The Reality and Recommendations for The Reimbursement Policy of Rare Diseases in the National Health Insurance Program

• Main Authors: Sung,Chun-Yi, 宋純儀
• Other Authors: 陳鋕雄
• Format: Others
• Language: zh-TW
• Published: 2017
• Online Access: http://ndltd.ncl.edu.tw/handle/dtyx89

碩士 === 國立交通大學 === 科技法律研究所 === 105 === Whether drugs are recognized as a rare disease medication, and whether health insurances reimburses the drugs, often depend on the mechanisms of scientific and medical expert review meetings. The policymaking for rare diseases is often based on insufficient evidence such as small number of small trials, incomplete data, unclear efficacy, and chronic degeneration process, etc. If we do not pay attention to the minority of disease groups and only make judgments by single factors, the decisions might violate the human rights of the minor disease groups. This article intends to protect the right to health insurance from the collection of relevant international laws , the British and Indian court judgments, the interpretation of the Judge of the Court of Justice, and the opinions of the scholars. Medicinal insurance reimbursement is a complex political issue involving a range of medical technology, scientific evidence, costs and other factors. The lack of a single and universally accepted health gain threshold is a major obstacle to the current assessment and the allocation of health resources. We hope the Taiwan's health insurance system will change to set a clear threshold based on a cost-benefit analysis approach, that is, the decision-makers will gradually achieve a consensus on the acceptable range for the yearly expense by a person or a healthy person (QALY). The views of new drugs reimbursement policy from some Japanese scholars are referential for Taiwan to make a better healthcare system which can balance the use of limited public health resources and the sufficient access to drugs for rare disease patients. One of the main ideas of the second-generation NHI is to expand the social diversity participation policy into the NHI. How to make the policies of NHI more in line with the principles of democracy is the primary concern. This research will analynize the impact of before-and-after implementation of health insurance policies in United Kingdom’s NICE, Canada’s CADTH, especially in the aspects that involving patient’s participation. In hope that it can improve patients and patient’s relatives’ experience by substantially involving them in the decision-making process, as such, patients can exercise the most of their basic human rights. This research also adopts a qualitative research method through intensive interviews with relevant institutions and staffs to understand the current situations in reimbursing rare disease drugs, and proposes suitable reformative recommendations. We hope that by combining academic theory and practice, the outcome of this research will provide significant contribution into our country’s healthcare system policy.