Archive for category: Patients

Well let’s just say it was an honour to attend the MPN Horizons conference this year.  There was representation from MPN specialists, many MPN advocacy groups, PV, ET & MF patients, pharmaceutical companies and more!  The title “Shifting the treatment paradigms of MPN” was very apt. Since I first attended in 2017, sponsors have grown from 3 to now 11! And patient advocacy groups now include Thailand, Korea, and other nations which previously were not represented.  It is such a growing global family to address MPN needs.

The almost 70 participants in Warsaw, Poland were from an amazingly geographically spread of 26 countries, including Australia, India, Chile, to Europe, America and Asia! All were very vocal in sharing new developments for MPN from research to trials, to advocacy and patient stories. All sharing a key purpose – to make life better for MPN patients.

Before we dived into a massive 3 day program, it was refreshing to attend a breakfast session where Pharma was the lead and seemed genuinely keen to collaborate and bridge the access barrier different countries and patients in need have. The session was called “Navigating the Path to Equal and Equitable Care” to discuss the most important barriers for MPN patients.  I learnt a lot, particularly helpful that there is a special consideration element to access which can be sought with the Pharma company directly for review/access to medications.

This was the third time I have attended Horizons and as a highlight for myself being diagnosed at 18 years of age. I was particularly impressed with the inclusion of a session solely for young MPN patients by Alice Watson from UK. Under the auspices of MPN Voice she has started a group for under 40’s MPN patients to ask questions, address issues such as study/work life balance, starting a family and pregnancy, long term MPN and progression.

The sessions from world leading specialists were very informative.  Dr Claire Harrison spoke on state-of-the-art news for Myelofibrosis – including the new prognostic model; how there are more options available for lower risk MF patients; and how the success of Haplo transpants as an option could be explored. A haematologist from Germany, Dr Susanne Isfort, talked about the 3 common MPNs and the drugs she typically uses to treat them, and about data showing that interferon in young patients may be looked at as an option to stop MF progression.

Jon Mattias from MPN Voice presented a session on a great new application “Health Unlocked” which is in development. This app tracks patient symptoms and data that hopefully could be useful for medical appointments and could be integrated into a wearable device.  This type of app could be rolled out globally – but more needs to happen on 3^rd party permissions and how to protect personal data.

Dr David Ross from Adelaide Australia, spoke on the differences in an individual’s height and gender etc which often isn’t taken into consideration in treating patients. For example, spleen size, depth and volume in a female 5’2 and a man 6’2 can be completely different in what is considered large! He felt spleen volume is more important than just length – something I had never heard of before. There were pictures from Dr Wendy Erber’s lab in Western Australia on machine learning for precise fibrosis scoring which was very interesting.

Elena Greschner from Austria talked about fatigue and how around 80% of MPN patients suffer fatigue.  Yet only about 30% of haematologists ask their patients about fatigue. She stressed the fact that Quality of Life is important (as well as the blood cell numbers). Dr Patrick Harrington mentioned patient data in his MPN research that showed a fifth of MPN patients can only work reduced hours or need to stop work early before retirement age.  Emphasis was placed on being aware of increased clotting risk, infection and organ failure.

Another brilliant session I thought was valuable were the regional breakouts. Being an MPN AA advocate from Australia – ideas for more Asia/Pacific collaboration were bounced around and very positive. I’m looking forward to seeing some of these ideas come to fruition. Perhaps “Chai for Cancer” events at workplaces in Australia borrowed from advocacy group ‘Friends of Max’ in India’s success.

One of the advocates talked about their “March for Cancer” event and how citizen participation was important!  Perhaps we can bring back a lantern walk for MPN and other blood cancer advocacy.  The kids love this!

The importance of a healthy diet and exercise were again highlighted.  I for one will be trying to implement when my symptoms are ok, a more Mediterranean Diet of real foods (hopefully more than packaged and takeaway) and some gentle exercise for 30 mins a few times a week.

All in all the MPN Horizons conference was absolutely brilliant! A wonderfully informative and collaborative 3 days in Warsaw. I’m looking forward to seeing these developments turn into new application and drugs (some in clinical trials already) and much more positive patient outcomes for the future.