• Bone marrow transplant costs $35,000-$50,000
• 100,000 Nigerian babies die yearly
• Crisis looms with fewer than 100 haematologists countrywide

As countries commemorate the 2025 World Sickle Cell Day today, survivors and caregivers in Nigeria have raised the alarm on the growing burden of mortality and fatality, especially worsened by the high cost of care, or the lack of it.

Despite healthcare innovations and attendant succour in sickle cell care globally, Nigeria continues to be at the receiving end of the global scourge, with 100,000 sickle cell babies dying short of their fifth birthday yearly.

This has led health practitioners to urgently call for aggressive investment in new research to develop affordable treatments, particularly for low-income countries like Nigeria.

Already, the federal government has adopted universal newborn screening to identify cases early and established six SCD centres equipped with the requisite tools and consumables.

Nigeria has also partnered with an indigenous pharmaceutical company to provide access to Hydroxyurea, a medication that helps prevent pain crises and hospitalisations for children with SCD.

But a lot more still needs to be done for a reprieve, especially at a time of rising interest in transformative therapies, such as blood and bone marrow transplants and gene therapy, and a potential cure in other countries.

Nigeria is not entirely new to innovations. In 2024, Nigeria achieved a breakthrough at the Lagos University Teaching Hospital (LUTH), Idi-Araba. Working with the NGO Sickle Cell Foundation of Nigeria, LUTH doctors successfully performed the first bone marrow transplant (BMT) in Nigeria and West Africa.

This groundbreaking achievement involved two patients: one paediatric and one adult. Currently, one patient has an AA genotype due to an AA donor, while the other is AS from an AS donor, offering new hope to individuals living with SCD.

Despite this milestone, experts have expressed concerns about the high cost of bone marrow transplants and gene therapy, compounded by the non-inclusion of comprehensive SCD treatment in the national health insurance scheme. These factors restrict access to only the privileged few.

While Nigeria has yet to commence gene therapy procedures, data from the session on curative treatment during the recently concluded 5th Global Congress on Sickle Cell Disease in Abuja revealed that bone marrow transplants in Nigeria cost between $35,000 and $50,000, while gene therapy costs about $40,000 in India.

Jimi Olaghere, a 39-year-old American-born Nigerian cured of SCD through CRISPR gene-editing therapy in the United States four years ago, advocated for newborn screening and emphasised the need for diverse treatment options, given the varying impacts of SCD on individuals.

“Some people have it quite severely, some people have mild versions, which is still painful, and some people have a version where it’s extremely mild; maybe they go to the hospital once a year. So, my dream is that one day, sickle cell will have lots of options to take care of everybody. Having a variety of options is a holistic way to one day eradicate sickle cell disease, from gene therapy to pills to blood donations, all of that.”

Sharing his experience with The Guardian, he described sickle cell disease as a global tragedy, likening life with the condition to being in a constant battle.

“It is a war; I guess that is why most of us are called warriors. It feels like this never-ending war where you’re just fighting different battles every day—from chronic pain to mental health challenges to organ damage. It feels like sometimes your body is almost a ticking time bomb, and your organs just start to fail one after the other, from your lungs to your gallbladder to your kidneys. The disease literally just robs you of everything. Sometimes it feels like handcuffs, holding you back to the bed, and you just sit there watching life pass you by. Thankfully, it seems, or it is possible, to end with bone marrow transplant and gene therapy.”

Olaghere described gene therapy as life-changing. “It wasn’t easy; it took nearly a year and included chemotherapy, which caused hair loss. But if you’ve lived with sickle cell disease, you can handle the therapy.”

“Today, I have no more crises or pain. I haven’t been in pain since I had the therapy. I haven’t gone to the emergency room or been hospitalised. It’s been really transformative. It has completely changed my life.”

Jimi, who described the cost of gene therapy as prohibitive and inaccessible, revealed to The Guardian that the gene therapy he got costs $2.3 million in the United States, but he got it for free through a clinical trial.

