Covering a range of mental and neurological disorders, the VoT study examined health gains and socio-economic impacts of best health interventions (pharmacological and psychosocial alike), and addressed the current early diagnosis and the treatment gap of the various brain disorders. The conference itself focused on addressing the burden of diseases and issues in the current health care system, the health services delivery and care pathways design and proposing evidence-based and cost-effective solutions to achieve high value for patients.
With the completion of the first VoT project, EBC provided the necessary policy recommendations to address the treatment gap and its consequences for patients and citizens at large.
EBC President Prof. David Nutt welcomed the full room by introducing the details of the project, and that the working groups worked on how to “close the treatment gaps for brain disorders”. “EBC is not only looking at the socio-economic impact and value of healthcare interventions, but is also emphasizing how timely care pathways need greater integration and how better collaboration can be achieved in the future for the benefit of those living with, or at risk of, a brain disorder,” Prof. Nutt pointed out.
Prof. Nutt went on to co-present the project with Prof. Günther Deuschl, President of the European Academy of Neurology, to discuss its intentions, development and findings. VoT wanted to explore bridging the early diagnosis and treatment gap, as despite the escalating costs of brain disorders, numerous needs of individuals at risk and patients are unmet, and around 8 out of 10 people living with a brain disorder remain non-treated or inadequately treated although effective treatments exist. Health services, generally, remain quite fragmented, and working groups collectively found that more patient-centred and seamless, interdisciplinary care is still needed. Furthermore, though there has been significant progress in brain research over the last 50 years, and basic and translational research are at a threshold for new findings with a major impact on treatment, continued investment into brain research remains as important and necessary as ever.
Prof. Patrice Boyer, EBC Vice-President, elaborated on both EBC and VoT’s Call to Action for more research on brain disorders and the need for a healthcare system transformation to implement a seamless, coordinated system of “care networks” at national, regional and local level. He continued to summarize the key policy recommendations that the VoT white paper concludes with: implementing best practice to improve the patient’s flow at healthcare level; basic, clinical and translational research is imperatively needed, now more than ever at research level; and converging action towards EU wide brain plan and promoting the set-up of knowledge hubs on a health policy and health system governance level.
Keynote speaker Mr. Martin Seychell, Deputy Director-General, Directorate General for Health and Food Safety, European Commission, remarked that sustainability of healthcare is an increasing issue, stating that there is “no social Europe without health”. Alongside second Keynote Speaker Dr. Line Matthiessen, Acting Director, Health Directorate, Directorate General for Research & Innovation, European Commission, the two pledged the EU Commission’s continued support for brain research.
The European Commission has significantly increased funding for research on brain diseases, with 5.3 billion euro ear-marked between 2007 and 2017. However, this sum, shared between the 165 million Europeans with brain disorders, works out at just over 3 euro per person per year.
On the side of economic analysis, EBC partnered with the London School of Economics (LSE) to produce economic evidence on the value of treatment of brain disorders to inform decision-making. Prof. Martin Knapp of LSE presented the “very strong” economic case for investing in treatment for brain disorders after carrying out an overarching analysis of the economic evaluation and case studies. Closing treatment gaps is widely beneficial – for patients, families, providers, payers, policy-makers – and the economic arguments need to be seen alongside other essential elements in shared decision-making, especially by these various stakeholders.
The project and all communication from the conference highlighted the main issue: there is no cure for most brain disorders. More and better research is needed to develop treatments and to provide for earlier intervention.
Presentations were given by all leaders of the nine working groups, which covered the patient journeys and economic analysis of Alzheimer’s disease, Multiple Sclerosis, Normal Pressure Hydrocephalus (NPH), Stroke, Headache, Schizophrenia, Parkinson’s disease, Restless Legs Syndrome and Epilepsy. This was done through a panel discussion of all working group leaders, as well as through a 2-hour poster presentation session during lunch, where working groups had the opportunity to present their work to smaller groups of attendees.
The working group’s analyses continued to be presented throughout the day, with the panel discussions moderated by journalist, Peter O’Donnell. *Further details on individual case studies can be found below, and furthermore, in the white paper.
