The CML Advocates Network welcomes two new members: now 91 patient organisations from of 69 countries in the CML Advocates Network
We are delighted to welcome two new members to our network: "Maxvida" from Chile and "Osmijeh Tuzla" from Bosnia and Herzegovina. "Maxvida" is the first Chilean member of the CML Advocates Network. With "Osmijeh Tuzla", there are now two member organizations based in Bosnia and Herzegovina. From today, the Network connects 91 organisations from 69 countries across all continents. See the list of CML groups in the Network on our world map.
ASH 2014 Interviews on newest CML data, adherence and advocacy
At the ASH Meeting in San Francisco, PatientPower, Brandcast Media, The National CML Society USA and the American Journal of Managed Care conducted interviews with Dr. Michael Mauro, Giora Sharf, Greg Stephens and Jan Geissler.
See the the ASH 2014 interviews covering issues around newest CML trial data and quality of life issues, accessing CML treatment, patient advocacy, treatment adherence in CML, the book "Faces of Courage and Hope".
Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages
The CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.
It is now available in 15 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
Register now for CML Horizons 2015, 1-3 May 2015, Barcelona, Spain!
We are looking forward to the 13th CML Horizons conference, held in Barcelona / Spain on 1-3 May 2015. The CML Horizons 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. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.
Registration is now open for leaders of CML patient organisations.
ASH 2014 Report #2: New data on Ponatinib – most potent, but overdosed?
[Translations: German]
Ponatinib, the first 3rd generation Tyrosine Kinase Inhibitor and potentially one of the most potent CML drugs on the market, has gone through a roller coaster ride over the past two years.
The patient community has been following the development of ponatinib since it the first data of a phase I study with the so-called AP24534, today called ponatinib/Iclusig, was presented at ASH 2009. Given it is the only drug effective against T315I and some other multi-resistant mutations, and seems to work very effectively in many patients even after failure of imatinib, dasatinib and nilotinib, the drug has deserved a lot of attention. Based on a rough regulatory ride due to new concerns on the side effect profile, the CML community was now curious to hear the new data on ponatinib presented at ASH 2014. Of special interest were updates on side effects and risk factors, and whether those trial participants who had to reduce their ponatinib doses were still responding well to the drug, but with better tolerability.
A review of 2014 in the CML Advocates Network...
A busy year is coming to its end, and it´s a good time to reflect on our achievements and activities of the past twelve months. To name just a few:- An exciting and enriching "CML Horizons" Conference in Belgrade in May 2014.
- World CML Day on 22 September 2014 that demonstrated the unity of the global community with more than 30 worldwide activities.
- Publication of the International CML Book "Faces of Courage and Hope", published just in time for World CML Day 2014.
- Our inofficial Clinical Trial Registry that has significantly expanded over the past year. Currently the database lists 19 ongoing CML trials.
- Our CML Generics Declaration that a group of CML patient advocates agreed on in May 2014, complemented by a "knowledge base" on CML generics.
- Launch of a number of new educational videos for patients, aimed to highlight the subjects of "adherence", "side effects" and "testing and monitoring".
- Publication of a patient-friendly summary of the European LeukemiaNet recommendations (2013) for the management of Chronic Myeloid Leukemia.
- Publication of a summary of the patient advocacy sessions at the EHA congres in June 2014.
- Publication of two first reports of the ASH meeting in December 2014.
ASH-Report #1: Stopping CML treatment for therapy-free remission
[Translations: German - Russian]
Treatment-free remission, or stopping treatment in stable long-term deep molecular remission, has probably been the most reported topic at this year’s ASH.
The European Stop Tyrosine Kinase Inhibitor study (EURO-SKI), being the largest ongoing STOP study, has just completed recruitment of 700 participants. An interim analysis of the first 200 patients from 8 European countries with a follow-up of minimum 12 months was now presented. The study aims to define prognostic markers to increase the rate of patients in durable deep molecular response after stopping TKI treatment, evaluation of molecular monitoring procedures, and the assessment of quality of life.
ASH 2014 in San Francisco: Optimizing CML therapy
[
Translations: Russian - German]
The annual ASH meeting is the most important event of the year for researchers in the field of hematology. With more than 30.000 health professionals attending the congress, it serves as the leading platform to present and discuss the latest research results as well as to meet up and discuss collaborative efforts. Some might also call it collective sleep deprivation, with meetings usually starting before sunrise and ending with PowerPoint-supported evening receptions.
Other than at the EHA congress, the ASH meeting unfortunately does not feature a patient advocacy track in the scientific programme – or at least free admission for patient advocates, which results in patient advocates only making up around 0,1% of the total audience. Roughly 35 patient advocates from all continents and across disease areas attended this 56th ASH congress in San Francisco. Amongst them, Giora Sharf and Jan Geissler are reporting some of the latest news on CML presented in presentations and on posters.
Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages
The CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.
It is now available in 16 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
Patient-friendly summary of the ELN CML Treatment Recommendations now available in 12 languages
The CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.
Thanks to our member Borislav Mihaylov from Bulgaria, it is now also available in Bulgarian as the 12th language (English, Arabic, Bulgarian, Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian and Spanish).
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
The CML Advocates Network's Clinical Trial Registry now lists six new studies
About a year ago, the CML Advocates Network set up an inofficial clinical trial registry to give CML patients easy access to information on ongoing CML trials: http://www.cmladvocates.net/cmltrials. With the continued input from patients, academic institutions and pharmaceutical companies, who keep submitting up-to-date trial information, the registry has grown and turned into a great source of information. The trial registry contains not only a short summary of the trial, but also (if available) the informed consent documents for patients, a list of the study centers, as well as weblinks to clinicaltrials.gov or the EU Clinical Trials Register. Since the beginning of September 2014 alone, six new studies have been added, and 20 clinical trials are listed in total.
EHA 2014: Generics in haematology, young people in old people’s diseases, access to medicines, fair pricing: Key concerns of patients and clinicians tackled in the EHA Advocacy Track 2014
A stiffer regulatory environment for clinical research, heavy cost pressure on healthcare systems, as well as the advent of the Internet are changing the dynamics between healthcare providers, patients, policy makers and their healthcare system. Complementing the scientific programme of the European Hematology Association (EHA) Congress 2014, EHA has put patients at the centre by again offering a full-day Advocacy Track. It tackled sensitive issues like generics in haematology, young patients with old people’s diseases, as well as access to medicines and fair pricing. The sessions on 13 June 2014, supported by the CML Advocates Network and Thalassaemia International Foundation, were very popular not only for hematologists, but also nurses, researchers and patient advocates attended the various sessions.
