The Campaign to Recognize Noma as an NTD: How Inclusion Can Drive Research to Prevent and Treat the Disease




Amina, an 18-year-old noma patient from Yobe state, has been disfigured since early childhood, and has a habit, like many noma survivors, of hiding her scars behind a veil.

A milestone World Health Organization (WHO) decision to recognise noma (cancrum oris or gangrenous stomatitis) as a neglected tropical disease (NTD) is the result of a longstanding campaign waged for over a decade by global health researchers and advocates in Geneva and beyond. Proponents believe that inclusion can offer noma’s victims the hope of new investments and eventually treatments for one of the world’s least understood diseases.

The WHO decision in December 2023, came shortly ahead of the fifth annual World NTD Day, observed on Tuesday (30 January).

Noma is a severe gangrene disease in the oral and facial regions that predominantly afflicts undernourished young children, typically between the ages of two and six, usually residing in areas marked by extreme poverty. It starts as inflammation of the gums but progresses rapidly, damaging facial tissues and bones if not promptly addressed.

Some 140,000 people – most in sub-Saharan Africa – are diagnosed with the disease a year, according to Dr Maria Guevara, International Medical Secretary for Médecins Sans Frontières (MSF), speaking at a May 2022 event on the margins of the World Health Assembly. The disease currently has a 90% fatality rate, she said. It is most prevalent in West Africa, parts of Central Africa and Sudan, although there are also cases in Asia and South America.

What explicitly causes noma is still unknown, but doctors believe it is the result of a bacterial infection that attacks children who have weakened immune systems as the result of a previous illness, such as measles or tuberculosis.

“Noma’s inclusion on the NTD list is the result of a campaign that has lasted over 10 years,” according to Dr Eric Comte, director of the Geneva Health Forum, which has been active in promoting awareness around the disease over the past months and years. “Several organisations and personalities were involved in this campaign.”

International Society for Neglected Tropical Diseases (ISNTD) and MSF hosted a Geneva Press Club event in May 2023, coinciding with the 76th World Health Assembly, to advocate for its inclusion and helped facilitate networking amongst noma stakeholders.

Noma recognition: impact

The WHO decision was lauded by these stakeholders, who now have very high expectations that the move could lead to several benefits and significant changes in visibility and awareness.

The inclusion on the NTD list “can stimulate research on the disease, particularly on its causes, treatment, and prevention, as researchers may be more inclined to focus on disease recognised by the WHO,” explained Marlyse Morard, director of Sentinelles, a Lausanne-based NGO fighting noma in the field. “The allocation of financial resources is likely to increase.”

Morard said they also expected improvement in prevention and control, mainly through training healthcare staff and epidemiological surveillance.

“Large-scale public awareness campaigns remain essential, as early detection of the disease reduces its impact and saves lives,” she said.

“The creation of awareness programs requires meticulous planning to ensure that they are effective. Improved coordination between public and private stakeholders is crucial, especially when it comes to fighting diseases like noma, which can lead to the stigmatisation of affected people.

“Awareness-raising is a powerful tool to promote a better understanding of the disease,” she continued. “Also, a disease recognised by WHO as a neglected tropical disease can benefit from increased political commitment and the creation of national disease control programs for countries that do not have them.”

She said the expectation included facilitated access to healthcare and reconstructive surgery, as well.

An individual with Noma
An individual with Noma

Noma challenges ahead

However, Morard noted that it was unlikely that these expectations would be met too quickly, as they would depend on each country’s legislation and their commitment to international guidelines.

“It is important to note that the fight against noma is complex and requires the long-term commitment of multiple stakeholders, including affected communities, governments, non-governmental organisations, political and religious leaders and international health agencies,” she said.

Comte expressed similar sentiments, noting that including noma on the NTD “is good news, but it is only a first step. We must now mobilise to establish an action plan and a roadmap against noma through collaborations between WHO Geneva, WHO Afro, the ministries of health of the countries concerned and civil society, which implements actions on the ground.”

WHO has said that there are multiple risk factors associated with this disease, including:

  • poor oral hygiene;
  • malnutrition;
  • weakened immune systems;
  • infections;
  • and extreme poverty.

Although the disease is not contagious, it tends to strike people when their body’s defences are down.

To help halt noma, countries need to run early detection programs for gingivitis, facilitate access to vaccinations, strengthen their clean drinking water systems, improve sanitary facilities, and enhance food support programs, Morard said.

Treatment generally involves antibiotics, improving oral hygiene with disinfectant mouthwash and nutritional supplements.

“If diagnosed during the early stages of the disease, treatment can lead to proper wound healing without long-term consequences,” Morard said.

