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Epilepsy Care – The WHO/ILAE/IBE Global Campaign Against Epilepsy

Published Online: June 4th 2011
Authors: Tarun Dua, Leonid L Prilipko, José M Bertolote, Hanneke M de Boer
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Overview

Epilepsy is one of the most common serious neurological disorders in the world; it has been estimated that around 1% of the world’s population has some form of epilepsy. More than four-fifths of the 50 million people with epilepsy are thought to live in developing countries.1 The treatment gap is alarming in these countries, where more than 80% of people with epilepsy do not receive appropriate treatment. 2 Epilepsy also leads to multiple interacting medical, psychological, economic, and social repercussions, all of which need to be considered. Fear, misunderstanding, and the resulting social stigma and discrimination surrounding epilepsy often force people with this disorder ‘into the shadows’.The social effects may vary from country to country and culture to culture, but it is clear that worldwide the social consequences of epilepsy are often more difficult to overcome than the seizures themselves.

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Since the problem is too complex to be solved by individual organizations, and to bring epilepsy ‘out of the shadows’, a Global Campaign Against Epilepsy was launched in 1997, “to improve acceptability, treatment, services, and prevention of epilepsy worldwide”.The campaign is conducted by the World Health Organization (WHO) in partnership with the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). The aim of the campaign is principally to reduce the treatment gap by providing better information about epilepsy and its consequences and to assist governments and those concerned with epilepsy to reduce the burden of the disorder.

A key concept of the campaign is that it includes interrelated global, regional, and national components. The strategy of the campaign includes two parallel and simultaneous tracks: raising general awareness and understanding of epilepsy; and supporting Departments of Health in identifying needs and promoting education, training, treatment, services, research, and prevention.3 The objectives of the campaign are:

  • to increase public and professional awareness of epilepsy as a universal, treatable brain disorder;
  • to promote public and professional education about epilepsy;
  • to change attitudes, dispel myths, and raise epilepsy onto a new plane of acceptability in the public domain;
  • to identify the needs of people with epilepsy on a national, regional, and global basis; and
  • to encourage governments and Departments of Health to develop their own national campaigns to improve prevention, diagnosis, treatment, care, services, and public attitudes.


The success of the campaign is reflected by the fact that regional conferences and declarations on epilepsy have been developed in all six WHO regions. Regional reports describing the state of epilepsy care in the regions have also been published.4,5 Another important activity has been the setting up of demonstration projects to develop a variety of successful models of epilepsy control that can be integrated into the healthcare systems of the participating countries and regions and, finally, applied on a global level. The objectives of the demonstration projects are to:

  • reduce the treatment gap and the physical and social burden of people with epilepsy by intervention at a community level;
  • train and educate health professionals;
  • dispel stigma and promote a positive attitude to people with epilepsy in the community;
  • identify and assess the potential for prevention of epilepsy; and
  • develop models for promotion of epilepsy control worldwide and for its integration into the health systems of participating countries.

These projects have been implemented, initiated, or planned in at least 17 countries in different regions. The largest of these projects was undertaken in rural areas of China to test a model for treatment of people with convulsive forms of epilepsy at primary healthcare level.This pragmatic study confirmed that a simple protocol was suitable, whereby physicians with basic training could treat people with epilepsy using phenobarbital, with good effect for most people with convulsive seizures.6

A very important endeavor of the campaign has been to provide information regarding the resources available for epilepsy care.This activity has been linked to WHO’s Project Atlas, launched in 2000, which is aimed at collecting, compiling, and disseminating information and data on the existing resources and services for mental and neurological disorders.7 An Atlas: Epilepsy Care in the World has been developed within the above project.8 The epilepsy atlas provides information from 155 of 192 WHO member states, one associate member (Tokelau), and four territories. In terms of population covered, the data pertain to 97.5% of the global population, making this report the largest compilation of resources related to epilepsy care in the world.The information in the epilepsy atlas is presented in four broad sections: the disorder, services, care providers, and public health aspects.The data included are presented as graphics, world maps, and written text. The results are presented as global, regional (six WHO regions), and by income categories (four World Bank categories) within each theme.9

The epilepsy atlas provides a snapshot of the current status of epilepsy services and care available in different parts of the world. The results confirm that the globally available resources for epilepsy care are insufficient when set against the large numbers of people needing such care and the known substantial burden associated with this disorder. In addition, there are large inequities across regions and income groups of countries, with low-income countries having extremely meagre resources. It is hoped that the availability of essential information regarding resources for epilepsy care will lead to greater awareness of the gaps among policy-makers. The data will be useful for global and regional, as well as national, epilepsy programs. On a global level, the data will help to make the world more aware of exactly how deficient epilepsy resources are and provide an impetus to international efforts to enhance these resources. On a national level, the analysis helps to identify areas that need the urgent attention of health planners and policy-makers within countries. It is hoped that personnel involved in caring for people with epilepsy will use the atlas data as an advocacy tool for dialog with governments, consumer associations, non-governmental organizations (NGOs), academic institutions, and development partners. There is a need for urgent, substantial, and systematic action to enhance resources for epilepsy care.

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