Photo/Illutration Yuko Mitobe at the National Cancer Center Hospital on Jan. 27 (Tatsuya Shimada)

Patients are voicing concerns as the government considers raising the monthly out-of-pocket cap on burgeoning medical expenses.

Cancer patients who require long-term, costly treatments are particularly worried, fearing they may have to give them up.

“I felt like the government was telling me to give up on living,” said Yuko Mitobe, 50, who lives in Kodaira, western Tokyo, and is undergoing treatment for lung cancer.

Mitobe was diagnosed with advanced cancer seven years ago and told that a full recovery was unlikely.

She has been taking medication that costs around 20,000 yen ($129) per pill for three and a half years, including breaks in treatment.

Even with public health insurance covering 70 percent, her total medical costs have neared 8 million yen.

Thanks to the High-Cost Medical Expense Benefit, her monthly out-of-pocket costs have been kept between 40,000 yen and 90,000 yen.

But she has long felt guilty toward her husband and two children as the budget-sapping expenses continue.

“Not just those with cancer―many patients and families are already struggling under the current cap,” Mitobe said. “I don’t want the government to raise the cap without listening to patients’ voices.”

The High-Cost Medical Expense Benefit serves as a safety net within the public health insurance system. It ensures that patients’ out-of-pocket expenses remain within a set limit even if their payments at the counter are high due to costly treatments.

The monthly out-of-pocket cap is based on the individual’s age and income level.

The government has included an increase in the baseline amount used to calculate the out-of-pocket cap under the High-Cost Medical Expense Benefit in its initial budget proposal for fiscal 2025 to help curb the rising social security costs.

Under the proposal, the cap will be raised by 2.7 percent to 15 percent, depending on income group, in August 2025, with further adjustments and more detailed income categories planned for August 2026 and August 2027.

For example, those earning 7 million yen a year would see their monthly out-of-pocket cap increase by 58,500 yen to 138,600 yen.

AFFECTS WORKING-AGE POPULATION

A survey conducted by the Japan Federation of Cancer Patient Groups from Jan. 17 to 19, opposing the increase in the cap, gathered responses from 3,623 patients, their families and health care workers.

An online petition against the increase, launched on Jan. 29, has collected around 75,000 signatures as of Feb. 3, in just six days.

“Raising the cap on high-cost medical expenses puts livelihoods and lives at risk,” Shinsuke Amano, board chair of the Japan Federation of Cancer Patient Groups, said at a news conference at the health ministry in late January.

“We want the government to reconsider the plan immediately,” he added.

An executive from the Japan Patients Association also attended the news conference, explaining the struggles of patients who require expensive medications for conditions such as rheumatoid arthritis.

Chiharu Kuroda, head of the Patient Financial Support Association and a financial planner who advises cancer patients, frequently receives consultations from those in the working-age population.

She has seen many cases where cancer patients struggle with reduced incomes while undergoing long-term treatment, consistently paying up to the monthly out-of-pocket cap.

“With the rise in high-cost medications, I understand the need to raise the cap to some extent,” Kuroda said. “However, I think the government should consider out-of-pocket costs based on each patient’s financial situation and ability to pay.”

The High-Cost Medical Expense Benefit applies not only to cancer patients but also to those with various illnesses.

“Even those who are healthy now should see this as an issue that could affect them,” Kuroda said.

Prime Minister Shigeru Ishiba told a Lower House Budget Committee meeting on Jan. 31 that he would consider hearing opinions from those directly affected.

(This article was written by Hajime Ueno and Chisato Matsumoto.)

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