Lifting the Burden of Neurological Diseases

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An EFNA/EAN Meeting

Hosted by MEP Karin Kadenbach
European Parliament – Room A3H-1
23 January 2019 – 10.00am to 12.00

 

MEETING REPORT

At this meeting in the European Parliament focusing entirely on neurology / neurological illness, Professor Franz Fazekas, President of the European Academy of Neurology (EAN) welcomed everyone and presented apologies from the meeting host Karin Kadenbach, MEP, who could not join the meeting due to health problems.

First speaker Prof. Günther Deuschl, Past President of EAN, then spoke about the global burden of neurology as illustrated by EAN’s research project ‘Neurocare’. Deuschl explained that the study aims at better understanding the burden of neurology and neurological care, as well as its disparities in Europe. The data from the Global Burden of Disease (GBD) study is being analyzed for this purpose in 51 out of 53 European countries. 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, Epilepsy, MS, Headaches, Stroke, and Dementia/Alzheimer’s).

Based on Disability Adjusted Life Year metrics – 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).

Summarising his talk, Deuschl emphasized the following;

  • Neurological disorders are among the commonest sources of health loss in Europe
  • They rank third for DALYs and deaths (after cardiovascular diseases and neoplasms)
  • Almost every other European inhabitant is suffering from a neurological disease
  • Stroke is the leading source of burden attributable to neurological disorders in Europe, followed by headache and Alzheimer’s Disease
  • In the 27-year period of the study, a steady increase was observed for neurodegenerative diseases (AD and PD) and a decrease for stroke and epilepsy
  • The decrease of stroke is highly significant in Western Europe and less remarkable in Central and Southern Europe and can be explained by the differing control of modifiable risk factors and access to care.

Second speaker Prof. Ettore Beghi, International League against Epilepsy (ILAE), highlighted the high placing of neurological disorders in the latest GDB Report and illustrated the disparity between disease burden and resource allocation in Europe. Results show that 45.9m people suffered from epilepsy in 2016. 1.4m people were newly diagnosed in 2016. Future GBD rounds should consider the aggregation of all causes of secondary epilepsy. In this respect, regional data could add to the exhaustive analysis. Further progress is being made through two projects: i) ESBACE that aims to provide standardized data on prevalence, burden and care of epilepsy throughout Europe and ii) Neurocare (see above).

More details can be found in the corresponding presentation.

The third speaker, Prof F. Fazekas, focused on treatment and care of stroke in Europe and corresponding gaps. He emphasized that stroke is a major cause of death and disability, which not only affects ageing population but can also occur in quite young people. Significant differences in mortality rates of stroke across Europe exist, which indicates risk factors such as eating disorders, smoking and hypertension. Also, major differences exist in availability of effective treatments. Building on these findings, Prof Fazekas remarked that the main pillars for fighting stroke mortality should be stroke unit care as well as i.v. thrombolysis and thrombectomy, as was also shown by European Brain Council’s Value of Treatment study. Concluding:

  • As with other neurologic diseases there exist significant differences in stroke care throughout Europe
  • These contribute to excess mortality, lost years of quality living, lost work force and excess spending for long-term patient care
  • Professional medical societies and organisations attempt to address these deficits and the consequences for our society
  • We need the support of the EU parliament to strengthen these efforts including adequate research funding.

More details can be found in the corresponding presentation.

Chair of the meeting J. Bowis, informed participants that when he first got involved with neurology, it wasn’t prominently featured on the political agenda. This has now changed. Equally at the EU level, when he was an MEP, he raised the profile of neurology to the extent that it was given a separate budget line. He observed that the statistics shown by the three EAN speakers were both alarming and encouraging, and asked all present to come up with a plan of action of what one wants politicians to do.

A distinguished 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 started by providing a snapshot of his departments activities. He discussed various ways in which the EC supports research and, in particular, brain research. He emphasized that €2.4b has gone to neurological disorders under the current EU Research Framework Programme (FP), including both basic and translational research. He added that, thanks to the growth of ERC programme, much more funds are going to basic research, after which he illustrated a number of projects and initiatives that collaboratively tackle neurological health. It is important to notice that when it comes to neurological disorders, the EC has a close collaboration with EU member states, e.g.  JPND and Neuron projects. Importantly, a new project has recently been launched – European Brain Research Area (EBRA) led by the European Brain Council. Mr Hogan finished by talking about what his colleagues from DG SANTE are doing, including managing the best practices portal. This is being done through a Steering Group on Health Promotion, Disease Prevention and Management of NCDs. These will be showcased at the workshop/marketplace in June to help member states to prioritize.
More details can be found in the corresponding presentation.

F. Destrebecq, European Brain Council’s Executive Director, briefly introduced EBC which is representing the voice of patients, clinicians, researchers and industry, by promoting brain research and brain health. He mentioned EBC’s 2010 study assessing the cost and burden of brain disorders. Building on this paper, EBC worked on a study assessing the cost of non-treatment which resulted in 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. He added that it deserves to be completed by studies such as Neurocare to have a better picture at the national level which could potentially feed into development of initiatives such as national brain plans. Mr Destrebecq confirmed S. Hogan’s statement by saying that EBC is now leading the EBRA project. The EU “Joint Programme Neurodegenerative Disease” (JPND), Neuron-Eranet and Human Brain Project are part of its consortium. On a strategic level EBRA seeks alignment of strategies and findings of the European and global founders. concluing, he remarked that a clear window of opportunity is opening to advocate for an ambitious next EU Framework Programme for research, have an appropriate health research cluster and make sure that neurological and mental health is a formal part of the programme. In this context, it will be important to have a brain research mission.

