ArticleOrphanet journal of rare diseases2016
Catastrophic expenditure and impoverishment of patients affected by 7 rare diseases in China.
Article in Orphanet journal of rare diseases, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
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Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 31 citations in OpenAlex.
- A systematic review of moral reasons on orphan drug reimbursement.Orphanet journal of rare diseases · 2021Pooled it
- Preference for supplementary voluntary health insurance and heterogeneity in China: a discrete choice experiment.Health policy and planning · 2026Article
- What Drives Public Preference for Rare Drugs Coverage in China? Insights From a Multi-Center Discrete Choice Experiment.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Article
- A study on the accessibility and utilisation of targeted drugs for pulmonary arterial hypertension in China.Frontiers in pharmacology · 2026Article
- Utilization and affordability of health insurance coverage for rare disease drugs in a first-tier city in Northeast China from 2018 to 2021: a study based on the health insurance claims database.International journal for equity in health · 2024Article
- Analysis of affordability differences for rare diseases in China: a comparison across disease types and regions.International journal for equity in health · 2024Article
- Analysis of Incentive Policies and Initiatives on Orphan Drug Development in China: Challenges, Reforms and Implications.Orphanet journal of rare diseases · 2023Article
- A Cross-Sectional Study of Price and Affordability of Drugs for Rare Diseases in Shandong Province, China.International journal of environmental research and public health · 2022Article
- Rare disease curative care expenditure-financing scheme-health provider-beneficiary group analysis: an empirical study in Sichuan Province, China.Orphanet journal of rare diseases · 2022Article
- Rare disease emerging as a global public health priority.Frontiers in public health · 2022Review
- Economic burden and health related quality of life of ultra-rare Gaucher disease in China.Orphanet journal of rare diseases · 2021Article
- Demographics, in-hospital analysis, and prevalence of 33 rare diseases with effective treatment in Shanghai.Orphanet journal of rare diseases · 2021Article
- How Do Patients and Doctors Perceive Medical Services for Rare Diseases Differently in China? Insights from Two National Surveys.International journal of environmental research and public health · 2020Article
- Financial Catastrophism Inherent with Out-of-Pocket Payments in Long Term Care for Households: A Latent Impoverishment.International journal of environmental research and public health · 2020Article
- Catastrophic long-term care expenditure: associated socio-demographic and economic factors.The European journal of health economics : HEPAC : health economics in prevention and care · 2019Article
- Catastrophic financial effect of replacing informal care with formal care: a study based on haematological neoplasms.The European journal of health economics : HEPAC : health economics in prevention and care · 2019Article
- The Tsinghua-Lancet Commission on Healthy Cities in China: unlocking the power of cities for a healthy China.Lancet (London, England) · 2018Review
- Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundChina is actively promoting regulation of rare diseases, rare disease and orphan drugs have been formally incorporated into the national planning. However, few studies have been done to evaluate the affordability of rare disease patients in China. This study aims to provide policy recommendations for the establishment of social security mechanism for rare diseases in China, so as to address the problem of poverty caused by these diseases.
methodsA total of 7 rare diseases were selected by Delphi method. Affordability of treatment for the 7 rare diseases was assessed through annual per capital income, catastrophic expenditure and impoverishment expenditure among urban and rural residents in China.
resultsAssessed through annual per capital income, health expenditure for the 7 rare diseases are all rather high. The highest health expenditure is equivalent to income of 69.34 years of one urban resident, and the burden is heavier for rural residents. Through catastrophic expenditure assessment, proportions of the population experiencing catastrophic expenditure caused by the 7 rare diseases are all under 0.167 ‰. However, once one is ill and taking medications, he will suffer from catastrophic health expenditure. Through impoverishment expenditure assessment, the proportions of impoverishment payment are low among both urban and rural residents, but the 7 rare diseases could lead nearly 4.6 million people into poverty on a national scale.
conclusionThe affordability of treatment for rare disease as well as orphan drugs is rather poor. Residents of different income levels all have difficulties to afford the treatment for rare diseases, so poverty caused by rare diseases is quite widespread. Therefore, social security mechanism for rare disease patients should be established and specific payment pattern for orphan drugs should be set up.
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