Noma is an orofacial gangrene affecting malnourished children and mainly observed in tropical countries, particularly sub-Saharan Africa. Epidemiological data on noma are scarce, but a current estimate of the global incidence is 30,000–40,000 cases per year, with a mortality rate of approximately 85% and a burden of disease calculated to be a loss of 1–10 million disability-adjusted life years. The etiology of noma is multifactorial with malnutrition as an ever present factor, often in combination with concomitant diseases, such as measles, malaria, and human immunodeficiency virus (HIV), and poor oral hygiene. The pathogenesis is a fast-spreading, noncontagious gangrenous infection occurring in the face, often preceded by acute necrotizing gingivitis, and stomatitis. Rare microbiological studies suggest an opportunistic infection caused by an imbalance in normal intraoral microorganisms. Prevention lies in food security, measles vaccination, prevention of malaria and HIV, including the early detection and treatment of necrotizing gingivitis and stomatitis. Early treatment with antibiotics may prevent gangrene or reduce its extent. Late treatment consists of surgical rehabilitation, which is often complex. However, access to medical care is very limited for noma patients due to the extremely poor conditions in which they live that are frequently located in remote rural areas. The authors support the United Nations Human Rights Council Resolution 19/7 adopted on March 22, 2012 “The right to food,” and advocate for the inclusion of noma on the list of neglected tropical diseases to encourage more medical and institutional attention for this often lethal or very mutilating infectious gangrene.

Background: Noma (cancrum oris) is an ancient but neglected and poorly understood preventable disease, afflicting the most disenfranchised populations in the world. It is a devastating and often fatal condition that requires urgent and intensive clinical and surgical care, often difficult to access as most cases of noma occur in resource-limited settings. We conducted a scoping review of the literature published on noma to understand the size and scope of available research on the disease and identify research gaps that need to be addressed to evolve our understanding of how to address this disease. Methods: We searched 11 databases and collected primary peer reviewed articles on noma in all languages, the final search was conducted on 24^th August 2021. The oldest manuscript identified was from 28^th March 1843 and the most recently published manuscript was from 3^rd June 2021. Search terms included cancrum oris and noma. Data was extracted using a standardised data extraction tool and key areas of interest were identified. The Preferred Reporting Items for Systemic review and Meta-Analyses requirements were followed. Results: The review included 147 articles, the majority of the studies (n = 94, 64%) were case reports. Most manuscripts (n = 81, 55%) were published in the 2000s, 49 (33%) were from the 1900s and 17 (12%) from the 1800s. The main areas of interest identified were the history and epidemiology of the disease, noma’s clinical progression and aetiology, treatment regimens, mortality rates and the risk factors for the development of noma. Conclusions: Noma has been reported in the literature for hundreds of years; however important gaps in our understanding of the disease remain. Future research should focus on determining the burden and distribution of disease; the true mortality rate, pathogenic cause(s) and the factors that influence prognosis and outcomes after treatment.

Noma, an orofacial gangrene and opportunistic infection, affects primarily malnourished children living in extreme poverty. Neglected, forgotten, unknown by most health workers, noma results in death, disfigurement and disability of some of the world's most vulnerable children. Noma is a biological indicator of multiple human rights violations, including the right to food. International support and national attention in countries with noma are lacking. The end of neglect of noma can lead to the elimination of this horrific childhood disease.

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.