WHO finally recognizes noma as a neglected tropical disease

FWhen idel Strub was three years old, his face began to rot. “This is hell. It's like your face is burning,” he told me. “You can't even open your eyes because it's so bad. It's just burning.

No one in his village in the West African country of Burkina Faso knew what happened to him. His grandmother walked him nearly 200 miles to a clinic for evaluation, and he said doctors gave him “absolutely no hope” of survival. Last summer, I had the opportunity to talk with Strub and several others and learn more about the little-known disease gangrenous stomatitis.

Gangrenous stomatitis, often called the “face of poverty,” is a form of gangrene of the face and jaw that primarily affects low-income, malnourished children. Although much is still unknown, gangrenous stomatitis may begin with inflammation of the gums. If left untreated, it can progress to rapid destruction of facial structures such as the nose, lips, and eyes, and can lead to death in up to 90 percent of those affected. A weakened immune system means the face of a person with gangrenous stomatitis can rot like a corpse. The resulting facial deformity can lead to lifelong problems, including drooling and difficulty eating.

Still, researchers don't know the exact cause of gangrenous stomatitis—not all malnourished people experience this necrosis. Is there a genetic component? One theory is that recent measles infections predispose children to gangrenous stomatitis, but we just don't know. Eventually, however, that may change.

In 1998, the World Health Organization estimated that 140,000 people suffer from gangrenous stomatitis each year. This is the last update on the incidence of gangrenous stomatitis, and there are no preliminary studies on the prevalence of gangrenous stomatitis. The fact that gangrenous stomatitis occurs in remote villages makes it difficult for researchers to assess the true number of gangrenous stomatitis. One current estimate suggests that there are 30,000-40,000 new cases globally each year; Nigeria is a high-burden country for the disease, with 17.9 people per 100,000 people likely to be affected in one area of ​​the region. That said, we don't really know how many cases of gangrenous stomatitis there are, or whether it's becoming more common.Currently, all of us able Food insecurity, exacerbated by climate change and farmland unrest, is said to be a key risk factor for the disease in areas where gangrenous stomatitis is known to occur.

Melissa Amundson is a maxillofacial trauma surgeon and experienced humanitarian worker with Doctors Without Borders who has been volunteering at Noma Hospital in Sokoto, Nigeria since 2016 . These children are severely ill and often do not survive long enough to undergo reconstructive surgery.

However, Strub did survive, as did Mulikat Okanlawon, and the two founded the Elysian Norma Survivors Association in 2022. , famous for the acclaimed Norma documentary Restoring Dignity. Together, the trio championed survivors and advocated for gangrenous stomatitis to be included on the World Health Organization's elusive list of neglected tropical diseases.

The World Health Organization long refused to list gangrenous stomatitis as a neglected tropical disease (NTD), finally recommending its inclusion on the list at a closed-door meeting in October 2023. Stomatitis is the 21st neglected tropical disease. The new name is the result of a collaborative effort in more than 30 countries and countless advocates, such as the founders of Elysium, who have been advocating for gangrenous stomatitis for years.

But officially adopted to this list alone No solution was given. Instead, we must now engage in a unified campaign to eradicate gangrenous stomatitis. We need epidemiologists looking for cases not just in sub-Saharan Africa but around the world. We need microbiologists to study the causes of gangrenous stomatitis. We need dentists and oral pathologists to train local people on how to recognize gangrenous stomatitis in its early stages. We need support from biotech, pharmaceuticals and researchers.

The WHO's intransigence also raises a key question: What took so long?

Gangrenous stomatitis meets all the criteria for being considered a neglected tropical disease: it primarily affects extremely poor people living in tropical and subtropical regions, causes stigmatizing disfigurement, can be eliminated through public health measures, and is subject to research Adverse marginalization and neglect of personnel. However, just last year, the World Health Organization chose to pause adding new neglected tropical diseases to the list, pending further information. The committee that oversees such decisions, the Strategic and Technical Advisory Group on Neglected Tropical Diseases (STAG-NTD), issued a statement in January 2023 agreeing that while it “appreciates the neglect of gangrenous stomatitis,” it would not classify gangrenous stomatitis as Added to list at that time.

One possible reason for this persistence is that gangrenous stomatitis began as a dental disease, which has long been an underrecognized global health problem. NTD researchers also suggest that adding new diseases to the NTD list could draw attention and resources away from existing NTDs.

Health is health. If oral diseases pose a fatal risk to people, then these diseases are not inherently more important than “medical” conditions. In fact, growing evidence even shows how dental disease affects overall health.

However, not a single dentist participates in STAG-NTD. Considering the adoption of noma, this situation must change. Enough medical and dental politics has led to the neglect of gangrenous stomatitis. For years, researchers have recommended implementing simple dental interventions, such as checking children's mouths during vaccination campaigns or giving them antibacterial mouthwash; but these were implemented by staff who had already completed multiple screenings in a short period of time. Action is not always prioritized.

Jane Tait, former gangrenous stomatitis campaign manager for Médecins Sans Frontières, believes that “perceiving gangrenous stomatitis as an African disease” further hinders public awareness and action. She is very clear: “Gangrenous stomatitis is not an African disease.” Gangrenous stomatitis occurs sporadically in malnourished, immunosuppressed patients around the world. Between 2000 and 2019, cases were reported outside the “gangrenous stomatitis belt” in many parts of South America, Europe and Asia. For example, in 2011, a 43-year-old man was admitted to the emergency department in London after gangrenous stomatitis attacked his face.Despite the global distribution of this disease, many dental schools should all Teach gangrenous stomatitis, don't. Ask your dentist if you have ever heard of gangrenous stomatitis.

As a dental student, I was lucky: I learned about gangrenous stomatitis in my first year, despite only seeing a few slides in a lecture on opportunistic infections. I had only heard of this disease through my experience with Amundsen, whose work as a maxillofacial surgeon for Doctors Without Borders I greatly admired. Knowing that gangrenous stomatitis occurs unnecessarily and represents some of the world's most vulnerable and overlooked populations, I felt motivated to find ways to raise public awareness. I am currently working with epidemiologist Elise Farley, one of the few researchers who has published extensively on gangrenous stomatitis, to create historical gangrenous stomatitis cases An instant map of the global distribution gives researchers and doctors in the field a way to update the cases they are seeing in gangrenous stomatitis.

Pervasive neglect of gangrenous stomatitis at all levels of the medical community endangers patients who do not meet the typical manifestations of gangrenous stomatitis, wasting valuable medical resources and prolonging their suffering. Jeantet noted that even the tropical medicine experts she worked with had “never heard of gangrenous stomatitis.”

Gangrenous stomatitis is a 100% preventable disease. In the early stages, simple antibiotics can cure the disease and halt its progression. Children who develop gangrenous stomatitis and die largely do so because they don't have enough food to eat. The survivors bear the scars for life because the world has decided not to care – one of the reasons it has been labeled a human rights violation. There are many more similar lesser-known dental diseases. Oral mutilation in infants, for example, can lead to death and may even lead to gangrenous stomatitis—but it's probably even less well-known than gangrenous stomatitis.

Let noma be the template Unite Medical dental movement. Research shows that treating oral disease can prevent systemic disease, and early gangrenous stomatitis often resembles severe gingivitis. We can stop this disease before it becomes disfiguring. We can even prevent this disease from occurring. Like smallpox, together we can eliminate gangrenous stomatitis.

John Button is a Doctor of Dental Medicine and Master of Science in Oral and Population Health student at the University of Pennsylvania School of Dentistry in Philadelphia.He is also an advisory board member of the International NOMA Network.

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