On the occasion of the approaching World Multiple Sclerosis Day (30 May 2021), the European Brain Council is excited to announce the release of its new policy paper, “RETHINKING MS in times of COVID-19”. This new paper is part of the main report “RETHINKING MS in Europe”, a research-driven project offering tangible policy changes to improve the lives of people living with MS across Europe, building on the 2017 Value of Treatment report from the European Brain Council.

About multiple sclerosis (MS)

Multiple sclerosis is a progressive disease of the central nervous system where an immune response destroys brain, optic nerve and spinal cord tissue, leading to irreversible motor disability and cognitive impairment over time. Typically, diagnosis occurs between the ages of 20 and 40, greatly impacting a person’s career, income and family life. Affecting over 1.1 million people across Europe, MS brings with it considerable costs to health and social welfare systems, as well as the wider economy in terms of decreased productivity from both people with MS and their carers.

There is currently no cure for MS and management focuses on timely diagnosis, disease-modifying therapies (DMTs), symptomatic therapies, rehabilitation and social care. Personalising and optimising each of these components can help people adapt to life with MS. However, suitable pharmacological therapies are not available to treat all symptoms, very often interrelated, and healthcare professionals may not be adequately equipped to fully support people outside of clinical settings, placing added importance on rehabilitation and social care to support daily living.

RETHINKING MS in times of COVID-19

Due to its complexity and variability of symptoms, MS is generally difficult to treat and handle. Include a health emergency such as the COVID-19 pandemic, which has significantly impacted every sphere of society, and the repercussions have been particularly severe for people living with chronic conditions such as MS. We have witnessed the concerning shift in triage guidelines regarding treatment prioritisation in an emergency, which saw treatment for people living with chronic conditions deprioritised.

How did people living with MS manage to continue receiving care despite this decreased prioritisation of their treatment plans? What were the challenges people with MS experienced during the coronavirus pandemic and what lessons can be learned from them?

The objective of this new chapter, ″RETHINKING MS in times of COVID-19″, is to provide concrete and tangible testimonies from relevant stakeholders – clinicians, MS patients, patient advocates, pharma representatives – impacted by the disruption in care, which proved both an obstacle and an accelerator for the implementation of good practices.

We highlight how the lives of people living with MS and their families have been affected by COVID-19. In addition to providing a voice to those side-lined by the pandemic response, the gathered testimonies shed light on the need to rethink MS and MS care in terms of coordination, integration and prioritisation in order to ensure optimal care for people living with MS in Europe. Our aim is to contribute to continued awareness raising of MS at EU policy level as well as to feed into the current European policy debate on the direct and indirect consequences arising from the COVID-19 pandemic and encourage stakeholder engagement in EU health policy making.

Visit the virtual exhibition “Living with MS during COVID-19: A case for rethinking MS in the EU”

Through this EBC’s unique virtual exhibition, you will be able to view portraits of people supporting EBC’s RETHINKING MS call. The portraits feature people living with MS, clinicians, care givers, policymakers and industry representatives who want to make a difference in how MS care and treatment are delivered in Europe. While you navigate the exhibition, you will also come across videos and infographics showcasing the critical need for improved, patient-centred treatment.