Event Report: Making Neurology A Public Health Priority

‘Making Neurology A Public Health Priority’
MEETING REPORT & REPLAY
Tuesday, May 23rd 2023, 08.00-10.00hrs CET.

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 prioritisation 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)

MEP-Tomasz-Sokol-on-stage-2

Opening remarks were provided by MEP Tomasz Sokol (Croatia, EPP). MEP Sokol is active in the area of healthcare in the European Parliament as a coordinator for the European People’s Party in the Subcommittee on Health, Rapporteur for the European health data space and shadow Rapporteur on pharmaceutical legislation reform. MEP Sokol explained that while brain disorders have not been a focus in the European Parliament, it is important that there is a renewed MEP Interest Group on Brain Health and Neurological Conditions.  Interest Groups can play an important role in engaging stakeholders, including media, to raise awareness and put pressure on the European Commission.

The burden of neurological conditions & the need for action

– Tony Marson, Secretary General of EAN

Tony Marsden EAN on stage

Dr Tony Marsen, Secretary General of the EAN, discussed the burden of neurological conditions and the need for action. Dr Marsen explained that the burden of neurological conditions is greater than diabetes, cancer, and cardiovascular diseases combined. He believes that 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.

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

– Orla Galvin, Executive Director of EFNA

Orla Galvin EFNA on stage

Dr Orla Galvin, Executive Director at EFNA, discussed policy opportunities in Europe and the importance of understanding the lived experience of those affected by 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, and equitable access to treatment/services/supports are all key goals.

EU Pharma Legislation and the impact on patient access

– Julie Spony, Policy Officer, EPF

Julie Spony, Policy Officer at the European Patients’ Forum (EPF) gave a presentation on EU Pharma Legislation and the impact on patient access. EPF is advocating for patient access to medicines in the EU pharmaceutical legislation revision and believe 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.

Concluding Remarks

– Russel Patten, Vice-President of EFNA 

Russell Patten Closing Remarks

Concluding remarks were offered by Russell Patten, Vice-President of EFNA. Russell emphasised the need for collaboration between patients, neurologists and organisations like EAN, EFNA and the EPF. He acknowledgment of the importance of working with decision makers, highlighting MEP Tomasz Sokol’s role in the European Parliament and recognised the European Parliament’s influence in healthcare, despite health being a national competence. Russell stressed the importance of lobbying for change at all levels – local, regional, national, European, and international. He acknowledged that progress will take time (20, 30, 40, or even 50 years) but engagement with decision-makers is crucial.

There were several excellent questions and responses at this session so we would highly encourage you to watch the full session replay.

Thank You To All

We would like to extend a huge thank you to everyone who supported this event, particularly 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 that 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.

Event Gallery

 

Notes

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