By Munyal Manunyi
“Only the wearer knows where the shoe pinches.” For Nigerians living with sickle cell disease, this proverb captures a daily struggle shaped by pain, stigma, poverty, and the relentless cost of staying alive
In Nigeria, people living with sickle cell disease endure a double burden of harsh social stigma, and crippling medical costs. Branded by an illness they did not choose, many patients are marginalised in schools, workplaces, and society, while the high cost of care turns survival into a daily struggle.
When 27-year-old Shamsiya, a civil servant and mother of one, living in Abuja, wakes up each morning, her first decision isn’t how to take care of her family, but which pain she can afford to ignore.
Between the whispers that she is “too fragile” to do certain office tasks even when she’s capable, and the endless drugs her family struggles to pay for. Shamsiya’s life as a sickle cell patient in Nigeria is a daily negotiation for dignity.
Childhood Marked By Fear, Misdiagnosis And Trauma
Shamsiya’s ordeal began in childhood, worsened by ignorance and repeated misdiagnosis. Growing up, her frequent illness led relatives to brand her a “Jinn” – an evil spirit, and was treated as one.
“People advised my mother to take me to the riverside,” she recounted, adding: “They said if I was truly possessed, I would stand up and walk into the river and never return.
“And since it wasn’t what was disturbing me, my mom was hiding to see if I’d stand up and go. But I didn’t, I was just looking out. I was traumatised and confused. I really suffered at that stage.”
Instead of medical care, she was subjected to traumatic spiritual rituals; smoke blown into her nose, substances rubbed on her body, visits to “mallams” and herbalists. Despite her worsening condition, she was twice misdiagnosed as having genotype AA.
It was only after her family relocated to Abuja that she received a proper diagnosis of SC genotype at the Family Health Care Centre in Dutse-Makaranta, later confirmed by the Federal Medical Centre, Jabi.
In her words: “I was misdiagnosed since I was a child by a teaching hospital in Kaduna called Nursing Home. Then another, a private hospital, Mamo Memorial Hospital. I’ll send you the diagnosis result because I still have that of the private hospital, I don’t have that of the Nursing Home.”
“They See Us As Half Humans”
Even after diagnosis, stigma followed Shamsiya into adulthood. In her neighbourhood and workplace, her condition became a reason to side line her.
“It normally disturbed me before, I do look down on myself. I’ll go back home, crying, looking at the mirror and thinking; ‘God, why me? Why is it that you don’t like me? Why are you wicked to me alone?’
“It disturbed me that I didn’t even want to go to work again, I didn’t even want to hang out with people because of how they see us, as half people. As if we are not complete humans. That we don’t function like other humans,” Shamsiya said tearfully.
At work, colleagues lobby for prestigious assignments while quietly discrediting her. “They say, ‘That one is sick, she can’t cope.’ Even when you know you can perform better than them.”
Initially, she stayed silent. Now, she pushes back: “I tell them, ‘give me the work. If I fail, then remove me’. They’ll try to use that sickness to weigh you down. To deprive you of your work schedule.”
Shamsiya’s pain also goes beyond her office walls, because stigma also comes from unexpected places. Some patients with SS genotype dismiss those with SC as “not real sicklers. Even in your family, people will be telling you that you’re pretending. You are not even a complete sickler, whereas we go through the same pain, the same drugs, the same treatment,” Shamsiya said.
During her last crisis, her leg pain was so severe that doctors advised her to use a wheelchair. But her most painful encounters happen in public. “When people ask about your health loudly, just to announce that you’re a sickler, it breaks you,” she said.
Pains Pills And Poverty
While Shamsiya benefits from coverage under her husband’s National Health Insurance Scheme (NHIS), many essential drugs are not covered. NHIS gives folic acid and malaria drugs, but strong pain relievers are out-of-pocket.
“They normally have only the Paludrine and the proguanil, then the Folic Acid. But all those pain relievers that are very strong, the DF-118, the controlled drugs, DF-118, Cocodamol and the rest, we buy them ourselves. For DF-118, each sachet costs N8,500. And before the month runs out we buy it like four times. So just imagine 4 x 8,500 = N34,000 as the cost of one drug alone.
“In rural areas, many people can’t even afford diagnosis, let alone routine drugs,” she said.
During the interview, she recalled losing a young clinic companion. His mother could no longer pay for medications. “She had already lost one sickle cell child before. Poverty took the second. She’s not getting support from her partner. Now you’re getting me emotional,” she said tearfully.
