The Intractable Disease Financial Assistance Program in Japan

02 Sep 2019 3:57 PM | Anonymous member (Administrator)

It’s the beginning of September, the second term of the school year has started, obon vacation is becoming a distant memory, and everyone is getting back into their routines. Not here at AFWJ though - we are gearing up for our big 50th anniversary celebration and annual convention! With everyone busy preparing for the convention and still feeling the effects of the long, hot summer, I was at a loss of what to write for this month’s blog post. Instead of trying to come up with something totally brand new, I thought I’d share an article that I wrote earlier for the AFWJ Journal. Our journal offers an insider's look into the lives of our members and explores all kinds of topics that are relevant to us. This article is just one example of the many types of articles and information you can find in the AFWJ Journal.

The Intractable Disease Financial Assistance Program in Japan

A long-term illness requires long-term treatment which can put a financial strain on the patient and their family. In Japan the health insurance system is quite good, but even the 30% portion the patient must pay can really add up over time, especially if the drugs required for treatment are expensive. Luckily, there is a financial assistance program in place under the Intractable Disease Healthcare Act for those of us who have an intractable disease.

What is an Intractable Disease?

As of April 2017 there are 330 diseases classified as intractable diseases in Japan (難病). There are two prongs to defining an intractable disease: it must be a disease in which its cause hasn’t been discovered yet and there is no established therapy, such as Behcet’s disease, aplastic anemia, and malignant RA; and it must be a disease which is chronic and poses financial and burden of care problems, such as pediatric cancer, progressive muscular dystrophy etc. For practical assessment a disease qualifies as an intractable disease if it meets these 5 criteria:

  1. Rarity - affecting less than 0.1% of the population

  2. Unknown etiology

  3. Lack of effective treatment

  4. Necessity of long term treatment

  5. Existence of objective diagnostic criteria

If you have an intractable disease you can apply for financial assistance, which will help cover your treatment. The amount that will be covered depends on your household income. The smaller your household income is, the more assistance you qualify for. Once you jump through the bureaucratic hoops in order to get your intractable disease financial assistance, you will also become part of the The National Registry of Designated Intractable Diseases, which maintains a national database of patients. 

The Ministry of Health, Labour, and Welfare gathers the financial assistance registration forms for analysis in order to integrate individual research projects in four areas:

  1. Disease-oriented research

  2. Field-oriented research

  3. Cross-sectional research

  4. Practical research projects

Congratulations! By registering for financial assistance you are providing the government with information that can help further scientific research of intractable diseases! 

How Do I Get Financial Assistance?

My doctor told me about the intractable disease financial assistance program right after he told me I have SLE and would be starting a small cocktail of drugs. He thought I would qualify because he assumed I was a Japanese citizen! I had to inform him that no, just because I am married to a Japanese man, that does not make me a citizen. He promised he would check into whether or not I could qualify for the financial assistance and let me know at my next appointment. I checked into it and as far as I could tell, if you are a resident of Japan and have health insurance here - either national(国民保険)or social (社会保険)you can qualify for the financial assistance. 

Once you have been diagnosed with an intractable disease your doctor will need to fill out a registration form which may include:

  1. General information about you

  2. Your diagnosis

  3. The onset and progressive course of your illness

  4. Clinical findings

  5. The severity of your illness 

  6. Laboratory findings

  7. Differential diagnosis

  8. Treatment

  9. Prognosis

The forms differ among the prefectures and I took a peak at mine and noticed that it only had about 5 or 6 of the items from this list - it was definitely lacking the prognosis part, which I was most curious about! Although the Ministry of Health, Labour, and Welfare launched an online registry, I have no idea how this works in practice as I had to physically take my registration form, along with a multitude of other documents to my local Public Health Centre (保健所). Once you’ve gather the appropriate forms you will submit them to the local Public Health Centre for approval. The Public Health Centre will then turn your application and documents over to the governor of the prefecture’s office for approval. Once the governor’s office decides whether or not the patient qualifies for assistance they will send the claimant certifications back to the Public Health Centre, which will then send them back to you. All in all, the documents only have to pass through several offices and who knows how many hands in order to complete the process and only takes approximately 2 months - bureaucracy at its finest! 

Once you’ve received your medical expense coverage certificate it will cover medical expenses that are incurred by treatment of your illness and only your illness, not anything else. The specific medical expenses coverage (特定医療費) kick in once total expenses per month exceed 33,330 yen for at least 3 months. Depending on your financial situation, coverage may be greater. You must also be sure to receive treatment for your illness at an approved hospital or clinic or your expenses might not be covered. The Public Health Centre will provide you with a list of approved places and you will need to pick your top 3 and list them on your application. 

What Documents Do I need?

Now, because this is Japan - the land of forms and bureaucracy - you are going to need about a zillion documents to support your existence, your financial standing, insurability, visa status, et cetera. Plus you are guaranteed to be missing or have the wrong forms at least once or twice during this application process. Each prefecture is a little different but here are the things needed to apply where I live:

  1. The clinical results form from your doctor (臨床調査個人票)

  2. Certificate of Residence

  3. Last year’s income tax records (or those of your spouse, if you are a dependent)

  4. Welfare Claimant Certificate 

  5. Application form

  6. A statement of earnings that qualify for insurance (医療保険上の所得区分照会)

  7. Copy of your Health Insurance Card (and that of the primary holder, if you are a dependant)

  8. A stamped self-addressed envelope

  9. Inkan

  10. ID of the person coming to apply if different than the patient applying for coverage

  11. A copy of the “my number” cards of the people under the primary holder’s health insurance 

  12. Credit limit authorization certificate

  13. A copy of your former designated intractable disease claimant certificate 

  14. Pension claimant income certification (the householder’s will be needed as well if it is higher than yours)

  15. Confirmation of medical expenses

If you manage to gather all the necessary documents and head down to the Public Health Centre to complete the process all in one go - good job! If not, just keep at it and you will eventually gather all the documents you need in order to obtain financial assistance for your intractable disease. As an added bonus: since Japan is the land of bureaucracy, you’ll get really good at gathering documents and applying, since you need to do it every year in order to continue receiving financial assistance for the treatment of you intractable disease!

For more information please see:

The Japan Intractable Diseases Information Center = [the MHLW site with up-to-date diagnostic guidelines]

An excellent article on The National Registry of Designated Intractable Diseases can be found here

For an overview of the basic health insurance structure of Japan = [click on English link]

By: S.Suzuyama


  • 16 Sep 2019 2:48 AM | Anonymous member
    Hi, just thought I'd let you know that I couldn't get the second link to work.
    Link  •  Reply
    • 01 Oct 2019 4:33 PM | Anonymous member (Administrator)
      Thank you so much for letting me know! I have fixed the broken link.
      Link  •  Reply

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