The second panel discussion brought together various experts to discuss the VoT research conclusions and policy recommendations. Representatives from organisations like the European Commission, European Parliament, Organisation for Economic Co-operation and Development (OECD) and European Observatory on Health Systems and Policies discussed the policy recommendations provided in the White Paper, and views by patient and carer advocates such as The European Federation of Families of People with Mental Illness (EUFAMI) and AGE Platform Europe gave depth to the conclusions found by the two-year study.
Mr. Omar Cutajar, Research Attaché of the Maltese Permanent Representation to the EU in Brussels, closed the conference with a short recap of the collaboration between EBC and the Maltese EU Presidency and the work that has been accomplished. He affirmed further support and called for further collaboration and continued work for brain research in the European Union.
The full day conference came to a close with final words from Prof. David Nutt, who thanked on behalf of EBC, all members and partners for being part of this challenging “journey”, and looks forward to future work together, the continuance of the Value of Treatment project, and for continued work in improving the lives of those living with brain disorders across Europe, and the world.
*Epilepsy treatment gaps vary from 10-20 % in developed countries to 75% in low-income countries—well-coordinated and accessible services from first seizure to complex epilepsy surgery can result in reduction of mortality, improve quality of life and is cost saving.
Societal costs of Alzheimer’s disease in Europe are reaching an estimated 190 billion euro, and though brain pathology can now be detected 20 years before the onset of dementia, diagnosis is often made at a later stage of the disease and treatment is symptomatic only.
The large treatment gap of Schizophrenia can be closed by timely, effective and consequent prevention, treatment and management—and early intervention has also shown to improve outcome in a cost-effective way. Investing in research on optimizing interventions, in information systems, awareness building and destigmatization, in training of the mental health workforce, and in better access and delivery of health services are further prerequisites guaranteeing optimal health in severe mental disorders like schizophrenia.
Headache is the 3rd disability leading cause worldwide, and creates societal costs of over 100 billion euro per year. Specialist care is lacking, and the chronic disorder often remains undiagnosed, mistreated or underrecognized as a disorder.
Multiple sclerosis is the leading cause of non-traumatic disability worldwide, and places a societal cost burden of over 15 billion euro per year in the EU. Early treatment and a brain healthier lifestyle slow MS progression and indeed reduce the disease societal and health care costs—for example, lifestyle factors, such as cigarette smoking habit and low vitamin D serum levels, may accelerate disease worsening by 2-fold.
Parkinson’s Disease is the second most common neurodegenerative disorder, with approximately 1.3 million patients across Europe, and costs of €13.4 million per year. Diagnosis is still clinical, and delay of diagnosis averages at about 2.3 years. Furthermore, no preventive or disease-modifying treatments exist, meaning individualized care and access to new treatments can play a major role in the lives of patients. The working group concluded that the amount of disease-specific research funding should be allocated depending on the impact of the disease on the population and the economy of the respective society.
Normal Pressure Hydrocephalus (NPH) is a very common disease in the elderly, manifesting in around 5% of the population over 65. Unlike some of the other disorders covered by VoT, very effective treatment is readily available, but still NPH very often remains undiagnosed and very often untreated. NPH treatment is life-saving, improves the quality of life and is cost effective.
Moderate to severe Restless Legs Syndrome (RLS) affects 2.5% of the European population, and ranks 5th for socioeconomic disease burden of brain disorders in Europe as the costliest neurological disease according to the working groups’ findings. However, there is a still a lack of knowledge in diagnosing and treating RLS, meaning patients often go misdiagnosed and untreated. Policies aiming to increase disease recognition and search for new treatment strategies need to be intensified to reduce substantial societal cost.
Stroke is the leading cause of morbidity/mortality in Europe, but major treatment gaps still exist. 18% of strokes are associated with Atrial Fibrillation, the most common heart rhythm disturbance, yet AF generally remains undertreated. Furthermore, there is a low implementation of specialised stroke units across Europe, which leaves patients misdiagnosed or improperly treated upon onset of stroke. Past this, there is also low access to rehabilitation.