Podcast – Nathalie Cook’s Pegasys story

The Leukaemia Foundation has just launched Season 2 of their ‘Talking Blood Cancer’ podcast series.

We are delighted to let you know that the first podcast features the MPNAA’s own Nathalie Cook. She shares her own MPN story and her success with using Pegasys (pegylated interferon) for controlling her blood counts.

Nathalie played a pivotal role in having Pegasys listed onto the Pharmaceutical Benefits Scheme here in Australia. It has been available to patients on the PBS since 2018.

You can listen here to Nathalie’s Pegasys story



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Patient Power interview with Nathalie Cook and Ken Young

Andrew and Esther Schorr from Patient Power in the USA have long been strong advocates for patient knowledge and empowerment. They recently visited Australia and New Zealand as part of their advocacy work.

As Andrew has an MPN (myelofibrosis), he very much understands the issues and challenges involved in living with an MPN.  He and Esther met with many Australian and New Zealand MPN patients and some haematologists. Andrew and Esther have prepared a video about two of those patients’ experiences with advocacy,  MPN AA’s Nathalie Cook and Ken Young.  The video discusses in particular the interferon story and all the effort involved in listing Pegasys, a pegylated-interferon, which is a longer longer-acting formulation of Interferon alpha, onto the Australian Pharmaceutical Benefits Scheme.

The video of their interview is available HERE.


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Pegasys® (pegylated interferon alfa-2A) listed on PBS

We are so proud of you Nathalie, and so thankful for your huge efforts on behalf of the MPN community in Australia. Your passion, networking and intellectual rigour have absolutely got us to a place no one thought we would ever reach. We as a community have been told so many times in the past that this could never happen, and without you, it would not have. Many patients will benefit from your achievement of successfully advocating for an affordable alternative drug therapy for MPNs.

We would also like to acknowledge others who have contributed on behalf of the MPN community over the years to make pegylated interferon available and affordable for patients in the recent and more distant past. These include Ken Young many years ago (together with the late patient advocate Ian Sweet); Lara Chapman who encouraged and assisted the MPN community with making submissions to the Senate Committee Inquiry into the Availability of New, Innovative and Specialist Cancer Drugs In Australia in 2015; a small number of very dedicated haematologists; the Leukaemia Foundation; Rare Cancers Australia; and of course all those MPN patients and advocates who made submissions to the Senate Committee Inquiry and supporting submissions to the PBAC.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead

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

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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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

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Follow Up – 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

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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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