The WHO recognizes noma after years of medical-dental disconnect

Fidel Strub was 3 years old when his face began rotting away. “It’s hell. It’s like you have a burning face,” he told me. “You can’t even open your eyes because it’s just that bad. It’s just burning.”

No one in his village in the West African country of Burkina Faso knew what was happening to him. His grandmother took him almost 200 miles for evaluation at a clinic, where, he said, the doctor “had absolutely no hope” that he would survive. This past summer, I had the chance to speak with Strub and several others to learn more about the little-known disease noma.

Noma, often labeled “the face of poverty,” is a gangrene of the face and jaw that predominately ravages low-income, malnourished children. While much is still unknown, noma may begin as inflamed gums. If left untreated it can evolve into a rapidly progressing destruction of facial structures such as the nose, lips, and eyes, and may kill up to 90% of those affected. Weakened immune systems mean the faces of noma victims decompose like corpses. The resultant facial deformities cause lifelong problems including drooling and difficulty eating.

Still, researchers don’t know what exactly causes noma — not everyone who is malnourished experiences this necrosis. Is there a genetic component? One theory is that a recent measles infection predisposes a child to develop noma, but we just don’t know. Finally, however, that might be changing.

In 1998, the World Health Organization estimated that 140,000 people develop noma each year. This was the last time it updated noma’s incidence, and there are no primary studies on noma’s prevalence. The fact that noma occurs in remote villages makes it extremely difficult for researchers to assess noma’s true numbers. One current estimate suggests there are 30,000-40,000 new cases per year globally; in one region of Nigeria, a country with a high burden of this disease, it may affect 17.9 people per 100,000. That is to say, we don’t really know how many cases of noma are out there or if it’s becoming more widespread. For now, all we can say is that in areas where noma is known to occur, climate change and civil unrest over farming land have increased food insecurity, a key risk factor for the disease.

Melissa Amundson, a maxillofacial trauma surgeon and seasoned humanitarian worker with Médecins Sans Frontières, has been volunteering at the Noma Hospital in Sokoto, Nigeria since 2016. Upon arriving at the hospital, many of her would-be patients are septic and so undernourished, she described to me how “you can … fit your index finger and thumb around their thighs.” These children are sick to the point where they often don’t survive long enough to undergo reconstructive surgery.

Strub, however, did survive, as did Mulikat Okanlawon, the two founding Elysium Noma Survivors Association in 2022. Also part of Elysium is Claire Jeantet, a visual journalist known for the renowned noma documentary “Restoring Dignity.” Together, the three have been supporting survivors and advocating for noma’s adoption onto the WHO’s elusive neglected tropical diseases list.

The WHO long refused to adopt noma as a neglected tropical disease (NTD), finally recommending its inclusion to the list during a closed-door meeting in October 2023. On Friday, the WHO officially announced noma as the 21st NTD. The new designation is the work of more than 30 countries and countless advocates, like Elysium’s founders, who spent years advocating for noma.

But formal adoption onto this list alone does not spell a solution. Rather, we must now embark on a unified campaign to end noma. We need epidemiologists scouring not just sub-Saharan Africa, but the world, for cases. We need microbiologists investigating noma’s etiology. We need dentists and oral pathologists training locals on how to recognize early noma. And we need support from biotech, pharma, and researchers.

The WHO’s intransigence also raises a crucial question: What took so long?

Noma fits all the criteria to be considered a neglected tropical disease: the disease predominately affects populations living in extreme poverty in tropical and subtropical areas, causes stigmatizing disfigurement, could be eliminated via public health measures, and has suffered detrimental peripheralization and neglect by researchers. Yet the WHO, just last year, chose to uphold a moratorium on adding new NTDs to the list pending further information. The committee which oversees such decisions, the Strategic and Technical Advisory Group for Neglected Tropical Diseases (STAG-NTD), released a statement in January 2023 agreeing that while it “appreciated that noma is neglected,” it would not be adding noma to the list at that time.

One possible reason for this obduracy is that noma begins as a dental disease, and dental diseases have long been underappreciated global health concerns. It has also been suggested by NTD researchers that adding new diseases to the NTD list could pull focus and resources from existing NTDs.

Health is health. If oral diseases pose mortal danger to populations, those diseases are not inherently less important than “medical” conditions. In fact, growing evidence even demonstrates how dental diseases affect overall health.

Nevertheless, not a single dentist sits on STAG-NTD. Considering noma’s adoption, that must change. Enough medical and dental politics have contributed to noma’s neglect. For years, researchers have suggested implementing simple dental interventions, like looking in a child’s mouth during a vaccination campaign or giving them antiseptic mouthwash; but these actions, by workers already stretched to complete multiple screenings in short appointments, are not always prioritized.

For Jeantet, the former noma campaign manager for Médecins Sans Frontières, “the stigmatization of noma as an African disease” further hinders public awareness and action. She was quite clear: “Noma is not an African disease.” Noma occurs sporadically throughout the world in malnourished, immunosuppressed patients. Between 2000 and 2019, cases reported outside the “noma belt” spanned South America, Europe, and many parts of Asia. For instance, in 2011, a 43-year-old man presented to an emergency room in London with a three-month history of noma eating away his face. Despite the disease’s global distribution, many dental schools, which should all teach on noma, don’t. Ask your dentist if they have ever even heard of noma.

As a dental student, I was lucky: I learned about noma in my first year, although across just a few slides during a lecture on opportunistic infections. I had heard about the disease previously only from being in contact with Amundson, whose work as a maxillofacial surgeon with MSF I greatly admire. Learning that noma occurs needlessly, exemplifying the world’s most vulnerable and neglected populations, I felt motivated to find ways to contribute to public awareness. I am currently working with epidemiologist Elise Farley, one of the few researchers who has published extensively on noma, to create a living map of the global distribution of historical noma cases with a way for researchers and doctors in the field to update cases they see in real time.

The pervasive ignorance of noma that persists at all levels of the medical community endangers patients who do not fit the typical noma presentation, wasting precious health care resources and prolonging their suffering. Jeantet noted even tropical medicine specialists with whom she worked “had never heard about noma.”

Noma is a 100% preventable disease. In early stages, simple antibiotics can cure the disease and stop its progression. The children who suffer and die from noma do so largely because they do not have enough food to eat. Survivors bear lifelong scars because the world has decided it doesn’t care — one of the reasons it has been labeled a human rights violation. And there are more little-known dental afflictions like it. Infant oral mutilation, for one, leads to death and could even cause noma — yet it’s probably even less known than noma is.

Let noma serve as the template for unified medical-dental campaigns. Research shows treating oral diseases prevents systemic ones and early-stage noma often resembles severe gingivitis. We can stop this disease before it progresses to disfigurement. We can prevent this disease from even taking hold. Like smallpox, together, we can eradicate noma.

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 Dental Medicine in Philadelphia. He also sits on the advisory committee of the International Noma Network.