Noma, The Neglected Disease. An Interdisciplinary Exploration of Its Realities, Burden, and Framing

How can raising awareness, better prevention and treatment help individuals suffering from Noma, the “neglected disease”?

Project Summary

Noma (cancrum oris) is a gangrenous disease that predominantly affects young children living in conditions of extreme poverty in Africa, Asia and Latin America. Noma starts in the mouth, spreading rapidly and destroying skin, muscles and bones. While surgery is costly and complex, if diagnosed early, Noma’s full onset is preventable and inexpensive to treat. Yet, the majority of children likely do not receive medical attention or receive it too late to save their faces and often their lives. Estimated at 90%, Noma has one of the highest mortality rates. Child and adult survivors suffer significant aesthetic and functional after-effects and are reported to go through intense social isolation, stigmatisation and discrimination.

The project seeks to address a range of questions concerning this issue, among which the following:

  • What is the epidemiological evidence and global burden of Noma?
  • What are the key risk factors of Noma?
  • Does the framing of Noma as a cause and effect of human rights violations contribute to greater awareness and action amongst stakeholders?

The interdisciplinary international research team consists of world-renowned experts in the fields of Noma, epidemiology, global health, and human rights law, experienced field practitioners and a doctoral student. We will draw on a mixed-method cross-disciplinary approach to research, to establish Noma’s epidemiology and global burden, to portray the experiences of child and adult Noma survivors, and to evaluate the implications of the framing of Noma as a human rights issue and neglected tropical disease (NTD). The case study contexts are Burkina Faso, Laos, Niger and, taken together, Europe and North America.

To generate academic and social impact at local, national and international levels through the inclusion of Noma in the WHO list of NTDs, the research team relies on strong partnerships and collaborations with non-, inter- and governmental key stakeholders.

Academic Output

Executive Summary

Noma is a gangrenous disease that predominantly affects small children living in extreme poverty. With an untreated mortality rate of up to 90%, noma leaves survivors with significant aesthetic and functional sequelae. This collaborative, interdisciplinary research project aimed to achieve greater understanding of noma across three dimensions: its epidemiology, the realities and lived experiences of individuals at risk of and survivors of noma, and the utility for advocacy of its framing as a neglected tropical disease (NTD) and human rights concern. The project findings provide clear evidence that noma meets the formal criteria to be included in the World Health Organization (WHO) list of NTDs. Such formal inclusion would be a first step towards systematic and assumed action to prevent, detect and treat noma and redress the human rights violations suffered by survivors.

Report

Final Scientific Report

This report discusses the findings of the research across its three analytical pillars: noma’s epidemiology and global burden, the realities and lived experiences of individuals at risk of and survivors of noma, and noma’s framing as a neglected tropical disease and human rights concern.

Article

Why is noma a neglected-neglected tropical 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 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.

Working Paper

Lao Noma Survivors: A Case Series, 2002–2020

Noma is a rapidly progressing infection of the oral cavity, mostly affecting children aged between 2 and 5 years. If untreated, mortality can reach 90% within a few weeks after the onset of symptoms. Most of the published literature on noma are case reports or case series from Africa. Studies including noma survivors in Asia are limited. We pre-sent a case series of noma survivors in Laos. A retrospective analysis of data collected to monitor the care provided to Lao noma survivors who presented for treatment from 2002 to 2020 was conducted. The review assessed data including sociodemographic characteristics, diagnosis, mouth opening, self-reported quality of life at admission and after surgery, and the names used for the disease. Of the 50 patients included, 25 (50%) were female. The median age of self-reported onset of acute noma was 4 years (interquartile range [IQR] 2–7 years). The noma survivors came from 14/17 (82%) of Lao provinces. There were 64 surgeries conducted on 45 of these survivors. There was a median of 25 years (IQR 16–33 years) between the time of acute infection and the provision of surgical care. Improvements in nutritional status and quality of life were evident after surgery. Patients referred to the disease as “Pak Phuey,” which means diseased mouth. Noma survivors frequently live for years with disabling sequelae. Surgical rehabilitation improves the quality of life for noma survivors.

