Uche Kennedy: Hemophilia Care Needs Systems Reform, Not Short-Term Fixes
Uche Kennedy, Digital Communications Specialist at Nigeria Health Watch, shared a post on LinkedIn:
”Hemophilia is often described as ‘rare.’
But after spending two days in conversations around inherited blood disorders, I keep thinking that what’s actually rare is a health system that truly supports people living with it.
At the Inherited Blood Disorders Leadership Forum in Abuja, the discussions went far beyond medicine. Again and again, haemophilia showed up as a mirror reflecting deeper issues: gaps in financing, weak data systems, fragmented care, and the heavy burden placed on families to navigate it all on their own.
One key takeaway for me: Lifelong conditions cannot depend on short-term solutions. They need predictable financing, integrated care at the primary healthcare level, insurance that actually works, and data that guides decisions rather than reacts to crises.
What stood out wasn’t just the expertise in the room, but the clarity. When haemophilia is treated as an afterthought, people fall through the cracks. When recognised as a systems issue, the conversation shifts to policy coherence, coordination, sustainability, and accountability.
Kudos to the NSHBT Official, National Blood Service Agency, Nigeria, Novo Nordisk Foundation, and the Novo Nordisk Haemophilia & Haemoglobinopathies Foundation, for convening this timely dialogue.
Now the real question is:
How do we move from strong conversations to clear timelines, measurable commitments, and care that works consistently for people living with haemophilia?”
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