Haemophilia: A little-known but very real and costly disease

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Santé（https://en.ibihe.org/category/economie/sante/）

Haemophilia: A little-known but very real and costly disease

By Arthur Bizimana（https://en.ibihe.org/author/arhur/）

Mar 7, 2026

In East Africa, including Burundi, haemophilia kills not only as a disease, but also through the absence of diagnosis, the shortage of medicines, and dependence on international donations. As climate disruptions weaken the cold chain essential to treatments, this rare condition is becoming a revealing indicator of the region’s healthcare vulnerabilities. For families, every unexpected bleed can turn into a tragedy, exposing children and adults alike to serious complications, lasting disabilities, and profound economic hardship.

By Ferdinand Mbonihankuye

“Haemophilia is a hereditary blood-clotting disorder caused by a deficiency in clotting factors,” explains Dr Stella Rwezaula, consultant haematologist at Muhimbili National Hospital and lecturer at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar es-Salaam, Tanzania. President of the Tanzania Haemophilia Society, she was speaking during a telephone interview about the medical and structural challenges posed by this rare disease in the region.

“The main symptom is prolonged bleeding that does not stop without treatment,” she continues. For families, it often begins with a period of confusion: a child who bleeds longer than expected, an adolescent whose knees swell painfully after minor knocks, or a patient whose bleeds recur repeatedly following a dental extraction.

A disease neither african nor European

In East Africa, haemophilia is sometimes described as a “foreign” or imported disease. This notion is medically unfounded. “Haemophilia affects all countries in the same way. It does not choose Africa or Europe,” explains Dr Rwezaula.

According to the World Federation of Hemophilia (WFH), approximately one person in every 10,000 lives with the disease worldwide. Haemophilia A, the most common form, affects one boy in every 5,000 male births, whilst form B affects approximately one in 25,000 to 30,000. These averages allow for an estimate of the theoretical number of cases in the region, often far exceeding registered figures.

In Tanzania, with more than 800,000 births per year according to the World Bank（https://data.worldbank.org/indicator/SP.DYN.CBRT.IN?locations=TZ） , approximately 160 new cases of haemophilia could appear annually. Kenya, the most populous country in the region with more than 1.3 million births per year, would account for more than 250 theoretical new cases.

In neighbouring countries, the figures are more modest but nonetheless significant: Rwanda (approximately 350,000 births per year) and Burundi (nearly 300,000) could each record 60 to 70 haemophilic boys annually — even though the vast majority are never diagnosed.

In reality, national registries record only a few dozen cases.

The World Federation of Hemophilia’s 2023 global report（https://www1.wfh.org/publications/files/pdf-1872.pdf） mentions fewer than 200 identified patients in Tanzania, fewer than a hundred in Kenya, and barely a handful of confirmed cases in Rwanda or Burundi.

This discrepancy alarms doctors. “Haemophilia is very much present here, but invisible in the statistics,” laments Dr Rwezaula. A lack of specialist laboratories, the cost of screening, and limited awareness of the disease all contribute to this invisibility. For as long as diagnosis remains a luxury, haemophilia will continue to be perceived as a distant disease — when in fact it is very much present here.

A genetic disease, but not exclusively male

Haemophilia is often described as a “male disease.” The explanation is genetic. “Haemophilia primarily affects men, as it is carried on the X chromosome,” explains Dr Rwezaula. Men have only one X chromosome: if it carries the mutated gene, the disease will manifest in its full form, in the absence of a back-up X chromosome.

Women generally carry one affected X chromosome and one functional X chromosome. In most cases, they are asymptomatic carriers. However, they are not entirely protected. “In rare cases, women may also be affected by haemophilia if both X chromosomes are mutated, or if the second X chromosome is inactive. This phenomenon is known as lyonisation,” Dr Rwezaula clarifies.

Treating the disease as “impossible” in women has consequences: female patients presenting haemorrhagic symptoms may be overlooked, misdiagnosed, or denied specialist care.

A disease That destroys in silence

The medical mechanism of haemophilia is straightforward to explain, yet it is devastating in practice. When the body lacks clotting factors, bleeding does not stop normally following an injury, surgery, or even a routine procedure.

“Circumcision can endanger the life of a boy with haemophilia,” states Dr Rwezaula. She notes that in mild forms, bleeding occurs mainly following trauma or surgery. In severe cases, it can occur spontaneously. “In severe haemophilia, patients can bleed even without any injury,” she adds.

More worryingly still, bleeding is not always visible. “Patients can wake up with bleeds in their joints or muscles,” she explains. Internal haemorrhages can be life-threatening, particularly intracranial haemorrhage. The gastrointestinal tract and urinary tract may also be affected, in which case patients vomit blood or present with blood in their stools or urine.

Haemophilia is therefore not merely a childhood disease. It is a chronic condition that can progressively damage the body, particularly when repeated joint bleeds cause chronic pain and deformities.

