ASH report on news about generic imatinib
When generic imatinib was introduced between 2013 and 2016 when the Glivec patent expired, generic formulations have been used recently as a more cost-effective treatment, but there are few studies that have prospectively evaluated the efficacy and safety of these drugs. By the time of introduction of generics, many patients and physicians were concerned about whether generic versions of the drug are as effective as the original, but no publications from the more strongly regulated markets have substantiated these concerns.
At this year's ASH congress, two publications addressed the topics of generic imatinib - one observational study from Brazil, Argentina and Italy on first-line treatment with branded and generic imatinib, and one observational study from Italy on switching from Glivec to generic imatinib.
ASH 2018 CML Education Session: With great success comes great responsibility
“June 2018 was the 20th anniversary of the clinical use of the first Tyrosine Kinase Inhibitor (TKI), Imatinib, in CML patients. Since then, the change in prognosis is one of the major success stories of modern cancer medicine”. Having this as an introduction of the CML section in this year’s education book of the ASH reminded me how far we’ve come in the past 20 years. Two decades have passed since first CML patients tested STI571, now called Imatinib, on initiative by CML experts Brian Druker and John Goldman against much resistance of established experts who thought this whole TKI approach is never going to work.
Today, as long as they can access current CML treatments, patients and doctors are no longer concerned with delaying the inevitable progression of the disease or the time towards bone marrow transplant, as it was in 2001. Today’s focus on the best choice of therapy based on the individual molecular biology of the disease, as well as individual comorbidities, side effects, quality of life. The main treatment goals are mainly to reduce disease burden quickly to prevent risk of early progression, and then achieve deep molecular remission and good quality of life. For about one fourth of patients, therapy-free remission after years of treatment is already an attainable goal.
“With great success comes great responsibility” was the motto of this year’s CML Education Session at ASH 2018 – reflecting that with all the choice we have, we must do our best to leverage all therapeutic options to give each patient the best care possible, to live up to the promise that any CML patient can live a normal, long and good life. The three speakers, Prof Jane Apperley from the Hammersmith Hospital in London, Prof Tim Hughes from Adelaide and Prof Charles Craddock from the University of Birmingham made this very practical by outlining therapeutic decision making on two hypothetical cases: 55 year old overweight, smoking Bob with additional chromosomal abnormalities, and 22 year old Sue who was pregnant. The three CML experts touched upon three important areas: choice of first-line treatment, molecular monitoring schedules, and advances in stem cell transplant for patients where TKIs have failed.
ASH 2018 Report (I): Treating CML during pregnancy
The 60th American Society of Haematology Annual Meeting and Exposition is taking place from 1-4 December in San Diego, USA.
The meeting is providing a huge educational experience and the opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in haematology with the attendance of more than 25,000 health-care professionals as well as many patient advocates.
We are pleased to share with you our first "ASH 2018 Report", contributed by our co-founder Jan Geissler.
Fellowships available to attend the DIA Europe 2019 Conference
DIA Europe 2019 is an annual conference organized by the global association DIA that connects life science professionals from many different areas with patients, peers and thought leaders.
From 5th to 7th February 2019, key thought leaders and healthcare innovators as the industry, academia, regulatory, government agencies, patient, and philanthropic organizations will come from across all disciplines involved in healthcare products and therapies. The meeting is intended to strengthen professionals’ understanding of the value of cross-discipline integration and to foster innovation for better health outcomes.
For more information, please visit the Dia Europe 2019 website.
Apply for a fellowship by Wednesday, the 5th of December 2018, 12:00 CET
This year's conference will take place at the Austria Center Vienna from the 5th to the 7th of February 2019.
DIA Europe 2019 is offering up to five Full Fellowships and up to fifteen Registration Fee waivers to include the patient representatives input in the conversation.
Be a part of the Patient Advocacy Program for the 13th Annual Patient, Family and Donor Day
The 45th EBMT (European Society for Blood and Marrow Transplantation) Congress will be held in Frankfurt, Germany during March 24th to 27th, 2019. The EBMT is happy to announce that they have added a new segment to the Congress and would like to introduce the new parallel session "Patient Advocacy Program" which will run as a part of the 13th Annual Patient, Family and Donor Day, taking place on Sunday, March 24th, 2019.
Be a part of the Patient Advocacy Program for the 13th Annual Patient, Family and Donor Day that is held at the annual EBMT Congress in Frankfurt, Germany.
Patient advocates are invited to participate in this remarkable and essential annual event of the: Patient, Family and Donor Day, that will now include a Patient Advocacy Track and it is free to attend.
There is also the opportunity to be able to have access to the full EBMT Congress (March 24th – 27th), by applying for a free registration. You will need to be quick to apply as there is a limited amount of 30 available for patient advocates.
RCE-ESO-ESMO training course for rare cancer patient advocates: Travel grants available
Are you are Patient Advocate for Rare Cancers? If so, you need to know about the Training Course from RCE-ESO-ESMO with travel grants available.
From 01-03 December 2018, the Rare Cancers Europe (RCE) initiative, in collaboration with the European School of Oncology (ESO) and the European Society for Medical Oncology (ESMO), is organising a specific training course for Rare Cancer Patient Advocates.
