BREAKING NEWS: PBAC has recommended the government change the listing for Pegasys® to UNRESTRICTED ACCESS

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Dear Friends,

Roche phoned me today to announce the Pharmaceutical Benefits Advisory Committee (PBAC) recommended in it’s November 2017 meeting that the Government change the PBS listing for Pegasys to UNRESTRICTED ACCESS, to enable MPN patients to obtain Pegasys on the PBS (and also other blood cancers, such as myeloma and lymphoma.) The PBAC November meeting recommendations were published today online. (See page 13).

The next step in the process is for the PBS and Roche to negotiate and agree on a price for the Australian Government to pay Roche for Pegasys to be on the PBS for MPN. Once this agreement has been finalised, Pegasys will be listed on the PBS for MPN and patients will pay $36.00 per script instead of about $1800.00 per script. Roche were unable to give me an exact time frame for when we can expect
to have Pegasys listed on the PBS for MPN, but I was reassured Roche and the PBS are working hard towards this end. Given the time of the year, it’s likely to be a couple of months delay over the holiday period until this work can resume, and then a bit longer to wait until it is actually on the PBS.

I have been campaigning to have Pegasys on the PBS for MPN since 2011 by contacting Roche Products, my local MP, Josh Frydenberg, the Health Minister and the PBAC. In Nov 2016 I wrote a submission to Prof. Andrew Wilson, Chair of the PBAC after meeting him in Canberra at the Rare Cancers Australia forum earlier that year, and explaining to him the unmet need of MPN patients to treat their disease
with Pegasys. Following this meeting, I wrote my PBAC submission on Pegasys for MPN, (which included extensive references to published literature on Pegasys for MPN). Before logding my PBAC submission, I sought advice from several haematologists who reviewed my  submission. The Health Minister and Prof. Wilson wrote back to me in early 2017, advising my submission had been accepted for
consideration. The issue was then considered at the March, August and Nov 2017 PBAC meetings. In the meantime, I have been in contact the Roche Products throughout the process. Thank you to all who submitted consumer comments via the PBAC online portal, in support of my submission to Prof. Wilson, Chair of the PBAC. Our voices have been heard and history has been made! Hurray!!!

I wish everyone a wonderful holiday season and a very happy New Year in 2018, in which specialists in Australia will be able to prescribe Pegasys for their MPN patients via the PBS, and patients will only need to pay the PBS amount of $36.00 per script.

Kind regards,  Nathalie Cook

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MPN Online Charity Art Exhibition raises $14,788

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The MPN Online Charity Exhibition was conceived by artist Lara Chapman, with the aim of raising awareness (and funds) for a little known rare group of blood cancers called ‘Myeloproliferative Neoplasms’ (MPNs). There is no cure and very limited drug therapies. Lara’s goal was to raise funds to contribute toward a research project.

Lara herself lives with a Polycythaemia Vera, one of the MPNs, and has founded a patient volunteer group known as MPN Alliance Australia, working independently under the umbrella of the Leukaemia Foundation of Australia.

The MPN Online Charity Art Exhibition was curated by Amber Creswell Bell and all works were generously donated by a group of amazing local artists, with 100% of money raised going directly to the MPN Fund of Leukaemia Foundation of Australia. Over 55 artworks were donated including one by Suzette from the MPN community – with 31 sold.

A total of $14,788.53 was raised and was used to support research into MPN.

The Online Charity Art Exhibition also served to raise awareness of MPN.  Creative Lifestyle blogger Lisa Tilse is passionate about making with our hands and hearts and promoted not only the Exhibition, but awareness of MPNs. You can follow her post here.

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Pegasys® Update – Great News!!

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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

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Jolanda Visser accepts $1,000 donation to the MPN fund

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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.

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European Haematology Association (EHA) Conference – Madrid, 2017

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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!

View Dr Forsyth’s summary here.

