The Chinese government is set to publish its first comprehensive list of rare diseases, with the aim to help policymakers improve diagnoses and speed up drug approvals.
This comes on the heels of China overhauling its healthcare system: It expanded its national reimbursable drug list this year for the first time in 7 years and it has laid the groundwork to speed up orphan drug approvals.
According to Peter Fang, the head of Asia Pacific for a leading pharma company, Shire:
“China, with the largest population in the world, should also have the largest population of rare diseases.”
In fact, there are an estimated 16 million Chinese citizens with rare diseases. But in China’s current healthcare system, rare diseases have been largely ignored, therefore drugs to treat these rare diseases are often prohibitively expensive or just not available.
But with this pending rare disease list, the hope is to change that, in the way that the Orphan Drug Act of 1983 changed the prospects of rare diseases in the United States. This list can offer a basis for healthcare policy and spur on a conversation about the better diagnostics, care, and financial support.
And this list could not come soon enough. According to Li Dingguo, chairman of the Shanghai Rare Disease Prevention and Treatment Fund:
“Here in China, the state has good intentions but there is no detailed regulation, no preferential policies and no tax breaks [for orphan drugs). Because China lacks these medical safeguards, we see lots of patients with rare diseases just waiting to die.”
Read the Reuters article here.
