FG moves to strengthen haemophilia care, targets NHIA coverage

The Federal Government said it has intensified efforts to tackle haemophilia and other bleeding disorders in Nigeria, with plans to finalise a national guideline, expand awareness and push for inclusion of treatment under the National Health Insurance Authority (NHIA). Haemophilia is a rare inherited bleeding disorder in which the blood does not clot properly due […]

The Federal Government said it has intensified efforts to tackle haemophilia and other bleeding disorders in Nigeria, with plans to finalise a national guideline, expand awareness and push for inclusion of treatment under the National Health Insurance Authority (NHIA).

Haemophilia is a rare inherited bleeding disorder in which the blood does not clot properly due to a deficiency or absence of certain clotting factors, most commonly Factor VIII (Haemophilia A) or Factor IX (Haemophilia B). Because of this deficiency, people with haemophilia can experience prolonged bleeding after injuries, surgery, or even minor cuts, and in severe cases may have spontaneous bleeding into joints, muscles, or internal organs.

The condition primarily affects males, while females are usually carriers, and it is typically diagnosed in childhood.

A Director and National Coordinator of Non-Communicable Diseases (NCDs) at the Federal Ministry of Health, Dr Alayo Sopekan, spoke on government’s efforts on the disease during an interaction with journalists on Wednesday, saying haemophilia has now been formally captured under the country’s National Non-Communicable Diseases Policy and Strategic Plan.

He spoke in Abuja during a 2-day forum organised by the Nigerian Society for Haematology and Blood Transfusion (Haemophilia Care Team) in collaboration with the National Blood Transfusion Agency and Novo Nordisk Haemophilia and Haemoglobinopathies Foundation with the theme: “Inherited Blood Disorders Leadership Forum Abuja 2026.”

According to him, bringing haemophilia under a formal policy framework was the first critical step toward structured government intervention.

“Once you don’t have a policy in the ministry, there is little you can do. But once haemophilia is included in our control policy, it means government is committed to addressing it,” he said.

He explained that after identifying the growing number of Nigerians living with haemophilia, the ministry convened stakeholders across the country to develop a roadmap for managing the condition.

One major outcome of that process, he said, is the development of a multi-level national guideline for haemophilia care, designed for use at primary, secondary and tertiary healthcare levels.

“We don’t want to leave everything to haematologists because they are very few. If we do that, we will continue to see children bleeding into their joints or even into the brain,” he said.

The guideline, which is expected to be finalised this year, will enable healthcare workers at primary health centres (PHCs) and general hospitals to identify suspected cases early and refer them appropriately.

Dr Sopekan acknowledged that access to clotting factor concentrates — the critical consumable used in managing haemophilia — remains a major challenge.

Currently, Nigeria depends largely on imported products and donations from international partners.

“We rely more on donations from outside the country, which is not even good for us. These people donating to us may stop one day,” he warned.

He noted that just as government has procured sickle cell screening kits and hydroxyurea for sickle cell management in the past, similar procurement could be done for haemophilia since it has now been included in national policy.

The ministry is also exploring inclusion of haemophilia treatment under health insurance schemes.

“For non-communicable diseases, health insurance is the way to go — whether at national, state or community level. We must make sure everybody is covered,” he said.

He added that insurance coverage would reduce the cost burden on families and ensure patients can access clotting factors without being told the drugs are unavailable or unaffordable.

On awareness, Dr Sopekan admitted that many Nigerians — including some health workers — are unaware of haemophilia and other bleeding disorders.

“A lot of Nigerians don’t even know about haemophilia. Even some health workers, when they see excessive bleeding, they may not suspect haemophilia,” he said.

To address this gap, the ministry, he said, was working with the Haemophilia Foundation of Nigeria and other partners to scale up sensitisation campaigns, including community-level awareness and activities marking World Haemophilia Day each April.

He stressed that awareness must go beyond annual events and be integrated into routine primary healthcare outreach, leveraging community health extension workers and local health committees.

Dr Sopekan encouraged people living with haemophilia to speak openly about the condition to help reduce stigma and improve public understanding.

“We are saying they need to come out. You don’t need to hide under any disease. When people living with HIV can come out, how much more this one?” he said.

On prevalence data, he revealed that Nigeria currently lacks accurate national figures for haemophilia cases, relying instead on clinic-based estimates. He noted that a comprehensive survey would be required to determine the true burden of the disease, but such surveys are expensive.

“We are not identifying cases enough. That is the truth. That is why we need to take the search for cases back to the community,” he said.

He advised parents to seek medical care for children who experience prolonged bleeding, frequent unexplained bruising, or bleeding that does not stop easily, stressing that early detection at primary healthcare level is key to preventing severe complications.

With policy backing now secured, the ministry says its next focus is finalising guidelines, strengthening capacity at lower levels of care, improving awareness, and ensuring sustainable access to life-saving treatment for Nigerians living with haemophilia

Earlier in her welcome address, Prof Omolade Augustina Awodu, Team Lead for Strengthening Haemophilia Care in Nigeria, raised concerns that Nigeria bears one of the world’s heaviest burdens of inherited blood disorders most notably heamophilia and sickle cell disease, conditions she said, had continued to “exact profound tolls on lives, families,and the national system.”

She said despite years of donor-supported interventions and dedication of clinicians and patient advocates, access and timely diagnosis, essential treatment and comprehensive care remain uneven and fragile.

Prof Awodu said the Nigeria Inherited Blood Disorders Leadership Forum 2026 was convened as a high-level, solution-driven platform which brings together, government leaders, heath policymakers, clinicians, researchers, patient advocates, development partners, faith and community based actors to confront inherited blood disorders as a shared national responsibility rather than a marginal medical concern.

In her lecture titled Sickle Cell Disease in Nigeria: Epidemiology, Burden and Emerging Data, Prof Obiageli Nnodu, Director, Centre for Sickle Cell Disease Research and Training at the University of Abuja, said study showed that 1.3% of children in the country are with sickle cell disease while the disease contributes about 4.2% to infant mortalities.

She identified early interventions, health education and genetic counseling as part of solutions in addressing the burdens of sickle cell disease in the country.

In her lecture titled: Heamophilia Care in Nigeria: Past, Present and the Future Directions, Prof Titi Adeyemo, a Professor and Consultant Haematologist and Director at the Lagos University Teaching Hospital Heamophilia Treatment Centre, said the estimated burden of haemophilia is between 12,000 to 15,000.

She identified challenges facing haemophilia care in Nigeria to include diagnostic gaps, zero funding, brain drain, budget shortfalls and lack of health insurance coverage for the disease, among others.

Prof Adeyemo stressed the need for the government to adopt and ensure funding of haemophilia treatment as well as include under the national health insurance coverage to reduce the burdens of care.

Dr Stella Rwezaula, Haematologist and Chairperson, Haemophilia Society of Tanzania, in her presentation identified limited diagnostic capacity, reliance on donor agencies, limited access to treatment, inadequate infrastructure, stigma and myths surrounding blood disorders as some of the challenges.

While sharing the success stories of heamophilia care in Tanzania, Dr Rwezaula said with coordinated actions across sectors, Nigeria can equitable haemophilia care that ensures dignity, productivity and quality of life for all affected individuals.

Chairman of the event, Prof Wuraola Shokunbi, Professor of Haematology and Blood Transfusion, University of Ibadan, in her remarks, emphasised the need for government to take ownership of haemophilia care and treatment rather than relying on donors.

“It isn’t nice to hear that patients die because foreign donations of concentrates are not coming”, she said.