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Health promotion officer and noma survivor Mulikat Okanlawon.<\/p>\n
\u00a9 Fabrice Caterini – Inediz<\/p>\n
At the age of six, Mulikat Okanlawon was living with her grandparents in a village in Nigeria\u2019s Ogun State. She remembers, \u201cMy living conditions at that time were so bad; life then was difficult.\u201d <\/p>\n
Her family noticed that something wasn\u2019t quite right with her, but it wasn\u2019t exactly clear what that was. Her face started to swell, and her body was hot all the time. \u201cNobody understood what happened, even my parents. Everybody thought it was normal malaria\u2026my grandparents tried what they could, but they couldn\u2019t stop it.\u201d <\/p>\n
The left side of her face began to look dramatically different to the right side. One day, at a bus stop, a man spotted her face and put a name to what had happened to her: noma. Okanlawon was then treated in hospitals in Lagos and eventually in a specialist noma hospital in Sokoto, in northern Nigeria.<\/p>\n
It was in Sokoto that Okanlawon really came to understand what noma was. Seeing other people affected by noma \u201cmade me comfortable because before I thought I was the only one with it.\u201d She had three reconstructive surgeries, but that wasn\u2019t the end of her time at the noma hospital. For doctors there took note of Okanlawon\u2019s English and communication skills. She became the first noma survivor to stay at the hospital after treatment and work there, helping others during their noma treatment. Okanlawon also cofounded the first association of noma survivors, Elysium<\/a>, in 2022. <\/p>\n Noma is a gangrenous infection affecting the mouth and face. It can develop very quickly and devastatingly<\/a>. \u201cWhat is commonly said is that up to 90% of the people will die in just a few weeks,\u201d explains Claire Jeantet, a filmmaker<\/a> and former noma campaign manager for M\u00e9decins sans fronti\u00e8res (MSF, or Doctors Without Borders). Broad-spectrum antibiotics can help early on, though it can be difficult for family members to initially recognize the severity of the problem, or to amass the money to seek out treatment.<\/p>\n If the person with noma survives to stage 3, the damage done is irreversible and the person is disfigured. Treatment at this stage can help with aspects like wound dressing and nutrition. By stage 5, once the scars have healed, surgery is possible. This may take several rounds. <\/p>\n Each stage is difficult, for both people with noma and those close to them. Jeantet notes, \u201cit affects every aspect of the life of people affected by it and their loved ones,\u201d from relationships to work and self-confidence. And the challenges don\u2019t end with surgery. \u201cIt\u2019s really a lifetime journey.\u201d<\/p>\n To raise the condition\u2019s profile, noma survivors including Okanlawon, and organizations including MSF and the Nigerian Ministry of Health, started campaigning in 2020<\/a> to get noma added to the World Health Organization\u2019s list of neglected tropical diseases (NTDs)<\/a>. NTDs are diseases or disease groups that affect many people in low- and middle-income countries, but receive far too little attention<\/a>. Many are avoidable<\/a>.<\/p>\n For noma, it was laborious to assemble all the components of the application to the WHO list, Jeantet remembers. \u201cThis was like a puzzle.\u201d It took at least a year to build the dossier of evidence. Besides Nigeria, 31 other countries joined the effort, and the group submitted the formal application in January 2023.<\/p>\n Finally, in December 2023, the recommendation was issued to add noma to the list. Advocates were thrilled. \u201cMy joy in the WHO recognition is that noma will get more attention,\u201d Okanlawon said at the time<\/a>. Similarly, some researchers expected<\/a> noma\u2019s inclusion to help with funding and monitoring. Noma remains the most recent addition to the list.<\/p>\n Why was this international coalition so invested in getting this disease named to the WHO list? And what happened after it was added?<\/p>\n One Of The Most Significant Lists In Global Health<\/p>\n \u201cThe NTDs can be defeated,\u201d emphasizes Albis Gabrielli, a senior advisor in the director\u2019s office of WHO\u2019s Malaria and Neglected Tropical Diseases Department. \u201c63 countries have already eliminated at least one NTD\u2026So we can see we have an exit strategy.\u201d<\/p>\n With the addition of noma, the NTD list now encompasses 21 conditions<\/a>, from leprosy to Chagas disease. What they have in common<\/a> is that they: 1) disproportionately affect the poor, 2) mainly affect people in tropical and sub-tropical areas, 3) can immediately be addressed by a recognized public health approach, and 4) are neglected by research.<\/p>\n Heather Ferguson, a professor of infectious disease ecology at the University of Glasgow, sees the NTD list as a significant step forward. Previously, because of the limited attention, funding and coordination for these diseases, \u201cthat led almost to them competing against one another for that tiny, tiny pot of invisible money.