Nairobi — Countries from East Africa convened at the East Africa Blood Disorders Leadership Forum to address the future of bleeding and blood disorders (BBDs) affecting citizens, such as sickle cell anemia, hemophilia, and von Willebrand disease.
The forum gathered regional leaders, patient organizations, government officials, and patients to strengthen advocacy and advance treatment and care for those impacted by these disorders.
Dr. Gladwell Gathecha, Head of the Division of Non-Communicable Diseases (NCD) in Kenya's Ministry of Health, outlined strategies from Kenya's NCD strategic plan (2021-2025) to standardize quality care for hemophilia and sickle cell patients. "We've developed guidelines for healthcare workers from Kisumu to Mombasa to ensure consistent, high-quality services for these patients," Dr. Gathecha noted. Another key strategy is the establishment of the Hematological Disease Technical Working Group, which coordinates with the Ministry of Health on blood disorder management.
Dr. Gathecha also highlighted initiatives through the Social Health Insurance Act (SHA) to cover diagnostic testing for sickle cell disease. The Emergency Chronic and Critical Illness Fund, she explained, provides additional support for people living with chronic blood disorders. "These are lifelong diseases, sometimes hereditary, and can severely impact quality of life," she added.
Dr. Kibet Shikuku, Chair of the Kenya Hemophilia Association, emphasized the importance of government involvement in patient care. "Patients don't belong to doctors--they belong to the government. Greater government involvement will fast-track solutions," he said, advocating for resource mobilization to enhance treatment access across East Africa. Dr. Shikuku cited a 75% treatment gap for blood disorder patients in the region, stressing the need for shared resources, research, and expertise to improve care.
Participants urged governments to allocate funds for locating and treating affected citizens, ensuring that BBD patients across the region receive the support they need.