Japan 2025: JSMO, the Future Role of Advocates, and Supporting the Growth of Patient Advocacy
Nearly 150,000 people were diagnosed with colorectal cancer in Japan in 2022, and more than 60,000 died of the disease. The incidence of CRC in Japan has been steadily rising since 2003 and mortality from colorectal cancer is predicted to increase by 15% over the next 20 years.
And while colorectal cancer incidence and mortality rates are similar in Japan and the United States, the patient experience and advocacy landscape vary greatly. There are no colorectal cancer specific advocacy organizations in Japan, but the advocacy community is growing. The Global Colon Cancer Association partners with more than 110 patient advocacy organizations in 56 different countries around the world and has identified opportunities to advance CRC advocacy and efforts in Japan over the past year, engaging advocates in different cancer communities and exploring possibilities to support the formation of a CRC focused organization.
In July 2024, GCCA partnered with CancerNet Japan, an all-cancer advocacy organization, to hold an in-person event in Tokyo, bringing together a group of advocates, survivors, and industry for a panel discussion on the future of patient advocacy in Japan. Attendees representing a variety of disease states within oncology participated in a lively discussion around challenges and opportunities. Following the in-person event, GCCA conducted individual virtual insight exchanges with participants. This offered an opportunity for participants to provide feedback after reflecting on the discussion at the event.
The findings of the interviews and the event led GCCA and CancerNet Japan to the development of a poster and white paper, highlighting the current landscape of patient advocacy in Japan as well as opportunities for action. The poster, “Patient Advocacy in Japan: Challenges, Opportunities, and the Path Forward” was presented at the March 2025 Japanese Society of Medical Oncology Annual Meeting in Kobe, Japan by GCCA President, Nicole Sheahan, Director of Equity and Partnerships, Candace Henley, and GCCA consultant, Aiko Brody. The poster received positive feedback from stakeholders.
The Future Role of Advocates, a multi-stakeholder event, was also held in March 2025, in Tokyo, Japan, to further engage advocates, survivors, and industry and explore opportunities for supporting the growing patient advocacy movement. The event also fostered robust discussion among advocates, medical professionals, and industry representatives about how patient advocates in Japan can collaborate well with medical professionals and industries.
In addition to the poster presentation at JSMO and the multi-stakeholder advocacy event, GCCA engaged with existing and potential partners in Japan.
In Hiroshima, Nicole and Aiko met with Noriaki Nakamoto, the husband of a long-term breast cancer survivor who has created PapaCoco. PapaCoco is an organization that educates husbands and other caregivers about breast cancer and treatment options. PapaCoco addresses the unmet needs of working spouses and family caregivers who have limited time to engage in their partners’ cancer journey. They also run the PapaLift program, developed by Noriaki-san, to support the transportation needs faced by many cancer patients in Hiroshima.
Nicole and Aiko also met with Satoru Kakimoto, a survivor of colorectal cancer for nearly 20 years. Satoru-san is interested in growing the colorectal cancer advocacy community in Japan. This meeting has connected him with CancerNet Japan who are now working locally with him to explore starting a colorectal cancer focused advocacy organization.
GCCA also held meetings with the Japanese Institute for Public Engagement (Ji4pe), connecting with Naoki Tsutsumi and President Dr. Kyoko Imamura. The non-profit offers various workshops to educate professionals and patient advocates about clinical trials and how to engage with each other.
This trip to Japan included many productive and inspiring meetings, and GCCA is proud to be working with such notable partners. We look forward to our continued collaboration.