The Haemophilia Foundation of Nigeria (HFN) has called on the federal government to prioritise the welfare of Nigerians living with inherited bleeding disorder also known as haemophilia by supporting access to diagnosis and treatment of the disease.
This is even as the foundation called on the federal government to consider waiving import duties on haemophilia drugs, which are donated by global partners and distributed free of charge to patients in Nigeria.
Speaking at a press conference in Kaduna as part of activities marking the Foundation’s 20th anniversary, the executive director and founder of the foundation, Mrs Megan Buckie Adediran, said although an estimated 24,500 Nigerians live with haemophilia, only about 500 have been formally diagnosed.
“This means over 98 per cent of Nigerians with the condition are undiagnosed,” she said, adding that early diagnosis and access to treatment remain critical challenge.
Established in 2005, she said HFN has grown from a small advocacy group into a national platform championing awareness, diagnosis and treatment of haemophilia and other inherited bleeding disorders.
“This year’s anniversary aligns with the global theme of World Haemophilia Day: ‘Access for All – Women and Girls Bleed Too,’” Adediran said. “It draws attention to the overlooked reality that women and girls also suffer from bleeding disorders but are often misdiagnosed or neglected.”
She said bleeding disorders in women were particularly dangerous during childbirth, noting that postpartum haemorrhage (PPH) remains a major cause of maternal deaths in Nigeria. Citing data from the Federal Ministry of Health, she said nearly 57,000 women died from childbirth-related complications in 2023, with PPH accounting for 22 per cent of the fatalities.
Adediran said cultural myths and lack of awareness continue to hinder efforts to tackle the condition. “Haemophilia is not witchcraft, it is a medical condition,” she said.
She appealed to the federal government to include haemophilia treatment in national health priorities by ensuring the availability of clotting factor medication in government hospitals.
“ A person with Haemophilia is missing in clothing protein called factor, bleeds longer not faster, the disease is not contagious, it has treatment but no cure”.
She also called on the Federal Ministry of Finance to waive import duties on haemophilia drugs, which she noted are donated by global partners and distributed free of charge to patients.
Mrs Adeniran disclosed that the foundation has attended to no fewer than 878 patients since the inception of the foundation, stressing that people should not be afraid to seek help when they suffer from bleeding beyond normal, adding that most people live with bleeding disorders without knowing.
Some beneficiaries of the free hemophilia drugs shared emotional testimonies during the event. Victor Ogochukwu, who lost a sibling to the condition, said meeting the foundation’s founder changed his life.
Timothy Adediran, who had undergone eight blood transfusions before age 10 and is now 29 years old, said that support from the Foundation helped him regain stability.
For Adamu Idris, he said, access to ‘Factor’ — the clotting medication — has allowed him to live a more normal and productive life and he recently got married.
The event ended with calls for government, corporate organisations, and individuals to rally behind the foundation’s efforts to ensure that people living with haemophilia in Nigeria receive the care and dignity they deserve.
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