by Günther Deuschl
Under the leadership of Jes Olesen, Denmark, the European Brain Council (EBC) has developed a ‘cost of brain disease’ project in the last decade, which essentially became one of the most important databases for the development of European Research policy. In 2012 the costs for neurological disease alone were estimated to be 303 billion €/year and the costs for all brain diseases added up to 798 billion €/year, which is about 6 times the budget of the European Union.
In 2015 the EBC has developed the next initiative, the ‘Value of Treatment project’ which was presented to the public late in June this year. The idea behind was to calculate the costs of not treating brain disease. The methodology of the approach was to identify gaps in the ‘journey of the patient through the disease’ and to look for the potential for improvement. Finally, nine frequent diseases were chosen: Epilepsy, headache, stroke, Alzheimers disease, Parkinson’s disease, restless legs syndrome, multiple sclerosis, normal pressure hydrocephalus and schizophrenia of which 8 were neurological diseases. These diseases are representing the majority of neurological brain disorders although important disease like peripheral nerve diseases and many others are lacking and will be supplemented in the near future. EAN hast significantly contributed to this effort as members of the EAN scientific panels have taken care of the neurological projects and the board members have coordinated the neurological projects.
The study has identified important gaps between the current and accepted scientific knowledge about the treatment of these diseases and the currently established management pathways of the health care system in representative European countries.
One important outcome of these studies was that early diagnosis and treatment of many neurological diseases is one of the major gaps. For example for epilepsies, with an earlier expert diagnosis and treatment, the number of patients which become seizure free could double from 30 to 60%, a highly cost-efficient procedure. For Alzheimer’s disease several treatments are at threshold to get established as disease modifying interventions. Thus a modelling of the early diagnosis is timely and has shown that the implementation of early diagnosis would be cost saving. For Parkinson’s disease it is known that non-treatment in the early phase is leading to a rapid worsening of life quality. Early diagnosis and treatment is therefore highly cost-efficient.
Another area that has a huge potential is the implementation of structured care services. For headache the implementation of well-explored structured healthcare services would not only relief a majority of patients from this bothersome condition but would even be cost saving for countries as different as Luxembourg, Spain and Russia. Drug treatment of multiple sclerosis can meanwhile be disease-modifying and their early and knowledgeable application will save quality of life for the patients and be cost-efficient. For stroke the most important intervention would be the Europe-wide implementation of stroke units. This would not only save lives and disability but also be highly cost-effective for all the European countries. Normal pressure hydrocephalus can be effectively treated. Currently the condition is heavily underdiagnosed. Establishing an early diagnosis and treatment programme would be cost-effective. For a disease as frequent as restless legs education of healthcare professionals and the public would be a highly efficient step.
The analysis of the VOT-project has shown that for all these brain diseases more research is needed. Our knowledge about the disease mechanisms is far too limited. Investing into research has shown to be fruitful for neurological patients and must therefore be expanded. This request comes at a time when the European Union Administration is preparing for the next EU framework program beyond 2020. The text of the white policy paper of the VOT project can be downloaded under: http://www.braincouncil.eu/wp-content/uploads/2017/06/EBC_white_policy_paper_DEF26072017_Low.pdf.
These results are important for the neurologists as some issues may be integrated in our plans. I am encouraging neurologists in Europe to communicate this project to the public. Involving the patients and to alert the general public to these important health issues is key to make a further step forward for a better treatment of brain diseases.