*A discussion points paper written in English and its summary paper are published on September 1, 2025.

To encourage new developments in the area of blood disorders and the spread of best practices from this area to other disease areas, Health and Global Policy Institute (HGPI) launched a policy recommendation project titled the “Blood Disorder Measures Promotion Project” in FY2024. Today, we have presented a summary of discussion points from multi-stakeholders discussions and individual hearings with parties related to blood disorders that were held for this project.

Against the backdrop of complex factors like changing lifestyles and population aging, chronic and non-communicable diseases (NCDs) are increasing around the world. At the same time, innovations like the development of new medicines have opened paths to remission for some conditions among this wide range of diseases, including rare diseases and blood disorders. In recent years, there has also been progress in a transition from “healthcare that cures” diseases to “healthcare that enables people to live alongside” diseases, increasing the need for measures that enhance quality of life (QOL).

Within this context, in the area of blood disorders, various related parties starting with the Japanese Society of Hematology were early to focus on the needs of people living with blood disorders and other affected parties, and have been advancing a number of innovative initiatives. Blood disorders are characterized by their highly specialized nature, rarity, and need for long-term, advanced therapy. As such, this is an area that requires flexible, multi-tiered responses that exceed traditional frameworks in terms of health systems, institutional operations, and patient support. In addition to advances in medical technology, stakeholders like academic societies and pharmaceutical companies are also making progress in initiatives that actively incorporate the perspectives of people living with blood disorders and other affected parties. These efforts have made the area of blood disorders a leader for the patient-centered healthcare model within domestic healthcare, and expectations are high for these practices to be introduced in other disease areas.

Within this context, HGPI launched the Blood Disorder Measures Promotion Project in line with its stated mission of “Achieving citizen-centered health policy.” In FY2024, we hosted multi-stakeholder discussions and individual hearings with representatives of industry, academia, and civil society, which was an unprecedented effort in the area of blood disorders. To conclude those discussions, we organized each issue into the following four perspectives and reached an agreement on our future direction.

Perspective I. Structural issues of the healthcare provision system
Perspective II. Issues facing community transition and collaborative treatment
Perspective III. Obstacles to patient-centered healthcare and QOL improvements
Perspective IV. Challenges for R&D and for institutional support

Based on approaches to solutions crystallized through this project to date, in FY2025, HGPI will accelerate efforts to further advance citizen-centered health policy in the area of blood disorders.

■ Blood Disorders Control Promotion Project advisory board (titles omitted, in Japanese syllabary order)

Ayako Arai (Professor and Chair, Department of Hematology and Oncology, St. Marianna University School of Medicine)
Kota Ohashi (Director, Totus Homecare Clinic; Representative, NPO Hemato-Homecare Network)
Ryutaro Kobayashi (Representative, The Association of Chronic Myeloid Leukemia Patients and Families “Izumi”)
Akifumi Takaori-Kondo (Director, Kyoto University Hospital; President, the Japanese Society of Hematology)
Tomoiku Takaku (Professor, Department of Hematology, Saitama Medical University Hospital)
Akiko Hashimoto (President, NPO Tsubasa Information Platform for Patients with Blood Disorders)
Shinsuke Muto (President, Tetsuyu Institute Medical Corporation)
Masakazu Yamaguchi (Department Director of Pharmacy, the Cancer Institute Hospital of JFCR)
Ken Watanabe (Director, Hareno Terrace Sukoyaka Clinic)
Lisa Machado (Founder, Canadian CML Network)

■ Project sponsors (in Japanese syllabary order)

Integrity Healthcare Co., Ltd.
Novartis Pharma K.K.