Japanese Intractable Diseases Information Center

What is an intractable disease?

Definition of Nanbyo  (Intractable Diseases)

The Japanese word nanbyo refers to a disease that is not medically or clearly defined. The expression is commonly used in Japanese societies to refer to so-called “intractable diseases.” Therefore, the diagnosis of an intractable disease may depend on the level of healthcare and the social state of affairs of a country at that time.

Infectious diseases such as dysentery, cholera and tuberculosis were categorized as intractable diseases at a time when the Japanese people lacked sufficient health care. Without effective treatment available, these diseases cost the lives of a great number of people. In that regard, they were undoubtedly intractable diseases. Japanese society has since become much more developed, and in addition to the advancements of public hygiene and medicine, health care and medical care have drastically improved to the point that all of the above mentioned infectious diseases can now be treated, and are no longer considered intractable.

Nevertheless, some diseases remain difficult to treat and easily become chronic, and these are the kind of diseases that are now referred to as intractable. According to the definition set out in the Principles of policy for intractable diseases published in 1972, “nanbyo” refers to:
(1) diseases that have resulted from an unidentifiable cause and, without a clearly established treatment, have a considerably high risk of disability,
(2) 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.

Definition of Tokutei Shikkan  (Specified Rare and Intractable Diseases)

The Japanese phrase tokutei shikkan literally means “specified diseases.” This refers to the type of rare, intractable disease that has resulted from an unidentifiable cause and is very difficult to treat without an established treatment procedure. This type of intractable disease develops chronically and may have serious consequences that make it very difficult or even impossible for patients to return to school or work. Treatment of these designated diseases is very expensive, carrying a high cost of long-term care and medicine, which causes great financial and mental stress on the patient’s family. Due to the lack of information and statistics about the cases of these rare and intractable diseases, a nationwide study on has been needed.

Currently, tokutei shikkan is classified into 130 different designated diseases. The treatment of 56 of these diseases is subsidized from public expense.