Noma is an orofacial gangrene affecting primarily children living in extreme poverty in remote parts of subtropical and tropical countries. Mortality and disability are high, and survivors often have physical and functional deformities resulting in stigma and isolation. Many healthcare professionals and primary healthcare workers where noma risk factors exist have no knowledge about noma and its implications. Public health measures to improve nutrition, immunizations, sanitation, and access to healthcare and measures to eliminate extreme poverty can lead to the eradication of noma. Research allocation has been insufficient to study the epidemiology, treatment, and prevention of noma. In a recent editorial by Hotez and colleagues in PLOS Neglected Tropical Diseases (NTDs), “What constitutes an NTD?” Noma is not included. The exclusion of noma from NTDs constitutes this preventable childhood disease as a neglected neglected disease. The purpose of this article is the inclusion of noma with the PLOS NTDs. Increased awareness and attention to noma can lead to the eradication of this disease affecting the world’s most vulnerable.

The scientific literature on noma (Cancrum Oris) has clearly increased in recent decades, but there seems to have been limited analysis of issues around the psycho-social impacts of this disease. Even when these issues have been addressed, the focus has tended to be on patient experiences, whereas the community dimension of the disease and the role of healthcare professionals and community leaders in mitigating these impacts remain largely unexplored. A study in the form of semi-directed interviews with 20 noma survivors and 10 healthcare professionals and community leaders was conducted between January and March 2021 in Burkina Faso with the aim of describing the experiences of noma survivors, generating knowledge about living with the burden of the disease and understanding the attitudes of community leaders towards the disease. The results reveal that noma is a disease that affects economically vulnerable populations and leads to extreme household poverty. As far as treatment is concerned, patients tend to turn to practitioners of both traditional and modern medicine. Within communities, noma survivors face discrimination and stigma. The study highlighted a lack of information and knowledge about noma. However, surgical operations lead to patient satisfaction and these remain one of the coping strategies used to tackle the stigma and discrimination. The recommendations set out in this article are aimed firstly at stepping up research into the psycho-social impacts of noma, and secondly at considering these impacts in regional programmes and national plans to combat the disease.

Background: While noma affects hundreds of thousands of children every year, taking their lives, disfiguring them and leaving them permanently disabled, the economic and social costs of the disease have not been previously estimated. An understanding of the nature and levels of these costs is much needed to formulate and implement strategies for the prevention and control of this disease, or to mitigate its burden. The objectives of our study were to develop a model for estimating the economic and social costs of noma and to provide estimates by applying this model to the specific contexts of two countries in the “noma belt”, namely Burkina Faso and Niger. Methods: Three main approaches were used. The estimation of prevalence levels of potential noma cases and of cases that should receive and actually do receive medical care was carried out using a literature review. The documentary approach made it possible to estimate the direct costs of noma by analyzing the database of a non-governmental organization operating in this field and present in both countries. Indirect costs were estimated using the human capital method and the cost component analysis technique. Results: The direct costs of care and management of noma survivors amount to approximately USD 30 million per year in Burkina Faso, compared to approximately USD 31 million in Niger. They mainly include costs for medical treatment, surgery, hospital stays, physiological care, psychological care, social assistance, schooling, vocational training and care abroad. Indirect costs are estimated at around 20 million in lost production costs in Burkina and around 16 million in Niger. Costs related to premature deaths are estimated at more than USD 3.5 billion in Burkina Faso and USD 3 billion in Niger. Finally, the costs to survivors who are unable to marry are around USD 13.4 million in Burkina and around USD 15 million in Niger. Intangible costs were not calculated. Conclusions: The neglect of noma and inaction in terms of prevention and control of the disease have enormous economic and social costs for households, communities and states. Future studies of this kind are necessary and useful to raise awareness and eradicate this disease, which impacts the health and well-being of children and results in lifelong suffering and severe economic and social costs to survivors and their families.

: Noma (cancrum oris) is an orofacial gangrene affecting young children living in extreme poverty. The acute morbidity is high, and survivors suffer from physical and social sequelae. When diagnosed early, noma can be cured. Noma is especially prevalent in sub-Saharan Africa, where traditional medicine is the norm. The aim of this work was to provide 1-day training to traditional healers in Burkina Faso and to evaluate change in knowledge of noma across time. A sample of 78 healers who attended the training were asked to complete the same questionnaire before, immediately after, and 8 months after the training. A total of 66 healers completed the entire study. Before training, more than 40% of the participants did not know any of its key messages. Most of the key messages were acquired and still present after 8 months by a large proportion of the participants. Systematic intraoral examination was practiced by 7 (9.0%) of the traditional healers before training, and 43 (65.2%) reported doing so 8 months after training. The key messages aiming to improve early diagnosis as well as rapid and adequate treatment (the recognition of facilitating factors and the need to perform a systematic oral examination and to advise hospital transfer) have been well integrated. The study suggests that organizing a self-managed training program is feasible when done within an association, as was the case here, and owing to the willingness to collaborate shown by the traditional healers who participated in our study.