The Global Burden of Epilepsy
Epilepsy is a truly unique global burden affecting all ages, races, social classes and countries. As one of the worlds most common serious brain disorder, epilepsy affects at least some 50 million people worldwide. Epidemiological studies have shown that it is uniformly distributed around the world with only slight variations in prevalence influenced by local environmental factors such as trauma associated with wars, road traffic accidents or poor obstetric care; or brain infections associated with poverty, malnutrition and epidemics; or age related diseases in more developed countries.
Historically it can be traced to all ancient civilisations. For example, Babylonian descriptions of epileptic seizures in the second millennium BC are very similar to those we see today. Epilepsy imposes enormous physical, psychological, social and economic burdens on individuals, families, communities and countries, compounded by the misunderstanding, fear and stigma which has prevailed for millennia and is still widespread today. These problems are universal but are greatest in the developing world where 85% of people with active epilepsy live and of whom, three quarters received no adequate diagnosis or treatment, the so-called treatment gap. This is all the more regrettable as 70% of people with epilepsy could be seizure-free with relatively cheap treatment.
Birth of the Concept
As Presidents of ILAE and IBE Edward Reynolds and Hanneke de Boer attended their first two annual meetings of the Neurosciences NGOs in association with the WHO, which were held in Geneva in December 1993 and 1994. It seemed that these were merely forums for the exchange of information but it occurred to Edward Reynolds and, almost simultaneously, to Dr Leonid Prilipko (WHO officer responsible for neurology and neuroscience) that the potential existed for a much more active and effective relationship between the NGOs and WHO. A first meeting on this subject took place in Geneva on January 16th 1996. From ILAE were involved Dr Reynolds and Dr Pierre Jallon, chair of the ILAE Commission on Developing Countries; from WHO, Dr Prilipko and Professor Costa e Silva (Director of the WHO Cluster on Mental Health) and Professor Shichuo Li (Assistant Director General of WHO and Chairman of the Executive Board). There was a considerable meeting of minds that day in which the concept of the ILAE/IBE/WHO Global Campaign Against Epilepsy was born.
In June 1996 the ILAE Commission on Developing Countries arranged a two day Workshop in Geneva with experts from ILAE, IBE and WHO and representatives from every continent. Epidemiological, medical, social and economic aspects of epilepsy in developing countries were reviewed as a platform on which to build the Campaign. Both the League and Bureau then agreed that the potential benefits of the Campaign for people with epilepsy everywhere outweighed the potential challenges and risks of the Campaign, which was then formally announced at the ILAE European Congress in The Hague, the Netherlands and at the ILAE and IBE Asian and Oceanic Congresses in Seoul, South Korea, in September 1996.
Launch of the Campaign
The first phase of the ILAE/IBE/WHO Campaign was formally launched in the presence of the WHO, League and Bureau leadership in Geneva on June 19th 1997 and again two weeks later on July 3rd 1997 in Dublin at the 22nd ILAE/IBE International Epilepsy Congress in the presence of the Irish President, Mary Robinson, later UN Commissioner for Human Rights; John Bowis MBE, former UK Minister of Health and Member of the European Parliament (MEP); Tony Coelho, former US Congressman, who has epilepsy; Mary Banotti, Irish MEP; Joe Doyle, Irish Senator and then Lord Mayor of Dublin, who also had epilepsy.
Phase I: 1997 2001
The first phase of the Campaign focused on its first three objectives i.e. increasing awareness, creating acceptance and improving education.
The successful outcome of this phase is reflected in the milestones summarised below and the higher priority given to the Campaign by WHO, which culminated in the second phase plans and launch.
Milestones of Phase 1
- Cabinet Paper : At the global level the most important achievement was the development and acceptance in December 1999 of a Cabinet Paper on the Global Campaign which raised the status of the Campaign to the highest attainable level within the priorities of the newly reorganised WHO under Dr Gro Harlem Brundtland. Epilepsy was the first and, to date, the only neurological disorder to be accorded this status. The ILAE/IBE/WHO Global Campaign had become the model for other NGOs who aspire to Global Campaigns for their own disorder. Indeed the ILAE/IBE/WHO Global Campaign Against Epilepsy was at the forefront of the WHOs 2001 World Health Day and Report on Mental and Brain Disorders. Read the Cabinet Paper click here
- Regional Conferences: At the regional level a major activity was a series of regional Conferences and Declarations designed to raise awareness, acceptance and education about epilepsy and the Campaign. The first of these was the European Conference on Epilepsy as a Public Health Priority which resulted in the development of the European Declaration on Epilepsy (Appendix 2) held in Heidelberg, Germany in October 1998. In the year 2000 similar regional Declarations, based on the European format, were developed in Africa in Senegal, Latin America in Chile, Asia and Oceania in India and North America in the United States. In all, more than 1,200 representatives from ILAE, IBE and WHO, from other non-governmental organisations and UN agencies, from governments, universities and health care providers from well over 130 countries, representing millions of people with epilepsy have participated in these regional Conferences and Declarations. You can find Regional Declarations under the Document Library section click here
- Raising Awareness: In order to raise awareness for the Campaign, for epilepsy in general, the treatment gap and the social, cultural and economic burden for people who have this condition, their relatives and society as a whole, many sessions have been and are being organised during international congresses, among others during the biennial IBE/ILAE international and regional epilpesy congresses. Campaign articles have been published in peer reviewed journals on the results of the Demonstration Projects and a number of stand-alone publications were prepared.
- Impact of the Campaign on a National Level: One of the main objectives of these global and regional activities has been to encourage national member associations of IBE and ILAE and Departments of Health to develop their own national or local Out of the Shadows initiatives. A subsidiary objective has been to stimulate the establishment of new Chapters of ILAE and new Full and Associate Members of IBE in countries where they did not exist. By 2001 fifty countries had begun local projects under the umbrella of the Campaign.
