Introduction: Epilepsy in the World

The launch of the Second Phase of the International League Against Epilepsy (ILAE)/International Bureau for Epilepsy (IBE)/World Health Organisation (WHO) Global Campaign Against Epilepsy in Geneva on February 12, 2001, was a milestone in the history of epilepsy and indeed of the League and the Bureau. It reflected the recognition of epilepsy as a global health problem and challenge of high priority and the elevation of the campaign to the highest WHO level, the first neurologic disorder to be accorded this status. During the 1990s, the ILAE and IBE grew rapidly into truly global organisations, and they established an excellent working relationship. As President of ILAE, I realised in 1995 that the stage was now set for a joint initiative by the League (professional), the Bureau (patients, public), and the WHO (political) to address the universal but historically neglected problem of epilepsy. Together the three organisations represent a potentially powerful partnership. Although concerns were expressed about engaging with the WHO, all three organisations proved receptive to this idea, and the first phase of the campaign to bring epilepsy “out of the shadows” was launched in Geneva on June 19, 1997, and in Dublin at the 22nd Epilepsy International Congress on July 3, 1997. The objectives of the Campaign are as follows: To increase awareness among both health professions and the general public of epilepsy as a universal and treatable brain disorder. To raise epilepsy to a new plane of acceptability in the public domain. To improve education about epilepsy. To identify the needs of people with epilepsy. To encourage governments to address the needs of people with epilepsy. As emphasised by Dr. Gro Harlem Brundtland, Director General of WHO, at the second-phase launch, the first phase was concerned with the first three objectives (i.e., increasing awareness, creating acceptance, and improving education), not least within the three global organisations themselves. More than 1,200 health professionals from >100 countries participated in regional symposia on public health aspects of epilepsy leading to Regional Declarations against Epilepsy in Europe, Africa, Latin America, and Asia–Oceania. More than 50 countries are now developing their own initiatives under the umbrella of the campaign. All these activities have laid the foundations for achieving the last two objectives, commencing with a new 4-year second phase, which includes demonstration projects in at least four developing countries: Argentina, China, Senegal, and Zimbabwe. The global statistics about epilepsy are startling. It is probably the most universal of all medical disorders, with no age, race, social class, or geographic boundaries. The prevalence is remarkably uniform around the world, although the incidence does increase in developing countries with more predisposing cerebral disorders (for example, communicable diseases or perinatal and other forms of brain injury). At least 50 million people in the world today have epilepsy, but this is probably an underestimate, as partial seizures are often not recognised as such in developing countries with limited professional and diagnostic resources. At least 100 million people will have epilepsy at some time in their lives. Although epilepsy is a largely treatable brain disorder and relatively cheap medication is available, it is a remarkable failure of our age that ≤35 million people with the disorder receive no treatment at all, the so-called “treatment gap,” which varies between 60 and 98% in developing countries. Many causes for the treatment gap are discussed by Rajendra Kale, but a major factor is the deeply rooted stigma attached to the disease based on centuries of misunderstanding, fear, and social exclusion referred to by all the contributors to this supplement, who emphasise the need and the ways to bring epilepsy “out of the shadows.” This supplement summarises the proceedings of the second-phase launch together with the associated symposium on global health aspects of epilepsy held in Geneva on the same day. Under the chairmanship of Derek Yach, Executive Director, Non-Communicable Diseases and Mental Health, the launch and overview by Dr. Gro Harlem Brundtland is probably the most important political public health statement about epilepsy in the history of the disease. Hanneke de Boer, the current Chairperson, describes the new dimensions to the Campaign and, as past Chairman, I review the origins and achievements of the first phase. Professor Engel, ILAE President, presents a global medical perspective, and IBE President, Phil Lee, the corresponding global social view. John Bowis, a member of the European Parliament for London, who has been a personal political inspiration and supporter from the beginning of the campaign, through his work as a previous U.K. Health Minister, provides a political view. This is followed by a moving personal account of a patient perspective from the developing world by Carol D'Souza, before the closing remarks by Benedetto Saraceno, Director of the Department of Mental Health and Substance Dependence at WHO. In the public health symposium, Matilde Leonardi gives us some insight into the new measures of the global burden of disease now used by WHO, as a result of which chronic medical diseases such as epilepsy are rising up the WHO agenda. Gus Baker reviews the social burden of epilepsy, which for so long has kept people with epilepsy “in the shadows.” Rajendra Kale enlarges on the scale and causes of the treatment gap, the reduction of which is one of the major objectives of the Campaign. Ley Sander, who has overall responsibility for demonstration projects, describes their principles as models of treatment and care for regional dissemination to improve services. Peter Wolf summarises the concept and the progress of Regional Declarations as an instrument for action in several continents. This has already led to the presentation of a “White Paper” in the European Parliament. Finally, Natalio Fejerman discusses the needs of children and adolescents, by far the largest subgroup of people with epilepsy in the world as a whole. The Global Campaign is designed ultimately to encourage and assist national governments to develop their own initiatives to address the needs of people in their own countries, who may have much in common with people with epilepsy everywhere, but who also will have particular needs associated with the local circumstances, environment, and health care services/resources. By increasing awareness and acceptability in a concerted global manner and by sharing ideas and strategies for addressing general and local challenges, we are laying the foundations for improving the lives of millions of people as we bring the universal disorder of epilepsy “out of the shadows.”