Fund bleeding disease to save lives, government urged

The Kenya Haemophilia Association (KHA) has called on the government, through the Ministry of Health, to allocate more funds for the national supply of clotting factor concentrates.

They stated that the funds should also be used to scale up haemophilia treatment guidelines.

Haemophilia is a rare condition that affects the way blood clots, meaning that one bleeds more easily than other people.

The association said that adequate funding is the only way to save more than 1,000 lives at risk due to the blood disorder.

Speaking in Nairobi on Thursday during the commemoration of World Haemophilia Day, the Chair of the Kenya Haemophilia Association, Karanja Njoroge, said that 25 lives have been lost in the past four years.

Njoroge stated that these lives could have been saved. He added that despite advancements in medical science, living with haemophilia in Kenya remains a daily risk.

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This is because the fight is not just against the disorder, but also 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,” said Njoroge.

He highlighted the challenges surrounding haemophilia care, as well as the patients who need it.

Haemophilia is not covered by the Social Health Insurance Fund (SHIF), and the government does not procure or fund treatment products.

The clotting factor concentrates are registered with the Pharmacy and Poisons Board. However, private hospitals lack stock due to their high cost. There is also low awareness around diagnosing or treating haemophilia, and public facilities are not well-equipped.

East African Legislative Assembly (EALA) member and disability rights champion David Ole Sankok complained about the delays in enacting the petition he submitted to Parliament in 2019.

“Parliament adopted the petition. A Ministry of Health-led task force, with KHA’s support, proposed a Sh500 million supplementary budget. The funds were approved but never disbursed. The pandemic came and went, and haemophilia patients are still waiting, while some, unfortunately, have succumbed to the disease,” said Sankok.

He also called on the Ministry to end the gender gap in care by prioritising early screening and diagnosis of women with bleeding disorders, many of whom are misdiagnosed or ignored.

“Too many women with bleeding disorders suffer undiagnosed, especially during childbirth. KHA calls for haemophilia care to be fully integrated into maternal and reproductive health services. No mother should die giving life,” said Sankok.

Kibet Shikuku, a member of the association and a doctor who treats haemophilia patients at Kenyatta National Hospital, said that he looks forward to the day when the Ministry of Health mandates universal screening in all public and private healthcare facilities.

He said this would help identify bleeding disorders before any surgical procedures, including circumcision, are performed. He argued that too many lives have been lost on operating tables simply because no checks are done.