Finn Guo on China’s Policy in Hemophilia Care: Patients Understand Patients Best
Finn Guo, Director of Information Research at Illness Challenge Foundation, shared on LinkedIn:
”Pleased to speak at the Central China Hemophilia Joint Conference today!
Leaders from patient organizations across the country gathered together.
In China, the reimbursement barrier for hemophilia has been largely resolved.
Thanks to the multi-layered insurance mechanism, most patients have achieved “0” out-of-pocket treatment costs.
Yet several critical challenges remain:
1. Prophylactic treatment (especially regular factor prophylaxis) is still severely under-covered
2. Some innovative therapies are not yet included in the NRDL (National Reimbursement Drug List), leaving patients to pay 100% out-of-pocket
3. Gene therapy for hemophilia B, just approved in China, is still far from being truly accessible to patients
When there is a huge information gap between patients’ lived reality and policymakers, it’s hard for decision-makers to truly understand what patients go through every day—and therefore hard for them to respond with precise, impactful policies.
“Patients understand patients best.”
Our mission is to build a bridge—to translate “patient language” into “policy language,” so that government, health insurance authorities, pharmaceutical companies, and all stakeholders can truly hear, see, and feel the real situation of patients.
Under this situation, the PED is the most powerful and authentic advocacy material.”
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