CML Advocates Network

The Leukemia Patient Advocates Foundation, the legal host of the CML Advocates Network, is proud to announce the launch of phase 2 of its International CML Adherence Survey. The survey will launch in 12 countries on International CML Awareness Day (22 Sept 2012). As it is organized by the non-profit patient community, this research work urgently needs your support now: If you are a CML patient treated with TKI, please participate. If you are a doctor treating CML patients: Please encourage your patients to participate!

Oncologists have been shocked by the growing body of evidence showing that many cancer patients are failing to take their drugs as prescribed, even when there is strong evidence to show they will benefit, and the side-effects are not considered serious. In a recent article of the magazine "CancerWorld", Giora Sharf, Estelle Lecointe and Stella Kyriakides try to explain why this may be happening. They urge oncologists to be more aware of their patients’ doubts and concerns about their medication, and to help them feel more comfortable about discussing their problems with adherence. Read the full article here.

Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia, also known as CML.  But, it's important. Adherence, or taking the medication as prescribed by the doctor, has a strong impact on the effectiveness of treatment.  "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a new video that educates patients with CML about the importance of adherence to treatment. Now also available in Italian language (and English)!

Patients, physicians and researchers all have a unique perspective on quality of life. However, does a patient perceive it the same way as their physician? With Quality of Life becoming more and more important when hematological diseases are turning into chronic diseases, this year’s “Patient Advocacy Session” at the European Hematology Association’s Annual Congress 2012 provided key insights into the patients and professionals’ perspectives on this important issue. The session, defined by the EHA Patient Working Group and chaired by Jan Geissler of the CML Advocates Network and Androulla Eleftheriou of the Thalassaemia International Federation, has become an integral part of EHA’s congress.

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While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult to understand by patients. To improve the information available to patients, an international CML workgroup of patient organisations and experts have developed a patient-friendly summary of recommendations for CML management. Thanks to a great community effort, the summary is now available in ten languages: English, French, Spanish, German, Italian, Macedonian, Polish, Serbian, Hungarian and Hebrew! The summary aims to help patients to better understand CML management and communicate with their doctors regarding treatment and diagnostics. The original recommendations for physicians were published by CML experts on behalf of the European LeukemiaNet (ELN) in the Journal of Clinical Oncology in 2009. Find the summaries in all languages here.

The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 66 organisations from 53 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 member "Thai CML Patients Group" from Thailand!

• See profile of Thai CML Patients Group
• See the list of CML groups in the Network, and our worldwide map