Analysis on the Treatment Costs and Protection Levels of Rare Diseases in China Based on Hemophagocytic Lympho-histiocytosis and Still's Disease
- VernacularTitle:基于噬血细胞综合征和斯蒂尔病的我国罕见病治疗费用及保障水平分析
- Author:
Mingyue LI
1
;
Jiaqi LIU
;
Peipei CHAI
;
Quan WAN
Author Information
1. 北京市垂杨柳医院 北京 100022
- Publication Type:Journal Article
- Keywords:
rare disease;
Hemophagocytic Lymphohistiocytosis;
Still's disease;
treatment cost;
protection level
- From:
Chinese Health Economics
2025;44(7):51-54
- CountryChina
- Language:Chinese
-
Abstract:
Objective:To explore the differences in the cost structures of Hemophagocytic Lymphohistiocytosis(HLH)and Still's disease,and provide a basis for optimizing the medical insurance and hierarchical diagnosis and treatment policies for rare diseases.Methods:Based on the theories and methods of SHA 2011,the treatment costs and financing models of HLH and Still's disease in 2020 were calculated and analyzed to calculate its financing mode.Results:In 2020,the treatment cost of HLH in China was 436 million yuan,with 98.62%occurring in inpatient services;the treatment cost of Still's disease was 159 million yuan,with 82.32%occurring in inpatient services.In terms of the financing composition,the proportion of household health expenditure in outpatient services for HLH reached to 65.51%;for adult Still's disease,the proportion of household health expenditure in outpatient services was 65.13%;for pediatric Still's disease,the proportion of household health expenditure in outpatient services was as high as 93.15%,and the compensation from social medical insurance was less than 4%.Conclusion:In China,there are problems such as imbalanced cost structures,uneven distribution of diagnosis and treatment resources,heavy family burdens,and differentiation in the attention paid to rare diseases.It is necessary to improve the accounting system,strengthen grassroots diagnosis and treatment,optimize the financing mechanism,increase the attention to"non-star"rare diseases,and promote universal protection.
