Epilepsy Alliance Africa (EAA)’s pan-African model of epilepsy management, education, awareness, advocacy and capacity building

Abstract

There are an estimated 10 million people with epilepsy in Africa, meaning that 0.9% or 1 per 1000 people live with epilepsy on the continent. Of these, only about 25% (2.5 million) are on medical treatment, giving a treatment gap of 75% (7.5 million). Out of those 2,5 million who are on medical treatment, we estimate that only about 25% (625 000) have access to medicines and 5% (125 000) have access to specialist treatment. The major reason behind the huge treatment gap is the knowledge gap, which stands at about 70%, meaning only about 30% view epilepsy as a neurological disorder that can be managed medically or surgically. The medication gap and specialist access gap are huge because of financial resources required to buy medicines, consult doctors including specialists and transport. The care of people with epilepsy implies not only the correct diagnosis and treatment, but also the management of its main sociocultural consequences such as misconception of the disease, the persistence of stigma and access to resources. Further, it implies effective management of comorbid conditions such as physical, social, psychopathological, psychiatric, behavioral, and emotional disorders and all the problems which have a profound impact on quality of life. It also implies putting in place effective policies at national and continental level and building stronger organizations, again at both national and continental level. and effective policies. For that, the Epilepsy Alliance Africa (EAA) was created in 2019 in order to accelerate awareness and education; coordinate advocacy; and to strengthen the capacity of organizations in Africa. The EAA has pan-African objectives driven by the need to recognise African knowledges and solutions as the basis for a sustainable solution to the problem of epilepsy. In this article, we provide the background of the EAA, describe its ongoing contribution, discuss the challenges and proffer suggestions to make the alliance model more effective. At the end, roles of social, community and development workers are outlined.