PT Health Watch: Poor awareness still driving new sickle cell cases in Nigeria – Advocate

Sickle cell disease (SCD) is a severe inherited blood disorder that causes red blood cells to become rigid and sickle-shaped, blocking blood flow and leading to pain, infections, and organ damage.

Common symptoms include fatigue, swollen hands and feet, delayed growth, frequent infections, and episodes of severe pain known as crises. The disease occurs when a child inherits the sickle cell gene from both parents.

According to the World Health Organisation (WHO), approximately five per cent of the global population carries trait genes for haemoglobin disorders, primarily sickle cell disease and thalassemia.

These disorders are inherited blood conditions caused by the transmission of mutant haemoglobin genes from both parents—who are often unaware they are carriers.

Each year, over 300,000 babies are born with severe haemoglobin disorders. However, WHO notes that the health burden of these conditions can be significantly reduced through effective prevention and management programmes.

Sickle Cell in Nigeria

A  study by the Centre for Policy Impact in Global Health revealed that over 30 per cent of people with SCD in Nigeria experience anxiety and depression, largely due to stigma, physical suffering, and lack of psychosocial support.

Despite this burden, life expectancy for most sickle cell patients in Nigeria hovers around 21 years, far below what is achievable with adequate care and early intervention.

The country also records the highest number of sickle cell births globally, with an estimated number of 150,000 babies affected yearly.

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More than half of these children die before age five from preventable causes. Yet, awareness remains low, with limited access to diagnosis, treatment, and counselling.

In a bid to address these challenges, the federal government in June 2025 announced the expansion of sickle cell screening and management services across six centres nationwide, alongside an updated national guideline for prevention and treatment. 

Interventions

The Coordinating Minister of Health and Social Welfare, Muhammad Pate, confirmed plans to upgrade the Abuja-based Sickle Cell Centre of Excellence into an international research and training hub.

Speaking with PT Healthwatch, Catherine Ajefu, founder of Hope at Dawn Foundation, believes these policy efforts have yet to translate into meaningful change for many families.

Ms Ajefu stressed that misconceptions continue to fuel new cases and expose more children to avoidable suffering, a situation made worse by the near-absence of functional healthcare infrastructure in many areas.

Without access to proper facilities or affordable care, she noted, most families cannot even afford basic medications like folic acid, let alone advanced treatment—leaving many children vulnerable and untreated.

Stigma and misconceptions

Ms Ajefu said stigma remains a major problem for people living with sickle cell. She recounted encountering patients who were labelled “Ogbanje” or “Abiku”, names rooted in cultural beliefs that suggest a child is cursed or sent to bring pain to their family.

She added that misconceptions about the disease are still widespread. Some believe people with SCD cannot live beyond 20, or that their pain disappears with age.

But according to her, the disease is lifelong, and its impact differs from person to person.

She recalled speaking with a 63-year-old woman who had undergone multiple surgeries due to complications from the disease, a clear indication that SCD is not limited to childhood.

Having lived with sickle cell herself, Ms Ajefu said she understands the emotional toll it takes.

“Many dreams are cut short, not just by the disease but by the rejection people face,” she said.

Health system

Nigeria’s healthcare system, according to Ms Ajefu, is simply not equipped to deal with sickle cell.

She explained that most state hospitals lack essential equipment, while federal hospitals are overcrowded.

Even when patients manage to see specialists, they are often referred to private laboratories for basic tests and scans, an additional cost that many cannot afford.

She noted that, in some cases, families end up turning to prayer houses or traditional healers in desperation.

While a few states offer limited support through individual initiatives, Ms Ajefu said most governments do nothing.

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“Sickle cell isn’t seen as a priority. Attention mostly goes to cancer or HIV. There is little to no budget allocation, and no sustainable policy,” she added.

In the absence of government backing, she said NGOs like Hope at Dawn Foundation have become the only safety net for many patients.

Her team continues to provide medications, fund transfusions, and conduct genotype testing across local communities, but the work is overwhelming.

“We are stretched thin. We are doing all we can, but it’s not enough,” she said.

She called for urgent government intervention, including subsidised medication, equipment provision, training of healthcare workers, and investments in research.

“We still dream that one day, these children will not be left behind. That they will not have to suffer for what they inherited. That they will live, thrive, and be seen,” she said.