We continue our Global Campaign efforts together with IBE and WHO. Because several additional initiatives do not fall under the collaborative efforts of the Global Campaign, together with IBE we created the Global Outreach Task Force, chaired by Helen Cross and Shichuo Li with expert assistance from Hanneke De Boer. Its primary aim is raising awareness of global educational and service initiatives in epilepsy throughout the world. The Task Force has identified a new slogan, initially proposed by Mike Glynn, President of IBE: Stand up for epilepsy. The slogan is in the process of being registered.
The second SUDEP, A Global Conversation book was launched in Rome six years after the first edition with forewords by the ILAE and IBE Presidents. Much has changed since the earlier edition was launched at the Paris IEC and almost all of it for the better in relation to epilepsy deaths. However, much remains to be done especially in the area of prevention and in regard to people at risk of SUDEP being warned of it together with their loved ones. This book brings together contributions on the subject of SUDEP from all around the world including pieces from many developing countries.
The IOM report will specifically address the following questions: How can the public health burden of epilepsy for patients and families be more accurately assessed? What priorities for future population health studies could inform treatment and prevention? How can the access to health and human services and the quality of care for people with epilepsy be improved? How can the education and training of professionals who work with people with epilepsy be improved? How can the understanding of epilepsy in patients and the general public be improved to create supportive communities? The report will be released in 2012.
The 51st Directing Counseling of the Pan American Health Organization (PAHO; which includes representatives from countries of North, Central and South America), approved and endorsed the Action Plan on Epilepsy for the Americas on September 29, 2011. The Action Plan was prepared by Dr. Jorge Rodriquez from PAHO and Drs. Carlos Acevedo and Marco Medina as part of the Global Taskforce of the ILAE and IBE. The Action Plan highlights the problems associated with epilepsy care throughout the developed and developing countries of the Americas and lists specific goals and anticipated deliverables that would positively impact epilepsy care in the region, with a 10 year focus on epilepsy.
In Europe, efforts are ongoing to advocate for political actions in the fight against epilepsy. The executive body of the European Union (EU) is its Commission. The two key Commissioners who can influence healthcare and research in epilepsy are European Commissioner John Dalli, Commissioner for Health and Consumer Policy and European Commissioner Máire Geoghegan-Quinn, Commissioner for Research, Innovation and Science. During European Epilepsy Day, both Commissioners held meetings with delegations from IBE and ILAE led by the two Presidents at the European Parliament in Strasbourg. A Joint Task Force of ILAE and IBE, co-chaired by Emilio Perucca and Mike Glynn and including members of the ILAE and IBE regional governing bodies (CAE and EREC respectively), has also been established under the name Epilepsy Advocacy Europe (EAE). EAE aims at making epilepsy care and research a priority in the agenda of the European Union (EU) and national governments in the European region. Its first action was to obtain the endorsement of the Written Declaration of Epilepsy by the European Parliament. This was achieved with a majority vote of the European Parliament on September 15, 2011. The Declaration calls for the EU to support research and innovation in the prevention and early diagnosis and treatment of epilepsy; to prioritize epilepsy as a major disease that imposes a significant burden of illness across Europe; to encourage Member States to ensure equal quality of life, including education, employment, transport and public healthcare, for people with epilepsy; to encourage effective epilepsy health impact assessments on all major EU and national policies; and to introduce appropriate legislation to protect the rights of all people with epilepsy. The next steps will be to capitalize on the Declaration by ensuring that its recommendations are adopted by the European Commission and by national governments. A European Conference on Epilepsy is being planned with participation of all major stakeholders from the European Commission, the European Council, national governments, funding organizations, lay organizations and the medical and research community.
Our collaborative efforts are beginning to bear fruit. In November, 2010, the Colombian Congress passed a law establishing special measures of protection for people with epilepsy with principles and guidelines that call for comprehensive care of people with epilepsy.
Five additional Task Forces have been established: The Seizures and Epilepsy in the Tropics Task Force (chair P. M. Preux), working in close collaboration with the Global Outreach Task Force, aims at addressing issues pertaining to seizures and epilepsy in the tropics, in particular as they relate to etiology, socio-cultural aspects and management. The Stigma Task Force (N. Jetté, chair) with support from the North American Commission, aims at determining ways to combat epilepsy-related stigma and its consequences worldwide. The Task Force on Sports and Epilepsy (G. Capovilla, chair), has two main aims: 1) to seek out and foster opportunities for interactions with major sports authorities and organizations to increase awareness about epilepsy worldwide; 2) to increase participation of people with epilepsy in sports activities according to their capabilities. The Task Force on Pre-clinical Drug Discovery (M. Simonato and T. O’Brien, chairs) intends to develop standardized definitions, pathways, techniques and endpoints for the discovery and pre-clinical development of new epilepsy treatments, and to enable a stronger evidence base to identify optimal candidates to take forward to clinical development. The Task Force on ILAE Reports (E. Bertram, chair), will develop guiding principles for writing reports generated by the ILAE, standardize processes for their internal and external review, and develop criteria for their designation as official position statements of the League.
The Taskforce on Sports and Epilepsy is launching an exciting project to create a collection of photographs of famous sports persons meeting people with epilepsy. The photographs will convey the message that people with epilepsy, like athletes themselves, can be inspired to achieve their goals and lead full and active lives. The collection is intended for publication as a book of photographs, and the images will be made available to National Chapters for advocacy initiatives in their own countries.
The ILAE’s strategic planincludes a role as the global leader in epilepsy education. To this end, under the leadership of Ed Bertram, the League developed a series of short, patient-oriented videos dealing with common issues faced by patients (what is epilepsy?, symptoms, diagnosis, treatment, surgery, pregnancy, stigma, where to find treatment, causes and prevention). Although most of the 3-minute videos were designed for web use, two shorter videos with a clear concise message will be used for public news broadcasts (pregnancy and living with epilepsy).
The League has undertaken a campaign to draw attention to the successes of members of our constituency and the importance of epilepsy. Letters have been written to appropriate authorities (deans, regional and national health ministers) about important contributions made by our colleagues (awards, organization of successful events, publication of important documents, elections to leadership positions, celebrations). Authorities will receive the message that epilepsy-related work provides much positive publicity for their institution or country and that epilepsy is an important health problem. We encourage further interaction with the national chapters in these initiatives. As with any such effort, the results can be slow in appearing and require regular reinforcement, but feedback from some members have suggested that these efforts have resulted in first contacts with health ministers as well as positive responses from deans.
During the 29th International Epilepsy Congress in Rome, the General Assembly ratified seven new National Chapters (Bolivia, Cameroon, El Salvador, Kosovo, Kuwait, Nigeria, and Sri Lanka), for a total of 108 active chapters. In addition, applications from 14 countries are being processed. The League’s secretariat is revising the rules for chapter incorporation to increase participation. Regional commissions are exploring ways in which isolated clinicians can easily interact with the League in countries and territories where formation of an ILAE Chapter is unfeasible.