儿童罕见病治疗必需药品获得权之国家保障及实现路径

The National Guarantee and Realization of the Right to Obtain Necessary Drugs for the Treatment of Children’s Rare Diseases

罕见病患儿应当拥有治疗罕见病的必需药品获得权,国家负有保障儿童罕见病治疗必需药品获得权实现之义务。国家承担保障儿童罕见病治疗必需药品获得权之义务具有其应当性。国家义务是儿童罕见病治疗必需药品获得权实现的根本保障,儿童罕见病治疗必需药品获得权的享有仰赖于国家义务的履行。儿童罕见病治疗必需药品获得权国家义务体系由必需药品获得权的国家尊重义务、国家保护义务和国家给付义务三类义务有机组合构成。为有效保障儿童获得罕见病治疗必需药品的实质权利,国家应层进履行保障儿童罕见病治疗必需药品获得权的尊重义务、保护义务和给付义务。

Children with rare diseases should have the right to receive essential medicines for the treatment of rare diseases,and the state has the obligation to ensure the realization of the right to obtain the necessary drugs for the treatment of rare diseases.It is appropriate for the state to undertake the obligation to guarantee the right to obtain medicines necessary for the treatment of rare diseases in children.The obligation of the state is the fundamental guarantee for the realization of the right to obtain medicines for the treatment of rare diseases in children.The right to obtain medicines necessary for the treatment of children's rare disease depends on the fulfillment of the state's obligations.The national obligation system for the right to obtain essential drugs for the treatment of children's rare diseases is composed of three kinds of obligations:the obligation of national respect,the obligation of national protection and the obligation of national payment.In order to effectively protect the essential rights of children to obtain essential medicines for the treatment of rare diseases,the state should fulfill the obligations of respect,protection and payment to ensure the right of children to obtain medicines necessary for the treatment of rare diseases.