This was heard at yesterday’s scientific seminar on strengthening rare disease management in Vietnam organized by the Ministry of Health and the Vietnam General Medical Association.
Deputy Minister of Health Tran Van Thuan said that in the world there are currently about 300 million people living with 6,000 rare diseases.
Of these rare diseases, the genetic cause is known to be the culprit of up to 80 percent of rare diseases. Rare diseases are a big challenge for medicine in diagnosis and treatment. Only 5 percent of rare diseases have treatments approved by the US Food and Drug Administration.
Currently, about 100 rare diseases have been reported in Vietnam and 6 million people are suffering from rare diseases including up to 58 percent of rare diseases in children. Worse, 30 percent of children with rare diseases die before the age of 5. At the same time, people with rare diseases are facing difficulties in accessing rare disease therapy.
Although there are advanced drugs for a few rare diseases in the world that help treat the genetic cause of the disease, they are not currently approved for use in the country. Some drugs are available but patients can’t access the medicines because their disease is not covered by insurance.
According to leaders of the Ministry of Health, to solve the problem of rare diseases and improve the effectiveness of rare disease treatment, it is necessary to have the participation of the entire machinery of the political and social system because it needs large financial resources.
At the seminar, a memorandum of cooperation was signed between the Department of Medical Service Administration, the Ministry of Health and partners to improve the quality of rare disease management and treatment in Vietnam.
