Revising Japan's insurance system and patient advocacy activities

About us: Japan Federation of Cancer Patient Groups was established to celebrate the 10th anniversary of the National Cancer Control Act in Japan. It is a national coalition involving 50 patient groups across Japan, membership exceeding 30,000 people. What happened?: Japan has a universal health insurance system. For example, a working age individual with average income pay 30% of their medical costs out of pocket. In addition to that, there is a system in place where, if high cost medications are used and medical costs exceed a certain amount that is decided depending on income, the excess amount is refunded. If expenses exceed a certain amount, you receive a refund. This system is a great help when undergoing expensive medical treatment. However, in December 2024, the government suddenly proposed a revision that would raise the upper limit on high-cost medical care expenses for working people by up to 170%. This truly shocked us. Working age cancer patients would not be able to reach the high cost medical care benefit cap and would have to continue paying high treatment costs. Our Actions: 1. We immediately submitted a request to the national government in mid-December 2. We gathered stories about financial toxicity from 3,626 patients, and signatures from 135,287 individuals. 3.We presented data on the impact of cancer diagnosis on employment, income, and treatment continuation. 4.With help of healthcare economics experts, we simulated what would happen if the revisions were implemented. We sent a petition to the Ministry of Health, Labour and Welfare demanding a halt to the changes and to reconsider. Next, we called out for patients to give their stories about financial toxicity. Then we launched a campaign to collect signatures. We also requested academic societies to issue statements about the matter, because the revision will make many working age patients unable to continue treatment. We held meetings with Diet members of various political parties. With help of healthcare economics experts, we simulated what would happen if the revisions were implemented. We found that too many of the working-age population would fall into a situation suffering from catastrophic medical expenses. This is a concept defined by the WHO as one of the SDGs goals. Finally, the Prime Minister met us and listened to the voices of patient groups and He decided to temporarily suspend and review the revision of the high cost medical expense system. Why We Succeeded: 1.Using data with narrative patient voices. 2.Collaborating with academic societies, experts in health economics, and public health, as well as patient groups for rare and incurable diseases. 3. Utilizing media, including social networking services. It was the voices of patients and citizens that stopped this unreasonable change which was going to be implemented without sufficient discussion It was the first time that this kind of halt happened in the Japan's political history. Summary: We found that co-creation with patients' voices, academic societies, public health, and health economics experts can have a significant impact on healthcare policy. Ensuring patient access to treatment is an important topic from the perspective of health disparities, and developing a fair social security system is key.