CML Horizons 2020 conference moves to November 2020
In light of the circumstances surrounding the global COVID-19 outbreak, the CML Advocates Network Steering Committee met via video-conference on March 19 to decide on the future of our annual CML Horizons conference which was due to take place in San José, Costa Rica from May 1-3.
Given the health risks posed to patients as well as the current travel restrictions for which there is no firm indication as to how long they may continue, the Steering Committee has decided to cancel the Costa-Rica CML Horizons conference and to re-schedule the event, circumstances permitting, in Europe in November 2020.
Even though it has been a difficult decision, the health of conference delegates remains our priority. We will continue to closely monitor the global situation and incorporate WHO recommendations on safety and travel into our sources of advice.
We will confirm the new dates, venue and further details about the conference in the coming days.
We would also like to express our sincere gratitude to all CML patient advocates, doctors, service providers and volunteers who have helped us with the organisation and program planning for Horizons 2020 Costa Rica.
Our commitment now is to work hard to reschedule and prepare an excellent CML Horizons conference for which we intend to exceed the expectations of conference attendees as they continue to learn, share and grow all together.
Stay tuned and follow our social media channels for more information!
Coronavirus disease and CML patients
The novel Coronavirus and the COVID-19 Disease
Information for Chronic Phase Chronic Myeloid Leukemia Patients
State of the Art as of 08 March 2020
Dr Michael Deininger (USA), Dr François Guilhot (France), Dr Jeroen Janssen (Netherlands), Dr Tim Hughes (Australia), Dr Jeffrey Lipton (Canada), Dr Franck Nicolini (France),
Dr Jerry Radich (USA), Dr Delphine Rea (France), Dr Giuseppe Saglio (Italy), Dr Suzanne Saussele (Germany), Dr Rick Silver (USA), Dr Juan Luis Steegmann (Spain).
Introduction
SARS-Cov 2 is a novel coronavirus that belongs to the large Coronaviruses (CoV) family. It emerged in December 2019 in Wuhan, China. This new virus is responsible for an illness called COVID-19 ranging from a simple cold to a more severe respiratory infection. The virus is spreading across the globe, representing a pandemic alert.
Transmission
Conventional routes of transmission of the new coronavirus consist of contact with respiratory droplets from infected persons. People may also possibly be infected when touching a surface or object that has the live virus on it then touching their mouth, eyes or nose although it may not be the main route of infection since in general, survivability of coronaviruses on surfaces is considered as poor. Finally, the new coronavirus can be detected in the gastrointestinal tract, saliva and urine, so these routes of potential transmission are currently under investigation.
CML Advocates Network statement on Coronavirus Disease 2019 (COVID-19)
The CML Advocates Network is closely monitoring the information concerning the Coronavirus Disease 2019 (COVID-19) worldwide.
At the present time, all our activities including the CML Horizons Conference 2020 continue as planned.
In the event that the situation changes, we will immediately inform our members and the wider CML community of the new circumstances through our website and communication channels. For updates, please follow us on Twitter, Facebook or LinkedIn.
We are committed to guarantee the safety of our participants with all possible measures and are currently seeking CML-specific medical advice from CML medical experts.
Please, make sure you follow the recommendations provided by the World Health Organization (WHO) and your local authorities.
For further information about the CML Horizons Conference 2020 or any other CML Advocates Network activity, please contact us at
Welcome, APPPEH, Panama! Now 123 patient organisations from 93 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Asociación Panameña de Pacientes y Parientes con Enfermedades Hematológicas APPPEH, based in Panama.
The CML Advocates Network now totals at 123 member organisations in 93 countries worldwide!
See the list of CML groups in the Network on our world map.
Summary of the CML educational session from ASH 2019
Patients, borders, money, and mission:
A global perspective of chronic myeloid leukemia
- Summary of the CML educational session from ASH 2019 -
Chairs:
Hemant Malhotra, MD, FRCP; Mahatma Gandhi Medical College Hospital, Jaipur, IndiaSpeakers:
Gary H. Lyman, MD, Fred Hutchinson Cancer Research Center, Seattle, WA
- Meeting the Needs of CML Patients in Resource-Poor Countries: a Roundtable Discussion
New drugs for CML in clinical trials: ASH 2019
Results from ASH: Discontinuation of TKIs in children with CML
TKIs seem to allow most CML patients, including children, to live a normal lifespan under continued treatment. However, the medication’s long-term side effects such as growth impairment and the need to take the drug for the rest of life, are an issue of concern, especially for children. Recent clinical trials in adults have suggested that some CML patients in deep molecular response on TKI therapy may have a chance to discontinue TKI treatment. However, the biology of CML in children may differ from adults with more aggressive presentation, and data of TKI discontinuation in CML children are limited.
Update on stopping CML treatment: Report from the American Society of Hematology Congress 2019
Achieving therapy-free remission (TFR) continues to be amongst the most discussed topics in CML at the moment. At this year’s ASH congress, the first plenary oral session on CML was dedicated to the topic of TFR and there were many posters as well.
Overall, there is no big news in the area of TFR, but research continues intensively. Across all the different studies, about half of all patients that are stopping therapy after years of deep molecular response to TKI (below MR4 / BCR-ABL below 0.01) need to restart treatment. The main open questions remain to predict the individual patients’ likelihood of a successful stop, the need for life-long PCR monitoring to catch potential late recurrences of CML, and whether a second attempt to withdraw therapy is feasible and safe.
The CML Clinical Trials data-base now lists 54 studies worldwide
Our clinical trials registry currently lists 54 studies:
- 32 CML studies actively recruiting patients, including
- 2 paediatric trials
- 7 treatment-free remission trials
- 20 studies that are no longer recruiting
Check here CML Trials Registry
ASH 2019 in Orlando, USA: CML patient advocates information
Just a few days left until the 61st ASH Annual Meeting and Exposition opens its doors on 7th until 10th December in Orlando, USA. We are hoping to see many CML Advocates at #ASH19!
This is the world’s most comprehensive hematology event of the year and it is very important to prepare the meeting as CML patient advocates in order not to miss out on any key session about chronic myeloid leukemia.
Below you can find some key information about CML sessions hoping it will assist you to prepare and outline your days and make the most out of your time whilst at #ASH19.
We are especially proud this year because of the strong presence of the patient advocacy evidence-based with two important posters of the leukemia patient advocacy community:
- The CML Advocates Network Paper “Chronic Myeloid Leukemia Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey”
- The Acute Leukemia Advocates Network Paper ”Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey”
Click on "Read more" and check what is offered for patient advocates, hematologists and other stakeholders interested in CML at the American Society of Hematology Annual Meeting this year.
TFR results and resources
ASH 2019 ABSTRACT
We are proud to announce that the 61st American Society of Hematology Congress 2019 has selected our abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey" published online in the November supplemental issue of the prestigious magazine Blood.
To read the full text of the Abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey", please click on the image below:
CML Horizons 2020 Registration Now Open
Register here - Preliminary Program - Conference fee - Scholarship Application
Call for Poster - Call for Nominations Travel - Visas - Venue & Accommodation - Acknowledgements
Registration is now open - Join us for the 18th “CML Horizons: Learn. Share. Grow" Conference
DATE: 1st to 3rd MAY 2020 - LOCATION: San José, Costa Rica
For the first time, the 18th CML Horizons will be held outside of Europe and will take us to Central America in beautiful Costa Rica.
