By Munyal Manunyi
In this investigation, Munyal Manunyi digs deep into the pains of sickle cell patients, lapses of medical labs, and the failure of the regulators to enforce high medical standards in protection of the people living with sickle cell anemia in Nigeria.
When 44-year-old Benita Zacks (not her real name) was preparing for her wedding 11 years ago, she never imagined that a simple laboratory error would define her family’s destiny.
Frozen in her doctor’s office years later, hands trembling and heart pounding, she struggled to process the news that her three-year-old daughter, Princess, was living with sickle cell disease.
“Seeing her go through that pain is more than the pain itself,” she said quietly, her voice breaking.
Mrs. Zacks’ ordeal began in 2014 at Jimeta Clinic and Maternity, Adamawa State, where she took a genotype test before her wedding. The result was AA, while her fiancé’s was AS. Convinced they were safe, they went ahead with their marriage.
But in June 2024, Princess began waking up at night in pain, crying, her joints swollen. Tests revealed later she was SS. Shocked, the couple took fresh genotype tests at different facilities and discovered Mrs. Zacks herself was AS.
To verify, this reporter funded a repeat test at the same Jimeta Clinic in August 2025. This time, her result read AS, confirming the tragic error that condemned her child to lifelong suffering.
A repeat test funded by the reporter for verification purposes at the same Jimeta Clinic and Maternity, Yola, showed AS genotype.
“I am a mother in search of anything that will help my beautiful Princess. Before I got married, my genotype showed AA. I never imagined having an SS child,” she lamented.
The confusion deepened.
Seeking more clarity, on 29th January 2026, Benita took Princess to State Specialist Hospital, Yola, where another genotype test was conducted. The result stunned her again: Princess’ genotype came back AA, contradicting the earlier SS diagnosis.
Still searching for certainty, mother and daughter repeated the tests again on February 25, 2026 at Modibbo Adama University Teaching Hospital, Yola. This time, Benita’s result read AS, while Princess’ came back SS.
Three different facilities. Conflicting outcomes. A child’s life hanging between laboratory verdicts.
Beyond her heartbreak, Benita blamed both the laboratory and the church that officiated her wedding for failing to mandate genotype testing.
“The church never asked me to do that test. All they cared about was pregnancy. Genotype is the real issue; they should make it mandatory and create awareness.”
When contacted on October 7, 2025, Mrs. Paulina Dzarma, owner of Jimeta Clinic and Maternity, denied responsibility for the error.
“That report is not correct! You cannot bring a test done in 2014 and start talking about it now. Why didn’t she bring it up then?” she said defensively.
Asked if the clinic’s records could verify the test, she replied, “I cannot locate the register. The people who worked then are gone. I don’t have any information about this.”
Her dismissive tone underscores a recurring tragedy, lives ruined by laboratory negligence and weak regulation.
A Regulated System in Theory, A Broken One in Practice
The National Secretary of the Association of Medical Laboratory Science of Nigeria (AMLSN), Abdulsalam Yakubu, insists laboratory practice in Nigeria is strictly regulated.
“Yes, the practice of medical labs generally is a regulated practice,” he said, explaining that the Medical Laboratory Science Council of Nigeria (MLSCN) licenses and monitors practitioners.
According to Yakubu, anyone practicing as a medical laboratory scientist must pass the council’s examinations and meet all regulatory requirements before being licensed. “If you are not a medical lab scientist, you are not licensed to practice,” he said.
Technicians, he added, are required to work under the supervision of certified scientists, particularly in tertiary and general hospitals.
He explained that practitioners must earn 10 credit units under continuous professional development before license renewal. And laboratories are expected to follow strict quality management systems and standard operating procedures.
He said, “If you are found wanting, the council has the right to sanction your practice or sanction you as an individual.”
However, he acknowledged widespread abuse of these standards, particularly in private facilities. “You will see a situation where the medical doctor wants to get the tip in. Instead of getting a scientist, you might decide to get a technician,” he said.
In more troubling cases, Yakubu revealed that some individuals parading as laboratory technicians are neither trained nor certified. “Most of the time, patients wouldn’t know the difference,” he warned.
He admitted that while government hospitals generally maintain oversight, staffing shortages and unemployment have created loopholes, especially in state hospitals and primary health centres, “In most cases, some of them are not even licensed by the council to do what they are doing,” he said.
The council, he noted, periodically shuts down non-compliant labs, but enforcement remains difficult in a large country with limited manpower.
