Why millions of Africans with epilepsy are left to suffer alone

Millions of epilepsy patients across Africa cannot access treatment due to medicine shortages, few specialists and deep-rooted stigma. [File,Standard]

Roughly 80 per cent of people living with epilepsy across sub-Saharan Africa receive no treatment at all, a figure that an epilepsy advocate says exposes a failure at the heart of global health policy.

Dr. Phyllis Kimani, a pharmacist qualified in both the United Kingdom (UK) and Kenya, raised the alarm as global health ministers convened at the World Health Assembly (WHA) in Geneva, arguing that neurological conditions remain peripheral in discussions that should place brain health at their centre.

"Brain health is health. Neurological care is not a luxury," said Kimani, who focuses her work on refractory epilepsies, cases where patients do not respond to standard treatment.

Epilepsy affects approximately 50 million people globally and ranks among the world's most prevalent neurological disorders. In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need, a phenomenon researchers call the treatment gap.

A recent study found the average availability of generic anti-seizure medicines in the public sector of low- and middle-income countries (LMICs) to be less than 50 per cent.

Sub-Saharan Africa's treatment gap exceeds 75 per cent, driven by limited diagnostic tools, poor medication access, too few trained healthcare workers and stigma that discourages patients from seeking care.

Kimani said the misunderstanding of the condition deepens the crisis. Surveys in Rwanda found that most respondents believed people with epilepsy should not be allowed to go to school, work or use public spaces, while a large study in suburban Senegal found that 51 per cent of respondents believed evil spirits caused epilepsy.

"In some communities, seizures are still associated with witchcraft, curses or mental illness. These misconceptions do more than fuel stigma. They delay diagnosis, isolate families and prevent people from seeking medical care," noted Kimani.

She observed that caregivers of patients with treatment-resistant epilepsy carry financial and mental health burdens that rarely appear in clinical records or policy documents, a population she described as "invisible" within the broader healthcare conversation.

Kimani called for stronger supply-chain accountability, noting that many anti-seizure medicines listed on the World Health Organisation (WHO) Essential Medicines List remain unavailable at the facility level across sub-Saharan Africa.

She also called for earlier diagnosis pathways, epilepsy education in schools and communities and investment in specialist services within African health systems.

WHO pilot projects have indicated that training primary healthcare providers to diagnose and treat epilepsy can effectively reduce the treatment gap, suggesting the barrier is political will and resources rather than technical capacity.

"No one should be left behind simply because of where they live, what they can afford or how complex their condition may be. That is not an aspiration. It is a standard of care we have the knowledge and the means to meet," added Kimani.