Despite the deepening anguish caused by the misdiagnosis, attempts to seek accountability led nowhere. When contacted, the owner and Chief Executive Officer of Mamo Memorial Hospital, Kaduna, the facility that misdiagnosed Shamsiya, dismissed the inquiry outright.
“I don’t know you,” he said, before distancing himself from the incident. “This is nearly nine years now, and the lab scientist, I don’t know where he is anymore.”
When Income Cannot Buy Survival
Mrs Grace James, a 33-year-old married woman teaching in a private school in Borno, Maiduguri, earns N23,000 monthly as salary, while her husband, a security guard with the government earns N50,000 monthly.
Speaking in Hausa, she narrates how she foots her medical bills. Recently, her husband had to sell his phone to buy drugs for her because he wasn’t paid his salary for 5 months. And now, “They introduced a new drug, hydroxyurea. Folic acid, and antibiotics among others. This hydroxyurea is very costly. It’s sold at N6,500 and I take it daily. All our drugs are daily.
“As a private school teacher receiving N23,000, I don’t buy drugs in packs. It’s too much for me. I tell them to calculate and fetch N2,500 worth for 10 days pending when I get money to buy more. Spending N6,500 for drugs alone is not easy. My family has to feed, and we eat something that’ll build us.
“When I remove N10,000 from the N23,000 salary, N13,000 is left and I use N6000 for transportation to work. The rest is what we feed on.”
The Cost of Not Knowing
For Sam (not his real name), a civil servant in Abuja, just like most Nigerian parents, ignorance proved fatal. He and his wife did not test their genotype before marriage. They had three children, two with sickle cell disease. One died before age two.
The child’s death (a boy), prompted Sam and his family to go for a general check-up. That was when he discovered his wife is AS, even though he knew all along that he is AS, while their 11-year-old daughter is SS.
Sam is now burdened with medical bills for his daughter’s treatment. “Every month, I spend nothing less than N100,000 to N120,000 on her routine drugs alone. As a civil servant, it has not been easy,” he complained, while acknowledging his fault of not doing a premarital genotype test. He’s calling on the government’s support for families and carriers.
Understanding Sickle Cell Disease
Dr. Ibrahim Musa, a consultant haematologist at Aminu Kano Teaching Hospital, explained that sickle cell disease is inherited when both parents pass on abnormal hemoglobin S. These types of people are called sickle cell carriers.
“We have abnormal hemoglobin in the presence of normal hemoglobin, that’s AS. Then A is the normal hemoglobin, while the S is the abnormal hemoglobin. So, in the course of having offspring, unfortunately, we donate the gene that is carrying the S hemoglobin. And because according to Mendelian law of inheritance, we inherit our traits from both parents.
“One will give you one gene, another will give you another gene. So, if one gives you a gene that has S Hemoglobin and the other gives you a gene that has S Hemoglobin, then you’re going to have SS hemoglobin, which is the Sickle Cell Hemoglobin. And this type of hemoglobin is the one that is causing sickle cell disease.
There are other abnormal hemoglobins which can be inherited; hemoglobin C in the presence of hemoglobin S, hemoglobin D, hemoglobin O-Arab, others. But one must have the presence of abnormal S hemoglobin in the presence of additional abnormal hemoglobin. “So, if you do not have S hemoglobin, we cannot call it sickle cell disease,” The doctor said.
Symptoms usually appear from six months, ranging from painful crises and anemia to stroke, kidney failure, leg ulcers, and cognitive impairment.
Is Sickle Cell Curable?
According to Dr. Musa, cure is possible through bone marrow transplant or gene therapy.
Bone marrow transplant costs about $300,000 in the U.S. and $40,000 – $50,000 in Nigeria, which is approximately N58 million to N72 million. Gene therapy, recently approved in the U.S., costs around $3 million.
The consultant said these two mentioned are the sure ways of cure, “Otherwise, we can only manage the patients with drugs that we call disease modifying to which some are available, while others are still under clinical trial,” he noted.
Although there are claims that a sickle cell solution has arrived in Nigeria through Sickle Cell Foundation Nigeria (SCFN) in collaboration with Lagos State University Teaching Hospital, efforts to verify this were unsuccessful as of press time.
A Google Form shared for patients’ details was completed by this reporter without response, while the last official contacted declined to speak on record, saying he has not been briefed.
He said: “Good morning. Proceed with what? I was not given a brief on your agenda. I can’t put my name in public space when I’m not sure of what you’re trying to do.”