When asked for data on laboratory sanctions and shutdowns, the MLSCN said it could not immediately provide nationwide figures. However, its Acting Registrar and Chief Executive Officer (CEO), Dr. Donald Ibe Ofili, said a statewide inspection in Delta State last year led to the closure of several non-compliant laboratories.
He said any lab that’s “not registered and they are not operating according to standards, not managed by a professional who is licensed by the council, that lab will receive a shutdown!”
Benita’s case illustrates exactly what Yakubu describes; conflicting genotype results from multiple facilities, unclear record keeping, and no visible accountability.
Meanwhile, available enforcement records on the internet show that Nigeria has faced repeated breaches in medical laboratory regulation over the years, although there is no publicly documented nationwide database showing the total number of laboratories shut down.
In 2006, MLSCN reportedly shut 180 of 350 laboratories inspected across six states for failing to comply with regulations, 15 laboratories sealed in 2015 in Abuja, while 20 were reportedly shut down across 10 states in 2018, for operating below standard.
And in 2021, five laboratories were closed and 19 sealed in Ogun State, with two people arrested for prosecution, while 12 laboratories were shut down in Akwa Ibom. In 2022, four laboratories were closed and 34 sealed in Osun State over regulatory breaches.
In 2025, MLSCN sealed facilities in Lagos and Ogun for operating without proper registration and qualified personnel. One facility in Ogun State had reportedly been investigated after allegedly issuing a patient’s genotype as AA instead of SC.
The records point to recurring problems including unqualified personnel, unlicensed laboratories, poor quality-control systems, inadequate facilities and incorrect test results, reinforcing concerns that weak laboratory regulation can have serious consequences for patients, particularly those seeking genotype testing.
However, these figures cannot be added together as the total number of laboratories shut down nationwide, because there is currently no single publicly available national database that tracks all laboratory closures in Nigeria over time. Some figures are national/aggregate reports covering several states, while others are state-specific enforcement exercises. And terms such as “closed,” “sealed” and “shut down” are used differently across reports.
For example, the 180 laboratories shut down in 2006 were among 350 facilities inspected in six states, but the individual states were not identified in the material available. Also, the 20 laboratories reported shut down in 2018 were spread across 10 states, but those states were not specified.
Therefore, available enforcement records show repeated laboratory closures across Nigeria.
The records nevertheless reveal a persistent pattern of regulatory breaches, including unqualified personnel, lack of professional registration, poor laboratory standards, inadequate quality assurance, illegal operations and, in at least one documented 2025 case, an alleged wrong genotype result.
However, the 2025 Akure case directly connects laboratory enforcement with the central issue of genotype misdiagnosis. According to Diagnostic News Reporters, MLSCN and professional bodies inspected Excelmed Medical Diagnostic Services following a complaint that a client’s genotype had been reported as AA instead of SC. The facility had already been sealed by the Ogun State Ministry of Health. Investigators reportedly found that its owner was not a medical laboratory professional, that there were no licensed laboratory staff and that the facility had no record of registration with MLSCN or the Ogun State Ministry of Health.
This case provides a powerful bridge between Benita Zacks/Princess’ case, the warnings from Abdulsalam Yakubu, and the broader regulatory evidence.
It demonstrates that genotype errors are not merely theoretical concerns. Regulators have encountered a laboratory where a patient’s haemoglobin genotype was allegedly reported incorrectly and subsequently found significant professional and regulatory violations.
Mr Abiola Balogun, from Lagos, shared a similar experience. In 2015, a healthcare centre at Dopemu in Kemu, Agege local government area told him he was AA. Relieved, he married his AS fiancée. Their first son was born with sickle cell disease.
“We just noticed he’d be crying overnight and restless,” he said. “That was how our struggle began.”
Their stories expose a deeper national crisis, an unchecked laboratory system where lives hinge on faulty results.
The Sickle Cell Advocacy and Management Initiative (SAMI), a Lagos-based nonprofit, says such errors are rampant in private labs due to poor technical standards.
“That’s a big issue,” said Abayomi Oyelami, SAMI’s communications officer. “The commonest test, haemoglobin electrophoresis can be fraught with errors. Many people think they’re AA all their lives until a child’s crisis reveals the truth.”
A study by the National Institutes of Health found that 54.6% of respondents reported receiving incorrect genotype results, with private facilities responsible for 73.5% of those errors.
Dr. Alayo Sopekan, Director of Non-Communicable Diseases at the Federal Ministry of Health, partly blamed patients for relying on unqualified private labs and failing to cross-check their results.
