IBE in Africa

There are approximately 10 million people living with epilepsy in Africa where epilepsy is greatly misunderstood, deeply stigmatized, dramatically underfunded and most often ignored by the health care system. Over 75% of people in Africa with epilepsy live in rural and semi-urban areas where treatment is nearly non-existent. Knowing that there are affordable drugs and effective, low-cost programs, it is especially egregious that people with epilepsy in Africa continue to suffer.

In 2015, the World Health Organization (WHO) General Assembly passed a landmark epilepsy resolution known as WHA68.20: Global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications. This resolution is tremendously important in that it calls on all member countries to address epilepsy seriously by developing and implementing national plans of action. Despite this global declaration, none of the countries in Africa has developed an epilepsy national plan. There has been no political response nor has there been any financial investments in programs that could reduce the epilepsy treatment and knowledge gap at the country level. Previous international agreements such as the African Resolution on Epilepsy (2000) were also never adequately implemented, despite research in some countries, such as Zimbabwe and Senegal, showing that the costs of managing epilepsy in resource poor settings were quite minimal.

Many African patient and family-based organizations are now organized and motivated to meaningfully change epilepsy understanding and treatment on the continent. Associations of people with epilepsy, their families, and professionals have a significant role in advocating for a national epilepsy plan to be developed, adopted and implemented. The IBE supports its chapters across the world to work collaboratively with professional and governmental partners to improve epilepsy care at the county level. Unfortunately, the capacity of such chapters in Africa is limited, yet there is a strong desire by these member chapters to build their infrastructure in order to narrow the knowledge and treatment gap.

The overarching goal of two significant initiatives underway in Africa – the Utetezi Project and Promising Strategies Program – is to reduce the epilepsy knowledge and treatment gaps across the region and to provide IBE chapters in Africa with the tools to develop and execute plans and activities to implement the WHO Epilepsy Resolution (WHA68.20) and to build capacity within their membership.

Quick links:

IBE Africa Website
IBE Africa Webinars
Promising Strategies

The Utetezi Project

The Utetezi Pilot Project, funded by the BAND Foundation in 2019, provided funding to five African countries to develop the groundwork to create national epilepsy task forces, the development and implementation of national epilepsy plans, and the introduction of educational initiatives to address the recommendations of WHO Resolution WHA68.20.

The evaluation of the pilot project has provided direction and opportunities which will be harnessed in phase 2, where we will establish a communication plan, website and tool kit to share best practices. Phase 2 offers a small grants program to enable IBE chapters to develop plans at the national level and to work together to develop and disseminate a regional plan of action.

This project is grounded in the core rallying principle of the 2030 Agenda for Sustainable Development – leaving no one behind. During its implementation, and in alignment with the commitment to sustainable development goals of regional governments, effort will be made to identify regional stakeholders to support the project cause. There will be the opportunity also to increase efficiencies and value for money through harmonized operations with the Promising Strategies Program, which are also supported by the BAND Foundation.

In addition, the project seeks to complement the efforts of state and other non-state actors and to empower persons with epilepsy, through capacity building, to influence society at large and policy makers to include epilepsy on national and regional health agendas. Other aspects of the project will be directed at capacity building of regional leadership in the development of well-equipped epilepsy initiatives. Interventions will be focused on both national and regional duty bearers with the aim of awareness raising, information sharing, and empowerment at all levels to break the barriers that hinder access to health services.

In response to the Coronavirus threat, the project will also provide unique, innovative platforms for engagement using online platforms. This initiative recognizes the imperative to collaborate with people with epilepsy if a sustainable intervention is to be achieved. In doing so, we are confident that Epilepsy in Africa will have new face with the vision of contributing to barrier-free health systems.

Objectives

  • To improve the visibility of epilepsy initiatives in Africa
  • To strengthen the technical capacity of regional project management teams
  • To enhance the capacity of epilepsy organizations to influence health policies
  • To strengthen regional engagement and working relationship with WHO AFRO, the African Union (AU), ILAE Africa and the Pan African Parliament (PAP)
READ THE PROJECT BROCHURE
READ THE PHASE 1 EVALUATION REPORT