Masoabi Sefojane: The Hidden Crisis in Haemophilia Care
Masoabi Sefojane, Geographic Expansion Lead, Africa and Asia Pacific at MicroHealth , shared a post on LinkedIn:
”Sub-Saharan Africa has 29 countries with haemophilia treatment centres. Out of 54 nations.
When I saw that statistic, I realised something: we’ve accepted the unacceptable and called it inevitable.
The barriers to diagnosis aren’t mysterious. They’re not surprising. They’re structural, and we built them.
Limited lab capacity:
Coagulation laboratories are scarce in most African countries.
Molecular testing?
Virtually absent.
So diagnosis relies on what’s available: basic assays and pedigree analysis.
Which catches some cases.
Not all. Many slip through.
Untrained providers:
- Most healthcare workers in resource-limited settings don’t know what haemophilia looks like.
- No screening protocol.
- No knowledge transfer mechanism.
- A child with recurrent bleeding gets labelled with malaria or malnutrition.
- The actual diagnosis never happens.
Geographic distance:
- The people who need diagnosis are hundreds of kilometres from diagnostic capacity.
- That distance becomes a barrier itself. My family knew something was wrong, but travelling 300km wasn’t a casual choice. It meant time off work, money for fuel, time away from other children.
Carrier blindness:
- 64% of haemophilia carriers in Côte d’Ivoire were unaware of their carrier status, despite familial history.
How? Because no system identifies them. No screening. No education. So families repeat the same bleeding crises across generations.
Early death before diagnosis:
- In sub-Saharan Africa, circumcision is often the first surgical intervention for boys. For an undiagnosed haemophilic boy, it becomes a catastrophic bleeding event. A major cause of death before diagnosis even happens.
Here’s what I want to say clearly:
- The diagnosis gap isn’t inevitable. It’s designed.
If we asked, ‘What diagnostic system would we build if we designed it for where patients actually are?’, the answer would be completely different.
We’d bring testing to patients. We’d train local providers. We’d build registries. We’d create feedback loops so families know to screen if they’ve had a bleeding crisis.
But that requires asking a harder question first:
Do we actually want to find these patients?
Because the systems exist to find them.
We just haven’t prioritised building them where they’re needed most.”
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