Case study

Implementing human rights and global health standards for noma

Our research developed a novel human rights approach aimed at improving the prevention and treatment of noma while addressing rights violations and discrimination associated with the disease.

Stethoscope laid out around a small paper globe.

The issue

Noma destroys facial tissue of malnourished children living in extreme poverty.

Last encountered on a large scale in Europe in Nazi concentration camps, today noma has an incidence of 140,000 children affected yearly in Africa, Asia and Latin America with 770,000 survivors worldwide. The disease has a mortality rate of 90 per cent.

As recently as a decade ago, noma received little attention from affected and donor states, non-governmental organisations (NGO), humanitarian organisations and the medical community. It was not included on the World Health Organization's (WHO) list of Neglected tropical diseases (NTD) despite the fact that it affects the most vulnerable individuals in society, shares its main characteristics with other NTDs and has a higher burden of years lost due to premature mortality and disability than other NTDs.

The research

Our work innovatively applies a human rights approach to noma. It identifies the right-holders and duty-bearers to raise awareness and prompt governmental action for the prevention and treatment of this neglected disease, addressing its impact on human rights.

The findings demonstrate that substantive inequality and violations of socio-economic rights (in particular rights to food, health and sanitation) are risk factors of noma and that noma itself results in child rights violations.

Noma is easily treated with oral hygiene, mild antibiotics and nutritious interventions if recognised early. However, there is a social stigma attached to noma and there are no national protocols for treatment, resulting in a lack of knowledge among medical personnel. This means that up to 90 per cent of cases result in death.

Survivors face severe physical hardship and discrimination in health, education, work and family life and there are few strategies in place to address the problems.

The research found a lack of inter-governmental and governmental policies on awareness-raising, prevention and treatment. It also found the WHO's attention was limited to Africa which was insufficient in addressing the real global incidence and prevalence of noma.

The outcome

This research produced the Noma Human Rights Principles and Guidelines that recognise noma as a cause and effect of human rights violations.

Our research has had policy impact on UN mechanisms, NGOs, humanitarian organisations and the medical community.

We are now working towards implementing our work into outputs and engagement that will result in practical benefits for individuals, communities and states affected by noma.

We are doing this by working to improve UN monitoring of states’ human rights obligations regarding noma and the measures taken to prevent noma and associated discrimination.

We are also building the evidence and campaign base to secure the inclusion of noma on the WHO’s list of Neglected Tropical Diseases.

The impact of the research since Dr Cismas joined York has built on foundations established since 2012 in her work with the UN. The adoption by UN bodies has provided a platform from which Dr Cismas has been able to take the research forward with other bodies, communities and states.

Featured researcher

Ioana Cismas

Dr Cismas' interests lie in examining the status and roles of different types of actors in international law, exploring through interdisciplinary research the intersections between legal accountability and legitimacy.

View profile