“The first question I always ask is: where did you do the test?” he said. “Government hospitals have qualified staff and re-certification systems. Such errors are reduced to the barest minimum there.”
Responding to questions about laboratory oversight and which agency is in charge of issuing certificates, Dr. Sopekan said the licensing and regulation of medical laboratories are handled by the MLSCN, an agency under the Federal Ministry of Health. According to him, the council issues practice licences, monitors compliance with professional standards, and disciplines laboratories or practitioners found guilty of misconduct.
Yet, Benita’s multiple test contradictions; AA, AS, SS show that even repeated testing does not always guarantee clarity, leaving families emotionally shattered and medically uncertain.
Dr. Sopekan said some individuals deliberately forge genotype results to enable marriages despite incompatibility.
“They will forge the report to match their partner’s genotype. When they start having children, that’s when the truth surfaces.”
Pressed for evidence to support his claim that some individuals forge genotype results to facilitate marriage, Dr. Sopekan said the ministry receives reports of such cases, although he declined to provide specific examples, citing medical ethics and confidentiality. He maintained that the practice is widely known and, alongside human error and varying skill levels among laboratory personnel, informed the government’s shift toward point-of-care screening technologies to improve accuracy and reduce opportunities for manipulation.
His remarks highlight the double-edged crisis; negligence from professionals and ignorance or denial from the public.
Can Genotype Change Over Time? Experts Say No
Dr. Ibrahim Musa, consultant haematologist at Aminu Kano Teaching Hospital and winner of the 2021 American Society of Hematology Global Research Award, dismissed widespread myths about genotype changes.
“You don’t have AA, and it changes to AS without scientific intervention. Wherever you see two different results, one must be an error. Superior tests like HPLC or Isoelectric Focusing are more accurate,” he said.
He added that genotype could only change through bone marrow transplant or gene therapy.
“Anyone claiming otherwise is a scam, your genotype is part of your genetic copy.”
‘Suicide on My Mind’: Voices of Pain and Survival
Across Nigeria, thousands live daily with the agony of sickle cell disease. Their stories are stories of resilience, despair, and survival.
Magdalene Musa, former Miss Taraba State University and founder of the Magdalene Musa Foundation, also lives with the disease.
“Sickle cell (disease) is difficult. Sometimes I want to ask for an injection that would just kill me,” she said.
Diagnosed at age 10, she remembers crawling while her friends played.
“I could be in a full-blown crisis and they would give me paracetamol because nobody understood my condition,” she recounts
She takes her drugs daily but still lands in hospital frequently.
“I was just discharged yesterday. I bathed with cold water and the crisis started again,” she laments.
In Gombi, Adamawa State, Magdalene Ezekiel, 26, sits quietly on a stool in her family compound. Once a promising student, her dream of becoming a doctor died when sickle cell complications left her limping.
“I did a scan and was told my bones were broken around my hips, and I didn’t fall. I’m not enjoying my life. This sickness has stopped me from doing anything. I’m begging God to make the government listen to us,” she said in tears.
Her 89-year-old father, Ezekiel Istifanus, can no longer work.
“It’s my wife who farms to feed us. We stopped hospital treatment 11 years ago because we couldn’t afford it,” he said.
When Courage Isn’t Enough: The Death of Onome Ejiro
Before her death in June 2025, Edhughoro Ejiroghene Onome, known as Ejiro on Facebook, turned her suffering into advocacy. A journalist and sickle cell warrior, she shared raw videos of her pain.
In one of her last posts, she sobbed:
“You people should save my life for me. I cannot deal with this… please, that’s N4 million.”
Ejiro’s fight ended weeks later, despite her courage and pleas.
Her friend’s tribute read: “To think that sickle cell, a battle you fought with such unwavering courage, has finally taken you from us, is almost too much to bear.”
Her death, and that of Joy Mari Wujat, a 27-year-old lawyer and mother who died the same week, reignited public outrage over Nigeria’s inadequate sickle cell care.
Joy had shared her struggles online: “There are days I spend the whole day with my son in the hospital… It’s such a difficult life.”
The Pain of Parents – ‘I Wish I Never Married My Husband’
For Rahatu Kefas, a soldier, the pain cuts deeper. Both she and her husband, also in the Nigerian Army, are AS carriers. Two of their daughters were born with sickle cell.
“I wish I never got married to my husband because of what my children are passing through. I lost my daughter on January 18, 2025, at the age of 12,” she said sadly, adding that the Nigerian army never included the test as a prerequisite for recruitment.
