La OPS y la Oficina Internacional para la Epilepsia buscan elevar la epilepsia como prioridad de salud en las Américas – OPS/OMS

The organizations published a toolkit to facilitate the development of campaigns that raise awareness, reduce stigma and improve access to care.

Washington, DC, September 6, 2024 (PAHO) – The Pan American Health Organization (PAHO) and the International Bureau for Epilepsy (IBE) launched a tool set Designed to place epilepsy at the center of public health agendas in the Americas, it seeks to help civil society organizations develop advocacy campaigns that contribute to raising awareness, reducing stigma, and improving access to health care.

Epilepsy, a chronic neurological disorder characterized by recurrent seizures, affects approximately 5 million people in the region. However, an estimated 50% of these people do not receive the necessary treatment to lead a normal life. In Latin America and the Caribbean, the mortality rate from epilepsy is significantly higher compared to the United States and Canada. More than half of people with epilepsy in these regions lack access to adequate medical services, resulting in inadequate control of their symptoms.

The new “Advocacy Toolkit for Making Epilepsy a Priority in the Americas” was developed by health experts in collaboration with people with epilepsy and their families. This toolkit offers a variety of resources, including advocacy strategies, practical examples, and templates.

“The resource we are making available can be an important step toward a future in which epilepsy receives the care it deserves, especially in primary care,” said Dr. Renato Oliveira, head of the Mental Health and Substance Use Unit at PAHO. “The implementation of promotional campaigns can reduce stigma and increase awareness, facilitating early diagnosis and adequate access to treatment,” he added.

Although epilepsy is treatable and medications are expensive, access to treatment remains a challenge. In Latin America and the Caribbean, two-thirds of countries do not have a specific program for epilepsy care. Lack of trained personnel, irregular availability of medications, and lack of education and awareness about the disorder contribute to the current situation.

“Multi-stakeholder collaboration will be essential if we are to achieve transformative social change for people with epilepsy in the Americas,” said Dr. Francesca Sofia, President of IBE. “We hope that this practical toolkit will inspire and enable our community to collaboratively shape effective policy advocacy actions that address the real needs of people with epilepsy and those who care for them in this region,” she stressed.

The toolkit aligns with the World Health Organization (WHO)’s global mandates, specifically the Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031. Unanimously adopted by all 194 WHO Member States, the plan sets goals to increase coverage of epilepsy services and update legislation to protect the rights of affected individuals. The new resource supports these goals by providing practical strategies to implement the plan and achieve meaningful change in the region.