Rare Disease Patients Will Have to Wait for Affordable Drugs, Experts Say

The inclusion of expensive rare disease drugs in China’s updated medical insurance list does not mean more such treatments will be available to patients soon, as it may take a long time before price negotiations can be done for other rare drugs, health experts say.

In interviews with Caixin, scholars and industry insiders noted that the health authorities have not developed a precise mechanism for including rare disease treatments in government-backed insurance plans. Meanwhile, the current requirement capping the drugs’ prices under 300,000 yuan per patient per year makes it difficult to find a sustainable way of making affordable rare disease drugs available to patients in need.