 

Report

Noma & Human Rights Law – A doctrinal legal analysis with focus on Burkina Faso, Niger and Laos

This background study has been prepared in the framework of the research project Noma: The Neglected Disease. An Interdisciplinary Exploration of Its Realities, Burden, and Framing (hereafter, the Noma Project).1 It has a twofold aim. First, it seeks to complement and update the legal analysis provided in the 2012 Study of the Human Rights Council Advisory Committee (HRCAC) on severe malnutrition and childhood diseases with children affected by noma as an example (hereafter, the 2012 HRCAC Study).2 That report was the first iteration of noma’s framing from a human rights perspective and sought to identify the human rights of individuals at risk of or with noma that are at stake and pinpoint some of the states’ obligations that arise in the context of this disease. As it was restricted to 10,700 words,3 the study was not able to provide a deep grounding of noma in international and regional human rights law. The current study aims to address this shortcoming through a systematic legal analysis, whilst taking stock of the normative developments relevant to this disease and the legal and medical literature published in the past eight years. Second, the study aims to serve as background research for an article on the human rights framing of noma, as well as for policy papers developed for organisations working on the monitoring and prevention of noma which seeks to integrate a human rights framework in their work.

 

Working Paper

Coûts Economiques et Sociaux du Noma : conception et application d’un modèle d’estimation au Niger et au Burkina-Faso

Background
Alors que chaque année le noma affecte des centaines de milliers d’enfants, emporte leurs vies, les défigure et les handicape à jamais, ses coûts économiques et sociaux n’ont fait l’objet d’aucune estimation à ce jour. La connaissance de la nature et des niveaux de ces coûts est indispensable à la formulation et à la mise en œuvre de stratégies de prévention et de lutte contre cette maladie.
Notre étude avait pour objectifs de concevoir un modèle d’estimation des coûts économiques et sociaux du Noma et d’en fournir des estimations en appliquant ce modèle aux contextes spécifiques de deux pays de la ceinture du Noma, le Burkina- Faso et le Niger.

Méthodes
Trois principales approches ont été utilisées. L’estimation des niveaux de prévalence de potentiels cas de noma et des cas susceptibles d’être en soins ou effectivement soignés a été faite en recourant à une revue de littérature. L’approche documentaire a permis l’estimation des coûts directs du Noma par l’analyse d’une base de données d’une Organisation non Gouvernementale active dans ce domaine et présente dans les 2 pays. L’estimation des coûts indirects a été effectuée à travers la méthode du Capital humain et la technique d’analyse par composantes des coûts.

Résultats
Les coûts directs de soins et prise en charge de survivants de noma s’élèvent à environ 30 millions de US$ par an au Burkina Faso contre environ 31 millions de US$ au Niger.
Ils comprennent essentiellement de coûts de traitement médical, de chirurgie, de séjour hospitalier, de soins physiologiques, de soins psychologiques, d’assistance sociale, de scolarisation et formation professionnelle et de soins à l’étranger.
Les coûts indirects sont estimés à environ 20 millions de coûts de perte de production au Burkina et à 16 millions environ au Niger. Ceux liés aux décès prématurés sont estimés à plus de 3,5 milliards de US$ au Burkina Faso et à 3 milliards au Niger. Enfin les coûts de l’immariabilité des survivantes sont d’environ 13,4millions de US$ au Burkina et environ 15 millions US$ au Niger.
Les coûts intangibles n’ont pas été calculés.

Conclusion
Le déni du Noma et l’inaction en matière de prévention et de lutte contre cette maladie engendrent des coûts économiques et sociaux énormes pour les ménages, les communautés et les Etats.
De futures études de ce type sont nécessaires et utiles en vue de sensibiliser davantage les Etats et aboutir à l’éradication de cette pathologie qui handicape la santé et le bien-être des enfants.

Research Team

Emmanuel Kabengele Mpinga
Coordinator
University of Geneva

Mirko Winkler
Co-Coordinator
Swiss Tropical and Public Health Institute, Basel

Ioana Cismas
Co-Coordinator
University of York, UK

Denise Baratti-Mayer
Principal Member
University of Geneva

Peter Steinmann
Epidemiologist
Swiss Tropical and Public Health Institute, Basel

Marie-Solène Adamou Moussa-Pham
Principal Member
University of Geneva

Margaret Leila Srour
Principal Member
Health Frontiers Laos

Alice Trotter
Principal Member
University of York, UK

Emilien Jeannot
Associated Member
University of Geneva

Gabriel Alcoba
Associated Member
Geneva University Hospitals

Bernardino Fantini
Associated Member
University of Geneva

Moubassira Kagone
Associated Member
Centre de Recherche en Santé de Nouna, Burkina Faso

Status

completed

Disciplines

SDGs

Policy domains

Regions

Countries

Burkina Faso, Niger, Laos, United States of America, Europa

Host Institution

Coordinator

Year