The Impact of Increased High-Cost Medical Care on Lung Cancer Patients

On June 5, 2023, the Pal System Mutual Aid Cooperative Federation held an online seminar in Shinjuku, Tokyo, to discuss the implications of increased high-cost medical care for patients’ lives. Among the speakers was Yuko Mitobe, a mother battling lung adenocarcinoma while raising her two children. She shed light on the daunting financial strain associated with expensive treatments, which has led many patients to reconsider their choices regarding the continuation of their care.

Making Cancer a Personal Issue in Society

Yuko Mitobe was diagnosed with stage IV lung adenocarcinoma in 2018 when her children were just in second and fifth grades. Due to the nature of her illness, surgical and radiation treatments were not viable options for her. Instead, she entered an indefinite regimen of chemotherapy, with each pill costing about 20,000 yen. The high costs, compounded by complications such as drug resistance and severe side effects, took a toll on her physical and mental health. Despite support from her workplace, Yuko found herself losing motivation to work and eventually left her job after six months.

During her treatment, she faced another emotional blow when her father was diagnosed with esophageal cancer. After caring for him until he passed away nine months later, Yuko herself struggled with the fear of death, leading her to seek care through a mental oncology department and resilience clinic. Following her departure from the workforce, her life revolved around treatment, parenting, and home responsibilities, which isolated her from social connections and provoked a desire for community support among others with similar experiences.

Through an online forum where cancer patients shared their struggles, Yuko came across a job advertisement seeking to support cancer patients wishing to work. She quickly secured employment, even after hospitalization due to drug resistance. With understanding from her employer, Yuko managed to continue working while undergoing treatment. This inspired her to advocate for greater societal understanding of cancer through her personal experiences.

Creating a Community for Cancer Patients

In 2022, Yuko founded a “cancer salon” aimed at connecting individuals within the community who felt unable to share their experiences with cancer. By renting space in local cafes and bathhouses, she established an environment where participants could freely express their thoughts and expectations for a society that recognizes cancer as a personal issue to be embraced collectively.

Rising Medical Costs Affecting Decision-Making

As Yuko continued her advocacy, news broke in December 2024 about the government's plan to raise the limit on high-cost medical expenses. This program aims to lessen the financial burden of medical fees on families, adjusting the monthly subsidy based on patients’ age and income. However, for long-term cancer patients like Yuko, this increase presents a life-or-death challenge.

Amidst her children's upcoming examinations, the prospect of sky-high treatment costs threatens to limit their future educational opportunities. In a survey for cancer patients with children, many expressed concern that they might have to prioritize their children's futures over their own treatments if costs continue to escalate. In response, Yuko voiced these challenges at national hearings, press conferences at the Ministry of Health, Labour and Welfare, and demonstrations in Nagatacho, advocating for the program’s necessity. Collectively with her allies, they garnered over 58,154 signatures on an online petition opposing the increase.

While the scheduled heightening of expense limits in August 2025 was postponed due to public pressure, discussions regarding the proposal are ongoing, and it has not been completely retracted.

Reflecting on her unexpected role in politics, Yuko expressed gratitude for the support she received and hopes that her action has inspired others to engage in political dialogue. She cautioned participants about her concerns regarding a society where cancer patients feel compelled to take such steps for their well-being.

Advocating Awareness for Cancer

With statistics indicating that one in two Japanese individuals will develop some form of cancer in their lifetime, the need for early detection initiatives, educational outreach on treatment options, and support systems for patients’ quality of life is increasingly critical.

In light of this, the Pal System Group has launched a cancer awareness initiative to disseminate accurate information about cancer. In October, they will include information about health guarantees alongside promoting the importance of regular screenings and treatments through a dedicated web resource, while also creating Q&A content themed around cancer and nutrition. This initiative aims to encourage individuals to perceive cancer as a personal issue worthy of discussion.

The Pal System Group remains committed to being sensitive to the needs of diverse individuals, working towards creating a more inclusive society where everyone can lead fulfilling lives.