The 2018 edition of the event will bring together patient advocates from across Europe, to exchange views and ideas with clinicians and researchers, who are attending the parallel ESO-ESMO-RCE Preceptorships and Clinical Update on Rare Adult Solid Cancers.
Patient advocate travel grants available: Deadline 11th November
Report from the first European Hematology Community Advisory Board (Hem-CAB) on 18 June 2018 in Stockholm, Sweden
The European hematology patient community held its first hematology community advisory board (HEM-CAB) meeting in Stockholm on 18 June 2018. The hematology patient community is a very well-connected patient community in the area of rare diseases and oncology, with 12 pan-European patient umbrella organisations, including the CML Advocates Network, that have a network of over 250 member organisations that provide information for patients and carers, engage in EU and national policy and engage in research, development and regulatory affairs.
As an immediate follow-up action from the European Hematology Association (EHA) Congress, the first Hem-CAB meeting brought together leaders from the 12 pan-European umbrella patient organisations and representatives of eight pharmaceutical companies working in hematology. The CML Advocates Network was represented by Sarunas Narbutas and Jan Geissler.
The 8-hour Hem-CAB meeting was preceded by a 3-hour training session, preparing patient advocates about the structure and purposes of the meeting. While the meeting was held under confidentiality terms from all parties to allow for an open and frank discussion, key findings and action points are summarized in this report.
Welcome, Association Fanomezana LMC! Now 119 patient organisations from 89 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Association Fanomezana LMC, based in Madagascar. The CML Advocates Network now totals 119 member organisations in 89 countries worldwide! See the list of CML groups in the Network on our world map.
TFR 4 CML patients survey is closed!
The TFR for CML patients survey is now closed!
The CML Advocates Network launched the online global survey “TFR 4 CML Patients”, available in eleven languages (English, Spanish, German, Italian, French, Finnish, Hebrew, Arabic, Danish, Japanese and Russian) to measure the viewpoints, needs and experiences of CML patients that are considering or have already started Treatment Free Remission (TFR). From March to July 2018, the survey has collected the feedback of more than one thousand CML patients worldwide.
The findings of the survey will help us to better understand what the concerns, challenges and motivations are during the decision phase, the first probation phase after stopping, and when attempting TFR has either worked or failed.
Now, we start working on the analysis of the results of the treatment-free remission survey to provide the CML global community with a powerful evidence-based patient advocacy tool. Stay tuned for more information about #TFR4CML!
Webinar: Getting the most out of EHA 2018
The European Hematology Association's annual congress will start in Stockholm, Sweden, this week and we would like to support all CML patient advocates who will be attending with us this amazing meeting.
Our co-founder and member of the EHA European Affairs Committee, Jan Geissler, on behalf of the EuroBloodNET ePAG, presents this webinar on how to get the most of EHA as a CML patient advocate.
Through the webinar, you will be able to know more about topics like:
- Types of sessions at EHA and their relevance for a CML patient advocate
- How to set your priorities attending this huge congress.
- How to find and engage with key opinion leaders at the EHA Posters Sessions.
- More about EHA Abstracts: how to find them and how to read them.
You can also find a selection of clinical and translational research abstracts, oral presentations and posters focused on Chronic Myeloid Leukemia. Please, click on the following links to check out the interesting information for CML patient advocates attending #EHA23:
To know more about the relevant sessions and meetings for patient advocates at #EHA23, the Patient Advocacy Track, the Patient Advocacy Capacity Building Meeting, the Programme at a glance and many more, please visit our webpage EHA 2018 in Stockholm: Patient Advocacy Programme.
Don't forget to share the webinar with your contacts and see you soon in Stockholm, dear CML advocates!
World CML Day 2018
2018 World CML Day
"Today, Together.
Improving access."
“We see people dying of CML even though it's a well-understood, biologically well-understood, a well-treatable disease with five different therapies on the market. But if you can't access testing, if you can't access the drugs, people are still dying from the disease. And so access is a big issue. It's probably the biggest barrier that we have.”
- Jan Geissler. Co-founder of the CML Advocates Network –
Every year in 22nd September the CML global community lead by the CML patient Advocates holds the World CML Day. In 2017 more than 60 CML patient associations, members of the CML Advocates Network, support the awareness campaign “Today, together” and celebrate their courage and achievements! World CML Day 2017 Report
Know more about what we are planning for the World CML Day 2018 and be ready to be part of the worldwide awareness with "Today, together. Improving access."
EHA 2018 in Stockholm, Sweden: Patient Advocacy Programme
Just two weeks left until the European Hematology Association's annual congress starts in Stockholm, Sweden. Many patients of the hematology community and 17 CML patient advocates will be attending this impressive meeting from June 14-17, 2018 within more than 10.000 hematologists from all over the world.
Over the past months, the Hematology ePAG Project Management Office, coordinated by Nicole and Jan, has been working very closely with the EHA Congress office in order to make this year´s congress a success again.
Back by popular demand again this year, we have a joint patient advocates booth of all European patient advocacy organisations as well as “Patient Advocacy Track” session within the scientific program during the Congress. Up to 50 free congress registrations were offered to patient advocates (including 17 advocates interested in CML), so we hope there will be strong patient attendance!
Click "Read more" to see what has been offered specifically for patient advocates, haematologists and other stakeholders at #EHA23 this year.
