Our publication in Journal of Cancer Research and Clinical Oncology: Factors influencing adherence in CML and ways to improvement
Non-Adherence to treatment in chronic diseases is a well-known problem. The dramatic evolution in CML treatment in the last decade, resulting from the introduction of Imatinib and followed by second generation TKIs, has turned CML into a kind of chronic disease where patients need to take their medication on daily basis.
In 2012, the CML Advocates Network decided to conduct a large, scientifically sound international study on adherence. It enrolled patients from 9/2012 to 1/2013 based on a comprehensive questionnaire in 12 languages. The aim of this study was to investigate motivations and behavioral patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2.546 questionnaires filled in by CML patients from 63 countries and 79 CML patient organisations were returned.
Our publication “Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries” has been a tough ride for us non-scientists over the past three years, given we needed support to do the data analysis and write a scientific paper.
Our paper has now been published in the Journal of Cancer Research and Clinical Oncology
At the annual ASH congress, the iCMLf, in collaboration with The Max Foundation, holds its annual "iCMLf Forum for Physicians from Emerging Regions". Presenters give the local emerging regions perspectives on each topic, followed by iCMLf experts from western countries and a discussion with the audience. The Forum was opened with a keynote from Dr. Brian Druker on meeting the new challenges in CML therapy. Then, Professor Tapan Saikia from India and Professor Andreas Hochhaus from Germany covered the challenges of CML frontline therapy. Afterwards Dr Anthony Oyekunle from Botswana and Dr Delphine Réa from France covered the issue of comorbidities when managing CML. The webstreams are now available.
Market exclusivity for imatinib has lapsed in 10 EU countries, most countries to follow in 2016. CML patients have been increasingly exposed to generics and copy drugs in the treatment of CML, raising concerns about outcomes when patients are switched between products for non-medical reasons.
A survey of patient organisations and physicians by the CML Advocates Network in 2013 determined that generic imatinib and dasatinib were available in 32 countries. In 2014, CML patient organizations released a declaration, calling for quality and consistency when TKI generics are prescribed, demanding data on bioequivalence and clinical equivalence to the originator drug. Patients should not be switched between products with the same substance for non-medical reasons. If a switch is enforced, it should not happen more than once a year, with sufficient follow-up assessing safety and efficacy. In case of loss of response or increase in toxicity after switching, switching to the previous treatment or another treatment should be allowed. More frequent molecular monitoring post-switch should allow early detection of differences in effectiveness or toxicity. These recommendations by the patient community may support experts' discussion on CML management with TKI generics.
Our paper has now been published in the journal LEUKEMIA, doi: 10.1038/leu.2016.220
European Reference Networks, a unique opportunity to take collaboration and patient care in hematology to the next level, was a core topic at EHA 2016
The 21st European Hematology Association’s Congress (EHA, 9-12 June 2016) was abuzz with networking between over 10.000 participants who travelled from all over the world to Copenhagen. The EHA Congress combined sessions and a diverse range of topics around Hematology highlighting state-of-the-art clinical practice, recent advances, new data and views from different stakeholders and international organizations. A hot topic this year were the European Reference Networks (ERNs). The CML Advocates Network is actively engaged in the upcoming ERN on rare hematological diseases.
Please sign the petition to reconsider India's government decision of levying customs duty on donated CML drug
Please sign this petition run by the Indian patient organisation "Friends of Max", calling on the Indian government to reconsider their government decision of raising significant import taxes on free Glivec donated to Indian CML patients through a patient assistance programme. For the past 13 years, Glivec was provided for free as a donation to CML patients, but now the Indian government may raise import taxes on a hypothetical financial value of the donated Glivec. This threatens the continuation of the free donation of the drug to thousands of CML patients in India. Please sign the petition at Change.com.
Free EHA congress registrations for representatives of hematology patient organizations: Deadline 3 May 2016!
This year's EHA Congress will be held 9-12 June 2016 in Copenhagen, DK. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program.
As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Copenhagen. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.
Deadline for free registrations is 3 May 2016! There will be no extension of the deadline and no late registrations. EHA, MDS Alliance and CML Advocates Network will do their best to allocate the 50 free registrations fairly amongst organisations and advocates. Please note that registrations are to be confirmed by the EHA office -- the MDS Alliance and CML Advocates Network just collect statements of interest on behalf of the patient community. We will let applicants know as soon as possible.
We are looking forward to the 14th CML Horizons conference, held in Ljubljana / Slovenia on 6-8 May 2016. 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.
Free EHA congress registrations for representatives of patient organizations: Deadline 24 March 2015!
This year's EHA Congress will be held 12-15 June 2015 in Vienna, Austria. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program. A team of leading patient advocates is currently working on the sessions for the EHA Patient Advocacy track and making a great effort to cover topics of priority for patients across diseases that are – at the same time - attractive to hematologists.
As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Vienna. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.
Deadline for free registrations is 24 March 2015! Please also note that the free registration are subject to confirmation by the EHA office - the CML Advocates Network just collects statements of interest on behalf of the patient community.
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.
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.
On World CML Day 9/22, leukemia patients worldwide unite to address the courage and hope required to live with chronic myeloid leukemia, and call for access to best available treatment and care for all patients
|In this second report from the annual meeting of the American Society of Hematology (ASH), we would like to cover some of the long-term follow-up data on first-line CML therapies: the 5-year update on the Nilotinib first-line trial ENESTnd, as well as the 4-year update on the Dasatinib first-line trial DASISION. The results of all three approved first-line TKIs Imatinib, Nilotinib and Dasatinib continue to be excellent when applied in first line, with low rates of progression, increasing rates of deep molecular responses. For those with resistance and intolerance against these three TKIs, at least two additional TKIs are becoming available in an increasing number of countries. CML has turned from a life-threatening disease into a chronic condition for most patients with a near-normal life expectancy. Given research conferences mostly cover unresolved topics, this year's CML sessions at ASH seemed to focus on mainly three topics: how safe and successful is stopping all therapy in deep molecular response, how do we manage serious side effects in some patients, and what role do pre-existing other diseases (e.g. cardiovascular risks that are more frequently present in elderly patients) play when we choose TKI therapy? This (lay) report focuses on ASH presentations that focused on these topics.||