He said, “The cost is prohibitive, the one I got cost $2.3 million, and that’s in the U.S, but I got it for free through a clinical trial. It is also inaccessible in low-resource settings and sub-Saharan Africa; it’s virtually impossible to get it right now. But the good news is that there are so many things in the pipeline that will eventually bring this therapy to the patient populations that are in desperate need of it.”

In an interview with The Guardian, Director of the National Excellence for Sickle Cell Disease Research and Training and Co-Chairperson of the Global Congress on SCD, Prof. Obiageli Nnodu, disclosed that efforts are being made to develop a framework for gene therapy in high-burden countries, including Nigeria, while engaging the Global Gene Therapy Initiative network to work towards this.

Nnodu, who served as the WHO AFRO Consultant on Gene Therapy in 2022, underscored the need to invest and push for health insurance so that all individuals with sickle cell disease can access the interventions they need, regardless of where they live.

She emphasised the importance of fostering collaboration, driving innovation, and spotlighting effective solutions for managing and ultimately eradicating SCD.

Nnodu noted that the major challenge facing sickle cell treatment in Nigeria is ignorance about the disease among many stakeholders due to the absence of universal newborn screening. Many parents do not know that their babies have sickle cell disease, leading to deaths in infancy and under five years, as the interventions to save babies’ lives are consequently not applied.

She added that information about the management of sickle cell patients is not properly disseminated to healthcare workers, who are, in turn, reluctant to embrace and use hydroxyurea, a disease-modifying drug available to reduce the frequency of crises, malaria, and blood transfusions.

She said, “More importantly, ignorance about the genetic nature of the disease and that it is present when individuals who are carriers, i.e., AS + AS or AS + AC, procreate. In each pregnancy, there is a 1:4 chance that they will have a baby with SCD regardless of the outcome of previous pregnancies. Such ignorance makes them reject the result of newborn screening, saying that their babies look healthy and there is nothing wrong with the baby.”

“There is ignorance about government policies for the control and management of SCD in order to take advantage of such. Ignorance about the fact that these measures I have outlined can significantly impact the clinical course of the disease to make it mild.”

Consultant Paediatric Hemato-Oncologist and Team Lead for the LUTH/SCFN bone marrow transplant programme, Dr Seye Akinsete, said that while Nigeria recently marked a significant milestone with its first bone marrow transplant, determining an accurate survival rate for bone marrow transplants remains difficult due to limited data.

Speaking with The Guardian, Akinsete revealed, “The overall survival rate for the procedure in Nigeria may be difficult to compute now as the numbers are sparse and the data is not readily available.”

However, he added that globally, the survival rate stands at about 90 per cent.
Akinsete disclosed that two patients, including a paediatric case, who received their first bone marrow transplants at the facility last year are alive and recovering well. Their treatment protocol involved the exchange of blood transfusions, chemotherapy, and anti-infective prophylaxis before the infusion of stem cells sourced from family donors.

He explained that the patients have not experienced further acute symptoms since the procedure, and early signs of chronic complications have reversed.

“Both patients are well and alive. They have not had any acute manifestation of the disease again, and we have witnessed a reversal of chronic complications that were setting in,” he said.

The expert also disclosed that comprehensive care is currently being administered to children at the facility. This includes routine interventions such as yearly transcranial Doppler scans, penicillin prophylaxis, the administration of hydroxyurea, and prompt pain management services.

However, Akinsete noted that affordability remains a critical barrier, as all materials required for the transplant are currently imported. He expressed optimism that the Presidential Initiative aimed at unlocking Nigeria’s healthcare value chain could ease these burdens and called for government support in subsidising sickle cell care and expanding insurance coverage to improve access and outcomes.

Also speaking with The Guardian, a Consultant Clinical Haematologist and the Medical Director of Next Haematology Medicare, Dr Folasade Adelekan-Popoola, noted that the major challenge facing sickle cell management, treatment, and cure in Nigeria is the lack of government support, as there are no initiatives to drive research or modern treatment availability.

She decried the lack of funding for indigent patients, adding that SCD is not covered by health insurance, thereby forcing most patients to pay out of pocket. She stated that with the ongoing Japa syndrome, Nigeria has fewer than 100 haematologists attending to its population.

