When sickle cell cure costs a fortune, these Nigerian students are choosing free prevention

ABJUA, NIGERIA — In September 2024, the Lagos University Teaching Hospital (LUTH) achieved a landmark in Nigeria’s healthcare history when it announced a successful bone marrow transplant for a person living with Sickle Cell Disease (SCD).

However, for many Nigerians, the breakthrough remains beyond reach. Stem cell transplantation, currently regarded as the only widely established cure for sickle cell disease, costs about $15,038 to $22,743 (approximately N21 to N31 million). Even among those who can afford it, eligibility requirements and attendant risks and complications of organ transplant mean it is not a universal solution.

“Stem cell transplant has proven to cure sickle cell disease,” said sickle cell warrior and nurse, Peter Adebiyi. “But the cost is jaw-breaking. It is not something that is accessible to the average man,” he added.

With a cure out of reach, Nigeria finds itself at the epicenter of a global crisis. According to the World Health Organization, 7.74 million people globally were living with Sickle Cell Disease in 2021, with 515,000 new births annually, nearly 80% of which occur in sub-Saharan Africa. A 2023 Lancet study revealed that Nigeria is one of just six countries consistently exceeding an incidence rate of 2,000 per 100,000 live births since 2000, accounting for 44% of total global births with SCD.

Earlier this year, a study led by Dr. Davies Adeloye of Teesside University, United Kingdom, reaffirmed that the burden remains heavily concentrated in West and Central Africa, naming Nigeria as a primary zone where urgent and targeted investments are required.

SCD is a hematological disease inherited by offspring when both parents carry the sickle cell trait. It results in an abnormality in the oxygen-carrying protein, hemoglobin, found in red blood cells and the cells become sickle-shaped under certain circumstances. SCD problems start in infancy. A number of health problems may develop, such as attacks of pain known as sickle cell crisis. Anemia, swelling in the hands and feet, bacterial infections, and stroke may also occur.

Where cure remains inaccessible for many families, prevention has become an increasingly important strategy.

At Osun State University, a student-led initiative is attempting to address the problem long before marriage, pregnancy, or parenthood.

Taking Prevention to Future Parents

On May 25, 2026, students at the University College of Health Sciences gathered for free genotype screening and counseling organized by The Adejumo Sickle Cell Alliance (TASCA) in partnership with the College of Health Sciences Students’ Association.

The program targeted a group often overlooked in prevention efforts, young adults approaching their reproductive years.

“The Adejumo Sickle Cell Alliance has consistently championed advocacy and awareness creation on sickle cell disease,” said Daniel Adejumo, the founder and student of the College. “However, recognizing that advocacy alone is insufficient, TASCA decided to bridge this gap by bringing direct genotype testing to young people so they can make informed decisions regarding intimate relationships from a primordial level.”

The intervention offered free genotype testing and counseling on genotype compatibility, helping students understand the implications of their results before making future relationship and marriage decisions.

For some beneficiaries, cost had previously prevented them from getting tested.

David Falayi, a 400-level medical student, admitted he had never checked his genotype before the program. “I always thought it was something stressful and costly, and I wasn’t bothered much about it,” he said.

That changed after participating in the screening.

“I want to start planning my love life, I don’t want to give birth to an SS all in the name of love. You are literally saving the life of your unborn child and even stress on the parents (sic).” He added why he opted for the screening.

Oyinlola Oladele, who coordinated the project execution in her comment, said, “One of the most prevalent knowledge gaps we observed was a lack of understanding of why knowing one’s genotype matters personally and in the context of relationships and family planning.”

She continued, “Many students were unaware of the genetic implications of AS × AS crossings, and some had limited knowledge of the difference between being a sickle cell carrier and having the disease itself.”

The Human Cost of Sickle Cell Disease

For people already living with the condition, prevention carries a deeply personal meaning.

Sikirulah Sofiyah, a final-year Pharmacology and Therapeutics student living with SCD, described years of recurring pain crises, hospital admissions, and academic disruptions.

“There have been times when I had to miss classes, postpone important activities, or spend days in the hospital because of my health,” she said.

She recalled occasions when illness affected her academic performance despite significant effort.

“In my daily life, I have heard the words ‘you can’t’ more times than ‘you can.’ People focus on the limitations that come with sickle cell disease rather than the possibilities.”

Looking back, she wishes there had been greater awareness about genotype compatibility and stronger policies encouraging genotype testing and counseling before marriage. Her message to young people is straightforward: “Know your genotype early.”

“Living with SCD is something unpredictable. The pain crisis and the complications that come with it are unpredictable. You know, having to sleep at night healthy and waking up with [a] crisis the next morning. It has affected my daily activities a lot. You know, having a planned day ahead and you waking up to a pain crisis, you know, that day might not go the way you planned it, and the goal for that day might go unfulfilled. So, that’s how it has affected me,” Nurse Adebiyi said while recounting his experience living with SCD.

