New Dawn for Haemophilia and Sickle Cell Patients
A New Chapter for Blood Disorders in Kenya
When Humphrey Haji stepped up to the podium at the Best Western Hotel in Nairobi, he paused before speaking. For someone who has lived with haemophilia since birth, standing in front of a room filled with policymakers, clinicians, and partners was a rare moment of hope. His journey has been shaped by the challenges of a condition that affects his ability to clot blood, leading to severe bleeding even from minor injuries.
Humphrey’s first episode of unusual bleeding occurred when he was just five years old. In 2007, after a fall while playing football, he was diagnosed with haemophilia and spent months in crutches. “I have lived with haemophilia since I was born,” he later explained. “There are challenges every day—home, school, and even explaining what it is to people who don’t understand.”
Humphrey was among patients and stakeholders who witnessed the Novo Nordisk Haemophilia Foundation (NNHF) unveil its expanded identity as the Novo Nordisk Haemophilia and Haemoglobinopathy Foundation (NNHHF). This marked the organization's entry into supporting patients with sickle cell disease and thalassemia. For Humphrey, this shift meant more than a name change—it symbolized a new chapter in the fight against these conditions.
Understanding the Conditions
Haemophilia is a genetic disorder that impairs the body's ability to form blood clots, often due to a deficiency in clotting factors like factor VIII. Sickle cell disease, another inherited condition, causes red blood cells to become rigid and crescent-shaped, leading to blockages in blood flow. Thalassemia, similarly, affects hemoglobin production, resulting in fewer healthy red blood cells.
Dr. Natasha Honan, Senior Advocacy and Communications Manager at NNHHF, emphasized the foundation’s expansion as a response to real needs across Africa. “Today marks the expansion of the Foundation,” she said. “We are now able to support people living with sickle cell disease and thalassemia.” She noted that the majority of the global burden of these diseases lies in low- and middle-income countries, where access to care is often limited.
Kenya has been a key partner for over a decade, and the foundation plans to deepen its support. “We have worked closely with the Kenya Haemophilia Association to improve diagnosis and outreach,” Honan added. The integrated care model introduced in 2019 allows patients with haemophilia and sickle cell disease to receive services under one roof, making the patient journey easier.
Challenges in Diagnosis and Treatment
Despite progress, diagnosis remains a major challenge. Dr. Yvette Kisaka, Technical Lead for Non-Communicable Diseases (NCDs) at the Ministry of Health, highlighted the long-standing neglect of these conditions. “These conditions have been neglected for a very long time,” she said. “Our goal is to provide the highest quality of care without leaving anyone behind.”
Kenya has introduced infant screening guidelines and updated treatment protocols, but diagnosis rates remain low. “We are now screening children beyond six months to ensure no cases are missed,” Kisaka explained. She also mentioned the existence of treatment guidelines for sickle cell and haemophilia, aiming to equip healthcare workers with the right tools to manage these conditions.
Estimates suggest there are over 1,000 known haemophilia patients in Kenya, though the actual number is likely higher. “For that one person who is unsure if they will be able to get up tomorrow, it is a big issue,” Kisaka said. “Even one child living with chronic pain or fear of bleeding is one too many.”
Financial and Medical Barriers
Dr. Jeremiah Shem, Chair of the Medical Advisory Committee at the Kenya Haemophilia Association, pointed out that diagnosis and financing remain significant barriers. “We have 1,430 haemophilia cases diagnosed out of an expected 6,000,” he said. “Diagnosis is expensive—up to Sh10,000 per test.”
However, partnerships have helped bring modern diagnostic equipment into the country, reducing the need to send samples abroad. “Now we can diagnose locally and faster,” Shem noted. Medication, however, remains a challenge. Hydroxyurea for sickle cell disease is becoming available in county hospitals, and some haemophilia treatments are now free thanks to partners.
A Moment Filled with Hope
As the new horizon was unveiled, Humphrey reflected on the significance of the day. “There are many of us who struggle silently,” he said. “This new beginning gives us hope. If we diagnose early and support families, many people can live full lives.”
He also noted that nearly 2,500 people are currently on care, and awareness and advocacy have made a difference. “If the government and partners do more, many people will live normal lives,” he said.
For Kenya’s blood disorders community, the message was clear: a long-awaited chapter has finally begun. With continued collaboration and investment, the future looks brighter for those affected by these conditions.
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