A year after noma was included in the World Health Organization (WHO)’s list of neglected tropical diseases, Doctors Without Borders/Médecins Sans Frontières (MSF) continues working to encourage early detection and treatment to save more lives from this deadly disease.
“The inclusion [of noma] in WHO’s list of neglected tropical diseases is an important step, but not the final one,” says Mark Sherlock, MSF health program manager. “This recognition got noma and noma survivors the attention they deserve, but that attention needs to be maintained and translated into real measures to achieve its elimination. The global health community and donors must continue to prioritize treatment efforts and research to eventually see the end of noma worldwide.”
What is noma?
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 people in isolated communities with limited access to health care and vaccinations. It begins as gum inflammation but can rapidly escalate, destroying facial tissue and bones. Few other infectious diseases cause such rapid fatalities. When untreated, up to 90 percent of those affected may die, often within a few weeks. The 10 percent 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.
Raising awareness about noma
In 2020, MSF, together with other organizations, noma survivors and Nigeria’s Ministry of Health, launched an international campaign to raise awareness about noma and add it to WHO’s list of neglected tropical diseases. 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 list. One year on, MSF continues to prioritize efforts tackling the disease.
“MSF is focusing on three pillars,” explains Sherlock. “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 prioritize the disease and ensure efforts are made to eventually eliminate noma globally.”
Noma survivors lead campaign
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,” says Mulikat Okanlawon, a noma advocate and cofounder of Elysium, the first noma survivors’ association. “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.”
Since 2014, MSF has supported the Nigerian Ministry of Health’s Sokoto Noma Hospital in northwestern Nigeria by providing reconstructive surgery, nutritional support, mental health services, and outreach activities. In these 10 years, MSF's surgical team has performed 1,481 surgeries on 953 patients. MSF conducts specialized 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 anesthetists.
Missing Maps: Tackling noma and malnutrition in Sokoto, Nigeria
Read moreA 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 in the early detection and treatment of the disease, along with more funding for global research, noma can be eliminated.