政策网络理论视野下的中国“孤儿药”问题

A Review on China's Orphan Drugs Issue in the Perspective of Policy Networks

用以治疗罕见病患的"孤儿药"在中国遭遇了供给困难和研究匮乏的双重困境。造成困境的根源在于中国"孤儿药"政策网络存在多方面的问题。从现代公共管理的视角和提升政府治理能力的层面看,保障罕见病患者及时获得"孤儿药"的权利,是现代政府的重大责任。新时期中国政府有必要转变治理理念,在实现国家治理体系现代化的背景下,通过重构"孤儿药"政策网络,出台多元化的激励政策,推动各网络行动者积极参与"孤儿药"的供给,以保障罕见病人的正当权益。

Orphan Drugs, designed and produced for the treatment of rare disease patients, have encountered a double predicament in supply and study. The root cause is that many problems exist in China 's orphan drugs policy networks. From the perspective of modern public management and enhancing governance capabilities, it 's a major responsibility for the modern government to protect the rare disease patients ' rights of timely accessing to orphan drugs. In the new era, it is very necessary for the government to change the idea of governance and re-structure the policy networks by carrying out multiple policy excitations to protect the legitimate rights of rare disease patients.