Realties & Lived Experiences of Noma
Existing studies on noma have largely focused on clinical descriptions and surgical techniques, and are concentrated geographically on a small number of countries in Africa. Whilst these remain important areas of research, designing effective, holistic interventions for the prevention and treatment of noma globally and for the support of survivors requires a much fuller understanding of the lived realities of children at risk and children and adult survivors of noma, including in Asia, in relation to two aspects: the risk factors, social determinants and socio-economic costs of the disease, and the realisation of survivors’ human rights.
Risk Factors, Social Determinants & Socio-economic Costs of Noma
Historically, noma was present in Europe and North America until the early 20th century. Due to the improvement in the standard of living, better hygiene and access to health care, noma disappeared in these regions, with a notable re-emergence in Nazi concentration camps and in European countries subjected to extreme food shortages during World War II (
Enwonwu et al; Bos & Marck). These historical accounts suggest that severe chronic malnutrition is a major risk factor of noma.
Contemporary case reports highlight factors repeatedly associated with noma in Africa, which are therefore considered to be the probable risk factors of the disease.
Baratti-Mayer et al found that severe chronic malnutrition, which could begin in utero, recent febrile disease and imbalance in the oral microbiota are main risk factors of noma.
Whilst extreme poverty is known to be a social determinant of noma, there has been little exploration of its relational influence on the lived experiences of those affected by noma. Prior fieldwork led by the Noma Project researchers Adamou Moussa-Pham and Baratti-Mayer suggests that costs of treatments at specialised medical centres, alongside the expenses of multiple possible journeys and consequent loss of household income combine with conditions of poverty to prohibit affected families from accessing timely healthcare. As such, poverty appears to be both a social determinant of noma and a consequence of the disease.
Outside of Africa, even less is known about noma’s risk factors and social determinants. First reported in Laos in 2002, Srour has seen and interviewed a total of 49 noma survivors.
Further research is needed to confirm the significance of the probable risk factors of noma on a larger scale, and to holistically explore its social determinants, which have never been systematically studied, and may act in a similar, yet more insidious manner.
No study has yet attempted to undertake a calculation of the direct, indirect and intangible socio-economic costs of noma, likely hampered by the lack of a systematic understanding of the lived realities of those affected by noma and the absence of a reliable estimate of its global burden - yet, these are all aspects which will be examined in the Noma Project.
The Realisation of Noma Survivors’ Human Rights
In-depth research examining the lived realities of child and adult survivors of noma in terms of the realisation/violation of their human rights is almost non-existent. Drawing on secondary literature to document violations of human rights , Cismas has drafted the only report that systematically examines noma from a human rights perspective (Cismas/UN HRCAC; Jean Ziegler/Righttofood.org).
Empirical evidence, scarce as it is, indicates that noma survivors experience significant infringements of their human rights. One study notes that of 200 noma survivors with sequelae, 46% suffered discrimination and 32% social exclusion (Abdou Hassane).
Anecdotal situations depict children with noma being perceived as a curse and a shame brought onto the family, and hidden away for fear of social ostracization (Baratti-Mayer et al) - this represent serious threats to the right to life, given the fulminant progression of the disease and the high death rate of untreated cases. Other severe challenges faced by survivors include securing access to healthcare, education and employment, with women specifically affected at the intersections of socialised expectations of their gender and perceptions of the disease.
By exploring the relationship between risk factors, social determinants and violations of human rights the Noma Project will provide a more holistic, relational understanding of individuals’ health and the corresponding obligations that states have under international human rights law to ensure the realisation of the right to health, among others. Such an approach also provides acknowledgement of ‘the constitutive role of power in the broader determination of health’ (Kenyon et al) whether this is wielded by state actors - national and local decision- and policy-makers and public health workers implementing policies on the ground - or by non-state actors - families, traditional healers, religious and traditional leaders. The design of specific actions that states must pursue, obligated as they are under international human rights law to progressively realise the human rights of all, must reflect these complex realities on the ground.
Our Methodology
In order to provide an in-depth understanding of the risk factors, social determinants, and socio-economic costs of noma & the realisation human rights of survivors, the Noma Project will undertake the following research steps:
Extensive archival research of records of noma patients
The project team will engage in extensive archival research of the over 1500 records of noma patients treated by Sentinelles’ care centres in Burkina Faso and Niger and Health Frontiers in Laos over the last three decades. These records are comprised of socio-medical information of noma patients and represent an exceptionally rich resource for analysis of the risk factors & social determinants of noma.
Review of historic literature on noma in Europe and North America
A literature-based, largely historic approach will be employed to examine the cases of noma documented in Europe and North America. The aim of the literature review is to provide insights on how noma’s historic and present risk factors & social determinants in Europe and North America compare to those existing today in noma prevalent regions. In turn, this may disclose a richer pattern of understanding of how noma can be prevented or even eradicated, and shape some of our policy recommendations.
Fieldwork in case study countries (Burkina Faso, Niger and Laos)
To complement data obtained through desk-based research, fieldwork consisting in surveys and semi-structured interviews, will be conducted predominantly in Burkina Faso and Niger, facilitated by the local networks of project partners, including Sentinelles, Hilfsaktion Noma e.V., La Voix du Paysan and SongES. Participants will include health workers, representatives from the welfare sector, and national representatives of traditional healers associations. Additionally, noma patients in Sentinelles care centres in Burkina Faso and Niger and family members will be interviewed. Follow up interviews with noma patients in Laos will also be organised.
Socio-economic cost estimation
A model for estimating noma’s socio-economic costs (direct, indirect and intangible costs) will be developed on the basis of previous work carried out by Kabengele Mpinga et al by combining epidemiological, demographic and human capital approaches and relying on data from existing literature and relevant research findings of the present project.
Legal doctrinal and socio-legal analysis
By employing doctrinal and socio-legal methods the researchers will i) map the relevant international and regional human rights treaties ratified by the case study countries; ii) identify and analyse the relevant normative content of the rights of individuals who are at risk of or have survived noma and the correlative obligations of states; iii) perform a qualitative assessment of incorporation of international obligations in domestic legislation and case law; iv) and provide a socio-legal analysis of noma’s risk factors & social determinants and human rights.