Humans exist essentially as individuals. But when they opt to live separately from others, they are apt to be helpless. In contrast, when individuals meet and join hands with others to found an organization for a certain purpose, they may become powerful enough to have the government listen to them and act on their behalf.
Cancer-related organizations can be classified into two categories -- those mainly organized by cancer patients themselves and others involving support groups for both cancer patients and their family members. The former mostly host get-togethers for patients and family members and serve as places for exchanging necessary information and sharing experiences. The latter also support both patients and family members by dealing with various social issues, such as helping patients continue to work or find job opportunities. However, it is true that there are groups that cannot be simply categorized into either type.
Why do cancer-related groups need to be organized? This is because of the reality that people with cancer and their family members tend to be isolated. Thanks to advances in diagnosis and treatment, more and more cancers are becoming curable. According to a survey by the National Cancer Center, the five-year survival rate for people diagnosed with cancer stood at 66% after years of improvement. But cancer continues to be perceived in our society as a fatal disease, a situation that leaves cancer patients and people around them feeling deeply alienated.
Today, giving cancer patients and their families hands-on support to keep them from being isolated is a global trend. Cancer patient groups and support groups for cancer patients and family members are playing the key role in promoting this trend.
Patient groups
First, let's compare the activities of cancer patient groups in Japan and abroad.
In Japan, it seems that many of such groups take care of patients regardless of cancer types. Among them is the Japan Federation of Cancer Patient Groups. Comprising a network of 42 regional groups across the country, it aims to realize a society where people diagnosed with cancer can live with peace of mind with improved cancer treatment available.
As far as groups that focus on patients with particular types of cancer are concerned, those grouping people with breast cancer obviously account for the largest portion. This can be explained by two reasons -- breast cancer usually needs a long period of treatment and women have a greater propensity than men to participate in patient group activities. One of the country's leading breast cancer groups is the Akebonokai Breast Cancer Network Japan, founded about 40 years ago. In addition, local areas have small groups formed by people with a single type of cancer. They vary in scale and structure.
Patient groups abroad are usually larger and more proactive than their Japanese counterparts. The largest U.S. breast cancer foundation is Susan G. Komen, originally known as the Susan G. Komen Breast Cancer Foundation. It was founded by a woman in 1982 in memory of her elder sister, Susan, who died of breast cancer at the age of 36. Since its inauguration, the organization has funded the equivalent of about 100 billion yen in total in breast cancer research and related programs. Komen, which is committed to reducing the current number of breast cancer deaths in the United States by 50% by 2026, has made relevant recommendations to the federal and state governments there. In Japan, few patient groups fund research.
Patient groups in Japan are not as powerful as that U.S. foundation. Nonetheless, I urge them to unite for common purposes so that they will be able to effectively appeal to the government and legislature to deliver overdue policy solutions for cancer patients. It is my belief that cancer patients' efforts to speak up and act on cancer-related issues will eventually lead to social transformation.
Support groups
Second, let me focus on what Japanese support groups for cancer patients and their family members do. They also vary in size and nature, but here are a few examples.
Established in 1958, the Japan Cancer Society (JCS), over which I preside, has kept expanding activities year after year. They now include the "Relay for Life" charity program, a 24-hour relay with people who support cancer patients taking turns walking and raising money. While this charity event takes place at various locations in the country, the JCS head office in Tokyo provides free telephone consultation services for people with cancer and their family members.
The JCS carries out the country's largest cancer screening program, with about 12 million people receiving cancer screening examinations through its 42-branch network each year. The program detects about 14,000 cases of cancer annually. The society currently has an annual budget of about 600 million yen.
CancerNet Japan is a nonprofit that is active in organizing forums and producing videos and booklets with a view to disseminating accurate cancer-related information based on scientific evidence.
PanCAN Japan, set up as a Japanese branch of the U.S. nonprofit Pancreatic Cancer Action Network, actively distributes updates on pancreatic cancer treatment.
Nonprofit maggie's tokyo provides space for cancer patients and family members to casually get together and receive advice from specialists.
Welfare foundation Shoriki Kosei-kai is funded by donations from The Yomiuri Shimbun and other entities. In its early years, the foundation donated wheelchairs and other welfare gadgets to welfare facilities. Since fiscal 2006, it has focused on supporting people with cancer and their families.
The focus of activities differs from group to group. Some put emphasis on the introduction of clinical trial information concerning new drugs pending regulatory approval, while others concentrate on providing space for patients and family members for networking and exchanges.
Methods of sharing information with cancer patients also vary. Some groups adopt person-to-person communication through telephone consulting services or at get-togethers of patients, while others give importance to online networks to reach as many patients and family members as possible throughout the country. Despite such differences, the one thing all of them have in common is a dedication to cancer patients and family members.
Duplication in activities
Given that there is much duplication in the support activities of various groups, they should look into a new theme of using a common platform as a way of taking a big-picture approach to future anti-cancer activities.
Many overseas support groups for patients and family members are more powerful than their Japanese counterparts, as in the case of overseas patient groups.
The Geneva-headquartered Union for International Cancer Control (UICC) groups more than 1,000 organizations in more than 170 countries and regions. The Japan National Committee for UICC is composed of the Japanese Foundation for Cancer Research, the National Cancer Center, the Japan Cancer Society and others. The council stages a variety of "World Cancer Day" activities every year on Feb. 4 to raise international awareness of cancer. On that day, lectures on cancer and lighting-up events are held in Japan, too.
The American Cancer Society, which is a member of the UICC, is the world's largest support organization for cancer patients and family members. Having about 1.5 million dedicated volunteers, the society covers six geographical regions within the United States with an annual budget equivalent to about 95 billion yen. It provides free telephone consulting services 24 hours a day, 365 days a year
The so-called Patient Health Engagement (PHE) model has been gaining more and more attention mainly in Europe as a psychosocial concept to inspire patients to become knowledgeable about how to better manage their diseases. The PHE model is said to be effective in improving each patient's condition and enhancing treatment results.
The International Kidney Cancer Coalition (IKCC), an independent global network of patient organizations, has published a book replete with stories featuring patients and family members who live with hope. In publishing the book, based on the PHE concept, the organization invited clinicians to get involved. It helps support groups for patients and family members in the world.
As a kidney cancer survivor, I participated in an annual IKCC global conference held in Lisbon in April 2019. I was impressed very much by the presence of patients who looked quite lively.
In the West, many people are said to be individualistic. On the other hand, they also know empirically that they can gain great power once they belong to something like, say, political organizations and lobbying groups. They know, indeed, that their participation in those entities has enabled personal or individual goals to be attained.
When contemplating the fact that Japan's cancer patient groups and support groups for cancer patients and family members have not become powerful yet, I can say for sure that what has been done in the West can be a guide for empowering them.
(Special to The Yomiuri Shimbun)
Kakizoe is president of the Japan Cancer Society and a past president of the National Cancer Center.
Read more from The Japan News at https://japannews.yomiuri.co.jp/