Her words echo those of countless parents who never knew their genotype before marriage or were misdiagnosed.
Nigeria bears the highest global burden of sickle cell anemia. It is considered the epicentre of the disease worldwide, with a significant number of people living with the disorder and a high rate of new cases annually.
According to the Sickle Cell Foundation Nigeria (SCFN), over 40-50 million Nigerians (about 25 per cent of the population) carry the sickle cell gene (Hb AS).
WellaHealth, however, estimated that 4 to 6 million people in Nigeria live with Sickle Cell Disease (Hb SS or Hb SC), while the SCFN reports that approximately 100,000 to 150,000 babies are born with the disease each year and half to 90 per cent die before their fifth birthday.
The Crushing Cost of Care
At 59, Shehu Olaito Mohammed, an Abuja accountant and sickle cell patient, understands the economics of survival.
“There are routine drugs – folic acid, paludrine, vitamin C, B complex, and hydroxyurea. You need N20,000 to N30,000 monthly for those alone. But when a crisis comes, the costs multiply,” he said.
He noted that even with NHIS, patients still pay for gloves, disposables, and consumables.
“It would have been better if hospitals had a directive not to burden sickle cell patients at critical moments.”
‘We Spent ₦1.3 Million to Save Our Son’
In Maraba Loko, Nasarawa State, John Ishaya, a vulcaniser, and his wife Monica who live in an uncompleted building, have a son named Destiny, living with sickle cell.
“I didn’t even know we were supposed to do genotype tests before marriage. If I had known, I could have done it,” Ishaya said.
When Destiny was two, constant sickness led to months of hospital stays and blood transfusions.
“We spent N1.3 million. I had to sell my plot of land,” he said.
With a monthly income of N20,000, the family depends on donations.
“If we could reverse time,” he said, “this marriage wouldn’t take place. The suffering is too much.”
Like Destiny, many patients, crushed under the weight of soaring treatment costs, are now turning to social media as a last resort, publicly appealing for donations to stay alive.
An independent Meltwater analysis shows the scale of this desperation: between October 2023 and September 2025, at least 412 Nigerians took to X alone to solicit funds for treatment of the disease.
The data paints an unsettling progression. Between October 2023 and September 2024, 170 patients issued crowdfunding pleas. But the situation worsened in the following year, with 242 new appeals recorded between October 2024 and September 2025 – a noticeable spike that reflects both deepening financial hardship and widening gaps in Nigeria’s healthcare safety net.
Mrs Briskillah Titus, staff of Adamawa State University, is the mother of Solomon, a 28-year-old sickle cell patient left deaf and speech-impaired after years of antibiotic treatment.
“When he was three months old, his hands and legs started swelling. By the time we got the diagnosis, both my husband and I discovered we were AS,” she recalled.
Solomon can barely walk now, saying, “We’ve sold everything we ever had. We owe the clinic and pay in installments.”
In Gombi, Benjamin Kayawan, 27, works at a computer centre. He thought he was AS, but a test sponsored by this reporter showed he was SS.
“My body gets hot, my eyes turn yellow, and I need blood transfusions. I earn N15,000 a month and spend most of it on drugs,” he said with pity.
He pleads for government support noting, “If they can even help us buy drugs weekly or monthly, we will be grateful.”
Expert Warnings and the Way Forward
Inarguably, the National Library of Medicine Nigeria, corroborated the earlier data, that Nigeria remains the most sickle cell endemic country in sub-Saharan Africa, with 2-3 per cent of the population affected.
Experts warn that until Nigeria strengthens its health regulation, invests in laboratory quality assurance, and mandates genotype testing before marriage, preventable tragedies like Benita’s will persist.
Dr. Sopekan stressed the need for public enlightenment.
“Couples must be encouraged to do genotype tests in certified facilities and cross-check results before making life decisions,” he said.
A Cry for Accountability and Hope
Every story in this investigation, from Benita’s heartbreak to Ejiro’s death, exposes not only the human cost of laboratory failure but also the government’s slow response to a preventable crisis. For Benita, the battle continues.
“I haven’t told anyone in my family yet. I discovered it last June. It’s why I don’t want my name mentioned directly. But I’ll keep fighting for my princess,” she said.
As Nigeria’s health system grapples with misdiagnosis, weak regulation, and poverty, sickle cell warriors continue to endure, brave souls waiting for a nation to finally listen.
This report was first published by Development and Corporation (D+C) on 4th August 2026
