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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EHA 2019 Highlights: The CML patient advocates perspective

More than 12,000 hematology professionals from around the world met together in Amsterdam, The Netherlands for the 24th European Hematology Association (EHA) Congress. 

eha9This has been the largest EHA Congress ever recorded with a growth of more than a thousand attendees from last year.

Once again, our CML patient advocates team has been participating in this important meeting for leukemia patients as well as for the patient advocacy community.

Our co-founders Jan Geissler, Giora Sharf and Jana Pelouchova as well as our Chair Sarunas Narbutas and several Steering Committee members and CML CAB members as Zack Pemberton-Whiteley or Felice Bombaci, plus our staff members, have been attending and actively participating in many sessions of the Congress.

Know more about what happened at #EHA24 on CML:

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CML Advocates Network appoints Denis Costello as its first ever Executive Director.

 

d low2.jpg.001.jpeg.001We’re proud to announce that Denis Costello has recently been appointed as the first Executive Director of the CML Advocates Network, the global umbrella organisation dedicated to empowering patient leaders in Chronic Myeloid Leukemia (CML).

Denis comes to our CML family from EURORDIS, Rare Diseases Europe, where he worked since 2008 as the organisation’s Online Communications Manager.

During that time he has led the launch and operation of RareConnect, a global, multilingual social network for patients and families living with rare diseases (see www.rareconnect.org) which saw him work with over 1000 patient organisations of all sizes and from all over the world who now use the platform to host their online patient communities.

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European Society of Medical Oncology Congress, Barcelona, 2019

 

From 27th September to 1st October, the European Society for Medical Oncology Congress takes place in Barcelona. 

The ESMO Congress is the appointment in Europe for clinicians, researchers, patient advocates, journalists and the pharmaceutical industry from all over the world to get together, learn about the latest advances in oncology and translate science into better cancer patient care. 

Approximately 30.000 oncology professionals from all around the world will be able to do more for their patients.

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€ 20,000 donated to the CML Advocates Network during the EHA 2019 Congress!

wcmldlogoThe World CML Day

CML results from a transformation of a stem cell caused in about 95% of Chronic Myeloid Leukemia patients by the change of chromosomes 9 and 22, which is why World CML Day (9/22) carries a symbolic significance for the patient community. 

This day was initiated in 2008 by the patient community to bring awareness about patients’ needs to the general public, politicians and medical professionals across the world. 

To face this challenge, every 22 September the entire Chronic Myeloid Leukemia community stands together to raise awareness about one life-changing reality – living with CML.

The CML Advocates Network annually coordinates the World CML Day global awareness campaign to support our 122 members worldwide.

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RCE-ESO-ESMO training course for rare cancer patient advocates: Travel grants available

article nov

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

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Report from the first European Hematology Community Advisory Board (Hem-CAB) on 18 June 2018 in Stockholm, Sweden

hem cab1The 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.

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ASH 2017 in Atlanta, USA: CML patient advocates information

ashlogoJust two weeks left until the 59th ASH Annual Meeting and Exposition opens its doors on 9th December in Atlanta, USA. We are hoping to see many CML Advocates at #ASH17!

This is the world’s most comprehensive haematology event of the year and it is very important to be ready before the meeting as CML advocates in order not to miss out on any important session about chronic myeloid leukaemia.

We are happy to share with you 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 #ASH17.

Click on "Read more" and check what is offered for patient advocates, haematologists and other stakeholders interested in CML at American Society of Hematology Annual Meeting this year. If you are coming to #ASH17, don't miss any of them, they will all be really interesting!

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