CML Advocates Network

The Survey on the Worldwide CML Advocates Network regarding Complementary and Alternative Medicine (CAM) which was conducted in collaboration with the CML Advocates Network was published in the March edition of the "Journal of Cancer Research and Clinical Oncology" (see Pubmed). 53 leaders of CML patients advocacy groups from 35 countries responded to the survey. Thank you all for your valuable contribution!

A poster of the survey is now available for download, and click on "Read more" to read the abstract.

Optimal adherence to CML therapy is of key importance to maximise treatment effectiveness. Non-adherence as well as its biological effect on CML has been observed in clinical research, but data on potential driving factors of non-adherence are lacking in the scientific literature. A European workgroup of the CML Advocates Network, a network of leukemia patient groups in now 60 countries, has conducted a large international study enrolling patients from 9/2012 to 1/2013 in 12 languages. The aim of this study is to investigate motivations and behavioural patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2546 questionnaires filled in by CML patients from 79 countries were returned. We are thrilled and thank all our members for their invaluable efforts to contribute to this survey by recruiting respondents!

This is the most comprehensive study conducted to date to gain knowledge about motivations behind non-adherence in CML. It has been accepted to be presented at the European Hematology Association's Annual Congress on 16 June as an oral presentation in the scientific programme. Click on "Read more" to read the abstract.

The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 76 organisations from 60 countries across all continents. This worldwide network offers support by sharing of best practice, information and advice for CML patient representatives. We are delighted to welcome our newest members

• Azerbaijan: Charter Of "Fighting Leukemia" Public Union
• Peru: ESPERANTRA
• Germany: Parents' Organisation for Children with CML (Elternverein für Kinder mit CML e.V.)
• Hong Kong: Adult Blood Cancer Group
• Sudan: Charity Organization for patients with CML

See the list of CML groups in the Network, and our worldwide map.

The following video interviews done by our partner Andrew Schorr of PatientPower have just been published and are available as webstreams:

• A CML Advocate's Perspective on News from ASH 2012: Interview with Greg Stephens, National CML Society
• The latest in CML: a Global Patient Advocate's Perspective with Jan Geissler, CML Advocates Network
• An Expert’s Perspective on Changing CML Treatment Options: Dr. Moshe Talpaz discusses whether or not the "big guns"of treatment should be used up front or saved as a later option
• Ponatinib Study Brings Positive Results For the Most Resistant Types of CML, Dr. Jorge Cortes

 See the video interviews here

Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia. However, adherence, or taking the medication as prescribed by the doctor, is important, as it has a strong impact on the effectiveness of treatment.  "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a video that educates patients with CML about the importance of adherence to treatment. The video was developed by a European workgroup of 8 patient advocacy groups and CML experts, supported with in-kind resources from Bristol-Myers Squibb.

It is now available in English and Italian, and now also in versions with German, Hebrew, Dutch, Spanish and Chinese subtitles.

We are looking forward to our 2nd CML Horizons conference held at the Hilton Prague Old Town, Prague, on 3-5 May 2013. The CML Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community and provides a unique opportunity for participants to share experiences and best practice. The conference will again feature a good mix of medical sessions with world-renowned CML experts like Tim Hughes from Australia, Gianantonio Rosti from Italy, Dina Ben Yehuda from Israel, Katerina Machova from the Czech Republic and Fabio Efficace from Italy, as well as sessions with advocacy topics e.g. on substandard drugs and generics, e-advocacy and social media, advocating to policy makers or how to run patient meetings.

Leaders of leukemia patient advocacy organisations are eligible to participate in this conference. More information can be found at http://www.cmladvocates.net/cmlhorizons2013