On July 22, Wang Chen, member of the Political Bureau of the CPC Central Committee and Vice Chairman of the Standing Committee of the National People’s Congress, conducted a special survey on legal safeguards in rare disease prevention and treatment in Beijing. He stressed that President Xi Jinping’s Thought on Socialism with Chinese Characteristics for a New Era should be followed as we strive to enhance capacity building for and promote legal safeguards in rare disease prevention and treatment, address people’s urgent demands and concerns, as well as safeguard their health and well-being.

Wang Chen’s survey team organized a symposium to listen to reports from the National Medical Products Administration, the National Health Commission, the Ministry of Science and Technology, the Ministry of Industry and Information Technology and other related departments on the prevention and treatment of rare diseases in accordance with the law, which also allowed them to exchange views with experts at the meeting. In the Center for Drug Evaluation of the National Medical Products Administration, Wang Chen visited the Reception Area, the Chemicals Clinical Department No. 1 and the Biologics Clinical Department to learn about the review process of drugs for rare diseases, among others, and listen to the opinions and suggestions of staff working on the front line.

PUMCH is a leading hospital at the National Rare Disease Diagnosis and Treatment Collaborative Network. Wang Chen’s delegation visited PUMCH’s history museum and special exhibition on rare disease prevention and treatment. The hospital introduced to them how PUMCH runs the service information system for rare disease diagnosis and treatment in China, prepares the guidelines, and establishes a multidisciplinary and “one-stop” model for it. The delegation also met with medical experts and patient representatives of PUMCH. Wang Chen extended his appreciation for specialists working at the front line to relieve the pain and save the lives of thousands of patients with rare diseases, which to him, is a symbol of doctors’ great love and compassion. Wang Chen also visited Shenzhou Cell Engineering Co., Ltd. to learn about the R&D and production of drugs. He encouraged the company to step up its R&D efforts to better meet the needs of patients with rare diseases.

Wang Chen pointed out that since the 18th CPC National Congress, all relevant departments and parties have stepped up their efforts on rare disease research, diagnosis and treatment, and drug supply and improved the healthcare system for rare diseases, which have all yielded good results. Meanwhile, the number of patients with rare diseases, despite its small proportion to the total Chinese population, reaches tens of millions. Many of those patients still face difficulties in diagnosis and treatment as well as treatment unaffordability. Therefore, we should resolutely implement the decision and follow the instruction of the CPC Central Committee, caring for every group in need and making steady progress on the road to a healthy China. We should step up disease prevention in accordance with the law, prevent and control diseases at the source, and reduce the incidence of rare diseases; we should take stock of the current situation, update the catalogue of rare diseases, and improve our ability for disease diagnosis and treatment; we should promote the innovative research and development of drugs for rare diseases, and strive to guarantee the sufficient supply of drugs; we should facilitate the construction of a healthcare system for rare diseases and expand the social security and charity aid for rare diseases, so that more patients with rare diseases can afford medical care and medications and the public can get real benefits. We should properly implement related laws such as “Drug Administration Law” and “Practicing Physicians Law” to overcome shortcomings and weaknesses in disease prevention and treatment. A problem-oriented approach should be taken. Therefore, we should solicit opinions extensively regarding legislation and other issues on rare diseases that experts touched upon during the survey, and with solid evidence from research, provide the legal basis for rare disease prevention and treatment.

Source: Xinhua News Agency

Translator: Liu Haiyan

Editor: Wang Yao