Members of Parliament (MPs) have backed a proposal to include haemophilia treatment under the Social Health Authority (SHA), paving the way for patients with the rare bleeding disorder to access specialised care through public health insurance.
The National Assembly Health Committee approved a petition seeking comprehensive health cover and directed the Ministry of Health, SHA and the Benefits Package and Tariffs Advisory Panel to develop benefit packages within six months.
The Committee, in a report tabled before the House, said the proposed haemophilia package should be provided under the Primary Health Care Fund, the Social Health Insurance Fund and the Emergency, Chronic and Critical Illness Fund.
“The package should cover clotting factor infusions, specialist consultations, hospital admissions, physiotherapy, laboratory diagnostics, screening and psychosocial support for patients,” reads the report.
The Ministry has been given six months to report back to Parliament on the progress made in developing the proposed benefits.
Beyond access to treatment, MPs also want haemophilia patients and their caregivers recognised as vulnerable persons eligible for social protection.
The Committee further recommended that haemophilia be classified as a disabling condition under the Persons with Disabilities Act, 2025, allowing patients to access legal protections and support available to persons with disabilities.
Haemophilia is an inherited bleeding disorder caused by a deficiency of clotting factors, which results in prolonged or spontaneous bleeding, especially into joints and vital organs.
Without proper treatment, repeated bleeding episodes can lead to permanent joint damage, disability and reduced life expectancy.
Kenya is estimated to have about 5,500 people living with haemophilia, but only 1,265, representing about 23 per cent, have been diagnosed and enrolled for treatment.
This leaves thousands of patients without access to specialised care for the condition.
Treatment remains costly for many families and is currently not covered by SHA. Severe cases can cost between $30,000 and $230,000 (Sh3.9 million to Sh30 million) annually, while a single clotting factor injection costs about Sh50,000.
Advanced treatment, estimated at around Sh1 million per month, is currently available to only a small number of patients through trial programmes.
Kenya also depends largely on donor-funded clotting factor concentrates provided through a World Federation of Haemophilia programme worth about $20 million annually. The programme supplies only about 30 per cent of the country’s needs.
The agreement is expected to expire in early 2027, raising concerns over a possible treatment crisis if sustainable financing is not secured.
The Committee, chaired by Seme MP James Nyikal, called on the government to classify clotting factor concentrates as essential medicines and establish additional haemophilia treatment centres across the country.
MPs also recommended strengthening diagnostic services, improving healthcare worker training and increasing public awareness to promote early diagnosis of the condition.
The petition was presented by the Kenya Haemophilia Association, which warned that without urgent government intervention, thousands of patients could lose access to life-saving treatment once donor support ends.
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