York researchers take call for noma to be recognised as a neglected tropical disease to Houses of Parliaments

News | Posted on Thursday 2 February 2023

On Wednesday 11 January, University of York researchers headed to the Houses of Parliament to raise awareness about the neglected disease, noma, and the ongoing campaign for its formal recognition 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 across countries in Africa, Asia, and South America. It is a preventable and highly treatable disease. Noma starts in the mouth as a gangrene and may lead to the destruction of skin, muscle, and bone. If detected early on, noma can be treated inexpensively with generic antibiotics. Without treatment, however, up to 90% of children do not survive. Those people who do survive the full onset of noma are likely to encounter social isolation, stigmatisation, and discrimination.

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.

They have joined forces with the humanitarian organisation Médecins Sans Frontières (MSF), and together held an advocacy event at the Houses of Parliament on 11 January 2023. The event was supported by the All-Party Parliamentary Group on Malaria and Neglected Tropical Diseases and aimed to raise awareness of noma – attendees heard from noma advocates, humanitarian practitioners, researchers, and MPs.

A noma survivor, advocate, and co-founder of Elysium, Noma Survivors Association, Fidel Strub, spoke at the event. He emphasised the lack of knowledge of noma at both community and international levels. For Strub, noma’s inclusion on the World Health Organisation (WHO) list of Neglected Tropical Diseases would be an important step to achieving wider awareness of this diseases. The audience was also privileged to hear from Mulikat Okanlawon, a noma survivor and hygiene officer at Sokoto Noma Hospital Nigeria, via video message.

Mulikat shared her story: she spoke of the social isolation and stigmatisation she encountered after she developed noma as a child and how today she is advocating for the rights of other noma survivors as a co-founder of the Elysium, Noma Survivors Association.

Dr Ioana Cismas, who leads the University of York’s work on noma, said: “Seeing survivors take centre stage at Parliament is 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.”

Ioana Cismas and Alice Trotter - both from the York Law School and the Centre for Applied Human Rights - have been conducting pioneering research into different ways of framing noma – as a neglected tropical disease and as a human rights issue. The findings of this research have also been used in the preparation of a dossier of evidence that will be reviewed by the WHO Strategic and Technical Advisory Group for Neglected Tropical Diseases. It is hoped that this committee will then recommend noma’s inclusion onto the WHO Neglected Tropical Diseases portfolio.

As the fourth annual World Neglected Tropical Diseases Day is commemorated on 30 January 2023, Ms Trotter noted: “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.”

James Sunderland MP and Vice-Chair of the All-Party Parliamentary Group on Malaria and Neglected Tropical Diseases who attended the event at the House of Commons agreed that noma’s inclusion on the WHO list is a “no-brainer” and called on the Government to support the ongoing campaign.

Noma, the Neglected Disease. An Interdisciplinary Exploration of its Realities, Burden, and Framing is available https://snis.ch/wp-content/uploads/2020/01/2019_Mpinga_Scientific_Report.pdf

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