Myelofibrosis drug Momelotinib approved by the US FDA

Here is an Australian news item about the US FDA approval of Momelotinib, a new drug for Myelofibrosis. This is significant as there are few treatment options for those with myelofibrosis, and this is another option for those for whom other therapies are unsuitable. We would love to see it made available to Australian patients in the future.



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Taiwanese study on incidence of PV

A study has been released on the incidence of polycythemia vera in Taiwan for 2016-2017.
This report is of interest due to its large sample size of 2647 PV patients and because it covers a wide array of information, including treatments and mortality figures (although noting that interferon treatment was not readily available in Taiwan in 2016-2017).

In the Taiwanese study, PV incidence rates were estimated to be 2.41 and 2.65 cases per 100,000 people in 2016 and 2017, respectively.

In Australia, the reported incidence of PV from 2007 to 2016 was 1.4 cases per 100,000 people. This is based on Australian state cancer registry data, substantially lower than Taiwan and several other countries. It is suspected that in Australia, not all PV was being reported during that period. This is likely due to some inconsistent reporting practices in states and territories as well as bone marrow biopsies not always being undertaken. (A bone marrow biopsy diagnosis is automatically reported to cancer registries.)

Of further interest is that this Taiwanese study compares PV incidence and prevalence data from other countries. The rate of PV in the USA is much higher than in other countries.  This study will be useful for Australian researchers when comparable Australian data becomes available later in 2023.

The study concludes …..

‘This nationwide cross-sectional study provides a snapshot of the real-world clinical landscape of PV in Taiwan. This study reported a number of patient characteristics that were found to be different to the Caucasian populations reported in previous studies, which may provide some evidence that warrants further investigation into the genetics of PV among racial groups. This study also reported several similarities and differences of treatment patterns compared with other countries reported in previous literature.’

The full article is available at Real-world patient characteristics and treatment patterns of polycythemia vera in Taiwan between 2016 and 2017: a nationwide cross-sectional study

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Second versus first wave of COVID in MPN patients

European haematologists have been undertaking ongoing studies of MPN patients who have contracted COVID.  This study covers the second COVID wave of 304 MPN COVID cases from 39 different hematology centres.  Their findings are outlined in just released (January 2022) correspondence in the International Journal ‘Leukemia’.  Importantly, they found a relatively higher risk from COVID for patients over 70, more thromboses in ET patients and a need for permanent surveillance of MPN patients who have survived the acute phase of a COVID infection.

‘Patients of the second wave presented, compared to those of the first, with a less severe disease, including a lower degree of inflammation, leading to hospitalization in a smaller percentage of cases. Overall, the mortality rate was significantly lower, likely due to early COVID-19 diagnosis, facilitated by the greater availability of swabs than in the first wave, more efficient management of infected patients, better prepared health systems and preferential protection of older and higher-risk MPN vulnerable subjects.’

‘However, patients over 70 years still presented with an excess of mortality, particularly when associated with comorbidities and an MF phenotype. Unfortunately, no data are available so far in our series to support a role of vaccinations. The high thrombosis rate in patients with ET was confirmed, suggesting that in this MPN phenotype regimens of antithrombotic prophylaxis in addition to heparin should be explored. Also in the second wave, but to a lesser extent than in the first, the health consequences of COVID-19 protracted far beyond acute infection, suggesting careful and permanent surveillance of patients with MPN who have survived the acute phase of SARS-CoV-2 virus infection.’

The full article has been made available HERE.



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2021 international MPN patient conference videos available

MPN patients are fortunate to have access to videos and presentations from the 12th Joyce Niblack memorial conference on MPNs which features the world’s leading MPN experts.  It was held virtually in February 2021 and explains the latest developments in MPNs around the globe.

The information is specifically presented for MPN patients.

We thank the MPN Education Foundation for making these videos available to MPN patients and their families.

