The European Brain Council’s Stephanie Kramer tells HEQ about collaboration, research and the need to support brain health.
Brussels-based non-profit organisation the European Brain Council (EBC) aims to act as a single voice for the 179 million Europeans living with mental or neurological brain conditions. EBC Head of Communications, Advocacy and Policy Stephanie Kramer talks about prioritising brain health and the burden, treatment and policy needs of brain conditions.
What is the role of the EBC in the European brain health sector? What are your main objectives as an organisation?
The European Brain Council is a network of key players in the ‘Brain Area’, with a membership encompassing scientific societies, patient organisations, professional societies and industry partners. A non-profit organisation based in Brussels, its main mission is to promote brain research with the ultimate goal of improving the lives of the millions of Europeans living with brain conditions, mental and neurological alike.
With the aim to speak with one voice, EBC stands as the platform to foster co-operation between its member organisations and other stakeholders, consistently promoting dialogue between scientists, industry and society. As showcased by its growing portfolio of projects, research and policy papers, as well as events, EBC emphasises the importance of continued interaction with the European institutions to build strong European health policies, raising awareness and encouraging education on the brain and the repercussions of neurological and mental health conditions on society as a whole.
What are the key challenges currently facing the management and treatment of brain conditions, both mental and neurological?
Brain conditions, mental and neurological alike, account for a large burden on the European population. In 2017, 307.9 million neurological disease diagnoses alone were counted in the EU28 countries; and 540.3 million neurological disease diagnoses were reported in the WHO European region. Across Europe, neurological disorders alone accounted for an estimated 21% of all deaths.1
Additionally, psychiatric conditions such as depression, anxiety disorders and alcohol and drug use disorders affect more than one in six people across the European Union in any given year.2 It was estimated conservatively that every year 27% of the total adult EU population is affected by a mental disorder, amounting to over 82.7 million affected persons.3
Despite this high prevalence, numerous conditions of the brain are shrouded in mystery. Compared to other disease areas, the pace of innovation in this field has traditionally been hindered by multiple factors, starting with the complexity of the brain itself.
Even after considerable advances in basic neuroscience, the complete understanding of brain functions and the mechanisms behind brain disorders remains some way into the future, mainly due to the complexity of the system itself. As a consequence, a large number of brain conditions remain without a disease modifying therapy or cure and both fundamental and translational research is still highly needed. Developing treatments that can significantly improve the lives of those living with brain disorders is extremely challenging. Timelines for developing medicines and devices required to treat central nervous system (CNS) conditions alone can take up to 18 years4 (compared to the average 12 years5 for other drug pipelines) and new drugs face low approval rates.6 CNS drug development rates are continuously hindered by the complexity of the conditions, increased drug development costs and the high risk of failure throughout the pipeline.7
Can you tell me about the EBC Call to Action? How can public policy be updated to alleviate the burden of brain conditions?
The EBC Call to Action – and more recent documents such as the Brain Mission and 2019 Election Manifesto – declare the need for a co-ordinated approach to tackling brain disorders and increased recognition and support from public (health) authorities. Since the Call to Action, EBC’s member organisations and like-minded societies have advocated for a European brain plan which would allow for a more collaborative, integrated and comprehensive approach to taking on brain disorders and further support Member States in efforts to combat the impact of these disorders.
Robust strategies at national level and strong EU-wide co-ordination efforts are needed to effectively address the burden of diseases involving brain dysfunctions. EU Member States should work closely with patient representatives, scientific societies and clinicians towards designing and establishing National Brain Plans. These plans aim to provide a holistic strategy to accelerate brain research and reduce the impact of brain disorders.
EU decision-makers can also play a major role in ensuring the necessary steps to transform Europe into a global leader with respect to treatment development: to create an innovation-friendly environment and sustain scientific breakthroughs in the field of brain disorders.
It should be said that well-evidenced improvements to clinical care are crucial to patients’ quality of life and to improved access to treatments. The redesign of healthcare systems to become proactive rather than reactive can, furthermore, play a strong role in the prevention and improvement of care for EU citizens.
Horizon Europe holds the potential to accelerate the development of novel treatments for improving the lives of people affected by mental and neurological conditions and could ultimately reduce the disease burden of brain disorders if designed and implemented well. In order to do so, the European Union needs a vision that addresses brain research as one key priority. This should be transversal across the forthcoming Framework Programme; and we call the Commission and Member States to make of it a key priority for the next Strategic Planning exercise.
If our goal as Europeans is to ensure increased leadership in fields such as research and innovation at a global level, we undeniably need to be making bolder decisions.
Could increased collaborative efforts between the medical, industry and policy fields accelerate research and innovation?
Continued research and development in the brain space is crucial. Major developments in non-communicable diseases have demonstrated the immense benefits to be gained from dynamic collaboration between all stakeholders committed to progress, encompassing patient organisations, academics, scientists, medical experts and industry.
