HRVATSKA UDRUGA LEUKEMIJA I LIMFOMI (HULL) DONOSI OBAVIJESTI O AKTIVNOSTIMA CML ADVOCATES NETWORKA - COMMUNITY ADVISORY BOARDA

Dana 12. listopada 2020. godine CML ADVOCATES NETWORK CAB održao je svoju 11. sjednicu, odnosno 1. ACADEMIC CML CAB, a sve relevantne obavijesti vezano uz novosti u liječenju kronične mijeloične leukemije, kao i video-materijale koji se na to odnose, možete pogledati u nastavku, odnosno ovdje.    

Dražen Vincek

"CML-CAB NEWS" – 2nd edition

November 2020
 

NOW AVAILABLE: EXECUTIVE SUMMARY OF OUR 1st EVER "ACADEMIC CML-CAB"

 
There is a clear need for innovation / further development in CML beyond Treatment Free Remission (TFR) as well as a need for a continued dialogue among all CML stakeholders including CML advocacy leaders, pharmaceutical partners, scientists, medical experts, etc. to address the key unmet needs of the global CML community and devise ways to address those needs.

As a first step in this direction, on 12 October 2020 we held our very first Academic CML-CAB on “Mechanisms to cure CML beyond TFR” to which we had invited 8 scientific experts, all of them working on novel areas of CML research. 16 CML-CAB members covering 223 patient years attended this meeting, the main objectives of which were to
•    Build a dialogue with academic researchers
•    Reach consensus on what the key issues are in CML (status quo)
•    Establish a vision of where we want to be and how a cure could look like (beyond TFR)
•    Look at different approaches to cure and learn which of these are most promising to cure CML
•    Identify what we as a community can contribute to achieve the vision of a cure for CML, and define a “roadmap to cure”

Our outstanding moderator Eric Low started the meeting with a strong opening statement: The CML patient community recognises that – while significant advances in the treatment of CML have been made – more needs to be done. The CML-community has set the achievement of a cure for CML as being their number one strategic priority. While the community recognizes that this will be a complex undertaking, participants were reminded that the success will depend upon achieving alignment of the CML community and system stakeholders. As NASA required a set of plans to put a man on the moon, we too need a plan to achieve a cure in CML. The CML community´s aim is to put this road map in place.

Each of the researchers presented their approach to cure as well as the enablers they see and barriers they are facing. CML-CABs aim was to understand what is needed and what we as a community can do to support promising approaches towards a real cure. Following the individual presentations, there was a 45 minutes discussion round that enabled the sharing of different perspectives and offered all participants the chance to ask questions.

CML-CAB chair Jan Geissler thanked the research community for their engagement and for not resting until we have made that important step towards a cure, stressing again that the patient community is very determined to move that way.

Click here to access the full executive summary of this highly interesting meeting.

A big THANK YOU to all participants for making this 1st Academic CML-CAB a success!
 
 

THE CONCEPT OF "CURE"

 
The CML-community has set the achievement of a cure for CML as being their number one strategic priority. But what is "cure"? How could a "cure" in CML look like? In preparation for the Academic CML-CAB, CML-CAB members have debated around this question in meetings and interactive workshops, trying to reach consensus on this question. The first results of this community consensus were presented at the Academic CML-CAB on 12 October. In an urgent appeal, the CML-community insisted that CML (which today has become a chronic disease for most patients thanks to 5 TKIs currently available) is often considered a “lucky cancer”, a “done deal”, or a “ticked box”. However, in many countries still today there are severe access issues (both to therapy and PCR). Also the side effects burden of a life-long therapy, the toxicity and non-adherence should not be underestimated. Furthermore, TKI-treatment is a real burden especially on younger patients (since it seriously hinders family planning) as well as a financial burden on healthcare systems due to increasing prevalence. TFR requires a stable deep molecular response which is only possible after many years of deep remission (every +1 year DMR -3% relapse rate). Furthermore, TFR success is only likely for at best 25-35% of patients, the reasons for this being: 1.) requirements to stop treatment aren´t met, 2.) no or limited access to PCR testing, and/or 3.) 50% relapse rate even with best TKI. Moreover, life-long PCR monitoring (if available at all) is a constant reminder of the disease. Will healthcare systems cover this after years of TFR? What about late relapses? While TFR does not eradicate disease, the stigma of cancer adheres to patients, treatment discontinuation causes fear, anxiety and depression, and there remains a risk of undetected (late) relapses that may lead to progression and death.

The CML- community therefore calls for
  • Recognition that cure is an unmet need in CML, not a done deal with TFR
  • Joint definition of the problem the community/CML-CAB trying to solve:
            – All CML patients (which is not given with TFR)
            – can live a normal, long life (which is usually given with TFR)
            – with equivalent quality of life of a normal person (there is uncertainty if
              this is given with TFR)
            – in absence of any CML disease (which is not given with TFR)
            – without need of any CML therapy (which is given with TFR)
            – without need of continuous monitoring (which is not given with TFR)
  • Commitment and collaboration between all stakeholders, first and foremost patient community and CML researchers to finding a real cure for CML
  • More funding for research on a cure for CML
  • Building a joint, patient-centric “Research Network for CML cure” that helps coordinate, drive and fund research in that space

Click here to access the full presentation.
 

INTRODUCTION TO CML-CAB

 

CML Community Advisory Board (CML-CAB) is a working group of the CML Advocates Network. It is a global panel of 18 leading patient advocates from all world regions (“CML-CAB members”) who all speak from the unique perspective of a CML patient or relative. CML-CAB members work together to address issues of strategic importance to the community and advocate for the best possible research and equal access to the most innovative treatment & care for CML patients around the world. CML-CAB monitors pharmaceutical developments and research in CML through active and targeted interaction, long-term cooperation and continued dialogue with pharmaceutical partners, regulators, medical experts, and the scientific CML-community.

Objectives

  • Providing researchers, academics, government, policy makers, authorities and the pharmaceutical industry with advice and input on different issues that impact on patients’ lives
  • Promoting best-in-class CML research as well as the harmonisation of good clinical practice, standard of care and access to best available CML therapies and diagnostic tools
  • Ensuring patient needs are considered when setting research priorities
  • Developing patient-friendly clinical trials and helping interested patients access these
  • Addressing problems CML patients face in accessing optimal diagnosis, monitoring, treatment and care
  • Improving the outcomes of CML patients
  • Improving the quality of patient information and education
  • Building CML advocacy community capacity

To learn more about CML-CAB, please visit the CML-CAB section on our website and watch our introductory CML-CAB video!

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