论平等权视域下罕见病药品可及性的制度困境

Systematic dilemmas of accessibility of orphan drugs within the sight of equal rights

文章从形式平等与实质平等两个维度出发,对我国罕见病药品可及性问题进行探析。目前罕见病药品可及性主要存在以下制度困境:一是医疗保障制度缺陷影响罕见病药品合理负担;二是罕见病药品保障制度缺失影响药品足量供应;三是罕见病医药卫生信息机制缺乏影响药品正常流通。因此,需要通过实现形式平等与实质平等在制度正义上的相对统一,以提高罕见病药品的可及性。

From the dimensions of formal equality and substantive equality, this article makes an exploration on the accessibility of orphan drugs. Currently, there are the following systematic dilemmas affecting the orphan drugs＇ accessibility： first, some defects in the designing of medical security system have a negative influence on the affordability of orphan drugs; second, deficiency in the security system of orphan drugs has an adverse effect on the sufficient supply; third, the lack of orphan drug information system is unfavorable to the negotiability of the drugs. The accessibility of orphan drugs can be improved through realizing the comparative unification of formal equality and substantive equality in terms of institutional justice.