WHO to Decide on Including Noma as a Neglected Tropical Disease in 2023
Umar, an eight-year-old noma patient from Kano Sstate, Nigeria, and Adamu, a 15-year-old noma patient from Kebbi State, stand at the entrance of the post-operative ward at the Sokoto Noma Hospital. The two boys are looking forward to going outside.

Twenty years ago, 16-year-old Mulikat Okanlawan embarked on a 1000-kilometer journey from her home in the Nigerian capital of Lagos to the Northwestern city of Sokoto in a bid to change her life.

She is a survivor of noma, a little-known bacterial disease that attacks cells in facial tissue and bones. On paper, Okanlawan had been lucky. Noma is fatal in 90% of cases, often taking the life of those infected within mere days.

Mulikat, a 33-year-old former patient originally from the south of Nigeria, moved to Sokoto 17 years ago to undergo facial reconstructive surgery. She now works in the hospital.

But survivors, mostly children between the ages of 2 and 6 at the time of infection, are left with severe facial deformities that follow them long after the acute phase of noma subsides. These can make it hard to eat, speak, see or breathe, and often lead to discrimination against survivors in their own communities.

“It left a deadly mark on my face that hindered me from associating with people in the community,” Okanlawan said. “Imagine a life where people are running away from you because of your condition. I used to cry every day. I was alone.”

Noma results from deadly synergy between bacterial pathogens that causes ulcers to develop in the mouth, followed by the destruction of cells in the tissues and bones of the face. Often referred to as “the face of poverty,” its key risk factors include malnutrition, lack of basic hygiene, contaminated drinking water, immunodeficiencies, and recent illness, especially from malaria or measles.

Okanlawan has since received several reconstructive facial surgeries at the Sokoto Noma Children’s Hospital, the only specialised noma hospital in Nigeria since its founding in 1999. Little by little, Okanlawan found a new lease on life.

“I began to admire myself,” she said. “I began to relate with people in the community.”

After returning to school to complete her education, Okinlawan returned to Sokoto, where she now works as a hygiene officer and helps patients recover from the trauma of disfiguration.

WHO decision due in 2023

Despite years of campaigning from medical organizations and national governments, noma has yet to be included in the World Health Organization’s neglected tropical diseases list, an omission Médecins Sans Frontières (MSF) health advisor for Nigeria Mark Sherlock says makes noma “the most neglected of the neglected diseases.”

But this may be about to change. In late January, the Federal Ministry of Health of Nigeria, supported by 30 member states from five WHO regions, submitted a dossier on noma requesting the formal recognition of noma as a neglected tropical disease (NTD).

The request is a follow-up to the resolution on oral health passed by WHO at the 74th World Health Assembly in 2021, which recommended that “noma should be considered for inclusion in the NTD portfolio as soon as the list is reviewed in 2023.”

The latest WHO statistics – updated in 1998 – estimate 140,000 people are affected by noma every year. No systematic study of its disease burden has been conducted in the intervening 25 years.

The WHO’s Strategic and Technical Advisory Group for Neglected Tropical Diseases is supposed to make a final decision on whether to add noma to its list of neglected tropical diseases this year, but a date for the meeting has not yet been published.

Not a “silver bullet”, but noma belongs on the list

Amina, an 18-year-old noma patient from Yobe state, visited the Sokoto Noma Hospital for the first time in November 2016 with her mother. She has been disfigured since early childhood, and has a habit, like many noma survivors, of hiding her scars behind a veil. (MSF, Sokoto, Nigeria.) 
18 October, 2017.

Despite its omission from the official WHO list, Noma is the quintessential neglected disease.

It disproportionately affects people living in extreme poverty, is generally neglected by research, affects populations in tropical and sub-tropical areas of Africa, Asia, and Latin America, and incurs significant socio-economic costs on the communities it affects.

Its high mortality rate can also be attributed to neglect and lack of awareness education among the public and medical communities due to the highly treatable and preventable nature of the disease.

“Due to extreme poverty and lack of awareness, unfortunately, a lot of children die at home without even making it to the hospital,” said Dr Shafiu Isah, Chief Medical Director at the Sokoto Noma Children’s Hospital. “This disease is still not very well known in our communities, including among health care workers, who often mistake it for cancer or other illnesses.”

Doctors, researchers and activists recognize that the inclusion of noma on the WHO list would not change the situation of patients on the ground overnight, but say recognition of its neglected status would shine a much needed spotlight on a disease in dire need of renewed resources and attention.

“Whilst not a silver bullet, noma’s inclusion on the WHO list will draw attention to the disease and those at risk of or experiencing it, attract funding for research, prevention, and treatment, and integrate noma in existing protocols of disease-monitoring,” said Dr Ioana Cismas, co-lead of the research collective The Noma Project.

“Those who have lived experience of this disease are calling for national and international action.”

Read more: Noma Survivors Demand that WHO List the Disease as a Neglected Tropical Disease

Image Credits: Claire Jeantet – Fabrice Catérini / Inediz’.

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