In this interview with PREMIUM TIMES, Catherine Ajefu, founder of Hope at Dawn Foundation, shares the urgent and grim realities of sickle cell care in Nigeria. With nearly a decade of work in Kogi State, Ms Ajefu discusses the daily struggles of patients, the neglect by public institutions, and the role NGOs play in keeping thousands of children alive.
PT: Can you tell us about sickle cell disease in Nigeria, and what access to treatment looks like?
Ms AJefu: Sickle cell disease is prevalent. Nigeria has the highest number of people living with sickle cell anaemia in the world. According to recent figures, over 150,000 babies are born with sickle cell disease each year. That’s a high number.
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But the awareness level is terribly low. Many communities still don’t even know what sickle cell anaemia is. In Kogi State, we have had families with five, six, even seven children all living with the disease because they didn’t know better. The idea of genotype compatibility before marriage is still new to many.
Access to medication is even worse. Families can’t afford folic acid, let alone more advanced treatments. Some have multiple children with the condition and are forced to choose between sending them to school or buying medication. In many parts of the country, especially in Kogi, there are no blood banks, no haematologists, and no understanding of what sickle cell really is.
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A lot needs to be done because there are lots of surgeries to be done. Most communities do not have blood banks that children living with sickle cell anaemia can easily run to. We have not even started 10 per cent of the job because people don’t get to talk more about sickle cell in their communities. They need to increase the volume of their voices.
At Hope at Dawn Foundation, we have been working for the past nine years, primarily in Kogi State, supporting children and youth living with sickle cell anaemia. We help reduce the high mortality rate by providing free medications, funding blood transfusions, and other support. We started in Kogi State, but we are gradually expanding by moving into Abuja.
PT: You have worked in Kogi State for nearly a decade. What have you observed specifically there?
Ms AJefu: We are the only dedicated sickle cell NGO in the state. Six years ago, we had 229 registered warriors. Today, it’s down to 192 due to mortality rates. Every day, we have new cases of children who are being diagnosed with sickle cell anaemia because the parents do not understand the difference between genotype and blood group. The awareness level is close to zero. We have had families tell us their genotype is ‘O positive.’ They don’t know the difference. That shows you how much education is missing.
We have had a case where a young girl in crisis was locked in a room for days by her family, and she eventually died in the room when she was not given the right attention and medical care. That tells you everything.
Kogi doesn’t have a functioning blood bank, and only three haematologists serve the entire state. Most state hospitals are unequipped, and there’s no real government intervention. We carry out free genotype testing and advocacy in rural communities, but are massively under-resourced.
PT: What is the situation like across Nigeria regarding awareness and treatment?
Ms Ajefu: Lagos has the most active sickle cell advocacy, with numerous organisations working to support patients and raise awareness. Abuja is making efforts, but overall, the nation’s approach to sickle cell education is lacking. Sickle cell remains absent from educational curricula, despite its global prevalence. We keep ignoring a condition that affects millions of children and youths, who keep dying every day.
Awareness must start in classrooms and extend to churches, mosques, and workplaces. Many people still lie about their genotype, believing love is enough to overcome genetic incompatibility, but love isn’t sufficient. The burden often falls on women when men abandon their responsibilities. Personally, I lost three siblings to sickle cell before I was born. I was diagnosed at six and faced stigma that affected my education. Many dreams are cut short due to this disease, and we need collective action to change that.
PT: What damaging misconceptions have you encountered, and how do they affect patients?
Ms AJefu: So many. One of the most common is that people with sickle cell don’t live past 20. Another is that if they survive until 25, the pain magically stops. None of that is true.
People also say we’re cursed. They call us names like ‘Abiku’ or ‘Ogbanje’, who drain families emotionally and financially. I’ve lost friends at 20, 35, and even 40. Pain doesn’t end with age.
I spoke to a 63-year-old warrior who had both hips replaced due to complications. Everyone’s genetic variation is different. Some go a whole year without a transfusion. Others need one every two months. It’s a lifelong fight, physically, mentally, and emotionally.
PT: Are advanced treatments like gene therapy or bone marrow transplants a realistic option?
Ms Ajefu: Not for most of us. We have heard stories about how these treatments have helped sickle cell warriors to reduce their pain or change their gene type, and all of that. But they are very, very expensive for us in Nigeria to afford. Only a few people can afford them or travel abroad for care. For the rest of us, it’s out of reach. An average Nigerian can’t even afford basic medication. If they really want to help us, they need to subsidise these treatments. Bringing them down to a realistic price that we can afford in Africa would definitely be appreciated; having a process of reducing our pain so that we will not be in and out of the hospital frequently.
PT: From your experience, how equipped are Nigerian healthcare facilities to handle sickle cell?
Ms Ajefu: When it comes to the equipped hospitals and healthcare centres in Nigeria, it is nothing to write home about. As a country, we are far behind. You can only see adequate equipment in private hospitals or a federal hospital. And in federal hospitals, because they are overcrowded, it becomes very difficult for you to be attended to.
State hospitals are empty of equipment, facilities, and specialists. Many of the best doctors are leaving the country. Even basic diagnostics require patients to go to private labs first.
You see a good haematologist today; next month, they are gone. For tests, you are told to go to a private lab. For scans, same thing. So what happens to poor children?
PT: Are government policies or funding doing anything for people with sickle cell?
Ms Ajefu: No. I can’t name 10 states in Nigeria that are actively supporting children with sickle cell. I only know about a few states where their first lady or the government tries to support these children, but in most states in Nigeria, the government does not pay attention to what is called sickle cell anaemia. Most attention goes to cancer or HIV, while sickle cell is seen as a random disorder that affects children. There’s no meaningful funding. Parents are now turning to prayer houses because they can’t afford treatments. So, the government is not doing enough to help children living with sickle cell anaemia. Their policy regarding sickle cell is being ignored, or maybe only exists on paper.
And what do we see as NGOs? Nothing. No support. No grants. No resources. We see warriors dropping out of school, unable to even afford transportation to clinics or hospital bills, let alone treatments. These are the gaps, and they are wide.
So, mostly, it is not the sickle cell anaemia that kills us faster; it is the stigma we get from society because we have been told things that break our hearts, that make us feel like nothing and nothing good can come from us.
PT: What role do NGOs and community efforts play in filling those gaps, and what more is needed?
Ms Ajefu: Right now, NGOs are the only hope many sickle cell patients have. We provide medication and awareness campaigns. We pay for blood transfusions. But we are burning out. Our resources are limited. The work is overwhelming.
We need the government, and we need partnerships. We need access to funding. We need the tools to scale our impact.
PT: What gives you hope, if anything, about the future of sickle cell care in Nigeria?
Ms Ajefu: Honestly, our hope is very little and less than five per cent. The government isn’t pushing for innovation, for access, or research
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But we are still dreaming and still praying that our voices are being heard, and the government will be able to support us, equip hospitals, and provide the right medications for us to get better, get access to the medications, and make the sickle cell community in Nigeria better.
They should bring in better medications at a very reduced price and then try to get innovative equipment, doctors, and good resources that can help us build together as a nation and as a sickle cell community to be better for the next generation to come and to reduce sickle cell anaemia in Nigeria.
