Despite the knowledge that almost one in three people globally will develop a neurological disorder at some point in their lifetime – Neurology is still not treated as a public health priority.  Neurological disorders are the leading global cause of disability-adjusted life years (DALYs) and the second leading cause of death yet the impact of neurological conditions are often overlooked due to their complexity⁽¹⁾. 

There is no clear public health prioritization for neurological conditions.This meeting of the Brain Health and Neurological Conditions MEP Interest Group was proudly presented by The European Federation of Neurological Alliances (EFNA) and the European Association of Neurologists (EAN) to highlight this issue.

Event Replay

Event Details

Opening Remarks:  MEP Tomasz Sokol (Croatia, EPP)

The burden of neurological conditions & the need for action

– Tony Marson, Secretary General of EAN

Brief Overview Of Talk

• The European Academy of Neurology (EAN) represents 47 national societies and works to understand and treat neurological conditions.
• Neurological conditions have a high burden in Europe, affecting individuals across the life course.
• They represent the third most common cause of death and disability in European citizens.
• The burden of neurological conditions is greater than diabetes, cancer, and cardiovascular diseases combined.
• There are significant variations in the workforce and provision of healthcare for neurological conditions across Europe.
• Investment in research, services, and healthcare systems is needed to improve outcomes for people with neurological conditions.
• A brain health strategy is necessary to address the challenges and promote healthier brains and nervous systems.
• The strategy should focus on prevention, awareness, collaboration with public health, policy support, research advancements, education, and reducing stigma.
• Upfront investment is needed to reduce costs and increase productivity in society.

Understanding the lived experience and policy opportunities for Neurological Conditions in Europe

– Orla Galvin, Executive Director of EFNA

Brief Overview Of Talk:

• Brain health is an important topic that includes neurological conditions and impacts individuals across Europe.
• Neurological conditions are underfunded, under-researched, and stigmatized.
• There is significant variability in the provision of services and resources for neurological conditions across different countries.
• The global action plan on epilepsy and other neurological conditions aims to reduce stigma, impact, and burden.
• Strategic objectives include raising policy prioritization and strengthening governance for neurological conditions.
• Brand health encompasses the health of the entire human form, not just the brain.
• Access to diagnosis, therapeutics, and care for neurological conditions is often delayed or limited.
• Policies and plans supporting neurological conditions should be implemented in all EU countries.
• Media engagement is crucial to raise awareness and advocate for improved resources for neurological conditions.
• Collaboration among stakeholders can lead to clear asks, benefits, and targets to address challenges in neurology.
• Patient empowerment, real-world evidence generation, eradicating stigma, equitable access to treatment/services/supports are key goals.
• Many people with neurological conditions experience stigma and have limited access to satisfactory management strategies.

EU Pharma Legislation and the impact on patient access

– Julie Spony, Policy Officer, EPF

Brief Overview Of Talk

• The European Patients Forum (EPF) is advocating for patient access to medicines in the EU pharmaceutical legislation revision.
• Access to medicines should be based on principles of availability, affordability, adequacy, appropriateness, and accessibility.
• The revision aims to boost the development of medicines and address unmet medical needs.
• Measures include additional regulatory protection for a continuous supply of products in all member states and incentives for addressing unmet medical needs.
• EPF suggests including patient input in defining unmet medical needs and considering quality-of-life burdens.
• The use of comparative clinical trial data can impact cost-effectiveness assessments and patient access.
• Earlier dialogue among stakeholders is needed to align requirements and ensure patient involvement in trial design and selection.
• Incentives for repurposing existing medicines should also consider patient-generated evidence for new indications.
• The legislation emphasizes antimicrobial resistance and its impact on patient access to medicines
• Introduction of transferable exclusivity vouchers to boost the development of new antibiotics and antimicrobials
• Concerns regarding the effectiveness and potential cost of vouchers on public health systems
• Proposal of annual revenue guarantee scheme for antibiotic access in EU member states
• Introduction of pay-to-play model where pharmaceutical companies without antimicrobials pay a portion of revenue to fund development
• Measures to improve early entry of generics and biosimilars, reducing regulatory protection period by two years
• Proposal to keep the sunset clause for marketing authorization termination if the product is not placed on the market within three years
• Increase in patient representation in pharmacovigilance risk assessment committee and committee for human Medicinal Products
• The desire for clarity on patient organization representation in scientific working parties and legal definition inclusion
• Request for a representative in the Coordination Group for mutual recognition and decentralized procedures
• Strengthening the role of patient organizations as data generators, the ability to submit data for all medicines addressing unmet medical needs
• Measures to address medicine shortages, the establishment of a critical list of medicines by EMA with strong patient involvement
• Publication of information on shortages on publicly accessible websites by member states’ competent authorities
• Advocacy for a system allowing patients and organizations to report shortages, creation of EU-wide database with information from national databases and legislation on falsified medicines

Concluding Remarks

– Russel Patten, Vice-President of EFNA 

Concluding Remarks In Brief

• Thank you to the panelists for joining and sharing their wisdom and passion
• Appreciation for the audience present and those joining remotely
• Apologies for not being able to take more questions from the audience
• Emphasis on the need for collaboration between patients, neurologists, and organizations like en, efinor, and TPF
• Acknowledgment of the importance of working with decision makers, highlighting Tommy Slab’s role in the European Parliament
• Recognition of the European Parliament’s influence in healthcare despite health being a national competence
• Mention of discussions about health becoming a prerogative of treaty power in the European Union
• Example given of EU reviewing pharmaceutical legislation affecting health operations in Europe
• Importance stressed to lobby at all levels – local, regional, national, European, and international
• Reference to the impact of WHO’s epilepsy and neurological Action Plan on neurology awareness at different levels
• Adoption of the 10-year intersectoral global action plan on epilepsy and other neurological disorders as a framework for future work
• Acknowledgment that progress will take time (2030, 40, 50 years) but engagement with decision makers is crucial
• Call to politicians to prioritize neurological diseases considering their prevalence (one in three people affected)
• Expressing gratitude to f9 In the end organization representatives and Tony for their participation and support from EPF
• Appreciation for good moderation by God throughout the session

We would like to extend a huge thank you to everyone who supported this event, especially MEP Tomasz Sokol for his attendance and constant support for Neurology.  We would also like to thank the European Association of Neurologists (EAN) for co-hosting this event and for providing the live-streaming team and technology so this event could reach as many people as possible.  Lastly, to everyone who showed up on the day, asked great questions, and committed their time to support the prioritization of Neurology as a public health policy – your attendance and interaction hugely increased the impact of the event and were sincerely appreciated by all.

We look forward to welcoming you to our next Brain Health & Neurological Conditions event in Spring 2024.

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Notes

1. For more information on these statistic see the excellent WHO Position paper on “Optimizing brain health across the life course”.