Q&A of Nanbyo Act

Genesis of the Iatric Services to Patients Suffering from Intractable Diseases (Nanbyo Act) Promulgated on May 30th, 2014

Translation and Reprint of:
Nanakamado Newsletter 11: NPO Nanbyo Support Network Hokkaido, 2014. p2-4

Questions & Translation by:
Shiori Nagamori, Nanbyo Support Network Hokkaido

Answers and clarification by:
Tateo Ito, Japan Patients Association / Nanbyo Support Network Hokkaido

Please review the details of the following two acts approved by the Japanese Diet (government) on May 23rd, 2014.

  1. Act for Iatric Services to Patients Suffering from Intractable Diseases
  2. The amendment of the Child Welfare Act

The outline of the measure to counter intractable diseases took effect in 1972.

First, the group researching SMON (Subacute Meylo-Optico-Neuropathy) was organized.

They quickly diagnosed the cause.

The diagnosis confirmed that chemical poisoning from intestinal disorder medication was the cause.

The finding prompted research on a nationwide scale by doctors and other reputable research groups to find treatments for other intractable diseases.

Eligible patients qualify for government research subsidies.

The subsidies support needy patients and help to develop an accurate database used to further research treatment and potential remedies for patients with intractable diseases.

Initially, National and Prefectural governments contributed equally to these subsidies.

As qualified patient numbers increased, the government subsidies increased accordingly.

However, eventually the National contribution was exhausted.

Therefore, the Prefectural government contributions were increased.

There were many diseases that qualified for this system, but it was impossible to include all of them.

The target diseases increased in number from (4) to (56) over a (42) year period.

However the process of choosing the diseases required improved clarity.

PG’s consist of patients and family members with disease commonalities.

The All Japan Nanbyo (Intractable Diseases) Association was organized in 1972 and it contributed to the policies relating to Intractable Diseases.

Many Regional Nanbyo Associations were founded in each prefecture.

After which, the PG’s for each disease were formed one after another.

The PG’s cooperated with each other and convened many social and developmental events.

In addition, petitions were conducted in order to enhance government support and services.

The Regional Nanbyo Associations and the All Japan Patients Organization were merged into the Japan Patients Council (JPC) in 1986.

Further amalgamation took place in 2005 when the JPC and the All Japan Nanbyo Association merged forming the Japan Patients Association (JPA).

The JPA continued to convene many events and activities not only for Nanbyo patients, but also, long-term chronic patients and children with chronic diseases.

In 2001, the Nanbyo committee initiated a reformation process.

In 2009, for the first time, a PG’s representative became a full Nanbyo committee member.

Through deliberations with researchers, government administrators, medical workers, and PG’s, the Iatric services to patients suffering from intractable diseases act was introduced to the National Diet in 2013.

The act was promulgated on May 30th, 2014.

What were the key points of deliberations at the Nanbyo committee meetings?

The main focus was defining Nanbyo relative to international standards and identification of the number of target diseases.

The existing Japanese definitions of Nanbyo are the following:

  1. Disease Cause Unknown
  2. Limited Treatment Options
  3. Rare Disease* Determination
  4. Long-term Care Requirement

*Rare disease determination = affected patients < 0.15%, w/exceptions Three hundred target diseases have been identified to date.

Also discussed was the creation of a legislative act encompassing:

  1. Target Diseases
  2. Financial Support
  3. Patient Support
  4. Hospital and Care Facilities
  5. Insurance Coverage
  6. Research and Development

Other relative topics debated and finalized, included:

  • Additional Financial Support, proposed Japan Consumption Tax increase (2018)
  • Governments’ Financial Support Commitment
  • Welfare Services
  • Patient Fees Determination
  • Doctor’s Qualification
  • Nanbyo Support Centers
  • Government Role
  • Nanbyo Policy
  • Less Severe Patient Support
  • Child / Adult Care Transition
  • Proportioned Finances Relative to Legislation

Furthermore, prior to the establishment of the Nanbyo Act (2014), patients were supported by the Disability Act.

The Nanbyo Act has streamlined and improved the support identified patients in conjunction with the Disability Act.

What are the key development points of the Nanbyo Act.

  • The former program for Nanbyo patients identified 56 specific diseases initially.
  • It has since increased to include 300 specified diseases.
  • Following the assessment process to determine support levels, severe and less severe patients are eligible for welfare services.
  • On an interim basis (3 years) former specified patients can receive the same level of the financial support.
  • Monthly medical fee limits are determined based on household income and reduced if (2) or more patients reside at the same residence.
  • Patients are only required to pay the maximum assessed amount even when multiple care facilities are needed and/or additional medication is prescribed.
  • Fee coverage is not limited to only a hospital visit and include medication expenditures as well.
  • Hospital stay meal costs are charged to patients.
  • Monthly medical fee limits for patients under 18 are 50% less than adult.
  • Patients must submit documentation stipulating their monthly limit to the hospital personnel during visits.
  • New patient applicants must be seen by a Nanbyo designated physician and continual consultation is required for annual program renewal.
  • Physician designation is granted by the prefectural government after a training program.

What are the intensions of this Act?

  • Through legislation, the establishment of an impartial and stable system for financial support to Nanbyo patients
  • The design of a fundamental policy, to promote research and development, and to improve hospitals, care facilities and home care service abilities.

The basis of which was determined by the comprehensive reform of the tax and social security policy in 2013.

The Ministry for Health, Labour, and Welfare made the fundamental policy to promote medical services for Nanbyo patients.

What obstacles were identified with the many patients’ groups and subsequent resolutions agreed upon prior to the conclusion of the Act?

The obstacles included:

Patient categorization, number and determination of specialized physicians, medical services accessibility and identification of patients’ groups.

Unfortunately and against the requests of several PG’s, some diseases were not classified due to requirement restrictions.

The PG’s compromised and decided that receiving welfare and medical services as well as research and financial support was the best option.

The Nanbyo promotion group representing Japanese national diet members and the PG’s petition served an important role towards the fruition of the Act.

The cooperation efforts by all especially the Ministry for Health, Labour, and Welfare and the PG’s was exemplary.

What are the supplementary resolutions of this Act.

It was unanimously determined that the insufficient points of the act would be reviewed in five years.

Other than legislation, did the Nanbyo committee members consider other options?

Yes, other options were considered but the stability of legislation was preferred.

What do the PG’s have to do about this Act in the future?

What is the future role of the Patients’ Groups?

Their roles will be expanded to include:

  • Joining local promotion societies as patients and family members supporting Nanbyo.
  • Informing welfare recipients regarding available services and working to resolve regional medical service deficiencies.
  • Ensuring that local government and local assemblies procure medical and welfare services from local governments.

How is this act a “game changer?”

Because the core difference between similar legislation is that the Nanbyo Act is a comprehensive policy which includes research and medical services, financial support and welfare services from local governments.

It was drafted through a unique collaboration with administrators, researchers and the PG’s.

Also it was decided the PG’s have a guaranteed voice at any future changes or revisions to the Act.

This cooperation between entities is especially beneficial for Asian and developing countries.