Aga Khan University’s Brain and Mind Institute (BMI) and Newcastle University, in partnership with the Ministry of Health, begin development of a national roadmap to tackle stigma surrounding neurological conditions such as epilepsy, Parkinson’s disease and other neurological disorders.
The policy is expected to improve access to care and support for millions of people living with neurological conditions. With recent studies showing that up to 9% of Kenyan children experience neurodevelopmental disorders, while epilepsy alone accounts for nearly 40% of neurological DALYs in rural populations. The initiative brings together policymakers, researchers, healthcare professionals, advocacy organisations, caregivers and people with lived experience to co-develop a shared roadmap that will guide efforts to reduce stigma around neurological conditions.
This is in line with Kenya’s efforts to implement the World Health Organization’s Intersectoral Global Action Plan (IGAP) on Epilepsy and Other Neurological Disorders, which calls on countries to establish national awareness and advocacy programmes by 2031.
Ministry of Health Director of the Division of Mental Health, Dr Mercy Karanja, said reducing stigma is fundamental to improving brain health in Kenya because fear of judgement often prevents people from accessing the care and support they need.
“The Ministry of Health remains unwavering in its commitment to ensuring that every citizen, including those living with mental, neurological, and substance use (MNS) disorders, receives the quality care they deserve. This is not just a health policy goal; it is a constitutional right under Article 43(1)(a) of our Constitution (2010). The creation of this roadmap encourages multisectoral collaboration, which is our only viable path toward ensuring people living with neurological conditions are understood, supported and able to access the care they need,” she said.
The roadmap builds on findings from the British Academy-funded Canvas for Change project, led by Aga Khan University’s Brain and Mind Institute in collaboration with Newcastle University. The project used participatory theatre, documentary storytelling and community dialogue to understand how stigma affects people living with neurological conditions across Kenya. These findings will help identify priority actions, define stakeholder responsibilities and provide a coordinated approach to improving awareness and inclusion across Kenya.
Neurological conditions are among the leading causes of disability worldwide, yet stigma remains one of the greatest barriers to early diagnosis, treatment and social inclusion. Many people continue to delay seeking care because of discrimination, myths and fear of being ostracised, making stigma reduction a critical public health priority.
Aga Khan University Brain and Mind Institute Director Prof. Merali noted that bringing together researchers, government, healthcare professionals, communities and people with lived experience creates the best opportunity for evidence to influence decisions that improve lives.
“Research should not end in academic journals. Its greatest value is realised when it informs policy and improves people’s lives,” he said.
Since 2024, the Ministry of Health has led a series of national consultations under the World Health Organisation’s Intersectoral Global Action Plan (IGAP) on Epilepsy and Other Neurological Disorders. Rather than starting a new conversation, the Naivasha meeting builds on priorities identified through those consultations. It combines them with fresh evidence from the Canvas for Change project to develop a practical roadmap for implementation.
“The stories we heard showed us that stigma can be as limiting as the condition itself. Seeing those experiences shape national policy is exactly what this project set out to achieve.” Said Aga Khan University Brain and Mind Institute Implementation Scientist and Canvas for Change Principal Investigator Dr Mary Bitta.
Over the course of the meeting, participants are expected to agree on the roadmap’s key priorities and establish the partnerships needed to drive implementation after review of the findings from the Canvas for Change study and having heard from the different stakeholders present.
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