The Intractable Disease Medical Care Recipient Certificate
Tokutei Iryouhi Jukyuusha Shou / 特定医療費受給者証
Some disabilities are caused by intractable diseases: conditions that are chronic, difficult to treat, and require long-term medical care. If your child or family member has a condition like muscular dystrophy, ALS, spinal muscular atrophy, tuberous sclerosis complex, Rett syndrome, Angelman syndrome, West syndrome, Dravet syndrome, or any of approximately 348 other designated intractable diseases (shitei nanbyo / 指定難病), this program directly affects your family in two ways.
First, the intractable disease medical care recipient certificate (tokutei iryouhi jukyuusha shou / 特定医療費受給者証) reduces the medical costs for treatment of the designated disease. You pay a reduced copay up to an income-based monthly cap, and the rest is covered by public funds.
Second, and this is something many families do not know: people with designated intractable diseases can access disability welfare services (shougai fukushi saabisu / 障害福祉サービス) under the Disability Comprehensive Support Act (shougaisha sougou shien hou / 障害者総合支援法) without holding a disability handbook (shougaisha techou / 障害者手帳, also called a disability certificate). This means services like home help (kyotaku kaigo / 居宅介護), short-stay respite care (tanki nyuusho / 短期入所), mobility support (idou shien / 移動支援), and group homes (guruupu hoomu / グループホーム) are available even without a disability handbook. Currently, 376 diseases are recognized for this purpose.
This is also the adult continuation of the chronic pediatric disease medical fee subsidy (shounikaman tokuteishippei iryouhi josei seido / 小児慢性特定疾病医療費助成制度). If your child is approaching age 18 and currently uses the pediatric program, this article explains the adult pathway. See our article on the chronic pediatric disease medical care recipient certificate.
What Does This Program Do?
The intractable disease medical care recipient certificate reduces the medical costs for treatment of the designated disease at designated medical institutions (shitei iryou kikan / 指定医療機関). You pay a reduced copay up to an income-based monthly cap, and the remaining costs are covered by public funds.
The coverage applies to insurance-covered medical expenses related to the designated disease and any conditions that arise from it, including outpatient visits, hospitalization, prescriptions, and visiting nurse services. The program does not cover non-insurance items or treatment at non-designated institutions (except in emergencies).
For current copay cap amounts by income level, check with your prefecture or see the prefectural pages linked in the Useful Resources section below.
Who Is Eligible?
You must have a diagnosis of one of the approximately 348 designated intractable diseases (shitei nanbyo / 指定難病) established under the Intractable Disease Act (nanbyou hou / 難病法), and your condition must meet the disease-specific severity criteria. Alternatively, if your condition does not meet the severity criteria but your medical costs are high (the “light symptoms, high costs” pathway), you may still qualify.
The full disease list is published on the Intractable Disease Information Center (Nanbyou Jouhou Sentaa / 難病情報センター) website. Common conditions relevant to families of people with disabilities include muscular dystrophies, spinal muscular atrophy, ALS, tuberous sclerosis complex, Rett syndrome, Angelman syndrome, West syndrome, Dravet syndrome, and many other neurological, metabolic, and genetic conditions.
If your family member has a condition that causes or contributes to their disability, check the disease list. Many families assume their family member’s condition is “a disability, not a disease” and never look into this program, missing out on significant cost reduction.
This is a national program. The same disease list and the same eligibility criteria apply across all of Japan.
The Connection to Disability Welfare Services
This is one of the most important things in this article for families navigating the disability system.
Since 2013, people with designated intractable diseases have been eligible for disability welfare services under the Disability Comprehensive Support Act (shougaisha sougou shien hou / 障害者総合支援法), even without a disability handbook (shougaisha techou / 障害者手帳). Currently, 376 diseases are recognized for this purpose. The list includes all designated intractable diseases plus additional conditions.
This means a person with a qualifying intractable disease can apply for home help (kyotaku kaigo / 居宅介護), short-stay respite care (tanki nyuusho / 短期入所), group homes (guruupu hoomu / グループホーム), employment support, mobility support (idou shien / 移動支援), and other disability welfare services at their disability welfare desk (shougai fukushi ka / 障害福祉課) using their intractable disease diagnosis as the basis.
For families who have not yet obtained a disability handbook, or whose family member’s condition does not fit neatly into one of the three handbook categories, this is an alternative pathway into the disability welfare system. See our article on disability welfare services in Japan for an overview of available services.
How to Apply
The application goes to your prefectural health center (hokenjo / 保健所) or your designated city’s application window. This is not the same office as the disability welfare desk (shougai fukushi ka / 障害福祉課) at your ward office.
You will need an application form (available from the health center), a clinical survey form (rinshou chousa kobetsu hyou / 臨床調査個人票) completed by a designated intractable disease doctor (nanbyou shitei i / 難病指定医), your health insurance card, your My Number card or notification, and income-related documents to determine your copay category.