Phase II: 2001-2005
Following the success of Phase I, and the elevation of the Campaign to one of WHOs highest priorities, a high profile launch of the second phase of the Campaign was held in Geneva on February 12th 2001 led by the Director General of WHO, Dr Gro Harlem Brundtland. Also participating were the executive leadership of the League, Bureau and the division of non-communicable diseases and mental health of WHO, together with representatives of 13 missions of WHO country members, 24 member associations of ILAE and IBE, 4 NGOs in neuroscience/neurology and 17 private sector organisations.
Dr Brundtlands address to this Launch is probably the most important political public health statement about epilepsy in the history of the disorder. Emphasising the scale of the problem, especially in developing countries, she indicated that epilepsy was at the forefront of her plans for the 2001 World Health Day and Report on mental health and brain disorders.
By concentrating on increasing awareness, creating acceptance, and improving education in Phase I, the foundations for achieving the other two Campaign objectives i.e. identifying and addressing needs at national government level had been laid. A central feature of the four year Phase II would be the development of Demonstration Projects in order to illustrate good practice in providing services to people with epilepsy and which may be used as models of what can be achieved beginning in China, Senegal, Zimbabwe and Brazil.
Read Dr Brundtlands address click here
Go to Demonstration Projects section click here
Phase III: 2005-2009
Phase III of the Campaign commenced in 2005, following the elections of the new ILAE and IBE Executive Committees. A number of new activities started and others continued from phase II into phase III.
- Demonstration Project in Georgia: During phase II of the Campaign Demonstration Projects were set up in the AFRO, AMRO, SEARO and WPRO Regions, but no such activity had been initiated in European Region. After ample discussions with the Regional Advisor for Mental Health it was decided to select Georgia as the first country to develop a Demonstration Project in the European Region as the country fulfilled all formal selection criteria for such a project. Read about the Demonstration Project in Georgia click here
- Project on Legislation and Epilepsy: People with epilepsy often experience limitations to their enjoyment of economic, social and cultural rights. They have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care. Legislation is an important means of addressing these problems and challenges. Well-crafted legislation based on internationally accepted human rights standards can prevent violations and discrimination, promote and protect human rights, enhance the autonomy and liberty of people with epilepsy and improve equity in access to health care services and community integration. Legislation can serve to legally enforce the goals and objectives of policies and programmes related to epilepsy. The current reality, however, is that the laws that affect the lives of people with epilepsy are often outdated. They frequently fail to promote and protect human rights adequately, and they sometimes actively promote the violation of rights. Read more about the Legislation Project click here
- Development of a Demonstration Project on Surgery: Epilepsy surgery is a safe and effective alternative treatment for a wide variety of epileptic conditions which cannot adequately be treated with antiepileptic drugs. Investment in epilepsy surgery centres, even in the poorest regions, could greatly reduce the economic and human burden of epilepsy. However there is a marked treatment gap with respect to epilepsy surgery even in industrialised countries. In view of this, WHO initiated contact with the president of the World Federation of Neurosurgical Societies in order to investigate whether a project on surgery may be feasible, possibly in collaboration with this NGO. Read more about the Surgery Project click here
- The Atlas Project: In 2005 the Atlas of Epilepsy Care in the World has been published as a result of a GCAE project started in 2002. Data has been collected from 160 countries covering the 97.5% of the world population trough a questionnaire developed by a group of experts. Read more about the Atlas Project click here
- Project on Stigma – Collaborative Research on Epilepsy Stigma (CREST): Understanding and dispelling stigma is one of the stated aims of the Global Campaign Against Epilepsy. Within the Campaign in 2003, a grant application for a pilot project on stigma in epilepsy was awarded by the Fogarty Foundation (National Institutes of Health, USA) to a group of European experts under the leadership of Prof Ann Jacoby, University of Liverpool. This project involved ethnographic studies to explore prevailing beliefs and attitudes to epilepsy in two developing countries: China and Vietnam. The project defined and validated theoretical models of stigma and its link to disease burden, and culturally specific measures of outcome were formulated for use in future intervention studies. Throughout its implementation, the social science capacity in the participating countries facilitated strong collaboration for future research. Read more about CREST click here
- Development of Evidence-based Guidelines: Guidelines for the treatment of epilepsy in childhood and adolescence are being drawn up in collaboration with the WHO Department of Child and Adolescent Health and Development. The WHO Collaborating Centre Oasi Centre in Troina, Italy has taken the lead of the project. The project on development of guidelines for neonatal seizures was initiated in 2003. An algorithm was developed for diagnosis and treatment of neonatal seizures especially in resource limited settings. The target audience was clinicians in developing countries. The algorithm addressed the following areas: history, physical examination, causes, approach to assessment, principles of treatment, antiepileptic drug management and prognosis. The algorithm was published in Epilepsia in June 2007.
- Measuring the Impact of Campaign Activities at a national level: The Global Campaign Against Epilepsy has been ongoing for 12 years now and during that time many global, regional and local activities have been conducted within the framework of the Campaign. However the Campaign has also inspired and stimulated ILAE and IBE chapters and members to undertake their own activities using the Campaigns name, its eclipse logo and/or its Out of the Shadows slogan. Not all of these chapter/member based activities are well known outside of the country or region where they have taken place. In 2009 the Campaign Secretariat decided to try and quantify the scope and scale of all the Global Campaign related activity that has taken place at a national level. This information provided a much better idea of how the Campaign has been used, how well it has succeeded and how improvements may be made.
Read the survey report click here