Mulikat Okanlawon was six when her face began to betray her.
It started in a village in Nigeria’s Ogun State, where poverty wasn’t a statistic, it was the air she breathed. Her skin grew hot. Her cheeks swelled. The locals saw malaria, the usual suspect in these parts. They tried their best, but they were fighting the wrong war.
By the time a stranger at a bus stop named her condition noma, the damage was done. Gangrene. Rotting tissue. The left side of her face was gone, eaten away by bacteria. She spent months in hospitals in Lagos and Sokoto, waking up to the sound of other sufferers. That realization changed everything. She wasn’t alone.
She survived. Then she did something unexpected: she stayed. Okanlawon used her voice—her English, her clarity—to become a worker at the specialist hospital in Sokoto. By 2022, she’d cofounded Elysium, an association for noma survivors. She moved from victim to architect of her own care.
A Gangrenous Puzzle
Noma is cruel. Fast. Devastating.
Claire Jeantet, a former campaign manager for Médecins Sans Frontières, puts it bluntly. Up to 90% of people with noma die within weeks. If antibiotics don’t stop the rot early, you enter the stages of disfigurement. Stage 3 means permanent damage. Stage 5 means scars have formed, and surgery becomes possible. But surgery is just the start.
It affects every aspect of the life… It’s really a lifetime journey.
Relationships break. Work vanishes. Self-worth collapses.
In 2020, survivors like Okanlawon and partners like the Nigerian Ministry of Health started pushing hard. They wanted noma added to the WHO’s list of Neglected Tropical Diseases (NTDs). The application process was grueling. “It was like a puzzle,” Jeantet recalls. Thirty-one countries joined in. By January 2023, they had their dossier. In December 2023? Approval.
Why does this list matter so much?
The List That Changes Nothing And Everything
There are now 21 NTDs, ranging from leprosy to noma. Albis Gabrielli of the WHO sees this list as a way to beat the diseases. “63 countries have eliminated at least one NTD,” he says. “We have an exit strategy.”
The logic is sound. These diseases target the poor, mostly in tropics. They’re ignored by researchers but fixable with public health measures.
But look closer.
Before the NTD umbrella in 2005, these diseases fought each other for scraps. Now? They unite. The biggest win isn’t research. It’s pills. Pharmaceutical companies donate hundreds of millions of doses for list-bound diseases. In 2026 alone? 1.5 billion units donated. That’s huge.
Is it a silver bullet? No.
Heather Ferguson, an ecology professor at Glasgow, loves the progress but hates the expectation. Global health budgets are shrinking. The WHO is restructuring. Recognition is nice, sure, but who is writing the checks?
Yes, you have this recognition, but where does the funding come from to deliver action?
Gabrielli admits the hard truth. The WHO isn’t a bank. Getting on the list doesn’t auto-release money. These are neglected diseases for a reason: nobody is funding them heavily.
The Diplomatic Dance
Getting in is a grind. Take Ahmed Fahal. He’s been fighting for mycetoma, a fungal/bacterial infection that causes amputations but rarely kills.
In Sudan, it’s invisible. Disabling, yes. Deadly? No. So no one cares. Then the war started. His research center got bombed. Equipment looted. Yet Fahal kept traveling in safe zones.
Getting mycetoma onto the list in 2013 took years of diplomacy. You need friends with “loud voices.” You need ministers talking to other ministers. It was less science and more politics.
Since 2013, the process is cleaner, technically. But it’s still political. Some applications fail because the disease burden is too small or the data is thin. Gabrielli praises the noma team for their prep work. “The more [supporters], the better.”
But here is the snag.
Some researchers argue a disease shouldn’t join the NTD family unless it already has funding. If it’s completely empty, listing it just dilutes resources. Ferguson, who now chairs the advisory group for NTDs, wants this debated formally. The pool is small. Every new disease makes the slices smaller. It is a heartbreaking choice, but it’s real.
So, Is It Worth It?
Mixed bag.
For Fahal, adding mycetoma didn’t magically bring donors. “No pharmaceutical company supports mycetoma patients,” he says. Awareness grew. Money did not.
Look at snakebites, added in 2017. Some countries made national policies. Others didn’t bother. The result? Patchwork protection for people who need it most.
Noma is nuanced. Budget cuts meant the WHO couldn’t spend as much on it as they wanted. Disappointment? Yes. But for Okanlawon, the status changed.
“People know what noma is now.” She speaks at major conferences. Governments listen. She lives like a normal person again.
In Mozambique, however, Valter Muendane says awareness is still lacking. Health professionals don’t know what to look for. The list didn’t fix everything there.
Then there is Dr. Rella Zoleko Manego in Gabon. She treats loiasis, the African eye worm. Imagine seeing a parasite wiggle across someone’s iris. Most doctors have no idea what to do. They just shrug. “Nothing we can do.”
So Manego researches. She tests drugs used for other worms. The fit is bad. Side effects are scary. Rural clinics can’t handle anaphylactic shocks. Meanwhile, a hospital in Germany could treat a tourist with the same infection with ease, resources, and precision.
Two worlds. One parasite.
This is the core of the neglect. 20 million people suffer from loiasis. They are ignored not because science is impossible, but because the market is nonexistent. The NTD list brings a spotlight. Sometimes, light is all you have. But light doesn’t pay for drugs. It doesn’t rebuild centers.
The list is a symbol. A tool. A hope. It is not a solution. And as budgets shrink, that distinction matters more than ever.
