Health and Global Policy Institute (HGPI) launched the Intractable & Rare Diseases Project in FY2024 and hosted a symposium titled “Future Measures for Intractable Diseases from the Perspectives of Patients and Citizens” to mark Intractable Disease Day on May 23, 2024. There, we held multi-stakeholder discussions on the future of measures for intractable diseases. A report on the symposium can be found here.

Among the many issues in health policy, intractable disease is one of the most important. While intractable diseases are often discussed alongside rare diseases, they are characterized by the fact that for many intractable diseases, the underlying mechanisms have yet to be identified and clear treatment methods have yet to be established. Certain aspects of these conditions also place particularly heavy physical and psychological burdens on patients, such as the need to undergo long-term treatment. Japan currently designates 341 conditions as “intractable diseases,” and they are estimated to affect over 1 million people.

The enactment of the Act on Medical Care for Patients with Intractable Diseases in 2014 set a direction that includes promoting healthcare and improving the social environment. However, a number of lingering challenges related to intractable disease measures have been pointed out. At our symposium to mark Intractable Disease Day on May 23, 2024, we examined a number of items like the role of designated intractable diseases, disseminating information to society, and the establishment of a system to promote early diagnosis, and emphasized the importance of eliminating diagnosis lag and to have participation from people with lived experience with intractable diseases and citizens in the policy-making process. There were also high expectations expressed for discussions to expand beyond treatment and encompass daily living for people living with intractable diseases and their families.

For the 130th HGPI Seminar, we will host Ms. Nana Ando, who serves as a journalist on the medical desk at the Editorial Bureau of the Yomiuri Shimbun Tokyo Headquarters. From the perspective of a medical journalist and as a family member of someone living with an intractable disease, Ms. Ando will discuss current circumstances surrounding intractable diseases, the role of the media as viewed through the lens of her past coverage, and what is needed in terms of future intractable disease policy.

[Event Overview]

• Speaker: Ms. Nana Ando (Journalist, Medical Desk, Editorial Bureau, Tokyo Headquarters, The Yomiuri Shimbun)
• Date & Time: Tuesday, January 28, 2025; 15:00-16:30 JST
• Format: Online (Zoom webinar)
• Language: Japanese
• Participation Fee: Free
• Capacity: 500 participants

■Profile:

Ms. Nana Ando (Journalist, Medical Desk, Editorial Bureau, Tokyo Headquarters, The Yomiuri Shimbun)

Ms. Nana Ando is a graduate of the Chuo University Faculty of Law. She joined the Tokyo Headquarters of the Yomiuri Shimbun in 2010. After serving in posts at the Nagano Office and in the Economics Department, she has been covering healthcare as a journalist on the medical desk since 2017. Her main areas of coverage currently include pediatrics and reproductive medicine.
Ms. Ando’s younger sister lives with a designated intractable disease called Rett syndrome, and she became a medical journalist out of her desire to broadly disseminate reliable information to people living with intractable diseases and their families. In that role, she continues to report on research on new methods of diagnosing and treating intractable diseases, and on issues in the daily living environment for affected parties.