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Cmladvocates Newly Diagnosed CML - Perspectives From The Patients - Jan Geissler Co-founder, CML Advocates Network

Being diagnosed with CML. Even though CML has become a chronic disease for the majority of patients today, it still puts patients

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Cmladvocates Newly Diagnosed CML - Perspectives From The Patients - Jan Geissler Co-founder, CML Advocates Network

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    1. http://www.cmladvocates.net Newly Diagnosed CML - Perspectives From The Patients - Jan Geissler Co-founder, CML Advocates Network Chair, Leukämie-Online e.V. Director, European Cancer Patient Coalition jan@cmladvocates.net

    2. Being diagnosed with CML Even though CML has become a chronic disease for the majority of patients today, it still puts patients & families on a rollercoaster ride CML outcome varies largely depending on: Stage at diagnosis (adv. phase still with poor outcome) Access to experienced doctors Effective treatment & monitoring Therapy adherence Coping with the disease

    3. Cancer patients need to take informed decisions Access to information is crucial Understand the disease Find a doctor with expertise on CML Find other patients Understand & consider trial participation Decide on therapy Know about interactions, CAM use, QoL, adherence Young patients: understand effects on fertility Lack of information leads to e.g. Lack of access to appropriate treatment, lack of trial participation, lack of compliance, interactions with complementary medicines, unnecessary suffering

    4. About the CML Advocates Network Founded in 2007 Main objectives Provide public directory of CML groups Facilitate communication of patient representatives Build advocacy knowledge Membership 47 CML patient groups from 41 countries on all continents Strongly interacting community

    5. Topics for today Trial participation? Living with CML The adherence challenge What CML patient groups can do with you

    6. Trial participation in CML? CML patients still in urgent need of progress in research Long-term collection of data in ongoing trials very important to patients Long-term effects of TKIs Relapse risks Trials on new treatments are also very important For advanced disease In case of intolerance or resistance To find a cure Unfortunately, research results are only published in English, creating barriers for both doctors & patients

    7. Challenges of CML trial participation Scrutiny about trials: Lack of information, complex "informed consent" Phase III/IV studies: More frequent diagnostics with impact on QoL. Some centres not "encouraging participation". Standard treatment already has high standard Delayed recruitment, delayed generation of meaningful clinical data, slower progress of research

    8. Living with CML ~1/3 of patients will eventually need a change of therapy Even in MMR, many patients do not feel being in the "safe haven": the emotional strain of waiting for results against the "PCR-itis“ Quality of life: psycho-oncology services often not offered Side effects are still a problem on all TKIs The lion is in the cage, but: adherence issues in a disease with little symptoms

    9. Lack of adherence: The shocking reality

    10. Some reasons for non-adherence Lack of education about consequences of non-adherence Some drivers: Avoiding side effects: deliberate drug holidays and mixed messages Laziness and lack of awareness "Chemo brain" and "poor packaging" Joint efforts of patient groups and doctors needed!

    11. CML patient advocacy groups have an important role with you Support & inform Help understand the disease, reduce fear Finding the right doctor Create patient information (therapy, trials) Advocate Best practice sharing in advocacy & support Advocate for access (e.g. UK, Poland, Lithuania) Enhance research Work with clinicians e.g. on patient information, informed consent and trial design

    12. Summary We greatly appreciate the excellent progress made in CML therapy – thanks to well-coordinated research We greatly appreciate initiatives like the CML has turned into a chronic disease, but we need a cure access to information – also for patient representatives – is still a key issue psycho-oncology and adherence are underestimated The worldwide "CML Advocates Network" with 47 groups can be a key partner in research, trial recruitment and patient information/care

    13. Thank you! Jan Geissler CML Advocates Network Leukämie-Online e.V. European Cancer Patient Coalition jan@cmladvocates.net

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