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"Intractable Disease" is not a specifically or clearly defined medical term but has been used to indicate a "challenging" or "incurable" disease in Japan.
Therefore, what "Intractable Disease" indicates depends on the medical standard and social context of the times.
For example, tuberculosis used to be called an "intractable disease" when it was epidemic and highly fatal once a person gets affected.
Nowadays, its fatality is greatly lowered and it has become curable after the Tuberculosis Prevention Act. It is no longer called "intractable".
Therefore, what "Intractable Disease" indicates depends on the medical standard and social context of the times.
For example, tuberculosis used to be called an "intractable disease" when it was epidemic and highly fatal once a person gets affected.
Nowadays, its fatality is greatly lowered and it has become curable after the Tuberculosis Prevention Act. It is no longer called "intractable".
The Ministry of Health, Labour and Welfare defines intractable disease as:
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diseases that have resulted from an unidentifiable cause and, without a clearly established treatment, have a considerably high risk of disability, and
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diseases that chronically develop and require a significant amount of labor for the patient's care, causing a heavy burden on other family members of the patient, both financially and mentally.
When a disease fits into both definitions of "intractable" and "rare", it is called a "Rare Disease".
The definition of "Rareness" differs from region to region.
The definition of "Rareness" differs from region to region.
| Definition of Rareness in Japan, United States and Europe | ||
|---|---|---|
| Definition | per 10,000 persons | |
| Japan | less than 50,000 persons in Japan | less than 5 persons |
| United States | less than 200,000 persons in United States | less than 7.5 persons |
| Europe | less than 5 in 10,000 persons | less than 5 persons |
There are thousands of rare diseases that each affects very small population and their real pictures are not yet grasped.
The estimated number of such diseases is said to be more than 6,800 in the United States and 5,000 to 8,000 in Europe.
In response to this information, The Ministry of Health, Labour and Welfare announced that there are 5,000 to 7,000 of them in Japan.
The estimated number of such diseases is said to be more than 6,800 in the United States and 5,000 to 8,000 in Europe.
In response to this information, The Ministry of Health, Labour and Welfare announced that there are 5,000 to 7,000 of them in Japan.
However, most of them are not supported by the national policy in Japan.
Due to the lack of a public support system, there is no research for investigation of causes or development of treatment methods or medicines.
Furthermore, valuable information or support organizations such as patient groups for these diseases do not exist in Japan in most of the cases.
As a result, patients and their families are forced to face with uneasy and solitary lives without even knowing the existence of the same disease patients.
Due to the lack of a public support system, there is no research for investigation of causes or development of treatment methods or medicines.
Furthermore, valuable information or support organizations such as patient groups for these diseases do not exist in Japan in most of the cases.
As a result, patients and their families are forced to face with uneasy and solitary lives without even knowing the existence of the same disease patients.