PBAC to Consider Pegasys® on the PBS for MPN

PBAC will consider PEGASYS submissions at their meeting on 8th March 2017

Submissions to PBAC in support of having PEGASYS listed on the PBS for MPN have now closed. The MPN Alliance Australia would like to thank the MPN community for their submissions. In addition, we would like to thank the Leukaemia Foundation, as well as the numerous haematologists who put in submissions supporting this initiative. Your support and efforts in getting behind this campaign are greatly appreciated. If this change happens, it will be wonderful for the MPN community and improve quality of life for many.

We will be following up with PBAC following the meeting and will let everyone know the outcome.

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Alan Mead – Obituary

The MPN AA notes, with regret, the passing of MF-champion Alan Mead on 6th February 2017. Alan was an MPN sufferer. He was inspirational in championing the cause to raise awareness of Myelofibrosis in Australia. He set up a website in 2010 and provided a point of contact for many people suffering from MF.

Our deepest sympathies to his family and friends.

“What we do for ourselves dies with us. What we do for others and the world remains and is immortal.” Albert Pine

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MPN AA Update

On Monday 8 August 2016, members of the MPN AA attended a meeting with other advocates and stakeholders within the MPN Community, hosted by the Leukaemia Foundation of Australia in Brisbane. The meeting was chaired by Bill Petch, LFA CEO, assisted by Anna Williamson, Head of Research and Advocacy, Anthony Steele, Head of Blood Cancer Support, and Barbie Hartigan, Blood Cancer Support from LF Queensland Office. We were also very fortunate to have Dr Cecily Forsyth, Haematologist from Gosford NSW in attendance.

The aim of the meeting was to bring together interested parties to work towards a cohesive plan to improve the lives of MPN patients in Australia, identifying priorities, gaps, and a wish list.

We thank the Leukaemia Foundation for their generous hospitality and support for the meeting, and for their willingness to engage with the MPN Community to discuss the ongoing issues of MPN patients whose needs are different from those with acute blood cancers.

Myeloproliferative Neoplasms are rare and incurable. However, for the thousands of people that live with these chronic blood cancers, the challenges are very real.

We very much look forward to working together with other stakeholders into the future.

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Rare Diseases Day – Victoria

On Rare Diseases Day, 29th February 2016, 13 people with MPNs gathered in Melbourne’s CBD for lunch at the Chestnut Exchange Cafe on Little Collins Street. A wonderful day was had by all as participants chatted from late morning, enjoyed lunch together and some stayed until well into the afternoon, as time permitted. It was a great opportunity to share and compare personal experiences of MPN disease sub-types, symptoms, treatment modalities, complications and discuss the impact of living with MPNs. The day provided a chance to meet up with old friends and also to put faces to names for those who had not yet met, but may have communicated previously via electronic media.

Meetings such as this enable people living with MPNs to build social connections and support one another, which helps to reduce feelings of isolation commonly experienced by people living with rare chronic diseases.

Special thanks to everyone who attended. To those who were not able to make it on the day, we hope to see in the future at another MPN get-together.

Best wishes and good health to all. Nathalie Cook (PV)

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Rare Diseases Day – Queensland

On Rare Diseases day, 29 February 2016, a group of Queensland MPN patients
met for lunch at Toscani’s Garden City to raise awareness for Rare Diseases
Day, where ET, PV & MF were all represented.

It was an animated gathering, leaving little time to eat lunch between
sharing stories and experiences.

For one ET patient, this was her first connection with an MPN support
group. She shared how she was diagnosed and also how she has a Son who has also
been diagnosed with an MPN. She spoke of her concern for his future and took
comfort from others who have been living with MPN’s for many years. She is also
looking forward to joining our MPN Coffee, Cake and Chat meetings hosted by the
Leukaemia Foundation QLD.

For the others, this was a time to catch up on each others progress,
treatments and generally offer support to each other.

On behalf of the group members who met, a special thanks to the staff at
Toscani’s Garden City for their very attentive care throughout the day.

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MPN Advocacy and Education International

We are excited that the latest MPN Advocacy and Education International newsletter has a distinctly Australian feel, featuring two patient stories of MPNAA members. One story is about Brisbane-based Lara Chapman and the second story is about Melbourne-based Ken Young.

Here is the link

If you are not a subscriber to The MPN Advocacy and Education International newsletter sign up here.

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