\u201d <\/p>\n Then, in 2005, WHO decided to bring together its various programs for neglected tropical diseases and create the list. In Feguson\u2019s view, it was strategic \u201cto unify these under the banner of NTDs and really push for this as a common issue.\u201d This helped to draw focus to the neglected communities affected by the diseases, even beyond each individual disease. <\/p>\n One of the most tangible impacts has been donation of medicines for diseases on the list, which WHO advocates for and often administers. In 2025, pharmaceutical companies donated 1.5 billion tablets and vials for NTD treatment. \u201cIt\u2019s actually one of the largest donations of medicines globally that we have today,\u201d Gabrielli says. Still, some conditions on the NTD list have not elicited such donations.<\/p>\n As for research, Ferguson says, \u201cin my career, I have seen lots of positive progress\u201d from the creation of the list. For instance, research funders recognize that a disease on the NTD list affects the poorest of the poor, and that there are tangible ways to address it.<\/p>\n But she acknowledges that many people, possibly including herself, have had inflated expectations for what inclusion on the list can do. It\u2019s no silver bullet\u2014especially with the steep decline of global health budgets<\/a>, including major restructuring of WHO, in the last couple of years. Ferguson wonders, \u201cYes, you have this recognition, but where is the funding going to come from that\u2019s going to deliver the action that is needed?\u201d <\/p>\n Gabrielli emphasizes that WHO is not a funding agency, and inclusion on the list does not automatically release funding. In fact, \u201cthere\u2019s not much change, especially in terms of funding.\u201d This is after all a set of neglected diseases, not well-resourced ones.<\/p>\n The Process For Joining The List<\/p>\n Ahmed Fahal, a surgery professor at the University of Khartoum, has played a key role in the movement to better treat and understand mycetoma, a bacterial or fungal infection that can become chronic, potentially making amputation necessary. <\/p>\n Fahal\u2019s enthusiasm for treating mycetoma was not always welcomed or taken seriously<\/a>. \u201cEven in Sudan, mycetoma patients are neglected,\u201d he reports. In common with a number of the world\u2019s most neglected diseases, \u201cit is not a killing disease, but it is a disabling disease.\u201d To combat the morbidity, stigma and exclusion, Fahal has helped establish both a dedicated research center and a training institution<\/a> supporting people with mycetoma. <\/p>\n The ongoing war in Sudan has challenged this kind of work. The headquarters of the Mycetoma Research Centre (MRC)<\/a> at the University of Khartoum was destroyed, and the equipment at the training center was looted, making it impossible to continue vocational training. But Fahal and other researchers remain determined to continue their work. They\u2019re working to rebuild the centers, and Fahal is continuing to travel in relatively safe parts of the country.<\/p>\n The MRC, together with the government of Sudan, submitted multiple proposals to WHO to have mycetoma added to the NTD list. \u201cThat took about three years,\u201d Fahal recounts. It ended up being a diplomatic process as well as an administrative and scientific one: \u201cYou need to have a lot of people on your side,\u201d says Fahal. Sudan\u2019s health minister spoke with counterparts and other countries, and there were years of meetings to get countries with \u201ca loud voice\u201d onboard. These efforts eventually paid off when mycetoma was added to the NTD list in 2016<\/a>. <\/p>\n That same year, WHO created a formal process for adding a disease to the NTD list. So in theory it should now be a less political and more clear-cut set of steps. A few submissions have not been accepted, because the disease burden was deemed too small (scorpion sting envenoming), the disease could be bundled with another one, or the applicants hadn\u2019t gone through the proper process.<\/p>\n Over the years, the quality of the dossiers submitted to WHO has improved, Gabrielli reports. The noma campaign \u201cwas extremely well prepared,\u201d with a large and varied list of supporting organizations. In general, it\u2019s especially helpful if many countries can join forces behind a campaign, as with noma. \u201cThe more the better,\u201d Gabrielli advises.<\/p>\n One point of contention in the evaluation process has long been whether a disease community should already have some funding in place before that disease is added to the list. Infectious disease researcher Ferguson is now chair of the Strategic and Technical Advisory Group (STAG) for Neglected Tropical Diseases, which makes recommendations to WHO on whether to add certain conditions to the NTD list. Ferguson is keen to make sure that this point about pre-existing funding is formally reviewed.