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.
PEGASYS UPDATE - GREAT NEWS!!
Roche phoned me on 4th August to update me on the Pegasys for MPN issue. I am delighted to announce that Roche made a PBAC submission in late July, requesting UNRESTRICTED ACCESS of Pegasys on the PBS. This means that if approved, Pegasys will be available for prescription for any indictation, including MPN.
I was told Roche used my submission and added their own work on economic modeling, (which included close discussions with Professor Andrew Wilson, Chair of the PBAC) to prepare their PBAC submission. Interestingly, after Roche's discussions with Prof. Wilson, they have made their submission directly to the PBAC, bypassing the Therapeutic Goods Administration (TGA)! My Roche contact told me this has only ever occured once before, for Rituximab, an oncology/haematology and rhuematoid arthritis drug.
Roche again thanked me for the work I did in my PBAC submission which included references to the scientific literature showing evidence of efficacy for IFN in MPN. I was told that Roche has also obtained feedback from haematologists around Australia on this issue too.
The PBAC have scheduled an out-of-session meeting (not their usual quarterly meeting) in late August, to consider Roche's Pegasys submission. At this stage, (assuming the PBAC approve it) Roche do not know what the timeline is likely to be before Pegasys is listed on the PBS.
I have been invited to Canberra to attend the CanForum with Rare Cancers Australia on 9 August. I am looking forward to meeting with the Roche employees who prepared Roche's Pegasys submission and also look forward to speaking with Professor Wilson.
I am keeping my fingers crossed that Roche's PBAC submission is approved in favour of listing Pegasys for MPN on the PBS so those of you who wish to use this medication to treat your MPN can do so soon, cost effectively. I have been in contact with the Leukaemia Foundation on this too, and they plan to send out information to MPN patients and via the LF Facebook page soon, confirming these developments.
Warm wishes to all...Nathalie
2017 MPN Patient Program – Melbourne, 28 April 2017
The Australian MPN community was given a wonderful gift on Friday 28 April by Ann Brazeau and her team from MPN Advocacy and Education International in the US, together with Drs Ruben Mesa, Laura Michaelis, and Raajit Ramphal from the US, and Drs Cecily Forsyth, Steven Lane, Kate Burbury, David Ross, Wendy Erber, and Andrew Lim (standing in for Prof Andrew Grigg), from Australia.
MPN AA is very honoured that Ann and her team chose to work with MPN AA as co-hosts of this event. Months of planning in collaboration with the MPN AA team culminated in a most wonderful day of MPN presentations for the group of 151 patients, carers, and haematologists.
The level of passion, dedication and care for patients was very evident in each and every one of the presentations, and left us with a feeling of gratitude and awe.
After the formal presentations, patients and caregivers participated in disease-specific group break-out sessions together with the presenters, and had the opportunity to ask questions.
The feedback at the conclusion of the Friday Patient event was overwhelmingly positive. Thanks so much to Ann and Marina (as well as Kathleen behind the scenes) and the wonderful doctors who were willing to cross the vast Pacific to share their knowledge. Thanks also to all the wonderful clinicians and researchers who came from far and wide across Australia. Together you enlightened, empowered, inspired and entertained all those who were lucky enough to be present!
We are very grateful to have access to the videos of the presentations, and to have the opportunity to revisit them.
Here are some more photos from the event!
Joland Visser accepts $1,000 donation to the MPN fund
The MPN AA would like to thank the Big A Boutique Op Shop from the Colonel Light Gardens Church of Christ in South Australia for the generous $1,000 donation they issued the Leukaemia Foundation's MPN Fund.
The Big A Boutique regularly donates part of their proceeds to charities and organisations that want to make a difference by supporting the community.
After accepting the generous donation, MPN AA member, Jolanda Visser, was able to present a talk on MPNs, how patients' quality of life is affected and how the MPN AA is trying to make a difference through advocacy and support.
European Haematology Association (EHA) Conference - Madrid
Haematologist Dr Cecily Forsyth recently attended the European Haematology Association (EHA) conference in Madrid and has kindly prepared a summary of the MPN studies presented at the conference, for MPN AA to share with the MPN community. Many thanks Dr Cecily!
Queensland Coffee Cake and Chat
The Leukaemia Foundation hosted an informal coffee, cake and chat afternoon at the Jindalee Hotel on Saturday 13th May. It was well attended and provided a useful opportunity for those with an MPN to unwind and connect with others.
Medicinal Cannabis Consumer Update
On May 18, Ken Young attended the Medicinal Cannabis Consumer Update organised by the Consumer Health Forum on behalf of the Commonwealth Department of Health and the Australian Advisory Council for the Medicinal Use of Cannabis.
There has been considerable media attention to the decision by the Australian and State Governments to facilitate access to medicinal cannabis products to appropriate patients for medical conditions where there is evidence to support its use. Many people have questions about who is eligible, how they can access the product if eligible and range of other issues around supply, quality etc. The aim of the forum was to try to answer some of those questions by giving general information about medicinal cannabis, evidence around its use and the access pathways including clarification of who is eligible to use it and the process for doing so.
Medicinal cannabis became a controlled drug in the Poisons Standard on 1 November 2016. Medicinal cannabis is a controlled substance that is regulated to prevent diversion and illicit use. For this reason, demand and supply are linked in the regulatory process.
The current medicinal cannabis framework – agreed by the Australian and participating State Governments is:
Medicinal cannabis can be prescribed under the provisions of a controlled drug (Schedule 8) of the Poisons Standard. However, whether medicinal cannabis can be prescribed in a particular jurisdiction depends on whether the state or territory has adopted the change. So just as historically trains gauges changed at Albury there are difference between accessing medicinal cannabis in Victoria and New South Wales!
Individual consumers cannot apply to obtain approval to import and access unapproved medicinal cannabis products. Patients will only be able to access medicinal cannabis if they:
- the state or territory
- the TGA for you to obtain a specific medicinal cannabis product. You can find out more about the process from the TGA website.
Currently in Victoria access to medicinal cannabis is restricted to children with severe intractable epilepsy. With other conditions being considered by an Independent Medical Advisory Committee. The Office of Medicinal Cannabis has been established within the Department of Health and Human Services and is responsible for establishing the Victorian medicinal cannabis framework. You can find out more information at their website.
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.
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 friends, I contacted Roche to enquire about the outcome of their meeting with Professor Wilson, Chair of the PBAC, following Roche's feasibility assessment of Pegasys being made available for MPN's on the PBS. Roche told me there was no definite outcome from this meeting however discussions are ongoing. I will continue to follow developments and report back here when I hear anything more.
Kind regards to all
Dear MPN Community,
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.
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|