The Epilepsy Pathway Innovation in Africa (EPInA) project has revealed that between 80 and 90 percent of persons living with epilepsy in Ghana are not receiving appropriate treatment, largely due to stigma in communities.

Professor Patrick Adjei, Project Lead and Principal Investigator of the EPInA project, said stigma, rather than lack of medicines, is the main driver of Ghana’s wide epilepsy treatment gap.

He made the disclosure at the opening of a two-day meeting on the implementation of the Intersectoral Global Action Plan (IGAP) on epilepsy and other neurological disorders in Ghana.

The plan, adopted in 2022 by the World Health Assembly, outlines actions for member states and partners to close the treatment gap for people with neurological disorders and address inequalities, stigma, and discrimination. It also seeks to support quality diagnosis, treatment, management, and care of neurological disorders, while strengthening the public health approach to epilepsy.

Professor Adjei explained that although medicines for epilepsy are available under the National Health Insurance Scheme at primary healthcare facilities, many patients fail to seek care due to fear, discrimination, and social exclusion.

“If people feel they are being looked at differently because of seizures, they may avoid health facilities altogether,” he said.

The World Health Organization’s IGAP indicates that the treatment gap for epilepsy in low- and middle-income countries averages about 70 percent. However, findings from the Ghanaian study suggest the figure could be as high as 90 percent locally.

The study further found that caregivers of persons living with epilepsy experience similar levels of stigma, affecting their social lives and willingness to pursue treatment for affected relatives.

Epilepsy, also known as seizure disorder, is a brain condition that causes recurring seizures. It is diagnosed when a person has had at least two seizures without a clear cause, at least 24 hours apart.

Globally, more than 50 million people live with epilepsy, with the condition particularly prevalent in sub-Saharan Africa. In Ghana, approximately 330,000 people are estimated to live with the condition.

Professor Adjei noted that the study, conducted in collaboration with the Ghana Health Service as part of a public health advocacy drive, found that epilepsy prevalence in Ghana stands at about 10 per 1,000 people, roughly one in every 100 persons.

“That tells you epilepsy is not rare. If you see 10 people, statistically, one may be living with epilepsy. It affects families, caregivers, and entire communities,” he added.

The professor said medical evidence shows that epilepsy is highly treatable. About 60 percent of patients become seizure-free on a single anti-epileptic drug. Of the remaining 40 percent, up to 60 percent can achieve seizure control with two medications. A small percentage may require surgical intervention to remove identifiable brain lesions.

He added that more than 36 anti-epileptic medicines are available globally, with several accessible in Ghana.

Professor Adjei called for intensified public health education campaigns through district health systems under the Ghana Health Service to reduce stigma and improve service utilization.

He urged persons living with epilepsy to seek care at health facilities, appealed to caregivers to support treatment adherence, and encouraged faith-based organisations to educate themselves and promote medical treatment.

“Epilepsy is another chronic medical condition of the brain. Anyone can develop it, even after events like a stroke. But it is treatable and, in some cases, curable,” he emphasised.

Professor Felix Akoma Asante, Provost of the University of Ghana, representing the Vice-Chancellor, called for a multidisciplinary approach to address the challenge.

Thomas Larbie, a caregiver, said caring for someone with epilepsy is not easy but possible, and can be deeply meaningful. He noted that the journey comes with challenges, stress, and moments of exhaustion, but with commitment and the right knowledge, families can live well together and support people with the condition effectively.

He urged caregivers to educate themselves about the condition, learn seizure first aid and recovery procedures, follow medical guidance, be patient, and avoid allowing superstition to take center stage in seeking treatment.

The meeting provided a platform to discuss epilepsy care pathways, challenges, advocacy, and the availability of medicines for neurological disorders in Ghana, in line with the targets of the Intersectoral Global Action Plan.