East African lawmakers are calling for coordinated action to improve the diagnosis and treatment of haemophilia, a rare bleeding disorder in which blood does not clot properly, warning that limited access to healthcare can leave patients facing preventable complications, lifelong disability and financial hardship. The call follows a motion moved on Monday, October 12, by Rwandan member of East African Legislative Assembly (EALA) Clément Musangabatware at the regional assembly, which brings together representatives from East African Community (EAC) Partner States. ALSO READ: The trials and tribulations of Living with haemophilia The motion urges the EAC Council of Ministers and Partner States to recognise haemophilia and other inherited bleeding disorders as priority health conditions and integrate their management into national health policies, health insurance schemes and universal health coverage programmes. It was seconded by Kenyan legislator David Ole Sankok during a plenary sitting in Arusha, Tanzania. Musangabatware said Rwanda faces several challenges in managing the condition, including limited public awareness, a shortage of health workers trained in haemophilia care, a lack of research, and limited data on the number of people living with the disorder. He also cited limited access to treatment and medication, noting that the high cost of medicines remains a challenge. The motion seeks a coordinated regional response to address similar gaps in the prevention, diagnosis and treatment of inherited bleeding disorders across East Africa. Haemophilia is a genetic/acquired disorder in which blood does not clot properly because the body lacks sufficient amounts of specific clotting factors. People living with the condition may experience prolonged bleeding following injuries or spontaneous bleeding into joints and muscles. Without appropriate treatment, repeated bleeding can cause chronic pain, permanent joint damage and disability. Severe bleeding can also be life-threatening. According to the motion, haemophilia A affects approximately one in every 5,000 male births globally, while haemophilia B affects about one in every 25,000 male births. The motion identifies the absence of comprehensive epidemiological data, patient registries and coordinated surveillance systems as major obstacles to understanding the regional burden of the conditions. It also points to delayed diagnosis, limited public awareness, inadequate laboratory capacity, shortages of specialised treatment facilities and insufficient training of healthcare workers as barriers to effective care. Without reliable data, governments can struggle to determine how many patients need treatment, which services are missing and how much funding is required to address the gaps. ALSO READ: Hemophilia patients to get free medication To address these challenges, the motion calls for the development of an EAC Regional Framework for Haemophilia and Other Inherited Bleeding Disorders. The proposed framework would cover diagnosis, treatment, rehabilitation, workforce training, patient support, research and regional cooperation. The lawmakers are also urging EAC countries to establish national patient registries and progressively link them through a regional information system. The proposed system would help track the number of affected people, their treatment needs, health outcomes and gaps in service delivery, while protecting patient confidentiality. Another proposal is to improve access to affordable, safe and quality-assured diagnostic services, medicines and related technologies. The motion identifies the EAC Pooled Procurement Mechanism and regional harmonisation of medicines regulation as possible ways to support access to essential medical supplies. Pooled procurement can allow countries to coordinate purchasing rather than negotiate separately, potentially improving their ability to secure essential medicines. However, the extent to which this mechanism could reduce the cost of haemophilia medicines would depend on procurement arrangements, available supplies and participating countries. The motion also calls for haemophilia care to be incorporated into national health insurance and social protection systems, potentially helping affected households manage the financial burden of long-term treatment. Beyond the health sector The consequences of inadequately treated haemophilia extend beyond hospitals and medical facilities. The motion warns that inherited bleeding disorders can affect productivity, education, household incomes and social inclusion. Children whose conditions are not properly managed may miss school because of bleeding episodes or medical appointments. Adults can lose working days or struggle to maintain employment because of pain, mobility limitations and repeated hospital visits. Family members may also have to reduce their economic activities to care for affected relatives, placing additional pressure on household incomes. Repeated bleeding episodes can lead to emergency admissions, surgery and long-term rehabilitation. Where preventive treatment is unavailable, patients may develop complications that require more intensive care. The motion argues that better diagnosis, preventive treatment, specialised care, physiotherapy and psychosocial support can help reduce complications and improve the quality of life of people living with haemophilia. It calls for regional cooperation on awareness, research, surveillance and patient support, alongside efforts to make treatment more accessible. The motion was moved and debated during Monday’s plenary sitting. Its adoption by the Assembly had not been confirmed at the time of publication.
