Finn Guo: Access and Affordability Challenges for Von Willebrand Disease in China
Finn Guo, Director of Information Research at Illness Challenge Foundation, shared on LinkedIn:
”Von Willebrand disease is frequently misdiagnosed or overlooked.
Unlike Hemophilia, patients with VWD often lack the carrier protein that stabilises and transports clotting factor, rather than the clotting factor itself.
As a result, treatment approaches designed for hemophilia are not always clinically appropriate for VWD.
In China, the only approved therapy for VWD has not yet been included in the National Reimbursement Drug List (NRDL).
With annual treatment costs reaching tens of thousands of USDs, many patients remain unable to afford sustained care.
At this stage, one of the few mechanisms that can partially alleviate the financial burden is Inclusive Commercial Health Insurance (ICHI).
This creates a practical space for evidence-based advocacy: patient communities can work with industry and other stakeholders to support the inclusion of appropriate therapies within ICHI schemes.
Three priorities are particularly important:
- Clarifying the disease image — differentiating VWD from hemophilia in public and policy understanding.
- Articulating specific clinical needs — recognising that hemophilia treatment models may not apply.
- Communicating the real-world affordability gap — when annual costs reach tens of thousands of dollars, access becomes structurally constrained.
Advancing equity in rare bleeding disorders requires accurate diagnosis, appropriate therapy, and payment pathways that reflect clinical reality.”
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