Call for PBAC submissions to make Jakavi available for PV patients

Novartis is proposing to the Australian Pharmaceutical Benefits Advisory Committee that Jakavi (ruxolitinib) be made available on the PBS for patients with polycythemia vera (PV).
Currently Jakavi is on the PBS for patients with myelofibrosis in certain circumstances.

The use of Jakavi by Novartis is proposed for PV patients in certain circumstances – that is, where a patient is resistant to or intolerant of hydroxycarbamide (also known as hydroxyurea or Hydrea).
The letter from Novartis to MPN AA’s Nathalie Cook and Ken Young provides further information on Novartis’ proposal. Novartis PV letter_Aug_2019

The Pharmaceutical Benefits Advisory Committee (PBAC) has opened a call for public submissions.  Submissions can be made up until 9 October 2019.

If you wish to make a submission, here is the link.




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Next Canberra MPN Coffee and Chat – 16 June at 10.30-12

We have a delightfully supportive and friendly group of MPN patients in the Canberra region so if you live in or around Canberra, please come and join us.
There is always a great deal of news to share, experiences to recount, even sometimes blood test results to discuss!

We are meeting in a lovely warm room at the Peppers Gallery Hotel in new Acton to survive these chilly Canberra mornings and the coffee is excellent.
Our next get together is on Sunday 16 June from 10.30-12.  We hope you can join us.

More details are available HERE

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MPN AA supporting research into a new way to treat iron deficiency symptoms for PV patients

MPN AA is supporting MPN research at Melbourne’s Peter MacCallum Cancer Centre and Walter & Eliza Hall Institute of Medical Research, investigating a new way to treat iron deficiency symptoms and improve quality of life for people living with polycythaemia vera (PV). 100% of all tax deductable donations to MPN AA from now until the EOFY will go towards this important research.

Please use this link to make a tax deductable donation to this study:…/donate.aspx…

This study is led by haematologists A/Prof Kate Burbury and Dr Sant-Rayn Pasricha, and medical scientist Dr Cavan Bennett.

Here is a lay summary of this study provided by the researchers:

‘Polycythaemia Vera (PV) is a myeloproliferative neoplasm (MPN) in which overproduction of red blood cells leaves patients at risk of complications including blood clots. PV affects ~15,000 Australians. The mainstay of treatment is venesection (blood withdrawal) which removes excess red blood cells and induces iron deficiency (iron is critical for the production of new red blood cells). However, venesection requires insertion of a large needle which can cause discomfort and bruising, is inconvenient as it requires patients to attend a clinic or day centre for care, and can cause fluid shifts which are difficult to manage. Finally, venesection induces total body, rather than blood specific, iron deficiency which can produce adverse effects (such as fatigue, restless legs, and cognitive dysfunction) that impair quality of life.

Iron levels are therefore critical in PV, and are regulated by specific hormones. We believe manipulating iron levels could be used as a protective mechanism to reduce the excessive red blood cell production in PV. Using a series of experimental models, we will uncover the mechanisms of iron regulation specific to PV patients and learn how these can be harnessed to help treat the disease. We will use a novel therapeutic (that is more convenient and predicted to have less side effects than conventional venesection) to manipulate iron levels and study whether this can treat the disease. We expect that the results of our studies will directly lead to a clinical trial for a new class of drug in the treatment of PV.’

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Video presentations available from the Joyce Niblack Memorial Conference on MPNs, 2019

You can now watch the video presentations from the 11th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms , 2-3 March 2019, Scottsdale, Arizona.  The powerpoints of the presentations are also available to read online.
This biennial patient conference is organised by the MPN Education Foundation in the USA, and features presentations by many of the world’s leading MPN experts, including Dr Ruben Mesa, Dr Tiziano Barbui (Italy), Dr Joachim Deeg, Dr Claire Harrison (UK), Dr Jean J Kiladjian (France), Professor Richard Silver, Dr Robyn Scherber and many others.

These presentations are available

Antje Hjerpe and the team at MPN Education Foundation have done an outstanding job once again to provide this resource to MPN patients and others with an interest in MPNs.