Globally, the standard of care for sickle cells include giving them drugs that can build their blood level, which is folic acid, and drugs that can prevent them from having infections, bacterial infection, which is called penicillin B, and drugs that can also prevent them from having malaria.
Is Sickle Cell Getting the Government’s Attention?
Dr. Musa said sickle cell disease remains under-prioritised despite Nigeria accounting for nearly half of global cases.
“Out of 300,000 children born annually with sickle cell disease, 150,000 are in Nigeria and many of them die before age five.
“These are people probably born in rural communities where there are no functional primary healthcare in place, talk less of having a standard hospital where they can be attended to. So basically, if the government wants to come in, there has to be a multifaceted approach.
“So, we don’t expect these people coming from the background of poverty to be able to shoulder expensive care for themselves,” The doctor said, while calling for free, comprehensive care, early diagnosis, and premarital genetic counselling.
Civil Society Step In
Since 2021, Mr. Shehu Olaito Mohammed, founder of SOM Foundation, has enrolled 100 sickle cell patients on NHIS
He said: “People go to chemists and receive harmful injections, but NHIS helps them access proper medical care.”
Mohammed also holds policy dialogues to tackle sickle cell issues, with the most recent one held in 2024, a National Dialogue on Better Life for People Living with Sickle cell Disorder. His organisation also carries out counselling and sensitisation programmes.
However, during counseling, he found out that some parents for reasons best known to them, don’t like disclosing their genotype or their children’s own. “Of course, people are fearing stigmatisation, but many times you tell them, look, these are the dangers in you keeping these things secret. It’s better if you confront it headlong. Let people know that this is how you are. This is what can give you confidence on your own part instead of you hiding.
“Moreover, you don’t know when you may be in need of emergency care. If people are aware that this is your health situation, they will know how to respond to you on time,” he said.
Mr Mohammed wishes to enrol more patients on NHIS, but inadequate funding remains an issue. “I’m funding from my pocket,” he said.
Policy Silence from the Senate
Attempts to obtain policy details from the Senate Committee on Health yielded no response, despite repeated follow-ups with no official position provided.
On 21 August 2025, this reporter contacted Senator Ipalibo Banigo, Chairman of the Senate Committee on Health, requesting a brief interview on policy frameworks. She referred the reporter to her Senior Legislative Assistant, Obanirene Ominike-Odisaba.
However, the aide repeatedly delayed the interview with shifting excuses, including requests for questions and travel-related reasons. In her final response, she said: “The Senate is in recess and my principal is busy with constituency duties, I may not be able to attend to your request tomorrow.”
Further attempts to reach Senator Banigo directly were unsuccessful, as she neither answered calls nor responded to messages.
On 6th August 2025, National Assembly Library Trust Fund (NALT), published that a bill for an Act to establish National Sickle Cell Institution was sponsored by Hon. Abbas Tajudeen and Hon. Ahmad Munir and has scaled the second reading. And on 22nd October 2025, This Day, published that the Senate has taken steps to establish N4.7bn sickle cell research and therapy centres across Nigeria.
Although moves are made to establish research centres across Nigeria, including The University of Abuja, alongside other international institutions, which secured over £5 million to advance sickle cell research across sub-Saharan Africa, sickle cell crisis still remains of major concern in Nigeria as patients continue to suffer.
Awareness Still Falling Short
Dr. Ayoola Olufemi Director of Health and Social Care, National Orientation Agency (NOA) in Abuja, said sickle cell disease is still a huge burden in Nigeria, as a lot of youths are not aware of their genotype.
“If you look at 40-50% of our population, it’s made up of youths. Most of these youths need to be aware about the burden of sickle cell, so that they can make informed decisions when they want to marry,” he said.
NOA, as an agency saddled with the mandate to publicise government programmes and policies, has since been using Radio/TV jingles, distributing Information and Education Materials (IEC) and social media to engage the people to know their genotype, including community sensitisation.
“Most of the people we have engaged are going back to their communities to re-orientate their people,” Dr Olufemi said.
Policy Measures By The Federal Ministry Of Health To Address Sickle Cell Disease In Nigeria
In response to a Freedom of Information letter (FOI), the Federal Ministry of Health and Social Welfare revealed in an interview that the ministry has rolled out a series of policy measures and interventions over the years aimed at prevention, early detection, and management of the disease.
According to Dr Alayo Sopekan, Director of the Non-Communicable Diseases (NCD) Control Division and National Focal Person for Sickle Cell Disease from the Ministry, Nigeria’s response to SCD is coordinated through the NCD Control Division within the Public Health Department of the ministry.
