World CML Day 2020: Today, together, more than ever. For a life without CML

 

  

 

Every 22nd September, the CML Advocates Network leads the World CML Day global awareness campaign. On this day, chronic myeloid leukemia (CML) patients across the globe come together to raise awareness about our needs to the general public, politicians, and medical professionals across the world.

Today, together, more than ever due to the COVID-19 pandemic, the CML patient advocates need to connect as a worldwide community through digital tools by developing online activities.

Two months ahead of 22nd September, today we launch the World CML Day campaign, encouraging CML patients and patient organisations, health care providers, collaborators and all CML friends to join the global movement under a powerful motto:

 

"Today, together, more than ever. For a life without CML"

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EHA 2020 Congress: CML updates and tips to a virtual attendance

EHA25 VIRTUAL: 25th EHA Annual Congress: "Unfolding the future!”

 

Eha VirtualJust a week left until the European Hematology Association's annual congress starts as a virtual meeting this year! We hope many patients of the hematology community and specifically CML patient advocates, will be attending this impressive meeting from June 11-21, 2020 that is going to be held online due to the COVID-19 global pandemic.


Facing new challenges to bring an online platform to attendees, EHA2020 is offering this year a program with new types of sessions and schedulings through "On-demand" and "Live sessions" such as plenary presentations, award lectures, the presidential symposium and Satellite Symposia and Updates-in-Hematology organized by pharmaceutical companies.

Read more to see what has been offered specifically for patient advocates, hematologists and other stakeholders at #EHA25Virtual this year:

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Results of the TFR for CML patients' study published in Leukemia

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Bern, Switzerland, 28th May 2020.

 

“The psychological well-being of CML patients should be a consideration of healthcare professionals and addressed at all stages of the treatment-free remission journey”

  

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  • CML Advocates Network, the global network connecting 125 CML patient organisations in 93 countries, has published a paper in the prestigious journal Leukemia, considered one of the leading journals in hematology and oncology.
  • The study, the main author of which is Giora Sharf, himself a CML patient, has identified chronic myeloid leukemia (CML) patients’ unmet needs during the treatment-free remission (TFR) journey.

The results of the study published on the paper “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs" indicate that there are points in the TFR journey where patients do not always get all the advice, information or support they want around psychological issues and tyrosine kinase inhibitors (TKIs) withdrawal.

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CML and COVID-19: New Website section on cmladvocates.net

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The CML Advocates Network is closely monitoring the current COVID-19 outbreak worldwide. 

We are happy to announce the launch of a new website section to better inform the CML patient advocacy community on what is happening around Chronic Myeloid Leukemia and COVID-19 globally.

In this section, we will regularly publish breaking news, scientific information and other support resources which may be of interest.

Advance your knowledge on the CML and COVID-19 global situation with access to the following topics:

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CML Horizons 2020 conference moves to November 2020

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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. 

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CML Advocates Network statement on Coronavirus Disease 2019 (COVID-19)

who 1The 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 info@cmladvocates.net

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, India
Speakers:
  • The US Experience with Generic Imatinib in CML: Did Cost Predictions Meet Reality?

post ash 1Gary H. Lyman, MD, Fred Hutchinson Cancer Research Center, Seattle, WA

  • Meeting the Needs of CML Patients in Resource-Poor Countries: a Roundtable Discussion
Jerald P. Radich, MD, Fred Hutchinson Cancer Research Center
Hemant Malhotra, MD, FRCP
Mahatma Gandhi Medical College Hospital, Jaipur, India
Pat Garcia-Gonzalez, The Max Foundation, Seattle, WA
 

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New drugs for CML in clinical trials: ASH 2019

This summary will cover a few of the important topics regarding CML that were presented at ASH 2019 including:

  1. New Drugs for CML
  2. Update on the French and German Interferon combination studies
  3. Age-adjusted treatment in CML- Elderly and Pregnancy report for young CML patients. (our report regarding pediatric CML was published separately).
  4. Generic Imatinib 

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Results from ASH: Discontinuation of TKIs in children with CML

pediatric report1 defTKIs 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.

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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. 

ash higherOverall, 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.

 

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ASH 2019 in Orlando, USA: CML patient advocates information

logo bannerJust 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:

  1. The CML Advocates Network Paper “Chronic Myeloid Leukemia Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey”
  2. 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.

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