Multiple sclerosis: it took more than two years to be diagnosed, experts call for attention to rare diseases

　　Multiple sclerosis: it took more than two years to be diagnosed, experts call for attention to rare diseases

　　Xinhua News Agency, Beijing, February 28 (Reporter Lin Miaomiao) The last day of February is International Rare Disease Day.

As one of the rare diseases, multiple sclerosis is a recurrent and disabling autoimmune disease of the central nervous system.

The latest survey shows that the average time from the first onset of the disease to the consultation is more than one year, and the average time from consultation to diagnosis is more than two years.

　　This is the content disclosed in the "Blue Book of Health Insights on Chinese Multiple Sclerosis Patients and the 2021 Quality of Life Report on Chinese Multiple Sclerosis Patients" jointly issued by the China Rare Diseases Alliance and China Medical Care International Exchange Promotion Association on the eve of the International Rare Disease Day.

　　"Clinically, many patients still discontinue treatment during the remission period due to insufficient understanding of the disease and limited financial ability." said Xu Yan, chief physician of the Department of Neurology at Peking Union Medical College Hospital.

The survey showed that a large number of patients did not receive treatment during the remission period. Except for relapsed hospitalized patients, less than half of the patients were followed up regularly, which laid hidden dangers for the recurrence and disability of the disease.

　　Further standardization of diagnosis and treatment requires the joint efforts of doctors and patients.

Cui Liying, director of the Department of Neurology at Peking Union Medical College Hospital, believes that multiple sclerosis is prone to relapse.

If patients can be diagnosed and treated early, and treated with standardized disease correction during the remission period of the disease, the incidence of disability will be reduced and the patient will have a better prognosis.

　　At present, two innovative drugs for the treatment of multiple sclerosis have been included in the national medical insurance catalogue.

Nevertheless, the burden of disease on patients is still heavy.

The survey shows that in addition to hospitalization expenses, 44.7% of patients spend an average of more than 9,000 yuan in other medical expenses per month.

　　Experts such as Xu Yan called for more companies to participate in the research and development of rare diseases, to provide patients with rare diseases with more choices; to further improve the availability of drugs through medical insurance negotiations and other methods.