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The ILAE/IBE/WHO Epilepsy Global Campaign History

2002; Wiley; Volume: 43; Issue: s6 Linguagem: Inglês

10.1046/j.1528-1157.43.s.6.5.x

1528-1167

E. H. Reynolds,

Epilepsy research and treatment

As President of the International League Against Epilepsy (ILAE) I attended my first two annual meetings of the Neurosciences Nongovernmental Organisations (NGOs) in association with the World Health Organisation (WHO) in Geneva in December 1993 and 1994. It seemed to me that these were merely forums for the exchange of information and that the potential existed for a much more active and effective relationship with WHO. I therefore sought a personal meeting with Professor Costa e Silva, then Head of the Department of Mental Health of WHO. The League and the International Bureau for Epilepsy (IBE) were both growing and by then truly global organisations that worked well together. It occurred to me that a partnership between the professional (ILAE), the public/patients (IBE), and the political (WHO) could be a very powerful one for addressing the needs of people with a common, universal, hidden, neglected, and stigmatised brain disorder. Such ideas are well understood and accepted today, but I can assure you that in 1995 and 1996, they were not, in either the ILAE, the IBE, or the WHO. There were many obstacles and anxieties to overcome. The first obstacle was that it took a year to arrange a meeting with Professor Costa e Silva, which was postponed 3 times. This was very good training for what was to follow! When I eventually came to Geneva to meet him on January 16, 1996, I was not optimistic, but I was very pleasantly surprised. I brought with me Professor Pierre Jallon, whom I had appointed Chairman of the ILAE Commission on Developing Countries, not only because of his experience with and commitment to developing countries, but also because he was based at the University of Geneva in close proximity to the WHO. Professor Costa e Silva brought with him, as expected, Dr. Leonid Prilipko, Head of the Section of Neuroscience, and also, unexpectedly, Professor Li Shi Chuo, whom I did not know (Fig 1). I was delighted to learn not only that he had a personal interest and commitment to people with epilepsy in China but also that he was the current Chairman of the Executive Board of WHO! There was a considerable meeting of minds that day in which the concept of the ILAE/IBE/WHO Global Campaign Against Epilepsy was born. I went off, much encouraged, to sell the idea to the ILAE and the IBE, while Professor Li Shi Chuo and Professor Costa e Silva set about seeking WHO support. Left to right: Ted Reynolds, Li Shi Chuo, Hanneke de Boer, and Leonid Prilipko. Epilepsy is the most common serious brain disorder and a global problem affecting all ages, races, social classes, and countries. It imposes enormous physical, psychological, social, and economic burdens on individuals, families, and countries, especially because of misunderstanding, fear, and stigma. These problems are universal but are greatest in the developing world, where 85% of the 50 million people with epilepsy live and as many as three fourths receive no diagnosis or treatment. In June 1996, the ILAE's Commission on Developing Countries arranged a 2-day Workshop in Geneva with experts from the ILAE, the IBE, and the WHO, and representatives from every continent. The more general and the more specific needs of people with epilepsy in developing regions were discussed and identified in more detail as a prelude and platform on which to build the Campaign (1). Several studies over the previous decade had shown that "the treatment gap" in developing countries varied between 60 and 98%(Table 1)(2,3). It also was recognised that despite availability of treatment in developed countries, the social problems relating to lack of public understanding and negative attitudes were very great, the quality of services was poor, and fewer than a handful of governments had any plans for people with epilepsy in their country. The ILAE/IBE/WHO Global Campaign Against Epilepsy ("Out of the Shadows") was announced at the ILAE European Congress (The Hague, The Netherlands) and the ILAE and IBE Asian and Oceanic Congresses (Seoul, South Korea) in September 1996, when the opportunity also was taken to strengthen the ILAE and IBE Regional structures, especially in Asia/Oceania. The Campaign to bring epilepsy out of the shadows was formally launched in Geneva on June 19, 1997, and 2 weeks later on July 3, 1997, in Dublin at the 22nd ILAE/IBE International Congress, supported by the Irish President, Mary Robinson, now UN Commissioner for Human Rights. John Bowis participated in both launches, as he has done again today, as a representative of national governments. I first met John as a Minister for Health in the British Government in 1994, and I saw for myself the impact of an influential Minister with a commitment to epilepsy. In many ways, he became a model for me of the potential for a Global Campaign with its political objective to stimulate similar government commitment and action everywhere. I am extremely grateful for his guidance and support then, now and throughout the Campaign, including his role in supporting and promoting the European Declaration and the European "white paper" on epilepsy. In Dublin, the Campaign held a symposium on the Politics of Epilepsy at which John Bowis, Tony Coelho (former U.S. Congressman with epilepsy), Mary Benotti (Irish MEP), and Senator Joe Doyle (Irish Senator and then Lord Mayor of Dublin, who has epilepsy) all participated. The objectives of the Campaign have been summarised in the Campaign press releases and brochure, in the Director-General's speech and elsewhere (2). As Dr. Brundtland rightly points out, the first 3 years have concentrated on increasing awareness, creating acceptance, and improving education, including within the ILAE, IBE, and WHO organisations themselves. The Campaign has developed Global, Regional, and National programmes and initiatives (Table 2), which correspond to the global, regional, and national structures of these worldwide organisations (4). At the global level, the most important achievement has been the development and acceptance in December 1999 of the Cabinet paper on the Global Campaign, which raises the status of the Campaign to the highest level within the new priorities of the reorganised WHO. This has paved the way for today's second-phase launch and a new 4-year plan. As emphasised by Dr. Brundtland, the Campaign against Epilepsy is at the forefront of this year's World Health Day and Report on mental and brain disorders. The presence today of the mental health advisers of all six regional offices of WHO, as well as representatives of the regional structures and commissions of the ILAE and the IBE, reflects the progress of initiatives already undertaken in several regions, with others soon to follow. The first Regional Declaration on Epilepsy was in Europe in October 1998, after a conference of >100 professionals, patients/public, and politicians from all areas of Europe in Heidelberg sponsored by the German government. In the year 2000, similar Regional Declarations based on the European format were developed in Africa in Senegal (May), in Latin America in Chile (September), in Asia and Oceania in India (November), and in North America in the United States (December). In all, >1,200 experts from >100 countries have participated in these Regional Conferences and Declarations. The European Declaration has already led to much work in the preparation of a "white paper" for Europe and the European Parliament to be published and promoted next month. Most encouraging of all in the last 3 years is that >50 countries in all continents have joined the Campaign in their own "Out of the Shadows" initiatives. With global and regional support, the main thrust of the Campaign is to encourage and assist local national programmes and plans for epilepsy where the country's needs and solutions are best understood and implemented. Finally, in the first phase of the Campaign, much effort and research has gone into planning Demonstration Projects in specific developing countries or regions of countries to evaluate the best practice for the implementation of public education and professional training to provide sustainable long-term services within the existing health care structures to reduce the treatment gap (5). It is hoped that the outcome of such Demonstration Projects will serve as models for other countries and governments in that region to develop national plans to bring epilepsy "out of the shadows." Acknowledgment: I thank Dr. Brundtland, Dr. Yach, Dr. Saraceno, and many other colleagues in WHO, including Dr. Suzuki and Professor Li Shi Chuo, for putting the full weight of WHO behind this Campaign; Hanneke de Boer and Leonid Prilipko, with whom it has been a pleasure to work in a mini-League/BureauWHO Secretariat/Partnership; John Bowis for his inspiration and support; and members of the Executive Board of the Campaign, the Executive Committees, and so many other colleagues in the ILAE and the IBE, who have helped or who are helping to bring Epilepsy "Out of the Shadows."