Survivors face severe social impact

“In severe cases, though, surgery may be necessary. Children who survive the gangrenous stage of the disease are likely to suffer severe facial disfigurement, have difficulty eating and speaking, face social stigma and isolation, and need reconstructive surgery.”

Noma survivor Mulikat Okanlawon, an advocate and hygiene officer at the Noma Hospital in Sokoto, Nigeria, described the effects of noma on her life as follows: “I recovered from the disease, but it left a deadly mark on my face, which stopped me from interacting with people and being a part of the community. I could not go out. I could not go anywhere. I could not even look at myself in the mirror like other children.”

“I always cried… I often wished that I had not survived,” she added, speaking at one recent global health event.

Morard said, “It is truly tragic that noma continues to exist because it is a preventable and treatable disease. Those most severely affected will bear the burden for their entire lives due to late diagnoses or inadequate treatments. The persistence of noma serves as a poignant reminder of health inequalities around the world and underscores the importance of collective action to combat diseases linked, among other factors, to poverty.”

Eradicating noma, she continued, “represents a true challenge and requires strong willpower.”

Mulikat, a 33-year-old former patient originally from the south of Nigeria, moved to Sokoto 17 years ago to undergo facial reconstructive surgery. 

Recent NTD achievements

There have been successes. For example, Sentinelles, Morard’s organisation, has been operating in Niger for the past 30 years, including running awareness-raising activities in coordination with the National Noma Control Program and health authorities. Working with local hospitals has helped ensure noma patients to access reconstructive surgery. Sentinelles also provides support and training for residents and medical staff, which has helped prevent the disease.

Some 1.34% of children aged 1-6 in Niger developed noma – some seven to 14 cases for every 10,000 children aged 0-6, according to an article published in the peer-reviewed journal Health in April 2023. The scientists said this was higher than the incidence of the whole sub-Saharan region.

Last week, at the WHO Executive Board meeting, a representative of the WHO Africa region shared some NTD successes in general, noting that between 2021 and 2023, 10 countries were certified to have eliminated at least one NTD: Lymphatic filariasis (elephantiasis) was eliminated Moreover, some 42 countries have been certified free of guinea worm disease.

WHO’s Dr Jérôme Salomon (center) provides an update on NTDs, including noma’s inclusion in the WHO list, at the WHO Executive Board meeting 22-28 January.

Noma was the first disease to be added to the WHO NTD list in over five years. Scabies and snakebite envenoming were added in 2017. There are currently 21 diseases or groups on the WHO NTD list.

At the Executive Board meeting, WHO Director-General Tedros Adhanom Ghebreyesus updated the delegates on the progress since the WHA73(33) road map for neglected tropical diseases was adopted at the World Health Assembly in November 2020. He shared the following statistics:

  • There was a 25% reduction in people requiring interventions against neglected tropical diseases between 2010 and 2021.
  • The Southeast Asian region had the highest proportion of people requiring intervention against NTDs in 2021 at 52%, followed by the African region (35%). All other areas made up less than 5%.
  • Some 14.5 million disability-adjusted life years were lost to NTDs in 2019, compared to 16.3 million in 2015.

However, the report showed that NTD programs were “severely impacted” by the COVID-19 pandemic and have not yet recovered.

“Much remains to be done to overcome the devastating impact caused by a restriction of movement, disrupted supplies of medicines and other health products, and repurposing of health staff in response to the pandemic,” the report said. “Today, financial support is still far less than before the pandemic and remains limited at all levels, thus jeopardising activities in countries, hampering meaningful planning, and preventing effective coordination at global and regional levels.”

A Global Health Council NGO representative responded to the report by highlighting the inextricable ties between poverty and inequality and NTDs. The representative also noted significant gaps in research and development tools needed to control and eliminate these diseases.

“We call on member states to sustain and expand investments to accelerate R&D of safe and affordable treatments for NTDs and improved diagnostics, particularly for NTDs with specific unmet needs for use in primary health care settings,” the representative said. “We urge WHO member states to collaborate to explore regulatory and manufacturing pathways to facilitate simultaneous or aligned pre-qualification and regulatory approval processes of in vitro diagnostics to accelerate market access.”

Germany, too, emphasized R&D, while Russia focused on the need for increased surveillance.

Others, such as the United States, urged WHO “to undertake the necessary internal reforms to strengthen the functions and operations of the program to support member states in reaching NTD goals, including by reinforcing WHO leadership through accountability, transparency, predictability and equity; filling normative gaps; and ensuring strong data systems enabling reliable surveillance, monitoring and evaluation.

“We also call for well-aligned leadership within the WHO neglected tropical diseases department with the ability to work effectively across sectors,” the US representative said.

Image Credits: Claire Jeantet – Fabrice Catérini / Inediz’, Wikimedia Commons.

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