CCTV News
The reporter learned from the 2024 China Conference on Rare Diseases held yesterday (19th) that in recent years, the mainland has strengthened rare disease research, diagnosis and treatment services and drug guarantees, and so far, more than 80 drugs for rare diseases have been included in the national medical insurance drug list.
There are more than 10,000 rare diseases in the world, and at present, less than 5% of rare diseases have targeted treatment options. There are more than 20 million patients with rare diseases in the mainland. In recent years, relevant national departments have continued to introduce a series of supporting policies at the level of rare disease diagnosis and treatment system, drug research and development, and security.
Li Linkang, Executive Director of the China Alliance for Rare Diseases: For example, the National Health Commission has taken a series of measures in the diagnosis and treatment of rare diseases, including the publication of the second batch of (rare diseases) catalog, including the expansion of hospitals in the national rare disease diagnosis and treatment cooperation network, for example, the Food and Drug Administration has some green channels for drug approval, and the National Health Insurance Administration is gradually opening up the list of rare disease drugs into the medical insurance reimbursement every year.
From January to August this year, 37 drugs for rare diseases have been approved for marketing this year, many of which are new overseas drugs or new indications approved for the first time in China. In 2023, 15 new drugs for rare diseases will be added to the National Medical Insurance Catalogue, covering 16 rare diseases, filling the gap in drug protection for 10 diseases. At present, more than 80 drugs for rare diseases have been included in the list of drugs used by medical insurance. According to preliminary statistics, through negotiation of price reduction and expense reimbursement, the burden of rare disease patients will be reduced by an average of 5,500 yuan per person.
In recent years, the National Health Commission (NHC) has jointly released two batches of rare disease catalogues, which have included 207 rare diseases. A national network for the diagnosis and treatment of rare diseases has been established, and the total number of hospitals has increased from 324 to 419.
Zhang Shuyang, President of Peking Union Medical College Hospital and Vice Chairman of China Alliance for Rare Diseases: We have organized a multidisciplinary consultation platform to allow multidisciplinary experts across the country to provide the most accurate diagnosis and treatment for a patient or a family with rare diseases. In the past, it took an average of 4 years to diagnose patients with rare diseases, but now we diagnose patients with rare diseases within 4 weeks when they come to the hospital.