Stephanie Kramer, Head of Communications, Advocacy & Policy - European Brain Council

The complexity of the brain has long hindered attempts to fully understand it— knowledge that is fundamental in the search for cures for brain disorders. These challenges are reflected by the continuously growing burden brain disorders impose on health care systems, economies and, most importantly, the people affected by them, especially as the global population ages.

With 9.0 million deaths and 16.5% of global deaths, neurological disorders are the second leading cause of death after heart disease and with 276 million Disability-Adjusted Life Years (DALYs) and 11.6% of global DALYs, it is the leading cause of disability. In Europe alone, the statistics are alarming – neurological disorders ranked third after cardiovascular diseases and cancers representing 13.3% of total DALYs and 19.5% of total deaths. Stroke, dementias, and headache were the three most common causes of DALYs in the EU. This is in addition to the overwhelming burden of mental health disorders, which are conservatively estimated to affect 27% of the total adult EU population yearly, amounting to over 82.7 million affected persons. Together, brain conditions – mental and neurological alike – account for an immense burden.

Direct healthcare and non-medical costs of brain disorders are high, making up for 60% of the total costs (40% attributable to lost productivity) – estimated at a cost of 800 billion euro per year in Europe and increasing with severity and chronification of disease. What is more, cost and burden studies currently date back 10 years, meaning the numbers are surely underestimated and efforts to update them are necessary.

Budgetary restrictions across the EU are threatening the sustainability of the European social welfare model as a whole and make it even more important to achieve cost effectiveness in the use of resources in health systems.

Meeting patient needs & learning from the COVID-19 pandemic

Despite the escalating costs of brain disorders, numerous needs of patients are unmet. Many people living with a brain disorder remain untreated or inadequately treated although effective treatments exist. EBC’s Value of Treatment study conclusions highlight the need for more research, early, if possible prodromal, diagnosis and intervention, integrated seamless care underpinning timely care pathways as a solution to address value-based health care in Europe and access to the best treatments available.

COVID-19 presents an opportunity to reset fragmented health and care systems so that they are integrated, driven by people and communities and resilient in the face of future systemic shocks. Seizing the opportunity to think how systems transformation and design will lead to improving population health and wellbeing and ensure we are better equipped to respond to future crises, this will require a paradigm shift for health systems, moving on from a hospital-centric focus and a disease specific approach to multimorbidity and transmural coordinated care patterns.

Innovating health care approaches

The COVID-19 pandemic has brought opportunities to rethink integrated care models across Europe and the lessons learnt from this unprecedented global health emergency should lead to optimal and continuous care for all people. Despite how strong the political keenness to come back to normal is, current “curative” health care systems should not go back to normal once redeployed in the post-COVID-19 era. The curative approach to health care, focusing on disease in the individual rather than from a holistic perspective, cannot lead to a healthier population and more equitable access to care. Instead, we should establish health care systems that value prevention with balance between curative and preventive measures and acknowledge health policy that emphasizes the social determinants of health.

In the context of the COVID-19 pandemic, chronic and irreversible conditions (such as multiple sclerosis), revealed to be a good example of the need to rethink health care systems so that every person living with such a condition has their needs met for timely diagnosis, personalised treatment, interdisciplinary and coordinated care and adaptable support in daily life. In this regard, a research-driven project offering tangible policy changes, “RETHINKING MS in times of COVID-19”, conceptualised by the European Brain Council in 2021, sheds light on the challenges faced by people living with MS and highlights good practices that emerged in the midst of pandemic disruptions. We are now facing the great opportunity for Europe to apply the lessons learned and to redefine our health care systems, if deemed valuable both for patients and health care professionals.

Advocating for a new normal

Advocating for a shift in treatment and research innovation has been a constant over the last decades, however, as COVID-19 brought the world to a standstill – including patients’ care – it is clear that we need to go beyond the old recommendations and work toward a new normal that addresses the healthcare system pitfalls of the past. Looking at the current situation and the aftermath of COVID-19 crisis, health, welfare and economics will continue to be interlinked while addressing unmet needs and treatment gaps, as well as economic and organisational challenges.

Stephanie Kramer joined EBC in March 2016 and leads the Communications, Advocacy & Policy team. Her work revolves around effectively communicating all EBC work to the general public, EU institutions and policymakers and all other relevant stakeholders; shaping the communications of EBC’s advocacy work, policy reports, research projects and EU projects; managing the advocacy and policy monitoring within the health and research space – particularly involving the brain; as well as planning EBC’s external events.

Stephanie holds an LLM in International Law from the University of Edinburgh, and a BA in International Relations & Diplomacy. She has previous communications, external relations and project management experience from internships at the United Nations and private sector organisations. She was a member of the 3rd European Health Parliament. Stephanie has lived and worked in 12 countries around the world, including the United States, the Netherlands, Thailand and Chile.