Current Status and Discussion of Hemophilia Aid System

CHENG Yan; FANG Yunhai; ZHANG Xinsheng

doi:10.12376/j.issn.2097-0501.2022.04.003

Journal of Rare Diseases > 2022 > 1(4): 375-379. > DOI: 10.12376/j.issn.2097-0501.2022.04.003

CHENG Yan, FANG Yunhai, ZHANG Xinsheng. Current Status and Discussion of Hemophilia Aid System[J]. Journal of Rare Diseases, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003

Citation:

CHENG Yan, FANG Yunhai, ZHANG Xinsheng. Current Status and Discussion of Hemophilia Aid System[J]. Journal of Rare Diseases, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003

Citation:

CHENG Yan, FANG Yunhai, ZHANG Xinsheng. Current Status and Discussion of Hemophilia Aid System[J]. Journal of Rare Diseases, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003

PDF (1056 KB)

Current Status and Discussion of Hemophilia Aid System

Blood Center of Shandong Province, Shandong Province Hemophilia Treatment Center, Jinan 250014, China

Funds:

Shandong Province Technology Development Project of Medical and Health Science 202103040601

More Information

Corresponding author:
ZHANG Xinsheng, E-mail: 18615536080@163.com
Received Date: August 11, 2022
Accepted Date: August 23, 2022
Available Online: December 22, 2022

Graphical Abstract

Abstract

Abstract

Hemophilia is a hereditary bleeding disorder where the only effective treatment is factor replacement therapy. The main contradiction of hemophilia in China is the contradiction between the increasing demand for quality of life of hemophilia patients and insufficient medical insurance, medical treatment and medicine. Expensive treatment costs are the main reason for patients to "be impoverished due to illness" and "return to poverty due to illness". This article analyzes the current status of the hemophilia aid system through the existing literature data and existing patient aid projects. Cooperation of social insurance, social relief and high-quality medical services is critical to a complete hemophilia comprehensive medical aid system, so that hemophilia patients can receive standardized diagnosis and treatment, and try to achieve the close quality of life as normal.
- hemophilia,
- medical aid,
- health poverty alleviation,
- quality of life

FullText(HTML)

References (11)

References

[1]	中华医学会血液学分会血栓与止血学组. 血友病诊断与治疗中国专家共识(2017版)[J]. 中华血液学杂志, 2017, 38: 364-370. doi: 10.3760/cma.j.issn.0253-2727.2017.05.002
[2]	吴润晖. 中国儿童血友病专家指导意见(2017年)[J]. 中国实用儿科杂志, 2017, 32: 1-5. https://www.cnki.com.cn/Article/CJFDTOTAL-ZSEK201701001.htm
[3]	曲艳吉, 殷环, 庞元捷, 等. 中国大陆血友病患者治疗现状和经济负担的系统评价[J]. 中国循证医学杂志, 2013, 13: 182-189. https://www.cnki.com.cn/Article/CJFDTOTAL-ZZXZ201302012.htm
[4]	World Federation of Hemophilia. Report on the WFH annual global survey 2020[EB/OL ]. (2021-10)[2022-08-12]. https://www1.wfh.org/publications/files/pdf-2045.pdf.
[5]	国家卫生健康委, 民政部, 国务院扶贫办, 等. 关于进一步加强农村贫困人口大病专项救治工作的通知(国卫办医函〔2018〕830号)[EB/OL]. (2018-09-30)[2022-08-12]. http://www.nhc.gov.cn/yzygj/s7659/201809/7f2a8afdf3524fb1812e9555b17921db.shtml.
[6]	国务院办公厅. 关于健全重特大疾病医疗保险和救助制度的意见(国办发〔2021〕42号)[EB/OL ]. (2021-11-19)[2022-08-12]. http://www.news.cn/politics/2021-11/19/c_1128079665.htm.
[7]	山东省人民政府办公厅. 关于进一步完善医疗救助制度全面开展重特大疾病医疗救助工作的实施意见的通知[EB/OL ]. (2015-12-04)[2022-08-12]. http://www.shandong.gov.cn/art/2015/12/4/art_2267_18721.html.
[8]	国家卫生健康委, 发展改革委, 财政部, 等. 关于印发健康扶贫三年攻坚行动实施方案的通知(国卫财务发〔2018〕38号)[EB/OL ]. (2018-10-17)[2022-08-12]. http://www.gov.cn/zhengce/zhengceku/2018-12/31/content_5436892.htm.
[9]	山东省卫生健康委员会, 山东省民政厅, 山东省扶贫开发领导小组办公室, 等. 关于转发国卫办医函〔2019〕427号文件进一步做好农村贫困人口大病专项救治等健康扶贫工作的通知[EB/OL ]. (2019-07-03)[2022-08-12]. https://www.doc88.com/p-89529017018248.html.
[10]	卫生部办公厅. 卫生部办公厅关于做好血友病医疗服务工作的通知(卫办医政函〔2012〕1101号)[EB/OL ]. (2012-12-14)[2022-08-12]. http://www.gov.cn/gzdt/2012-12/14/content_2290843.html.
[11]	杨仁池. 中国血友病管理指南(2021年版)[M]. 北京: 中国协和医科大学出版社, 2021.

