罕见病患者权利的缺失与保护

Lack and Protection of Rare Diseases Patients' Rights

罕见病患者是弱势群体中的极弱势者,其生存极其艰难,基本权利难以保障。罕见病患病率虽然很低,但对于罕见病患者及家庭而言,缺医少药的现实使他们举步维艰,在就业和受教育等方面也不能获得公平待遇。中国尚未对罕见病患者权益给予立法保护,因此,以罕见病患者平等权为基础,并在医疗保障中适当有利性差别对待尤为重要。同时,应把构建共同分担机制、攻克主要经济难关作为立足点;在社会生活中,对罕见病患者的人文关怀也不可缺少。

Rare patients are ＂extremely vulnerable people＂ in the vulnerable groups. Their survival is particularly difficult and their basic Hghts are not easy to protect. Although the morbidity rate is very low, for patients with rare diseases and their families, the reality of lacking doc- tors and medicine makes them struggling. Employment, education and other ordinary life also let them into a quagmire. China has not legislated to protect patients with rare diseases on the rights and interests. Therefore, on the basis of equal rights which are about patients with rare diseases, the appropriate and useful treatment in the medical security is particularly important. At the same time, we should regard the structure of a com- mon sharing mechanism and capture of the main economic difficulties as a foothold. Humane care is also essential in social life.