An overview of patients with haemophilia A in China: Epidemiology, disease severity and treatment strategies

Haemophilia, 27 November 2020

As part of an effort to advance the understanding of hemophilia in China, Analysis Group consultants have collaborated with researchers from the Institute of Hematology & Blood Diseases Hospital (IHBDH) to leverage China’s first comprehensive blood disease research platform, the National Longitudinal Cohort of Hematological Diseases in China (NICHE), a multi-disease cohort designed to study an array of hematological conditions such as hemophilia, acute myeloid leukemia, lymphoma, and multiple myeloma.

One such study, “An overview of patients with haemophilia A in China: Epidemiology, disease severity and treatment strategies” (coauthored by Managing Principal Eric Wu and Vice President Jia Zhong, and published in the journal Haemophilia), analyzes medical histories from 17,779 patients from 166 member hospitals of the Hemophilia Treatment Center Collaboration Network of China between 2007 and 2019. Researchers found that 44% of patients received only episodic, on-demand treatments, while only 16% received prophylactic clotting treatments. Further, nearly 60% of patients had joint bleeding, and 36% had joint arthropathy, indicating that their treatments were inadequate.

A possible contributing factor to these patterns may have been that prophylactic clotting treatments are rarely reimbursed for adult patients. And even though these treatments are reimbursed for pediatric patients, parents do not always accept the use of prophylaxis due to the lack of awareness and different health beliefs. In contrast, prophylaxis use for adult patients in the UK during the same period was 78%, and 75% in the US. These large gaps reiterate the need to improve hemophilia A treatment accessibility and prophylactic care affordability in China.

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Song X, Zhong J, Xue F, Chen L, Li H, Yuan D, Xie J, Shi J, Zhang L, Wu E, Yang R