lunes, 29 de febrero de 2016

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Orphanet Journal of Rare Diseases | Full text | The availability and affordability of orphan drugs for rare diseases in China
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The following new article has just been published in Orphanet Journal of Rare Diseases


Research  
Gong S, Wang Y, Pan X, Zhang L, Huang R, Chen X, Hu J, Xu Y, Jin S
Orphanet Journal of Rare Diseases 2016, 11 :20 (27 February 2016)

Research

The availability and affordability of orphan drugs for rare diseases in China

Shiwei Gong1*Yingxiao Wang1Xiaoyun Pan2Liang Zhang3Rui Huang1Xin Chen1,Juanjuan Hu1Yi Xu1 and Si Jin4
1Department of Pharmacy Business and Administration, School of Pharmacy, Tongji Medical College of Huazhong University of Science and Technology, Wuhan 430030, Hubei, China
2Department of Pharmaceutical Systems and Policy, School of Pharmacy, West Virginia University, Morgantown, WV, USA
3School of Health and Medicine Management, Tongji Medical College of Huazhong University of Science and Technology, Wuhan, Hubei, China
4Department of Endocrinology, Institute of Geriatric medicine, Liyuan Hospital, Tongji Medical College of Huazhong University of Science and Technology, Wuhan, Hubei, China
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Orphanet Journal of Rare Diseases 2016, 11:20  doi:10.1186/s13023-016-0392-4
The electronic version of this article is the complete one and can be found online at:http://www.ojrd.com/content/11/1/20

Received:9 October 2015
Accepted:19 January 2016
Published:27 February 2016
© 2016 Gong et al. 
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Abstract

Background

Orphan drugs are intended to treat, prevent or diagnose rare diseases. In recent years, China healthcare policy makers and patients have become increasingly concerned about orphan drug issues. However, very few studies have assessed the availability and affordability of orphan drugs for rare diseases in China. The aim of this study was to provide an overview of the availability and affordability of orphan drugs in China and to make suggestions to improve patient access to orphan drugs.

Methods

Two components of the availability of orphan drugs were examined. Market availability was assessed by the extent to which orphan drugs were marketed in China with a comparison to orphan drugs in international markets, such as the U.S., EU and Japan. We conducted surveys and collected data from 24 tertiary public hospitals in China to measure hospital-level availability of orphan drugs. The affordability of orphan drugs was calculated using hospital dispensary prices and was expressed as days of average daily income required for the cost of a course of treatment. Affordability was also analyzed under the Chinese basic medical insurance system.

Results

Orphan drugs approved in the U.S., EU and Japan had 37.8 %, 24.6 % and 52.4 % market availability in China, respectively. Median availability of 31 orphan drugs surveyed at the 24 tertiary public hospitals was 20.8 % (very low). Within a periodic treatment course, the average treatment cost of 23 orphan drugs is approximately 4, 843. 5 USD, which equates to 505.6 days of per capita net income for an urban resident with a middle income (187.4 days for a high-income urban resident) or 1,582.8 days’s income for a rural resident with a middle income (657.2 days for a high-income rural resident). Except for homoharringtonine, 22 orphan drugs for 14 rare diseases were unaffordable for the most of residents in China. With 5 % out-of-pocket expenses, only three generics could be afforded by middle-income residents, whereas seven drugs for high-income urban residents.

Conclusions

The Chinese government can take more responsibility for improving the availability and affordability of orphan drugs through setting up incentive policies and public platforms for sharing of orphan drug information. Control of the high price of orphan drugs, combined with a joint funding model from both government and private enterprise can efficiently reduce the economic burden of affected patients in China.
Keywords: 
Rare disease; Orphan drug; Availability; Price; Affordability; China

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