Epilepsy: A public health priority

Image of invitation to the WHA side event

For more than 20 years the WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) have joined forces to address the needs of people with epilepsy, promote epilepsy care and research worldwide, reduce the treatment gap and fight stigma. The landmark World Health Assembly (WHA) resolution on the global burden of epilepsy, unanimously approved in 2015, provides strong support to the cause of epilepsy. The resolution urges the WHO Member States to take coordinated action to address the health, social and public knowledge implications of the disease. It also requests that the WHO provide technical support to Member States for epilepsy management, especially in countries with the least access to services and resources, where the burden of epilepsy is greatest.

However, the implementation of this landmark resolution is still incomplete. Major gaps in awareness, diagnosis and treatment are devastating the lives of millions of people with epilepsy throughout the world. Persons with epilepsy are stigmatized in all societies, with the consequences of prejudice and discrimination adding to the medical burden of the disease.

Following the 2015 Resolution, unprecedented strategic collaborative efforts in epilepsy have emerged. Communication increased among Member States, especially the Russian Federation and China, as well as strong support from many Member States and professional organizations, especially the World Federation of Neurology (WFN).

We express our deepest gratitude for the support received from the healthcare authorities of the Member States, our collaborators in the WHO, the leadership of the WFN and the European Academy of Neurology (EAN), and our colleagues and friends from the ILAE and IBE Chapters. Three significant achievements of the epilepsy community deserve highlighting.

The first official epilepsy Side Event at the 72nd World Health Assembly (flyer)

The Side Events held annually alongside the WHA are tremendously important because the provide a unique opportunity to highlight specific healthcare domains before WHO Leadership and top level healthcare authorities from all over the world. The number of slots for these Side Events is limited and they are highly sought after. Only 18 proposals were selected out of more than 50 applications.

The Russian Federation played a leading role by approaching the WHO secretariat with the proposal for the Side Event “Epilepsy :A public Health Priority”; the proposal was ultimately co-sponsored by China, Croatia, Kazakhstan and Zambia, in conjunction with the ILAE, and IBE and WFN. This strong support from Member States of different world regions and Non-State Actors (ILAE, IBE, WFN), led to the approval of the proposal for the Epilepsy Side event, and will take place alongside the 72nd WHA, on May 22, 2019, in Geneva.

There has been great enthusiasm for the Side Event, with extensive mobilization of ILAE and IBE, and their national chapters and associations. Co-sponsoring has been declared by Colombia, Honduras, Mexico and Tunisia. The leading Healthcare authorities from several other regions officially confirmed their participation in the Side event, Including the Secretary of Health of the Philippines.

This Side event will bring together policy makers, NGOs, patients, health care leaders and Member States to develop next steps for implementing Resolution WHA68.20. Ministries of Health from different WHO regions will identify the underlying systemic issues that affect access to universal health care (UHC) and essential medicines for persons with epilepsy in their regions. The newly crafted Global Epilepsy report will be presented, and key directions for an Epilepsy Action Plan will be identified. The speakers will address the barriers to epilepsy care, make recommendations to strengthen systems and practices, and issue a call for urgent action by all key stakeholders nationally and internationally.

Objectives of the Side event “Epilepsy: A public health priority”:

  • To review the scope and magnitude of the burden of epilepsy globally and to identify the underlying systemic issues affecting access to UHC and essential medicines.
  • To pre-launch the Global Epilepsy report and to discuss the key strategies for strengthening leadership and governance in epilepsy, facilitating a comprehensive health care response, eradicating stigma, and enhancing prevention and research in epilepsy.
  • To learn from the experiences of Member States who have implemented demonstration projects to improve epilepsy care and access to anti-seizure medicines.
  • To strengthen Member State commitment to develop a plan of action to address epilepsy as a public health priority.

Expected Results of the Side Event:

  • A scaling up of Member States’ political commitment towards addressing the gaps in access to essential health-care services and essential medicines for epilepsy.
  • Identification of factors affecting access to essential medicines, where regulations represent a barrier to their availability, as occurs in many resource-limited countries.
  • Development of partnerships and initiatives to address the major modifiable risk factors for epilepsy, including perinatal injuries, central nervous system infections, traumatic brain injury and stroke.
  • Presentation of the summary of the Global Epilepsy Report and identification of key directions for the Global Action Plan on epilepsy

Creation of the first Global Report on Epilepsy

The creation of the first Global Report on epilepsy is a milestone for translating the WHA resolution into action. The key elements of the Report will be presented at the Epilepsy Side Event, while the launch of the report will take place during the International Epilepsy Congress in Bangkok in June 2019. The Global Report is a substantial document developed jointly by the WHO, ILAE and IBE, with participation of more than 50 leading ILAE and IBE experts representing all regions of the world. The objective of the report is to prioritize epilepsy on the global agenda; to describe a public health approach commensurate with its high burden; and to advocate for specific actions to address gaps in epilepsy knowledge, care and research. The intended audience of the report includes policy-makers, public health experts, health care providers, and also people living with epilepsy, their families and civil society organizations.

This evidence- and experience-based report provides a strong foundation confirming that epilepsy is a serious public health imperative and provides suggestions on how to move from information to a call for action. Examples of barriers to epilepsy care, well-being and research are provided along with successful initiatives that have already been implemented in various regions of the world. With the growing number of individuals affected by epilepsy globally, particularly as the population ages, there is an urgent need to implement policies, legislation and interventions to address this very disabling condition that can affect anyone around the globe.

Next Steps: The Action Plan on Epilepsy

As stated in the Global Epilepsy Report, it is time to highlight epilepsy as a public health priority, support investment to reduce its burden, and advocate for crucial actions that address gaps in epilepsy knowledge, care and research. What is needed now is the strengthening of leadership and governance to make financial, human, and other resources available to implement evidence-based plans and actions. National plans should integrate primary and specialist care and be adapted to local health and social care systems. Antiseizure medicines must be widely accessible, appropriately administered, sustained and affordable. There is a need to increase capacity, funding and training for epilepsy research globally. Capacity building, standardization of research process, enhancement of research translation and stakeholder collaboration should be prioritised. Public awareness initiatives are needed to improve the inclusion of people with epilepsy in their communities and to reduce stigma.

People with epilepsy often encounter barriers in achieving their full potential due to unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate and affordable health care. It is imperative to make epilepsy a public health priority and and to take action to address the global burden of epilepsy. Existing barriers in awareness, diagnosis and treatment, which devastate the lives of millions of people with epilepsy throughout the world, should be addressed readily through a cost-effective, coordinated action plan. People with epilepsy and their families are asking that this unique opportunity not be lost.

In January 2019, during the 144th Session of the WHO Executive Board, an initiative of the Russian Federation, supported by Chile, China, Indonesia and Jamaica let to the inclusion into the Agenda of the 146 WHA in January, 2020, of the item “Further actions to address the global burden of epilepsy and its health and social implications at the country level”. The agenda item calls for discussion on two key aspects:

  • develop a “Global action plan for epilepsy”
  • prepare a new report on the implementation of the WHA Resolution 68.20, to be discussed at the 74th WHA in 2021

We have great hopes and expectations from these discussions, and from the activities described above. It is time to make Epilepsy a Public Health Priority.

Professor Sam Wiebe,
President, International League against Epilepsy

Professor Alla Guekht,
Vice-President, International League against Epilepsy