Sickle Cell Foundation urges Nigeria to lead global care partnership

The Sickle Cell Foundation Nigeria (SCFN) has called on Nigeria to take a leading role in a new global partnership aimed at improving the prevention, diagnosis and treatment of sickle cell disease worldwide.

The call was made during the 81st United Nations General Assembly in New York, where SCFN joined the Nigerian delegation and other global health stakeholders to launch OneSCD, a global partnership focused on advancing equity and transforming sickle cell care.

SCFN National Director and Chief Executive Officer, Dr Annette Akinsete, said Nigeria should be considered as an early demonstration country for the implementation of the OneSCD partnership.

She said Nigeria’s long-standing experience in sickle cell advocacy, healthcare delivery and the development of local solutions made it well positioned to contribute to the initiative.

The event was hosted by the Nigerian government and led by the Minister of State for Health and Social Welfare, Dr Iziaq Adekunle Salako. Representatives of governments, international organisations, global health institutions, civil society organisations and people living with sickle cell disease also attended.

Akinsete said Nigeria’s contribution to the partnership should not be based only on the country’s large sickle cell burden.

According to her, Nigeria also brings experience, institutions, technical expertise, civil society participation, lived experience and solutions developed within its own healthcare environment.

She said Nigeria has both an opportunity and a responsibility to demonstrate how country-led implementation of the OneSCD initiative could work.

Akinsete also called for a change in the way global sickle cell interventions are developed, particularly in sub-Saharan Africa.

She said countries affected by the disease should not be regarded only as beneficiaries of solutions developed elsewhere but should be involved as partners in designing, adapting, testing and implementing interventions that address their specific needs.

The OneSCD partnership, launched with support from St. Jude Children’s Research Hospital, is designed to improve global coordination, mobilise resources and promote shared learning on sickle cell disease.

Akinsete said the platform could help connect Nigeria’s existing sickle cell programmes and expertise with international efforts to strengthen prevention, early diagnosis and comprehensive treatment.

SCFN’s programmes in Nigeria include genetic counselling, early detection, prenatal diagnosis, Transcranial Doppler screening, treatment access, healthcare-worker training, community awareness, research and advocacy.

The foundation said it has supported more than 32,000 Transcranial Doppler screenings, 259,000 haemoglobin investigations, 70,000 medication interventions, 3,500 prenatal diagnosis interventions and more than 10,000 genetic counselling engagements.

Akinsete said Nigeria’s experience could demonstrate how prevention, early diagnosis, comprehensive care, research, advocacy and community engagement could be combined to strengthen the national response to sickle cell disease.

SCFN said it would continue working with the Nigerian government, global health institutions, development partners, healthcare professionals, private-sector organisations, civil society groups and people living with sickle cell disease to develop sustainable solutions.

The foundation said the ultimate goal of the OneSCD partnership should be to reduce disparities in access to quality sickle cell care and improve health outcomes.

The World Health Organisation estimates that 7.74 million people were living with sickle cell disease globally in 2021, with about 515,000 new births recorded that year. Sub-Saharan Africa accounts for nearly 80 per cent of the global burden, according to the WHO.

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