In Burundi, its lack of recognition has already claimed lives. Gilbert Niyonkuru, President of the Burundian Society of Persons with Haemophilia (Sobuh), speaks of this with restrained gravity. His commitment was born of personal tragedy.

“I visited almost every hospital in Burundi. Not a single healthcare professional was able to tell me what disease my child was suffering from,” he recounts.

For months, his son presented inexplicable symptoms. Consultations multiplied, without clear answers. Diagnoses wavered, treatments changed, but the child’s condition did not improve. Faced with this impasse, the father decided to cross the border.

He travelled to King Faisal Hospital in Kigali. There, doctors discovered a large haematoma on the child’s back, the consequence of a lumbar puncture carried out prior to cranial surgery. A clotting disorder was suspected.

“The doctors sent me to the University Teaching Hospital of Kigali (CHUK) to confirm or rule out the hypothesis,” he explains.

At that centre, the diagnosis was confirmed: type A haemophilia. Treatment was then initiated. With the support of the Rwanda Hemophilia Association and CHUK, the child began receiving Factor VIII, essential for blood clotting. Yet the relief remained precarious.

“I had to transport my son to Kigali every time he had an episode. Whether it was morning or evening, whether it was raining or the middle of the night, I had to cross the border,” details Niyonkuru.

After lengthy negotiations, the Rwandan doctors agreed, exceptionally, to provide him with a small supply of clotting factors, subsequently stored at Muyinga Hospital. A precarious arrangement, dependent upon goodwill and available stocks.

Then came the Covid-19 pandemic. Borders closed. Travel became impossible. “The doctors could not allow me to take medicines back to Burundi,” he says. His son died at the age of four.

Gilbert Niyonkuru, president of Sobuh (Burundian Society for People with Haemophilia). Photo credit: Ferdinand Mbonihankuye.

In 2022, devastated by this loss, Gilbert Niyonkuru founded the Burundian Society of Persons with Haemophilia, Sobuh, officially registered with the Burundian Ministry of the Interior.

Between medical ignorance and mystical accusations

“Without treatment, a patient can bleed to death,” warns Dr Rwezaula. When a child continues to bleed after a minor injury, many families in Burundi and East Africa do not think of a rare genetic disease. They think instead of witchcraft and a curse.

Several hundred kilometres from Muyinga, in the Jabe neighbourhood of Bujumbura, Blandine Kabanegeye does not contradict this observation. She revisits the early years of her son’s illness. Seated in her living room, she recounts a gradual descent into incomprehension.

“My son was under six years old when I noticed the first signs. He had bruises all over his body. His knees were swelling,” she recalls.

At the hospital, doctors initially suggested blood infections. Medicines were prescribed. Dietary advice was given. Nothing changed. Three months later, the symptoms returned, more severe.

Blandine Kabanegeye, mother of a child with haemophilia: ‘The family spends almost all its money on treatment.’ Credit: Ferdinand Mbonihankuye.

A doctor then proposed surgery to drain the fluid accumulated in the knee. In the operating theatre, however, surgeons discovered not fluid, but blood. The wound healed poorly. Bleeding persisted. The child’s condition deteriorated. “The doctor did not really know what was wrong with my son,” she says.

Around her, explanations took a different turn. Some spoke of a hex. Others of the wrath of ancestors. Her community accused her.

“We tried everything. Incantations, herbal baths, amulets. Nothing worked,” she confides.

Years passed. The family’s savings were exhausted. Eventually, the mother found more specialist medical support at the Polyclinique Centrale in Bujumbura, and then at the Roi Khaled Hospital. In-depth examinations were carried out.

The diagnosis was made: haemophilia. But the delay in treatment had left lasting damage. As a result of repeated joint bleeds, the child struggled to walk. He had to repeat his third year of primary school, unable to attend regularly.

As with the Niyonkuru family, Blandine Kabanegeye’s story reveals the failings of a system in which haemophilia remains poorly understood, frequently confused with other conditions, and sometimes interpreted through the prism of cultural beliefs.

“There is no specialist laboratory in the country. Basic coagulation tests are insufficient to confirm haemophilia and determine its type. There are no specialist doctors nor equipped laboratories to differentiate between haemophilia A and B, nor any medicines. The risks are numerous: loss of patients or permanent joint disability. Out of more than 2,000 patients that the association should be able to register according to birth prevalence（https://wfh.org/fr/article/la-fmh-a-mene-une-etude-scientifique-qui-montre-que-la-prevalence-de-lhemophilie-est-plus-forte-que-ce-qui-a-ete-precedemment-estime/） , we count only 19, of whom 18 are alive and one has died,” states Mr Niyonkuru.

A financial abyss for families

For Burundian families, haemophilia is not merely a medical ordeal. It is an economic catastrophe. A single injection of clotting factor can amount to several hundred dollars, in a country where the average monthly income is approximately twenty dollars.

Mrs Kabanegeye describes an exhausting daily routine, punctuated by visits to the hospital up to three times a week.