Hemophilia Is Not a Curse!’: Kenyans Demand Action as 940 Patients Struggle with Soaring Treatment Costs
“Some people say my son’s illness is because I’m cursed. Others believe I brought shame to my family. I’ve faced isolation, even from relatives.
Samwel Isaji addresses the media at the Memorial Wing of Moi Teaching and Referral Hospital during World Hemophilia Day commemorations
As the world observes World Hemophilia Day on April 17, a growing outcry is rising from patients and medical advocates in Kenya. The call is clear: increase access, end the stigma, and make treatment affordable. With over 940 patients, including children, currently undergoing treatment at leading health institutions like Moi Teaching and Referral Hospital (MTRH) and Kenyatta National Hospital (KNH), the nation is waking up to the harsh realities facing those with this rare yet serious disorder.
Understanding Hemophilia: A Silent, Inherited Struggle
Hemophilia is a lifelong bleeding disorder caused by a deficiency in clotting factors—proteins in blood that help control bleeding. The condition mostly affects males, and globally it occurs in about 1 in every 5,000 male births. Hemophilia A (Factor VIII deficiency) is more common than Hemophilia B (Factor IX deficiency), but both can lead to internal bleeding, joint damage, and in severe cases, death if left untreated.
Yet, despite medical advancements, myths and ignorance persist.
“Hemophilia is not witchcraft, a curse, or a punishment. It is a medical condition that can be managed with the right care,” emphasizes Samwel Isaji, a clinical representative for hemophilia patients in western Kenya.
The Hidden Burden: Families Fight in Silence
Behind each diagnosis is a family caught between confusion, stigma, and financial devastation.
Geoffrey Mosongo, a 46-year-old father of two, was diagnosed at the age of three. For years, his bleeding episodes baffled local doctors in Kisii—until a German medical missionary correctly identified his condition. Geoffrey’s life was transformed, but not made easy.
“I lived on blood transfusions. I’ve spent decades in and out of hospitals. Now I’m on medication, but it’s expensive—almost impossible to afford without support.”
His plea is echoed by Lucy Macharia, the mother of a 15-year-old secondary school student with severe Hemophilia A. Lucy says the journey has been both emotionally and socially painful.
“Some people say my son’s illness is because I’m cursed. Others believe I brought shame to my family. I’ve faced isolation, even from relatives. And the worst part is not the stigma—it’s watching your child in pain and knowing you can’t afford the medicine.”
Price of Survival: A KSh 70,000 Dilemma
Managing hemophilia requires regular injections of clotting factor concentrates, which are not only scarce but extremely expensive.
“Each vial costs KSh 70,000, and patients often need two to three vials per treatment episode,” says Dr. Samwel Misiani Mbunya, an advocacy consultant working with MTRH, AMPATH, and Innovative Hematology. “The costs are simply unsustainable for ordinary Kenyan families.”
This burden has led to widespread under-treatment, misdiagnoses, and tragic outcomes, especially in rural areas.
“We know there are people out there—especially in the villages—who are bleeding and don’t even know they have hemophilia. Our goal is to trace these patients, map family histories, and intervene early,” adds Isaji.
Hope on the Horizon: Specialized Clinics and Outreach Programs
In recent years, Kenya has begun taking small but significant steps. The Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu has launched a dedicated clinic to serve patients with hemophilia and sickle cell anemia. The clinic offers holistic care, including physiotherapy and early screening.
However, the need far outweighs the available infrastructure.
“We are still at the beginning stages. We need a national strategy, government commitment, and an emergency supply of clotting factors in all referral hospitals,” says Dr. Misiani.
Changing the Narrative: From Stigma to Support
Medical experts and advocacy groups are working tirelessly to raise awareness and debunk myths. Education campaigns are targeting both rural communities and urban centers, highlighting the hereditary nature of hemophilia and the importance of early intervention.
For women, the struggle is twofold. They often face societal blame as “carriers” of the disorder, leading to broken relationships, social isolation, and mental health challenges.
“We are not to blame,” says Lucy. “What we need is support, not judgment.”
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