The Kenya Haemophilia Association (KHA) is appealing to both national and county governments to consider budgeting funds for the treatment and management of haemophilia conditions.
The association’s board member, James Kago, noted that treatment of haemophilia conditions in the country is currently supported by international partners.
Haemophilia is a rare inherited bleeding disorder where blood does not clot properly due to a deficiency in certain clotting factors, which can lead to prolonged bleeding after injuries, surgeries, or spontaneously.
Kago on Thursday observed that through the support of global partners, including the World Federation of Hemophilia and Novo Nordisk Haemophilia Foundation, his association is supporting treatment for more than 1,000 haemophilia patients in the country.
“KHA has built 25 haemophilia treatment centers in the country. But donations are drying up. Kenya is slipping back to unsafe practices like plasma and whole blood transfusions. This is not care; it is a last resort,” said Kago during World Haemophilia Day celebrations held at Murang’a Level 5 Hospital.
The government, he noted, needs to set funds in the national budget for the treatment of the condition, saying haemophilia drugs are very expensive.
“Despite advancements in medical science, living with haemophilia in Kenya remains a daily risk, a fight not just against the disorder, but against systemic neglect and stigma.
“Haemophilia, a rare but treatable bleeding disorder, becomes fatal only when care is denied. Yet, time and again, patients in Kenya are left to suffer and die in silence from the disease and the ostracisation,” explained the board member.
Kago revealed that the country spends Sh2 billion for the treatment and management of haemophilia patients annually.
“Treatment of the condition is very expensive, and we thank God that we currently have donors. A dose for a child with haemophilia costs Sh50,000, while that of an adult goes for Sh300,000. Very few families can afford this treatment.
“It’s unfortunate haemophilia is not catered for under the Social Health Authority, and we appeal to the government to factor the condition under SHA,” he added.
Kago further lauded the government for waiving taxes on haemophilia drugs, saying that’s not enough as they appeal to the government to procure and fund treatment products.
“No clotting-factor concentrates are registered with the Pharmacy and Poisons Board. Public hospitals are ill-equipped to diagnose or treat haemophilia,” the board member observed.
He asked the government to allocate sustainable funding for a consistent national supply of clotting factor concentrates.
“There is also a need to equip our health facilities with equipment for diagnosing the condition and also to train health workers at all levels on diagnosis and emergency care,” he added.
Meanwhile, Kago said the Ministry of Health needs to prioritize screening and diagnosing women with bleeding disorders.
He remarked that some women, especially those with prolonged menses, may have haemophilia but are not aware.
On her part, the nurse in charge of the haemophilia clinic at Murang’a Level 5 Hospital, Ms. Judy Mwaura, said the facility caters to patients with the condition from the entire central region.
Ms. Mwaura noted that patients suffer when they travel for treatment at the clinic, asking the government to consider establishing haemophilia clinics in more health facilities.
“We have been training parents to help their children with the condition give first aid. This helps to stabilize the child before reaching the hospital. We also appreciate donors who have helped us access the factor concentrates,” she added.
A haemophilia patient, Stanley Mwangi, said he initially suffered for many years before realizing he had the condition.
“Some years back, it was not easy to access haemophilia treatment, but since 2018, when a clinic was established here at Murang’a Level 5, we can get treatment easily. The government needs to sensitize people about this condition since many people are not aware of haemophilia. The condition mostly affects boys,” he stated.
Mwangi added that he depends on support from his relatives since the condition denies him the opportunity of doing physical work that can earn him a livelihood.
Daina Nthiga, who has a child with haemophilia, noted she travels from Kirinyaga to Murang’a to have her child treated.
Ms. Nthiga said she can’t leave her child alone, saying this has denied her the chance to engage in economic activities.
“If treatment can be accessed in all county public hospitals, this can support parents of children with haemophilia conditions,” she added.
By Bernard Munyao
