From the Information Officer

The International Epilepsy Agenda Moves Forward

From its beginning over 100 years ago, the League has been built on the central idea that the problems experienced by those who have epilepsy transcend national boundaries and cultural identities. No matter where they live in the world, people with epilepsy experience poor access to effective treatment, prejudice against them because they have the disease, and social isolation that often limits their education and long-term economic welfare. The economic burdens of the disease are well known.

These problems are as true now as they were 100 years ago. One could conclude that no progress has been made, but comparing then to now tells us otherwise. More people with epilepsy now have their seizures controlled and many in the public eye no longer try to hide their epilepsy. But we know the old issues remain for the majority who suffer from the disease. In the last 20 years there have been radical changes in the epilepsy community's approach to improving care and changing attitudes among the general public. First there was the Global Campaign Against Epilepsy's “Out of the Shadows” program which demonstrated just how many people were not receiving treatment for their epilepsy and how effective treatment radically changed lives for the better. The next major steps were the PanAmerican Health Organization's Strategy and Plan of Action on Epilepsy, the European Written Declaration on Epilepsy and the American Institute of Medicine's report on epilepsy (Epilepsy across the Spectrum: Promoting Health and Understanding). Each highlighted how epilepsy care did not receive the attention or resources that corresponded to the health and economic burden the disease creates, and all called for specific actions. The PanAmerican and European agreements called on governments to improve care, access to care and treatment for the many psychosocial consequences of epilepsy.

These activities have all led to important steps to improving the quality of life for all of those whose lives are affected by epilepsy in many countries. Another major step has been taken. In February, the Executive Board of the World Health Organization approved a Resolution on the Global Burden of Epilepsy. This resolution clearly outlines the significant burdens on health, psychosocial well-being and economic status imposed by epilepsy. It calls on all member nations to make epilepsy a national health care priority and to provide the resources to improve access of care and to ameliorate the affects of stigma. This resolution now moves to the World Health Assembly for approval in May. This resolution came about through the efforts of a number of our colleagues and was led by the Presidents of the ILAE and IBE, Emilio Perucca and Athanasios Covanis. We ask all of our members to contact their national representatives to the Assembly to support this important resolution.

Progress, however, will not come from resolutions alone. They make the issues important, but it will be up to each chapter to lead the efforts in each country, and the conditions vary greatly across the world. In this issue of Epigraph there are articles that highlight some of the key issues in our newest region, Africa, and how a very individualized approach is needed for each country and region. Although the solutions may be country or region specific, the creativity of our members keeps us moving forward.

Ed Bertram, Information officer