The organizations released a toolkit to facilitate the development of campaigns to 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) have launched a toolkit designed to position epilepsy at the center of public health agendas in the Americas. This resource aims to help civil society organizations in developing advocacy campaigns to help raise awareness, reduce stigma, and improve access to care.
Epilepsy, a chronic neurological disorder characterized by recurrent seizures, affects approximately 5 million people in the region. However, it is estimated that 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 poor control of their symptoms.
The new "Advocate’s toolkit for making epilepsy a priority in the Americas" was developed by health experts in collaboration with people with epilepsy and their families. This kit offers a range of resources, including advocacy strategies, practical examples, and templates.
"The resource we are making available can be an important step towards a future where 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. "Implementing advocacy campaigns can reduce stigma and increase awareness, facilitating early diagnosis and adequate access to treatment," he added.
Even though epilepsy is treatable, and medications are affordable, access to treatment remains a challenge. In Latin America and the Caribbean, two-thirds of countries do not have a specific program for the care of epilepsy. The lack of trained personnel, the irregular availability of medications, and the lack of education and awareness about the disorder contribute to the current situation.
"Multi-stakeholder partnership will be essential if we are to achieve a transformational social change for people with epilepsy across The Americas," said Dr. Francesca Sofia, President of the 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 emphasized.
The toolkit aligns with the global mandates of the World Health Organization (WHO), specifically Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders. Adopted unanimously by the 194 WHO Member States, the plan sets targets to increase coverage of services for epilepsy and update legislation to protect the rights of affected people. The new resource supports these objectives by providing practical strategies to implement the plan and achieve significant change in the region.
