*The event report has been published. (August 23, 2024)
*A Recording has been released on the following pages. (June 20, 2024)

Health and Global Policy Institute (HGPI) held an Intractable Disease Day Symposium: Future Measures for Intractable Diseases from the Perspectives of Patients and Citizens on 23rd May.

Although health policy spans a wide variety of topics, intractable diseases are one of the most important. While they are often discussed alongside rare diseases, certain aspects of intractable diseases place particularly heavy physical and psychological burdens on patients. We have yet to identify the underlying mechanisms or establish clear treatment methods for intractable diseases. They also require patients to undergo long-term treatment. Japan currently designates 341 conditions as “intractable diseases” and they are estimated to affect over 1 million people.

Starting the compilation of the “Outline of Intractable Disease Measures” in 1972, the Government of Japan has been advancing measures for intractable diseases through the promotion of R&D, improving the healthcare provision system, and supporting patients, mainly through the subsidization of care. After the formation of the Liaison Council for Intractable Disease Treatment and establishment of Intractable Disease Support Centers in each prefecture in 1998, joint efforts with the welfare system have been underway to improve living environments and provide employment support for people living with intractable diseases. The Long-Term Care Insurance System has made it possible to provide long-term care to people who require it due to an intractable disease, and a direction for intractable disease measures that include promoting healthcare and improving the social environment was set by the enactment of the Act on Medical Care for Patients with Intractable Diseases in 2014.

However, measures for intractable diseases face a number of lingering issues. For the healthcare provision system, these include information disparities, in which people do not receive enough of the information they need; long diagnostic delays or diagnosis lag; regional healthcare disparities; and collaboration spanning pediatric healthcare to adult healthcare. There are also a number of actions that should be taken for R&D. For example, we hope to see the establishment of a data aggregation system to further basic research on each disease as well as the promotion of Patient and Public Involvement (PPI) to encourage research that reflects patients’ needs in the development of therapeutics.

At this symposium, we held a multi-stakeholder discussion on the nature of intractable disease control to identify issues to address in the future and disseminate those issues to greater society.

■Recording of the Sympojium (2h 08min)

[Event Overview]

• Date & Time: Thursday, May 23, 2024; 15:00 – 17:00 (Open 14:45)
• Format: Hybrid in-person and online format
• Venue: Global Business Hub Tokyo Field (Grand Cube 3F, Otemachi Financial City, 1-9-2, Otemachi, Chiyoda-ku, Tokyo, JAPAN 100-0004)
• Language: Japanese and English (with simultaneous interpretation)
• Participation Fee: Free
• Organizer: Health and Global Policy Institute (HGPI)
• Supported by: Japan Patients Association (JPA); NPO ASrid

[Program] (titles omitted)

15:00-15:05	Opening Remarks: Marking the Occasion for Intractable Disease Day
	Kunio Tsuji (Standing Director, JPA)
15:05-15:20	Presentation 1: The Past and Future of Measures for Intractable Diseases From the Viewpoint of Civil Society
	Yukiko Nishimura (President, NPO ASrid)
15:20-15:35	Presentation 2: Measures for Intractable Diseases in Japan
	Masaaki Yokota (Deputy Director, Intractable Disease Control Division, Public Health Bureau, Ministry of Health, Labour and Welfare (MHLW))
15:40-15:55	Presentation 3: Current Status and Future Prospects for Research in Intractable Diseases
	Tadayoshi Nakashima (Research Officer, Intractable disease/Rare disease, Rare/Intractable Disease Project, Division of Strategic Planning and Evaluation, Department of Innovative Drug Discovery and Development, The Japan Agency for Medical Research and Development (AMED))
15:55-16:10	Presentation 4: Intractable Disease Measures from Local Governments
	Shizuko Tsushima (Director, Cancer and Disease Control Division, Healthcare and Medical Services Department, Health and Medical Services Bureau, Kanagawa Prefectural Government)
16:10-16:25	Presentation 5: Co-creating Research with Patients and Citizens
	Atsushi Kogetsu (Assistant Professor, Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University)
16:30-17:00	Panel Discussion: The Future of Intractable Disease Control from the Perspectives of Patients and Citizens
	Panelists Keita Otsubo (Secretary General, JPA) Atsushi Kogetsu (Assistant Professor, Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University) Tadayoshi Nakashima (Research Officer, Intractable disease/Rare disease, Rare/Intractable Disease Project, Division of Strategic Planning and Evaluation, Department of Innovative Drug Discovery and Development, The Japan Agency for Medical Research and Development (AMED)) Yukiko Nishimura (President, NPO ASrid) Masaaki Yokota (Deputy Director, Intractable Disease Control Division, Public Health Bureau, Ministry of Health, Labour and Welfare (MHLW)) Moderator Shunichiro Kurita (Senior Manager, HGPI)