Thrombosis awareness

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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.

Infographic about thrombosis risk factors

Infographic explaining thrombosis types

Please note that heart attack symptoms can be different for women.
To find out what they are see HERE

infographic of women's heart attack symptoms

Many more specific infographics are available, including in several languages, from the World Thrombosis Day website.

 

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Final Results: Phase 4 Study of Ruxolitinib for myelofibrosis

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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.’

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Ruxolitinib on PBS for polycythemia vera

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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.

 

 

 

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Polycythemia vera – new way of monitoring disease activity?

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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.’

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MPN Education Symposium in Perth and online

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Publicity flyer for MPN Education Symposium 25 October 2025

‘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. 

Please register to attend either in person, or online. 

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Pegasys update 4 August 2025

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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.

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Atrial fibrillation and MPN patients with Jak2 mutation

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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.

 

 

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Video interview re Pegasys supply

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Haematologist Dr Cecily Forsyth and MPN AA advocate Nathalie Cook OAM have prepared an explanatory video for patients about the current Australian Pegasys supply.

The video addresses the current and future supply issues and outlines strategies for patients and their haematologists to minimise any problems or manage any short breaks in supply.

In summary, the expected timeline for Pegasys Australian supplies is:

May – July
2025		 Just under one month of 135 ug syringes remain.
Australia is currently out of 180 ug supply.
Patients with 180 ug scripts who may not have enough Pegasys supply to last til July may need a 135 ug script for the interim period.
July
2025		 New Irish stock expected to arrive in Australia.  This stock is from the new certified factory in Austria that we will receive stock from later in the year.
Patients with 135 ug scripts may need to obtain 180 ug scripts as the Irish stock will have far more 180 ug supplies than 135 ug supplies
July – November
2025		 Patients will be using the Irish supplied stock and this will continue to be delivered by JustMeds until permanent supplies are in place.
Patients will still need to multidose to preserve supplies.
November 2025 New Australian stock direct from the factory anticipated to arrive

A transcript of this interview is available HERE

Background

On 20 May we posted a  Letter from Echo Therapeutics also explaining more detail around the Pegasys supply situation.

Not sure how to multi-dose?
The MPN AA previously prepared an information sheet on  How some patients multidose.
It includes information on where patients can buy the correct size needles online if their pharmacy or hospital does not have any available.
And below is a short video prepared previously by haematology nurse practitioner Jacqui Jagger showing how to safely multidose.

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Pegasys supply update as of May 2025

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The MPN AA has been advised of some very encouraging news about the Pegasys supply in Australia into the future.

For details, please see the attached letter from the Australian supplier, Echo Therapeutics.

Letter-to-Clinicians Patients and HCPs -Update-on-Pegasys®-supply-Australia-May-2025.

 

 

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“Sentry” myelofibrosis phase 3 clinical trial recruiting in Australia

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An international clinical trial for myelofibrosis patients is currently in phase 3 and is actively enrolling in almost 150 sites across the world.
The MPN AA has been asked to raise awareness because there are trial sites in Australia (see below).  If you have myelofibrosis and think it might be relevant for you, you would need to ask your haematologist.

We understand that this phase 3 trial may be suitable for MPN adults patients with myelofibrosis who have not been treated with JAK inhibitor, have a platelet count >100 × 109/L, and with active symptoms.

The trial is studying selinexor in combination with ruxolitinib versus ruxolitinib plus placebo in patients with myelofibrosis.

This trial’s international identification is NCT04562389.  The clinical trial is titled XPORT-MF-034 (SENTRY), and is in phase 3.

The following Australian trial sites are either active or planned for activation:

LOCATION HAEMATOLOGIST CONTACT
QLD: Icon Cancer Centre – Wesley  Dr Ian Irving
NSW: Liverpool Hospital  Dr Bartlomiej Getta
NSW: Campbelltown Hospital  Dr Bartlomiej Getta
NSW: Bankstown-Lidcombe Hospital Dr Bartlomiej Getta
SA: Royal Adelaide Hospital Dr David Ross

For further information about the SENTRY trial and whether this is something that might be suitable for you, you would need to speak to your haematologist.

Please note that the MPN AA is a volunteer patient group. We are not experts and therefore not in a position to endorse any clinical trial. You need to make your own inquiries together with your medical team.

For further information about clinical trials see the Australian and New Zealand Clinical Trials Registry information for Participants or the Leukaemia Foundation Clinical Trials page.

 

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