Patient Organization Collaboration Promotion Committee The 1st Patient Organization Advisory Board

Mr. Shinsuke Amano, President of the National Federation of Cancer Patients' Associations (hereinafter referred to as "Zenganren"), gave a presentation on his activities prior to the establishment of Zenganren, including the background leading up to its establishment.
I myself was diagnosed with malignant lymphoma in 2000, and joined the activities of "Group Nexus Japan," a malignant lymphoma patient organization, before becoming the chairman of Zenganren in 2015. Since 2000, patient groups have pointed out the problems of unapproved drug use (the so-called drug lag problem) and the issue of equalization of treatment, which led to the establishment of the Basic Act on Cancer Control in 2006.
I also served as a member of the Council for the Promotion of Cancer Control from 2009 to 2012, and together with five other patient committee members, we first addressed the issue of reducing the financial burden. At that time, patients were required to pay for outpatient treatment, and the second term patient committee members jointly requested that the maximum amount of high-cost medical care be approved for outpatient treatment, which was granted in FY2012. Considering the advent of today's expensive cancer drugs, patients would have been forced to bear a considerable burden if this certification had not been granted. In addition, we have been aware of the problem of drug lag since the first phase, and in particular, we requested the Council to address the issue of off-label drugs at that time, and I believe that this has led to the current expanded clinical trials.
Cancer patients are also actively involved in local activities. I also served as a member of the Okinawa Cancer Treatment Coordination Council and was involved in the issue of base hospitals for coordinated cancer treatment. Okinawa Prefecture has many remote islands, so geographical issues and financial problems for patients who have been hospitalized for cancer are major issues. Under an agreement with the prefecture, we have been providing financial support since 2013 for patients on remote islands who wish to undergo breast conservation.
Since there are various types of cancers and treatments, each type of cancer has its own patient association, and the actual situation in each region is different. Patient associations are supposed to raise their voices in accordance with their respective conditions, but we felt that we could not reach the common themes in cancer and the issue of medical costs by raising our voices in a scattered manner. The timing of the completion of the Second Stage Medical Care Plan in 2016 and the fact that the Diet was discussing the revision of the Basic Law on Cancer Control in a bipartisan parliamentary group led us to believe that it was necessary to create a coalition of cancer patient associations, and the Zenganren was established.
As our first activity, we collaborated with the Japan Council of Associations for Intractable Diseases and Disorders (JPA) to make requests. Initially, the federation submitted a written request, but the JPA gave us a suggestion and we held a press conference together with the JPA. Although it was not our intention from the beginning to focus mainly on request activities and policy advocacy, as a result, our request activities have become the main focus of our activities.
The revision of the Basic Law on Cancer Control was not an important theme for the national government, and its enactment was not expected, but we managed to get it passed just in time in December 2016 by sending individual questionnaires. The revised Basic Law on Cancer Control includes language stating that society as a whole should support cancer patients. In addition, since there is little support for rare and intractable cancers, the law also includes language regarding support for rare and intractable cancers. In addition, since we need to visualize the in-hospital cancer registry, we plan to collaborate with academic societies and other organizations in a project to provide easy-to-understand information to patients.
In terms of collaboration with academic societies, we are co-hosting a symposium with the Japanese Society for Palliative Medicine, and as a patient organization, we are participating in the Ministry of Health, Labor and Welfare's "Consortium for the Promotion of Cancer Genome Medicine". There are various problems for cancer patients, such as being denied insurance coverage if they have high-risk cancers, and we are making proposals on these issues as well.
Finally, regarding clinical trial information, I would like to point out that it is extremely difficult for patients to access clinical trial information at the Japan Pharmaceutical Information Center (JAPIC), and it is difficult for them to obtain the information they need.

Ms. Ikuko Yamaguchi, President of COML, a certified non-profit organization, introduced the activities of the organization and talked about her expectations and requests to the pharmaceutical industry.
COML started its activities in 1990. At that time, it was taboo to tell cancer patients that they had cancer, and it took a lot of effort to know who they were. When a patient asked, "What is this medicine?" the answer was, "A white pill that you need." The attitude was, "A layperson wouldn't know anyway, so it's okay if you don't want to know.
COML's activities began by asking such passive patients, "Is that OK with you? We started our activities with the idea that "patients and doctors should work together, not against each other" and that patients themselves should be "the protagonists of their lives" and "responsible for their bodies" and "be wise patients. We are not only leaving it up to the doctors, but we are also working with the idea that patients should "think about what efforts they can make" and "become patient citizens who can actively participate in treatment and make proposals to solve problems.
One of the specific activities is telephone consultation, in which non-medical staff members of COML have received approximately 58,000 consultations to date. COML staff, who are not medical professionals, have received about 58,000 calls so far, and they offer advice based on their true feelings, such as "I am feeling anxious because of the shift from inpatient to outpatient treatment. Recently, the number of patients with mental illnesses has been increasing, and we are working to accept the thoughts and feelings of these people and help them feel better. The average time per phone consultation is more than 40 minutes, sometimes exceeding one and a half hours.
The second activity is the Patient School, which we started in January 1991. We also present topics, but the main focus is the exchange of opinions among participants, which we have done mainly through group discussions. Recently, the number of people who go out to speak, even if they have to spend money, has been decreasing. We believe this is due to the fact that we live in an age when information can be easily obtained on the Internet. Still, topics for which there are no answers or medical costs are not listed anywhere, so on the contrary, the number of participants tends to increase.
The third is the SP (Simulated Patient) activity, which we started in 1992. Objective clinical competency examinations, including medical interviews, have become mandatory in medical, dental, and pharmacy schools, and we participate in medical education as a partner for medical interviews. in response to the POST-CC-OSCE (Post Clinical Examination OSCE) starting in 2020, trials began in FY2017. We are also involved in the hospital exploration program.
We are also involved in hospital expeditions. This activity was started in 1994 in order to improve hospitals from the viewpoint of patients, who are the users of hospitals, and to communicate the issues that hospitals face through actual hospital tours and visits. Recently, we have been approached by large hospitals such as Keio University Hospital and Chiba University Hospital.
In addition, since 2001, we have also been conducting workshops to improve patients' communication skills and help them become aware of their own problems. This is a program that we have developed independently, and recently we have been conducting it as a "Patient-Medical Staff Communication Course" so that medical staff can participate as well.
Apart from this, we also prepared a booklet entitled "10 Articles to See a Doctor" in the form of a draft at the request of the Ministry of Health and Welfare in 1997. The booklet was distributed by Kyodo News and 40,000 copies were printed, but the response from all over Japan was so great that the booklet ran out of stock within three months. In 2014, we also distributed 30,000 free copies of "10 Articles of Life and Body" for children.
In addition, COML also holds a "Citizens' Training Course for Medical Care Providers" to encourage participation in medical care by patients and citizens. We will continue to participate in various medical-related conferences. In the future, we plan to start training courses for general committee members for various medical-related conferences and a banked concept.
Lastly, as a request to pharmaceutical companies, we feel that the negative information and risks of pharmaceuticals are not being conveyed in a correct manner. We believe that it is important to eliminate concerns about drugs, such as excessive worry about side effects. It is also important to increase patients' information literacy. As a specific request, we would like pharmaceutical companies to clarify what they can and cannot do, and then make efforts to provide specific information on what they can do with regard to drug information.
In the future, we would like to actively engage in information provision activities at the Patient Information Center. For example, booklets and pamphlets from pharmaceutical companies are the most popular, and we are taking care to replenish them so that we do not run out. I would also like pharmaceutical companies to make industry-wide efforts to place their booklets and pamphlets in easily accessible places where patients can see them.