AMSTERDAM/NEW YORK, February 2, 2023—Noma, a chronically neglected disease that affects people in poverty, is finally becoming more widely recognized as 30 countries have asked the World Health Organization to add noma to its official list of Neglected Tropical Diseases, driving funding and support for screening, treatment and research.
“There is no other infectious disease that kills so many people, so quickly,” said Mark Sherlock, Doctors Without Borders/Médecins Sans Frontières (MSF) health advisor for Nigeria. “People die from noma because of limited knowledge about the disease and how to detect it. More effort is needed to detect cases early and identify survivors.”
Noma starts as an inflammation of the gums but spreads rapidly, destroying facial tissues and bones. While noma is preventable and treatable, without treatment up to 90 percent of people infected will die, usually within a short time. Those who survive are left with severe facial disfigurement that can make it hard to eat, speak, see or breathe. Survivors often face stigma.
Mulikat Okanlawon, an MSF hygiene officer in Sokoto, Nigeria, survived noma at a young age and is now an advocate for people and communities affected by noma. "It left a deadly mark on my face that hindered me from associating with people in the community," she says. "I couldn’t go out, I couldn’t go anywhere. Imagine a life where people are running away from you because of your condition."
Noma is mostly found in isolated communities in Africa and Asia but there is no mapping of its global prevalence. It is associated with malnutrition, unsanitary living conditions and limited access to health care and vaccinations.
Mulikat Okanlawon, a 37-year-old former patient originally from the south of Nigeria, moved to Sokoto 17 years ago to undergo facial reconstructive surgery. She has been operated on several times over the years and now works in the Sokoto Noma Hospital as a health promoter. Nigeria 2017 © Claire Jeantet - Fabrice Caterini/INEDIZ
In 1998, the WHO estimated that noma affects 140,000 people every year and that 770,000 people had survived an initial infection. However, these data have not been updated since then.
Over the past three years, MSF has advocated for and supported the submission of a dossier on noma to the WHO by a representative of Nigeria's Federal Ministry of Health, with 30 other countries serving as co-sponsors. This submission occurred at multiple WHO offices last month.
A health promotion team shows leaflets to the local community to check if there are any people infected with the disease in the area. They also inform people about the causes of noma and the importance of treatment in the early stages of the disease. Nigeria 2017 @ Claire Jeantet - Fabrice Caterini / Inediz
Adebowale Murtala, MSF counselor and educator in Sokoto Noma Hospital, speaks with Aliyu, a 27-year-old noma patient. At first, the stigma of the disease holds patients back. With support from the mental health team, they start asking questions about their condition and sharing their fears. Nigeria 2017 © Claire Jeantet - Fabrice Caterini/Inediz
MSF regularly treats patients with noma at the Nigerian Ministry of Health’s Sokoto Noma Hospital, in northwestern Nigeria, where the disease is prevalent. MSF provides reconstructive surgery, nutritional and mental health support and outreach activities. Okanlawon, who tells her story internationally, describes how her life improved with medical care, including plastic surgery. "I began to admire myself," she says. "I began to relate with people in the community and so on.Then, I enrolled to school at a later age to be able to catch up in life."
The request for noma's designation as a Neglected Tropical Disease is in line with a resolution on oral health adopted in 2021 at the 74th World Health Assembly recommending that “noma should be considered for inclusion in the NTD portfolio as soon as the list is reviewed in 2023.”
The WHO is expected to decide whether to add noma to its list of Neglected Tropical Diseases during one of its biannual meetings in 2023.
“The inclusion of noma in the list would shine a spotlight on the most neglected of neglected diseases, facilitating the integration of noma prevention and treatment activities into existing public health programs and the allocation of much-needed resources,” said Sherlock. “We want children to be screened in endemic countries for noma from the first sign of symptoms, when lives can still be saved. Noma is a disease that should no longer exist.”
Since 2014, MSF surgical teams have carried out 1,066 surgeries on 717 patients with surgical needs due to noma. All services at Sokoto Noma Hospital are provided free-of-charge.
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