From wrong tests to costly care: Inside Nigeria’s sickle cell crisis

For Mr and Mrs Matthew Ponfa, a routine hospital visit became the moment their lives changed forever. Their 11-month-old son had suddenly started crying in severe pain. Nothing they did could calm him.

Worried, the couple rushed him to the hospital, where the doctor asked a simple but important question; “What are the parents’ genotypes?”

The couple immediately showed the doctor the genotype test results they had saved on their phone before marriage. The report had shown that Matthew was AA, while his wife was AS.

Believing they were genetically compatible, the couple went ahead with their marriage, confident that they had taken the right step to prevent sickle cell disease. However, the doctor advised them to repeat the test using a more reliable method.

The new result brought a painful discovery. Matthew was not AA. He was AS. Both parents carried the sickle cell trait, and their son had inherited HbSS; the most severe form of sickle cell disease.

For the Ponfas, that moment marked the beginning of a difficult journey of hospital visits, painful crises, emotional stress and financial pressure. Their experience reflects a wider concern among health experts that inaccurate genotype test results from some laboratories may be adding to Nigeria’s sickle cell burden.

Medical experts say some couples who believe they have taken the right precautions may unknowingly have children with sickle cell disease because of wrong laboratory results.

Mr Timothy Adeoye, a medical laboratory scientist, said genotype testing must be handled with the highest level of accuracy.

“Genotype testing is too important to be left to chance. One inaccurate result can alter the course of an entire family’s future,” he said.

Adeoye explained that wrong results may occur because of outdated testing methods, poor quality control, equipment challenges and human errors.

He said modern techniques such as High-Performance Liquid Chromatography (HPLC) and molecular testing provide more accurate results and should be made available in more laboratories.

The issue is significant in Nigeria, which carries one of the highest sickle cell burdens in the world.

According to the World Health Organisation (WHO), between 20 and 30 per cent of Nigerians carry the sickle cell trait, while about 150,000 babies are born with sickle cell disease in the country every year.

Globally, millions of people live with sickle cell disease, with Africa carrying the largest share of the burden.

Experts say many children in low-income countries die early due to late diagnosis, limited access to treatment and weak healthcare systems.

Unlike many inherited conditions, sickle cell disease can be detected early and managed effectively when patients receive proper care.

Dr Ugonna Fakile, Consultant Haematologist, Oncologist and Stem Cell Transplant Physician at Lagos University Teaching Hospital (LUTH), explained that sickle cell disease affects the way blood carries oxygen in the body.

“When someone has sickle cell disease, the red blood cells become hard and take a sickle shape. These cells can block blood vessels and reduce oxygen supply,” she said.

She added that the condition can cause severe pain and other health problems.

“It can lead to stroke, kidney problems, chest complications, vision problems and damage to different organs,” Fakile said.

According to her, symptoms often begin from about six months of age.

“Some children may have swollen hands and feet, frequent infections and severe anaemia,” she said.

Experts therefore continue to stress the importance of accurate genotype testing, newborn screening and early treatment.

However, for the Ponfas, the diagnosis came with another challenge; the cost of keeping their child alive.

Since their son was diagnosed, the family spends about N68,500 every month on routine care.

The money goes into medicines including Hydroxyurea, folic acid, supplements and pain management drugs.

This does not include emergency hospital visits, blood transfusions, laboratory tests and transport costs.

With Nigeria’s minimum wage at N70,000, the monthly treatment cost takes almost an entire salary.

“You no longer budget only for food, rent or school fees. You begin to calculate your child’s survival alongside every other household expense,” the couple said.

They added that they now rely on savings, support from relatives and sacrifices to continue treatment.

Their story mirrors the reality of many families living with sickle cell disease.

Beyond the financial burden, patients also face physical and emotional challenges.

Mr Eno Bassey, Founder of Support for Sickle Cell Nigeria and a person living with the condition, said sickle cell requires strength and constant care.

“Living with sickle cell is not just about surviving pain. It is about constantly fighting to live a normal life,” he said.

Bassey said many patients struggle with pain crises, tiredness, stigma and difficulties with school, work and relationships.

He also raised concerns about the misuse of pentazocine, a strong pain medicine sometimes used during severe crises.

“I am undergoing rehabilitation after developing dependence on the medication,” Bassey said.

He called for improved pain management, rehabilitation and mental health support for people living with sickle cell disease.

Fakile warned patients against using pain medicines without medical supervision.

“Pain crises should be managed under medical supervision. Dependence on opioid medications can create additional health complications,” she said.

In spite of the challenges, advances in treatment continue to offer hope.

Bone marrow transplant can cure some patients, while newer gene therapies are showing promising results globally.

However, these treatments remain too expensive and unavailable to many Nigerians.

Recognising the scale of the challenge, the Federal Government has increased efforts to improve prevention, diagnosis and treatment.

At the 2026 World Sickle Cell Day event in Abuja, the Coordinating Minister of Health and Social Welfare, Prof. Muhammad Pate, described sickle cell disease as a major public health concern.

Represented by the Permanent Secretary of the ministry, Ms Daju Kachollom, Pate said many deaths could be prevented through early diagnosis and proper treatment.

The government is expanding newborn screening programmes, strengthening sickle cell treatment centres and improving access to modern diagnostic tools.

Prof. Obiageli Nnodu, a sickle cell expert, said thousands of newborns have already been screened in the Federal Capital Territory.

She added that improved training of healthcare workers and partnerships among stakeholders are helping to strengthen care.

For the Ponfas, however, the challenge remains immediate.

Every month, they return to the pharmacy knowing they must find money for another supply of medicines.

For thousands of Nigerian families living with sickle cell disease, survival has become a monthly calculation.

Experts say reducing the burden will require reliable genotype testing, wider newborn screening, affordable medicines, stronger health insurance coverage and sustained investment in specialised care.

Until then, many families will continue to bear the heavy cost of living with a disease that can be detected early and better managed. (NANFeatures)

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