Africa is finally making its own medicine for sickle-cell disease. Diagnosing the stigma around it will be harder.
Months before her final battle with sickle-cell disease, Julles had spent nights by her mother’s hospital bed — every evening after school, whole days on weekends. She felt the chills and knew she had put a toll on her body. That day, Julles was too sick to stay at school. I was asked to take her home. It was a Monday. That evening, I bought her the chips she had been craving and sent them with her boyfriend, Paul, believing I would see her over the weekend. We lived on opposite sides of Kisumu city, and neither of us had a phone.
On Wednesday, I went to school as usual, praying for Julles, believing she would pull through this crisis. The atmosphere that morning was sombre — a hush moving through students who would normally be chattering. Then came the whispers: something terrible had happened. At first, I thought it was Julles’s mother, who taught at our school.
When we were called to assembly, the whispers died at the sound of the teacher on duty addressing us. “Good morning, students.” “Good morning, Madam Makumbusho,” we answered in chorus.
Madam Makumbusho stayed silent for what felt like an hour, then began: “Today we have unfortunate news. We have lost one of us.”
Dead silence. We looked at each other, already registering the sad truth: it was Madam Ogola’s daughter. “This morning,” she continued, pausing here and there, drawing out our dread, “we received information that our dear sister Julles Ogola has died.”
I collapsed. Julles was my best friend, my deskmate. The headmistress called her my oxygen — we were always seen together. Whenever she spotted either of us alone, she would ask, “Where did you leave your oxygen?”
That Wednesday morning, I had lost my oxygen. I could not breathe. My knees went weak. The shock struck my heart like a bullet had pierced it.
We later learned that Julles had been taken to hospital that morning after a crisis. Her siblings — her mother was herself admitted at the time — did not have the cash on hand to have her admitted. Julles died on the waiting bay. There are many stories like this in Kenya, where thousands of sickle-cell patients have died either because they could not afford medication, or because they could not afford treatment at a health facility.
Yet like a weather forecast, a sickle-cell crisis usually sends warning signs before it strikes — if only health systems are built to listen for them.
Wanjiku knew the signs before the doctors did: the ache in her joints, the fever that would not break, the sense — familiar after years of practice — that her body was readying itself for another siege.
A blood test at a local hospital came back clear. She was sent home with painkillers and a prayer that sleep would reset things. It did not. By the time she reached her usual hospital two days later, her haemoglobin had fallen to 6.5 grams per decilitre — roughly half a healthy level — and a doctor was already arranging her admission before the lab results confirmed what her body had been insisting on for days.
What followed was not the illness itself so much as its logistics: veins too narrow and twisted for a routine intravenous line, a first needle that “tissued” into surrounding flesh within minutes, a second nurse, a second attempt, and a quiet, practised negotiation over which parts of her arm remained usable.
Sickle-cell disease — an inherited disorder in which red blood cells bend into rigid crescents and jam the body’s smallest vessels — is often described in textbooks as a matter of pain crises and organ damage. Patients describe it, more precisely, as a matter of logistics: which hospital, which vein, which nurse, which day.
Merab knew this better than most, and said so publicly before she no longer could. A prize-winning health journalist who died in 2023, she spent much of her career writing about the diseases of others while quietly managing her own. Diagnosed with sickle-cell disease at ten, after years of tests that led nowhere, she recalled how her doctor eventually told her parents what was wrong. She was, by her own account, fortunate: her family could afford treatment that many Kenyan families cannot. What she could not buy her way out of was the scepticism of people who doubted she was ill because she did not look it — a suspicion that, as she noted, corroded her finances, her social life and her mental health as thoroughly as the disease corroded her blood vessels.
In January 2023, not long before her death, she was fitted with a peripherally inserted central catheter — a small mercy for veins that had already been punctured too many times.
