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CML: A tiger in the cage?
A (European) perspective on
CML disease management
Jan Geissler, CML Advocates Network
Within 20 years, treatment evolution changed CML
from end of life care to a chronic cancer
Today
with current TKIs
1994
or untreated
German CML Study Group, update 2013
Survival
probability
Year after diagnosis
n = 3682
Imatinib, 2002 – 2012 (CML IV)
5-year survival 90%
10-year survival 84%
IFN or SCT, 1997 – 2003
(CML IIIA) 10-year survival 61%
IFN or SCT, 1995 – 2001 (CML III)
10-year survival 48%
IFN, ± HU, 1986 – 1994
10-year survival 27%
Hydroxyurea, 1983 – 1994, 10 yr surv. 18%
Busulfan, 1983 – 1994, 10-year survival 11%
(CML I, II)
2000
Imatinib
Nilotinib
Dasatinib
Bosutinib
Ponatinib
+Interferon
Asciminib
Transplant
Cure
Within 20 years, treatment evolution changed CML
from end of life care to a chronic cancer…
…but it’s still a tiger that kills if it escapes
(CML advanced, resistant, badly treated or untreated)
Patient perspective on CML 2021
• With access to current TKIs and good management,
most patients can live a long life, even though not
completely normal
• Still a chronic cancer, with all its psychological, social and
medical challenges
• Some patients have significant side effects
• Treatment for decades is unsustainable for many patients
and for healthcare systems
• Unfortunately, too many patients still die from CML
today. Either because they don’t have access to drugs
or PCR, or because they progress on resistance, or
because of insufficient management of disease
• We (still) need a cure.
• In the most wealthy countries, for ~45% of patients
stopping treatment in remission (TFR) is an attainable
goal. For 55%, it’s not.
30%
No stable MR4
35%
1st stop
successful
(50% of all
patients
stopping in
MR4)*
10.5%
(~35% TFR
rate in 2nd
stop)**
24.5%
TFR failure
after 1st
and 2nd stop*/**
* TFR failure rates vary from 45% to 65% in various STOP studies, e.g. STIM, EUROSKI, DASFREE, ENESTop, ENESTFreedom.
** RE-STIM.1
CML, chronic myeloid leukaemia; MR, molecular response; PCR, polymerase chain reaction; TFR, treatment-free remission;
TKI, tyrosine kinase inhibitor.
Therapy-free failure and
success
T
F
R
The chance for getting rid of side effects and financial burden
vs. leaving the “safe harbour” trying therapy-free remission…
Key priorities in CML 2021
• Access to second/third/fourth-generation drugs
• Minimizing long-term toxicity in our chronic cancer,
especially cardiovascular toxicity on 2nd generation TKI
• Returning to good quality of life: multi-intolerance,
low grade side effects, family planning
• Managing multidrug resistance, progression and death
for some
• Tackling (un)intentional non-adherence to therapy
(disease and therapy fatigue)
• Achieving a real cure – upcoming drugs like Asciminib
won’t fix that
Strategic priorities of the global CML
Advocates Network in close collaboration
with The Max Foundation
http://www.cmladvocates.net
Global voice for CML
patients
Represent voice of CML patients
tailor activities to regions,
address national / local needs
Leader of cancer patient
community
Be a role model for other
disease areas / rare cancers
Realise synergies with other
cancer organizations, e.g.
health/research policy, WECAN
Partnerships with other
stakeholders in CML
research
Conduct CML Community
Advisory Board (CAB)
meetings with academia and
pharma companies
Work with CML experts
Build members’ capacity
/ capability
Support regional initiatives
Provide tools (e.g. ELN
Guidelines in 22 languages)
Build knowledge through
CML Horizons
Patient
advocate
Remember: It’s on all of us -
“Nothing about us without us!”
Jan Geissler
jan@cmladvocates.net
Nothing about us
without us!
Jan Geissler, CML Advocates Network

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CML: A tiger in the cage? A (European) perspective on CML disease management

