“Knowledge and awareness are crucial in recognizing neurological conditions” as they often are invisible, even to doctors – this was one of the major issues that patients and patient advocates brought up at the MEP meeting with the Interest Group Brain Health and Neurological Conditions, organized by EFNA. This would lead to many patients feeling blamed for their disease, when hearing things like “it’s something psychological” or “you’re doing this by yourself”. So, educating and thus empowering patients in being able to better estimate their own condition is also important. They also emphasized the need of going “beyond medicine, as there is also the social dimension,” meaning the patient is not the only patient, but also their families.
MEPs Tomislav Sokol and Tilly Metz highlighted the importance of the new EHDS (European Health Data Space), as it will connect specialized centers and allow a cross-border data sharing, which will be a crucial step towards faster and more precise diagnoses, but also in terms of research and creating new medicines and treatment. And lastly to also allow patients to be involved about how their data is used and shared. Looking into accessibility to medicine within the EU, there is a huge discrepancy between the different countries – and “this sends a completely wrong message – the access to life-saving medicine should not depend on geography”, said MEP Romana Jerković. So facilitating access in all member states is the next big step.
Our coordinator Holm Graessner addressed the need of sustaining the ERNs – on European as well as on national levels – and encouraged to also make more use of the ERNs, for research as well as for HTA (Health Technology Assessment) purposes. Both policy asks were being fully supported by the MEPs: “We need to sustain the funding for ERNs [… and] use ERNs much stronger than we are doing now”, said Tomislav Sokol.
