Noma is Officially Recognized as a Neglected Tropical Disease by the World Health Organization

In Geneva on December 15th 2023, the World Health Organization (WHO) announced the inclusion of noma on its official list of Neglected Tropical Diseases (NTDs).

Noma is a disease of poverty and malnutrition believed to affect up to 140,000 young children between two and six years of age each year, primarily within Africa. But what is seen of the disease does not tell the whole story. Up to 90% of the young children that become ill with noma die, often of a combination of septicemia (when the infection reaches the dura mater), dehydration and malnutrition. For the remaining 10 percent of children that survive, challenges with feeding/eating, speaking and even breathing, are common. Noma may also affect the eyes, and all children with advanced disease are left with facial disfigurement. Recovery from noma is usually a life-long process involving complex and multiple surgeries and specialized care to reconstruct damage to the oral cavity and face as well as therapy and dentistry to enable children to eat and speak.

Due to the disfigurement that noma causes, survivors often face pervasive stigma and isolation that can delay seeking initial medical diagnosis and treatment, and can prevent the equal enjoyment of their education, health, social and economic rights throughout their lives.

Noma is a devastating disease, however it can be prevented. One campaign called ‘know noma’ by the Zero Noma group focuses on educating communities to promote preventative measures such as good oral care, nutrition, and childhood vaccinations, along with being able to recognize the early signs of the disease and how to seek treated before the disease progresses. Rapid access to antibiotic treatment is life-saving care, and can prevent permanent disability and disfigurement.

Canada was one of the 32 co-sponsoring states to support the Nigerian Dossier to include noma on the official WHO list of NTDs. In Canada, advocacy efforts by the Noma Action Group (NAG), and  Médecins Sans Frontières (MSF) Canada have been key to rallying for Canadian support to this campaign, urging parliamentarians to sponsor noma as an NTD, and for laying the groundwork to influence policy makers around the world to do the same. The NAG reaction to the decision to include noma as an NTD,

“This decision is a monumental milestone in noma activism, and will have an enormous impact on the future global public health landscape to control and eradicate noma.”

One of the unique aspects of the campaign to officially recognize noma as an NTD by the WHO, has been the activism of noma survivors through the first noma survivor’s association, Elysium. Their visibility and voice has been critical to understanding the experience of living with noma and ensuring that noma is seen and understood not only as a life-altering disease, but also as a preventable, treatable disease that no child should die from.

MSF Canada’s reaction to the WHO’s decision

“inclusion is crucial, but not the final step. Let’s work together to integrate noma screening into existing programs, ensuring early detection and prompt treatment”.

Children can and should be protected from the devastating consequences of noma, and its inclusion on the WHO list of NTDs is one vital step towards ensuring communities at risk know noma, and experience noma no more.

Please find the WHO’s news release on officially recognizing noma as an NTD here. Below is a list of some of the organizations involved in the campaign to officially recognize noma as an NTD:

  1. Noma Action Group
  2. MSF Canada
  3. Elysium
  4. Zero Noma
  5. ISNTD