Sickle Cell Foundation Calls for Collaboration to Stem SCD
Bennett Oghifo
The Sickle Cell Foundation Nigeria (SCFN), the world’s foremost non-profit organisation dedicated to comprehensive sickle cell disorder (SCD) intervention, has said it needs the support of the government, private sector and international partners to stop the needless deaths from SCD.
The National Director, Sickle Cell Foundation Nigeria, Dr. Annette Akinsete, made this clarion call at a press conference marking the 2025 World Sickle Cell Day, at the National Sickle Cell Centre in Lagos, recently.
The Theme for World Sickle Cell Day 2025 is: ‘Access to New Therapies – Hope or Hype?’
According to Akinsete, “Nigeria bears 25 per cent of the global sickle cell burden, with 150,000 affected births annually and 100,000 children dying before age five. Our integrated approach has proven effective, but achieving our goal of reducing SCD births and under-5 mortality by 80 per cent by 2030 requires unprecedented collaboration with government, private sector, and international partners.”
Akinsete said her call for support “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 organisations 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.”
She said, “Our theme this year asks a piercing question: ‘Access to New Therapies – Hope or Hype?’ 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? Will these scientific breakthroughs reach the banks of the Niger and Benue? the deserts of Borno? the creeks of Bayelsa? or will they remain headlines in foreign journals, inaccessible to the those who need them most?
“We at the Sickle Cell Foundation Nigeria refuse to accept hype without hope and hope without access.
“Last year, history was made: Two Nigerians walked into our newly commissioned transplant centre. They walked in with pain; They walked in with crises; They walked in with HbSS. But today they are Cured. One now HbAA the other HbAS).
“They are free. They are whole. They are living proof that cure is not a Western myth. They are proof that sickle cell cure is a Nigerian reality.
“As we speak, new patients have been admitted into our state-of-the-art Bone Marrow Transplant (BMT) Centre located inside LUTH, from where they will emerge, 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.”
