Courtesy of Ann Brazeau of MPN Advocacy and Education International, here is a wonderful summary video of the MPN highlights from the December 2024 American Society of Haematology (ASH) meeting provided by Dr Ruben Mesa.
Watch the video HERE
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 3rd 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.
Here is an Australian news item about the US FDA approval of Momelotinib, a new drug for Myelofibrosis. This is significant as there are few treatment options for those with myelofibrosis, and this is another option for those for whom other therapies are unsuitable. We would love to see it made available to Australian patients in the future.
A study has been released on the incidence of polycythemia vera in Taiwan for 2016-2017.
This report is of interest due to its large sample size of 2647 PV patients and because it covers a wide array of information, including treatments and mortality figures (although noting that interferon treatment was not readily available in Taiwan in 2016-2017).
In the Taiwanese study, PV incidence rates were estimated to be 2.41 and 2.65 cases per 100,000 people in 2016 and 2017, respectively.
In Australia, the reported incidence of PV from 2007 to 2016 was 1.4 cases per 100,000 people. This is based on Australian state cancer registry data, substantially lower than Taiwan and several other countries. It is suspected that in Australia, not all PV was being reported during that period. This is likely due to some inconsistent reporting practices in states and territories as well as bone marrow biopsies not always being undertaken. (A bone marrow biopsy diagnosis is automatically reported to cancer registries.)
Of further interest is that this Taiwanese study compares PV incidence and prevalence data from other countries. The rate of PV in the USA is much higher than in other countries. This study will be useful for Australian researchers when comparable Australian data becomes available later in 2023.
The study concludes …..
‘This nationwide cross-sectional study provides a snapshot of the real-world clinical landscape of PV in Taiwan. This study reported a number of patient characteristics that were found to be different to the Caucasian populations reported in previous studies, which may provide some evidence that warrants further investigation into the genetics of PV among racial groups. This study also reported several similarities and differences of treatment patterns compared with other countries reported in previous literature.’
The full article is available at Real-world patient characteristics and treatment patterns of polycythemia vera in Taiwan between 2016 and 2017: a nationwide cross-sectional study
European haematologists have been undertaking ongoing studies of MPN patients who have contracted COVID. This study covers the second COVID wave of 304 MPN COVID cases from 39 different hematology centres. Their findings are outlined in just released (January 2022) correspondence in the International Journal ‘Leukemia’. Importantly, they found a relatively higher risk from COVID for patients over 70, more thromboses in ET patients and a need for permanent surveillance of MPN patients who have survived the acute phase of a COVID infection.
‘Patients of the second wave presented, compared to those of the first, with a less severe disease, including a lower degree of inflammation, leading to hospitalization in a smaller percentage of cases. Overall, the mortality rate was significantly lower, likely due to early COVID-19 diagnosis, facilitated by the greater availability of swabs than in the first wave, more efficient management of infected patients, better prepared health systems and preferential protection of older and higher-risk MPN vulnerable subjects.’
‘However, patients over 70 years still presented with an excess of mortality, particularly when associated with comorbidities and an MF phenotype. Unfortunately, no data are available so far in our series to support a role of vaccinations. The high thrombosis rate in patients with ET was confirmed, suggesting that in this MPN phenotype regimens of antithrombotic prophylaxis in addition to heparin should be explored. Also in the second wave, but to a lesser extent than in the first, the health consequences of COVID-19 protracted far beyond acute infection, suggesting careful and permanent surveillance of patients with MPN who have survived the acute phase of SARS-CoV-2 virus infection.’
The full article has been made available HERE.
MPN patients are fortunate to have access to videos and presentations from the 12th Joyce Niblack memorial conference on MPNs which features the world’s leading MPN experts. It was held virtually in February 2021 and explains the latest developments in MPNs around the globe.
The information is specifically presented for MPN patients.
We thank the MPN Education Foundation for making these videos available to MPN patients and their families.
|
Dr. Ruben Mesa & Dr. John Camoriano
|
Conference Dedication and Welcome
|
|
Dr. Jyoti Nangalia
|
MPN Molecular Biology
|
|
Dr. Tiziano Barbui
|
Managing ET in 2021
|
|
Dr. Richard Silver
|
Managing PV in 2021
|
|
Dr. Srdan Verstovsek
|
Managing MF in 2021
|
|
Dr. Ruben Mesa
|
Guidelines and Gaps in MPN
|
|
Faculty
|
General Q&A
|
|
Dr. Jeanne Palmer
|
Setting the Stage for Transplant
|
|
Dr. Krisstina Gowin
|
Complementary Treatments for MPNs
|
|
Dr. Susan Leclair
|
Learning about Labs, all about LDH,
SARS-cov2 and you
|
|
Dr. Susan Leclair
|
Thyroid Disorders
|
|
Dr. Jean-Jacques Kiladjian
|
The Future of Interferon in MPNs
|
|
Dr. Jason Gotlib
|
Evolving Targets for MPN Therapy
|
|
Dr. Angela Fleischman
|
Nutrition and MPNs
|
|
Dr. John Mascarenhas
|
New Drugs for MPNs
|
|
Camoriano, Leclair, Gotlib
|
ET Breakout – Q&A
|
|
Silver, Mascarenhas, Gowin
|
PV Breakout – Q&A
|
|
Mesa, Verstovsek, Deeg, Palmer
|
MF Breakout – Q&A
|
You can view the videos HERE.
The 12th Joyce Niblack Memorial Conference for MPN patients is being held as a virtual conference on 20 February this year.
Featuring many of the world’s leading MPN experts and researchers, it is a brilliant opportunity for MPN patients to stay up to date with the latest evidence and information on MPNs.
The conference is patient focussed and free to attend. All that is required is to register.
To view videos from the conference, see HERE.
2020’s virtual ASH conference hosted some fascinating and ground breaking findings on MPNs.
This information is all courtesy of MPN Hub.
Dr Jyoti Nangalia and a team of researchers from the Wellcome Sanger institute and Cambridge University in the UK will be presenting some fascinating findings at this years virtual American Society of Hematology (ASH) meeting.
Extensive genetic mapping by the team finds that MPNs “originate from driver mutation acquisition very early in life, even before birth, with life-long clonal expansion and evolution, establishing a new paradigm for blood cancer development. Early detection of mutant-JAK2 together with determination of clonal expansion rates could provide opportunities for early interventions aimed at minimising thrombotic risk and targeting the mutant clone in at risk individuals.”
Information about this presentation is available HERE courtesy of MPN Hub.
Dr Ann Mullally’s lab in the US has recently announced similarly fascinating findings. This research which further explores the cellular origins and development of mutations giving rise to JAK2 and MPNs, provides further evidence that mutations can develop decades prior to clinical presentation of MPNs, and can arise from a single hematopoietic stem cell.
More information on this important research is available HERE
A summary of the latest information on MPNs from the ASH 2019 (American Society of Haematology) meeting is available, courtesy of MPN Advocacy & Education International.
ASH 2019 summary videos on MPNs
