When employers discover he has haemophilia, Sanusi Bolaji is usually sacked. It has happened 16 times. Bosses don’t like it that the graphic designer, from Akure in Nigeria, has to take days off sick, or they don’t believe he can do the job properly because of his illness.
The 29-year-old now freelances from home. He had to give up his ambition to be an electrical engineer because employers felt the physical demands of the work were too hazardous for him.
“It has been a major challenge in my life. A single cut on my skin comes with excruciating pain that cannot be expressed with words. A lot of people do not know what haemophilia is about and that’s why they discriminate against people like me,” he says.
An estimated 1.12 million men around the world have the inherited bleeding disorder, in which the blood does not clot properly – women can have mild haemophilia but people with the severe type are almost always men. Africa has fewer than 3% of cases, but with little testing available, a lack of awareness of the condition and a belief in some places that haemophilia results from witchcraft, the figure could be higher. Only 2% of those who are diagnosed receive treatment, making it one of the most ignored conditions on the continent.
“Africa is home to over a billion people, but only a small fraction of those living with haemophilia have been identified,” says Johnny Mahlangu, professor of haematology at the University of the Witwatersrand in South Africa. “Without accurate data, it is difficult for governments to provide quality treatment to those in need,” says Mahlangu.
There is no government-funded treatment or a patients’ register for haemophilia in Nigeria. Patients wanting the expensive clotting factor concentrates they need for regular injections have to buy them privately or visit one of 15 blood transfusion centres in hospitals, run by the Haemophilia Foundation of Nigeria (HFN), a charity launched by Megan Adediran in 2005 after her son was diagnosed. At the time, she couldn’t access any treatment in Nigeria, and eventually got help from the World Federation of Hemophilia in Canada.
“There has been no support from the Nigerian government,” says Adediran. “If not for the donations from international organisations, people living with haemophilia in Nigeria would have been left to die. Diagnosis in public hospitals remains expensive to poor people in rural areas.”
HFN raises money, awareness and lobbies for government action. It also helps patients pay for hospital care.
The foundation had a breakthrough in 2021 when Adediran persuaded the Nigerian government to officially recognise haemophilia as a blood disorder and include it in the updated non-communicable disease policy.
But it brought no practical change for patients.
“We cannot continue to rely on donations for ever. Nigerians living with haemophilia have a right to quality healthcare,” says Adediran.
Mahlangu says it is important governments take a more active role in improving care. “This will not only improve the lives of those living with the condition, but also reduce the need for foreign aid. By investing in healthcare infrastructure and domestic manufacturing of drugs, African nations can become more self-sufficient in addressing the needs of haemophiliacs.”
Creating a robust healthcare system should be a top priority for all African governments, he adds.
But most countries are not meeting their obligation to allocate at least 15% of their national budget to healthcare under the African Union’s Abuja declaration. Successive Nigerian governments have allocated less than 10%. Healthcare professionals are leaving the country in large numbers to seek better opportunities overseas because of poor pay and conditions. According to the Nigerian Medical Association (NMA), the health sector is losing approximately 50 doctors every week.
“I don’t think the government is really aware of what haemophiliacs are going through,” says Benjamin Onoje, a member of the Nigerian security forces who has the condition.
His duties are administrative, and his managers allow him to stay at home if he is unwell.
He relies on HFN for treatment, which he couldn’t afford on his salary. A dose of the clotting agent, needed after an injury, can cost as much as 2,832,750 naira (about £4,900) because it needs to be bought in from overseas. The minimum monthly salary in Nigeria is just 30,000 naira (£52).
Dr Sani Abubakar, in the haematology department at the Usmanu Danfodiyo University teaching hospital, in Sokoto, north-west Nigeria, says there is no clear government policy. “The only support I know the government is rendering is removing tax duties for clot factor concentrates imported into the country, but that is not enough. We need quality healthcare for people living with haemophilia,” he says.
The Ministry of Health did not respond to requests for comment.