Institutional Framework And Early Policy Response
The Non-Communicable Diseases Control Division was established in 1989, with sickle cell disease formally included in national focus following a 1990 nationwide NCD survey. Findings from the survey revealed that about 25 percent of Nigerians were carriers of the sickle cell gene, a figure Dr Sopekan believes may be higher today.
“This prompted the federal government to take action,” Sopekan explained, leading to the creation of a dedicated sickle cell disease desk and the development of a strategic plan to address the growing health burden.
At the time, there was no formal policy guiding sickle cell management. Initial efforts therefore focused on awareness creation, aimed at correcting widespread misconceptions rooted in cultural beliefs and stigma surrounding the disease.
National Guidelines and Centers Of Excellence
A major policy milestone was achieved in 2010, when the federal government introduced the National Guidelines for the Prevention, Control, and Management of Sickle Cell Disease. This marked Nigeria’s first comprehensive framework for addressing the condition.
As part of this initiative, six Centers of Excellence for sickle cell management were established, one in each geopolitical zone. These centres were equipped with advanced diagnostic tools capable of identifying SCD in newborns.
Before this intervention, diagnosis often occurred only after six months of life, when fetal haemoglobin naturally declines, allowing symptoms to appear. Many affected children died before the age of five due to the absence of early intervention.
With early diagnosis now possible, comprehensive care can be initiated promptly. This includes routine and special immunisations, use of prophylactic medications, stroke-risk screening using Doppler ultrasound, and other preventive interventions.
Training and Newborn Screening at Primary Health Care Level
To expand early identification, the ministry developed training guides and desk manuals for lower-cadre health workers, particularly those serving in rural areas where most deliveries occur in primary healthcare facilities.
Health workers at this level are trained to conduct newborn screening at birth, using newer technologies that allow immediate detection of sickle cell disease as babies are delivered.
“This ensures we identify affected children early and connect them to care immediately,” Dr Sopekan said.
National NCD Policy And Sickle Cell Integration
Following the 2010 guidelines, the ministry began work on a broader National Non-Communicable Diseases (NCD) Policy, which was finalised in subsequent years. Sickle cell disease was fully integrated into this policy framework, capturing prevention strategies, treatment guidelines, workforce training, and long-term care planning.
No Mandatory Screening Laws On Sickle Cell
Despite the high disease burden, the government has not enacted laws mandating genotype screening for intending couples or job seekers. According to Dr Sopekan, this decision is driven by the need to avoid further stigmatisation of people living with sickle cell disease.
“Making screening mandatory whether for marriage, employment, or documentation will only expose affected persons to discrimination,” he warned.
He cited cases where individuals with SCD lose jobs, particularly in the private sector, due to frequent hospitalisation during pain crises. Introducing compulsory genotype disclosure, he added, would worsen exclusion and economic marginalisation.
Instead, the government advocates voluntary genotype testing through sustained public awareness, drawing parallels with HIV testing, which became widespread through education rather than coercion.
Gaps In Treatment Financing And Health Insurance
Dr Sopekan acknowledged that free treatment for sickle cell disease does not currently exist in Nigeria. While health insurance remains central to government plans for universal health coverage, many sickle cell medications and services are still not covered under the National Health Insurance Scheme (NHIS).
Even insured patients, he noted, often face drug shortages or are required to pay out-of-pocket for essential medications.
Consequently, 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 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.
To address this, he encouraged individuals and advocacy groups to organise and engage policymakers at the National Assembly, state legislatures, and gubernatorial levels, to push for expanded coverage and funding.
Preventive Approach As The Long-Term Solution
Dr Sopekan stressed that sickle cell disease often drives families deeper into poverty, draining financial and emotional resources.
“If you are poor, it pushes you further into poverty. If you are average, it drains you,” he said.
Given the economic toll, he described prevention through genotype awareness as the most cost-effective strategy. He argued that, like HIV, malaria, and tuberculosis which benefit from free screening and treatment, sickle cell disease deserves similar prioritisation, particularly as Nigeria carries the world’s highest burden.
Looking Ahead
While significant gaps remain in funding and access to care, the Ministry maintains that sickle cell interventions are achievable with sustained political will, stronger health insurance coverage, and increased advocacy.
“These are things we can do,” Dr Sopekan concluded, “and there are plans in place.”
This report was first published by Development and Corporation (D +C) on 4th August 2026.
