CML Advocates Network Newsletter: May 2015

 
 
   
 

Dear friend of the CML Advocates Network,

It´s again time for some updates on recent developments, projects and activities of our network.

  • Welcome to our new members - our network grows to 102 organizations in 78 countries!
  • CML Horizons 2015: Presentations available, webstreams & conference report coming soon
  • New CML Horizons Steering Committee 2016-2017 has been elected
  • The CML Advocates Network´s Clinical Trial Registry now lists 28 CML studies
  • First two animated patient videos available
  • ELN Summary now in 17 languages
  • Two must-reads: CancerWorld articles on "Side effects of target treatments" and "Generic cancer drugs"

Welcome to our new members - our network grows to 102 organizations in 78 countries!

2015-03-13 09 37 13-CML Patient OrganisationsSince its initiation in 2007, the CML Advocates Network has grown at an amazing pace. Recently, 2 new organizations have joined the network! These are:

We are proud to now count among our members 102 organizations in 78 countries worldwide! See the list of CML groups and our world map.

If your organization is not a member of the CML Advocates Network yet but wants to benefit from the advantages of being a member and fulfills the membership criteria, please submit your application!

CML Horizons 2015: presentations available, webstreams and conference report coming soon!

Group photo CMLHZ15-800From 1-3 May 2015, the CML Advocates Network welcomed 118 delegates (among them almost 30 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to its annual conference CML Horizons that this year was held in Barcelona (Spain). Delegates from 65 countries worldwide (Europe, North America, Asia, Africa, Middle East and Latin America) came to Barcelona to learn from medical experts, share best practice in patient advocacy and grow their organization´s capacity. Besides enlightening medical sessions and interesting panel discussions, for the first time an interactive poster session was held. Once again we leave with special memories of a wonderful conference.

PDFs of all presentations of the conference are now available for download on the CML Advocates Network website. View them here. Video streams of all presentations will become available in the next 2 weeks. The conference report will follow as soon as completed. Please be patient.

Thanks to all participants, speakers, sponsors and organizers for again making this an unforgettable experience!

New CML Horizons Steering Committee 2016-2017 has been elected

CMLHZ SC 2016-2017At this year´s CML Horizons conference a new CML Horizons Steering Committee was elected. The Steering Committee consists of one elected representative from each of the six major regions (1. Asia-Pacific, 2. North America, 3. Latin America, 4. Middle East & Africa, 5. Western Europe and 6. Central and Eastern Europe & West Asia) + three permanent members (founders of the CML Advocates Network). A total of 9 nominations was received. Each member organizations present at the conference had one vote per seat.

The members of the new CML Horizons Steering Committee are:

  • ROD PADUA from Philippines for the region ASIA-PACIFIC
  • GAIL SPERLING from USA for the region NORTH AMERICA
  • PAT GARCIA-GONZALEZ from USA for the region LATIN AMERICA
  • BAHIJA GOUIMI from Morocco for the region MIDDLE EAST & AFRICA
  • RITA O. CHRISTENSEN from Denmark for the region WESTERN EUROPE
  • JELENA CUGUROVIC from Serbia for the region CENTRAL AND EASTERN EUROPE & WEST ASIA

plus the three CML Advocates Network founders

  • JAN GEISSLER from Germany
  • GIORA SHARF from Israel
  • JANA PELOUCHOVA from Czech Republic

as permanent committee members.

We want to take the opportunity to express our gratitude to the retiring members of the CML Horizons Steering Committee:

  • MINA DABAN from France
  • ZHENGCHEN LIU from China

Thank you for your hard work and dedication over the past two years!

The CML Advocates Network's Clinical Trial Registry now lists 28 CML studies

The CML Clinical Trials registry is a valuable resource for patients advocates to understand which CML studies are currently recruiting. Four new studies have been entered since our last newsletter in March 2015, now listing 28 CML studies at http://www.cmladvocates.net/cmltrials. The recently included studies are:

  • EUREKA, the ELN registry for patients with CML in chronic phase (CP) who have been treated with tyrosine kinase inhibitors for at least two years;
  • CAMN107A2203, a study on the efficacy and safety of oral nilotinib in CML in children and adolescents
  • MSIT, the Malaysia Stop Tyrosine Kinase Inhibitor Trial [Malaysia]
  • SIMPLICITY (CA180-330), studying first line treatment of CML in a Real-world Setting [Europe, Caribbean, Russian Federation, USA]

Recruitment has been completed in two studies, meaning that no further patients will be included. These studies have been moved to the category "Trials that are no longer recruiting". The completed trials are:

  • ENESTPath, a study to assess the effect of a longer duration of consolidation treatment with nilotinib on TFR in CP CML [Europe]
  • CHOICES, a study on imatinib mesylate with or without hydroxychloroquine to eliminate malignant stem cells in patients with CML [Europe]

We are adding further studies as they become known to us. Thanks very all contributors of new studies or updated data.

Do you know of any study that is not yet listed in our Clinical Trial Database? Please let us know by filling out this form. Or is there an entry which should be corrected? If so, please send us an email. Please also visit our discussion forum if you have any questions or wish to share your experience on these studies!

First two animated patient videos available

In September 2014, the CML Advocates Network published the international CML Book "Faces of Courage and Hope" an English-language book that illustrates the life of 16 CML patients from 15 countries. The book features wonderful photos and moving interviews. Selected patient stories are now also available in form of animated videos! The animated stories bring to life the emotional impact of CML on patients and their friends and family, in addition to their future hopes and aspirations. The following videos are now available:

  • Living with CML: Bert´s story of courage and hope (English)
  • Living with CML: Mina´s story of courage and hope (English)

More videos will follow!

Patient-friendly summary of the ELN CML Treatment Recommendations now also in Danish – and 16 other languages!

ELN2013summary-coverThe CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML. The recommendations are based on a consensus of 32 CML experts from Europe, America and Asia-Pacific and on the best scientific data available at the time of publication. To help patients understand the ELN recommendations, in 2014 the CML Advocates Network has developed a document in lay language.

We are proud to announce that we have recently added a new version in Danish language. With this, the patient friendly summary is now available in 17 languages, including English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish, Turkish, Serbian and Danish.

See our ELN Summary here:
http://www.cmladvocates.net/cmlsummary

Two must-reads: CancerWorld articles on "Side effects of target treatments" and "Generic cancer drugs"

In its March-April 2015 edition, the magazine CancerWorld published two interesting articles that we strongly recommend to read.

The first article is entitled "Side effects of targeted treatments: clinicians' perceptions, patients' realities".

Summary: The side effects of targeted drugs are poorly documented, and their impact on patients frequently seriously underestimated and undertreated. The CML Advocates Network´s CML Adherence Study and the issue of side effects in CML treatment is covered in detail in this article. Also covered: Myeloma Patients Europe survey and the GIMEMA CML study on the different perceptions of doctors and patients on side effects.

See full article here!

The second article is entitled "Generic cancer drugs that we can trust".

Summary: Generics markets are gearing up for the expiry of patents on some of the first targeted cancer drugs. It´’s good news for greater access, but patients want reassurance that switching to generics won´’t put them at risk. The article sheds more light on this issue which is increasingly relevant in CML in so many countries, given imatinib will be off-patent everywhere latest by 2016. The CML Advocates Network​ has pioneered transparency on imatinib generics (see http://www.cmladvocates.net/generics) and this is covered in this CancerWorld article, quoting CML Advocates Network members in Lithuania and Serbia.

See full article here!


Best regards,
Jan Geissler, Giora Sharf and Nicole Schröter
Your CML Advocates Team
 

 

 
   
 

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