Thrombosis awareness
Thrombosis awareness is relevant for everyone, and especially for MPN patients. It is provided courtesy of the International Society on Thrombosis and Haemostasis (ISTH). The ISTH established World Thrombosis Day as 13 October, ‘to draw attention to a global health threat that is often overlooked: thrombosis, or blood clots.’
The ISTH explains that ‘Every year 1 in 4 people worldwide die from conditions related to thrombosis. Blood clots are the underlying cause of the top three cardiovascular killers: heart attack, stroke and venous thromboembolism (VTE). Yet most people do not know the signs, symptoms or risk factors.’
We believe the infographics below are of particular value in highlighting some important, relevant information for MPN patients.
Please note that heart attack symptoms can be different for women.
To find out what they are see HERE
Many more specific infographics are available, including in several languages, from the World Thrombosis Day website.
Final Results: Phase 4 Study of Ruxolitinib for myelofibrosis
A study has just been released in the European Journal of Haematology about the real world impact of ruxolitinib treatment in myelofibrosis patients in Germany.
Titled, ‘Final Results From a Large, Non-Interventional, Phase 4 Study of Ruxolitinib for the Treatment of Myelofibrosis in Clinical Routine‘ it has reassuring findings.
Below are copied sections of the abstract. The full text is freely available at the above link.
‘JAKoMo was a long-term, multicenter, non-interventional study observing the efficacy, safety, and quality of life (QOL) effects of ruxolitinib (RUX), managed per clinical routine at investigator discretion, for treatment of 943 patients with myelofibrosis (MF) in 122 German centers………………………..’
‘………….The JAKoMo study demonstrates that real-world RUX treatment of MF promotes significant and sustained clinical and QOL benefits, including improvement of general health and alleviation of MF-associated fatigue. Maximum sustained responses were generally achieved within 6 months and associated with fewer adverse events than in published randomized trials, which may reflect more conservative and personalized real-world dosing.’
Ruxolitinib on PBS for polycythemia vera
The MPN AA is delighted to advise that, as of today, 1 September 2025, ruxolitinib is available on the pharmaceutical benefits schedule (PBS) for the treatment of adult patients with polycythemia vera who are resistant to, or intolerant of hydroxycarbamide (hydroxyurea). We have copied and pasted below what we believe are the most relevant details from the Pharmaceutical Benefits Advisory Committee (PBAC)’s recommendations.
‘‘…..the PBAC is satisfied that ruxolitinib provides, for some patients, a significant improvement in efficacy over best available therapy. The PBAC noted that while no statistically significant differences in progression-free survival or overall survival were reported in the clinical trial evidence, differences in these outcomes were assumed in the economic model and maintained throughout the 20 year time horizon……’
If you wanted to read any more detail, here is the link to the relevant PBAC page.
Polycythemia vera – new way of monitoring disease activity?
A European study has just been released suggesting a new way to monitor polycythemia vera patients’ disease activity.
Titled ‘Neutrophil-to-Lymphocyte ratio as surrogate for JAK2V617F suppression and event-free survival in polycythemia vera’ it explores the value of using neutrophil-to-lymphocyte ratio (NLR) as a means of monitoring PV disease activity.
The study used data from three of the largest PV clinical trials, and evaluated the impact of PV therapies on the neutrophil-to-lymphocyte ratio – and then its relationship with molecular response (reduction in allele burden) and clinical outcomes.
The full article is free to access HERE.
Conclusion
‘This study highlights the distinct effects of Hydroxyurea and Ropeg on leukocyte-derived biomarkers in PV. While both reduce leukocytosis and neutrophilia -key thrombosis drivers- Ropeg also normalizes NLR, lowers JAK2V617F VAF, and better preserves lymphopoiesis, suggesting potential to reduce thrombosis and modify disease progression. These findings support NLR as a predictive biomarker, reinforcing the importance of inflammation-targeted strategies in PV management.’
MPN Education Symposium in Perth and online
‘What does optimal management of MPNs look like in 2025?’
MPN AA, in partnership with the University of Western Australia School of Biomedical Sciences and Royal Perth Hospital, is proudly presenting an MPN Education Symposium.
The symposium will be all day on Saturday 25 October, WA time.
It is free to attend in person or online.
Who should attend?
MPN patients, family members, carers, friends, clinicians, researchers and people interested in learning more about MPNs are welcome to attend.
There will be opportunities to ask questions and meet and chat with other participants throughout the day.
FAQs are available on the Symposium registration page.
And for more details, including the Event program, see this page or use the QR code above.
Pegasys update 4 August 2025
Pegasys® is now available – the Irish stock has arrived, however it will not be on the PBS until 1 September 2025
The MPN AA is happy to share the advice that Pegasys® is once again available for Australian patients. BUT it will only be available as a private script during August.
For a full explanation of the situation, please see the advice from the supplier of Pegasys® in Australia, Echo Therapeutics on the JustMeds website.
Atrial fibrillation and MPN patients with Jak2 mutation
A recently published research article may be of interest to MPN patients with the Jak2 mutation. It is titled ‘Incidence, Outcomes and Risk Factors for Atrial Fibrillation in Patients With JAK2V617F-Positive Myeloproliferative Neoplasms‘. The article was published in Cancer Medicine in July 2025.
The researchers retrospectively analysed clinical profiles of 439 Chinese MPN patients with the Jak2 mutation from several hospitals in China between 2017 and March 2025. The researchers’ intention was to consider specific risk factors for atrial fibrillation (AF) in the MPN patient population which they felt “have not been fully elucidated”.
The researchers concluded that:
- “atrial fibrillation was significantly associated with higher risks of stroke and mortality in patients with JAK2V617F-positive MPN.
- TET2 mutation and increased IL-1ß were independent risk factors of AF in patients with JAK2V617F-positive MPN.”
- They also noted that “interferon-alfa and ruxolitinib were associated with improved AF-free survival in patients in the high-risk group.”
The paper is freely available to read in full HERE.
The MPN Alliance Australia works in partnership with the Leukaemia Foundation
