Calling global attention to noma, "the most neglected of neglected diseases"

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.

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.

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.