Sickle Cell Day: Coalition Advocates Quality Care, Funding for Curative Research

Coalition of Sickle Cell NGOs on Saturday advocates for better care and more funding on curative research, for Sickle Cell anemia in Nigeria to reduce scourge of the disease.

The stakeholders made the call during the Red Umbrella Walk tagged “From Awareness to Action: Building a Nation of Care organised by the Coalition to commemorate the 2026 World Sickle Cell Day.

Speaking, the coalition’s Chairperson, Ms. Timi Edwin, said the annual walk was designed to amplify advocacy and improve care for people living with the disorder.

Edwin, who is also the Chief Executive Officer of CrimsonBow Sickle Cell Initiative, said the theme, “From Awareness to Action: Building a Nation of Care,” reflected urgent needs for government across levels to show empathy towards the patients.

“We are here today because of the Red Umbrella Walk. It’s an annual advocacy walk that is set to mark the World Sickle Cell Day.

“We need a nation of care. We need all of us to come together. We need patient voices.

“We need the government, private individuals and corporate bodies to come together to ensure that people living with sickle cell are no longer stigmatised.”

According to her, people living with sickle cell disorder have remained underserved despite their contributions to society.

“We have been a bunch of people who have been left behind for too long. We are saying no more.

“We are bringing ourselves to the front and showing on the frontline of advocacy.

“We are saying, look, you have to recognise us because it is high time to recognise us.

“We are powerful members of society despite what is running through our veins,” she said.

Edwin, who is also a carrier of the Sickle Cell anemia for almost 40 years, urged the Federal Government to devote more resources to healthcare and research.

Applauding President Bola Tinubu for the health budget, Edwin who called for increased funding for scientific research on herbal medicine said there was the need for sustained research to find cure for the disease.

“A portion of that budget should be dedicated into research. Where there is a challenge, the solution is within us. We need research into our herbs so that we can get a cure, not management,” she said.

She noted that increasing life expectancy among sickle cell warriors had created new healthcare challenges.

“We are no longer dying young. We now have warriors in their 40s, 50s, 60s, 70s and beyond.

“Our bodies are slower to healing and we need to know why. That is why research is very important.”

Edwin added that the burden of sickle cell disorder extended beyond physical pain to psychological, financial and emotiona, calling for holistic care for patients.

Also speaking, the coalition’s Vice-Chairperson and Founder of Noan’s Ark Foundation for Sickle Cell Nigeria, Ms Osasele Esangbodo, said the awareness walk aimed to educate the public and inspire hope among people living with sickle cell disorder.

Esangbodo, who noted that sickle cell disorder was not a death sentence, saying: “This walk is to tell people that if you are living with this condition, it is manageable. Most parents think it is a death sentence. It is not.”

She said the walk was dedicated to the memory of Ms Toyin Adesola, the immediate past Chairperson of the coalition, who recently died at age 60.

Esangbodo, who identified access to healthcare and effective pain management as major challenges facing patients, said: “Many hospitals still do not know how to manage our pain properly.”

Speaking, Mrs Doris Gbemiloye, Executive Director of Genotype Foundation, urged Nigerians to know their genotype before marriage.

Gbemiloye, who noted that knowledge and early diagnosis remained critical to reducing the burden of sickle cell disorder, advocated prenatal diagnosis for couples who are carriers.

Adding, the coalition’s Public Relations Officer, Mr Peter Osikoya, who advocated compulsory new born genotype testing, called for wider adoption of advanced genotype testing.

He advocated the use of High-Performance Liquid Chromatography (HPLC) to reduce cases of genotype misdiagnosis.

“The problem of misdiagnosis is what I want to emphasise. People believe they know their genotype and later discover otherwise.

“This creates serious social and emotional consequences.We need policies that will penalise laboratories that issue wrong results.”

Osikoya also called for regular training of laboratory personnel and improved regulation of testing facilities.

Mrs Khadijat Abdulkareem of the Lagos State Ministry of Health said the state government was expanding access to genotype screening.

She said free newborn screening was currently available in more than 70 public health facilities across Lagos State.

“We are advising parents to take advantage of the free newborn screening programme. It is available in many facilities across Lagos State,” the official said.

Urging residents to patronise only accredited laboratories, Abdulkareem said that the government was making frantic moves to clamp down on unregistered laboratories and quackery.

Also speaking, Mr Viavonu Folorunsho and Mr Kelani Akeem, Directors at the Lagos State Office for Disability Affairs (LASODA), commended the coalition’s advocacy efforts.

The directors who noted that government was ready to partner with the coalition, said LASODA remains open to collaboration aimed at improving healthcare and welfare support for affected persons.
Stakeholders unanimously agreed that increased awareness, improved healthcare access, research funding and stronger partnerships were essential to improving outcomes for people living with sickle cell disorder in Nigeria.

Other NGOs in the awareness campaign include: Sickle Cell Advocacy & Management Initiative (SAMI), Gail Sickle Initiative, Soulage A Biyi Odegbaike Foundation for Sickle Cell, and Haima Health, Modupeire Sickle Cell Advocacy Initiative.

Others are Couples & Kids Social Initiative, Tiwa Sickle Cell Disease Foundation, Tony May Foundation among others took turns to harp on the importance of the knowing the Genotypes early in life. The Coalition comprises of 40 active NGOs across Nigeria as five other walks were conducted in Abuja, Warri, Abeokuta, Ilorin and Sagamu concurrently.

Some of the placards wielded by scores of Sickle Cell NGOs with bold inscriptions read; Stop the stigmatisation today!”, “Join the fight against Sickle Cell disorder” and “Care and Support People with Sickle: Cell Disorder”.

Others include: “Sickle Cell is not a death Sentence”, “There is danger in not knowing your Genotype”, “Nigeria needs a New-Born Screening Policy”.