in addition to being fit for a job.

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Werner Zinkand President, MPN Advocacy Network

“Imagine laying in your bed wide awake until 4 AM because the itching is unbearable, but you are expected to get up at 7 AM to go to work” said Werner Zinkand, President of the MPN Advocacy Network, who also suffers from an MPN.

Jenny Maouas Therapeutic Area Director HematoOncology, AOP Health Group

“What is also significant is that over 60 percent of patients state that the disease has a negative impact on their psychological well-being”, reported Jenny Maouas,  Therapeutic Area Director HematoOncology at the AOP Health Headquarter in Vienna.

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The importance of patient-to-patient exchange

The fact that 88 percent of patients surveyed stated that they are part of a support group underlines the importance of peer-to-peer exchange. The host of the MPN-Zug podcast, Elena Greschner, also suffering from Polycythaemia Vera emphasized the importance of exchanging information and experiences with the disease among patients and their families.

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Peter Lercher AIPAMM Italy

“It is important to talk to other patients to take their fear”, said Peter Lercher from the Associazione Italiana Pazienti con Malattie Mieloproliferative (AIPAMM) in Italy, who had a bone marrow transplant last year. He shared his experience in the local patient support group with others who may have a transplant ahead of them.

Jenny Maouas was particularly thankful for the feedback from the patient perspective. On a hopeful note, 9 out of 10 patients say they have come to terms with their PV diagnosis and symptoms as part of their lives.

About the study:

For the study, the Gallup Institute interviewed 26 patients* with polycythaemia vera using CAWI -– Computer Assisted Web Interviews. The study was completed in April 2022 and was conducted on behalf of AOP Health.