Moving from Daji towards Noma: Changing the perception of a spiritual towards a treatable disease : A case study of Hilfsaktion Noma e.V. in Niger

Abstract: Noma is a neglected non-contagious disease of the face and mouth affecting children living in extreme poverty. Due to the quick spread of the disease, the mortality rate is estimated at 90% when treatment is not started within two weeks of onset. Even though Hilfsaktion Noma e.V. (HAN) has been actively spreading awareness about the disease and offering treatment and reconstructive surgery, the mortality rate has not decreased. Moreover, patients reaching the noma centre often present severe sequela, affecting their speech, eating and drinking ability. Therefore, this study investigates the challenges faced by noma patients to seek medical care in Niger and how to overcome them. A mixed-method approach was performed; a survey among healthcare workers of HAN was supplemented with an interview with a key informant of the organisation in order to get a wider understanding of the possible challenges noma patients encounter. Accessibility to healthcare, as well as distance to the hospital and lack of transportation means were identified as the challenges with the highest impact on the health-seeking behaviour of noma patients. The lack of knowledge about noma and treatment costs were the second main challenge. This information gap is reflected in stigmatization, inadequate health care staff and seeking aid from traditional healers, which seriously endangers the life of patients. To overcome these challenges, a community-based surveillance system in combination with a multisectoral approach was proposed. This low-cost system can not only eliminate noma by facilitating the early detection of noma patients, but it can also contribute to sustainable health in Niger and other countries in the Noma belt.