Very engaged patient advocacy activities at the European Hematology Association’s Annual Congress 2017 in Madrid

EHA MadridThe European Hematology Association’s (EHA) Annual Congress was held in Madrid, Spain on 22-25 June 2017. More than 10.000 hematology professionals from around the world gathered and discussed the latest developments in hematology research and clinical practice. For the last 7 years, EHA together with its EHA Patient Organisations Workgroup, have conducted Patient Advocacy Sessions within the Scientific Programme of the EHA Congress. With its Patient Advocacy Track, EHA Fellowship Programme, Capacity Building Programme for Patient Advocates, the EHA is one of the leading medical societies in terms of patient involvement in its congress. 

EHA presentations available in this article.

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This year the European Patient Advocacy Group (ePAGs), consisting of the leaders of seven international patient advocacy groups including our CML Advocates Network co-founder Jan Geissler, organized a full EHA Patient Advocacy Capacity Building Meeting together with EHA and the European Reference Network EuroBloodNet (coordinated by Prof. Pierre Fenaux, Hôpital Saint-Louis University, Paris) at the start of the EHA annual congress. This meeting featured presentations about EuroBloodNet (presented by Prof. Pierre Fenaux), a training about “Getting the most out of EHA as a Patient Advocate” (by Jan Geissler), and an educative presentation on interpreting scientific data (by patient activist Tamas Bereczky).

eha6This was strengthened with parallel session of the six disease-specific sessions to prepare advocates for the scientific sessions in MDS, CML, Multiple Myeloma, CLL/Lymphoma, Acute Leukemias and MPN at the congress. An overview of “CML: What’s new at EHA” was provided by Prof. Tim Brümmendorf from the University Clinic of Aachen, Germany. Feedback from patient advocates was that the sessions served as very helpful tool for them to navigate through the scientific congress and truly get the most information for their specific disease area.

eha60Complementing the EHA Capacity Building Programme, Myeloma Patients Europe hosted a meeting of their MPE Advocate Development Programme, and the Acute Leukemia Advocates Network (ALAN), hosted by the Leukemia Patient Advocates Foundation, held their inaugural meeting. Both meetings were formally endorsed by the EHA.

The EHA Fellowship Programme, coordinated by the EuroBloodNet ePAG, offered 53 free congress registrations for patient advocates, amongst them 22 patient advocates with interest in CML. This year for the first time, the CML Advocates Network also offered a travel allowance for some of its members that made it possible for them to attend the congress. 

 

eha36This year’s EHA Patient Advocacy Track, which again consisted of two sessions in EHA’s scientific programme where the patient community defines the topics and selects all speakers, was jam packed with only standing room left. 

eha51The session about “Innovative Clinical Trial Designs, Adaptive Pathways and Patient Involvement in R&D” addressed that clinical trials in small populations of patients provide challenges to gather evidence on the therapeutic effect and safety of new treatment regimens. At the same time, in areas of high unmet medical need, patients and clinicians demand accelerated research and access to new therapies, while collecting solid evidence over time remains crucial. Building on existing regulatory processes, e.g. scientific advice, conditional approval, compassionate use and structures for risk management, innovative trial designs and EMA's new "Adaptive Pathways" (MAPPs) licensing scheme allow new approaches. These may potentially alter the way of drug development, replacing large Phase-III studies and single events of drug registration by an iterative process of data gathering and data evaluation. MAPPs are a prospectively planned process that need to involve all stakeholders, so understanding the different perspectives is crucial. This session covered the viewpoints of patients (“Patient perspective on new trial design, regulation and patient involvement”, Gilliosa Spurrier, Melanoma Patients Network Europe), regulators (“Adaptive pathways and other approaches to promote timely access to medicines”, Dr. Francesco Pignatti, European Medicines Agency), clinicians (“Designing innovative clinical trials: Methodology and practice”, Elihu H. Estey, USA) and medical societies (“How will the new EU Clinical Trials Regulation foster innovation in clinical trials”, Prof. Bernhard Wörmann, DGHO).

 

 

eha2The second Patient Advocacy Session covered the important topic of “Pregnancy During and After Treatment: Myths and Reality”. Fertility and pregnancy are a major concern for many young cancer patients, and patients´ needs are rarely met. In some cases, fertility preservation is successful. However, this is not always the case at the time of diagnosis. This session covered different dimensions of pregnancy and fertility during and after treatment, which sometimes implies a long journey and the need to overcome many informational, legal, ethical, societal, financial and clinical hurdles. The different speakers covered different perspectives, hurdles and potential approaches from a patient, clinical, research and bioethical viewpoint, addressing some persisting myths about what is and should be possible or even allowed from a patient, legal or clinical point of view. Presentations included the hematologist perspective (“The trade-off between treatment and real life”, Prof. J. Apperley, Imperial College), the patient perspective (“Myths, reality, ethics and country borders in fertility treatment”, Ananda Plate, Myeloma Patients Europe) and the perspective of a fertility expert (“Overcoming infertility after cancer treatment: IVF and egg/sperm donation”, Dr. A. Guillen, IVI Spain). The session was complemented by EHA’s Education Session on “Fertility preservation in patients with haematological malignancies”, complemented by presentations of three clinicians and a patient advocate.

eha30Another first at this year’s EHA congress was a joint Patient Advocacy Booth. The booth consisted of member organisations of the EHA Patient Organisations Workgroup, consisting of 9 European hematology umbrella organisations. The booth was used as meeting point for patient advocates but also by participants from the congress, and was a very popular booth nestled amongst all the exposition stands of NGO, societies and pharmaceutical companies. The programme managers of the CML Advocates Network, Lidija Pecova and Celia Marín, were on hand to assist advocates and visitors with any questions, guide them to the sessions, and point them in the right direction of where they were held.

Next year's congress will be held in Stockholm, Sweden on June 14-17, 2018. Save the date – and see you there!

To access to EHA presentations please, click below:

CML 2017: What's new at EHA? Prof. Tim H. Brummendorf

EHA and EuroBloodNET ePAG Anna Sureda

Lymphoma and CLL Prof. John G. Gribben

You can also visit our Flickr EHA 22 gallery here:

EHA 22