Epilepsy treatment gap and stigma reduction in Pakistan: A tested public awareness model

Abstract

High epilepsy treatment gap (ETG) and stigma remain a major issue globally. Addressing the basic problems is necessary, for advances in management to be effective. According to the 1987 population-based study, prevalence of active epilepsy in Pakistan is 0.98% with 98.1% ETG in rural and 72.5% in urban population and the presence of stigma. These dismal figures were a stimulus for our reported activities. Recognizing the problems faced by 2.2 million people with epilepsy (PWE) in the country, a group of volunteers mostly from the medical community has attempted to address these issues with an ongoing sustained awareness program over the last 18 years, working within the constraints of prevailing healthcare system, with gratifying results. In 2001, under a nongovernmental organization (NGO), the Comprehensive Epilepsy Control Programme of Pakistan (CECP) was launched to address the various paucities in knowledge, attitude, and practice about epilepsy; especially ETG and stigma. The CECP has two primary components: Epilepsy Support Pakistan (CECP-ESP) for awareness and mass education and National Epilepsy Centre (CECP-NEC) for holistic management of PWE, professional education, and research. Both work in tandem, and there is an overlap of their activities. This article only evaluates the outcome of sustained awareness activities of the CECP-ESP, through direct and indirect measures after 5 years of its initiation. A significant reduction in ETG and stigma exclusively through public awareness has been possible. This model can be easily replicated by any country, with involvement of the local population.