– by Leigh Manasco & Rebekkah Schear
The third installment of the LIVESTRONG Foundation’s Patient Empowerment Project (PEP) culminated on Saturday, December 7, in Tokyo, with the “Over Cancer Together” (OCT) survivor forum. Led by local organization Health and Global Policy Institute (HGPI), along with other local NGOs, and supported by LIVESTRONG and the American Cancer Society, the OCT forum brought together survivors, government representatives, health care professionals and the media to discuss the issues facing cancer survivors in Japan and call to action positive change for the country and those dealing with a cancer diagnosis.
Throughout the day, survivors shared their experiences with the audience. We heard stories about the stigma surrounding a diagnosis, the lack of accurate information and the challenges of returning to the workplace after treatment. Political reporter Miho Suzuki, who was diagnosed with breast cancer at 24, shared a video of her diagnosis, allowing the audience to experience that intimate, emotional moment firsthand. These stories were supported by presentations from experts within the cancer community, sharing complimentary data and research for these issues.
PEP was designed to leverage the survivor voice to bring visibility to gaps in cancer control and highlight the need for cancer to be a higher priority on a country’s health agenda. The evolution of health care systems, services and programs is not always aligned with what survivors want and need most. Cancer care systems in particular are complex and face many challenges, and as a result, the physical, emotional and practical needs of cancer survivors often go unmet. These challenges could range from a lack of data or lack of a cancer registry, to inadequate insurance coverage, to survivors being excluded from decision making processes that have a direct impact on their treatment. However, cancer survivors and their families can help us learn what is working well in a health care system and what needs to be addressed. Their voices are a powerful tool in advocating for change and improvements in attitudes, knowledge, practice, policy, systems and services.
The Cancer Control Act has become the foundation of cancer policy in Japan. The law stipulated that the central government formulate a Basic Plan to Promote Cancer Control Programs. Each prefecture (state) is mandated to craft its own plan based on regional needs and ability to integrate with other localized health care plans. Since the initiation of the Cancer Control Act in 2006, cancer control in Japan has developed significantly and has included elements of patient advocacy. In the formulation of the initial (2007) and second (2012) Plans to Promote Cancer Control Programs, patient representatives have played a key role in presenting the viewpoints and needs of patients, families and caregivers.
Despite the fact that patient advocacy is a valued concept in the country, there is still very little public participation. Additionally, the country faces negative perceptions about cancer and pervasive stigma. Our partners at the HGPI have said that “advocacy activity in Japan could be defined as personal, closed and domestic, and transforming this to something that is public, open and global is a huge opportunity.”
In the coming months, the OCT campaign will release a call to action, identifying the specific actions that health care providers, schools, local and national government, media, survivors and the public can take to address the challenges that were highlighted. While the forum has concluded, this is the just the beginning of a survivor movement in Japan that can have a lasting, positive effect for those fighting cancer.