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

IMG 1721A 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.

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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

World CML Day 2014
Group by group, advocate by advocate, and survivor by survivor: on World CML Day on 22 September, the global patient community is raising awareness about the needs of people living with chronic myeloid leukemia (CML). Simultaneous events, publications and meetings on all continents put a spotlight on the real needs of patients and their relatives, and demonstrate the power and unity of a unique worldwide community that knows no borders. Their brand-new book “Faces of Courage and Hope” further provides an insight into the journeys of 16 CML patients in 15 countries.  
Members of the CML Advocates Network, which is today comprised of 90 patient advocacy groups in 68 countries, are honoring World CML Day on September 22nd 2014 through actionable events taking place in their communities. All events worldwide aim to underscore the importance of the needs of people living with CML. The needs of patients in different regions vary largely – from basic challenges of access to treatment and care, over uncertainty on the quality of treatments, to living with cancer as a chronic disease.

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ASH Report #2: First-line trial updates, STOP trials, early switching, comorbidities, side effects

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.   

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Video on Adherence in CML now available in English and Italian, plus versions with subtitles in German, Spanish, Hebrew, Dutch and Chinese

Taking medication exactly as prescribed is not always easy for many patients with chronic myeloid leukaemia. However, adherence, or taking the medication as prescribed by the doctor, is important, as it has a strong impact on the effectiveness of treatment.  "Chronic Myeloid Leukemia: What you need to know about adherence to therapy" is a video that educates patients with CML about the importance of adherence to treatment. The video was developed by a European workgroup of 8 patient advocacy groups and CML experts, supported with in-kind resources from Bristol-Myers Squibb.

It is now available in English and Italian, and now also in versions with German, Hebrew, Dutch, Spanish and Chinese subtitles.

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Poster on our CML Adherence study presented at ASH - available for download here!

The CML Advocates Network presents its new multivariate analysis on factors predicting intentional non-adherence at the ASH Congress in New Orleans 2013. The poster is now available for download here.

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