  • 1. CML: A tiger in the cage? A (European) perspective on CML disease management Jan Geissler, CML Advocates Network
  • 2. Within 20 years, treatment evolution changed CML from end of life care to a chronic cancer Today with current TKIs 1994 or untreated German CML Study Group, update 2013 Survival probability Year after diagnosis n = 3682 Imatinib, 2002 – 2012 (CML IV) 5-year survival 90% 10-year survival 84% IFN or SCT, 1997 – 2003 (CML IIIA) 10-year survival 61% IFN or SCT, 1995 – 2001 (CML III) 10-year survival 48% IFN, ± HU, 1986 – 1994 10-year survival 27% Hydroxyurea, 1983 – 1994, 10 yr surv. 18% Busulfan, 1983 – 1994, 10-year survival 11% (CML I, II) 2000
  • 3. Imatinib Nilotinib Dasatinib Bosutinib Ponatinib +Interferon Asciminib Transplant Cure Within 20 years, treatment evolution changed CML from end of life care to a chronic cancer…
  • 4. …but it’s still a tiger that kills if it escapes (CML advanced, resistant, badly treated or untreated)
  • 5. Patient perspective on CML 2021 • With access to current TKIs and good management, most patients can live a long life, even though not completely normal • Still a chronic cancer, with all its psychological, social and medical challenges • Some patients have significant side effects • Treatment for decades is unsustainable for many patients and for healthcare systems • Unfortunately, too many patients still die from CML today. Either because they don’t have access to drugs or PCR, or because they progress on resistance, or because of insufficient management of disease • We (still) need a cure. • In the most wealthy countries, for ~45% of patients stopping treatment in remission (TFR) is an attainable goal. For 55%, it’s not. 30% No stable MR4 35% 1st stop successful (50% of all patients stopping in MR4)* 10.5% (~35% TFR rate in 2nd stop)** 24.5% TFR failure after 1st and 2nd stop*/** * TFR failure rates vary from 45% to 65% in various STOP studies, e.g. STIM, EUROSKI, DASFREE, ENESTop, ENESTFreedom. ** RE-STIM.1 CML, chronic myeloid leukaemia; MR, molecular response; PCR, polymerase chain reaction; TFR, treatment-free remission; TKI, tyrosine kinase inhibitor. Therapy-free failure and success
  • 6. T F R The chance for getting rid of side effects and financial burden vs. leaving the “safe harbour” trying therapy-free remission…
  • 7. Key priorities in CML 2021 • Access to second/third/fourth-generation drugs • Minimizing long-term toxicity in our chronic cancer, especially cardiovascular toxicity on 2nd generation TKI • Returning to good quality of life: multi-intolerance, low grade side effects, family planning • Managing multidrug resistance, progression and death for some • Tackling (un)intentional non-adherence to therapy (disease and therapy fatigue) • Achieving a real cure – upcoming drugs like Asciminib won’t fix that
  • 8. Strategic priorities of the global CML Advocates Network in close collaboration with The Max Foundation http://www.cmladvocates.net Global voice for CML patients Represent voice of CML patients tailor activities to regions, address national / local needs Leader of cancer patient community Be a role model for other disease areas / rare cancers Realise synergies with other cancer organizations, e.g. health/research policy, WECAN Partnerships with other stakeholders in CML research Conduct CML Community Advisory Board (CAB) meetings with academia and pharma companies Work with CML experts Build members’ capacity / capability Support regional initiatives Provide tools (e.g. ELN Guidelines in 22 languages) Build knowledge through CML Horizons
  • 9. Patient advocate Remember: It’s on all of us - “Nothing about us without us!” Jan Geissler jan@cmladvocates.net
  • 10. Nothing about us without us! Jan Geissler, CML Advocates Network

Editor's Notes

  1. Here you see our four strategic priorities: being the global voice of the CML patient community, being a thought leader across cancer patient advocacy, to work in partnership with all stakeholders, and to grow capacity in our members so they can be stronger advocates on the national level, in their own countries, and in their region.