Somewhere between 150,000 and 200,000 Nigerian babies are born with sickle cell disease every year. That is the highest figure of any country on earth, and it is not close. Sub-Saharan Africa carries more than 70 per cent of the global burden; Nigeria alone accounts for the largest single share of it.
In June, the Federal Ministry of Health and Social Welfare began implementing a Universal Newborn Screening Policy for sickle cell disease, starting in selected primary and secondary facilities in Lagos, Kano and the Federal Capital Territory, with support from the Clinton Health Access Initiative. In Lagos, newborns are now screened with a heel-prick test within the first 48 to 72 hours of life, with babies flagged as at risk placed on preventive care while confirmatory testing is arranged.
This matters more than it may sound. Across Africa, an estimated 50 to 80 per cent of children born with sickle cell disease do not survive to their fifth birthday — not because the disease is untreatable, but because most of them are never diagnosed in time to be treated at all. A baby identified in the first week of life can be started on penicillin prophylaxis, vaccinated on schedule, monitored, and put on hydroxyurea. A baby diagnosed at four years old during a crisis has already lost the years that mattered most.
So the policy is the right one. But it catches the problem at the end of the chain, not the beginning.
The decision that comes first
Sickle cell disease is inherited. Each of us carries two haemoglobin genes, one from each parent. The common combinations in Nigeria are AA (normal), AS (carrier, or “trait”), and SS (sickle cell disease). There are others — AC, SC — which matter clinically but are less common.
Roughly one in four Nigerian adults carries the sickle cell trait.
That is not an accident of bad luck. Carrying one copy of the sickle gene offers meaningful protection against severe malaria, which is precisely why the gene became so common in this part of the world. Our ancestors survived because of it.
The arithmetic that follows is simple and unforgiving. When two AS carriers have a child together, each pregnancy carries a 25 per cent chance of AA, a 50 per cent chance of AS, and a 25 per cent chance of SS. Not one in four children across a family — one in four for every single pregnancy, independently. Three healthy children in a row change nothing about the fourth.
This is why genotype testing before marriage or before conception has become common practice in Nigerian churches, mosques and clinics. It is sound public health advice.
It only works if the test is right.
Not all genotype tests are the same
Here is what too few people are told: there is more than one way to test for the sickle gene, and they do not all answer the same question.
The sickling test and the solubility test (often sold as a quick, cheap screen) detect whether sickle haemoglobin is present in your blood. That is all they do. They cannot reliably distinguish AS from SS, because both contain HbS. A positive result tells you the gene is there. It does not tell you how many copies you have, and a negative result on a poorly performed test can be falsely reassuring.
Haemoglobin electrophoresis separates the haemoglobin types and can distinguish AA from AS from SS. This is the test you should be asking for by name.
High-performance liquid chromatography (HPLC) is the reference standard, and is what proper newborn screening programmes use.
Health experts have repeatedly flagged unreliable genotype testing as one of the drivers of Nigeria’s continuing sickle cell burden, alongside weak screening coverage, low awareness and stigma. In practice this means there are adults in this country who were told years ago that they are AA, on the strength of a test that was never designed to establish that, and who have made life decisions on that basis.
Two further things distort results, and neither is widely known:
• A recent blood transfusion can make your genotype result meaningless. Donor haemoglobin circulates in your blood for weeks. Wait at least three months after a transfusion before testing.
• Testing a baby under six months old using standard methods can mislead, because fetal haemoglobin is still dominant. This is exactly why newborn screening uses specialised methods rather than the routine laboratory test.
If your genotype was established by a quick roadside or pharmacy screen, or during a period when you had recently been transfused, or in infancy, it is worth doing again properly.
Treatment exists, and it is under-used
For those already living with sickle cell disease, the picture is better than it was — but the medicine is not reaching people.
Hydroxyurea is a disease-modifying treatment that reduces the frequency of painful crises and improves survival. It is not new, and it is not exotic. Yet uptake in Nigeria remains below 20 per cent. The National Sickle Cell Centre has been training health workers across 16 sites specifically to raise that number, and the Ministry has revised the national guidelines to strengthen hydroxyurea use.
There is also infrastructure being built quietly. More than 38,000 babies have been screened in the FCT through existing newborn programmes, a national patient registry now holds records for over 10,000 people across 25 centres, and more than 700 genetic counsellors have been trained nationwide.
What to do
• Know your genotype — and know which test produced it. Ask specifically for haemoglobin electrophoresis. If you cannot confirm what method was used, treat the result as unconfirmed.
• Test before the relationship is serious, not after. Genotype information is only useful while it can still inform a decision.
• If you and your partner are both AS, get genetic counselling. This is not a verdict. It is a conversation about options, risks and planning, and Nigeria now has hundreds of trained counsellors.
• If you have a newborn in Lagos, Kano or the FCT, ask about the heel-prick screen. If you are elsewhere, ask your paediatrician about early infant screening.
• If someone in your family has SS, ask their doctor about hydroxyurea. Fewer than one in five patients who could benefit are receiving it.
The bottom line
Sickle cell disease in Nigeria is not a mystery. We know the genetics, we know the treatment, and as of June we have a national newborn screening policy beginning to roll out.
What we have not fixed is the quality and honesty of the information people receive before any of that becomes relevant.
A country where one in four adults carries the trait cannot afford a testing culture where “I’m AA” is something people believe rather than something they have properly established.
And a final word that should not need saying: people living with sickle cell disease are not the result of a mistake. They are Nigerians living with a serious, manageable condition, and the stigma that follows them is itself part of why families avoid testing and delay care.
Better information is meant to expand what people can choose. It is not a judgement on anyone already here.
