Fairness and Improvements of the Security Mechanism for Rare Diseases Drugs

Ensuring access to essential rare disease treatments necessary for survival and basic health, even when costs are high, does not violate ethical or legal principles of fairness. The veil of ignorance theory can support the fairness of high-cost insurance. China's current system for ensuring access to rare disease medications still faces several challenges: many rare disease drugs have yet to be included in the national health insurance drug directory; commercial insurance imposes multiple restrictions on rare disease coverage; and government medical assistance and charitable aid are limited by funding constraints and issues of fairness. It is recommended to: continue expanding the national health insurance drug directory to include more rare disease medications; establish provincial-level special funds for rare disease coverage; conditionally mandate rare disease coverage by commercial and reinsurance companies. Learning from Singapore's experience, a public-private partnership rare disease relief fund can be established to integrate medical assistance and charitable assistance.