Dear HIFA and CHIFA colleagues,
I learned today (thanks to Global Health Now) that noma is a neglected-neglected tropical disease. That is, it is not recognised as a neglected tropical disease, despite fulfilling the criteria for the same.
Noma is a devastating disease that can cause gross disfigurement of the face. A WHO Africa publication notes:
- Noma starts as a lesion (a sore) of the gums, inside the mouth. The initial gum lesion then develops into an ulcerative, necrotizing gingivitis that progresses rapidly, destroying the soft tissues and bones of the mouth and further progressing to perforate the hard tissues and skin of the face. The sores are painful and there is associated halitosis
- In the absence of any form of treatment, noma is fatal in 90% of cases. Where noma is detected early, its progression can be rapidly halted, either through basic hygiene rules or with antibiotics. Such early detection helps to prevent suffering, disability and death.
- It mostly affects young children between the ages of 2 and 6 years suffering from malnutrition, living in extreme poverty and with weakened immune systems. Noma is often described as “the face of poverty”.
- Owing to the rapid progression of the disease and the high mortality rate associated with its acute phase, numerous cases of noma remain undetected.
Misconceptions and stigma lead to further suffering:
- noma is not transmitted from one person to another; noma is not a contagious disease
- noma is not caused by witchcraft or a curse on the child’s parents.
It seems that noma survivors and noma health workers have been trying to get noma recognised as an NTD, so that more resources can be mobilised to reduce the suffering. Why isn't noma recognised as an NTD?
I did a bit of googling and found an article from 2020 article that states: 'Why is noma neglected?... The omission of noma from lists of NTDs results in international neglect due to lack of awareness and knowledge. Noma is noncommunicable, so it does not cause the alarms of contagious diseases or threaten developed countries. Further, noma is not a target for pharmaceutical companies, because the acute phase can be treated with inexpensive antibiotics.'
The implication is that the commercial interest (or otherwise) of big pharma is a factor in whether a disease is classified as an NTD. Is there any evidence for this?
Dr Neil Pakenham-Walsh, HIFA Coordinator
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