The clinical survey form is specific to the designated disease and must be completed by a doctor who holds the intractable disease designated doctor credential. Your specialist doctor is likely already designated, but confirm with them before applying. There is usually a fee for the doctor to complete this form, which you pay out of pocket.
Processing typically takes several weeks to months. If approved, you will receive an intractable disease medical care recipient certificate (tokutei iryouhi jukyuusha shou / 特定医療費受給者証). Since October 2023, the medical fee assistance can be backdated to the date the designated doctor diagnosed the condition as meeting the severity criteria, not just the application date.
Designated Medical Institutions
The reduced copay only applies at medical institutions designated for this program (shitei iryou kikan / 指定医療機関). This includes hospitals, clinics, pharmacies, and visiting nurse services. Most major hospitals are designated, but confirm before your first visit. In emergencies, you can use a non-designated institution and apply for reimbursement afterward.
Renewal
The recipient certificate is valid for one year. You must renew annually by submitting an updated application with a new clinical survey form before the expiration date. Start the renewal process early, as processing takes time. If the recipient certificate expires, the reduced copay stops immediately.
Transitioning from the Pediatric Program
If your child currently holds a chronic pediatric disease medical care recipient certificate (shounikaman tokuteishippei iryou jukyuusha shou / 小児慢性特定疾病医療受給者証) and their condition is also on the designated intractable disease list, they can apply for the intractable disease recipient certificate as they approach adulthood. However, not all pediatric chronic diseases have a corresponding intractable disease designation, and the diagnostic criteria and severity criteria may differ between the two programs.
Start this process before your child ages out of the pediatric program. Ideally, apply for the intractable disease recipient certificate while the pediatric recipient certificate is still active so there is no gap in coverage. Talk to your child’s specialist doctor about the timing and whether the condition qualifies under the adult program.
How This Relates to Other Medical Cost Programs
The intractable disease recipient certificate can be used alongside other medical cost programs:
The independence support medical care recipient certificate (jiritsu shien iryou jukyuusha shou / 自立支援医療受給者証) may cover treatments not directly related to the intractable disease. See our article on the jiritsu shien iryou jukyuusha shou.
The severely disabled persons medical fee subsidy (juudo shinshin shougaisha iryouhi josei seido / 重度心身障害者医療費助成制度) may cover remaining copays after the intractable disease recipient certificate is applied. See our article on the severely disabled persons medical fee subsidy.
When presenting at a medical institution, show all of your recipient certificates. Ask the institution which should be applied first.
Practical Tips
• Check the disease list even if you think it does not apply to you. Many conditions that cause disabilities are also designated intractable diseases. The Intractable Disease Information Center website has a searchable list.
• If your family member has an intractable disease and does not hold a disability handbook, they can still access disability welfare services. Apply at your disability welfare desk (shougai fukushi ka / 障害福祉課) using the intractable disease diagnosis. You do not need a disability handbook for this.
• The application for the medical care recipient certificate goes to the prefectural health center (hokenjo / 保健所). The application for disability welfare services goes to the disability welfare desk (shougai fukushi ka / 障害福祉課). These are different offices for different programs, but both are available to people with intractable diseases.
• If your child is transitioning from the pediatric program, do not wait until the last minute. Apply for the adult intractable disease recipient certificate while the pediatric recipient certificate is still active.
Key Terms
| English | Japanese |
| Intractable disease medical care recipient certificate | tokutei iryouhi jukyuusha shou / 特定医療費受給者証 |
| Designated intractable disease | shitei nanbyo / 指定難病 |
| Intractable Disease Act | nanbyou hou / 難病法 |
| Designated intractable disease doctor | nanbyou shitei i / 難病指定医 |
| Clinical survey form | rinshou chousa kobetsu hyou / 臨床調査個人票 |
| Designated medical institution | shitei iryou kikan / 指定医療機関 |
| Prefectural health center | hokenjo / 保健所 |
| Disability Comprehensive Support Act | shougaisha sougou shien hou / 障害者総合支援法 |
Useful Resources
Intractable Disease Information Center (難病情報センター) – Disease list, severity criteria, application guidance
Intractable Disease Information Center: Medical Fee Subsidy Guide (指定難病患者への医療費助成制度のご案内)
https://www.nanbyou.or.jp/entry/5460
Intractable Disease Information Center: Disability Welfare Services for Intractable Disease Patients (障害福祉サービス等) – Confirms access to disability services without a disability handbook
https://www.nanbyou.or.jp/entry/5702
MHLW: Intractable Disease Patients Eligible for Disability Welfare Services (障害者総合支援法の対象疾病（難病等）) – Full list of 376 diseases qualifying for disability welfare services
https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/hukushi_kaigo/shougaishahukushi/hani/index.html