<\/p>\n One argument put forward is that the current four criteria are so wide that just about any disease that affects marginalized communities in tropical communities could be added; without some funding in place, inclusion on the list won\u2019t achieve anything, and could even drain resources. On the other hand, there\u2019s an argument that inclusion could attract that critical funding. <\/p>\n There\u2019s technically no restriction on how long the list can be, but in practice people worry about dilution of scarce resources. This question of how selective to be is so critical because of the dire shortage of funds for NTDs. Ferguson notes that this calls for tough decisions around priority setting. \u201cIt\u2019s heartbreaking, but it\u2019s the current reality.\u201d<\/p>\n Is It Worth It?<\/p>\n Researcher and doctor Rella Zoleko Manego. <\/p>\n Christine Ro<\/p>\n Thus, inclusion on the WHO NTD list is a mixed picture. Sadly, mycetoma expert Fahal says, most of the steps needed to reduce the burden of mycetoma have not been achieved<\/a>. \u201cDefinitely more of the international community donors, funders, they know about mycetoma, but still it is not a priority for many of these funding bodies and research bodies. And hence, really, we need more international collaboration, more effort.\u201d Notably, according to Fahal, no pharmaceutical company is supporting medicine donations for mycetoma patients.<\/p>\n One telling study<\/a> focused on a different condition: snakebite envenoming, which was added to the NTD list in 2010. Subsequently, multiple countries in sub-Saharan Africa appointed a point person for this condition and developed national snakebite policies. However, countries vary widely in how they\u2019ve rolled out these policies.<\/p>\n The noma case also shows the nuances. WHO advisor Gabrielli says that budget cuts have meant that WHO couldn\u2019t do as much on noma as they would have liked. \u201cWe have been advocating for noma, but unfortunately in terms of funding, there\u2019s not much that WHO can do\u2026and this is a bit of a source of disappointment.\u201d But the recognition of noma on the WHO list has given a boost to people already working on the disease, for instance at health ministries.<\/p>\n The survivor community, like any group, has mixed feelings. Okanlawon says that the situation has much improved since noma was added in 2023. \u201cNow, people know what noma disease can do in the life of someone affected and the damage it could do,\u201d says Okanlawon. \u201cThe level of awareness is higher, and it makes people understand and know what to do so they can stand up and help people affected by this disease.\u201d Her speaking engagements have increased since 2023, including at major scientific meetings and government agencies. And she now lives, in her words, \u201clike a normal person.\u201d<\/p>\n Valter Muendane, Elysium\u2019s representative in Mozambique, believes that the NTD list inclusion \u201cmakes a difference, but it\u2019s still not enough,\u201d especially in Mozambique. He reports that some health professionals remain unaware of noma. <\/p>\n One person who believes in the power of the NTD list is Rella Zoleko Manego, a doctor and clinical researcher at the Centre de Recherches M\u00e9dicales de Lambar\u00e9n\u00e9, Gabon and the Bernhard Nocht Institute for Tropical Medicine in Hamburg, Germany. Zoleko Manego was shocked the first time she saw a patient with a worm wriggling across her eye. This was the parasitic loa loa worm, which she\u2019d heard about in her medical training. But there had been little information on treatment<\/a>. Doctors would just tell patients there was nothing to do. \u201cI realized we don\u2019t have anything, we don\u2019t have any procedures to treat patients in endemic areas,\u201d Zoleko Manego says.<\/p>\n So she set out to research how prevalent loiasis is, and what its symptoms are besides the tell-tale worm in the eye, which may not always appear to doctors. Treatment is challenging for multiple reasons, including the possibility of inducing a serious allergic reaction that rural hospitals are ill-equipped to manage. Zoleko Manego and other researchers have investigated the possibility of using drugs developed for other parasites, but the match is imperfect: the parasites may live in different places in the body, or the side effects might be too strong. <\/p>\n Also mismatched is the best course of treatment in endemic countries and non-endemic countries. A German hospital treating a traveller who picked up loiasis would likely have a very different level of resources and awareness to a rural facility in Gabon, for instance. The risk of re-infection would also diverge.<\/p>\n This is a \u201cvery, very neglected disease,\u201d Zoleko Manego says, for a number of reasons. For one thing, the roughly 20 million people<\/a> living with loiasis are mainly in scattered rural parts of Central and West Africa. And there\u2019s a language gap between those areas, where mainly French and local languages are spoken, and the English-speaking research world. That limits the spread of information<\/a> on this globally little-known condition<\/a>.<\/p>\n