Sickle Cell: Experts blame delay, poverty for warriors’ deaths

By Chidinma Ewunonu-Aluko, Ibadan 

As the world marks Sickle Cell Disease (SCD) Day on Friday, experts have warned that poor management of complications from the disorder killed more sickle cell warriors in later years.

They noted that poverty, ignorance and delay were the real killers and not SCD itself.

According to the World Health Organisation (WHO), Sickle-Cell Disease (SCD) is a group of genetic (inherited) blood disorders, caused by a mutation in the HBB gene, affecting hemoglobin, the protein responsible for carrying oxygen in red blood cells.

This defect causes the  body to produce abnormal hemoglobin (the protein that carries oxygen in red blood cells) and because of this genetic anomaly, the red blood cells become rigid, sticky, and “sickle” (crescent-shaped).

These misshapen cells block blood flow, resulting in a clinical disease known as Sickle Cell Disease (SCD).

World SCD day is commemorated annually  on June 19, with the 2026 theme as “Closing the Survival Gap: Equity in Sickle Cell Disease”.

The United Nations-recognised day is dedicated to raising global awareness about sickle cell disorders and advocating for better care, equity, and support for patients and their families.

Prof. Taiwo Kotila, Consultant Haematologist at University College Hospital (UCH), Ibadan, said the poor management of complications of sickle cell disease was a common cause of death in later years.

Kotila said SCD prevalence remained stable at 2 to 3 per cent, noting that the burden in Oyo state and the country would continue to rise as the population increased.

On treatment, Kotila explained that options existed in Nigeria.

“There are many drug trials on SCD but established treatments include Hydroxyurea, bone marrow transplantation and gene therapy.

“All of which are available in the country except for gene therapy; so access to proven therapies must improve”.

The UCH haematologist debunked a major public myth about lifespan, saying that sickle cell warriors also lived long.

“The first myth is that patients don’t live long.

“With good care and regular clinic attendance, we now have patients in their 40s and 50s and the occasional patients in their 60s and beyond,” she said.

Kotila pushed for drug affordability as the next step, stressing that drugs like hydroxyurea should be subsidised and available on the National Health Insurance Authority (NHIA) scheme.

Her key message for World SCD Day was centered on national priority.

“As a nation with the highest burden of sickle cell disease, care and research into sickle cell disease should be a priority,” she said.

She called for urgent policy action on screening.

“Government should by now incorporate newborn screening for Sickle cell disease into our antenatal care policy at all health care levels,” she said.

On patient responsibility, Kotila warned against complacency with age.

“Patients also have a critical role to play in closing the survival gap.

“They should not assume that once they have reached age forty and above, that they have mastered the disease.

“Patients should still be faithful with clinic attendance. This will help forestall some late complications,” she emphasised.

Dr Toyin Aniagwu of the University College Hospital (UCH), Ibadan, urged prevention and proper pain management of the affected.

Aniagwu, a Nurse and Health Promotion Specialist who provides genetic counseling on SCD and other NCDs in UCH, described SCD as an inherited blood disorder, not contagious.

Sickled cells are C-shaped, stiff and die in less than 20 days, she explained.

According to her, the sickled cells block vessels, cause anaemia and severe pain crises.

“Daily care is mostly about preventing pain crises and complications, hydration is non-negotiable, eight to ten glasses daily and more in heat are necessary.

“Dehydration thickens blood and triggers sickling therefore, hydration is key.

“Infections must be prevented through relevant vaccinations such as flu, hepatitis B, meningitis and pneumonia, malaria prophylaxis among others,” she said.

She also emphasised that adherence to hydroxyurea and Folic acid helped to reduce frequency of crisis, while temperature regulation also mattered, as cold triggered vessel constriction.

She stressed that regular clinic visits every three to six months were essential, even when well, adding that eyes, kidneys, heart and stroke risk must be checked.

Aniagwu listed five triggers: dehydration, extreme temperatures, infection, low oxygen at high altitude, and stress or overexertion.

She cautioned that red flags like chest pain, breathing trouble, fever above 38.5°C and priapism over four hours required immediate hospital care.

On home care, Aniagwu faulted delayed treatment.

“Pain is easier to control early; families should act at first signs,” she said.

She further cautioned against putting ice on painful spots.

“Cold causes blood vessels to constrict, trapping more sickled cells,” she explained.

Other mistakes according to her, include poor hydration, wrong drug usage, ignoring red flags and overexerting patients during crises.

For young adults, she said SCD was not a hinderance to school, work or marriage, stressing that careful planning was needed.

“Genotype testing in reputable laboratories before marriage is critical, HbSS + AS gives over 50 per cent chance of SCD baby at each pregnancy.

“Pregnancy is risky but very possible. Pre-pregnancy planning with a haematologist and Gynae-Oncologist with close monitoring is critical; don’t get pregnant by surprise,” she advised.

Aniagwu, however, urged government to subsidise hydroxyurea(a medication primarily used to reduce painful complications from sickle cell anaemia) and build SCD clinics in every state.

Considering the fact that SCD pain was an emergency, she called for mandatory newborn screening and free premarital genotype tests.

“Knowledge prevents new cases without coercion, Society must end stigma, let’s learn to say ‘person with SCD,’ not ‘sickler.’ They’re not their disease.

“Patients need dignity and systems that work.

“The condition is not the biggest killer; poverty, ignorance, and delay are,” Aniagwu stressed.

The 2026 world SCD day theme aims to raise awareness about healthcare disparities and improve health outcomes for patients worldwide.

The message from the experts is clear-  sickle cell disease may be inherited, but with good care and regular clinic attendance, patients can live into their 40s, 50s and beyond.

What stands between diagnosis and a full life is access — to information, to affordable drugs like hydroxyurea, to newborn screening, and to clinics that don’t make patients wait until crisis hits.

Reports have shown that prevention costs less than emergency care. Hydration, vaccines, regular checkups and avoiding triggers are simple, but they save years.

With Nigeria carrying the world’s highest SCD burden, the fight can no longer be left to patients and doctors alone.

The experts maintained that policy, funding and public awareness must catch up.

Until then, knowledge remained the cheapest intervention.

This is because when delay ends and dignity begins, SCD warriors stop surviving and start living. (NANFeatures)