Japanese Intractable Diseases Information Center

What is an intractable disease?

The Specified Disease Treatment Research Program (“Tokutei Shikkan Chiryo Kenkyu Jigyo”)

The Specified Disease Treatment Research Program subsidizes medical care for patients of rare and intractable diseases. Although thirty percent co-payment is required for insurance-covered medical care in most cases, the national government and prefectures partly cover the patients’ share of medical expenses by this program. Currently, this system applies to 56 intractable diseases.

Disease list for Specified Disease Treatment Research Program


Each one of these diseases has a criterion for designation. Based on a doctor’s diagnosis, a patient must file an application to the government of the prefecture he or she lives in. If the application is accepted, a Certificate of a Recipient of Designated Disease Treatment is issued. Refer to the guidelines for the system and related procedures, and consult the nearest health center for advice on filing an application.

Outline

A study is underway on diseases with an unidentified cause, non-established treatment procedures and a significant risk of disability. A diagnosis criterion has been established for some of these diseases that include some very intractable and severe illnesses that affect a relatively small number of patients. For these diseases, the identification of causes and the development of treatment procedures would be very difficult without public financial assistance. The Specified Disease Treatment Research Program is designed to address these kinds of intractable diseases. More specifically, policy on the program is based on the opinions of the Specified Disease Conference, an advisory body for the Health Service Bureau of the Ministry of Health, Labour and Welfare.
When the program was established in 1972, it included four diseases, such as Behcet disease. The program has expanded since then, and as of 2009, includes 56 diseases.

How the Program Works

1. Medical Institutions to Treat the Diseases

Governors of prefectures select medical institutions that are deemed to be appropriate for the participation to the program.

2. Subsidy Period

The treatment of a specific disease is subsidized for one year, effective from October 1 to September 30 of the following year. Renewal is required every year. However, the treatment of fulminant hepatitis or severe acute pancreatitis is subsidized for six months in general.

3. Recipients

Recipients of the subsidy have to be patients that have any of the 56 diseases covered by the Specified Disease Treatment Research Program and be beneficiaries of public health insurance. The subsidy is not applicable to patients or medical care not covered by public health insurance.
Public health insurance covered medical care complies with the law concerning the insured and health insurance provided by the national health insurance; the Seamen’s Insurance Law; the law concerning mutual aid association for national public officials; and the law concerning the insured, dependents and elders provided by mutual aid associations for local public services or by mutual aid associations for employees of private schools.
The subsidy is not applicable to medical care that covered by other programs of national or local government in compliance with other law or ordinance.
Please contact your nearest health center for detailed inquiries on the program.

4.Application

Application documents must be submitted to a health center (“hoken-jo”) that has jurisdiction over the area the applicant lives in.
Application documents include application and consent form, clinical research form (“Rinsho Chosa Kojinhyo”) filled and certified by the doctor, certificate of residence, certificate about earnings, and other documents required by the prefecture. As details about application vary among prefectures, please contact the health center (“hoken-jo”).

The governor of the prefecture then inspects the submitted documents and, if the applicant is deemed eligible for a subsidy, a Certificate of the Recipient of Specified Disease Treatment is issued to the applicant via the health center that has jurisdiction over the applicant’s domicile.
A change in the type of health insurance or a change of the hospital or clinic where patient is treated requires a notification to be submitted to the governor of the prefecture. If a recipient becomes ineligible for the subsidy due to remission or death, or if a recipient moves to another prefecture, the recipient must promptly send one’s Certificate of the Recipient back to the prefecture that issued it.
The Certificate of the Recipient of Specified Disease Treatment is effective for one year from October 1 of the issuing year to September 30 of the following year. When the effective period expires, the recipient needs to make an application for the renewal of the certificate.

5.Partial Shouldering of Medical Expense in the Specified Disease Treatment Research Program

The treatment of a specific disease is subsidized for one year, effective from October 1 to September 30 of the following year. Renewal is required every year. However, the treatment of fulminant hepatitis or severe acute pancreatitis is subsidized for six months in general.

1. Recipients of Specified Disease Treatment with the following conditions receive the subsidy for all of the medical costs of their specified disease.
(1) Lower-income recipients who are exempt from resident tax
(2) Patients with severe conditions because of the disease approved by the prefecture
(3) Patients with subacute myeloopticoneuropathy, prion disesase, fulminant hepatitis, or severe acute pancreatitis
2. Other recipients need to pay part of the copayment required by the public health insurance policy at the medical institution according to the table below:

Table: Limits to Patients’ Share of their medical expenses

Types of Patients Limits to Monthly Shares by Types of Patients
Hospitalization Outpatient Care If the patient supports his or her own living
A The person supporting the patient’s living is exempt from resident tax. 0 yen 0 yen 0 yen
B The person supporting the patient’s living is exempt from income tax for the previous year. 4,500 yen 2,250 yen Monthly limit is a half of the amount shown left for patients who supports his or her own living
C The person supporting the patient’s living paid income tax of 5,000 yen or less for the previous year. 6,900 yen 3,450 yen
D The person supporting the patient’s living paid income tax of between 5,001 yen and 15,000 for the previous year. 8,500 yen 4,250 yen
E The person supporting the patient’s living paid income tax of between 15,001 yen and 40,000 yen for the previous year. 11,000 yen 5,500 yen
F The person supporting the patient’s living paid income tax of between 40,001 yen and 70,000 yen for the previous year. 18,700 yen 9,350 yen
G The person supporting the patient’s living paid income tax of 70,001 yen or more for the previous year. 23,100 yen 11,550 yen

*Each of the amounts shown above is applicable per medical institution.
*The partial sharing does not apply to the expense for home-visit nursing care and for prescribed medicines bought at a pharmacy.

Appendix

There are some other assistance with medical expenses available in some prefectures. Contact your nearest health center for detailed information.