The Exploration and Analysis of Constructing a Multiple Health Security System for Rare Diseases in China
10.12376/j.issn.2097-0501.2023.01.019
- VernacularTitle:中国罕见病多元保障体系建设的分析与探讨
- Author:
Libo TAO
1
;
Fangxu WANG
1
;
Fanghong JIA
2
;
Yulin YANG
3
;
Jiayin ZHENG
4
;
Shuyang ZHANG
5
,
6
Author Information
1. Department of Health Policy and Management, School of Public Health, Peking University, Beijing 100191, China.
2. Beijing Institute of Health Economics, Beijing 100053, China.
3. Qinghai Provincial Medical Insurance Management Bureau, Xi′ning 810000, China.
4. China Alliance for Rare Diseases, Beijing 100022, China.
5. Peking Union Medical College, Chinese Academy of Medical Sciences &
6. Peking Union Medical College, Beijing 100730, China.
- Publication Type:Journal Article
- Keywords:
rare diseases;
multiple security system;
healthcare security
- From:
JOURNAL OF RARE DISEASES
2023;2(1):135-142
- CountryChina
- Language:Chinese
-
Abstract:
Health security for rare diseases has aroused much attention in the society nowadays, In this article, we analyzed in-depth the construction of rare diseases health security in China by studying the literature reviews, expert interviews, and reports of pilot policy investigations. We conclude in the study that it is an important step to constructing a multiple health security system for the rare disease making the basic health security as the cornerstone. For rare medications and treatments that cannot be covered by the current national health insurance, it is necessary to build an specific funding for rare disease funding as a means of safeguard. Finally, for those who are financially disadvantages, the system should involve relief and philanthropy to help them. By constructing a multiple health security system, rare diseases patients in our country will get a well-covered health care.
