[MHLW] Opinion Paper for the Review of Current Measures against Intractable and Specific Pediatric Chronic Diseases Released

On 14 July 2021, the Ministry of Health, Labour and Welfare (MHLW) released an opinion paper concerning the review of the measures being implemented against intractable diseases and specific pediatric chronic diseases.

The Joint Committee of two committees compiled the opinion paper, i.e., the Committee on Measures against Intractable Diseases under the Health Sciences Council' Disease Control Division and the Specialist Committee on the Modality of Support for Children with Specific Pediatric Chronic Diseases in the Children's Section of the Social Security Council.

Until 2014, MHLW implemented measures to support patients with intractable diseases through budgetary measures. However, significant reforms have been made with the enactment of the Act on Medical Care for Patients with Intractable Diseases and the Revised Child Welfare Act in the same year, and it gave a legal basis for those measures. The Supplementary Provisions of these Acts stipulate that the implementation of related affairs is to be reviewed within five years of their effective dates. Accordingly, the Joint Committee established two working groups for further consideration envisaging the revision, i.e., the Working Group for Survey and Research on Intractable and Specific Pediatric Chronic Diseases and the Working Group for Community Inclusion of patients living with such diseases. Each working group compiled their report respectively in December 1989 and January 2020.

Based on these reports, the Joint Committee has discussed further since January 2020 and has summarized the deliberations in the opinion pater.

Below are the main points of the opinion paper.

◎ Basic Approach

Pursuant to the basic principles of the Act on Medical Care for Patients with Intractable Diseases, the government will take comprehensive measures to overcome intractable diseases and ensure that patients are not prevented from living in the community with dignity, among other people.

◎ Promotion of Research/Medical Care (Enhancement of high-quality and appropriate medical care)

The start of the subsidy should be retroactive from the time of application to the time when the symptoms become severe.
Improvement and utilization of the database
Introduction of a system to register patients who do not apply for medical cost subsidies

◎ Promotion of Inclusion in the community (Strengthen support for the lives of patients undergoing treatment for intractable diseases)

To strengthen the support system in the community:

The Acts should specify that the Intractable Disease Consultation Support Center collaborates with support organizations working for welfare and employment.
The Acts should place a local support council for children with chronic diseases in the provisions and clarify cooperation with a local council on measures for intractable diseases.

To strengthen the Independence support services for children with specific pediatric chronic diseases:

To create a flow of grasping the current situation, analyzing issues, and planning and implementing voluntary projects, grasping the actual situation of the community should be a mandatory duty of local governments.
To improve the implementation rate of voluntary projects, the government should actively consider making voluntary projects mandatory.

To issue "registrant card" (tentative name)

Governments issue a "registrant card" (tentative name) to patients who have registered their data.
The "registrant card" (tentative name) will include information on services available in the community, and the government will encourage the relevant service providers for the patients as a substitute for a doctor's certificate.

For more information, please visit the following websites (in Japanese only)　　https://www.mhlw.go.jp/stf/newpage_19838.html