Authors :
Presenting Author: Keryma Acevedo, MD – Chilean League against Epilepsy - Catholic University of Chile
Sebastian Winter, MD, PhD – International Bureau for Epilepsy, Berlin, Germany; Liga Chilena contra la Epilepsia, Santiago, Chile; Pontificia Universidad Católica de Chile, Santiago, Chile; Carlos Acevedo, MD – PAHO/WHO Collaborating Centre for Education and Service Development for People with Epilepsy, Santiago, Chile; Liga Chilena contra la Epilepsia, Santiago, Chile; Tomás Mesa, MD – International Bureau for Epilepsy (IBE), Washington, D.C., USA; PAHO/WHO Collaborating Centre for Education and Service Development for People with Epilepsy, Santiago, Chile; Liga Chilena contra la Epilepsia, Santiago, Chile; Pontificia Universidad Católica de Chile, Santiago, Chile; Jorge Förster, MD – PAHO/WHO Collaborating Centre for Education and Service Development for People with Epilepsy, Santiago, Chile; Pontificia Universidad Católica de Chile, Santiago, Chile; Hospital Dr. Sótero del Río, Santiago, Chile; Alejandro De Marinis, MD – PAHO/WHO Collaborating Centre for Education and Service Development for People with Epilepsy, Santiago, Chile; Liga Chilena contra la Epilepsia, Santiago, Chile; Clínica Universidad de los Andes, Santiago, Chile; Reinaldo Uribe, MD – PAHO/WHO Collaborating Centre for Education and Service Development for People with Epilepsy, Santiago, Chile; Liga Chilena contra la Epilepsia, Santiago, Chile; Pontificia Universidad Católica de Chile, Santiago, Chile; Departamento de Enfermedades No Transmisibles, Ministerio de Salud, Santiago, Chile; Mario Alonso-Vanegas, MD – ILAE-Latin America, International League Against Epilepsy (ILAE), Flower Mound, TX, USA; Matías Irarrázaval, MD, MPH – Department of Mental Health and Substance Use, Pan American Health Organization/World Health Organization, Washington, D.C., USA; Valentina Kahn, MSc – IBE Global Youth Team, International Bureau for Epilepsy (IBE), Washington, D.C., USA; Gloria Quiero, MA – IBE Community Council, International Bureau for Epilepsy (IBE), Washington, D.C., USA; Donna Walsh, BA – International Bureau for Epilepsy (IBE), Washington, D.C., USA; Francesca Sofia, PhD – International Bureau for Epilepsy (IBE), Washington, D.C., USA; Gus Baker, PhD – International Bureau for Epilepsy (IBE), Washington, D.C., USA
Rationale:
Five million people with epilepsy (PWE) live in the Americas. Disparities are substantial: Epilepsy mortality in Latin America/Caribbean (LAC) is double that of the US/Canada. The Pan American Health Organization (PAHO) Action Plan on Epilepsy has yielded advancements towards national programs and appropriate legislation for epilepsy but barriers remain. Advocacy is a powerful lever to translate epilepsy needs into political action. In LAC, advocacy efforts remain fragmented despite the criticality of partnerships for concerted action. The UN SDGs 2015-30 and WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-31 (IGAP) are globally ratified, epilepsy-relevant frameworks. Despite reflecting core needs of PWE, SDGs (beyond health) are seldom included in epilepsy advocacy initiatives. IGAP contains an epilepsy-specific mandate but successful national rollout requires robust policy advocacy aimed at domestication (context/country-specific policies) and intersectoral alignment (epilepsy-in-all-policies) of the plan. The International Bureau of Epilepsy (IBE) and Chilean League against Epilepsy PAHO/WHO Collaborating Centre convened a multi-stakeholder workshop to discuss country-level opportunities for IGAP/SDG directed epilepsy advocacy in Chile.Methods:
An IBE-led workshop was held in Santiago, Chile, on 19 April 2023 (Figure 1). Participants (n=21) included PWE, carers, families, advocates, health professionals, representatives of IBE, WHO Collaborating Centre, International League Against Epilepsy, PAHO, and Chilean Health Ministry (MoH). In working groups (n=3) participants discussed 1) the status quo, 2) foreseeable impacts, 3) key challenges, 4) necessary measures, and 5) existing advocacy initiatives related to IGAP objectives 1 (“raise policy prioritization/governance”) and 5 (“strengthen the public health approach to epilepsy”) in Chile. An analogous exercise was conducted for selected SDGs (1-2-3-4-5-6-8-10-16). Written and oral results were analyzed.Results:
Chile’s National Epilepsy Plan has improved epilepsy care, yet needs more focus on integrated services for PWE, IGAP alignment, and multi-level education. Structures for IGAP/SDG directed multi-stakeholder advocacy exist, but require effective coordination. Advocacy should promote service coverage (mental/social care, antiseizure medicines, epilepsy surgery), primary care training (technical, stigma, social aspects, carer support). Existing community awareness initiatives need scaling, particularly in rural/remote areas. Coordinated by the Chilean MoH, updated intersectoral policies must reflect socio-economic epilepsy determinants, including SDGs on education, gender equity, and poverty reduction. Meaningful involvement of PWE, families and carers, in advocacy and policy design is paramount for an integrated, person-centred, needs-based epilepsy response.
Conclusions:
IGAP/SDG directed advocacy can advance epilepsy directives at national level but requires stakeholder alignment and concerted action on shared priorities. Despite varying country-specific conditions, replicating this workshop format as a blueprint across countries could enhance epilepsy advocacy and care in LAC.Funding: