The atmosphere at the Sokoto Noma Hospital, named after the city and state in north-west Nigeria bordering the Republic of Niger, is serene. The buildings are modest structures painted in soft, earthy tones. Several large trees form lush green canopies, providing shade from the afternoon sun.

Huddled under the shade trees, caregivers — mainly mothers — engaged in quiet conversations. Their children were amongst those selected for reconstructive surgery during a two-week campaign of surgical interventions organised in February by Médecins Sans Frontières (MSF) in collaboration with the hospital.

The surgical campaigns, usually held four times a year, have been conducted since 2015, with 1310 surgeries conducted for 918 patients over the past decade.

Milestone moment 

But this year’s event came at a special moment. It was the first campaign since the WHO’s recognition of noma as a neglected tropical disease (NTD)—a category of diseases intrinsically linked with poverty.

Noma, is a deadly disease that begins as common gum sores but develops into ulcerative gingivitis that destroys the soft tissues and bones of the mouth, rapidly progressing to perforate the hard tissues and skin of the face.

It mostly affects children between the ages of two and six years, who are malnourished, live in extreme poverty and suffer from weakened immune systems.

Detected early, its progression can be halted rapidly through basic hygiene and/or antibiotics.  

Untreated, it progresses rapidly and has a 90% mortality rate within the first two weeks of the onset of the disease. This is primarily due to sepsis, severe dehydration or malnutrition.

Despite its aesthetics and functional impact, noma survivors are regarded as the lucky ones.

A lifeline for noma patients

Mohammadu Usman, 23, a popular figure at the Sokoto Noma Hospital, counts himself amongst the fortunate. At the age of five, he became infected with the disease. While he survived, he grew up with the prominent scars that the disease left on his face — characteristic to noma survivors.

“My parents were desperate to find a treatment that would help me look normal, just like everyone else,” Usman said.

He recalled that he could not eat in public and received disparaging remarks from people who did not know about noma.

In 2017, he and his father embarked on a gruelling 14-hour journey from Maiduguri to the hospital after they heard about the free surgical treatments. Usman’s timing was serendipitous, as he was chosen for surgery around the same time he presented at the hospital.

By the time Usman arrived at the hospital, he had developed trismus, a complication of noma that makes it difficult to open the mouth.

Since his initial surgery in 2017, he has undergone two more operations. The most recent one was performed last year.

“I have been told that I need another surgery,” he said.

But he is pleased with the outcome so far. It has given him a new lease of life. After his surgery, the hospital staff helped him enrol in a public school. To support himself financially, he started working as a hospital cleaner.

“This surgery has completely transformed my life. My parents, too, are happy about the changes,” he said.

MSF’s Surgical Intervention

This February, MSF conducted its 28th intervention at the Sokoto Noma Hospital. Over the course of two weeks, from February 11th to 23rd, MSF’s surgical team of four plastic surgeons, two maxillofacial surgeons, and five anaesthesiologists joined hands with the hospital’s staff to perform reconstructive surgeries for noma survivors.

Prior to the team’s arrival, the hospital staff conducted thorough screenings of noma patients to determine their eligibility for surgery, which is greatly influenced by their nutritional fitness. Twenty-nine patients were eventually selected to undergo surgical treatment.

Growing recognition of Noma nationally and globally 

The programme at Sokoto is the oldest in the country, and it was also the only one available before the launch of a Noma Centre in Abuja, Nigeria’s capital city, in November 2023.

The launch of the Abuja centre reflects the growing awareness about the disease across Nigeria, and more broadly in West Africa, where it is endemic.

Nigeria, with a national noma incidence ranging from 4.1–17.9 per 100,000 is amongst the eight countries with the highest incidence of noma in sub-Saharan Africa. Indeed, the countries in this region form the so-called ‘noma belt.’

The majority of the Nigerian cases are seen in the northern region. In 2018, a survey found that in north-west Nigeria, 3,300 out of every 100,000 children aged newborn to 15 years were affected by noma.

Estimates of global incidence are challenging due to insufficient data collected through standardised methods across the affected regions. The WHO’s global estimate of 140,000 noma cases annually, with a disease prevalence of 770,000 people, remains the most widely referenced. But that data dates from 1998. A 2023 study suggests a global incidence of 30,000–40,000 cases.

Cases are not limited to Africa. From 1950 to 2019, noma patients were reported in 88 countries. However, the number of countries reporting new cases narrowed to 23 across Africa and Asia between 2010 and 2019, with Italy being the only European country affected, according to a 2022  Lancet review. Amongst these, 11 were in West Africa, where Niger recorded the highest incidence in the sub-Saharan region, with an estimated seven to 14 cases per 10,000 children aged newborn to six years.

Exact causes of the disease remain unclear 

Although the disease is associated with extreme food insecurity, poverty, poor health, and unsanitary conditions, the exact causes are unknown.

