The Epilepsy Pathway Innovation in Africa (EPInA) project has revealed that between 80 and 90 per cent 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, was the main driver of Ghana’s wide epilepsy treatment gap.
He disclosed this 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, and strengthen the public health approach to epilepsy.
Prof. Adjei explained that although medicines for epilepsy were available under the National Health Insurance Scheme at primary healthcare facilities, many patients failed 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 Intersectoral Global Action Plan (IGAP) indicates that the treatment gap for epilepsy in low- and middle-income countries averages about 70 per cent.
However, findings from the Ghanaian study suggest that the figure could be as high as 90 per cent locally.
The study further established that caregivers of persons living with epilepsy faced 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, and the condition is particularly prevalent in sub-Saharan Africa.
In Ghana, about 330,000 people are estimated to be living with the condition.
Prof. 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 approximately 10 per 1,000 people, translating into about one in every 100 persons.
“That tells you epilepsy is not rare. If you see 10 people, statistically one in 100 may be living with epilepsy. It affects families, caregivers, and entire communities,” he added.
Prof. Adjei said medical evidence cited in the study showed that epilepsy was highly treatable.
He said about 60 per cent of patients became seizure-free on one anti-epileptic drug.
Of the remaining 40 per cent, up to 60 per cent could achieve seizure control with two medications.
He said a small percentage might require surgical intervention to remove identifiable brain lesions, adding that more than 36 anti-epileptic medicines were available globally, with several accessible in Ghana.
Prof. Adjei called for intensified public health education campaigns through district health systems under the Ghana Health Service to reduce stigma and improve service utilisation.
He urged persons living with epilepsy to seek care at health facilities and appealed to caregivers to support treatment adherence, while encouraging 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.
Mr Thomas Larbie, a caregiver, said caring for someone with epilepsy was not easy but possible, and could be deeply meaningful.
He said the journey came with challenges, stress and moments of exhaustion, but with commitment and the right knowledge, families could live well together and support people with the condition effectively.
Mr Larbie urged carers 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.