Nearly 20,000 babies are born with sickle cell disease in Uganda each year. Across Africa, many children with the inherited blood disorder die before their fifth birthday because doctors diagnose it too late.
For Irene Nalukwago, those statistics have a face. Her daughter was born healthy at a hospital in Kayunga, east of the capital, Kampala. At six months old, though, the girl began falling sick and becoming anaemic. Transfusions followed almost every week. She was in considerable pain. Doctors suspected a deeper problem, and tests confirmed sickle cell disease.
She's 12 now. Repeated attacks have taken a heavy toll.
"She became paralysed on the left side of her body; I just had to carry her," Nalukwago said.
Years Without a Diagnosis
Her story isn't isolated. Thousands of children have gone years without early diagnosis and proper treatment. Families watched their children suffer for long stretches before anyone named the cause.
That’s starting to change. Uganda has scaled up mandatory newborn screening across the country, so health workers can identify the disease at the start of a child's life, rather than after a crisis.
What Public Care Makes Possible
At Kayunga Referral Hospital, screening leads straight into treatment. "All our children are started on hydroxyurea as early as nine months," said Dr Isaac Tumusiime, a medical officer at the hospital. The oral prescription medication reduces painful attacks and the need for blood transfusions.
Supply matters as much as the prescription. "And there is continuous supply so there is good adherence to the treatment as well, so most of the children have managed to survive through this setup," Tumusiime said.
Medical professionals say early diagnosis helps manage the condition before it becomes severe. At the Kayunga clinic, staff advise patients that routine check-ups can help them stay healthy and avoid life-threatening complications such as strokes. Doctors say regular monitoring can catch problems early, ease pressure on stretched health workers and give patients a better chance of longer, healthier lives.
A Cure Still Out of Reach
Science is moving faster than access. Some countries have rolled out gene therapy that could potentially end years of suffering for many patients. Tumusiime said parents are encouraged to manage their children with hydroxyurea "with a hope that maybe one day gene therapy could be affordable."
For now, most people who need gene therapy can't access it.
Why This Matters: Sickle cell disease in Uganda shows what a publicly organised response can do, and where its limits lie. Tumusiime credits mandatory screening and a continuous supply of hydroxyurea with keeping most children at his clinic alive. That's a system doing its job. But the same facts show how much depends on it: nearly 20,000 newborns are affected every year, health workers are stretched, and many children across Africa still die before age five because of late diagnosis. A possible permanent cure exists in some countries, yet most patients can't reach it. From a public-health perspective, the question is whether governments and international partners will treat affordability as a problem to solve, or whether a cure will stay limited to those in places that already have it.