Noma treatment depends on the disease stage. At early stages, antibiotics, better oral hygiene practices and nutritional support are effective. In advanced cases, wound care, surgical procedures and physiotherapy may become necessary.

With the backing of international NGOs and the WHO, several West African nations have successfully established specialised noma treatment centres. Since 2015, the Lausanne, Switzerland-based Fondation Sentinelles has operated a care centre in Niger and Burkina Faso, treating nearly 2,000 children affected by the disease.

Ethiopia has three major noma care centres. In Nigeria, beyond the collaboration between the Sokoto Noma Hospital and MSF, noma programmes have received support from the Dutch Noma Foundation, the German nonprofit Hilfsaktion Noma, and the Noma Aid Nigeria Initiative (NANI), with the latter two joining forces to establish the country’s second noma centre in Abuja.

 

Sokoto centre remains strategically important  

Despite the creation of the new Abuja noma centre, the Sokoto hospital will remain strategically critical due to its much greater accessibility to patients in the country’s remote northern region, which sees the highest prevalence of the disease.

The centre has also built a reputation for community outreach into the region.

Its success with outreach is associated with the hospital team’s innovative use of storytelling in their awareness-raising activities. This includes a dramatic tale about a fictional boy suffering from noma, designed to break taboos and spark conversations amongst community members.

Supported by the MSF outreach team, the hospital regularly conducts awareness-raising activities within communities in Sokoto, Kebbi and Zamfara states, all in north-west Nigeria, where noma has long been prevalent. They distribute leaflets, make dramatic presentations and educate villagers on noma recognition.

To streamline the referral process, medical staff require referring hospitals to send images of patients through WhatsApp for preliminary assessment.

The social stigma attached to noma leads to isolation, complicating case detection. To counter this, each community appoints a focal person for follow-up on referrals.

Surgical interventions remain critical 

Even with improved surveillance, however, the surgical interventions offered by the hospital remain critical to recovery, in light of the rapid progression of the disease.

The surgery involves creating new facial features for the patients. The surgeons reconstruct damaged noses, lips, cheeks, palates, and eyelids, and perform trismus surgery. Some procedures can last up to six hours.

The trismus release surgery to improve mouth opening poses a formidable challenge, even for the highly skilled surgical team.

“Normally, we pass a laryngoscope through the mouth to deliver general anaesthesia. With trismus, the mouth is no longer an option. So we go through the nose—a far more complicated procedure,” explained Audrey Beckers, a Dutch anaesthesiologist who is on her third MSF mission in Africa.

Given their socio-economic status, none of the noma patients could afford such care if they had to pay out-of-pocket.

“In a public hospital, where treatment is highly subsidised, each stage of the surgery wouldn’t cost less than 300,000 naira [$190]. Private hospitals could charge up to a million naira [$633] per stage. and noma patients [often] require multiple procedures,” said Jacob Legbo, the MSF surgical team leader.

“Knowing that these are poor patients, the opportunity to provide them with free treatment brings immense joy to me and the team.”

Localisation of the surgical intervention

In the first years, MSF depended primarily on surgical team members who travelled to Sokoto from Europe or elsewhere.

However, by 2018, local Nigerian surgeons were gradually being integrated into the work. The travel restrictions imposed due to the 2020 pandemic, meanwhile, limited the participation of foreign surgeons, resulting in only one intervention held that year.

This accelerated a shift in the organisation’s approach, prioritising the further integration of Nigerian surgeons, post-pandemic. The goal was to foster an exchange of skills and experience with their international counterparts, paving the way for local professionals to eventually spearhead the missions.

The strategy appears to be working. Currently, the pool of national surgeons and anaesthesiologists has increased to 45. For this outreach, the surgical team was predominantly Nigerian, with only two foreign anaesthesiologists participating.

Reinvigorated national efforts

In 2017, the Nigerian Federal Ministry of Health (FMoH) designated November 20 as National Noma Day.

By 2019, with the backing of the WHO Regional Office for Africa, Nigeria launched its national action plan to control noma. Ten other countries with a high noma burden have also developed and implemented similar national initiatives under the WHO’s guidance.

During the 2023 national noma day celebration, a new 100-bed national noma centre was unveiled in Abuja, within the grounds of the National Hospital, a tertiary hospital in the country’s capital.

This centre is now Nigeria’s second dedicated facility for noma treatment. It was established through a collaboration between the Nigerian NGO, Noma Aid Nigeria Initiative (NANI), and the federal ministry of health, with support from the German non-profit Hilfsaktion Noma.

Funding from the WHO and MSF also enabled the Nigerian Health Ministry to provide specialised noma training to 741 primary healthcare workers from 2021 through the first half of 2022. Additionally, noma is being integrated into the training curriculum for Nigeria’s nursing and midwifery, MSF told Health Policy Watch.

Pathway to global recognition

In 2021, WHO adopted a landmark Resolution on Oral Health at the 74th World Health Assembly. It recommended that “noma should be considered for inclusion in the NTD portfolio as soon as the list is reviewed in 2023.”

