One year after its inclusion on WHO’s list of Neglected Tropical Diseases – what should be done next to eliminate noma?

“The inclusion in the WHO’s list of NTDs is an important step, but not the final one. This recognition got noma and noma survivors the attention they deserve, but that attention needs to be maintained and translated in real measures to achieve its elimination. The global health community and donors must continue to prioritise treatment efforts and research to eventually see the end of noma worldwide,” says Mark Sherlock, MSF Health Programme Manager.

Noma is a preventable and treatable disease that primarily affects people living in poverty, especially young children, and is linked to malnutrition and unsanitary living conditions. The disease usually afflicts individuals in isolated communities with limited access to healthcare and vaccinations. It begins as gum inflammation but can rapidly escalate, destroying facial tissues and bones. Few other infectious diseases cause such rapid fatalities. Untreated, up to 90 per cent of those affected may die, often within a few weeks. The 10 per cent who survive are frequently left with severe facial disfigurement, impacting their ability to eat, speak, see, or breathe, and they often face stigma due to their appearance.

In 2020, MSF, together with other organisations, noma survivors and the Nigerian Ministry of Health, launched an international campaign to raise awareness about noma and add noma in the WHO NTDs list. After three years of intense advocacy and communication efforts and the engagement of 30 other nations, noma was officially added as the twenty-first disease on the WHO NTDs List. One year on, MSF continues to prioritise efforts tackling the disease

“MSF is focusing on three pillars. The first is to integrate noma screening and treatment in MSF projects around the world, enhancing early recognition and treatment of noma. We want children in endemic countries to be screened for noma at the first sign of symptoms when lives can still be saved. Secondly, MSF is calling for more research into the disease, specifically in the causes of noma and the global epidemiology. Finally, MSF is advocating for the global health community and donors to prioritise the disease and to ensure efforts are made to eventually eliminate noma globally,” adds Mark Sherlock.

The three-year campaign was largely led by noma survivors, who shared their experiences to convey a simple yet crucial message: noma is a preventable and treatable disease that should no longer exist.

“A year ago, noma was included in the WHO list of Neglected Tropical Diseases and this is the result of our collective efforts. We have done it together and I’m sure we can do more starting today. We can bring positive change to the lives of people affected by noma, the ones at risk, and their communities,” explains Mulikat Okanlawon, noma advocate and cofounder of Elysium, the first noma survivors’ association.

Since 2014, MSF has supported the Nigerian Ministry of Health’s Sokoto Noma Hospital in northwest Nigeria by providing reconstructive surgery, nutritional support, mental health services, and outreach activities. In these ten years, MSF's surgical team has performed 1,481 surgeries on 953 patients. MSF conducts specialised and free reconstructive surgeries for noma survivors every four months, targeting around 40 patients per surgical intervention with a team of international and national surgeons and anaesthetists.

A year ago, the global community made an important step to bring noma more public attention to help vulnerable communities who are affected by the disease – progress must not stop there. With continued efforts into the early detection and treatment of the disease, along with more funding for global research, noma could be eliminated.

Médecins Sans Frontières/Doctors Without Borders (MSF) is an international, independent, medical humanitarian organisation that delivers emergency aid to people affected by armed conflict, epidemics, natural disasters, and exclusion from healthcare. MSF has been working in Nigeria since 1996 and currently provides healthcare services free of charge in 10 states across the country.