York researchers call for noma to be recognised as neglected tropical disease

Posted on Thursday 26 January 2023

The event was part of an ongoing campaign for noma to be formally recognised by the World Health Organisation as a neglected tropical disease. 

Noma primarily affects children between two and six years old living in conditions of extreme poverty in countries across Africa, Asia, and South America. 

It is a preventable and highly treatable disease. Noma starts in the mouth and can spread very quickly and may lead to the destruction of skin, muscle, and bone. If detected early on, noma can be treated inexpensively with generic antibiotics. 

Research

Without treatment, however, up to 90% of children do not survive noma’s full onset - this is a staggering mortality rate! Survivors of noma are likely to encounter social isolation, stigmatisation, and discrimination as well as difficulties with speaking, eating, and sight.

Researchers at the University of York’s Centre for Applied Human Rights and the York Law School have been working on noma as a human rights issue since 2009.

Advocacy event

Together with the charity Médecins Sans Frontières (MSF), also known as Doctors Without Borders, York researchers held an advocacy event at the Houses of Parliament, which was supported by the All-Party Parliamentary Group on Malaria and Neglected Tropical Diseases. 

Noma advocates, researchers and MPs, raised awareness and made the case for noma to be recognised by the World Health Organisation (WHO) as a neglected tropical disease and human rights issue.

Action

Co-lead of one of the largest collaborative projects on noma, Dr Ioana Cismas from the University of York, said: “Seeing survivors take centre stage at Parliament was humbling. Those who have lived experience of this disease are calling for national and international action – this is the human rights approach to noma unfolding before our eyes. 

“Whilst not a silver bullet, noma’s inclusion on the WHO list will draw attention to the diseases and those at risk of or experiencing it, attract funding for research, prevention, and treatment, and integrate noma in existing protocols of disease-monitoring.”

PhD student Alice Trotter from the Centre for Applied Human Rights, said: “There is clear evidence that noma meets the formal criteria to be included in the WHO list of neglected tropical diseases. Doing so would be a first step towards systematic and assumed action to prevent, detect and treat noma and redress the human rights at risk when a person develops noma.”

Survivor

A noma survivor, advocate, and co-founder of Elysium, Noma Survivors Association, Fidel Strub, spoke at the event, emphasising the lack of knowledge of noma at both community and international levels. 

Attendees of the event also heard from Mulikat Okanlawon, a noma survivor and co-founder of Elysium, Noma Survivors Association, who shared her story of social isolation and stigmatisation as a result of noma as a child. 

The fourth annual World Neglected Tropical Diseases Day is commemorated on 30 January 2023.