China News Service, Changsha, November 18th (Wang Haohao Honglei) "Hunan Province Rare Disease Patients Survival Status and Disease Burden Investigation Report" (hereinafter referred to as "Report") was released in Changsha on the 18th.
"The report took 1 year and was compiled through in-depth interviews with 1,006 rare disease families and more than 10 senior rare disease experts. It is China's first provincial-level regional rare disease research report." CITIC Xiangya Reproductive and Genetic Specialist Said Lu Guangxiu, chief scientist of the hospital and co-founder of Hunan Kode Rare Disease Care Center.
The "Report" shows that only 19% of the respondents can get a clearer diagnosis when they first seek medical attention, 20% have experienced more than 3 referrals, and 34% have experienced misdiagnosis; 55% of the misdiagnosed families suffered from misdiagnosis1 Economic losses of more than 10,000 yuan; about 78% of rare disease patients can be diagnosed in Hunan Province.
“The average annual medical expenditure of the interviewed patients is about 45,994 yuan (RMB), which exceeds their family’s annual income and has reached the threshold of the World Health Organization’s catastrophic medical expenditure. The average annual per capita non-medical expenditure for transportation, accommodation, nutrition, etc., is spent on medical treatment. Reached about 19,185 yuan (RMB).” Lu Guangxiu said that rare diseases also damage patients' bodies and minds. Among the respondents, 32% suffer from one disability, 37% suffer from two or more disability at the same time, and 59% of the patients. Consciously experienced moderate anxiety or depression, 21% consciously experienced extreme anxiety or depression.
The "Report" pointed out that Hunan has already selected 10 hospitals in the first batch of the national rare disease diagnosis and treatment collaboration network. It is one of the provinces that innovatively adopted the "local negotiation model" to include rare disease drugs in critical illness insurance, and plans to further adopt multi-party co-payments. , Mode optimization to reduce patient burden.
Lu Guangxiu said that Hunan should integrate relevant professional resources to formulate a "rare disease containment action plan" as soon as possible, and explore the establishment of rare disease medical security special projects around basic research, clinical diagnosis and treatment, assisted reproductive intervention, genetic blockade, medical security and social assistance. Fund to build a sustainable rare disease diagnosis and treatment service system.
Zhang Zhuohua, vice chairman of the Hunan Provincial Committee of the Chinese People’s Political Consultative Conference and president of Nanhua University, said that the "Report" helps experts understand the basic living conditions of patients with rare diseases in Hunan Province, and design corresponding diagnosis, treatment and assistance models. It will also provide the government and relevant departments with decision-making Scientific basis.
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