Nigeria Launches First National Bleeding Disorders Registry to Combat Haemophilia
The Federal Government has officially launched Nigeria's first-ever National Bleeding Disorders Registry, a landmark initiative designed to tackle haemophilia and other inherited bleeding conditions across the nation. This significant public health effort was unveiled in conjunction with the "Road to Clot" programme, which aims to identify undiagnosed individuals, connect them to appropriate diagnostic and treatment centres, and ensure access to long-term, sustainable care.
Addressing a Critical Health Gap
Haemophilia, a lifelong bleeding disorder caused by deficiencies in clotting factors, continues to pose severe health risks in Nigeria. Government estimates indicate that haemophilia A affects approximately one in every 5,000 people, while haemophilia B impacts one in 10,000. Alarmingly, only about three per cent of affected individuals have been formally diagnosed, revealing a substantial public health gap that leaves thousands without proper medical attention.
The condition occurs when the body lacks sufficient levels of essential clotting proteins, known as clotting factors, which are crucial for stopping bleeding after injury. In individuals living with haemophilia, this natural process is impaired, meaning even minor injuries can result in prolonged or excessive bleeding, leading to chronic pain, disability, or life-threatening complications.
Government Commitment and Strategic Interventions
Minister of Health and Social Welfare, Professor Muhammad Ali Pate, disclosed these developments during the commemoration of the 2026 World Haemophilia Day in Abuja. He emphasised that early diagnosis is critical to effective treatment, noting that without proper identification, patients are often denied life-saving care.
"Early diagnosis is the difference between life and preventable complications, between disability and productivity, and between despair and hope," Professor Pate stated. Represented by the Director of Health Planning, Research and Statistics, Dr Kamil Shoretire, the minister acknowledged the challenges faced by people living with haemophilia and assured them of robust government support.
He described the registry as a critical turning point in Nigeria's response to haemophilia, particularly in addressing widespread underdiagnosis. The registry is expected to provide comprehensive data for improved patient tracking, enhanced treatment outcomes, and evidence-based policy planning.
The government also outlined ongoing and planned interventions, which include:
- Integrating haemophilia care into maternal and child health services.
- Expanding public awareness campaigns nationwide.
- Institutionalising early detection through newborn screening programmes.
Stakeholder Collaboration and Urgent Reforms
Permanent Secretary in the ministry, Daju Kachollom, lamented that haemophilia remains largely undiagnosed in Nigeria, with many sufferers experiencing chronic pain and life-threatening complications without knowing the cause. Represented by the Director of Public Health, Dr Charles Nzelu, she called for stronger collaboration among stakeholders, including healthcare providers, civil society organisations, and development partners, to improve awareness, diagnosis, and management of the condition.
Consultant Haematologist and Vice President of the Haemophilia Foundation of Nigeria, Professor Teresa Nwagha, noted that fewer than 1,000 Nigerians are currently identified as living with the condition, despite thousands likely being affected. She described the event as a historic milestone, stating, "This is the first time the Federal Ministry of Health is formally recognising and commemorating World Haemophilia Day in Nigeria."
Professor Nwagha emphasised that delayed diagnosis often leads to preventable disabilities and stigma, with many cases wrongly attributed to cultural or supernatural causes.
Challenges in Treatment Access and Sustainability
Founder and Executive Director of the Haemophilia Foundation of Nigeria, Megan Adediran, who represented the President of the World Federation of Haemophilia, Cesar Garrido, called for urgent reforms in treatment access. She warned that Nigeria's reliance on donated treatment products is unsustainable and precarious.
Adediran revealed that patients in Nigeria currently depend almost entirely on donated clotting factors, a situation she described as unacceptable. "Nigeria depends 100 per cent on donated products. If there is no donation and a child is bleeding, we have nothing to offer," she stated.
She cited recent disruptions in global supply chains, including airspace closures linked to geopolitical tensions, which delayed shipments of treatment products and forced some patients off preventive therapy. "This is not sustainable. These are Nigerians and they deserve healthcare. Donations cannot last forever," Adediran stressed.
She described the commemoration as not just symbolic, but a call to action to identify undiagnosed patients, expand access to treatment, and amplify the voices of women and girls living with bleeding disorders. Adediran also recounted the generational toll of the disease, revealing that members of her own family had died from undiagnosed bleeding disorders, underscoring the urgent need for systemic intervention.
"My grandmother lost nine sons; my great-grandmother lost four sons. I do not want to see another generation go through that," she concluded, highlighting the profound personal and societal impact of these disorders.
