The doctor did not understand the rare disease, thirty percent of those surveyed patients say 65% of those surveyed had been misdiagnosed

& other; Among 2040 patients interviewed, nearly 65% of patients have been misdiagnosed, thirty percent of doctors admit that they do not understand the rare disease. Throughout the &; It is a challenge by sickness foundation and Hong Kong Baptist university, huazhong university of science and technology cooperation survey released “2018 China rare diseases research report” (hereinafter referred to as the “report”).

by the report you can see, on the one hand, many rare diseases patients doctor diagnosed a long and difficult road, burden is heavy; Across the country on the other hand, quite a proportion of the doctor for rare diseases do not yet know, insufficient attention to rare diseases group and patients have a certain gap. This & other; With medical, medical institutions know & throughout; , still exist significantly, become our big challenge to solve the problem of rare diseases.

to participate in the research of the Hong Kong Baptist university teacher, sickness policy challenges foundation research advisory dong dong, found that two-thirds of patients have been misdiagnosed, diagnoses to experience what is the number of confirmed to you? Confirmed that more than half, but more is needed from 1 to 5 years, 6 to 10 years, or even 10 years can be confirmed. There are two the most extreme example, after 42 years in the respectively and she had what disease diagnosed 44 years. And they need to go to many hospitals, hospital diagnosed as less than 25%, more than three-quarters of the people need to experience two, three, four, five, or even more than five hospitals, most of the run more than 20 hospitals, not only go to the hospital, they go to the department is also very much, three-quarters of people need to experience more than two departments can get confirmed, one of the most diagnosed only has experienced more than 20 departments.

in the information developed today, all people think that the Internet can do anything, what information can be found on the Internet, why is it so difficult to diagnose?

& other; Our first thought is the reason why the doctor not so fast to help us find sick reason? We asked a 285 highly educated high title of doctor, 70% from 3 armour hospital, and is a provincial above 3 armour hospital, among them there are one third of the doctors had never seen a case of a rare disease, seen only two-thirds of the doctor. Throughout the &; Dong dong said.

the study doctor groups on the record of formal schooling is much higher than Chinese doctor’s universal education levels, number of years practicing medicine reflects accepts experience more rich, even so, there are still 33.3% of doctors to admit that you just heard of rare diseases, but don’t know; Even 1.1% of the doctors had never heard of the rare disease.

& other; Many doctors don’t know the price of drugs, also don’t know whether the drug is in health care, and patients can be gained through what channels can, he only know have this medicine can cure, but all the other relevant information is not very clear. This leads to nearly 30% of 2040 patients had never done any treatment, and some rare diseases is not without medicine. Throughout the &;

rare diseases is a common medical problem faced by humanity, but also a social problem. It not only affects the quality of people’s life and health and life, also makes the affected individuals and families in health care, education, employment, social integration and social security and so on many aspects encountered many obstacles, even in a life of despair.

the report pointed out that rare patients social security level is low, & have spent 20.4% (417 people) have a town worker is basic endowment insurance, 6.0% (123 people) had the rural social endowment insurance, 8.2% (167 people) have unemployment insurance, 6.3% (129 people) had birth insurance, 2.2% (45) of the respondents have commercial endowment insurance, 9.0% (183 people) had the lowest life guarantee, 6.4% (131 people) have help for the disabled, accept the five guarantees have 10 people, five people enjoy military materials, 1.2% (24) enjoy other social security. However, there are more than half (52.0%) of respondents said there was no any kind of social security and insurance.

& other; We all cases of first-class hospital in Beijing made a comprehensive investigation and study, the hospital 3596 kinds of rare disease were found out. The Beijing municipal government is studying the top ten rare diseases basic security work, the work is underway. Throughout the &; The Chinese medical association, vice chairman jin said.

rare diseases directory is also formulated. , vice President of the Chinese academy of medical sciences, the national health and family planning commission rare diseases diagnosis and treatment with security expert committee, director of the committee Zhang Xue said that at present, the directory is being made in the rare disease.

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