The MPN AA is run by MPN patient volunteers.

Lara Chapman

Diagnosed with JAK2 + Essential Thrombocythaemia (ET) at the start of 2008, my disease progressed after a few years to Polycythaemia Vera (PV). During the first five years, I received little information and felt unsupported especially whilst experiencing debilitating side effects from drug treatment. I like many have turned to the internet to seek information and support. In 2013 I felt compelled to set about making real and lasting change for MPN patients in Australia.The Leukaemia Foundation has been supportive in assisting me with the establishment of a local support group and in establishing a dedicated MPN fund to direct funds raised toward MPN activities. In 2014, I undertook a fundraising campaign. With approximately $40,000 raised, $24,000 was donated to MPN Research in Australia, whilst the balance was deposited into the MPN fund within the Leukaemia Foundation. In early February 2015, I acted upon an email that I had received from the Leukaemia Foundation. The Australian Senate had referred the matter of ‘The Availability of new, innovative and specialist cancer drugs in Australia’, to the Senate Community Affairs References Committee, for inquiry and report.I headed a campaign spanning some months, to gather submissions from MPN patients, caregivers and friends. Out of a total of 205 cancer submissions, a collective effort resulted in 30+ MPN specific submissions being put forward. The 17 September 2015 report acknowledged our advocacy for best treatments to be made available and raised awareness of these little known blood cancers. I am proud of this initiative as it has laid a solid foundation upon which further tangible work can be done to progress access to drug treatments through the Pharmaceutical Benefits Scheme (PBS). The committee recommended that the Australian Government initiate a comprehensive review of the system for the registration and subsidisation of medicines. The committee urged that current treatments available overseas, be expedited for listing on the PBS. So too was it noted that patients are affected by harsh side effects from dated treatments. A light was shone on the need for an improved quality of life for Australians living with a diagnosis of a Myeloproliferative Neoplasm. Volunteering for the MPN AA by working with other like-minded patients, has already reaped benefits for the MPN community.

Jolanda Visser

My story with ET began in 2003 when I was just 33 years of age. The diagnosis was made after a blood test was taken to investigate a skin problem I was suffering at the time. I was referred to a haematologist who was quite surprised as he had never seen an ET patient in my age group. I was put on aspirin and the haematologist told me that when my platelet count reached 750,000, I would be required to start Hydroxyurea. I reached this count within 6 months, but as I was not suffering any symptoms, I was not prepared to start medication and I sought a second opinion. Luckily I was then told that I did not need to start treatment purely based on counts, but the new haematologist explained that treatment would be based on symptoms and thrombosis risk. This made sense to me and as I did not have any symptoms, I continued life without any concerns. However, this changed in 2006 when I ended up in the emergency department with a Transient Ischemic Attack (TIA) like event. Shortly after this I started developing very bad headaches, which could not be controlled by any type of standard painkiller. In 2009, I started Hydroxyurea and experienced some relief in my continuous headache. My quality of life improved and life went back to ‘normal’, until September 2013, when I ended up in the emergency department again. I was placed on stroke watch for a few days and was struggling with the increased pain levels I was experiencing. After I was released from hospital, life changed in a significant way for me. My headaches had become worse and I was struggling with blurred vision, severe fatigue and an overall feeling of weakness all the time. My quality of life was badly impacted and I struggled to live a normal life due to the pain I suffered. It was around this time, I started reaching out to other patients to find support and understanding. This is how I met the wonderful people I now know as my MPN Alliance Australia colleagues. Comparing our MPN experiences we discovered that most of us struggled in many different ways but the path to diagnoses and acceptance was similar. A lack of relevant and up-to-date MPN information and understanding, was one of the common struggles we all faced. We therefore agreed that there was a necessity for better MPN resources, patient advocacy and more MPN research, and we formed the MPN Alliance Australia in 2015. Although living with an MPN is not easy, I am grateful for the friendships ET has given me and am happy to see that some of the small achievements the Alliance has worked on, have somehow enriched the lives of other patients. 

Nathalie Cook

I was diagnosed with essential thrombocythaemia (ET) in 2008 and in 2010 my diagnosis changed to polycythaemia vera (PV). Although I had worked as a health professional for over 20 years (currently as a dietitian and previously as a nurse), I had never heard of myeloproliferative neoplasms (MPN) and an internet search showed limited information was available on MPN at that time.
I soon joined the Australian MPN-Oz and US-based MPN-Net email ListServes, where others with MPN kindly shared their knowledge and experiences, helping me feel less alone. In 2011 I attended the Mayo Clinic MPN conference in Arizona, where I learned about a clinical trial that showed the slow acting form of interferon Pegasys®, was effective in controlling blood counts and reducing the JAK2V617F allele burden in MPN, and was better tolerated than the original form of interferon, Roferon®. At that time, Pegasys® was not available on the Pharmaceutical Benefits Scheme (PBS) for MPN and it’s ‘off label’ cost was too expensive for most patients to afford.
Over the next several years I travelled to medical conferences and advocated for MPN patients with Roche and the Government, asking for the PBS listing for Pegasys® to be expanded to include treatment of MPN. This led to Pegasys® becoming available on the PBS for MPN on 1 August 2018, in Australia’s first consumer-led PBS drug listing. This was also the first government approved Pegasys® listing for MPN to occur worldwide!
Since 2013 I have volunteered with the Leukaemia Foundation by writing articles for the Foundation’s patient newsletter MPN News, presenting at patient conferences and advocating for people with MPN. I also work as an Accredited Practising Dietitian (APD) in Community Health in Melbourne.
In 2016 I become a volunteer member of the MPN AA because I believe that as a committed group of MPN patients working in partnership with the Leukaemia Foundation we can increase community awareness of MPN, raise funds for MPN research and help provide accurate and up-to-date information for people living with MPN and their families.

Sue Taylor

In mid 2013, I was diagnosed with JAK2+ ET, through routine blood tests. At that time I was not aware of any symptoms, and was otherwise fit and healthy. The diagnosis sparked an intense curiosity to find out more about these rare diseases. I have since joined a number of online support groups, both overseas and in Australia, and have tried to resurrect my rusty knowledge of statistics and genetics to better understand research articles on the subject. I feel strongly that Australian MPN patients need access to best practice in diagnosis and treatment. I have joined the MPN AA team to help through raising awareness and funding for research, and in assisting patients to feel less isolated with their diagnosis.

a photo of Ken Young MPNAA volunteer he has a beard and is wearing glasses

Ken Young

It is now 20 years since I was diagnosed with Polycythaemia Vera. I had never heard of Myeloproliferative disorders – I even had to ask the oncologist how that was spelt. Like many, I took to the search engines and quickly realised that there was little Australian based information. I set out to rectify this situation by establishing the MPD-Oz email list in September 1998 which currently has 182 subscribers. I have had a long and productive association with the Leukaemia Foundation since 2000 with many MPD-Oz list members contributing to the first edition booklet on Myeloproliferative disorders. Based on this long association with the LF I have become an MPN AA volunteer to promote wider understanding of these rare diseases, to support patients and carers and to find treatment that will one day cure these blood cancers.