Adelekan-Popoola, who emphasised that there is no widely available curative option yet for the condition, revealed that bone marrow transplants in Nigeria cost over N100 million. She added that the economic burden of sickle cell disease varies immensely among individuals, depending on whether the condition is mild or severe.

According to her, severe sickle cell disease exerts an enormous financial burden on caregivers and patients because those with severe sickle cell require repeated hospital admissions.

She lamented that in the entire country, there are only about five functional apheresis machines used to separate blood cells. These machines can perform automated red cell exchange transfusions; a procedure to replace sickled cells with healthy blood to address acute and chronic complications of sickle cell disease.

The haematologist explained that sickle cell disease is caused by a genetic defect within the protein that makes haemoglobin, adding that SCD is inherited from both parents.

On how to prevent sickle cell disease, the haematologist advised intending couples with the sickle cell trait to seek genetic testing and counselling services to avoid having children with sickle cell disorder.

“The first thing is awareness. Both people involved in making a child need to be aware of what causes sickle cell. If both people know that they are carriers, the next thing to know is that you have to avoid getting a child together through natural means. If both father and mother are carriers, the only logical thing to do to prevent it is not to have a child by natural means. There are other ways to get children who will not have sickle cell by selecting those genes, like with IVF.

Reinforcing the need for continued care post-transplant, a Consultant Haematologist at LUTH, Professor Titi Adeyemo, highlighted that patients typically require monitoring for up to a year due to the risk of complications such as anti-graft reactions. She noted that transplant recipients also undergo a full course of childhood vaccinations during recovery, as their immune systems effectively reset, making them as vulnerable as newborns.

Adeyemo stressed the importance of implementing newborn screening programmes, which are standard in many countries. According to her, early detection of treatable conditions like sickle cell disease can empower parents with timely information and give affected children a better chance of surviving into adulthood.

She then called for enhanced government efforts in public education on genotype compatibility and genetic counselling. While the government cannot impose restrictions on marriages, she said greater advocacy can empower individuals to make informed reproductive choices.

On her part, Prof Jennifer Adair, a faculty member at the University of Massachusetts Chan Medical School and co-founder of the Global Gene Therapy Initiative, emphasised the urgent need for Nigeria to adopt life-changing gene therapy to treat sickle cell disease.

Adair noted that Nigeria has the highest burden of sickle cell globally and highlighted the need for the country to formally adopt gene therapy with appropriate administrative structures and legislative support.

At the just-ended Global Congress on Sickle Cell in Abuja, Adair encouraged Nigerian patients to embrace curative therapies, including gene therapy and bone marrow transplants.

“Nigeria bears the largest burden of sickle cell disease globally. It’s vital that those living with the disease here understand that curative therapies like gene therapy and bone marrow transplants are real possibilities for a better future,” she said.

Addressing concerns about affordability in countries with limited healthcare funding, Adair acknowledged the high cost of gene therapy in the U.S., which currently ranges between $2 million and $3 million. She, however, noted that the figures are based on value-based pricing models rather than actual manufacturing costs.

Dr Alexis Thompson, former President of the American Society of Haematology and Chief of Haematology at the Children’s Hospital of Philadelphia, described gene therapy as an extraordinary but complex procedure and emphasised the importance of fertility preservation before therapy.

“For individuals who have not had children, we recommend harvesting and freezing eggs or sperm before the procedure. While the risk of cancer is considered low—likely below five per cent—the risk of infertility is significant enough to warrant precautionary measures,” she noted.

Thompson explained that, regarding eligibility for gene therapy, “Current clinical trials have focused on individuals between the ages of 12 and 35. However, this doesn’t mean patients outside this age range can’t benefit from future therapies.”

She noted that despite the risks, including infertility, infection, and rare cases of cancer, many patients have experienced life-changing results.
Thompson explained that not all sickle cell patients will qualify for gene therapy, noting that eligibility depends on factors such as age, severity of disease, organ health, and willingness to undergo intensive conditioning.

“This isn’t for everyone, but for many, the promise of a life without crisis pain is worth the trade-offs,” she explained. But with early screening and better interventions, more patients could become eligible over time.”