Abuja 2026: Turning policy recommendations into action for haemophilia and sickle cell care

On 11–12 February 2026, stakeholders in Abuja convened for the Inherited Blood Disorders Leadership Forum to strengthen care for people living with haemophilia and sickle cell disease through collaborative partnerships and sustainable investment.   Organised by the Nigerian Society of Haematology and Blood Transfusion (NSHBT Haemophilia Care Team), with the National Blood Service Agency (NBSA) and supported by the Novo Nordisk Haemophilia & Haemoglobinopathies Foundation (NNHF) and Novo Nordisk Foundation (NNF), the forum brought together policymakers, clinicians, researchers, patient advocates, development partners, and community leaders.

A clear message: systems, not fragmentation

Participants agreed that inherited blood disorders are treatable, manageable, and cost-effective, but only when supported by coordinated systems of care. The forum identified a critical gap in Nigeria: fragmented implementation across actors and sectors, alongside weak domestic financing and limited policy integration. As Professor Omolade Awodu emphasised, the challenge is not a lack of expertise, but “limited policy integration, weak domestic financing, and insufficient coordination across sectors.”

Evidence of unmet need – and what it means for implementation

The discussions highlighted persistent barriers to diagnosis, continuity, and comprehensive care:

• Haemophilia: Nigeria has 17 treatment centres, all within tertiary hospitals, restricting access for rural and underserved communities. Only 941 of an estimated 12,000–15,000 people living with haemophilia are identified and registered (around 6% diagnosis rate).
• Sickle cell disease: Care remains disproportionately reactive rather than preventive, with only 13% of registered patients receiving hydroxyurea.
• Mental health: A mental health study shared during the forum reported 84% of patients experiencing significant mental health challenges, yet mental health services are absent from standard care pathways.
• Diagnosis without retention fails: Newborn screening progress is constrained by follow-up and enrolment in ongoing care.

In the keynote, Professor Alani Akanmu framed the urgency plainly: “No one today should die” he stated, arguing that the knowledge and tools to manage both conditions effectively already exist in Nigeria. The barrier is access, cost, and political will.

A panel discussion at the Forum, chaired by NNHF project partner Prof Awodu, and joined by Dr Stella Rwezaula, one of the Tanzanian project partners involved in the NNHF East Africa project.

Recommendations that require enforceable action

The forum’s policy recommendations focused on practical, governable steps: operationalise government ownership, finalise and disseminate clinical guidelines, strengthen medicines governance through National Essential Medicines List inclusion, expand and reform insurance coverage, decentralise service delivery, build government-owned national registries, integrate mental health and genetic counselling, and establish a Nigerian Inherited Blood Disorders Consortium with government co-chairing and technical working groups delivering outputs within six months.

Call to action for partners and policymakers

We invite project partners in Nigeria and internationally, policymakers, and co-funders to review the publicly available report and support its implementation, starting with ring-fenced domestic financing, insurance benefit expansion, decentralised care models, and activation of the consortium and registry.