Message for patients taking anagrelide

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The MPN AA has become aware of a warning placed on the MPN treatment Anagrelide.

While haematologists would already know about the warning, and be managing patients’ treatment accordingly, the MPN AA wants to also inform any MPN patients taking anagrelide.  The warning states:

SPECIAL WARNING AND PRECAUTIONS FOR USE

Do not stop using anagrelide suddenly without checking first with your doctor.  Rather you may need to slowly decrease your dose before stopping it completely. Stopping suddenly will cause the platelet level in your blood to increase quickly. It should be noted that there is risk of thromboembolic events during this rebound phase which may lead to potentially fatal thrombotic complications, such as cerebral infarction. Platelet counts should be monitored closely when anagrelide is ceased.
The relevant page of our website has been updated, as has the printable PDF treatment document Anagrelide (in English).
We will update the other languages as promptly as possible, hopefully within a couple of weeks.

 

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Inflammation and MPNs

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This presentation by MPN specialist Dr Hans Hasselbalch from Denmark is of great interest to MPN patients.
Whilst the topic is inflammation, and the importance of reducing inflammation, Dr Hasselbalch’s talk is comprehensive.

He explains the latest MPN research findings, including the extraordinary discovery that 11.3% of stroke victims have the Jak2 mutation. He also reminds us of the huge numbers of undiagnosed MPN patients around the world and the possibility of targeting and eliminating the Jak2 mutation when it is in its early CHIP stage.
He explains about the risk of inflammatory bowel disease in MPN patients, the benefit of early intervention with interferon and even a potential role for statins for MPN patients, and so very much more.

His talk is available HERE.

 

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MPN patient conference videos available

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The videos and presentations from the inspiring MPN Horizons 2024 conference in Warsaw, Poland, are now available.
The conference shared the latest advancements in MPN research, treatment, and advocacy from a range of MPN experts.
Two Australian researchers David Ross from South Australia and Belinda Guo from Western Australia were amongst the presenters.  We have linked to a few of the presentations most immediately relevant to MPN patients:

ET

PV
  • State of the Art in PV
    Jean-Jacques Kiladijan (Virtual) – Video
  • Pipeline for PV
    Susanne Isfort  –Video, PDF
MF
And if you’re interested in research and future MPN drug treatments, the rest of the videos and presentations are available to watch HERE.
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Pegasys® delivery update for regional patients

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The company delivering Pegasys®, JustMeds, has advised that they are now able to deliver Pegasys® to regional patients in cold chain validated shippers.

These shippers are specially made to keep your Pegasys® between 2-8 degrees for 96 hours.

The shippers need to be returned for your next delivery and the instructions for their return are on the box – see photo below.

And just a reminder that Pegasys® for all Australian patients can now be ordered and reordered online at
https://www.justmeds.com.au/send-your-script

         

 

 

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Pegasys: new way for Australians to order via online link

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The company dispensing and arranging delivery for Pegasys® has set up an online ordering link to speed up the ordering process for Australian patients.

This should save patients time and effort and enable patients in Australia who need their Pegasys urgently to get through to the dispensing team.

The link to order can be accessed HERE.

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Additional genetic mutations in MPNs: impact on prognosis

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An important study of genetic mutations in MPNs and their impact on prognosis has just been released in ‘Leukaemia’, titled “Characterization of myeloproliferative neoplasms based on genetics only and prognostication of transformation to blast phase.”

The authors state “By conducting a thorough genetic analysis, we’ve developed a model that relies on 12 genetic markers to accurately stratify MPN patients. The model can be simplified into a decision tree for routine use.”

“Our data suggest to perform a broader genetic screening at diagnosis and also at clinical progression, as driver mutations may change and the MPN-driver mutations present at diagnosis may disappear.”

Their conclusion is “Consequently, expanding genetic analysis beyond JAK2, CALR, and MPL at diagnosis is crucial for accurate MPN classification, early high-risk patient identification, and timely intervention.”

This important study can be freely accessed HERE.

 

 

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Pegasys® patient ordering information

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We thought it might be useful to provide a direct link to the patient information for ordering Pegasys® – see below.

Please note that there is currently an issue with the phone number provided on the form.
If you need to call as part of your ordering, please use the following number for now.
02 5850 0794

PATIENT INFORMATION FOR ORDERING PEGASYS®

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Pegasys supply update October 2024

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Echo Therapeutics Pty Ltd. has asked us to share this update about Pegasys® with Australian patients.
It is about “an anticipated shortage of Pegasys® in Australia.”

See attached letter from Echo Therapeutics for more details.
Pegasys anticipated shortage letter

This shortage notification appears on the TGA website as an anticipated shortage with supply impact dates shown as March 2025 to June 2025.

The TGA alert notes that “The sponsor is closely controlling the supply. This medicine can be accessed through the Pegasys Home Delivery Program.”

Webinar: empowering conversations – with oncologist Dr Ranjana Srivastava

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The video from the Leukaemia Foundation’s latest webinar is now available.
It features Dr Ranjana Srivastava OAM, a medical oncologist, who has loads of helpful practical advice about how to communicate well with your doctor.

The webinar covers:

  • How doctors communicate with their patients
  • How to convey your communication preferences
  • Talking about your values and preferences for care
  • How to use these suggestions for your unique situation
  • Managing future planning during recurrence / progression
  • The importance of having an Advance Care Directive

The video of the webinar is available HERE.

Change to Pegasys access in Australia from 1 September

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For anyone in Australia who is currently being prescribed Pegasys® (peginterferon alfa-2a) as a treatment for MPNs, the MPN AA wants to update you on some important changes to how you will be able to access this medicine moving forward.

While many of you will have been getting Pegasys® dispensed at a local pharmacy, this will start to change from 1 September 2024, with a new Pegasys® Home Delivery Program coming into effect.

This program is delivered by Echo Therapeutics (the sponsor of Pegasys® in Australia) through its EchoCare™ service, in partnership with JustMeds – a local specialist medicines delivery provider.

This means you will now have Pegasys® delivered directly to your home, workplace or another location, rather than having go into a pharmacy to pick up your medicine.  Importantly, 1 September is not a hard deadline to switch over to the new home delivery program. We know it may take some time for people to adjust to this new process, so there is flexibility built in for you to be able to transition across to the Pegasys® Home Delivery Program at the right time for you.

Echo Therapeutics has engaged with doctors and nurse practitioners who are involved in the management and care of people with MPNs, along with the Therapeutic Goods Administration (TGA). Pharmacists have been informed about these changes and will be aware of the new process.

This Pegasys® Home Delivery Program is a short- to medium-term solution.  It will be in place until Echo Therapeutics is satisfied the local supply chain for Pegasys® is more intact and there is a lower risk of unauthorised export.  Once confirmed, it is expected that Pegasys® will become available in retail pharmacies again.

You can find more information about this in the letter attached, and step by step guides on how to access Pegasys through the JustMeds partner provider. https://www.justmeds.com.au/pegasys

Alternatively, you can email rx@justmeds.com.au for more information.

As you know, MPN AA does not promote or recommend specific treatments for people living with MPNs. Decisions about any treatments should be made in careful consultation with your haematologist, after taking into account the potential benefits and side effects for each person’s individual circumstances.

Kind regards,
MPN AA Team

Patient Communication Letter from Echo pharmaceuticals re Pegasys

 

 

 

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