Researchers play a key role yet without patient engagement, public and policymaker support, pharmaceutical research and development, entrepreneurial inventions, and more, the brain space remains stagnant and fragmented. Without these key players working together, no progress can be made. Enhanced multi-stakeholder engagement in the brain ecosystem is needed to foster dialogue, exchange knowledge, accelerate investment in research and innovation and facilitate treatment and cure development.
The EU-funded European Brain Research Area (EBRA) project,8 co-ordinated by the European Brain Council in partnership with the Human Brain Project, ERA-NET NEURON and the EU Joint Programme on Neurodegenerative Disease Research (JPND) is a prime example of the European Commission’s vision for improved facilitation of research across Europe. The project in itself was designed as a catalysing initiative for brain research stakeholders to streamline and better co-ordinate brain research across Europe while fostering global initiatives.
Collaboration in the field of brain disorders is less prevalent than in other fields such as oncology – for example, public-private partnerships, which bring together top academic institutions and the pharmaceutical industry, are still relatively underdeveloped.7
The brain community has many examples of successful collaborations and more continue to exist. Through projects like the above, community-building activities such as the EBC-led Brain Innovation Days.9 and continued policy work, improved solutions are in sight. Ongoing work in the field of innovation and to demonstrate the value of innovation is currently underway to help create an enabling environment to foster investment in innovation in brain disorders in Europe and propose concrete avenues to remove existing barriers.
Are there any notable developments or current issues in the world of brain research which you think our readers should be more aware of?
Under the current global circumstance, it would be remiss not to mention COVID-19. One year in, evidence is growing of the severe mental and neurological consequences of the virus.
EBC last year released a statement10 on the lessons learned from COVID-19, particularly the importance of putting health and research first. This was early in the pandemic and despite neurological consequences starting to manifest, the statement focused more on the disruption such a pandemic and the necessary emergency responses can cause to crucial ongoing research, including brain research.
The pandemic has been treated as a societal emergency, as it should be and as it should continue to be before it can be contained and cured. Infectious diseases, especially those like COVID-19, are societal reminders that health and medical research remain as vital as ever. They serve as a reminder that we as a society are not invincible and have a long way to go in understanding not only the human body but how it reacts to and manifests different diseases.
EBC has now released a stronger statement, summarising the direct impact of COVID-19 on the brain,11 with severe mental and neurological consequences. See the statement for a full summary of severe mental and neurological consequences, based on research review.
Brain researchers have been working to understand how the virus impacts the brain as more cases appeared with neurological symptoms and growing mental health issues. What growing research reveals now is that the public response can no longer be limited to mass vaccination and scenarios of swift returns to ‘normal’. The global COVID-19 response must also treat the pandemic as a wake-up call to ensure that public response takes the heavy long-term consequences in mind, as the impact of the coronavirus on brain health alone during the last months has been a major and dramatic one with severe mental and neurological consequences.
1 The Lancet Public Health, VOLUME 5, ISSUE 10, E551-E567, OCTOBER 01, 2020, The burden of neurological diseases in Europe: an analysis for the Global Burden of Disease Study 2017; Deuschl, G, et al. https://doi.org/10.1016/S2468-2667(20)30190-0
2 OECD/European Union (2018), Health at a Glance: Europe 2018: State of Health in the EU Cycle, OECD Publishing, Paris/European Union, Brussels, https://doi.org/10.1787/health_glance_eur-2018-en
3 Wittchen HU, Jacobi F, Rehm J, Gustavsson A, Svensson M, Jönsson B, Olesen J, Allgulander C, Alonso J, Faravelli C, Fratiglioni L, Jennum P, Lieb R, Maercker A, van Os J, Preisig M, Salvador-Carulla L, Simon R, Steinhausen HC. The size and burden of mental disorders and other disorders of the brain in Europe 2010. Eur Neuropsychopharmacol. 2011 Sep;21(9):655-79. doi: 10.1016/j.euroneuro.2011.07.018. PMID: 21896369.
4 Mohs, RC and Greig, NH. Drug discovery and development: Role of basic biological research. Alzheimer’s Dement. (New York, N. Y.) 3, 651–657 (2017).
5 Torjesen, I. Drug development: the journey of a medicine from lab to shelf | Career Feature | Pharmaceutical Journal. The Pharmaceutical Journal Available at: https://www.pharmaceutical-journal.com/test-tomorrows-pharmacist/tomorrows-pharmacist/drug-development-the-journey-of-a-medicine-from-lab-to-shelf/20068196.article. (Accessed: 26th February 2019)
6 Pankevich, DE, Altevogt, BM, Dunlop, J, Gage, FH and Hyman, SE. Improving and accelerating drug development for nervous system disorders. Neuron 84, 546–53 (2014).
7 Phillips AG, Hongaard-Andersen P, Moscicki RA, Sahakian B, Quiron R, Krishnan KR, Race T. (2014) Proceedings of the 2013 CINP Summit: innovative partnerships to accelerate CNS drug discovery for improved patient care. Int J Neuropsychopharmacol. 18(3). pii: pyu100. doi: 10.1093/ijnp/pyu100.
8 European Brain Research Area, https://www.ebra.eu
Head of Communications, Advocacy and Policy
European Brain Council