Representatives from the International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), alongside prominent members of the Global epilepsy community, are meeting this week to encourage World Health Assembly (WHA) members and the World Health Organization (WHO) to continue to recognize epilepsy as a global health priority in countries around the world.
Coinciding with the 71st World Health Assembly, advocates will focus on progressing the milestone 2015 WHO Resolution on epilepsy to encourage countries to prioritize epilepsy at national levels, including promoting awareness, eliminating stigma of the disease, expanding research capacity, improving monitoring and surveillance, and expanding access to care.
One of the particular areas of focus will be how to better develop and shape public health policy to better support people living with epilepsy achieve a better quality of life.
Epilepsy is the most common serious disease of the brain, affecting 65 million people around the world. In developing countries, 60% to 90% of people with epilepsy receive no treatment due to inadequacies in healthcare resources and delivery and due to social stigma.
“This World Health Assembly can be a turning point for the epilepsy community. Our organizations are fully committed to seeking international support to the 2015 Resolution on epilepsy” said Martin Brodie and Samuel Wiebe, respectively IBE President and ILAE President, in a joint statement. “We hope that this renewed momentum will inspire the creation of a broad-ranging coalition carrying on further innovative programs and activities consistent with the objectives of the Resolution” they added.
Supporting these efforts, ILAE and IBE have convened a distinguished expert panel to highlight recent progress and global achievements made to improve awareness and management of epilepsy by WHA countries, and to identify some of the outstanding challenges which unfortunately still remain. These include significant gaps and disparities in epilepsy management, awareness and access to effective treatment around the world, which contribute to inequality and stigma.
“As Global leaders in epilepsy, UCB is proud to support the ILAE and the IBE in their continued efforts to improve the lives of people with epilepsy throughout the world” explained Bruce Lavin, Head of Neurology External Engagement and Policy at UCB. “We share a joint commitment to provide additional value to people living with epilepsy around the world. Whether by improving epilepsy care by creating tools, engaging with stakeholders to raise awareness about the complex spectrum of epilepsy, or facilitating the exchange of information and developing standards and guidelines which support people at each stage of their epilepsy journey”.
In convening this meeting, the group hopes to inspire the creation of a broader public-private coalition and develop an action plan for further innovative programs and activities consistent with the objectives of the WHO Resolution.
The ILAE and IBE have a long standing formal collaboration with the WHO, which was renewed by the WHO’s Executive Board at the their 140th Annual session in 2017. This collaboration provides a continued platform to help ensure epilepsy is recognized as a health priority worldwide, and that the human and civil rights of people with epilepsy are enhanced and protected wherever they might live.
Epilepsy is a disease of the brain affecting approximately 65 million people worldwide. It is defined as either the occurrence of two or more unprovoked seizures >24 hours apart or one unprovoked (or reflex) seizure and a probability of further seizures occurring over the next 10 years that is similar to the general recurrence risk (at least 60%) after two unprovoked seizures or diagnosis of an epilepsy syndrome. Although epilepsy may be linked to factors such as health conditions, race and age, it can develop in anyone at any age, and approximately 1 in 26 people will develop epilepsy in their lifetime.
http://www.who.int/mental_health/management/neurological/en/ date accessed 18 May 2018
https://www.epilepsy.com/learn/about-epilepsy-basics/who-gets-epilepsy date accessed 18 May 2018
ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014 Apr;55(4):475-82. doi: 10.1111/epi.12550. Epub 2014 Apr 14. (https://www.ncbi.nlm.nih.gov/pubmed/24730690) date accessed 18 May 2018