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Medicinal Cannabis Consumer Update

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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 is medicine to be available on prescription only
  • produced to quality standards
  • with patient access through the Therapeutic Goods Administration (TGA) protocol for unapproved medicines

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:

live in a state or territory where it is not a prohibited substance
obtain a prescription from an appropriate medical practitioner, who obtains permission from:

  • 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.

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Queensland Coffee Cake and Chat

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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.

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MPN Clinicians and Researchers meeting – Melbourne 27 April 2017

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The day prior to the MPNAE&I Patient Program in Melbourne, Australian MPN clinicians and researchers met with some US counterparts to share knowledge and ideas. In the photo below, Dr Ruben Mesa speaks  about the unmet needs of MPN patients, particularly those with Myelofibrosis. He discussed the role of Ruxolitinib, Interferon and clinical trials. He addressed the question of what would constitute failure of Ruxolitinib treatment, and when it might be appropriate to continue Ruxolitinib despite suboptimal symptom or spleen control, or hematological toxicity in this group of patients. Thanks again to Ann Brazeau and MPNAE&I for making this possible.

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MPN Patient Program – 28 April 2017

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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, together with Drs Ruben Mesa, Laura Michaelis, and Raajit Rampal from the US; and Drs Cecily Forsyth, Steven Lane, Kate Burbury, David Ross, and Wendy Erber, and Andrew Lim, (standing in for Prof Andrew Grigg), from Australia.

Months of planning culminated in an outstanding educational event for the group of over 150 Australian MPN patients, caregivers and haematologists.

We all expected great things from the US contingent, and they certainly delivered. We were also extremely impressed by the presentations from our home-grown haematologists. The level of passion, dedication and care for patients was very evident in each and every one of the presentations.

After the formal presentations, patients and caregivers were able to ask questions of the presenters in disease-specific break-out sessions.

I think for patients and caregivers ranging from the newly diagnosed to the old hands, everybody learned something, and valued the opportunity to share with patients and professionals during breakfast, lunch, and the wonderful Mix and Mingle event at the end of the day. If we didn’t finish all that wonderful food, it was only because we were so busy talking!

Given the amount of information which was presented on the day, I am looking forward to seeing the video of the presentations, to have the opportunity to revisit it.

Together with my MPNAA colleagues, I felt privileged to have had the opportunity to listen to the clinicians in their meeting on the Thursday afternoon, as we gained insights into the challenges of diagnosis and treatment of these complex blood cancers.

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 and entertained all those who were lucky enough to be present!

I feel so inspired.

Sue Taylor

Videos of the presentations are available here.

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Why MPN AEI came to Australia!

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By Ann Brazeau, CEO, MPN Advocacy and Education International

MPN Advocacy and Education International hosts several patient/caregiver educational programs per year. Although most take place in the United States, their goal to expand to other countries where MPN groups are interested in partnering to benefit their MPN Communities has been a priority.

Through collaboration with the MPN Alliance Australia, the first patient/caregiver program was held in Melbourne on the 28th April, 2017. MPN specialists from Australia joined U.S. specialists to share up-to-date, relevant information to over 150 patients and caregivers.

Empowering patients with the knowledge they need to better understand the complexities of MPNs, is what MPN Advocacy and Educational International hopes to achieve at these events. Partnerships are essential to the success of these very important programs. Imparting valuable, reliable information to the MPN Communities around the world helps bridge the gap to understanding what is being done, and identifying unmet needs.

In the early days of my work in MPN little was being shared among researchers and academic institutions. Today, it is a common practice. Recognizing the importance and value in collaborating, researchers and clinicians are much more amenable and grateful for opportunities to share their experiences and findings. Thus, a physician/researcher meeting was held the afternoon before the patient event.

A half-day strategy meeting with the MPN Alliance Australia proved to be meaningful and productive. Their dedication and commitment to the patients and caregivers in Australia is evident in the many hours they volunteer each week.

We are proud to have been a part of this experience and were happy to pull this event together with our partners, MPN Alliance Australia.

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