Dr. Adachi Ekeh and Sheriff Gbadamosi (Lead writers)
For too long, noma has remained a disease of silence, devastating children in extremely poor and socially excluded communities. In Nigeria, the infection disproportionately affects children living in extreme poverty, where weak health systems and delayed care allow the disease to progress rapidly. Without timely treatment, noma is often fatal, and survivors face lifelong disability and social exclusion.
In December 2023, the World Health Organization (WHO) officially recognised noma as a neglected tropical disease (NTD), a moment that elevated a long-ignored condition to a global health priority. This recognition provided a moral and operational foundation for more coordinated action at the global and national levels. Yet, to understand why this recognition matters, it is necessary to confront the scale of the problem, especially in Nigeria.
A recent systematic review of studies involving Nigerian children found that noma occurs in a small but concerning proportion of children in the population studied. The review identified common risk factors, with approximately 88% of cases associated with malnutrition, 41% with a history of measles, and about 31% with malaria. The review also noted a possible trend towards higher prevalence in compared with the south, likely reflecting regional inequalities in poverty, malnutrition, immunisation coverage, and access to care. However, the available evidence is not yet strong enough to confirm this difference. Clinical incidence data reinforces the gravity of the problem. A long-term hospital-based study conducted between 1999 and 2024 in northern Nigeria estimated an incidence of 87.8 cases per 100,000 children, with a rising upward trend observed between 2020 to 2024. Incidence rates were highest in Sokoto, Kebbi, and Zamfara States, highlighting the need for targeted interventions.
Globally, noma remains severely under-measured, with the WHO’s most frequently cited epidemiological estimates dating back several decades. These older figures suggest up to 140,000 new cases each year and around 770,000 survivors worldwide. However, these numbers are widely considered underestimates, reflecting weak surveillance systems, high mortality, stigma, and delayed or absent care-seeking. As a result, many cases never enter routine health records.
Turning recognition into real-world momentum
Long before noma gained global attention, Nigeria Health Watch working alongside other civil society organisations, helped strengthen advocacy and public awareness through the Noma Aid Advocacy Project (NAAP). In December 2022, in partnership with the Noma Aid Nigeria Initiative (NANI), the project was rolled out across Adamawa, Benue, Nasarawa, Niger, Taraba, and the Federal Capital Territory (FCT). NANI is a Nigerian non-governmental organisation that receives funding support from German Hilfsaktion Noma eV and private donors in Germany and Austria.
The project raised awareness through multilingual jingles and community campaigns, strengthened early case identification and referral pathways, conducted state-level advocacy visits, and trained frontline primary health care (PHC) workers to recognise early signs of noma and refer cases promptly. These efforts helped build readiness at community and health system levels. When global recognition arrived, Nigeria was therefore better positioned to act. The country’s response reflected both leadership and urgency. In partnership with the Noma Aid Nigeria Initiative (NANI) and the Federal Ministry of Health and Social Welfare, an 80-bed noma facility was established within the grounds of the National Hospital in Abuja.
The Centre functions as a comprehensive specialist centre, offering reconstructive surgery, nutritional rehabilitation, psychosocial support, and long-term follow-up care. This integrated approach reflects an understanding that harm caused by noma extends beyond physical injury to include social and emotional consequences. Beyond its clinical role, the Noma Centre is clear signal of political commitment, given the establishment of the Noma Centre. The Federal Ministry of Health and Social Welfare has prioritised noma, aligning it with national NTD strategies and embedding it within broader health planning frameworks.
Policy discussions are increasingly moving beyond treatment alone. There is growing recognition that noma screening should be integrated into the PHC system and linked with nutrition services, immunisation, community health, oral health, and hygiene promotion. This approach would shift detection from a reactive response to a routine part of healthcare. This direction aligns with WHO guidance on embedding noma prevention and care within PHC and universal health coverage (UHC). Nigeria’s Minister of State for Health and Social Welfare has reiterated this approach at National Noma Day commemorations, emphasising the importance of early detection and training for frontline health workers. Experience from Sokoto’s Noma Children’s Hospital also shows that a community-linked, PHC-connected model is feasible when clear referral pathways and social support mechanisms are in place.
The financing landscape for neglected tropical diseases is increasingly unstable. The WHO reports that official development assistance (ODA) for NTDs fell by 41% between 2018 and 2023, with significant disruptions during and following the COVID-19 period. These cuts are not abstract. WHO has warned that funding cuts are already disrupting mass drug administration campaigns, delaying impact surveys, and putting hard-won progress at risk. In several countries, reduced donor support is delaying campaigns and stalling planned medicine shipments. It also warns that disruptions could lead to the expiry of more than 55 million NTD tablets across Africa by the end of 2025. If funding does not recover, the momentum created by noma’s recognition as an NTD, along with progress across the wider NTD portfolio, risks stalling or being reversed.
A vision for Nigeria’s role and a path forward
Nigeria’s burden of noma, combined with emerging health system infrastructure and sustains civil society momentum, positions the country to play a leadership role in the global response. This leadership should be demonstrated through practical, replicable models that other countries can adapt across surveillance, referral pathways, financing, and survivor-centred care.
- Embed early detection into routine care.
- Position the Noma Centre as a training and referral hub
- Need to secure sustainable funding for prevention and care
Early detection should become a core function of primary healthcare. Nigeria should train PHC workers, including nurses, community health workers, and nutritionists, to recognise early signs of noma, especially in high-risk communities. Community-based strategies should leverage existing platforms such as child nutrition programmes, immunisation services, water, sanitation and hygiene (WASH) interventions, and oral health services. The Noma Centre should serve not only as a specialist treatment facility, but a training and mentorship hub supporting skills development for reconstructive surgery, rehabilitation, and community outreach. Referral networks should link primary health facilities and district hospitals to the Centre, ensuring access to care across the health system. Sustainable financing is non-negotiable. Nigeria must leverage noma’s inclusion on the WHO neglected tropical disease list to mobilise domestic resources and integrate noma services into routine health financing. A blended approach combining government budget lines, philanthropy, and catalytic donor support can anchor noma prevention and care within the health system.
- Survivor engagement and social healing are central
Survivors must be at the centre of the response as advocates, peer counsellors, and trusted voices in community education. Their lived experience should not just inform policy design but drive public awareness and help reduce stigma and delayed care-seeking.
5. Evidence must guide action. Ongoing research is needed to improve understanding of incidence and geographic hotspots, referral completion, time-to-treatment, access to surgery, and long-term psychosocial impact and outcomes. Civil society organisations, including Nigeria Health Watch, can continue to convene stakeholders, documenting lessons, testing new models, and sharing insights across borders.