( People's Daily Health Client Li Zhaoyi Guyuwei ) "There are currently more than 10,000 types of rare diseases, and the number of patients has reached 400 million." On October 29, the "2022 China Rare Disease Conference" hosted by China Rare Disease Alliance and China Medical Innovation Promotion Association was held in Beijing. The conference was themed "Life First, Share Health". Practitioners and patients with rare diseases from the national health administrative departments, , medical institutions, and pharmaceutical companies attended the conference, and jointly discussed how to build a "Chinese solution" for diagnosis, treatment and protection of rare diseases.
re-diagnosis and treatment are required to prevent: At present, the number of prenatal screening institutions in my country has reached more than 4,800
Deputy Director of the National Health Commission Yu Xuejun
"At present, 323 hospitals across the country have established a rare disease diagnosis and treatment cooperation network, established a two-way referral , remote consultation mechanism, launched a rare disease diagnosis and treatment service information system, and issued a Chinese rare disease diagnosis and treatment guide." Yu Xuejun, deputy director of the National Health Commission, said, "In the case that more than 90% of rare diseases cannot be solved, prevent it. It is the most economical and effective health strategy. "
Song Li, Director of the Maternal and Child Health Department of the National Health Commission,
"There are many types of birth defects, with more than 8,000 diseases in total, of which a considerable proportion are rare diseases and have extremely low incidence rates." Song Li, Director of the Maternal and Child Health Department of the National Health Commission, mentioned at the main forum that according to the latest statistics this year, the number of prenatal screening institutions in my country has reached more than 4,800, and prenatal diagnosis institutions have reached 498. Neonatal genetic metabolic disease screening institutions have been popularized in many provinces and cities. She further pointed out that we must keep a close eye from the source, adhere to the three-level prevention strategy, improve a series of prevention and control measures from premarital health care to pre-pregnancy protection, to newborn health care, effectively reduce the risk factors for rare diseases, and achieve early detection, early intervention, and early treatment.
is good at innovation and seeking breakthroughs: It is recommended to extend the data protection time for rare disease drugs to ten years
Deputy Director of the State Drug Administration Huang Guo
Deputy Director of the State Drug Administration Huang Guo said that since 2018, my country has approved a total of 56 rare disease drugs to be on the market. In the future, we need to continue to promote the research and development and innovation of rare disease drugs, encourage foreign innovative drugs to be developed simultaneously, clinically and applied in China, and strive to be launched simultaneously, so that patients with rare diseases in my country can use medicines faster and better medicines.
Bi Jingquan, deputy director of the Economic Committee of the National Committee of the Chinese People's Political Consultative Conference and executive vice chairman of the China International Economic Exchange Center, encourages the research and development of drugs for rare diseases, and special policies that conform to the laws of rare diseases need to be studied and formulated. Bi Jingquan, deputy director of the Economic Committee of the National Committee of the Chinese People's Political Consultative Conference and executive vice chairman of the China International Economic Exchange Center, suggested that, first, we must stabilize the market expectations for enterprises to develop drugs for rare diseases. The patent system and the data protection system both belong to the category of intellectual property protection . In essence, it is a reward for the exclusive market for innovators, including independent pricing. For products such as innovative drugs that are fully competitive in the market, government price controls are not appropriate. Second, we must extend the exclusive time of the rare disease drug market. Currently, the data protection time for drugs containing new chemical components is six years. It is recommended to refer to the practices of Japanese and EU to extend the data protection time for drugs for rare diseases to ten years.
strong protection and wide coverage: 19 new rare diseases drugs are added to the catalog, with an average price reduction of 52.6%
Huang Huabo, Director of the Medical Management Department of the National Medical Insurance Bureau,
In order to solve the problem of the high price of rare diseases, Huang Huabo, Director of the Medical Management Department of the National Medical Insurance Bureau, mentioned that in recent years, the country has promoted the optimization of the medical insurance drug catalog adjustment procedure. At present, 45 rare diseases drugs have been included in the medical insurance drug catalog, covering 26 rare diseases. Since 2018, 19 new rare diseases drugs have been added to the catalog, with an average price reduction of 52.6%. In addition, by improving the negotiated drug equipment mechanism and the "dual channel" policy, drugs for rare diseases will be tilted. As of the end of September 2022, a total of 4,695 designated medical institutions nationwide have been equipped with drugs for rare diseases during the agreement period.
"We continue to reduce the drug prices for rare diseases through medical insurance negotiations. From 2019 to 2021, comprehensive negotiations on price reduction and medical insurance reimbursement will reduce the personal burden of patients with rare diseases by 92.8% compared with the price before the negotiations." Huang Huabo said that the National Health Insurance Administration also guided local governments to include some rare diseases with long treatment cycles and high medical expenses in the outpatient special disease protection scope.
Member of the Economic Committee of the National Committee of the Chinese People's Political Consultative Conference and former deputy secretary of the Party Committee and vice chairman of the China Insurance Regulatory Commission, mentioned at the opening ceremony that after nearly ten years of development, the implementation of the serious illness insurance system has effectively alleviated the problem of urban and rural residents returning to poverty due to illness. Zhou Yanli, member of the Economic Committee of the National Committee of the Chinese People's Political Consultative Conference and former deputy secretary of the Party Committee and vice chairman of the China Insurance Regulatory Commission, said that the cumulative compensation for rare and serious illness insurance is more than 55 million people, with the maximum reimbursement amount exceeding 1 million, reaching 1.116 million yuan.
It is understood that at the opening ceremony, the China Rare Disease Alliance, together with domestic and foreign industry associations and enterprises, jointly issued the initiative "Support the weak, care for patients with rare diseases, put the people first, and realize co-construction and sharing." In addition to the opening ceremony and main forum, the conference also has a peak discussion, closed-door meeting, sub-forum, special meeting, the National Rare Disease Quality Control Center's 2022 Annual Quality Control Work Conference, the National Rare Disease Diagnosis and Treatment Collaborative Network Online Training and a Single Disease MDT Online Disease MDT Online Discussion, which will showcase cutting-edge hot spots and scientific and technological innovations in the field of rare diseases in China from multiple angles such as research, clinical, and security.
