희귀난치성질환 대책에 대한 소고 : 일본의 난병환자에 대한 의료 등에 관한 법률안을 중심으로 = Concerning on measures for rare incurable or intractable diseases -Based on the Japanese Legislative Bill of Rare Incurable or Intractable Disease patients

다국어 초록 (Multilingual Abstract)

Although around 5,000 kinds of Rare Incurable or Intractable Diseases are listed on World Health Organization, just 134 kinds of them are now listed on Korean Medical Care Act. The covering range of Rare Incurable or Intractable Diseases is also limited in fundholding. There has also been little inducement to encourage researchers to develop medical supplies for Rare Incurable or Intractable Diseases, even though it is indispensable. To improve this, the Legislative Bill of Rare Incurable or Intractable Diseases introduced May 21, 2014, contains systematic management of Target Rare Incurable or Intractable Diseases and Government's Support for researching and developing medical supplies for Rare Incurable or Intractable Disease Patients. However, in comparision with the Japanese Legislative Bill of Rare Incurable or Intractable Disease patients which was introduced 3 months earlier than Korean Bill and affected Korean Bill, actual support for Rare Incurable or Intractable Disease patients in Korean Legislative Bill is not sufficient. According to the Japanese Legislative Bill of Rare Incurable or Intractable Disease patients, Japanese Government is trying to support Rare Incurable or Intractable Disease patients for their public participation and deliver Social Welfare Service to them, allowing them to be social members naturally. In this paper, first, I will discuss about Japanese and Korean Legislative Bill of Rare Incurable or Intractable Disease patients respectively. Then, I'll suggest things that Korean Government should reinforce to support Rare Incurable or Intractable Disease patients in many ways.

목차 (Table of Contents)

• Ⅰ. 들어가며
• Ⅱ. 희귀난치성질환 대책의 현상
• Ⅲ. 일본의 난병환자에 대한 의료 등에 관한 법률안
• Ⅳ. 마치며
• 참고문헌
• [ABSTRACT]