[1]	ZHANG Xueyi, SUN Bo, CHEN Guilin, HU Ge, LI Qing, QIU Guixing. Computer Vision in Medical Imaging and its Impact on the Rare Musculoskeletal Diseases[J]. Journal of Rare Diseases, 2023, 2(4): 589-595. DOI: 10.12376/j.issn.2097-0501.2023.04.014
[2]	FENG Junchao, LI Shunping, CHEN Jingdan, XIE Shiyao, ZHANG Yue, JIANG Shijing. Current Status of Studies Measuring Health State Utility for 121 Rare Diseases[J]. Journal of Rare Diseases, 2023, 2(3): 455-462. DOI: 10.12376/j.issn.2097-0501.2023.03.019
[3]	TAO Libo, WANG Fangxu, JIA Fanghong, YANG Yulin, ZHENG Jiayin, ZHANG Shuyang. The Exploration and Analysis of Constructing a Multiple Health Security System for Rare Diseases in China[J]. Journal of Rare Diseases, 2023, 2(1): 135-142. DOI: 10.12376/j.issn.2097-0501.2023.01.019
[4]	YE Changxiong, SUN Jing. Development and Utilization of "One-Stop Finance Service" forRelief Fund for Hemophilia Patients[J]. Journal of Rare Diseases, 2022, 1(4): 474-478. DOI: 10.12376/j.issn.2097-0501.2022.04.019
[5]	LI Shunping, DOU Lei, FANG Yunhai. Current Situation and Prospect of Pharmacoeconomic Evaluation of Hemophilia in China[J]. Journal of Rare Diseases, 2022, 1(4): 468-473. DOI: 10.12376/j.issn.2097-0501.2022.04.018
[6]	DAI Xinyue, ZHANG Lei. Status and Prospect of Gene Therapy for Hemophilia[J]. Journal of Rare Diseases, 2022, 1(4): 386-390. DOI: 10.12376/j.issn.2097-0501.2022.04.005
[7]	YAO Wanru, ZHANG Jishui, WU Runhui. Development and Application of Comprehensive Evaluation System in the Treatment of Children with Hemophilia in China[J]. Journal of Rare Diseases, 2022, 1(4): 380-385. DOI: 10.12376/j.issn.2097-0501.2022.04.004
[8]	XUE Feng, YANG Renchi. Establishment and Evolution of China National Hemophilia Registry[J]. Journal of Rare Diseases, 2022, 1(4): 370-374. DOI: 10.12376/j.issn.2097-0501.2022.04.002
[9]	YANG Renchi. Establishment of Care System for Hemophilia in China: Current Status and Future Prospect[J]. Journal of Rare Diseases, 2022, 1(4): 365-369. DOI: 10.12376/j.issn.2097-0501.2022.04.001
[10]	ZHANG Haiqin, LI Shunping, FENG Junchao. Application Status, Problems and Suggestions of Commerical Health Insurance in Medical Security for Rare Dsieases in China[J]. Journal of Rare Diseases, 2022, 1(1): 84-88. DOI: 10.12376/j.issn.2097-0501.2022.01.014

Cited By

Cited by

Periodical cited type(2)

1.	向堃，高静. 延续护理对血友病患者自我效能的影响. 现代养生. 2024(21): 1664-1667 .
2.	彭美华，田新，邓靖，朱旭林，廖芳，李希. 罕见病患者医药服务利用及保障状况比较研究——以未成年血友病患者为例. 中国农村卫生事业管理. 2023(11): 778-784 .

Other cited types(2)

Get Citation

PDF

XML

Article views (216) PDF downloads (70) Cited by(4)

Turn off MathJax

Article Contents

Abstract

References

Current Status and Discussion of Hemophilia Aid System