Source: Zainab Adewale and Leshi James.

Picture of Ms Ajefu

In a deeply personal and revealing interview with Premium Times, Catherine Ajefu, founder of the Hope at Dawn Foundation, sheds light on the often-ignored realities of sickle cell anaemia in Nigeria. With nearly a decade of work in Kogi State, she shares painful truths about lack of awareness, neglect by public institutions, and the critical role NGOs play in keeping children alive.

Nigeria’s Sickle Cell Burden: A Silent Crisis

Nigeria holds the grim distinction of having the highest sickle cell disease burden in the world, with over 150,000 babies born each year with the condition. Yet, according to Ajefu, awareness is “terribly low.” In many communities, the concept of genotype compatibility is poorly understood or completely unknown.

“We’ve seen families with five or six children living with the disease. People still think ‘O positive’ is a genotype,” she says.

Even worse is the lack of access to basic medication like folic acid, let alone advanced care. In Kogi State, for instance, there is no functioning blood bank and only three hematologists serve the entire state.

Ignorance and Stigma: A Deadlier Disease

Ajefu recounts disturbing stories, including a young girl who died after being locked in a room during a crisis because her family didn’t understand her condition.

The foundation, Hope at Dawn, began with 229 registered sickle cell warriors; today that number has dropped to 192, mostly due to preventable deaths. Many patients, she adds, are isolated and stigmatized with labels like “Abiku” or “Ogbanje.”

“So, mostly, it is not sickle cell anaemia that kills us faster; it is the stigma,” she says.

Public Health Failure: Where is the Government?

Ajefu strongly criticizes the lack of government support. She says only a handful of states make any visible effort to address sickle cell anaemia.

“There’s no meaningful funding. Government attention goes to cancer or HIV. Sickle cell is treated like a random disorder,” she laments.

She also highlights a massive brain drain, with doctors, particularly hematologists, leaving Nigeria for better opportunities abroad. In many hospitals, patients must rely on private labs for diagnostics because public facilities are grossly under-equipped.

The Role of NGOs: Keeping Hope Alive

NGOs, according to Ajefu, are the only lifeline for many children and families. From providing free medication to funding blood transfusions and advocacy campaigns, they are doing the work public institutions have failed to do.

But this, too, comes at a cost.

“We are burning out. We are under-resourced. We need the government. We need partnerships. We need tools to scale,” she says.

Is There Hope?

When asked about the future, Ajefu’s response is sobering.

“Our hope is less than five per cent,” she says. “We’re still dreaming and praying that our voices are heard.”