Literature DB >> 23917862

Rare disease patients in China anticipate the sunlight of legislation.

J J Gao1, P P Song, W Tang.   

Abstract

It is estimated that there are over ten million rare disease patients in China currently. Due to a lack of effective drugs and reimbursement regulations for medical expenses the diseases bring most patients enormous physical suffering and psychological despair. Past experience in other countries such as the United States, Japan, and the European Union have shown that legislation is the critical step to improve the miserable situation of rare disease patients. Laws and regulations for rare diseases in these countries prescribe a series of incentives for research and development of orphan drugs which turn out to obviously allow these drugs to flourish. Legislation has also established a drug reimbursement system to reduce the medical burden of the patients. These measures effectively protect the rights and interests of patients with rare diseases. In China, legislation for rare diseases has begun to attract the attention of authorities. It is anticipated that relevant laws and regulations will be established as early as possible to provide safeguards for rare disease patients in China.

Entities:  

Mesh:

Year:  2013        PMID: 23917862

Source DB:  PubMed          Journal:  Drug Discov Ther        ISSN: 1881-7831


  7 in total

Review 1.  Current situation and prospects of newborn screening and treatment for Phenylketonuria in China - compared with the current situation in the United States, UK and Japan.

Authors:  Lin Mei; Peipei Song; Norihiro Kokudo; Lingzhong Xu; Wei Tang
Journal:  Intractable Rare Dis Res       Date:  2013-11

2.  Demographics, in-hospital analysis, and prevalence of 33 rare diseases with effective treatment in Shanghai.

Authors:  Xiaoshu Cai; Georgi Z Genchev; Ping He; Hui Lu; Guangjun Yu
Journal:  Orphanet J Rare Dis       Date:  2021-06-08       Impact factor: 4.123

Review 3.  Challenges in orphan drug development and regulatory policy in China.

Authors:  Alice Cheng; Zhi Xie
Journal:  Orphanet J Rare Dis       Date:  2017-01-18       Impact factor: 4.123

4.  Household financial burden of phenylketonuria and its impact on treatment in China: a cross-sectional study.

Authors:  Lin Wang; Hui Zou; Fang Ye; Kundi Wang; Xiaowen Li; Zhihua Chen; Jie Chen; Bingjuan Han; Weimin Yu; Chun He; Ming Shen
Journal:  J Inherit Metab Dis       Date:  2016-11-10       Impact factor: 4.982

5.  Analysis of economic burden and its associated factors of twenty-three rare diseases in Shanghai.

Authors:  Xiaoshu Cai; Hui Yang; Georgi Z Genchev; Hui Lu; Guangjun Yu
Journal:  Orphanet J Rare Dis       Date:  2019-10-22       Impact factor: 4.123

6.  Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.

Authors:  Xiao-Xiong Xin; Xiao-Dong Guan; Lu-Wen Shi
Journal:  Orphanet J Rare Dis       Date:  2016-06-06       Impact factor: 4.123

7.  Access to Orphan Drugs is a Challenge for Sustainable Management of Cystinosis in China.

Authors:  Xiao-Qiao Li; Xiao-Xia Peng; Chun-Xiu Gong
Journal:  Chin Med J (Engl)       Date:  2018-10-05       Impact factor: 2.628

  7 in total

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