ArticlePloS one2018
Disease and economic burden for rare diseases in Taiwan: A longitudinal study using Taiwan's National Health Insurance Research Database.
Article in PloS one, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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Who cites it
21 citing papers in PubMed, 41 citations in OpenAlex.
- Aging and rare diseases: from epidemiology to a call to action.European geriatric medicine · 2026Article
- A study on the accessibility and utilisation of targeted drugs for pulmonary arterial hypertension in China.Frontiers in pharmacology · 2026Article
- A retrospective study of insurance coverage status and economic cost of rare diseases in Hainan Province.Scientific reports · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Epidemiology and Burden of Illness of Lennox-Gastaut Syndrome in Taiwan: A Retrospective Cohort Study.Risk management and healthcare policy · 2025Article
- The role of public health in rare diseases: hemophilia as an example.Frontiers in public health · 2025Review
- Burden of rare genetic disorders in India: twenty-two years' experience of a tertiary centre.Orphanet journal of rare diseases · 2024Article
- Analysis of affordability differences for rare diseases in China: a comparison across disease types and regions.International journal for equity in health · 2024Article
- Current situation and prospect for the diagnosis and treatment of pediatric critical rare diseases in China.Pediatric investigation · 2024Review
- Frequency-based rare diagnoses as a novel and accessible approach for studying rare diseases in large datasets: a cross-sectional study.BMC medical research methodology · 2023Article
- Survival and Its Correlates in Multiple Sclerosis Patients under a Universal Health Insurance Program in Taiwan: An 18-Year Nationwide Cohort Study.Healthcare (Basel, Switzerland) · 2023Article
- Enhancing Equitable Access to Rare Disease Diagnosis and Treatment around the World: A Review of Evidence, Policies, and Challenges.International journal of environmental research and public health · 2023Review
- Perspectives and evaluation on the effect of financial burden relief of medical insurance for people with catastrophic diseases and its influencing factors.Frontiers in public health · 2023Article
- 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
- The impact of the rare disease and Orphan Drug Act in Taiwan.Journal of food and drug analysis · 2021Article
- Economic burden and health related quality of life of ultra-rare Gaucher disease in China.Orphanet journal of rare diseases · 2021Article
- Cost-of-illness studies in rare diseases: a scoping review.Orphanet journal of rare diseases · 2021Article
- Editorial: Big Data, Pharmacogenomics and Real-World Research in Pharmacology.Frontiers in pharmacology · 2020Article
- Public spending on orphan medicines: a review of the literature.Journal of pharmaceutical policy and practice · 2020Article
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Authors and funding
6 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHigh-cost orphan drugs are becoming increasingly available to treat rare diseases that affect a relatively small population. Little attention has been given to the prevalence of rare diseases and their health-related economic burden in Taiwan.
objectivesThis study examined the national trends in the prevalence of rare diseases and their health-related economic burden (including medication costs) in Taiwan.
methodsRare disease-related claims data from 2003-2014 (12 years) from the National Health Insurance Research Database were used in this study. We used a time series analysis to assess trends in the yearly rates of treated patients with rare diseases, overall healthcare use, and expenditures, including drugs.
resultsDuring the 12-year study period, the estimated prevalence of rare diseases increased from 10.57 to 33.21 per 100,000 population, an average rate of a 19.46% increase per year. Total health expenditures for treatment of rare diseases increased from US$18.65 million to US$137.44 million between 2003 and 2014, accounting for 0.68% of the total national health expenditures in 2014. Drug expenditures for treatment of rare diseases increased from US$13.24 million to US$121.98 million between 2003 and 2014, which accounted for 71.00% and 88.75% of the health expenditures for patients with rare diseases in 2003 and 2014, respectively. In 2014, we found a 20.43-fold difference in average health expenditures and a 69.46-fold difference in average drug expenditures between patients with rare diseases and the overall population.
conclusionsThe prevalence of rare diseases and the related economic burden have grown substantially in Taiwan over the past 12 years, and these trends are likely to continue. Drug expenditures accounted for almost 90% of health expenditures for rare diseases. Further analyses are underway to examine the economic burden of individual rare diseases.
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