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MPN AA News

                 

 

The MPN AA is always on the lookout for the latest news and research on MPN. Relevant information will be shared on this website to better support patients and their carers.

 

Alan Mead

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

MPN Education Foundation

I have just been lucky enough to attend the MPN Education Foundation biennial Conference at the Mayo Clinic in Scottsdale, Arizona, in a private capacity. I was one of two Australian MPN patients, accompanied by our partners.

It is impossible to summarise the whole conference in a few words. The tireless volunteer organisers from the MPN Education Foundation did a truly wonderful job, and provided an extremely hospitable, welcoming and professional atmosphere for all those who participated.

The 16 expert presentations, two panel discussions, and disease specific break-out sessions, were enough to answer most of my questions, and many more that I had never thought to ask. The expert presenters were incredibly generous with their knowledge and time, and joined patients during the breaks to answer individual questions, whilst trying to juggle their lunch and catch up with their colleagues. Exhausting doesn’t begin to describe it, even though we tried to have early nights, especially factoring in the jetlag and the 6.30am breakfast starts each morning, which we chose to reach by walking through the crisp 5 degree air from our desert hotel.

I think apart from the excitement of hearing of the research and developments in the pipeline, I was so inspired by the passion that was so evident in the presenters, and the thought that there are such wonderful people looking out for those of us with MPNs. They are incredibly knowledgeable, but the other message that came through loud and clear to me is that “its complicated” – a refrain used by many of the doctors when queried about particular scenarios. What I noticed is that they were not afraid to say if they didn’t know, or to admit that there IS a lot that they don’t know yet. During the question panels, it was also interesting that they didn’t always agree with each other, and they acknowledged that there may be trial and error, and a lot of careful judgment needed in both diagnosing and treating MPN patients. Treatment should be individually based on a holistic assessment of the patient including blood counts, but importantly symptoms and quality of life issues.

I was privileged to meet many of the wonderful presenters, including Prof Claire Harrison from the UK, Dr Richard Silver, Susan Leclair, and especially Drs Ruben Mesa and Laura Michaelis, who will be coming to Melbourne in April for the inaugural MPN Patient Conference in Australia, which will be co-hosted by MPNAA and MPN Advocacy and Education International.

Even with all those positives, probably the most special thing about attending the Conference in Scottsdale was meeting so many patients and their partners/ supporters, who were all willing and keen to share experiences, especially those whose posts and emails I have seen on various MPN fora.

For more details on the Scottsdale Conference, visit mpninfo.org.

 Sue Taylor

PEGASYS on the PBS for MPN

PBAC to consider PEGASYS submission at 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. 

Follow up regarding PEGASYS® on the PBS for MPN

Dear MPN Community,
I received a letter from Professor Andrew Wilson, Chair of the PBAC, in response to my submission requesting Pegasys® (Interferon Alfa-2A) listing on the PBS for MPN.
Professor Wilson stated he and his PBAC colleagues agree there is a need for interferon based therapies in MPN treatment in Australia. He said however, the PBAC cannot recommend a drug to the Health Minister for PBS listing until the manufacturer/sponsor of that drug:
1) Applies for Therapeutic Goods Administration (TGA) approval for the drug for the particular indication (in this case MPN); and,
2) Puts in a submission to the PBAC for PBS listing of the drug (for that indication), with supporting clinical data.
To date, Roche has not applied for TGA listing of Pegasys® for MPN or lodged a submission to the PBAC asking to have Pegasys® listed on the PBS for MPN.
As recommended by Professor Wilson, I have contacted Roche regarding the two points above and the Department of Health has done the same. I have also contacted Rare Cancers Australia on this issue and they have offered to help follow up with Roche. I will keep you informed when I hear any further developments.
Best wishes to all,
Nathalie Cook

Conference 2017

Your chance to listen to Dr Ruben Mesa & other international and Australian MPN experts in Melbourne in 2017. Save the date more information will follow. Pre-register at https://goo.gl/NgFjKK.

Download the conference flyer here.

 

MPN Horizons Conference

Jolanda Visser attended and presented at the inaugural MPN Horizons Conference in Serbia in early November 2016. The conference provided an opportunity for MPN Patient Representatives and Advocates to meet, discuss the issues facing MPN patients around the world and to share best practice from local groups.

Jolanda was selected to give a presentation on the set up of the MPN Alliance Australia:

 

In addition, she prepared a poster for display throughout the 3 day conference. The poster was based on the “4 pillars of strength” in the MPN Alliance Australia.

Download Jolanda's presentation here (PDF 15132kb).
Download the poster here (JPG 595kb).

 

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:  https://goo.gl/W5d3fP.

If you are not a subscriber to The MPN Advocacy and Education International newsletter sign up here:  http://mpnadvocacy.com/contact/

MPN AA update

On Monday 8 August, 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.

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)

Rare Diseases Day - Queensland

On Rare Diseases day, 29 February, 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.

Partnership between MPN AA & Leukaemia Foundation announcement 
Leukaemia Foundation – MPN specific newsletters