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Development of a policy to stop the suffering caused by Nodding Syndrome and Onchocerciasis associated epilepsy

Periodic Reporting for period 1 - NSstop (Development of a policy to stop the suffering caused by Nodding Syndrome andOnchocerciasis associated epilepsy)

Reporting period: 2017-09-01 to 2019-02-28

NSstop developed a comprehensive policy plan to prevent and treat epilepsy in onchocerciasis-endemic regions. This plan includes following components
1) Strengthening Community Directed ivermectin (IVM) treatment (CDTI) programs. Currently in many oncho endemic regions IVM is only distributed once a year. In order to stop children to develop epilepsy the NSETHIO project has shown that biannual distribution of IVM is more efficient.
2) An established epilepsy surveillance system using epilepsy trained community-directed distributors (CDD) of IVM as data collectors. When a person with epilepsy is detected in a village, the CDD will send an SMS message to a local health care worker (HCW) trained to diagnose epilepsy, using an open source mobile data collection platform. This system will be used for planning health needs including to order an annual supply of IVM and anti-epileptic drugs (AEDs).
3) Evidence based OAE guidelines to diagnose and treat epilepsy in onchocerciasis-endemic regions. NSETHIO has developed a clinical case definition of OAE and an OAE diagnostic and treatment algorithm that includes the use of a simple, rapid point of care test to detect IgG4 antibody to Ov16 (an antigen of the Onchocerca volvulus). If the criteria of OAE are met, the person will be treated for onchocerciasis and receive AEDs. Guidelines using simplified low-cost and child appropriate AED regimens have been developed.
4) A community-based care system to diagnose treat and monitor treatment adherence. This requires task-shifting of the management of OAE from medical doctors/neurologists to primary Health Care Workers and community directed distributors of ivermectin. Different training manuals have been developed for specific tasks to be performed by the different cadres of health providers. A training program for school teachers on how to work with children with OAE and a program to prevent and treat burns in children with OAE was also elaborated.
5) A community-awareness program to combat epilepsy-associated stigma and discrimination to increase coverage of IVM. This will be done through health education and a community mobilization program involving persons who suffered from epilepsy in the past but who now are living normal lives thanks to AED and onchocerciasis treatment.