Health
PT HEALTH WATCH: Sickle cell disease persists in Nigeria despite decades of awareness
Every year on 19 June, the world marks World Sickle Cell Day to raise awareness about a condition affecting millions globally. Yet despite decades of public campaigns encouraging genotype testing and informed marriage decisions, Nigeria continues to record one of the highest burdens of sickle cell disease (SCD) in the world.
According to the Federal Ministry of Health and Social Welfare, the country records approximately 150,000 infants born with sickle cell disease annually, accounting for a significant share of the global burden.
While genotype awareness campaigns have become common in schools, churches, mosques and healthcare facilities, health experts say awareness has not translated into adequate care, early diagnosis or improved quality of life for people already living with the condition.
Speaking with PT Health Watch to mark World Sickle Cell Day, medical and maternal health experts highlighted major gaps in Nigeria’s response to the disease, including weak newborn screening, limited access to treatment, under-resourced primary healthcare and persistent misconceptions.
Beyond genotype awareness
For many Nigerians, discussions around sickle cell disease often focus on genotype compatibility and preventing new births affected by the condition.
However, Happiness Akinde, a medical doctor, said public health conversations must also prioritise the millions already living with the disease.
“Genotype awareness has been extremely important because it helps prevent new cases of sickle cell disease through informed reproductive decisions. However, there is a growing recognition that awareness efforts should also focus on people already living with the condition,” she said.
Ms Akinde explained that although education remains important, knowledge alone does not prevent sickle cell crises.
She noted that even patients who carefully follow medical advice can still experience painful episodes triggered by infections, dehydration, physical or emotional stress, poor sleep and other factors.
According to her, reducing the frequency of crises requires a combination of patient education, preventive treatment, reliable healthcare services and strong social support systems.
She added that conversations around hydration, infection prevention, medication adherence, nutrition, mental health, routine screenings and early recognition of complications deserve as much attention as genotype counselling.
The hidden cost of living with sickle cell disease
Beyond medical challenges, Ms Akinde noted that socioeconomic realities continue to worsen outcomes for many patients.
She said many families struggle to afford medications, transportation to hospitals and routine laboratory investigations required to monitor the disease.
Others live far from healthcare facilities or lack health insurance coverage, making regular care difficult.
“Effective management requires more than personal responsibility. It requires a healthcare system that supports patients consistently,” she said.
Essential medications such as folic acid, antibiotics, pain-relieving drugs and hydroxyurea, a disease-modifying therapy widely recommended for sickle cell disease remain inaccessible to many patients due to cost and availability challenges.
As a result, she noted, many people seek care only when complications become severe rather than receiving preventive treatment that could improve long-term outcomes.
Healthcare system gaps
Ms Akinde explained that weaknesses within the healthcare system continue to affect outcomes for people living with sickle cell disease.
She noted that primary healthcare workers, often the first point of contact for patients, may lack adequate training in sickle cell management, leading to delayed diagnosis of infections, poor follow-up care and inadequate pain management.
She added that some patients face delays in emergency treatment because healthcare providers underestimate the severity of sickle cell pain or are unfamiliar with recommended care protocols.
She also highlighted persistent misconceptions about the disease, including beliefs that crises result solely from poor self-care or that people living with the condition cannot live successful lives.
In addition, she said that some patients face stigma when seeking treatment because their pain is often doubted, while reliance on traditional remedies and delayed hospital visits can further worsen complications.
Poverty, gaps in prevention
Halimat Jimoh, a nurse and a professional midwife, reiterated that poverty, limited healthcare access and weaknesses within primary healthcare facilities contribute significantly to recurrent sickle cell crises.
“I have seen families who understand their child’s condition but simply cannot afford transportation to health facilities, medications, laboratory investigations or regular follow-up appointments,” she said.
Ms Jimoh believes one of Nigeria’s biggest failures is waiting until marriage discussions begin before educating people about genotype compatibility.
She argued that genotype education should begin much earlier through schools, adolescent health programmes and routine reproductive healthcare services.
She also identified major gaps during pregnancy and after delivery.
According to her, many pregnant women undergo genotype testing but receive little counselling about the implications for future pregnancies and their children.
More concerning, she said, is the absence of routine newborn screening across most health facilities.
“Too many babies leave health facilities without any form of newborn screening, meaning families only discover the child has sickle cell disease after repeated illnesses and hospital admissions,” she said.
Although babies with sickle cell disease often appear healthy at birth, Ms Jimoh explained that organ damage can begin long before obvious symptoms emerge.
