……Stakeholders warn of fragile treatment supply, seeks sustainable haemophilia care system
By Fatima Saka
The Federal Government has intensified efforts to tackle haemophilia and other inherited bleeding disorders with the official flag-off of the “Road to Clot” initiative and the launch of Nigeria’s first-ever National Bleeding Disorders Registry.
The Coordinating Minister of Health and Social Welfare, Professor Muhammad Ali Pate, made this known at a ministerial press briefing in Abuja on Friday, in commemoration of the 2026 World Haemophilia Day, themed “Diagnosis: The First Step to Care.”
Represented by Dr. Kamil Shoretire, Director of Health Planning, Research and Statistics, the minister said the initiatives mark a critical turning point in Nigeria’s response to haemophilia, particularly in addressing widespread underdiagnosis.
He stressed that early diagnosis remains the gateway to effective treatment, noting that without proper identification, patients are denied life-saving care.
“Early diagnosis is the difference between life and preventable complications, between disability and productivity, and between despair and hope,” he said.
The minister acknowledged the challenges faced by persons living with haemophilia, assuring them of government support.
“We see you, we hear you, and we will take necessary action to support you,” he added.
Haemophilia, a lifelong bleeding disorder caused by clotting factor deficiencies, continues to pose significant health risks in Nigeria. According to government estimates, haemophilia A affects about one in 5,000 people, while haemophilia B affects one in 10,000. However, only about three percent of affected individuals have been diagnosed, highlighting a major public health gap.
The newly launched “Road to Clot” initiative is designed to identify undiagnosed individuals, link them to appropriate diagnostic and treatment centres, and ensure access to long-term care. Complementing this, the National Bleeding Disorders Registry will provide comprehensive data for improved patient tracking, treatment outcomes, and evidence-based policy planning.
The government also outlined ongoing and future interventions, including the integration of haemophilia care into maternal and child health services, expansion of awareness campaigns, and plans to institutionalise early detection through newborn screening.
In her welcome remarks, Dr. Charles Nzelu, representing the Permanent Secretary of the Federal Ministry of Health and Social Welfare, emphasised that haemophilia remains largely undiagnosed in Nigeria, with many sufferers experiencing chronic pain and life-threatening complications without knowing the cause.
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.
Also speaking, Professor Teresa Nwagha, a Consultant Haematologist and Vice President of the Haemophilia Foundation of Nigeria, described the event as a historic milestone.
“This is the first time the Federal Ministry of Health is formally recognising and commemorating World Haemophilia Day in Nigeria,” she said, noting that fewer than 1,000 Nigerians are currently identified as living with the condition, despite thousands likely affected.
She highlighted that delayed diagnosis often leads to preventable disabilities and stigma, with many cases misattributed to cultural or supernatural causes.
In a strong advocacy message, Meqan Buckie Adediran, Founder and Executive Director of the Haemophilia Foundation of Nigeria, called for urgent reforms in treatment access, warning that Nigeria’s reliance on donated treatment products is unsustainable.
Representing Cesar Garrido, President of the World Federation of Haemophilia, Adediran said patients in Nigeria currently depend almost entirely on donated clotting factors, a situation she described as precarious and 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 said.
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,” she stressed.
Adediran 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.
She 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 said.
The Federal Government reaffirmed its commitment to strengthening healthcare systems, improving access to clotting factor therapies, and enhancing emergency response services for patients, including through the national ambulance system.
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Health officials also urged the media to sustain public enlightenment campaigns to boost awareness and promote early detection across communities.
The event brought together key stakeholders, including representatives of the Haemophilia Foundation of Nigeria, the World Federation of Haemophilia, healthcare professionals, and patient groups, all united in advancing care and support for people living with bleeding disorders in the country.
Meanwhile, Distinct News Nigeria, reports thatHaemophilia is a rare, often inherited genetic disorder that affects the body’s ability to form blood clots, leaving individuals vulnerable to prolonged bleeding and, in severe cases, dangerous internal haemorrhage.
The condition occurs when the body lacks sufficient levels of essential clotting proteins, known as clotting factors—that help stop bleeding after injury. In people living with haemophilia, this process is disrupted, meaning even minor injuries can lead to excessive or extended bleeding.
There are two main types of the disorder: Haemophilia A, caused by a deficiency of clotting Factor VIII, and Haemophilia B, which results from low levels of Factor IX. Both forms share similar symptoms, but vary based on the specific clotting factor affected.
Beyond its medical definition, haemophilia represents a lifelong challenge for those affected, requiring careful management, early diagnosis, and access to appropriate treatment to prevent complications and improve quality of life.
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