On 23 January 2019, the European Academy of Neurology (EAN) and the European Federation of Neurological Associations (EFNA) organised a meeting on “Lifting the Burden of Neurological Diseases”. It was hosted in the European Parliament by Karin Kadenbach, MEP.
The meeting aimed to present the latest data showing the growing burden of neurological ill health, both at the European and global level. This has been illustrated by the new data from a project run by EAN: Neurocare. EAN President Prof. F. Fazekas and Past President Prof. G. Deuschl explained that Neurocare aims at understanding the burden of neurology and neurological care, as well as its disparities in Europe and is based on data from the Global Burden of Disease (GBD) study.
Based on DALY’s, neurological diseases amount to 28% of the overall disease burden in Europe. Globally this figure is 23%. This, added to the total number of neurological diagnoses in these countries, leads to the conclusion that more or less every second European has a brain disorder (although neurological multi-morbidities have to be taken into account here).
The project is collecting data at country level and also allows for a deeper qualitative study of care provision in six of the main neurological diseases (Parkinson’s, epilepsy, MS, headaches, stroke, and dementia/Alzheimer’s). In particular, stroke and epilepsy were discussed, respectively by Prof. F. Fazekas and Prof. E. Beghi (International League against Epilepsy). 45.9 million people had epilepsy in 2016, with 1.4m people being newly diagnosed that year. Both disorders constitute a major cause of death and disability and contribute to excess mortality, lost years of quality living, lost work force and excess spending for long-term patient care.
Chair of the meeting J. Bowis said that, while several decades ago neurology was not present on the political agenda, this has now significantly changed. He asked all present to come up with a plan of action for politicians. We should propose solutions and their implementation, rather than waiting for politicians to do so.
A panel of experts then provided advice on how stakeholders can work together to advocate for increased priority for neurological disorders at the global, EU and Member States level.
S. Hogan, Head of Sector Neuroscience at DG Research emphasised that EUR 2.4 billion has gone to neurological disorders under the current EU Research Framework Programme (FP), including both basic and translational research. Importantly, a new project has recently been launched - European Brain Research Area (EBRA), led by the European Brain Council (EBC).
EBC Executive Director F. Destrebecq mentioned the Value of Treatment for Brain disorders study (VoT) in which treatment gaps were described through various case studies. Effective clinical interventions were identified for cost-saving solutions for governments. It deserves to be completed by studies such as Neurocare.
Prof. G. Waldemar, representing the BioMed Alliance emphasised a need to make health research a top priority in Horizon Europe and create a European Council for Health Research as well as a Steering Board for Health to create more synergies and promote patient and societal engagement and to provide scientific advice.
Prof. K. Sipido, chair of the Scientific Panel for Health (SPH), emphasised the importance of engaging with policy makers. A cardiologist by training, she pointed to comorbidities that show we have to work together across disciplines, and also across different structures and organisations, e.g. the various DGs such as SANTE, CONNECT and RTD. The SPH - an expert group within the Commission, introduced in to Horizon 2020 with support of the European Parliament - consists of individuals selected for their expertise. They provide foresight and recommendations involving consultation with stakeholders. She emphasised, here, that a proper engagement with patients into research and implementation is necessary. Prof. Sipido recommended to include health among the missions and stressed the importance of collaborative research across national borders. Indeed 90% of research is taking place at the level of Member States. However, international, cross-border, collaborative research is funded predominantly by the EC. This is why the European level is important but a common policy between MS and EC and all actors is needed. In order to increase the impact of European health research, one needs an EU-wide vision and strategy, synergies, continuity, visibility and leadership, more equality between European countries and finally citizens and patients being at the centre.
Concluding, Prof Sipido made a call to address the challenges for health research more adequately:
“We need research-based evidence for that, we need to address the challenges of rising health care costs, to respond to citizens and implement high level recommendations.”
C. Tănăsescu, MEP concluded by saying that data presented here, showed that there is no doubt that we need to develop new treatments, although there is still a long road ahead.
EFNA President J. Jaarsma closed by mentioning one of EFNA initiatives - the MEP Interest Group on Brain, Mind and Pain that focuses on addressing policy issues of relevance to patients. Many of the points discussed at the current meeting will be included in EFNA’s newly updated policy documents.
Jean Georges, Executive Director of Alzheimer Europe attended the meeting.