As foetal haemoglobin gradually decreases during infancy, sickling becomes more pronounced, potentially affecting organs such as the spleen even before painful crises occur.
“Waiting until a child starts having repeated crises means we have already missed an important window to prevent complications and improve long-term outcomes,” she said.
Newborn screening
Globally, newborn screening is recognised as one of the most effective strategies for reducing childhood deaths associated with sickle cell disease.
Early diagnosis allows healthcare workers to monitor affected children closely, educate caregivers, prevent infections and detect complications before they become life-threatening.
Yet routine newborn screening remains largely unavailable across much of Nigeria.
According to Ms Jimoh, inadequate funding, poor infrastructure, shortages of trained personnel and weak referral systems have prevented the intervention from becoming standard practice nationwide.
What Nigeria must do
For both experts, reducing the burden of sickle cell disease will require coordinated action across the healthcare system.
Ms Jimoh identified three priority interventions which includes; strengthening genotype education and counselling before conception, implementing nationwide newborn screening programmes, and improving primary healthcare services to provide continuous follow-up care and caregiver education.
Ms Akinde on the other hand, advocated a broader approach that includes expanding newborn screening, improving access to affordable medications such as hydroxyurea, strengthening primary healthcare systems, training healthcare workers and ensuring universal access to emergency care.
READ ALSO: PT Health Watch: Hidden genotype risks beyond AA, AS drive Nigeria’s sickle cell burden- Expert
Both experts agreed that sickle cell disease must no longer be treated as a neglected condition.
Instead, they argue, it should be recognised as a major public health priority requiring sustained investment, stronger policies and improved healthcare access.
With better diagnosis, affordable treatment and consistent support, they say, people living with sickle cell disease can live longer, healthier and more productive lives.
The theme for this year’s World Sickle Cell Day, “Closing the Survival Gap: Equity in Sickle Cell Disease,” emphasises global and local action to improve support, care, and awareness for patients, while encouraging stronger advocacy for better health outcomes.
The federal government has launched the National Guidelines for Public Procurement of Food and Related Services.
The framework introduces nutrition standards for food purchased with public funds as part of efforts to reduce unhealthy diets and curb the growing burden of non-communicable diseases in Nigeria.
The guidelines, unveiled on Monday in Abuja at an event themed “Public Procurement of Food: Promoting a Culture of National Wellness Through the Food Value Chain,” are expected to influence food served in public institutions, including schools, hospitals, correctional centres and military establishments, by setting evidence-based standards on nutrition, food safety and quality.
Delivering his keynote address at the launch, the Minister of State for Health and Social Welfare, Iziaq Salako, said the initiative marks a shift from viewing public procurement as a routine administrative process to using it as a strategic tool to improve public health and national development.
“When the government demands healthier, safer and more nutritious food, it creates incentives for the entire food system to innovate, improve quality and align with higher public health standards,” he said.
Why it matters
Mr Salako said the government remains the country’s largest institutional purchaser of food, meaning procurement decisions have the potential to influence food production, consumer behaviour and nutrition standards across the food value chain.
According to him, the guidelines establish limits on sodium, sugar and unhealthy fats in foods procured by public institutions while encouraging balanced and nutritious diets.
He said the document complements existing national policies, including the National Guideline for Sodium Reduction, the Trans Fat Regulation and the 2023 National Policy on Food Safety and Quality.
Rising burden of unhealthy diets
Mr Salako noted that unhealthy diets contribute to about 7.2 million deaths globally every year, driven largely by excessive consumption of salt, sugar and unhealthy fats as well as inadequate intake of fruits, vegetables and whole grains.
He revealed that the average Nigerian adult consumes between 3.9 grammes and 4.9 grammes of sodium daily, almost double the World Health Organisation’s (WHO) recommended limit of 2 grammes.
Mr Salako added that increasing consumption of sugar-sweetened beverages has contributed to rising rates of obesity and diabetes, prompting the introduction of the sugar-sweetened beverage tax, while industrial trans fats have also been restricted under Nigeria’s Trans Fatty Acid Regulation.
“These measures are designed to control dietary patterns that fuel the growing burden of non-communicable diseases, placing enormous pressure on health systems, national economies and household incomes,” he said.
Child malnutrition remains a concern
Mr Salako also highlighted the country’s persistent nutrition challenges, noting that malnutrition remains a direct or underlying cause of nearly half of the deaths among children under five years.