Dr. Ruben Mesa & Dr. John Camoriano
Conference Dedication and Welcome
Dr. Jyoti Nangalia
MPN Molecular Biology
Dr. Tiziano Barbui
Managing ET in 2021
Dr. Richard Silver
Managing PV in 2021
Dr. Srdan Verstovsek
Managing MF in 2021
Dr. Ruben Mesa
Guidelines and Gaps in MPN
General Q&A
Dr. Jeanne Palmer
Setting the Stage for Transplant
Dr. Krisstina Gowin
Complementary Treatments for MPNs
Dr. Susan Leclair
Learning about Labs, all about LDH,
SARS-cov2 and you
Dr. Susan Leclair
Thyroid Disorders
Dr. Jean-Jacques Kiladjian
The Future of Interferon in MPNs
Dr. Jason Gotlib
Evolving Targets for MPN Therapy
Dr. Angela Fleischman
Nutrition and MPNs
Dr. John Mascarenhas
New Drugs for MPNs
Camoriano, Leclair, Gotlib
ET Breakout – Q&A
Silver, Mascarenhas, Gowin
PV Breakout – Q&A
Mesa, Verstovsek, Deeg, Palmer
MF Breakout – Q&A

You can view the videos HERE. 

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VIrtual MPN patient conference – 20 February

The 12th Joyce Niblack Memorial Conference for MPN patients is being held as a virtual conference on 20 February this year.
Featuring many of the world’s leading MPN experts and researchers, it is a brilliant opportunity for MPN patients to stay up to date with the latest evidence and information on MPNs.
The conference is patient focussed and free to attend. All that is required is to register.
To view videos from the conference, see HERE.

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ASH – American Society of Hematology 2020

2020’s virtual ASH conference hosted some fascinating and ground breaking findings on MPNs.
This information is all courtesy of MPN Hub.



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When did I acquire my MPN?

Dr Jyoti Nangalia and a team of researchers from the Wellcome Sanger institute and Cambridge University in the UK will be presenting some fascinating findings at this years virtual American Society of Hematology (ASH) meeting.

Extensive genetic mapping by the team finds that MPNs “originate from driver mutation acquisition very early in life, even before birth, with life-long clonal expansion and evolution, establishing a new paradigm for blood cancer development. Early detection of mutant-JAK2 together with determination of clonal expansion rates could provide opportunities for early interventions aimed at minimising thrombotic risk and targeting the mutant clone in at risk individuals.”

Information about this presentation is available HERE courtesy of MPN Hub.

Dr Ann Mullally’s lab in the US has recently announced similarly fascinating findings. This research which further explores the cellular origins and development of mutations giving rise to JAK2 and MPNs, provides further evidence that mutations can develop decades prior to clinical presentation of MPNs, and can arise from a single hematopoietic stem cell.

More information on this important research is available HERE


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Videos from ASH (American Society of Haematology) 2019

A summary of the latest information on MPNs from the ASH 2019 (American Society of Haematology) meeting is available, courtesy of MPN Advocacy & Education International.
ASH 2019 summary videos on MPNs

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Ropegintererfon Alfa 2B Approved for Marketing for Treatment of Polycythemia Vera in the EU

Ropeginterferon alfa 2b is a longer acting form of pegylated interferon. It has very recently been approved for marketing in the EU for the treatment of Polycythemia Vera under the name “Besremi”. Read the full news announcement here.

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MPN Clinicians and Researchers meeting – Melbourne 27 April 2017

The day prior to the MPNAE&I Patient Program in Melbourne, Australian MPN clinicians and researchers met with some US counterparts to share knowledge and ideas. In the photo below, Dr Ruben Mesa speaks  about the unmet needs of MPN patients, particularly those with Myelofibrosis. He discussed the role of Ruxolitinib, Interferon and clinical trials. He addressed the question of what would constitute failure of Ruxolitinib treatment, and when it might be appropriate to continue Ruxolitinib despite suboptimal symptom or spleen control, or hematological toxicity in this group of patients. Thanks again to Ann Brazeau and MPNAE&I for making this possible.

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