The neglected of the neglected: tackling noma

In Nigeria, between 2010-2018 the national incidence of noma was noted at between 4.1 to 17.9 per 100,0000 people. Cases have been frequently reported in other countries in the Sahel as well as in Laos and Haiti. But few studies are available on noma’s prevalence and the figures that are available are likely underestimates, Kamran Rafiq, co-founder and communications director of The International Society for Neglected Tropical Diseases, said. 

The rapid progression and high-mortality rate combined with beliefs that such an ailment could be a divine punishment, preventing families from seeking treatment, affects what’s known about noma’s prevalence. 

Awareness raising can help. 

Okanlawon, in her role as a hygiene officer at Médecins Sans Frontières, said she sees 10 fresh cases of noma per month on average at the Noma Children Hospital, which is run by the Ministry of Health and has been supported by MSF since 2014. The 92-bed hospital is the only one dedicated to noma in Nigeria. The reason she sees so many is in part because of the hospital’s outreach team, she said, which disseminates prevention messaging and conducts active case finding. 

“We try to make everyone, including health providers, know what noma is, how it presents and starts and what should someone do if they see a patient with noma,” explained Dr. Isah Shafiu, chairman of the medical advisory committee at the hospital. Any patients diagnosed by the outreach team or other in-country MSF factions are referred to Sokoto for free care.

If the patient doesn’t want to travel, antibiotics and nutrition treatment are provided in the hope that they’ll consider coming for a reconstructive surgery at a later date, Dr. Bukola Oluyide, deputy medical coordinator at MSF in Nigeria, said.

At the hospital, more testing and treatment for any comorbidities — including sepsis, dehydration, and malnutrition — takes place before there’s an assessment for reconstructive surgery. When overseas surgical teams who visit quarterly arrive, usually around 30 patients await a procedure. Oftentimes multiple surgeries and physiotherapy is needed across several years.

In 2019, teams performed 178 surgeries on 129 patients. In 2020, surgeries were more than halved as a result of COVID-19, but have since resumed with in-country surgeons taking the lead.

Okanlawon explained that surgery helps to tackle the stigma surrounding facial disfigurement; she herself has undergone several operations. “Nobody wanted to see me before the operation … If I was coming, they’d all run,” she said. But post-op, that all changed. “I’m a new person now. I’m a new Mulikat,” she said, adding that these days people are happy to see her.

Following her surgery, the hospital hired Okanlawon to share her experiences as part of pre- and post-surgery psychosocial support. “Any patients who see me will know when there is life there is hope,” she said.

While efforts like that of Okanlawon and Sokoto’s Noma Children Hospital are a good example of the work being done to prevent and treat noma, such examples are rare. The fact that many have never heard of noma means attention, funding, and resources are limited.

At February's noma conference, many called for the World Health Organization to recognize noma as a neglected tropical disease in its 2023 review process.

While included in the PLOS Medicine NTD list and targeted in WHO’s Africa regional program and WHO’s Oral Health Program, it’s thought noma’s adoption to WHO’s NTD list — of which 20 diseases are listed — would mean increased resources.

“From an advocacy perspective, it’d be awesome to be on that list,” Rafiq said, and from a finance perspective, it could trigger a funding cascade for research. “The mad thing about noma is this is a totally preventable disease so can you imagine the win-win scenario at the end if someone was trying to get involved in this from a financial perspective,” Rafiq said. 

To qualify, a disease must disproportionately cause stigma, morbidity, and mortality among impoverished populations; primarily be found in tropical and sub-tropical areas, be amenable to control, elimination, or eradication through one of five public health strategies; and have limited research available. Multiple WHO member states must submit a request for inclusion with a dossier of supporting evidence. 

The evidence poses a barrier for noma.

A lack of high-quality and comprehensive research and “substantial gaps in knowledge” may hinder and delay the development and submission of a dossier, Dr. Yuka Makino, technical officer of oral health at WHO’s regional office for Africa, told Devex. She suggested the noma community prioritize documentation of its burden, and the delineation of effective strategies and interventions before 2023. 

According to experts — who, in 2019, ahead of the WHO’s consultation process for the launch of the new NTD roadmap, asked for the assessment of progress on noma — this is “problematic.” 

“If a disease is so neglected that it receives limited funding and consequently little research is conducted, how can evidence be provided to prove that it is neglected?” they asked. “There’s a paradox: no funds, no epidemiology. No epidemiology, no funds,” Rafiq said. “It’s about making that case.” In order to do that, more funding is required and more funding comes through increased awareness.

While increased research should be a priority, interviewees agreed that being on the NTD list wouldn’t be the silver bullet anyway.

For Oluyide, the NTD recognition is a long-term ambition and there are things that can be done in the meantime. 

“Policies that ensure food security is high, health facilities are available, nutritional services are available even at the grassroots level, and then awareness for people to come to these services would go a very long way in ensuring children don’t develop noma at all,” she said. This is even more paramount given the strain on resources posed by COVID-19 as well as the ongoing violence and insecurity exacerbating basic needs in the north of Nigeria. 

Including noma in the training curriculum for health workers would also enable them to conduct screenings in local facilities and treat noma at an earlier stage, Oluyide said. 

For Rafiq, the game changer will be in bringing different expertise to look at noma through perspectives such as WASH, technology, and other related health issues. This could offer some more solutions, he said.

Okanlawon called for continued financial support for the hospital and for the international community to continue raising awareness of noma. “I want them to put more effort into supporting us,” she said.

Photos/captions: Claire Jeantet / Fabrice Catérini / Chloe Fournier / Inediz
Production: Janelle Cruz