China takes on rare diseases, prioritizing research, drug reimbursement

Less than two years after China first began to prioritize the diagnosis and treatment of rare diseases, the government is ordering hospitals to gather copious data on cases in a bid to promote their diagnosis and treatment. The notification in November 2019 by the National Healthcare Commission (NHC) will require that hospitals register cases they encounter or treat of patients with any of the 121 rare diseases included on China’s first official list of rare conditions, released in May 2018.

In addition, Chinese authorities are considering various ways to use government health insurance to help fund the cost of rare disease drugs. The State Medical Insurance Administration (SMIA) is considering the establishment of a fund of as much as $70,000 per patient to cover rare disease costs.