Patients call on parliament to act as bleeding disorder support fades

A petition tabled in the National Assembly has raised alarm over the management of haemophilia and other bleeding disorders in Kenya, warning of an impending treatment crisis that could endanger thousands of patients, especially children. The petition, submitted by James Kago, Treasurer of the Kenya Haemophilia Association, calls on the parliament to intervene urgently to improve diagnosis, treatment, and funding for the rare hereditary condition that affects blood clotting.While presenting the petition to the parliament, Speaker Moses Wetang’ula said it had been received, and that it is in accordance with Article 119 of the Constitution, which allows any person to petition Parliament to consider matters within its authority.“The right to health is a fundamental human right guaranteed under Article 43 of the Constitution, which provides that every person, including children, has the right to the highest attainable standard of health, including access to healthcare services,” the petition states.The petitioner argues that patients living with haemophilia in Kenya continue to face major barriers to accessing proper care.According to the petition, individuals with haemophilia, among them children, experience frequent and unpredictable bleeding episodes that can be life-threatening if not treated promptly.These episodes often result in severe complications, including disabling joint disease, chronic pain, missed school or work, and reduced life expectancy.Haemophilia is a hereditary condition in which the body lacks clotting factors required to stop bleeding.

Patients require specialised treatment using clotting factor concentrates to control or prevent bleeding.Without such treatment, even minor injuries can easily lead to prolonged bleeding and severe health complications.The petitioner notes that preventive treatment, known as prophylaxis, is particularly critical for children but remains extremely costly and difficult to access in Kenya.Families caring for haemophilia patients are therefore forced to endure significant physical, emotional, and financial strain while seeking treatment.The petition further reveals that haemophilia affects roughly one in every 10,000 people.In Kenya, this translates to 4,500 patients per 10,000 people, but only 1,265 have been diagnosed.

This gap, the petitioner says, demonstrates the urgent need for nationwide screening and early detection programmes.“Existing data on haemophilia and bleeding disorders is fragmented, uncoordinated and incomplete,” the petition states, calling for the establishment of a national patient registry to capture accurate diagnostic and treatment information.Such a registry would help improve planning and delivery of specialised services across the country.

A major concern raised in the petition is the country’s heavy reliance on donor-funded treatment supplies.Currently, clotting factor concentrates, critical medicines used to manage haemophilia, are largely obtained through donations.The petitioner states that these supplies meet only 30 per cent of the required treatment needs for the 1,265 diagnosed patients.In addition, the donor programme currently supporting Kenya’s haemophilia treatment is expected to end by 2028, creating fears of a major healthcare gap.“This programme already has a deficit of about 70 per cent of the required factor levels,” the petition notes.Without alternative funding, families may also be forced to rely on blood-derived products that require hospital admission and may expose patients to complications.Further, the petition states that only a few fully operational haemophilia treatment centres exist in the country, making it difficult for patients, especially children, to receive timely care.The petitioner recommends the establishment of additional treatment centres in referral hospitals across Kenya, equipped with diagnostic machines for coagulation testing.The centres should also provide supportive services such as physiotherapy and specialised paediatric care.To address these challenges, the petitioner is urging Parliament to make several key recommendations to the government.Among them is the formal recognition of clotting factor concentrates as essential medicines, ensuring their consistent availability in the Kenyan healthcare system.The petition also calls on the Ministry of Health to expand haemophilia treatment centres, enhance diagnostic capacity, and improve training for healthcare workers, including paediatric specialists.Additionally, it recommends the inclusion of haemophilia management in medical training curricula and increased public awareness campaigns, particularly focusing on early childhood screening.The petitioner further proposes that haemophilia be recognised as a disabling condition, allowing patients to be registered with the National Council for Persons with Disabilities (NCPWD).Such recognition would enable them to access disability support and enhanced medical coverage under the Social Health Insurance Fund (SHIF).Initially, Speaker Wetang’ula had indicated that the petition would be referred to the Public Petitions Committee.However, he later changed the decision, noting that the matter was too specialised.“This matter is too complicated for the Public Petitions Committee,” he said. “I want to refer it to the Departmental Committee on Health.”The committee is chaired by Dr James Nyikal, a former Director of Medical Services and Permanent Secretary in the Ministry of Health.Members of Parliament who contributed to the debate acknowledged the seriousness of the issue and urged the government to prioritise funding for haemophilia treatment.Endebess MP Dr Robert Pukose described haemophilia as a complex hereditary disease that cannot be treated through ordinary blood transfusions.“It is treated using factor concentrates, which are imported into the country,” he said.Pukose warned that the impending withdrawal of donor support could leave patients extremely vulnerable.“As a country, we must allocate funds because donors have been fully funding this treatment. We need to protect haemophiliacs in this country,” said Pukose.Kitui South MP Rachael Nyamai echoed the call for increased health funding, saying Kenya must begin investing more in the treatment of rare diseases.“It is high time we take health funding very seriously,” said Dr Nyamai.Leader of the Majority Party Kimani Ichung’wah also supported the petition, noting that haemophilia remains poorly understood and inadequately treated in Kenya.He revealed that he had previously met representatives of the Kenya Haemophilia Association together with members of the Health Committee to discuss the issue.Ichung’wah said the country urgently needs more haemophilia treatment centres beyond Kenyatta National Hospital (KNH) and Mbagathi County Referral Hospital, where services are currently available.“Many people, especially young children, die because they are not properly diagnosed or there are no clotting factor concentrates near them,” he said.The MP also supported calls for haemophilia to be recognised as a disability to enable patients to receive additional support beyond standard health insurance coverage.In response, Dr Nyikal assured the House that the Departmental Committee on Health would examine the petition in detail.He noted that the petition had highlighted critical issues, including blood transfusion practices, health insurance coverage, and the classification of haemophilia as a disability.“The petitioner has looked into the broad areas of this issue,” Dr Nyikal said, adding that the committee would analyse the concerns and make appropriate recommendations.The committee is expected to investigate the matter and report its findings to the National Assembly and the petitioner as required under parliamentary Standing Orders.

For thousands of Kenyan families living with haemophilia, the outcome of the parliamentary inquiry could determine whether life-saving treatment becomes accessible or increasingly out of reach.