J. Bowis asked how to get the messages across to other Commission Directorates, apart from Research and SANTE. F Destrebecq replied that this was the rationale behind the VoT. While cost was just showing the problem, VoT is demonstrating that non treatment is more costly than treatment itself. J. Bowis agreed, reminding that health is an investment rather than a burden.

Prof. G. Waldemar, representing the BioMed Alliance followed, introducing the Alliance that is a relatively young group representing 29 leading European research and medical societies. Its goal is to of improve the health and well-being of all European citizens through promoting excellence in European biomedical research and innovation. She emphasized a need to make health research a top priority in Horizon Europe. Medical research today is getting more complex so there is also a need to make more collaborative efforts. Against this backdrop, the main recommendation from the Alliance is to create a European Council for Health Research. The group also recently proposed a Steering Board for Health to create more synergies and promote patient and societal engagement as well as to provide scientific advice.  Prof. Waldemar reflected on how the BioMed Alliance could help to promote neurological health. As a start, it is important to acknowledge complexities. To have better access to health care we need medical research, continuity and excellence, and that’s what the Alliance promotes. We also need education. By promoting medical education and research we are sure that we will also help neurological disorders. Neurological societies have to make a strong case that neurological research should be part of the wider health and research agenda, she concluded.  More details can be found in the corresponding presentation.

Prof. K. Sipido, chair of the Scientific Panel for Health (SPH), emphasized the importance of engaging with policy makers. She said that she is a cardiologist by training and, with this in mind, she pointed to comorbidities which show we have to work together across disciplines, and also across different structures and organizations, e.g. the various DG’s 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 emphasized 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 MS. 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 a EU-wide vision and strategy, synergies, continuity, visibility & leadership, more equality between European countries and finally citizens and patient being at the centre.

Concluding, Prof Sipido made a call for addressing adequately the challenges for health research: “ 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”. More details can be found in the corresponding presentation.

J. Bowis reiterated his earlier point by saying that we should propose solutions and their implementation, rather than waiting for politicians to do so. One or two countries is a good start and this can be then scaled up. He then asked K. Sipido about morbidity. She answered that we need strong specialist knowledge. Specializations should be brought together into the common health programme. But this needs support from research. We also need education (doctors and scientists) and training.

J. Bowis thanked the panelists and broadened the meeting by asking for contributions from the audience.

W. Oertel (EBC Vice President) explained that now in emergency rooms neurology is one of three main players. Additionally, neurology is coming from year five during medical studies to the first two years. He also wondered to what extent statistics that we use are usable throughout the globe.

T. Marson (EAN) pointed out that we have data that tells us about differences in burden amongst EU countries. When it comes to provision of care, there are massive variations between and within countries. Moreover, similar resources can result in providing both good and poor care. We should alter structure of care to make it more efficient.

G. Deuschl added that Neurocare should tell us what the needs are and shall demonstrate long term changes. The message will say that we have problems and we understand better where they are and, together with VoT project, we have solutions to address them.  During the next months the study will provide better information on what can be helpful and will offer solutions for some of the diseases.

K. Sipido said that one has to see that what is politically possible is not sufficient. Moreover, we tend to speak too scientifically. She wondered how we should really interact and come to solutions that can be implemented by people who make decisions.

W. Oertel added that if we have solutions we need structures to implement and test if they are correct. This is why there is a need for the European Council for Health.

J. Bowis pointed out that the EC is moving in that direction. Health was included in the European Semester process which is key to make national politicians understand that there is a cost to health but also cost to not investing.

R. Shakir (EAN) noticed that we saw huge discrepancies across Europe. He wondered if the EU has similar scoreboards to WHO where they compare countries. This, done in a diplomatic way, could give extra incentives to governments.

J. George (Alzheimer Europe) built on the point of discrepancies. He said that the wall separating east from west still exists – in the field of dementia it was still pretty much the case. We don’t have ambitious plans for the next health programme. Discussions if we should have health are still pending within the EC – and we need to ensure we don’t just focus on research.

In the last comment, F. Fazekas expressed his concern that not enough clinical research is being carried out which is linked to a number of complexities.

J. Bowis thanked the audience and announced the closing addresses.

C. Tănăsescu, MEP expressed his hope that this meeting is the first of many to come. The data presented here showed that there is no doubt that we need to develop new treatments, although there is still a long road ahead. In order to have a more accurate image the data should take into account recent changes due to migrating populations. Good news is that EC is already funding a lot of those efforts. He hoped that efforts will continue in the next mandate and concluded that involving all stakeholders is the real key to accelerating the fight again neurological diseases.

J. Jaarsma, EFNA’s President, briefly talked about EFNA, which is a pan-European organization of patient groups representing neurological illnesses. One of its initiatives includes the MEP Interest Group on Brain, Mind and Pain which focusses on addressing policy issues of relevance to patients. EFNA will continue this group after the 2019 elections. Many of the points discussed at the current meeting will be included in EFNA’s newly updated policy documents. She finished by thanking MEPs, speakers, panelist and meeting chair, and expressed her hope that everyone will continue to support neurological health.