He said the Nigeria Mini Demographic and Health Survey found that about four in every 10 Nigerian children under five are stunted, while nearly two million children suffer severe acute malnutrition annually.
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“These are not merely health statistics. They represent profound human capital challenges with significant implications for educational attainment, labour productivity, household prosperity, national competitiveness and sustainable economic growth.”
Implementation key
Mr Salako stressed that the success of the guidelines would depend on effective implementation rather than their launch.
He urged procurement and accounting officers across government institutions to ensure compliance, noting that procurement decisions influence health outcomes, productivity and public confidence in government.
He added that the Federal Ministry of Health and Social Welfare would continue to promote disease prevention through healthier public policies as part of efforts to achieve universal health coverage.
The federal government has said it is expanding funding, local drug production and research to improve cancer prevention, diagnosis and treatment while easing patients’ financial burden.
The Director-General of the National Institute for Cancer Research and Treatment (NICRAT), Usman Aliyu, said this on Saturday in Abuja at the Best of American Society of Clinical Oncology (ASCO) Africa 2026 conference.
The conference, organised in collaboration with the African Organisation for Research and Training in Cancer (AORTIC), has the theme: “From Global Discovery to Local Delivery: Driving Africa to the Cutting Edge of Cancer Care.”
Mr Aliyu said the government had introduced measures to make cancer care more affordable, although treatment remained beyond the reach of many Nigerians.
He said the Catastrophic Health Fund under the National Health Insurance Authority subsidised cancer prevention, diagnosis, chemotherapy and radiotherapy for eligible patients.
He added that NICRAT operated the National Cancer Health Fund to support indigent cancer patients unable to afford treatment.
“These are initiatives by the government to support Nigerians suffering from this dreadful disease,” he said.
Mr Aliyu said the Presidential Initiative for Unlocking the Healthcare Value Chain would promote local production of cancer medicines and improve access to affordable treatment.
He said experts at the conference would review landmark studies presented at the ASCO Annual Meeting and adapt proven innovations to African health systems.
“We are trying to domesticate expensive treatments by producing much-needed medicines locally and translating global research into action in our clinics,” he said.
Financial protection
Lolade Adewale, Special Adviser on Research and Innovation to the Minister of State for Health, said government was expanding financial protection for cancer patients through targeted insurance schemes.
Ms Adewale said the Cancer Health Fund and the Social Determinants of Health Fund would improve access to treatment for eligible patients.
“Within the next year, you will hear more about it,” she said, referring to efforts to strengthen cancer insurance coverage.
She said Nigeria had commenced three immunotherapy clinical studies for the first time, giving patients access to advanced medicines previously unavailable in the country.
According to her, medicines such as Nivolumab and Keytruda are now available through clinical trials at no cost to participating Nigerians, reducing the need to seek treatment abroad.
Also speaking, Immediate Past President of AORTIC, Miriam Mutebi, said Africa accounted for only about eight per cent of global cancer research.
She said the continent’s research output remained inadequate, especially for cervical and prostate cancers, in spite of their high disease burden.
READ ALSO: Private sector indispensable to strengthening cancer care in Nigeria – NICRAT DG
Ms Mutebi urged African governments to fulfil their commitment to dedicate one per cent of Gross Domestic Product to research and development.
She said stronger domestic investment would generate evidence to improve diagnosis, treatment completion, patient experience and health systems.
The Chief Medical Officer of ASCO, Julie Gralow, said many breakthrough cancer therapies had not been adequately tested among African populations.
Ms Gralow said the conference would help determine how global evidence could be adapted to African settings while addressing affordability and access.
She said the ASCO-AORTIC partnership focused on workforce development, clinical research and training the next generation of African cancer researchers.
According to her, the organisations will open the second round of the Sub-Saharan Africa Clinical Research Scholars Programme in October.
AORTIC Vice-President for North America, Abiola Ibraheem, said the initiative was designed to bridge the gap between cancer care available in high-income countries and Africa.
She urged African countries to work collectively to improve access to innovative cancer therapies through a continental approach.
Ms Ibraheem said participation had grown significantly since the inaugural conference in Ethiopia, attracting more countries, sponsors and stakeholders committed to advancing cancer care across Africa.
The News Agency of Nigeria (NAN) reports that the conference brought together oncologists, researchers, policymakers and development partners from across Africa and beyond.
Participants reviewed major scientific advances presented at the ASCO Annual Meeting and explored how they could be applied within African health systems.
(NAN)
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