A team of health professionals and Noma survivors called on the World Health Organization on Tuesday to list the deadly infection of the mouth and face as a neglected tropical disease (NTD) so that it can receive the attention it needs to be eradicated.

“We hope that we can bring global attention to this disease and work toward the elimination of Noma,” said Nigeria’s health minister Dr E. Osagie Ehanire. He was speaking at the Geneva Press Club ahead of a screening Wednesday evening of a new documentary film on Noma, Restoring Dignity by the filmmaker Claire Jeantet, followed by a panel discussion at the Geneva Graduate Institute’s Global Health Centre.

Noma is a progressive and usually fatal infection of the mouth and face that affects some 140,000 people a year – most in sub-Saharan Africa, predominantly young children between the ages of two and five years old, living in poverty. It has a 90% fatality rate.

Although the exact cause is still unknown, Noma is likely the result of a bacterial infection that attacks children who have weakened immune systems as the result of a previous illness, such as measles or tuberculosis.

“There is nothing that talks more about you than your face,” said Ehanire. “If your face is damaged, imagine the psychological and mental consequences.”

The 52-minute documentary film follows the stories of several Noma survivors from Nigeria who have also come to Geneva this week to stimulate awareness about the disease on the margins of the World Health Assembly.

For survivors – facial scars and stigma

Among them is Mulikat Okanlawon, an advocate and hygiene officer at the Noma Hospital in Sokoto, Nigeria, who shared her personal story about contracting the disease as a child. While around 90% of people who get Noma die, she survived.

“I recovered from the disease, but it left a deadly mark on my face, which stopped me from interacting with people and being a part of the community. I could not go out. I could not go anywhere. I could not even look at myself in the mirror like other children,” she said Tuesday. “I always cried… I often wished that I had not survived.”

Another survivor, Fidel Strub – now an advocate and president of Noma-Aid Switzerland – explained that Noma is not a disease a person gets as a child and then moves on. Recovery, he said, is a life-long fight and “takes a lot of energy, self-motivation” and money.

Dr Isah Shafi’u has been working at the Noma Hospital in Sokoto for the past decade and said he has treated around 2,000 patients with Noma. He described how children are brought to the hospital in a struggle between life and death and it is his job to bring them back to life.

“To bring back a smile to those children is really amazing,” he said. “It is the most wonderful feeling.”

“We do not want to leave anyone behind,” added Ehanire, noting that he had recruited several countries to co-sponsor a petition to WHO to include Noma on its list of NTDs.

More than 90% of the children who get Noma die

Noma is preventable, but only if there is early diagnosis and treatment, explained Dr Maria Guevara, International Medical Secretary for Médecins Sans Frontières (MSF). She said that good nutrition, proper oral hygiene and access to healthcare – including childhood vaccinations – all prevent Noma.

“More than 90% of the children who get Noma die in the first two weeks if they do not get the treatment they need,” Guevara stressed. While an estimated 140,000 children are infected with Noma each year, those statistics were last collected in the 1980s.

“The data has not been updated for more than 25 years, showing just how neglected the disease and its survivors are,” she added. “Neglect should not be the case for a disease that could be eliminated.

“I am here today to add my voice to the call for Noma to be listed as an NTD,” Guevara continued. “Let’s make it a disease of the past and no longer the face of poverty.”

Guevara’s words were echoed in closing by Prof. Dr. Bertrand Piccard, chairman of the Solar Impulse Foundation, in a video message.

“WHO needs to put Noma on the list of tropical neglected diseases,” he said. “If this does not happen, Noma will continue.”

He praised the hospitals and nonprofits working to raise awareness about and treat Noma, but said they will not succeed without WHO’s attention.

“Only WHO can do what we have not been able to do, only WHO – by putting Noma on the list of NTDs – can put a stop to this unacceptable situation in our world today.”

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REMINDER: GETTING NOMA OUT OF NEGLECT

Film screening and panel discussion
25 May 2022, 15:00 – 16:30
Auditorium Ivan Pictet, Maison de la paix, Geneva
Learn more >>

Image Credits: Wikimedia Commons, Screenshot.