Professor David Mabey: Noma’s journey to becoming an NTD

Professor David Mabey, Past President and Trustee of RSTMH and Chair of the Scientific and Technical Advisory Group of the WHO Department of NTDs, explains the decision behind noma being offically recognised as an NTD by the World Health Organization

Last month the WHO announced that noma is now officially recognised as a Neglected Tropical Disease. Noma, also known as cancrum oris or gangrenous stomatitis, is a rapidly progressive disease estimated to affect around 140,000 children every year. It starts as inflammation of the gums which, if not treated quickly, can lead to ulceration and the rapid destruction of the cheek, jaw, lip, nose and eye. It affects malnourished children from the poorest communities in the world and around 90% of cases prove to be fatal, usually within a few weeks of onset. 

Accurate estimation of noma’s global burden is challenging as many cases go undiagnosed, untreated and unreported due to its rapid progression, high fatality rate and associated social stigma. Many survivors of noma face social isolation, stigmatisation and discrimination in their communities. Associated mental health problems are common and affected children can often experience developmental delay when isolated from society. In 2012 the UN Human Rights Council Advisory Committee recognised noma as a cause and effect of human rights violations, including the child’s right to health, education and non-discrimination.   

The proposal to add noma to the WHO list of NTDs was submitted by the government of Nigeria, supported by an additional 31 WHO member states, following an impressive advocacy campaign led by Medecins Sans Frontieres (MSF). It was considered at the 17th meeting of the Strategic and Technical Advisory Group for Neglected Tropical Diseases, which I chaired. 

The committee agreed that noma fulfils the WHO criteria for a Neglected Tropical Disease (NTD). It affects populations living in poverty in tropical and sub-tropical regions causing important morbidity, mortality, stigma and discrimination, and is relatively neglected by research. We hope that adding it to the NTD list will increase awareness among clinicians that it can be easily treated with antibiotics if diagnosed in the early stages and lead to resources being made available to provide reconstructive surgery for those with the late sequelae and support research into its prevention and treatment.