More Than Awareness

TASCA intervention was not built overnight.

According to Adejumo, TASCA GENOINVASION, under which the outreach was conducted, was conceived in early 2025 and later received support through a grant from the Global Youth Mobilization Fund, supported by the European Union.

The organization assembled an 11-member implementation team and partnered with the College to reach students.

Since its establishment in 2024, TASCA says it has reached more than 6,000 people through school visits, market outreaches, NYSC camp engagements, and awareness campaigns.

Its latest program provided free genotype testing for 150 students while reaching more than 200 students with awareness messages.

Volunteers say the outreach also exposed persistent misconceptions.

One misconception frequently encountered, according to advocacy team lead Oluwatomiwa Adeniji, was the belief that people living with sickle cell disease do not live long. The students were, however, eager to learn, according to her.

What Are the Limits?

Like many grassroots solutions, the intervention faces important constraints. Although organizers wanted to screen more students, funding limited the program to 150 beneficiaries.

Adejumo said the team initially considered rapid diagnostic testing but abandoned the option because it exceeded available resources. “Even though we wanted more people to benefit from this intervention, we had to limit it to 150 so as to fit our budget (sic),” he stated.

Questions also remain about the long-term impact. Some participants believe sustained engagement is necessary.

“We can’t just assume that people know. We need to repeat it for as long as possible till it sticks,” said Oluwafolafunmi Osonaike, a 400L student of the Department of Public Health, who participated in the program to verify her genotype status.

Another limitation is ensuring accuracy. Adebiyi emphasized the importance of confirmatory testing, noting that laboratory errors can have life-changing consequences for families making reproductive decisions.

A Model Worth Replicating?

Despite its limitations, the initiative demonstrates how relatively low-cost prevention efforts can address a public health challenge whose cure remains financially inaccessible to many Nigerians.

The College of Health Sciences Students’ Association says it hopes genotype awareness programs will continue through future partnerships. The president, Teniola Olasunmoye, believes the intervention arrived at the right time.

“Young people are approaching the stage of making lifelong relationship and marriage decisions, so knowing their genotype early helps them make informed choices,” he said.

The program will not eliminate sickle cell disease overnight, nor can it replace broader government action on genetic counseling, public education, and healthcare access.

But in a country where treatment can cost tens of millions of naira, a free genotype test may offer something more attainable: the chance to prevent the disease before it begins.

Overcoming Barriers to Testing and Accurate Diagnosis

A public health physician, Dr. Adeola Lawal, described genotype awareness as a critical tool in reducing the burden of sickle cell disease in Nigeria. “It is very important because it is only when people are aware that you can expect them to take conscious actions to avert it,” he said.

The physician believes that lack of information and poor health-seeking behavior remain the most significant challenges. According to him, many young Nigerians simply do not prioritize genotype testing until they are preparing for marriage or faced with a personal health concern.

He said campus-based screening initiatives provide a unique opportunity to reach a population at a crucial stage of life. “Such initiatives are great because of their target population, which is aimed at catching the students young,” he stated.

The expert noted that while grassroots programs are valuable, broader policy interventions are also needed to sustain progress. He pointed to discussions around legislation that would require genotype testing for intending couples, arguing that reviving and implementing such measures could complement awareness campaigns and strengthen national prevention efforts.

In an interview with a medical laboratory scientist, Rodiat Abdulkareem, she said increasing genotype awareness must go hand in hand with strengthening access to reliable testing services.

According to her, several tests are available for diagnosing sickle cell disease and identifying hemoglobin variants. These include sickling tests, hemoglobin electrophoresis, molecular testing, and High-Performance Liquid Chromatography (HPLC).

“The sickling test is mainly a screening test that detects the presence of sickle red cells. Hemoglobin electrophoresis is most routinely used due to its availability and simplicity. It is also used to quantify the different hemoglobin variants. The molecular test is reliable as it identifies the specific mutation responsible for SCD; however, cannot be easily assessed due to cost, availability of trained personnel and equipment,” she explained.

She said laboratories have recorded increasing demand for genotype testing in recent years, particularly for premarital screening and routine medical examinations. She noted that this trend likely reflects growing awareness of sickle cell disease and genotype compatibility.

Abdulkareem identified several challenges that can affect the accurate diagnosis of sickle cell disease, including the cost of testing, limited access to equipment, quality control concerns, and inadequate infrastructure. She identified unstable electricity supply as a major obstacle to efficient laboratory operations in many parts of the country.

To strengthen sickle cell disease prevention and care, she advocated greater public awareness, improved laboratory infrastructure, and government interventions to reduce the cost of testing.

The post When sickle cell cure costs a fortune, these Nigerian students are choosing free prevention appeared first on New York Amsterdam News.