Patient groups and health professionals call for joint action to improve patients access to diagnosis, treatment and care on International CML Awareness Day
22 September 2011 is a very special date for patients affected by Chronic Myeloid Leukemia (CML), a rare blood cancer that has played a key role in the path towards personalized medicine in cancer. For the first time, patient advocacy groups from all continents will celebrate "International CML Awareness Day" on that date. Patient organisations of the CML Advocates Network from 49 countries, supported by The Max Foundation, Alianza Latina and the International CML Foundation, call on caregivers, healthcare professionals, government and industry to work together to improve on timely access to diagnosis, treatment and care.
The date (9/22), which symbolises the genetic change of chromosomes 9 and 22 which causes Chronic Myeloid Leukemia (CML), will see activities around the world, ranging from meetings of key experts and politicians, release of awareness videos, press conferences, fundraising and awareness events, all of which will raise awareness of this rare blood cancer. Incidence and prevalence of Chronic Myeloid Leukemia are increasing.
"Everyone working to support patients around the world is extremely excited about International CML Awareness Day and all of the great work which is being undertaken to support patients worldwide," says Giora Sharf who is a CML patient for 11 years and co-founder of the CML Advocates Network. "There are many leukemia patient organisations around the world which do fantastic work to support survivors. For all of us to campaign with a 'united voice' today is a real achievement and big advance. It is a significant call to action to positively impact the well-being of people living with CML around the world", adds Pat Garcia-Gonzalez, Executive Director of The Max Foundation.
Chronic Myeloid Leukemia as a model for personalized medicine
Well-coordinated molecular research and close collaboration between clinicians, patients and industry has changed the face of CML in the past 10 years. "Just 15 years ago, CML was a deadly disease for the majority of patients. With the advent of targeted therapies, CML has become a manageable chronic disease today", says Prof. Timothy Hughes, Board Member of the International CML Foundation and one of the pioneers in running trials with targeted CML treatments in the early 2000s. "When CML is detected early and treated well, patients can expect to live a long life with good quality. CML has become a model of personalized medicine for many cancers", he adds.
However, much more needs to be done. About 20% of all patients do not respond or suffer from strong side effects. In addition, a cure has yet to be found, as the disease usually relapses quickly after cessation of therapy. To resolve this, new innovative studies targeting residual cancer stem cells are underway. Many innovative approaches will be discussed on September 22 when about 400 haematologists meet in Portugal, to review the newest curative approaches at the conference " CML - Biology and Therapy" organised by the International CML Foundation and the European School of Hematology.
International CML Awareness Day demonstrates close collaboration of patients, physicians and policymakers
The proclamation to declare "International CML Awareness Day" has already received widespread support with over 1,300 signatures from over 50 countries. At an international level, the CML community calls upon all those who are responsible for the well-being of CML patients to speak with a united voice, adhere to and build upon the basic standards laid out in treatment guidelines published by CML experts and work together to improve access to diagnosis, treatment and care.
Commenting on the patients' initiatives on International CML Awareness Day, Prof. John M Goldman, chairman of the Board of the International CML Foundation, said: "It is so important for CML patients that groups are available to offer advice and support throughout the patient journey. The International CML Foundation welcomes the launch of the first ever International CML Awareness Day and calls on all members of the worldwide CML community to sign the proclamation."
Patient-driven initiatives celebrate International CML Awareness Day
On 9/22, many patient organisations implement impressive activities around the world, ranging from releasing awareness videos, holding press conferences, fundraising and awareness events and meetings with key experts and politicians. Needs of CML patients across the world differ largely, depending on national healthcare systems, access to diagnostic methods and therapies, and availability of information for patients and caregivers.
In order to show the different faces and perspectives of CML across the world, more than 100 patients and physicians have already submitted their unique photos and stories as "Faces of CML" on cmladvocates.net. This includes a photograph of a Canadian CML patient who has been living with CML for 34 years, possibly the longest living CML survivor world-wide.
To improve the information available to patients, an international CML workgroup of patient organisations and experts are launching a patient-friendly summary of recommendations for CML management published by the European LeukemiaNet (ELN) in the Journal of Clinical Oncology in 2009. While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult for patients to understand. The summary, launched on September 22 in 6 languages, aims to help patients to better understand CML management and communicate with their doctors regarding treatment and diagnostics.
~ Ends ~
Notes to editors: Useful links to further information
- List of national awareness activities, coinciding with International CML Awareness Day: http://www.cmladvocates.net/awarenessevents
- Proclamation for International CML Awareness Day: http://www.cmladvocates.net/cmlawarenessday
- Faces of CML photos: http://www.cmladvocates.net/facesofcml
- New patient-friendly ELN summary: http://www.cmladvocates.net/cmlsummary
- Download of images, photos, logos for CML Awareness Day: http://www.cmladvocates.net/cmlday-media
What is CML?
Chronic Myeloid Leukemia (CML) is a disease of the blood and bone marrow that results when there is a cancerous transformation of a stem cell. Stem cells are like seeds in the bone marrow that mature into any of the three major blood cells: white blood cells, red blood cells and platelets. CML stem cells are abnormal and result mainly in the overproduction of white blood cells that enter the bloodstream and circulate throughout the body. CML that is not being treated leads to a terminal disease within 2-3 years.
Most CML cells have a reciprocal translocation, a part of chromosome 22 that is exchanged with a part of chromosome 9, leading to the formation of the so-called Philadelphia chromosome that was discovered in 1960. The fusion of these genes produces an abnormal protein with increased tyrosine-kinase activity that is thought to be the cause of CML. Understanding these mechanisms led to the development of a genetically targeted cancer drug, considered one of the top breakthroughs in personalized medicine in cancer.
About the CML Advocates Network
The CML Advocates Network is both a virtual network and internet platform for patient organisations supporting patients and relatives affected by Chronic Myeloid Leukemia (CML). Launched in 2007 with four founding member groups, it has now grown to a network of 61 leukaemia patient groups in 49 countries, offering support by sharing of best practice, information and advice for CML patient leaders. http://www.cmladvocates.net
About the International CML Foundation (iCMLf)
The iCMLf is a charitable foundation established in 2009 by a group of haematologists with a strong interest in CML. The mission of the iCMLf is to improve the outcomes for patients with CML globally. It aims to foster and coordinate global clinical and research collaborations and to improve clinical practice and disease monitoring in CML. Scientific advisors and national representatives spanning over 30 countries provide guidance and advice to further the aims of the iCMLf.
Any request or suggestion on this initiative is very welcome!
CML Advocates Network
International CML Foundation