In an interview on the sidelines of the 2024 China Rare Disease Conference, a reporter learned that significant strides have been made in rare disease research, treatment services, and medication access in China over the past few years. As of now, more than 80 rare disease medications have been included in the national health insurance drug list.
Globally, there are over 10,000 rare diseases, yet less than 5% of them have targeted treatment options. In China alone, there are approximately 20 million patients with rare diseases. Recently, relevant departments in the country have introduced a series of supportive policies aimed at enhancing the diagnostic and treatment frameworks for rare diseases, as well as improving drug development and accessibility.
Li Linkang, Executive Director of the China Rare Diseases Alliance, stated, “For instance, the National Health Commission has implemented several measures for the diagnosis and treatment of rare diseases. This includes releasing the second batch of rare disease listings and expanding the network of hospitals collaborating on rare disease treatment. Moreover, the Drug Administration has established green channels for drug approval, and the National Healthcare Security Administration is progressively adding rare disease medications to the reimbursement list each year.”
From January to August this year alone, 37 rare disease medications have been approved for market launch, including several new drugs or indications that achieved global first approvals in China. In 2023, the national health insurance drug list saw the addition of 15 rare disease medications, covering 16 distinct disease types and filling the medication gaps for 10 diseases. Preliminary statistics indicate that through negotiated price reductions and reimbursement, the average financial burden has been reduced by 5,500 yuan per rare disease patient.
In recent years, the National Health Commission, in collaboration with multiple departments, has released two batches of rare disease lists, which now encompass 207 disease types. Additionally, the nationwide collaboration network for rare disease treatment has expanded the number of participating hospitals from 324 to 419.
Zhang Shuyang, Dean of Peking Union Medical College Hospital and Vice President of the China Rare Diseases Alliance, explained, “We have organized a multi-disciplinary consultation platform that brings together experts from various fields to provide the most accurate diagnosis and treatment for rare disease patients and their families. In the past, the average time to diagnose a rare disease was around four years; now, patients coming to our hospitals can expect a diagnosis within four weeks.”
