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27
May
CML patients call for quality & consistency when generics are introduced for treatment.

written by

Leukaemia Care, Charity

  • CML Horizons 2014

PRESS RELEASE (from CML Advocates Network)

On 2nd-4th May 2014, patient organisations from 58 countries supporting patients and families affected by chronic myeloid leukaemia (CML) met in Serbia to learn from medical experts, share best practice in patient advocacy and grow their organisation's capacity. An important topic of increasing attention discussed between patients and health professionals was the introduction of generics in CML treatment. Patients welcome that generics may improve patient access to more affordable therapies in many countries. However, patients also raise concerns about impact on their cancer when switched between different products for non-medical reasons, if these products’ equivalence in terms of quality and efficacy is uncertain.

With the imatinib patent expiring between 2013 and 2019, the introduction of generic versions is inevitable in many countries. Generics to treat CML have been introduced recently e.g. in Argentina, Bosnia-Herzegovina, Canada, Chile, China, Colombia, Costa Rica, Croatia, Cyprus, Dominican Republic, Guatemala, Ecuador, Egypt, Estonia, India, Kazakhstan, Lebanon, Latvia, Lithuania, Macedonia, Malta, Nepal, Philippines, Peru, Russia, Romania, Serbia, Slovenia, Slovakia, South Africa, Turkey and Uruguay.

Following intensive discussions at the global CML Advocates Network's global meeting of representatives of CML patient advocates on 2nd-4th, CML patient groups call to governments, health authorities and healthcare professionals to minimise potential uncertainties and risks for patients with the following five measures:

This declaration complements the “Baveno Declaration”, signed by more than 50 CML patient organisations in 2008 to call for best practice in CML care, improved access to cancer treatment, and better adherence to international treatment guidelines.

About CML

Chronic Myeloid Leukemia (CML) is a rare cancer affecting blood stem cells. It is a form of leukaemia characterized by the increased and unregulated growth of cells in the bone marrow and the accumulation of these cells in the blood. It is caused by a genetic rearrangement in chromosomes 9 and 22.

Current oral treatments have turned CML from a lethal into a chronic disease. Still in the early 1990s, only every fourth patient survived 10 years following the diagnosis with CML. The introduction of targeted therapies in 2001 have improved the 10-year survival to 84% today, if treated effectively. However, as demonstrated in clinical trials, maintaining a stable response requires continuous effective treatment. Suboptimal dosing, low adherence or cessation of treatment has shown to lead to recurrence and acceleration of the disease in most patients. Performing a bone marrow transplantation is still the only cure of CML, and the only feasible treatment of the disease in advanced phases.

About the CML Advocates Network

The CML Advocates Network is the global network for leaders of chronic myeloid leukaemia (CML) patient groups. It connects more than 80 patient organisations in more than 60 countries on all continents. Its aim is to grow capacity in patient advocacy organisations, to stimulate collaboration and best practice sharing, to provide educational resources, and to work with key stakeholders in the area of leuksemia care and patient advocacy.

To help patient advocates to understand the background on CML generics, it has launched a Resource & Knowledge Center, pulling together all information that is known to the patient community to date. See www.cmladvocates.net/generics

The CML Advocates Network was set up in 2005 and is run by CML patients and carers. It is hosted by the Leukemia Patient Advocates Foundation, a patient-led global non-profit organization registered in Switzerland.