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WHO views on and commitments towards epilepsy. Tarun Dua. Epilepsy: priority area for WHO. The past The present And the future…………. WHO Programme on Neurological Diseases and Neuroscience. Emphasis on public health aspects Comprehensive analysis of problem
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Epilepsy: priority area for WHO • The past • The present • And the future………….
WHO Programme on Neurological Diseases and Neuroscience • Emphasis on public health aspects • Comprehensive analysis of problem • Information on country resources and services • Technical guidance on prevention and management • Strengthen capacities of countries to improve neurological care • In collaboration with relevant stakeholders
Epilepsy: the facts • Epilepsy is the most common serious brain disorder • Epilepsy is one of oldest disorders known (epileptics seized by the gods or the devil) • People with epilepsy viewed with fear, suspicion and misunderstanding • People with epilepsy subject to horrendous stigma • Many people with epilepsy suffer in silence, afraid to be found out
Epilepsy: The Figures • 250.000.000: one seizure in a life time • 50.000.000: people with active epilepsy • 42.500.000: PWE in developing countries • 2.500.000: new cases each year • 80% of aed’s sold in 20% of countries • 70% pwe can be seizure free with treatment • 80% not properly diagnosed, not treated
Epilepsy: The Global Campaign 1995 In WHO : revival activities + collaboration with neurology and neurosciences Increased collaboration with NGO’s Partnership between Professional (ILAE), Public/Patients (IBE) and Political (WHO) Organizations (Dr. L.L.Prilipko + Prof. E.H. Reynolds) WHO ILAE
“OUT OF THE SHADOWS”A Global Campaign against Epilepsy The Partners: The International League Against Epilepsy (ILAE) The International Bureau for Epilepsy (IBE) World Health Organization (WHO)
What is the Global Campaign? • Mission StatementTo improve the acceptability, treatment, services and prevention of epilepsy worldwide • The StrategyI. Provide platform for general awareness II. Assist Departments of Health in the development of National Epilepsy Strategy
GCAE: The Objectives • Increase public and professional awareness of epilepsy as a universal and treatable brain disorder • Raise epilepsy to a new plane of acceptability in the public domain • Promote public and professional education about epilepsy • Identify the needs of people with epilepsy at national and regional levels. • Encourage governments and departments of health, to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services and prevention
GCAE: The activities • Awareness and advocacy • Normative work • Information on country resources and services • Country projects
Regional Conferences • Goal: Develop and adopt Regional Declarations on Epilepsy • Participants: • Delegates of national + international IBE/ILAE • Public health experts of governments + universities • Representatives of Regional WHO + WHO HQ • Results: Between 1998-2003, conferences organized in all 6 WHO regions
Regional Reports • Contents • basic knowledge on epilepsy • basic facts such as epidemiological burden • Results • AFRO published 2005 • AMRO published in 2008 • EMRO in progress • EURO (almost) ready for publication • SEARO published 2005 • WPRO published 2005
Epilepsy Atlas: Conclusions • Facts and figures that are useful to promote greater awareness of the need for action among planners and policy-makers • Available resources for epilepsy care are insufficient with large inequities across regions and income groups of countries • Need for urgent, substantial and systematic aciton to enhance reources for epilepsy care within countries
Has Project Atlas been useful? • Yes! • Generated awareness among health professionals to collect data about resources • It has been used extensively for advocacy especially in developing countries • Useful source of information for policy makers, academic professionals and public health experts • Helpful for monitoring of resources
Project on Global Burden of Epilepsy • GBD 2005: systematic assessment of the data on all disease and injuries and produce comprehensive and comparable estimates of the burden of diseases, injuries and risk factors for two time periods, 1990 and 2005 • Comprehensive estimates of the burden of disease due to • Idiopathic epilepsy • Secondary epilepsy • Epilepsy as a risk factor