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New study: Burden of Myeloproliferative Neoplasms in Australia revealed

New research led by Cancer Council Queensland and Curtin University has investigated the patterns and trends of myeloproliferative neoplasms (MPN) for the first time in Australia.

The research, published in the American Journal of Hematology, explored the impact of MPN, which affects more than 5000 people in Australia currently, and found that the diagnosis and survival rates of these blood cancers are very similar to those found in recent studies in Europe, the United States and Asia.

Between 2003 and 2014, 8604 Australians were diagnosed with a classic MPN, with a median age of diagnosis of 68 years. About 80% of people diagnosed with MPNs will still be alive five years later.

Co-author Professor Peter Baade, from Cancer Council Queensland’s Viertel Cancer Research Centre, explained that prior to the study there had been no Australian data describing the burden of MPN in Australia.

“Our study adds to a body of data from multiple countries, showing an apparent change in incidence patterns of myeloproliferative neoplasms,” Professor Baade said.

“While the incidence of MPN has been declining since 2003, which is mostly due to a declining incidence of one type of MPN, polycythemia vera, the rates have increased for another subtype,  essential thrombocythemia.

“The reason for these observed trends, particularly the declining diagnosis rate of polycythemia vera, are still unexplained, but may reflect changes in clinical investigation and registry reporting practices rather than a true change in incidence.”

Study co-author John Curtin Distinguished Professor Lin Fritschi, from the School of Public Health at Curtin University, explained that changes in testing for specific genetic mutations may explain some of the trends.

“The specific gene mutations in MPNs have only been identified in the last decade and we now have tests for these genes; this has meant that many of the cases of MPN are diagnosed with blood tests and are not always picked up by the cancer registries,” Professor Fritschi said.

“This change in practice may be responsible for a reduction in reported MPN rates.

“Further research using accurate population-based data, including the collection of genetic information, is needed to assess the impact of changes in clinical practice in Australia.”

The research also involved researchers from University of Adelaide, Queen’s University and Northern Ireland Cancer Registry and Gosford Hospital.

The research paper, ‘Changing incidence of myeloproliferative neoplasms in Australia, 2003-2014’, can also be found online via the American Journal of Hematology:

More detailed information about this research is available from this attachment.  Research findings suppl info

A huge thank you from the MPN AA to all the researchers involved in this study and of course the Queensland Cancer Council and Curtin University.

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MPN Interferon Initiative Report

On the 30th November, Lara Chapman represented the MPN Alliance Australia as an invited guest, at the 2nd Annual ASH Meeting, hosted in San Diego by the MPN Research Foundation. The MPN AA would like to thank our partner organisation, MPN RF, for the invitation. We appreciate the opportunity to follow up on the progress being made on this project on behalf of the donors who have supported the MPN AA.

The meeting convened to hear updates on the progress from the Grantees of the MPN Interferon Initiative. Although, the meeting was very scientific as researchers reported to their peers, the overarching feeling as an observer, was one of positivity and hope for new information and progress being made. As a patient, it was encouraging to witness the sharing of information and respect amongst the scientific community. Project Manager, Mr Richard Winneker and the MPN RF are to be congratulated on establishing such a positive research environment, and we can only hope that through sharing of resources and information, that greater progress and outcomes will be forged.

The MPN AA contribution to the MPN Interferon Initiative directly supports research here in Australia. Dr Steven Lane’s laboratory is based in Brisbane. Dr Lane (QIMR Berghofer Medical Research Institute) collaborates with Dr Ann Mullally (Brigham & Women’s Hospital) and Dr Michael Milsom (German Cancer Research Centre).

The aims of their project are outlined in the slide below.  (IFN refers to Interferon).

Achievements in the first 12 months are:

  • Validated CRISPR/Cas9 in vivo gene editing studies to develop and validate clinically relevant models of MPN disease progression (published)
  • Mechanistic understanding of interferon on Jak2 V617F stem cells (completed/ manuscript in preparation)
  • Acquisition and validation of Ropeginterferon (experiments ongoing)

Of particular interest is the finding that Ropeginterferon to date has shown superior durability of action, tolerability and efficacy compared to Pegasys and other forms of Interferon.

We look forward to hearing more as the project progresses.

Lara Chapman


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