The macabre logic of an inherited disease is that geography is destiny twice over: once at conception, and again at the pharmacy. Roughly 80% of the world’s sickle-cell cases occur in Africa, yet until recently the continent manufactured almost none of its own treatment, relying instead on imported hydroxyurea from Europe and America at prices few public health budgets — let alone individual families — could sustain. That began to change in November 2025, when Teranga Pharma, a Senegalese firm, launched Drepaf, a generic version of hydroxyurea produced at a factory outside Dakar. It is not a cure — hydroxyurea manages the disease’s crises rather than eliminating the faulty gene behind them — but it is, by local accounts, sold at roughly a third of the price of imported equivalents, with paediatric doses formulated for children as young as nine months. Senegal is not the first country to use hydroxyurea; it is the first in Africa to make it, which is a different and arguably more consequential achievement, since a supply chain that does not run through Europe cannot be disrupted by a shipping crisis on the other side of the world.
Before she died, Merab had also written about a more radical treatment than Drepaf: a one-time gene-editing therapy, sold under the brand Casgevy, that American regulators approved in December 2023 as the first outright cure for sickle-cell disease rather than merely its management. The Guardian and other outlets covered its arrival with the cautious optimism reserved for medical breakthroughs that come with an asterisk. The asterisk, in this case, is a list price of $2.2m per patient, available only in the United States and, shortly after, Britain — a sum beyond reach not merely for poor patients in the countries that carry most of the world’s sickle-cell burden, but for their governments’ entire health budgets. The contrast is almost comic in its starkness: a cure exists, priced for a market of perhaps a few thousand wealthy patients a year, while the disease itself is concentrated overwhelmingly among people for whom a $5 packet of Drepaf already strains the household budget. Global medicine, it turns out, can cure a genetic disease and still fail nearly everyone who has it.
Sources: Teranga Pharma / AFP reporting on Drepaf pricing; SciDev.Net and Guardian coverage of Casgevy’s FDA approval and $2.2m list price; peer-reviewed cost study of outpatient sickle-cell care in Equatorial Africa.
Kenya’s western and Nyanza regions illustrate why manufacturing is necessary but not sufficient. There, the prevalence of the sickle-cell trait runs as high as 18–30% of the population, a legacy of the same genetic trade-off that once conferred resistance to malaria.
Politicians occasionally speak of wanting to “eradicate” the disease in these counties, a word that flatters ambition more than biology. Sickle-cell disease is not an infection to be stamped out; it is written into the genome, and short of a bone-marrow transplant or gene therapy — both currently rare and expensive even in wealthy countries — it can only be managed, not erased. To Kenya’s credit, hydroxyurea now sits on the country’s essential medicines list, and coverage under the national health insurer has expanded to include sickle-cell management. Kisumu, Siaya and Kakamega counties have partnered with international organisations to introduce newborn screening. But out-of-pocket costs remain high, diagnostic capacity in rural clinics remains thin, and screening at birth — the single intervention likeliest to prevent a repeat of Merab’s decade in diagnostic limbo — remains patchy at best.
None of this quite explains why patients like Julles, Wanjiku and Merab must also manage other people’s disbelief. Sickle-cell disease is peculiarly suited to scepticism: it is invisible between crises, hereditary rather than contagious, and concentrated among populations already accustomed to having their pain underestimated by health systems.
The result is a disease that imposes two burdens at once, one biological and one social, and policymakers have generally addressed only the first. A supply of affordable hydroxyurea will do little for a patient too embarrassed, or too disbelieved, to ask for it.
The lesson of Senegal’s factory is not that Africa has solved sickle-cell disease, but that it has demonstrated the easier half of the problem is solvable with sufficient will: a factory can be built, a generic drug formulated, a supply chain localised. The harder half — persuading clinics to screen newborns as a matter of routine, insurers to cover the results, and societies to believe patients who do not look sick — requires no patent and no factory, only the same seriousness now being applied to manufacturing. Julles’s life was cut short before it could bloom. Merab spent her career trying to supply that seriousness through journalism. It would be a fitting tribute — and a considerably cheaper one than a factory — if health systems finally supplied it back.
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