In January 2023, the Nigerian government submitted an official request to WHO on behalf of 32 other member states to have noma recognised as an NTD. The request was backed up by a dossier, providing evidence on how noma meets all four criteria for neglected diseases.

The African campaign was supported by a unique constellation of global health forces in Geneva’s global health hub. This included not only WHO but also leading universities, the Hospitaux Universitaires de Geneve, MSF, Fondation Sentinelles and others.

By December 15, WHO officially recognised noma as a neglected tropical disease, increasing the number of NTDs to 21.  It is hoped that the long-awaited move will lead to more research and funding investments in the long-neglected NTD.

Significance of noma’s recognition as an NTD

In Sokoto, hospital staff are optimistic that noma’s inclusion on the WHO NTD list will drive more research, advocacy and funding.

“My joy in the WHO recognition is that noma will get more attention,” said Mulikat Okanlawon, a noma survivor who now works as a hygiene officer at the Sokoto Noma Hospital. Alongside fellow survivor Fidel Strub, Okanlawon co-founded Elysium, the first foundation for noma survivors.

“[W]hat this list does is it makes the disease legitimate in the eyes of donors to fund further research on the disease, and it brings awareness,” said Mark Sherlock, MSF Health Advisor for Nigeria, in an NPR interview.

The organization expects that the recognition of noma will attract more stakeholders at important stages of noma care: early detection, treatment and referral.

Despite the presence of a new facility in Abuja, the surgical interventions offered by the noma hospital in Sokoto continue to grow in popularity – due to its successful outreach activities and close proximity to communities where the disease is most prevalent.  Unfortunately, the funding has not kept up with the need for updated infrastructure.

“The [hospital] structure has been here for more than 20 years and there are some departments in the hospital that need to be upgraded, like the outpatient unit,” said Abubakar Bello, the hospital’s chief medical director.

“The state government has made some contributions, but there is still a lot left to be done,” Bello said.

That’s all the more reason why the recent WHO recognition of Noma is so important, he added, “hopefully we will see more organisations offering support in the prevention, treatment, or rehabilitation aspects of the disease.”

Nutritional support also critical 

While MSF and the state cover the cost of meals for patients during their stay at the hospital, Nigeria’s high inflation rate and associated food insecurity threaten the ability of noma survivors to meet their nutritional needs after discharge. This puts survivors at risk of relapse.

Malnutrition is commonly reported among patients admitted to the hospital, making nutritional rehabilitation a crucial part of treatment.

‘If a noma survivor, after being treated for malnutrition and infection, returns to the same living conditions that led to the disease, there’s a chance they could develop noma again.

“We cannot overlook the possibility of a noma relapse, and these are the areas where more research is needed,’ said Mohammed Abdullahi, consultant oral and maxillofacial surgeon at the University of Maiduguri Teaching Hospital, in the north-eastern region of Nigeria.

Acute need for more surveillance and research  

As many stakeholders noted, the WHO’s recognition is merely the beginning for a disease as neglected as noma – where the agency’s most recent data on global prevalence dates back to 1998. In Nigeria, research on noma has primarily been regional, focusing on northern Nigeria, where most cases are seen.

At a major noma scientific conference in Nigeria in November, Peter Ajanson, MSF Nigeria’s deputy medical director, noted an increase in reports of noma cases in other Nigerian states which were previously unaffected. However, due to limited surveillance, the real extent of noma’s impact across Nigeria remains unknown.

The geographical spread of noma is increasing. We are now seeing cases come from states we previously do not see from. https://t.co/9KFPcWB9Qg

— Dr. Peter Ajanson (@AjansonPeter) November 24, 2023

Like in other noma-priority countries, international aid and grants have fuelled much of Nigeria’s fight against the disease. However, local researchers like Seidu Bello from the Nigerian International Craniofacial Academy have urged Nigeria’s Federal Ministry of Health to invest more in increasing public awareness, early detection, and the national capacity for diagnosing and treating the disease

“Therefore, we advocate public awareness on the disease risk factors and prevention within the [country’s] sub-regions as well as training of primary health personnel on disease identification, primary care and nearest referral centres,” he wrote in his study on noma’s incidence and prevalence in north-central Nigeria. He argued that this will help ensure timely treatment of those most in need.

Across the hospital, Usman was sweeping off the sand and fallen leaves that had gathered on the outdoor passageway.

He was mindful of the elderly man and young child sitting nearby as he pulled the dirt across the terrazzo floor and into a small pile.

He harbours dreams bigger than his present situation. He hopes he can complete his education, improve his English and someday become a doctor.

Image Credits: Abdulrasheed Hammad , Encyclopædia Britannica, Fabrice Caterini/MSF, Galli, A., et al. The Lancet Infectious Diseases., Nigeria Health Watch, Abdulrasheed Hammad.