Up to two million Kenyans are living with epilepsy, yet 80 percent of them receive no treatment. New findings from the Epilepsy Pathway Innovation in Africa project, a collaboration between the WHO, Kenya’s Ministry of Health, the KEMRI-Wellcome Trust Research Programme, and international partners including the University of Oxford, show the burden is even wider than previously understood because most cases never present with the visible seizures that health systems have traditionally been trained to detect.
Simon Kariuki, principal investigator of the EPInA study and a researcher at the African Population and Health Research Center, said the diagnostic picture has been systematically distorted. "Previously, we only used to capture certain types of epilepsy that are very visible to the human eye, especially the generalised tonic clonic, where someone shakes and becomes a bit tight and falls to the ground," Kariuki said. A large proportion of patients experiencing non-convulsive seizures have never been identified, counted, or treated.
The project, which has been operating across Kenya, Tanzania, and Ghana since 2019 with NIHR funding, is working to close that gap through app-based diagnostic tools, portable electroencephalogram technology for rural settings, healthcare worker training, and community education. It is currently expanding into high-risk regions where malaria and HIV significantly raise the probability of neurological complications. Kariuki said targeted prevention work could reduce the total burden by around 30 percent. "When we implement these strategies, we will have prevented 30 per cent of the burden, and then we will start thinking of other complex issues that need specialised attention," he said.
The treatment gap is not primarily a drug shortage problem. Effective first-line medicines including phenobarbital, phenytoin, carbamazepine, and sodium valproate are available in Kenya’s public health system and cost as little as $39 (5,000 shillings) for a full year of treatment per patient. The barriers are stigma, misdiagnosis, and a health system that has not been configured to find the patients it cannot see. In communities where epilepsy is still associated with possession or spiritual causes, families delay or avoid care entirely. "When people understand that epilepsy has a biological cause and that treatment can stop seizures, attitudes begin to change," Kariuki said.
Kenya is now aligning its national response with the WHO Intersectoral Global Action Plan on epilepsy and neurological disorders. Elijah Songok, Director General of the Kenya Medical Research Institute, said the EPInA findings create the evidence base needed for policy reform. "The EPInA evidence provides an essential foundation for strengthening epilepsy care in Kenya," Songok said.
Bigger Picture: Two million people living with a manageable neurological condition, 80 percent of them untreated, at a cost of under $40 per patient per year for effective medication. Kenya’s epilepsy gap is not primarily a resource problem. It is a detection, stigma, and system design problem. The EPInA project’s value is not just in the research it has generated but in the diagnostic tools and community frameworks it is leaving behind. If healthcare workers can identify non-convulsive epilepsy, and communities understand it is a medical condition, the treatment rate can move. The question is whether Kenya’s health system will absorb and act on the evidence now sitting in front of it.
Source: Capital FM Kenya
