By Sola Ogundipe

In a passionate call to action, the Sickle Cell Foundation of Nigeria (SCFN) has described the battle against sickle cell disorder (SCD) as a national emergency, even as it calls on the government at all levels, the private sector, and the communities to collectively rise to the challenge.

Making the call during the World Sickle Cell Day 2025 media briefing themed: “Access to New Therapies: Hope or Hype? – Exploring Bone Marrow Transplants, Gene Therapies and Accessibility in Low-Resource Settings”, the National Director of the SCFN, Dr. Annette Akinsete, decried the persistence of SCD in Nigeria, saying that under a national emergency, no child should die due to lack of access to care and treatment in the country.

Akinsete lamented that over 150,000 Nigerian babies are born with SCD every year, out of whom 100,000 die before their fifth birthday, not because there is no cure, not because there is no hope, but because the world is not paying attention.

“My address today/speaks to the pressing urgency of the situation we currently face in the sickle cell space. It is also hopeful, grounded in the belief that groups and organizations can unite and collaborate to bring sickle cell under control.

“There are moments in history when the world must pause, reflect, and act-not tomorrow, not eventually, but now. Today is one of those moments. We are gathered here today, not to whisper, but to scream, not to moan, but to mobilize, not to dissect the suffering, but to dismantle the suffering.” 

Akinsete explained that the theme this year is “Access to New Therapies-Hope or Hype? – asks a piercing question.

“Is there really hope for all? Is there access to all? Are we not leaving people behind? Are gene therapies and bone marrow transplants accessible to everyone who needs them, or simply to a privileged few?

“The time for discussion is over, and the time for mobilization is now”, Akinsete noted, even as she highlighted the global health inequities, stating emphatically that SCFN is poised, not to be onlookers, but to reverse the tragedy of sickle cell disease.

“This is not a mere campaign, it is warfare, a war against ignorance, a war against poverty, a war against silence, a war against untimely death. We refuse to accept hype without hope, and hope without access.”

Celebrating a historic medical triumph against SCD, the CEO recounted how two Nigerians were cured at the SCFN’s state-of-the-art Bone Marrow Transplant (BMT) Centre the Lagos University Teaching Hospital (LUTH), saying they are proof that a cure is not a Western myth, but a Nigerian reality, even as new patients have been to be cured of sickle cell disease.

“But my heart is heavy, because too few patients are walking through the doors of our BMT Centre; worse still, too few patients have access to the simple, comprehensive treatment for sickle cell; and this will not do.

“We must not rest until every child with SCD in Nigeria has access to early diagnosis, access to prompt, effective and comprehensive treatment, access to cure and lives with that confidence, that they will live in a society, where they will be treated with dignity and respect, and never be at the receiving end of stigma and discrimination,” Akinsete remarked.

“She added that the theme is topical, and also aligns with the theme of the 5th Global Congress on Sickle Cell Disease scheduled to take place in Abuja from the 3rd to 6th of June, 2025 –   ‘ Working together to reduce the burden of sickle cell disease: Leaving no one behind’.

Following the success of the BMT, new patients have been admitted for another round of transplants, further strengthening SCFN’s position at the forefront of global sickle cell treatment.

The Foundation is also actively exploring gene therapy, recognizing access to these innovations as a moral imperative.

With the call to action on the future of SCD treatment in Nigeria, SCFN is not only leading the conversation but pushing boundaries to turn medical innovations into reality for Nigeria’s SCD community.

With landmark medical successes and relentless advocacy, the Foundation is ensuring that scientific breakthroughs translate into life-changing outcomes.

Through its campaign, SCFN reaffirms its commitment to breaking barriers, saving lives, and driving global impact in the fight against sickle cell disorder. 

In the first quarter of 2025, among others, the SCFN  has delivered healthcare outreach to over 3,000+ individuals in riverine communities in Epe, Lagos State, and trained 17 primary healthcare workers and conducted genotype testing. 

At Bowen University, it reached over 5,000 students with critical SCD awareness and established the Bowen SCFN Sickle Cell Advocacy Network**, sparking high interest among medical and science students. 

“This theme is topical, and also aligns with the theme of the 5th Global Congress on Sickle Cell Disease scheduled to take place in Abuja from the 3rd to 6th of June, 2025, which is: ‘Working together to reduce the burden of sickle cell disease: Leaving no one behind’

That is why we have launched the Integrated Health Initiative-from Kano to Epe; from Lagos to Kaduna; where we are reaching under-served populations, screening newborn babies for sickle cell, equipping clinics, and empowering the forgotten.

That is why we trained healthcare workers. That is why we walked into creeks, campuses, and corps camps. That is why we carried out thousands of free tests, provided free medicines, and life-saving health education.