MAKING EPILEPSY A HEALTH PRIORITY IN AFRICA – PHASE II SUMMARY AND RENEWAL REQUEST PHASE III
The International Bureau for Epilepsy [IBE] has 135 chapters in 104 countries. These chapters are comprised of national epilepsy associations whose focus is to improve the social condition and quality of life of people with epilepsy and those who care for them. IBE helps these national organizations to achieve greater impact by developing and implementing programs; providing tools to enhance organizational effectiveness; and by investing in people with epilepsy allowing them to fulfil their full potential as community leaders and key drivers of systemic change.
IBE Chapters are grouped within seven regional structures following the WHO regional boundaries: Africa, Eastern Mediterranean, Europe, Latin America, North America, South East Asia and Western Pacific. IBE Africa Region consists of 24 chapters in 22 countries. This network is the voice of 10 million people with epilepsy in Africa. Over 75% of people in Africa with epilepsy live in rural and semi-urban areas where treatment is nearly non-existent and epilepsy is stigmatized, underfunded and ignored by the health care system.
KEY OBJECTIVES AND RATIONALE PHASE III 2022
We have learned in phase I and phase II that implementation of policies and plans for epilepsy requires strong leadership and inter-sectoral collaboration. The grassroots epilepsy movement that has been mobilized and strengthened through the partnership with the BAND Foundation has yielded so many positive outcomes but there is still work that needs to be done to ensure that policy makers, the WHO, and elected officials prioritize epilepsy as a public health priority in their 2022+ budgets and work plans.
In many countries, laws impacting the lives of people with epilepsy are outdated and fail to protect and promote their human rights. Legislation for epilepsy, where it exists, sometimes actively violate the rights of people with epilepsy. This leads to unmet needs in the areas of education, employment, residential and community services, and access to appropriate and affordable health care. Left untreated, people with epilepsy face devastating consequences.
In phase III, IBE Africa will continue to provide infrastructure support to IBE chapters and skills training to people with epilepsy. We will prioritize three key areas that we believe will narrow the epilepsy knowledge gaps and improve the social condition of people with epilepsy in Africa.
Read Phase II Summary and Rational for Phase III (2022 – 23)